Lamisil pills causing joint pain, disturbing dreams, insomnia and continued dizziness after 6 days??
Question posted by Benh90 on 26 Oct 2013
Last updated on 21 July 2018
I have been off lamisil after taking 6 250 mg pills, one a day for 6 days.
I started to notice myself feeling exhausted and dizzy after a few days and for some reason I carried on taking it. Then I noticed some joint pain on the 6th day, so I stopped taking it. The joint pain and dizziness carried on getting worse for two days and now is in my right elbow and my hands. My feet and ankles have also hurt. The most disturbing part of this is the insomnia and horrible vivid dreams the drug has caused. It is also causing me to feel anxious and depressed. I can't sleep very well and my sleep is disturbed by vivid dreams.
When will these side effects die down?
This is the 4th day being off the drug. My hands aren't as bad and the dreams seem less vivid but I feel far from normal. Reality seems skewed and it know it is all down to this dangerous chemical.
For anyone who is doubting this, look at the ask a patient website section on lamisil/terbinafine.
Also look at this and the comment at the bottom from the user Matt_grey:
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
4 Answers
HB
Hbanna
20 July 2018
Hello Mr Ben, Can you please give us an update of how you’re doing now ? When did the symptoms actually go away ? About a month and a half ago i took Terbinafine for 20 days without any side effects but then at day 21 I started feeling weak, fatigued and dizzy all day long without improvement. On day 26 and after testing my blood, brain and any possible cause other than the medication itself, I decided to stop taking it. No one doctor was totally convinced it was actually the cause of my symptoms and I did my own research and found out about the long terminal half life of this medication... I mean after doing the calculations and with a Terminal half life of 200-400 hours it would take up to 3 months til the medication actually gets cleared from one’s system. Today is day 17 after stopping the med and Im terrified symptoms won’t improve any soon as I have so many things to do and it’s definetly affecting my quality of life.
I actually work in the medical field, I read about the medication before taking it and got many medical good opinions about how safe this drug is. But after this i can tell that it’s definetly not worth it to put one’s whole body system under such a horrible stress. Please let me know when did your complaints actually stop and if there’s anything I can do about it to make things easier. Thank you.
Votes: +0
BE
Benh90
20 July 2018
Hi there, really sorry to hear you haven’t reacted well to terbinafine.
In hindsight, I think I probably had a particularly bad version of the drug. The company that made the drug I took have been made to recall drugs due to being unfit for human consumption and they’ve also been involved in a scandal where they faked evidence. That said I can’t be certain if the terbinafine was fine or not.
Don’t let this make you anxious as my story is definitely not yours, but I have been unwell ever since that reaction. I still have fatigue now, I struggled with horrendous nanxiety and depression for the first two years after the reaction, I still have joint pain in my hands that ruined any prospect of playing an instrument professionally, I have had on and off nightmares ever since the reaction. It’s been tough, tough 5 years to say the least. I’m not able to work because of these symptoms.
Again, don’t let this make you anxious. When I had this reaction I spoke to many people and my case seems to be one of the worst I’ve found when I’ve talked to others who’ve had reactions to terbinafine.
As you say the drug does take a very long time to leave your system, which is why side effects can last weeks or months even with mild or moderate reactions.
Here’s my advice to you - do not fight the fatigue. Do not push through it until you have feelings of exhaustion the next day or the day after. You need to treat your body kindly in light of the current limits fatigue is causing you. If you need to, take time off work if possible. Spend it with family if you have a support network around you. Your health is much, much mo more important than work. How bad is your fatigue?
Drink plenty of water, eat good food, meditate, try to stay as stress free as you can. As much of a shock to your system as it is, accept that currently your body is in a state where it needs to repair itself.
I too had bad dizziness but a lot of that is gone now. The fatigue is also generally quite a lot more tolerable.
Things have gotten a lot better for me overall and my reaction was very, very severe. You might find that you improve within a couple of weeks, or it could be a slower process, but I’m confident you will improve if not get back totally better. It’s a healing journey you’re on now.
And of course the doctors tell you it wouldn’t do this, tbh doctors and nurses know what the pharmaceutical companies tell them about their drugs. The industry is very slow to change in the face of making countless people needlessly ill when safer alternatives can often be used.
There are countless examples of this, but prime examples are fluoroquinolones and mefloquine, which you may want to look into, but I don’t want to cause you any more anxiety. I found the site/fb page ‘floxie hope’ to be quite helpful as people who’ve had severe reactions to fluoroquinolones detail their recoveries and what they did to help themselves.
If you have any more questions feel free to ask.
HB
Hbanna
20 July 2018
Thank you so much for your prompt response. I’m really sorry for what has happened with you and I hope you keep feeling better til you become perfectly normal. If I may ask, about those whom you contacted with similar reactions to the medication, do you have an estimation of how long their symptoms kept on disturbing them ? I’m trying to find some happy endings to become a little more optimistic. Thank you again and i’ll definitely take all your advices into consideration.
BE
Benh90
21 July 2018
Thanks, hopefully one day I’ll be at least mostly over it. I do have a lot of my life back but I can go through tough times too. I don’t think this should be the case with you, I’d imagine that like most people who have adverse reactions to drugs you should get better.
I’ve spoken to many people while I’ve had all this going on. Did you read the first part of my thread? I know it’s quite long, but I talk about the first person I spoke to on there. He had quite a bad reaction like me with severe anxiety as well as fatigue. He said it took him about a year to get over the first symptoms and another year to feel fully alright again. He had answers from doctors so he went to Johns Hopkins and they told him that he’d had an immune mediated response, that it takes 6 months for the medication to fully leave your body and that after that 6 months is when your body starts to wind down and heal.
I found that person from the website ask a patient. I went through a lot of the posts from people who had similar symptoms to me with their reaction to terbinafine and filled out contact forms and asked them the kinds of questions you’re asking me. I spoke to some people who got better much sooner in a matter of weeks, and found comments in the depths of the internet from a couple of people who had long term issues like me, including one person with fatigue. I’d recommend going through ask a patient and talking to people with fatigue from their reaction and seeing how long it took them to get better. I’m certain plenty of people do get better from the fatigue. From my experience the fatigue eases off. For some people it just goes away with a little bit of time. For others it can be a longer issue where it requires effort on your part to get better. Some people are unfortunate enough to suffer from fatigue for many years, but I’ve even heard of someone who had a bad reaction to a fluoroquinolone, had chronic fatigue for 5 years then recovered.
Sorry I don’t have a lot of exact answers on individual cases, I do recommend talking to people on ask a patient and seeing what they say. You don’t have the option to email to everyone but you will find people to talk to.
One thing i will say is that you should probably look into recovery from chronic fatigue - which involves regular rests and not using more energy than you have (ie the boom/bust cycle). You may find you just recover in the natural process as almost everyone does seem to improve given time from these reactions. You will feel better than you do now in time, I’m certain of it. Plenty of people recover from fatigue regardless. I’d talk to your doctor about things like post viral fatigue and see what they advise you about recovery.
Do stay in touch and let me know how you get on. I do think you’ll recover, just accept that you’ve had this reaction and that you have some limitations for the time being and it’s very important not to push beyond them.
Hi Ben, I commenced taking Lamisil in Dec 2013 and started experiencing insomnia, at first I did not make the connection as I only had this symptom so I cut out caffeine, which helped a little, however the insomnia continued. I continued to take the medication as I was getting good results and thought the symptoms would stop once I ceased taking the medication. I took the Lamisil for just under 3 months. A week before I stopped taking the Lamisil, I also quit smoking so the insomnia I continue to experience may be due to smoking cessation. It has almost been 3 months since I stopped taking the Lamisil and I am still experiencing insomnia. It's been very frustrating.
Votes: +0
BE
Benh90
22 May 2014
Hi. I'm really sorry to hear that you are struggling as well. It seems there's quite a lot of people who can't tolerate lamisil and the effects can go on for a long time after you stop the drug.
So is insomnia not your only symptom? How bad is your insomnia?
I don't know how many of my and EG's comments you've read, but I'm glad you found it because this is reason in documenting my experience.
As you might have seen, I ended up talking to a man who had a similar reaction to me in its severity and symptoms, although everyone seems to be different in how they react.
He told me that after months and months of suffering, he went to Johns Hopkins where the doctors explained that lamisil stays in your system for 6 months+ and that your body continues to react to it even after it's gone. If it's some kind of autoimmune reaction then it can take your body another 6 months+ to stop reacting to what it deemed as a hostile force.
I'm now nearly 7 months out and while a lot of things have gotten better - no more insomnia, just weird sleeping/odd, intense dreams, mild joint pain and much less anxiety and depression - I still have terrible fatigue in the mornings and I feel very weird at points throughout the day.
It took the person I spoke to 18 months for him to get better. Lamisil affects the nervous system but fortunately it always seems to heal, just extremely slowly.
Do you work? You must feel awful after 3 months of insomnia. I'm not sure if I am actually recommending this but a small amount of cannabis helped me to overcome the insomnia.
Do your docs believe it's the lamisil causing your insomnia?
Anyway, it will go away given time, how much time I can't say. I think I can feel in myself ( how I feel when I wake up etc) that it's probably going to take 18 months for me to feel normal again. Most of it's going away but the morning fatigue is still intense and I think that will be the last part to leave. I sometimes lose faith in the fact that it'll go away, but the too doctors at John's Hopkins understand that these drug reactions do go away but it takes a lot of time for your body to settle.
Hope things aren't too bad for you !
BE
Benh90
22 May 2014
Top doctors
Also I'd try and go for long walks to tire yourself out, if you can do light-moderate exercise without feeling too bad then I would definitely do it. Hiking is good.
RO
rose_petals
22 May 2014
Yes I do work, however, I found that I am not actually that tired even though my sleep is disturbed. This is really weird but actually good as I can still function in my job, which is quite analytical. I don't really want to take up smoking again as I just quit and am doing well. I spoke to the doctor and they seemed to think the insomnia was due to quitting smoking and my body adjusting, they did not really have regard to the impact of Lamisil event though I explained that it started when I commenced taking it. I guess I just need to wait it out... 18 months is a long time!
RO
rose_petals
22 May 2014
Oh yes and insomnia is my only symptom - i sleep a couple of nights a week what i would classify normally (deep sleep) and the other times it appears to be a very light sleep where I tend to remember dreams.
BE
Benh90
23 May 2014
Well it's good that you're not tired.
The drug's effects are very weird - disgustingly odd from my experience. I've read of a guy on askapatient who had the side effect of having a lot more energy, he said it reminded him of 'using speed in the 90s', so this is probably the effect it's having on our rest.
I think the difference between you and me is that I ended up in hospital with a severely acute reaction, seemingly autoimmune or nervous system damage or something! You're lucky in that you've dodged all that, which to me means that you're maybe suffering from prolonged side effects rather than an autoimmune reaction.
Obviously I'm not a doctor, so I can't say this for sure.
But logically it makes sense because although you obviously must be sensitive to the drug, it's in your system for a long time. This is just a guess.
But I'll be honest, the docs have no clue about a lot of these drug reactions, partly because they're pretty individual from one person to another and many have different side effects, partly because symptoms can be vague (although you know what's causing it, they feel they can't pinpoint it) and partly because they don't think drug reactions can go on for so long after taking it.
But let's not kid ourselves, this drug is not like many other drugs, it stays in your system for an extremely long time and has the potential to cause damage to your nervous system - in England our doctors refrain from prescribing it because of its potential for adverse psychological reactions. When I arrived at the hospital the doctor asked me if I'd been hearing any voices in my head - although I think that was possibly melodramatic, or possibly a comment on a GENUINELY extremely rare side effect (not the ones they say are rare in the notes) or maybe even an incorrect statement. Anyway, don't let that worry you too much because you've not had a psychological reaction to the drug and aren't going to have one or else it would have already happened - I was told a similar thing at hospital except that the severity of my psychological reaction (weird dreams, depression, anxiety) had peaked and would only diminish as the drug left my body.
There's two possibilities to me - one is an extended reaction as a mere side effect that will stop after the drug has left your body. This would mean you would probably feel pretty normal by about 7 months, although many get better much sooner, I'd be mentally prepared to know it could go on for a while - although it will definitely end! The other possibility is like me, not only are you sensitive to the drug in its small amounts, your immune system, nervous system or both has been affected which can take a much longer time to fully heal, the longest I've seen with this kind of reaction is 2 years. This is from talking to people on ask a patient - you might want to go through them and send a few emails out, it depends though, it can make you feel a little anxious reading about these bad reactions. It does seem ones as bad as mine ARE rare though.
Anyway I wanted to ask you some questions! How old are you? Have you ever had sleep problems before? Do you feel that it is definitely the lamisil? Do you have stranger dreams since taking the lamisil - ie nightmares, upsetting dreams or feel like your dreams have changed since the lamisil? Do you have other symptoms that have come on since the lamisil?
Is that downright unnatural insomnia when you feel exhausted, relaxed and you're yawning and yet your body just won't click?
BE
Benh90
23 May 2014
By the way I don't want to lead you down the path of thinking it was definitely the lamisil, although it really sounds like it is!
Do you take any other medications or anything else at all drugs-wise, or supplement-wise?
When you say quit smoking, do you mean cigarettes or cannabis? Whatever you quit, it still coincides with the lamisil!
BE
Benh90
23 May 2014
Oh and do you exercise?
RO
rose_petals
23 May 2014
And yes I also started exercising after I quit smoking to minimise weight gain, so exercise for 30 mins approx 4 times per week.
BE
Benh90
23 May 2014
It's good that you exercise. I can only see one comment here though it looks like you may have answered my other questions but not submitted your comment?
RO
rose_petals
23 May 2014
I did submit 2 answers, however one if my answers is pending approval.
BE
Benh90
23 May 2014
Ah fair enough! My answers usually don't get past the 'pending approval' stage. Can you please submit it again?
RO
rose_petals
23 May 2014
Doesn't look like my other answer was approved! Any way, I'm not taking any other medications right now beside the occasional herbal sleep supplements. I ceased smoking cigarettes previously and have experienced insomnia with previous quit attempts - it's common to experience insomnia when quitting, however, not for this long. I feel sleepy in the evenings, however, when I go to bed just don't fall asleep or takes ages to do so. Dreams are more easily remembered but I would not say they are strange. Difficult to know if it is the Lamisil or the quitting smoking... smoking a cigarette before bed will answer this question but I don't really want to do that!
BE
Benh90
24 May 2014
I don't think smoking at night would necessarily answer your question, since nicotine is a stimulant and smoking before bed is usually a bad idea for insomniacs.
You said that the insomnia kicked in while you were on lamisil and before you quit smoking didn't you? If that's the case I'd think it was the lamisil personally.
Of course I'm not a doctor and I'm not saying that you shouldn't listen to your doc's advice, but from what I gather , most local docs don't understand this kind of drug reaction, so they will say your insomnia is caused by something else, or nothing to do with lamisil; but insomnia is a side effect of the drug and because of the time the drug stays in your system (and the damage exposure to the drug is capable of) it's totally plausible that side effects could last for a long time. In my opinion this is probably what you're experiencing.
I received an email from the clinic I got lamisil from saying that there have been post marketing studies where oral Terbinafine has been thought to exert an influence for 'at least 3 months after cessation' - or words to that effect (I think I c&p'd it in my original comment thread at the top).
I know that the person I speak to who had a similar reaction to me had some kind of temporary nervous system damage, which is what I'm pretty sure I've had, unfortunately - this is why my sleep is disturbed and I have strange dreams and even odd thoughts occasionally ever since this reaction.
Again, this is only my opinion (and this part is merely a guess), but it sounds like you've had a minor disturbance in your neurology from the drug - from what I can tell this is always reversible with time.
Or alternatively, you're sensitive to the drug and the side effect is drawn out but will end when the drug is out of your system and maybe you've had a little recovery time.
Has the insomnia got any better over time?
It's good that you're not using any drugs to sleep as it can become a negative cycle where you need them to sleep, but some low dose antidepressants can be helpful for sleep; although I wouldn't blame you if you just want to try and get through it drug free.
If you're convinced that it's lamisil when we've whittled away these other possibilities , you should tell your doc, keep him/her informed on your insomnia anyway.
Personally I'm skeptical of taking more drugs to help a situation caused by drugs, but the guy I know suffered with depression, anxiety, strange dreams, poor rest and strange thoughts for 9 months, at which point he started taking low dose cymbalta and within two months he was doing a lot better
RO
rose_petals
24 May 2014
Thanks for your advice, you've been really helpful and understanding. The insomnia is gradually improving, so I'll continue to monitor, my thought are that it is the Lamisil as well as the insomnia commenced when I took this medication. I'm thinking of seeing a different doctor as the one I saw originally was not very helpful, however, I'm really not sure what sort of help they can offer.
As you see we have no trouble believing you. Lamisil has some nasty side effects. You did what was right by stopping it, and it will take a while until its out of your system.
Votes: +0
BE
Benh90
27 Oct 2013
Thank you for your reply, what is your experience of lamisil?
How long do you think it will take to get over these effects?
EM
Emeraldgirl
26 Oct 2013
Hello Benh90 and a warm welcome to DC All medications have potential side effects, unfortunately for you, you experienced a number of these very quickly which can happen. This particular drug will take around 8-16 days to be completely out of your body's system. 70% is execrated in your urine. Now that you have stopped this medication which was the right thing to do the adverse symptoms should improve. At any point if you feel concerned contact your doctor. Take care
Votes: +1
BE
Benh90
27 Oct 2013
Thank you for your help. The insomnia is hard to deal with but I'm assuming it will all die down the longer it goes on for.
I ended up going to hospital because I was so concerned. My liver and kidneys are fine. The doctor told me how nasty the drug is, apparently it can kick off schizophrenia if you're unlucky. He compared it to anti malaria meds. He seemed to think the drugs half life is 1.5 days, although there's a lot of contradicting notes on that from different sources. He thinks I will be ok in a few days. I feel like it will take me a few weeks to get rid of these weird effects. Apparently they don't really prescribe these pills anymore because of the nasty side effects.
I will keep this updated because there's not a massive amount of info about this kind of thing. Any more info / support would be good as I am quite worried, although relieved to know I haven't damaged my organs.
My tendons slightly hurt as well as my joints. Not good as I'm a guitarist. I will just have to wait this out.
EM
Emeraldgirl
27 Oct 2013
Hello Benh90. Thank you very much for the up date. Seeking medical advice is always the right thing to do if you have any concerns, I am pleased that the doctor could put your mind at ease. With regards to the drug in questions half life I disagree with the doctor opinion. Clearly it cannot have a half life of 1.5 days as you would be asymptomatic (showing no adverse symptoms) by now. However this is something that one can research or ask a pharmacist. If you get concerns again please do not hesitate to seek medical advice again. Like I said all medications have potential side effects. Perhaps the prescriber should have brought this to your attention so that you could have made an informed decision. Take care and feel free to keep me up dated if you want to. All the best and take care.
BE
Benh90
27 Oct 2013
Yeah I did find it strange that he thought the half life was 1.5 days. He made out that it just keeps halfing every 1.5 days. But to me, after talking to other people who have suffered adverse reactions, it seems like the 200-400 hr figure on the internet seems more realistic.
Why do you say 18 days?
I'm rather exhausted but the doctor told me not to take sleeping pills, even natural ones. Also, my mouth is very dry and my joints are still hurting. He didn't think Id had an allergic reaction, but I'm not too sure.
I have 2-3 hrs of sleep last night when I was already exhausted, that's worse than the night before. I think the drug must die down very slowly.
Did you look at that link to the thread I posted originally? That guy seems to believe that the drug stays in your system for a very long time. Can't remember if I posted about the woman who had 5 pills and her side effects hadn't gone away after 2.5 months.
I can't deal with that kind of insomnia. I'm already exhausted.
EM
Emeraldgirl
28 Oct 2013
Hello again Firstly I will deal with the half-life of the drug which is 200-400 hours. This is based on normal renal function (Kidney function). 70% of the drug is excreted in urine. A person with normal renal function will pass ½ ml of urine per kg in an hour. This means that a person of average weight in the UK which is 70kg, will pass 30-40mls of urine an hour. So this is why it stays in your system for so long. Insomnia is a terrible thing. I am suffering with it myself (a part of my disability). I can understand why the Dr is reluctant to give you anything for this, has one does not want to compound/confuse the issue further. When you are really tired you will sleep for a while. Also with each day that goes by you should make an improvement. You can try reading something really boring or taxing sometimes this works. I also suffer from a dry month due to my medications. You can sip water or chew sugar free gum (I have a large supply).
I agree with the Dr, I don’t think that you have had an allergic reaction to the drug but you are experiencing some of the side effects of the drug. See link https://www.drugs.com/sfx/lamisil-side-effects.html I had a brief look at the link that you posted. However I believed your symptoms; thus one had to compare your symptoms with known side-effects of the drug. The lady who had prolonged side effects 2.5 months may have had reduced renal and liver function, which can happen for a number of reason but an obvious one could be age. Older people renal and liver function can become ‘less efficient’ with age. I hope this helps to put you at ease. I will ‘friend’ you and if you ‘friend’ you can ask me a private question. You can contact me at any time. Take care. I hope that you manage to get a bit of sleep.
BE
Benh90
29 Oct 2013
Going to give a little update to anyone who may come across this. I know someone will do eventually and will need some kind of reassurance. I have not come across anyone talking about these side effects specifically on the internet in depth.
Basically, I'm slightly better than yesterday. My mood is slightly better and I managed to get a little bit of sleep. I fell asleep on the settee for an hour before bed and managed 6 hours in bed. The sleep however is still disturbed with strange dreams that can be fairly frightening. My hands feel slightly better although the pain is in my knees, elbows and feet. I don't feel as psychotic but I am still far from right. Nonetheless I feel slightly better. I still think it's going to be a slow battle to normality, but things seem to be moving in the right direction.
The fear of feeling slightly psychotic still comes over me. When I wake up from the strange dreams I am quite disturbed but I try to remind myself that they are only dreams and cannot hurt me.
I feel pretty dizzy from time to time. I also feel quite surreal which kind if eases up towards the evening and then starts again when I wake up from sleep. I'm hoping most of this stuff just dies down as I get better sleep.
I'm still pretty concerned but trying to take each day as it comes and hopefully I'll feel pretty normal in a few weeks.
EM
Emeraldgirl
29 Oct 2013
Hello again Benh90 I am pleased that you managed to get some sleep, but your dreams remain a problem. I understand that you are looking for reassurance which I can completely understand especially since this drug stays in ones system for a long time. I think the person to see is your GP for a number of reasons. What I tried to ascertain yesterday from my sources was if there is anything that can be taken to 1) Increase elimination of this drug from your body and 2) If anything could be taken to treat the side effects. Unfortunately no one who I spoke to could answer this question. That said, I am not surprised that my endeavours have not been successful as I think the people who know the most about this drug could be someone who works in infectious diseases. A Pharmacist is also a useful person to talk to.
I have also done what I think you have done and that was to look at all the question and answers posted on DC regarding this drug to see if I could find someone who knows more about this drug or who had the same side-effects as you. However I did not find such a person. Regarding your symptoms and reassurance see your GP. This drug is going to be in your system for some time and you have good grounds to see your GP. Also it is advised to see your GP if your mood is affected. Whilst you are able to rationalize everything I still think you should see your doctor. Also someone else may come across your question, but I still think that you should see your GP. Take care.
BE
Benh90
29 Oct 2013
Thanks for your ongoing help. I will definitely see my doctor because this has affected my mood severely.
Just out of interest, who did you ask about treating side effects etc?
EM
Emeraldgirl
29 Oct 2013
Hello Benh90 I am pleased that you are going to see your GP. I asked my friend who is a nurse who currently works in ICU, but has also worked in many other areas like myself. I also asked my friend who is a Doctor who is currently working in anaesthetics. She was also a nurse at one stage in her life too. I also asked my friend to ask their friend who is a Pharmacist. However the Pharmacist was at the airport rather stressed as we had a storm in the UK over the weekend and everything as been delayed. In the UK if the weather changes everything falls apart big time! The Pharmacist is the one who mentioned speaking to the drug manufacturer and the simplest why to explain how long the drug will stay in your body. The rest of what I told you yesterday was down to my own research... Oh I have just looked up and seen that I have a book called Clinical Microbiology. I will look in that and see if it tells me anything new. If it does I will let you know. Take care and you know where to find me, if I can help I will.
BE
Benh90
30 Oct 2013
Just to let you know, my white blood cells were raised when I got my blood checked. The doctor thought it was the prostatitis I suffer from, but I have never had raised white blood cells before. I think there is a link there. Also my knees are hurting more, feels like the joint is hot. Bad stuff this!
EM
Emeraldgirl
30 Oct 2013
Hello Benh90 Lamisil can lower your white cell count which would make you more sustainable to an infection.When are you due to see your GP?
BE
Benh90
30 Oct 2013
Yeah that's why I was confused. I have not made an appointment yet. I will make one today.
Slept quite a lot better last night, dreams not as intense at all. Still struggled to get off but once I did I was out for a while. Took 400 mg ibuprofen before bed. My hands seem to get better by the day, don't know why my knees haven't, although they feel better this morning.
Awake very early again, which isn't like me.
Felt a little bit ill last night, like sickly. That occurred after trying to itch the inside of my ear, which is a bit sore.
I hope the sleeping part and my hands are a good sign. I will still make an appointment with the doctor though
BE
Benh90
30 Oct 2013
I have an appointment for tomorrow morning
EM
Emeraldgirl
30 Oct 2013
I am pleased that you have an appointment so soon. It sounds like your still moving in the right direction. I would like to be kept breast of your progress if you don't mind of cause. Take care and I hope that you have a better day today.
BE
Benh90
30 Oct 2013
Yeah I will definitely keep you updated. I tried to post a couple of external links on here for you to read but they've moderated my comments.
I think the whole thing about lamisil and other drugs has something to do with the cyp2d6 enzyme, and that different people have different levels of that enzyme (or something) making them more or less likely to have adverse effects. It seems doctors should actually be testing that enzyme before administering drugs (which is obviously irrelevant in my case because I self administered).
Back to my case and I am in a slightly more normal mood tonight. Still feel pretty weird but I feel normality kind of returning. I know this is not totally the case because I have felt pretty anxious at times today.
What I have noticed is that my hands go very red with heat. They are irritated around the joints and I can only compare it to what I get when I've had a virus, which is very similar but would always be over by now. My feet are the same. My skin is also a bit itchy in general.
EM
Emeraldgirl
30 Oct 2013
Hello Ben. cyp2d6 enzyme fab research. I didn't come across anything like this. DC will almost not post a website if not of their own making. The itchiness and high colour could be a reaction to something. My Fibrofog & imsomnia is getting in the way of what I want to say. Good luck at GP.
BE
Benh90
30 Oct 2013
That's fine. And thanks, could be worth a look into. I found some articles arguing that drugs that are metabolised by that enzyme run the risk of building up in your system and causing problems.
I've also heard that insomnia can be caused by allergies. As I said, my white blood cells are up, which the doctor at a&e thought was due to prostatitis. Although doctors have never found any evidence of infection in my blood or otherwise when investigating the prostatitis. I read of someone who seemed to have an allergic reaction (hives etc) to lamisil whose white blood cells were also up.
BE
Benh90
31 Oct 2013
Slept slightly better again. Fell asleep on the couch at 10 from exhaustion, went up to bed and slept through til half 5 with not a single dream. Perhaps it's because I'm tired, but also it must be because the drug is slowly leaving my system. When I tried to back to sleep, I couldn't really, ended up having a few weird thought dreams. But the drug is still in my system so I can sort of accept it, although it does worry me and my mood is still affect. That said, my mood can feel a lot more bearable by the day. More so in the evening, but yesterday I still had pretty anxious/ weird moments that didn't feel good. I can tell it's lessening though, very slowly.
My hands, I think they are better again, hard to tell. I thought they felt better when I woke up. My joints are generally still hurting though. Going to the doctor for half 10 and I'll let you know how it goes.
EM
Emeraldgirl
31 Oct 2013
Good Luck
BE
Benh90
31 Oct 2013
Right, went doctor's office. Strange anxiety came over me in the office. Not nice.
Doctor didn't really seem to know anything about the drug and seems to think I shouldn't be having side effects now. I explained to him about the 8-16 day clearance and he seemed to accept it. He said he strongly believes I will get over it. He tried to say the anxiety was just anxiety, but I insisted that it was totally different. I did feel pretty dizzy on the way over to the doc's office.
He offered me some antihistamines for the skin itching that are the same as piriton. Turns out they are a strong inhibitor of that enzyme so I will probably leave them and just if things get better over this next week. At this point next week it will be 17 days. Can't say I'm not worried about extended side effects.
I'm kind of feeling more normal. It comes and goes. I try to remind myself how bad I felt two days ago and that normality comes back more regularly. It's just I get worried as the weirdness/anxiety comes back over, less regularly and less intense though, I suppose.
Hoping the dizziness and whatever calms down as I get more rest. Lack of sleep seems to be affecting me pretty badly. Rest is coming back so that is a good sign. I suppose being so tired could affect me for a while after I rest alright. I still only got about 6-7 hrs last night. Not that much considering how tired I have been. Can't wait until I can actually put my head down to drift off instead of waiting until I'm exhausted!
BE
Benh90
31 Oct 2013
Sorry I've not explained myself that well there. It will be 16 days this point next week. Bit of a make of break time I suppose!
When I told the doctor about the 8-16 days he said 'well you're in the middle of that then' and conceded that I'm probably pretty sensitive to the drug.
My hands are definitely a bit better today. Also the doc said there's no fluid around my joints but my knees are red and he will check for inflammation in some bloods he took today.
EM
Emeraldgirl
31 Oct 2013
Hello Ben Inflammation that was the word I was looking for yesterday. Not totally surprised at your doc response, but at least he gave you the 'once over' and took bloods. I have not read your profile, do you live alone? could someone stay with you or you with them for a few days? finding it difficult to type. Computer made of metal I have Fibromyalgia, cannot touch cold objects oversight on my part when purchasing in the summer. May switch to phone. Anyway you take care and we will correspond again tomorrow. Sleep well if you can. Ps can you give me a clue that will get pass DC as to where you found the enzyme info.
BE
Benh90
31 Oct 2013
No I live with my family and they have been really helpful.
I feel pretty much normal for the first time tonight. My hands feel a lot better too. It's sleep, my fluctuating mood and dizziness that make me feel odd. That said, things seem to be settling down a little bit.
The articles I found are a bit sensationalist but if you type in 'cyp2d6 psychiatrist whistle blower'. The article is on a site called bibliotecapleyades, whatever that means. There is an article linked in that article. They are sensationalist but I have read about different people having different levels of that enzyme/ different levels of activity. Many antidepressants are metabolised with that enzyme, and it seems like that may be the reason some people have bad/ psychotic reactions to the drugs metabolised by that enzyme. It looks like many recreational drugs associated with 'psychoticness' are also metabolised with that enzyme, such as MDMA and cannabis.
EM
Emeraldgirl
1 Nov 2013
Thank you for the info. Pleased that you have family support. Take care
BE
Benh90
1 Nov 2013
You weren't joking when you said you suffer from insomnia! It is really a terrible thing. Have you ever tried melatonin? Apparently it can be helpful.
I slept a bit better last night. Fell asleep on the settee again around 11. Went to bed, woke up at half five and managed to actually go back to sleep for the first time. I did have one weird dream, but I get the sense that is because I slept more naturally. It was much less intense. It was when I tried to go back to sleep that I had weird thought dreams again. Woke up from that rest feeling kind of hungover and really tired. Really hope that goes, as that was what that woman in that thread suffers/suffered with for a long time. I am still exhausted though so.
My joints are still painful, but my hands continue to improve. My elbows have improved too a bit and I think my knees are getting better slowly. That said I don't really want to get too excited because I evidently still have weird things going on.
I still feel under the effect of the drug, this is the 10th day now though, and I keep getting better every day. I know I may well have some weird/anxious and maybe dizzy points today though. Really scares me that people can have these problems long term to be quite honest.
I can't really describe, but the dizziness exhaustion and lack if ability to properly rest are all associated with this weird sensation of 'rushing' in the back of my head.
I hope I get over all this stuff cos I'm pretty anxious about a drug affecting me like this for this length of time.
BE
Benh90
1 Nov 2013
What do you think of the side effects lasting this long? Pretty weird really.
Everything's still dying down but I'm still worried, although it's all much less intense. Just makes me feel weird that I can't rest for that long and the weird dreams, moods and sometimes thoughts. Feels pretty unnatural.
Also I forgot to say that I had armpit pain and still have a bit of a sensation under there from time to time. I've not had pain under there very often until now.
BE
Benh90
1 Nov 2013
As in, until taking lamisil
EM
Emeraldgirl
1 Nov 2013
Hello Ben - Getting anxious is not going to help matters. We know that this drug stays in your system for a long time. The drug that you took is an anti fungal drug. This is a powerful medication with serious side effects as you now unfortunately know. Celebrate every day that you improve. Don’t forget that the result of the blood test may shed further light on things. The medication that you suggested for my insomnia is not available in the UK. I have become an insomniac as a result of reducing one of my medications in order to have enough to see and recover from seeing my specialist. As my GP keeps stopping, rationing, and sanctioning this drug I am forced to stock pile it. By not doing anything I don’t require as much of it. So after the 15th of Nov I should be sleeping like a baby!
BE
Benh90
1 Nov 2013
Melatonin? I was under the impression you could buy that from health food shops?
I get you! I'm not too sure what the blood tests will say. I am happy that I'm improving just worrying how long it goes on. I suppose it's all good news and should mean that if I'm getting better every day, I should return to near normal at the very least?
BE
Benh90
1 Nov 2013
Sorry I probably sound pretty self involved. You do incredibly well to help through illness and insomnia and I'm very grateful for that.
EM
Emeraldgirl
1 Nov 2013
Hello Ben - you are not self involved, It is a good thing that you are monitoring your symptoms progress. What I am saying is that slowly you are moving in the right direction and we know that it is going to take rather a long time. You just want to get on with your life as you did before and I feel that you will, but it is going to take time. Are you in a band? For me it is different. I was an RN so it makes things a lot easier. Plus I am disabled and because I understand my disability this also makes things easier too.
BE
Benh90
1 Nov 2013
Fair enough! When you say a rather long time, do you mean more than the 16 days it takes to get out of your system?
Sorry to keep asking questions. I know that it's impossible for you to know, but I'm just trying to understand what you think.
Yeah I'm in a band, I'm just waiting for my hands to fully calm down and I will get back into the swing of playing every day again.
I've missed a week and a half of uni with this, but I have a week break now which I think is well timed as I should be more up to it by the time I am back in uni.
BE
Benh90
1 Nov 2013
To be honest I have wondered if it would take a while to get back to normal. Yeah every day gets a bit better, but like you have said I've have some pretty serious side effects, I might have insomnia for a while or anxiety or both. I suppose it's just a matter of waiting in and seeing.
EM
Emeraldgirl
1 Nov 2013
Correct, we just have to wait and see, plus wait for blood test to come back. I still think 16 days, which is a long time for any drug to work it's way out of someone system. I thought in the US you call Uni Collage... But you may not be in the US! Perhaps I should ask for your autograph now before you become famous.
BE
Benh90
2 Nov 2013
Thank you for your honesty!
Continued improvement again. You may think I'm silly but I had a beer last night. Reason being is I actually read up and alcohol is an inducer of that enzyme. I only had the one and I slept like a baby, woke up a couple of times but slept until half past 10. (For anyone reading this, I don't encourage you to drink beer while suffering these side effects, due to the involvement of the liver in handling lamisil).
Joints and hands continue to get better; they're still not feeling that great though. I'm hoping another week or two and my hands will be totally normal. Really hoping!! I need them to be mostly ok before I can start playing guitar again really.
Yeah I am from the UK, but I'm sure you just help so many people that you for off that I told you!
Maybe you should ask for my autograph! Just joking. But my band were just starting to get somewhere as this started. Really hoping the arthralgia is self limited, which I keep reading is the case.
EM
Emeraldgirl
2 Nov 2013
Hello Ben – That’s all you will get from me is honesty (I was trained that way). Oh you told me you were in the UK. It’s my Fibromyalgia it has a component to it called Fibrofog. It affects me in that I forget what I have read. For example you told me that you were a guitarist, but I don’t remember reading that bit. I only saw it on the day that I asked you if you were in a band! No wonder you know my nocturnal habits! Well I am pleased that you got your head down for a while and that you continue to move in the right direction. Will I ever see you on the X factor? Only joking, don’t watch it. Have a good day.
BE
Benh90
3 Nov 2013
Haha. I don't really watch it either, the judges are full of crap and it's really not my kind of thing!
Slept fairly badly again last night, woke up from weird dreams at half 5. Went back to sleep and had loads of weird dreams. They feel more like normal dreams now though, instead of hallucinations, and they don't feel as disturbing. However, they are still pretty weird.
My hands and joints continue to get better. I'm pretty tired though, which adds to the slightly surreal feeling I have. I probably could/should have gone back to sleep because I feel I was physically able to, which is an improvement. I just wanted to get up and not have more weird dreams! I've always been one for weird dreams anyway, I'm just having loads of them and they're still slightly more intense than normal ones.
I think it is still going pretty strong in my system. I wake up feeling slightly hungover and quite thirsty.
I will keep in touch with my doctor about it all.
EM
Emeraldgirl
3 Nov 2013
Your should have had a largar - only joking! If it makes you feel any better I have not slept at all yet. Was listening to The Jam. Ask your parents who they are or look on line! Well it's just the dreams now.Everything else seems to be moving forward. I hope you have a better nights sleep. Talk again tomorrow.
BE
Benh90
4 Nov 2013
Yeah I know who the jam are! Shame that you can't sleep though.
I got 6 hours last night. I could have gone back to sleep in the morning but everyone was up and being noisy. 6 hra is really very little compared to how I used to sleep though, especially considering I'm pretty exhausted as of late.
My hands seem to get better every day but my knees and elbows don't feel that great. Right elbow feels a bit burny from time to time. It's not absolutely terrible but I'm just wondering if I might need some intervention to stop the inflammation. What do you think? It's two weeks tomorrow after I stopped taking the pills. I only had pain in my hands for 2 days and then my elbows and knees developed arthralgia. It's died down in my knees since a matter of days ago, it seems to fluctuate though.
What's weird is arthralgia is just joint pain, but the insides of my palms have hurt, which is tendons isn't it?
EM
Emeraldgirl
4 Nov 2013
Hello Ben- Who diagnosed Arthralgia? Arthralgia is joint pain, but what do they think caused it? It is not a side effect of the drug. The palms of your hands have muscles, fascia (tissue that covers the muscles) tendons, nerves and blood supply. It is possible that palm pain could be referred pain your from your elbow. If you could describe the type of pain that you are experiencing I may be able to assess further. I wound not worry about it but continue to monitor it. Day 15 tomorrow make appointment to see you GP for a review and your blood test results. Sleep well (if you can)
BE
Benh90
5 Nov 2013
It is a side effect, it's on the leaflet and the doctor at a&e said how it can cause joint pain. He didn't diagnose arthralgia specifically, just said the drug can cause joint pain. Myalgia is also in the side effects.
The pain I have in my hands is soreness in a couple of knuckles and then soreness/aching in my palms when things press on them, or when I stretch my hands out to grab things or type. Like I keep saying, my hands appear to be getting better by the day although it's still worrying.
I had a few beers again last night. Bad choice really because I'm more tired for it. Had a load of weird dreams when I put my head back down. The quality of my sleep is probably better now but I'm sick of waking up (remembering a couple of odd dreams - relatively normal) then going back to sleep and having loads of weird dreams and then waking up early. This is some kind of insomnia/sleep problem for me, before this I would wake up 10am - 12pm at least because I'm not in uni until two, and even then I could sleep for longer. Not that I want to be lazy, I just mean that this has really affected the way my body is running. I feel pretty surreal today.
I'm still confused about the half life of the drug, I don't understand why 200-400 hrs is posted everywhere across the net. From what I'm feeling, that half life sounds more feasible.
EM
Emeraldgirl
5 Nov 2013
Hello Ben – Joint pain and Arthralgia are not quit the same thing. Joint pain is just that. It is not a diagnosis merely a description of the type of pain that you have. The cause of which is unknown and will not necessarily be investigated. Arthralgia (Art) is a joint pain but it is associated with tenderness, swelling, warmth, and or stiffness. Art is caused by something such an acute (following) injuries, or other ailments or chronic inflammatory conditions such as Osteoarthritis. The difference is that Art is a diagnosis because they know the causation. So the word Art would be used like this. Someone with Osteoarthritis you wouldn't say that they have JP you would say that they have Art. Myalgia is the medical name for muscle pain. Again it is not a diagnosis but a description.
Regarding your palm pain. Yesterday I mentioned all the structures in your hand. I did this for a reason. I believe that your palm pain is caused by Trigger points. Trigger points (TrPs) are nodules of tissue that can form in all the structures aforementioned (excluding blood and nerve supply). What they do is to cause the structure that they are in to contract. This is also why it hurts to stretch your hands. Whatever contracts bone will follow, hence the knuckles soreness. When you press an area in the palm and you feel that soreness/aching, that is where the TrP is. Everyone at some point thought out their life will get this somewhere on their body. Most never get a diagnosis as most (nearly all) doctors are not trained in detecting it. It should go away on its own. However fortunately for you I have a book on this. If it has not subsided in a few days I can advise you on what you can do. Please do not fret about this Regarding half life. My time frame is based on the figures that you quoted. Like I said how long it will actually stay in your system for is a complexes formulae and one needs to know the Pharmacokinetics of the medication in question. Like I have said many times the best person on this matter is a pharmacist. You can phone your local chemist for advice. They will do this for you know problem. Or ask your parents to do it. What I am proposing is that in addition to contacting a chemist and asking to speak to the Pharmacist, you see your GP for a review as you have exceeded my time frame. Which is a long time to still have a drug in your system – Take care
BE
Benh90
5 Nov 2013
Thank you for your continued help. Just dropping by with a bit of info. I know you asked me not to look and I will get in touch with a pharmacist and talk to my doctor but have a look at this:
'With a 250-mg/day dose of terbinafine, the elimination half-life is 16 days; at a dose of 100 mg/day, the plasma half-life is 22 days (3)'
EM
Emeraldgirl
5 Nov 2013
Hello Ben this is outside the scope of your knowledge and that of mine. I have advised you on whom to contact; in addition I did also say how long it will actually stay in your system for is based on a complex formulae and one needs to know the Pharmacokinetics. When you take a tablet each time, that tablet goes the following process: Absorption, Distribution, Metabolism and Elimination. The two half life info on Terbinafine above cannot be compared to one another as the 250 it just says elimination. Is that total or just from the blood and or urine? The 100 is looking at elimination from blood only. What about in ones urine. Do yourself a favour and just talk to a pharmacist.
BE
Benh90
6 Nov 2013
Ok sorry to mither. As you can tell I am a worrier, but this stuff is just not right at all and is quite concerning. Going docs today, will update later.
EM
Emeraldgirl
6 Nov 2013
OK
BE
Benh90
6 Nov 2013
Blood tests showed nothing abnormal, that must also mean that my white cells are back down to a normal level. The doc said to come back in another two weeks if I'm still not right. I contacted the pharmacy who sold it me and they said the half life is 200-400 hours. The doc then said that means it will be 800 hours out if my system fully, because 400 to half, then 200 to a quarter, then 200 to zero. Interesting that I seem to get different evaluations of half life from different people. That would mean 32-36 days. I really hope so.
The joint pain keeps improving, which is good.
BE
Benh90
6 Nov 2013
Still sleeping badly and there are quite a lot of weird dreams, just not as intense. I find it hard to go back to sleep once i have woken up, that weird rushing feeling/ strange thoughts come over me. I know it sounds psychosomatic, but it feels very real.
EM
Emeraldgirl
6 Nov 2013
Hello Ben- Bloods OK. Doubling the half life and saying 38 days is a bit disappointing as this is just an estimate again. That said, you are moving in the right direction. With regards to sleeping did your GP not consider a sleeping aid? I do not thick that your dreams are psychosomatic, but I do think that your inability to get decent sleep needs addressing.
BE
Benh90
7 Nov 2013
Yeah it is disappointing, I will probably have to ring around to found out properly about the half life. What's confusing is in that comment I linked on here, 'matt_grey' seems to think the terminal half life is something like 150-odd days. Anyway I know I am speculating and it doesn't help at all.
I think the doctors just want to leave me to it to see if I recover so they don't have to give me any sleeping pills. It's getting pretty bad though, I've been awake since before 6 today and I'm still having odd dreams. My joints still hurt too but they always seem to improve throughout the day. I keep falling asleep on the couch. Last night, I woke up very confused which is pretty worrying! Even in the mornings I wake up confused but last night was the worst yet. Not good!
EM
Emeraldgirl
7 Nov 2013
Hello Ben - I think that your sleep issue needs to be addressed before you go back to Uni other wise how are you going to be able to study. I hope that you get a better night to night. If you do not make it to bed, try sleeping on the settee rather than the couch :0)
BE
Benh90
7 Nov 2013
I'd agree about the sleep issue but if it is going to take some time then there isn't a massive deal I can do about it. I'd be inclined to try some natural sleeping pills like kalms or something. Equally I don't want to put more stuff into my body when it's processing the Terbinafine.
I spoke to the pharmacy that sold me the pills and here is their reply:
'Dear Benjamin,
I think that you might be getting different answers to your question about the half-life because there is the elimination half-life and the terminal half-life. You are really concerned with the terminal half-life [200-400 hours], which is what we focussed on in our earlier e-mail. We cannot give you an absolute answer on how long the medication will remain in your body but we have seen drug trials where oral Terbinafine has been thought to exert an influence for at least 3 months after cessation of administration.
We cannot say that your symptoms will persist for this length of time as this is not something that can be predicted with any degree of accuracy.
It is good that you are in touch with your GP about your symptoms but we would also appreciate being kept informed of your progress.
Kind regards
Robert MacKay The Online Clinic'
EM
Emeraldgirl
8 Nov 2013
Good work Ben! 3 months is a long time but at least you know this. Kalms I don't think is for sleeping, but I am sure H&B will have something for you. Will need to do some research on terminal half life! Should we touch base every other day or something like that. Would like to know the outcome. Take care.
BE
Benh90
8 Nov 2013
Yeah it is a long time. Really hoping things die down in that time. My band is on hold at the minute as my hands/ joints still hurt. I feel tightness and pressure in my palms.
I slept a little bit better last night and managed to drift off until 8 after waking at 6. I've been in touch with quite a few people on the ask a patient website and it seems many feel a lot better after 6 weeks, although there was one person who took 2 years to get over it.
EM
Emeraldgirl
8 Nov 2013
Well lets hope that it does not take you 2 years. Regarding your hands and given what you do with them you need to think about treating them medically. The condition needs to be diagnosed. But what I will do is look in my book at home to see if you would be able to treat it yourself if not it's back to your GP to be referred to a pain clinic diagnosis and treatment. They may be able to assess and treat J-pain too. Get back 2 you tomorrow.
BE
Benh90
9 Nov 2013
Thanks for the advice. My right have almost feels normal, some tiny bits of tightness in there. It is my left that feels odd, although it appears to keep improving. My left palm is tight and there may be a tiny bump in my palm and a little bit of pain. I am concerned and will definitely tell the doctor about it, but hopefully it is a self limited side effect of this drug which wear off as the others seem to be doing.
Slept better last night, elbows and knees aren't as bad. As I said, right have almost feels normal. Hopefully all of it will clear. Any luck with you research? I appreciate you looking into that for me - you are a great help.
BE
Benh90
9 Nov 2013
Right hand*. iPhone decided to 'correct' me
BE
Benh90
9 Nov 2013
I just received this email off someone from the ask a patient site when I asked someone if their side effects went away:
'They did but it was a very long and difficult time. It's been now a little over a year -- most of the side effects have dissipated and I expect full or nearly full recovery. But it was a terrible year, full of pain, anxiety, etc. I suggest being pro-active. I eventually went on cymbalta for neuropathic pain and depression and after trying various things for insomnia settled
on a low dose of seroquel (now approved at low doses for insomnia). That combination for several months gave my mind and body time to heal, or more accurately, gave my immune system time to settle down. What you're likely experiencing is an immune mediated reaction to the drug. The drug is in your blood for about 10-14 days after cessation; in your skin for about 30-45 days after cessation; and in your keratin (nails, etc.) for up to 90 days after cessation. The immune system can continue to react to the initial exposure for six months or longer. I say all this having eventually gone to Johns Hopkins for treatment. So I'm not just talking off the top of my head. In any case, you won't die from this and you will get better in time. But it may take a good deal of time. I'll hold a good thought for you.'
EM
Emeraldgirl
9 Nov 2013
Hello Ben. Very insightful. Thankfully you do not have neuropathic pain nor depression, but I do agree with this person that the insomnia needs addressing as you need to study. In the UK & US we treat insomnia with antidepressant drugs because they are not addictive. There is loads of them, this is what I think that you need but it is up to you. Whilst this person is correct that you will not die from this, you may have along road a head. Re Palms - Not a side effect of the drug. Myofascial Trigger Points (full name) Develop in some people following usually trauma, but why some people get them and others don't is unknown. At this stage it is treatable. I think you have given it enough time to resolve itself and it has not. Improvement and relapse is common (there is a reason for this).
Like I said the condition is misunderstood by the medical community (A part from pain management) and often goes undiagnosed and patients are sent for incorrect treatment such as Physio which makes the problem worse. - Treatment = You may need professional help to treat trigger points (TrPs) in your palms. Both must be treated. Home treatment (Tx) of TrPs = Warm wax therapies used for arthritis is recommended. You will have to research them. Try for 1 week. TrPs Tx = Acupuncture. Don't know hho much it would cost. NHS TrPs Tx = Referral to pain clinic for Electoacupuncture (Similar to regular type, undertaken by a Dr) or Stretch and Spray. I have rather a lot to say on things that you should avoid etc. So I will friend you and you friend me a will send you more info.
EM
Emeraldgirl
9 Nov 2013
Sorry just noticed we are friends will send you more info soom
BE
Benh90
9 Nov 2013
What exactly is neuropathic pain?
I have been very depressed and anxious. I did tell you but i forgive you for forgetting since you help so many people while suffering yourself. Depression was absolutely awful for the first week - worst depressing ive ever had in my life.
EM
Emeraldgirl
9 Nov 2013
Neuropathic pain is caused by a problem with one or more nerves themselves. Neuropathic pain is often described as burning, stabbing, shooting, aching, or like an electric shock. With regards to the way you are feeling you need to see your Dr. Show them what you posted to me today. You need to go on an anti-d. Since you need to see your Dr ask to be referred to the pain clinic for your hands.
BE
Benh90
9 Nov 2013
Yeah. Maybe I do need to go on one, maybe because it will help me sleep too. I'm not that depressed now just feel very surreal from time to time.
In regards to the hand pain, it totally corresponds with this medication. It can cause myalgia, so maybe it's the muscles in my palm? I don't mean to fight you in that but I've never had it before and it suddenly happens with all these other symptoms.
Just spoke to someone who recommended me to check my gallbladder as a possible reason why I haven't handled this medication well. Sure enough I pressed in below my rib cage on the right and it is quite sensitive!
EM
Emeraldgirl
9 Nov 2013
Your Dr will only prescribe an anti-d for insomnia for the reason that I said even if you are not depressed. Myalgia is not a diagnosis. It is a description of ones pain. What is causing the Myalgia? I say TrPs based on your symptoms. They are the root cause of many peoples pain and much more.
BE
Benh90
11 Nov 2013
I'm not sure I want to take an anti depressant to be quite honest with you. I have a pretty bad distrust of pharmaceuticals at the moment, and not only that drugs can have a reaction with lamisil for up to 3 months since it's in your system that long - especially trycyillic (spelling) antidepressants that are metabolised with the same enzyme.
I think, like the man I last spoke to, I am having an immune mediated response to the drug. Hence the insomnia that still continues and the other strange symptoms. My joints continue to get better but still nothing that has changed is normal. It's now about 3 weeks since I stopped the drug. Maybe it does stay in your system for a long time, but I'm not just assuming that this 3 month mark means I will suddenly be ok. I believe my immune system is responding to the drug and can do for some time.
The advice from the man who definitely sufferered an immune response is to ride it out, but also to take something that will help me sleep. He took pharmaceuticals for depression and insomnia, but that was months after his initial exposure.
Now if I'm honest, if I'm going to use anything to help me sleep, I will use something that I am familiar with, and that will probably be a very small amount of cannabis. Reason being it will not cloud my judgement compared to if I was to have a bad reaction to an anti depressant. Also, it is slightly immunosuppressant. The combination of it actually helping me sleep, mixed with the fact it is slightly immune suppressant should help everything calm down. I know you can never condone that but I will let you know if I use it. The insomnia is still going strong so I need to do something about it, and I don't really want to take more pills, many of which have the same side effects I am having now; strange dreams etc. I need sleep in order for my immune system to return to normal.
Also, the man who had the reaction said his levels of b6 were off the charts, causing a lot of his problems. I will get this checked.
BE
Benh90
12 Nov 2013
Ideally I don't want to use any drugs to help me sleep though of course. I don't really know what to do about it all.
I slept better last night, think I got a good 8 hours or more. Still feel pretty weird though, I can tell it's not normal rest. I don't want to get too excited about sleeping so long though, the day before I was sick with exhaustion from not sleeping, so that will have aided me in sleeping last night.
The joint pain continues to get better. My left palm is still tight though, my right palm is a little bit tight too. Any news on the trigger point stuff?
Thanks
EM
Emeraldgirl
12 Nov 2013
Hello Ben. I am pleased to hear that this are progressing. Despite what you may think and the fact that I have not ever taken it myself if 'smoking the herb' will help you then do that. In the US they have medical cannabis, we do not, although I am told it is not as effective as inhalation. Regarding TrPs. It depends on if you wish to go for, home treatment or acupuncture (not on the NHS).If you go for one of these treatments then I have some hand and finger stretching that you can do, but first you must relax the muscle, tendons etc before you can stretch. To do this you need to do one of the above first or the herb might help. If you go to a pain clinic then the home stretching is useful in between appointments (which should be weekly). The longer you leave them the harder they are to treat and can become chronic. There is no cure for chronic TrPs. That is what I have and I am also starting to get them in my hands.
I am due to see my specialist this week so I will be asking for a referral to the pain clinic for this. I would like to know how you manage to text on your iphone. I cannot do it without hitting the wrong keys. This is also the same for my galaxy which has a bigger screen!
BE
Benh90
13 Nov 2013
Yeah I would very much like to know about the stretching exercises please!
Well I used a very small amount of the 'herb' and slept like an absolute log. I can't really express how crazy that is considering the severity of the insomnia I have been suffering from. There's something about using it when you're tired really highlights your tiredness and helps you get the sleep you need. I can't remember if I've already said this as well, but if this is an immune mediated response, I believe smoked cannabis can be slightly immunosuppressant. Maybe I'm stabbing in the dark , but maybe the sleep and slight immune suppressant qualities can help my body wind back into some kind of normality.
Two things though; one is that I'm very groggy, perhaps to be expected after drugging myself to sleep after such a long period of no rest (I also went to bed too late because I had it at a friend's house). The other thing is that I'm pretty sure certain elements of cannabis are metabolised by that enzyme I said about.
The rest though , I fell asleep and woke up in the same position, woke up once and went back to sleep. Had a deep 8 hours rest. The other good effect for me (that I had when I used to use it more regularly), is that you barely dream when you use it to sleep. It's kind of a triple whammy for me; instead of waking up relatively from strange dreams or an over active mind, I've had a normal amount of rest. I do wonder why it isn't used medicinally over here, perhaps it would wipe out the uses for many drugs, since it works so well for a variety of different uses. Then there's all the different strains that have different uses. I think people who have experience in using cannabis should have the option, I've heard drugs like 'ambien' (sleeping pill, not sure of the proper name), can have some really unusual side effects; surely sticking with what you know can empower patients. Anyway I'll stop goin on like a hippy!
In regards to typing on my phone; it's actually hard word and does a good job of correcting my mistakes! Haha. It's a bit hard at the minute though with my palms being kind of sensitive!
I've noticed that sometimes when my skin gets irritated and I scratch it, it goes bright red. I've had a couple of moments when red marks have just popped up on my hand. Like irritated/ hot marks. Never had this before. I do believe it is some kind of immune response to the drug. Feels like an allergic reaction would. My palms a also go very red and blotchy in heat , unusually blotchy .
I hope this crap just keeps fading, although that skin stuff is as strong as it ever was, which although it's not awful, it can be fairly unpleasant. There's some weird stuff going on with my body at the minute. Hopefully in a couple of months it'll just have faded into nothing.
EM
Emeraldgirl
14 Nov 2013
Hello Ben. Cannot type much. My palm hurting too. TrPs need treatment first before you can stretch them. To stretch before treatment will make it worse. You must address you hands urgently now. The redness and sensitivity of your palm could indicative that your nervous system is changing the way it deals with pain. This is not a good thing. It does not mean that its change is imminent but it may be starting to change. This also happened with my palms for a year prior to developing Fibromyalgia (FM). That said I did not develop FM in my hands or palms.
BE
Benh90
14 Nov 2013
That is quite worrying. I do not fully understand what you are telling me though, and I'm not too sure what the docs will do for me. Although I do want to see a doctor again because things are far from normal.
I think I am having an immune mediated response like the person I spoke to. I'm not too sure if the skin thing is related to the palm pain, I think it's more related to the toxins from this drug/ allergic or immune reaction.
'This condition is very complex to answer and there are three differential causes,I know this because I suffer from this.I have seen cardiologists, rhuematologists,and finally a neurologist.However non has a adequate reason for this condition until I read a article called vegative vascular dystonia or in another name,autonomic dysfunction.Basically the nervous system is breaking down.Unfortunately the reasons can be kidney problems,neurological problems genetic or brought on by kidney problems.It should be noted however reducing content of protein in the daily diet and maintaining hydration helps kidney function.Otherwise it could be raynauds phenomena or over- intoxication from medications.I say this because if you have ever seen someone who is allergic to meds they break out in a rash as the liver rejects the compounds as failure to cope exhibits the rash.So three possibles -Raynauds-allergy-Vegative vascular dystonia?'
EM
Emeraldgirl
14 Nov 2013
Don’t worry. Person is indicating that one nervous system can change causing one the 3 conditions stated Raynauds-allergy-Vegative vascular dystonia. None of which you have. I have said the same thing, but I have not stated what it may or may not lead to nor what can cause it. I said the redness of the palms of your hands can be an indication of nervous system changes that can take years to become diagnostic. Treat palms early as easier to treat. Leave harder to treat. By seeing pain clinic can assess all your pain and treat if need. If correct treatment given or cause resolved nervous system will B OK. Palms will not resolve on own. Need treatment.
BE
Benh90
14 Nov 2013
Thanks for the reply. What is the treatment though?
EM
Emeraldgirl
15 Nov 2013
Hand pain bad.Typing hurts.See previous for TrPs treat. Nervous-s treatment = resoving pain issues
EM
Emeraldgirl
27 Nov 2013
Hi Ben How R U? Hands still playing up. If yours R 2 have advice that might help.
BE
Benh90
27 Nov 2013
Hi again. I did message you but you mustn't have realised. Yeah my hands are still acting up but feeling better as time goes on. I am having acupuncture now, had a session today. I want to do your stretches afterwards, just did some light finger stretches instead. I am sleeping now and feeling better in myself although still have weird dreams just a lot less intense. Wake up feeling weird quite often. Can be unpleasant but I'm just getting on with things as best I can since it's all slowly improving.
It'd be good to hear your advice?
Thanks a lot EG.
EM
Emeraldgirl
27 Nov 2013
Pleased that you R getting treatment. R they doing acu to your palms as well? If so then I will just give you the correct hand stretchering 2 do. But will take me a while to type as my hands R still dodgy. I went private due to have major change 2 med regime so hopeful of some improvement.
BE
Benh90
28 Nov 2013
Yeah I am having it in my left palm and would like to know the stretches.
I appreciate you doing that. Don't worry if it takes a little while
EM
Emeraldgirl
28 Nov 2013
OK
BE
Benh90
7 Dec 2013
I have acupuncture on Wednesdays so it would be good to know the stretches before Wednesday if possible?
EM
Emeraldgirl
7 Dec 2013
I know. Hands not up 2 the job due to have treatment on Friday. Went private in the end. The fastest way would B 2 give me your email address in an encrypted way and I will email the relevant pages 2 u. R you finding any improvement? is it on the NHS?
BE
Benh90
7 Dec 2013
Ah ok, sorry to hear your hands are still not right.
My email is mufcbh1008 at Gmail dot com
I am having treatment from a local acupuncturist, I am paying for it. My general condition continues to improve and I'm pretty sure I notice my hands improving with each treatment.
I had a weird one last night though, it was the first night I haven't used any cannabis to get me to sleep. I'd had a few beers after not eating much and fell asleep on the settee from 7ish to 12. Went to bed and was awake until 2, then had lucid dreams that again were disturbing, woke up feeling quite down/distressed and I had generally rested quite badly. The cannabis helps a lot with sleep and the bad dreams too, but I have woken up feeling distressed previously once or twice even after using it to sleep. It is definitely the lamisil causing this.
My palms can still go very blotchy and red, usually in warm environments. My skin can go quite red too when I scratch it or massage it. I have also been quite fatigued.
I saw my doctor and he seemed fairly unconcerned about it, he said that the drug stays in your body for a long time and that as long as the symptoms are lessening, then my body is recognising that the drug is declining in its amount, which is a good sign.
My knees and elbows gave pretty much recovered now, I get an occasional pain in them but they are almost normal.
EM
Emeraldgirl
8 Dec 2013
Hello Ben will mail Sunday. Keep an eye on your hands, not sure if I agree with your GP, but I don't think that it is something 2 worry about at this stage. Take care
BE
Benh90
8 Dec 2013
Sorry I made it sound like my doctor commented on my red palms, I forgot to tell him. I will send you a picture of my hands when I get your email
EM
Emeraldgirl
10 Dec 2013
Hello Ben - did u get my mail?
BE
Benh90
10 Dec 2013
Yes I did, thank you very much for that!
One thing I wanted to say to you is that I am still suffering from anxiety, depression and bad fatigue especially when I wake up. It's definitely because of the lamisil. I'm just trying my best to get past the first 3 months and hopefully I will be a lot better by then
EM
Emeraldgirl
10 Dec 2013
I hope so too. Take care and keep me posted.
BE
Benh90
10 Dec 2013
Thankyou EG. I will do
EM
Emeraldgirl
10 Dec 2013
I was just typing 2 u again when U messaged! When U C your acu ask which muscles they are treating and ask how many sessions they think U will need. The aim should be to get U 2 a stage where you no longer need the treatment. By knowing the muscles I can send u more stuff. It is important to relax the TrPs and then stretch the muscle. A better treatment is Myofascial pain release as it does both. U can have it done to your hand. I will B having it done on Fri so will let U know how it goes.
EM
Emeraldgirl
14 Dec 2013
Hi Ben - Had first session of myofascial pain release (MPR). My treatment plain in order is MPR, Acupuncture then hydrotherapy. Thus what I think you need for your hand is MPR then if needed acupuncture. Give me an update on everything and I think that my advice will be better with the new knowledge that I have.
BE
Benh90
28 Dec 2013
Hi EG, sorry I haven't been in touch, I've been very busy with uni work and then Christmas.
I wanna say thanks again for continuing to help me. I have used those stretches after acupuncture and they have helped.
I actually read some of my old comments on this thread, it's scary and depressing to think what I have gone through.
This is my overall update:
still using cannabis to sleep. Im not sure if I need it to sleep, but it helps. My thought dreams when entering into sleep are still inclined to be strange and sometimes kind of depressing. Also the dreams I have are inclined to be depressing and even when I don't dream, I sometimes wake up feeling like I've left a bad dream - like the depressed feeling carries over into waking life. Once or twice this has been very strong and has caused me horrible anxiety for days. I feel like the influence of the poison makes me inclined to be depressed, I can't really explain it any better.
So I'm not out of the woods in the mental department yet, although it has gotten a lot less intense and easier to deal with; that said it's still not normal.
I wake up feeling very tired, definitely suffering with something like chronic fatigue from the pills, but that's getting slightly better as I go along.
My knees and elbows feel 99 - 100% better. My hands can still have some aches and pains. My knuckles are a little sensitive, my right palm is doesnt feel tight at all and my left one is almost normal, though still a tiny bit tight. My hands are constantly getting better and I have been playing guitar once a week at least, I'm waiting until my hands are 100% before playing every day again though. It does feel like they are heading towards a full recovery, just slowly.
So the physical is a lot better (aside from the fatigue, that's slightly better), the mental side is slowly getting better but still hard to deal with.
Hopefully it'll notify you about this comment
EM
Emeraldgirl
1 Jan 2014
Happy New Year. DC did notify me about this comment but it got lost in my overflowing in box and my Fibromyalgia! In a nut shell U R moving in the right direction all be it slowly. Mentally and fatigue R your main problem. I can only repeat what I have previously said on this matter and that is maybe C your Dr about an anti-depressant drug or something to help U 2 sleep which will be an anti-depressant drug. Or U could ask 4 Cognitive behavioural therapy, but I don’t think that they will approve of the ‘herb’- Take care and let’s hope that 2014 is a better year 4 U
BE
Benh90
17 Jan 2014
Yea, in some ways the mental stuff is getting worse. I'm dreaming like crazy every night and the dream like feeling carries over into the day. I wake up so very exhausted and it takes all day for me to wake up.
The cannabis caused me to have a panic attack or something the other night, it's just made me feel twice as bad. The exhaustion is unbearable and the mental symptoms are bad too.
I'm going to the doctor next Thursday. I need some help.
EM
Emeraldgirl
17 Jan 2014
Hello Ben - Sorry that U have got worse. C'ing UR Dr is the right thing 2 do. Hang in there and keep me updated when U can - good luck
EM
Emeraldgirl
31 Jan 2014
Hello Ben - Just thought that I would touch base with you to see how you are doing.
BE
Benh90
31 Jan 2014
Hi EG, thanks for asking.
Well I had been feeling pretty awful, but I seem to be feeling a tad better recently. My dream activity is still pretty intense and I'm still pretty tired in general, but the past week or so it's been more tolerable. I don't feel as down anymore.
My hands are still not right but they continue to get better. My knuckles are sensitive but not as sensitive.
I went to my doc and she said the medication is out of my system and there's no chance that you can still have a reaction when it's out of your system.
That was the same doc who thought it took 4 half lives for it to leave the body. She is wrong, with every single drug it takes 6 half lives - how a doctor doesn't know this is beyond me.
She said the strange dreams and feeling down etc is all anxiety plain and simple. She didn't want to put me on an anti - d cos they can make your dreams more intense, so fair enough, my mood has lifted a bit anyway so that is good.
Anyway, she is totally wrong on all fronts (and to be honest, quite ignorant). Spoke to the American professor guy who had a bad reaction to only 5 pills ( one less than me), he ended up going to Johns Hopkins because he was suffering for so long. The docs there who specialise in auto immune disease said that he had immune mediated reaction that can go on for at least 6 months after the Terbinafine is out of your system. Turns out that the drug is in in your blood for 2 weeks, skin for 4 months and keratin for 6+ months and your immune system will go on reacting to it as long as it's in your system and can only settle down and reboot properly after it's all gone.
The guy who I spoke to I trust the judgement of. I have spoken to him for months and he has described his experience to me in depth. He has a phd and teaches at a uni. I've checked his email with who he is etc, so I know he is genuine and I trust his advice.
He had the same stuff with the docs. It is evident the drug can affect you for a long time, hence my slow and steady incline of the same symptoms.
I'm sure I will get fully better it will just take a while.
It can still be hard from time to time, havin crazy dreams and being quite fatigued etc so I might speak to a counselor to help me deal with it. I have some community counseling numbers.
In the mean time I have been trying to focus on getting on with life. It can be hard to get on with stuff having chronic pelvic pain on its own, let alone these side effects!
I will make sure I keep you updated from time to time.
Thanks for remembering about me. If it crosses your mind and I haven't replied in a month or two feel free to remind me.
Thank you very much for all your help!
I hope you're well and not doing too badly with your fibro
BE
Benh90
31 Jan 2014
Oh I can also feel generally dizzy fairly often. Whether it's looking at moving things like trains or looking sideways while walking forwards etc. that seems to get better with rest.
The fatigue now isn't too bad and if it keeps getting better it should be nothing I can't handle. But only a couple of weeks ago I had to come home from university I felt that crap!
Anyway, let's hope I keep improving which I'm sure I will
EM
Emeraldgirl
31 Jan 2014
Sounds like you've found someone who been through it to. It helps to know that you are not alone in what you are going through. Clearly you now know more than your Dr about this. Counselling sounds like a good idea, why not give it a try, that's all you can do. Well I hope that yo continue to move in the right direction. You now know this is going to take time, along time, but at least you know this. Ask the person who you have been in contact with regarding moving objects etc and see what he thinks. Anyway take care and we will touch base again soon.
EM
Emeraldgirl
25 Feb 2014
Hello Ben how are you doing?
BE
Benh90
25 Feb 2014
Hi EG, thanks for asking.
Well I have all the same issues but probsbly slightly less intense again. I still feel pretty unwell and the fatigue can be pretty harsh, my joints still hurt a bit, for some weird reason what feels like the tendons in my hands are sensitive. I know this isn't necessarily a side effect but tendonitis can be caused by enflamed joints (so I've read) and I've also read that lamisil just generally promotes inflammation throughout the body.
So yeah, I keep getting marginally better, but it's still quite an unpleasant experience and is still going on.
I generally don't rest well. I still have a lot if dreams that can feel pretty weird and sometimes be pretty disturbing and depressing! But they are nowhere near as intense as the dreams at the start of all this, the severity and intensity have calmed down.
It's now 4 months since I stopped the pills. It just shows how bad these pills are and how long they stay in your system. What a horrible drug lamisil is!
Thank you for asking though, hope you are feeling well.
EM
Emeraldgirl
26 Feb 2014
Hello Ben - 4 months is a long time. Have you tried anti- inflammatory drugs? Are you still in contact with that man who responded to your question. He can certainly advise you. Pleased that you are moving in the right direction all be it slowly. Take care
BE
Benh90
9 March 2014
Hi EG. No I haven't tried any anti inflammatory drugs, that does seem to be the standard for drug induced arthralgia, but my doc just said she'd make a note of it for my pain mgmt doc. Then I went and saw another doc at my gp surgery and forgot to mention the joint pain.
The trouble is I have so much stuff going health wise that I forget to mention some stuff. This chronic pelvic/prostate illness has so many undressed issues that I forget to even mention all of them when I do see the doc
EM
Emeraldgirl
9 March 2014
Hello Ben – Forgetting to mention things is easy 2 do, writing it down helps. Pleased that you have seen a pain Dr. I don’t recall you mentioning chronic pelvic/prostate issues. Hope everything is OK in this regard. Sorry to hear that you are going through so much.
EM
Emeraldgirl
8 May 2014
Hello Ben, just wondered how you are doing? I hope that you have continued to improve all be it slowly- Take care
BE
Benh90
9 May 2014
Thanks for asking EG, you're right, I'm getting better very slowly.
My hands are a lot better but not fully better, I can play guitar a little more but I think it's going to be 6 months or more before I'm totally back to playing how I was!
The tiredness has been really bad but I'm trying to do a bit of exercise, eat well and rest and that's helping a little. The malaise and fatigue aren't as intense as they were, it's more manageable now.
Still having intense and odd dreams but again that's not as strong. Still far from right though.
On top of this, I just found out I have a kidney stone! The joy keeps on coming.
I'm definitely more prone to anxiety than before the meds. My mind has been altered to a degree but is slowly returning to normal. My reading comprehension has been lowered and I have brain fog from the reaction and fatigue, but it's all letting up extremely slowly.
I think I will get back to near perfect, but I think it's going to take another year maybe before that happens. In the meantime it's just getting more manageable and I'm slipping into a little bit more of a normal life, although the fatigue would be too bad to be working etc!
I am doing resits at uni because the malaise had been getting the better of me. If I consistently go to bed at a good time though, that lessens a lot. I had a late night last night and I feel like it's set me back a lot, but that's the daily ups and downs for you.
I will keep in touch. It's been 6 months now. I think by October I will be feeling a lot better but possibly still a way off feeling perfect. It may take another 6 months to a year after that I think. I get anxious thinking that I won't get better, but as the Johns Hopkins docs said to the man who had the severe reaction, the immune system settles but it takes a very long time, but everything returns to normal after a while.
EM
Emeraldgirl
9 May 2014
Hello again Ben. It is good that you are moving in the right direction , but I must confess that I do have my concerns that you are not under the care of a Neurologist for your symptoms, even if it is that they are aware of you and concur with you. Sorry to hear about your kidney stone. One of my former stomping grounds when I was nursing, I uses to be a urology nurse. If you want info regarding this just let me know, I know you research things, plus you will be referred to a hospital of your choice. Regarding your resit at Uni. You come under the Equality Act 2010 it also applies to education. I would strongly advise that you read my meds are kicking, better go -Takecare
BE
Benh90
9 May 2014
Yeah I suppose you're right, someone should have an eye on my symptoms. I have to say my GP and other docs I've seen are pretty negligent in that they dismiss the notion that the drug could do this to me, one doc put it all down to anxiety (what a load of crap).
As you can see I have suffered some serious side effects and I've just been left to it even though I've explained all pretty much all of this to my doctors.
They also tried to tell me that the prostatitis I suffer is in my head for years. To be quite honest I have very little faith in the medical system when dealing with anythin slightly out of the ordinary. I was having severe pain at times from the prostatitis in my genitals and yet I was ignored for over a year as a hypochondriac. I asked the head urologist when the prostatitis would go away to which he said, 'are you in a relationship ?' I said no and bet replied 'when you're in a relationship next'.
He said I was worrying needlessly and I believe he was implying that my pain was in my head because I had anxieties about sex. With the prostatitis issue I have pain in my testicles when walking that builds and builds until I can't walk. I have had pain for hours after ejaculation (not so much anymore), and I have a lump that comes and goes on my penis. How much concern do the docs show about this? Very little! I've only just had a scan over 2 years into the illness which is what found the kidney stone - but that isn't what's causing the symptoms. I have faith in some of the health service, especially emergency medicine, but I've been utterly failed and ignored over and over.
BE
Benh90
9 May 2014
Just wrote a big long comment out and it says it's being checked by moderators. No clue why at all but I don't suppose I'll be seeing that on here?
Didn't share any links or swear or anythin
BE
Benh90
9 May 2014
What I was saying is that I'm not surprised my docs aren't concerned by my blatant neurological symptoms, they ignored the severe prostatitis symptoms I have for over a year!
I think you're right that I should have someone keeping an eye on my neurological symptoms though.
That said, the university lecturer from America who had a massive reaction to lamisil saw some of the best doctors at Johns Hopkins for autoimmune illness and they said that neurology and all will return to normal with time.
EM
Emeraldgirl
9 May 2014
Prostatitis can be cause by partial blockage of the flow of urine. Also this can cause Kidney stones. I would be interested to know how this diagnosis was made and what treatment you have received and are receiving. Also I would be interested to know what test you had that ended up finding the kidney stone. I have come across young man with urology problem dismissed by GP’s more times than I care to remember, sadly it cost one 25 year old his life. I am not saying that this is going to happen to you or indeed this is your case. I would advise seeing a neurologist privately, after all how much is your health worth. I think it best if you communicate by ‘ask a private question’, that way what you have to say will always come through.
