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Acute Serotonin Syndrome,Fentanyl,Prozac,Effexor XR
Acute Serotonin Syndrome,Fentanyl,Prozac,Effexor XR
Here is a interesting subject that I can say I survived?
I was treated for Acute Serotonin Syndrome in ICU for 13 days in Feb.-March 2007 as a result of a major ERROR.
I have a few questions about the treatment that was administered to me that seemed to have extended my recovery.
I do need to state that I DO NOT DRINK ALCOHOL. I am very proud to say I have been sobar 8 years
This started with a gross error when my doctor had me stop Prozac 40mg daily (on prozac 4 years) and start Effexor XR with NO washout period.
I was also on Fentanyl 75 patches for almost 10 months.
After only taking two Effexor pills with in a 48 hour period I was rushed to ER.
ER determine I did have Acute Serotonin Syndrome.
I was given cyproheptadine = serotonin antagonist and several Ativan injections.(fentanyl patch removed)
I was transfered to ICU and that doctor STOPPED the cyproheptadine treatment after 24 hours because there was no change in my condition (should have stopped with in 24 hours)
The doctor changed my treatment because he strongly believed that I was going through Alcohol DTs.
Over the corse of 3 days he had me treated with Ativan, Haldol, Versed ,and Morphine for pain.
I ended up with respiratory failer and was incubated for 7 days.
My husband, close friends told the doctor I DO NOT DRINK. In his notes he states this but also states he believes I was a "Closet Alcoholic"
Now here is where I am having alot of trouble understanding my treatment?
My lab work and other test should have been able to show my condition and the changes in my labs everyday (few times daily) with all the different drugs I was being injected with.
Being on Fentanyl, Prozac for so long, my system should still have these in because of how long it takes to wash out, and when stopping you should be weened?
The symptoms from suddenly stop taking Prozac,Fentanyl and the Serotonin Syndrome, plus the interactions of all the meds given to me because of my altered consciousness, confusion, myoclonus, ataxia, hyperpyrexia, shivering, pupillary dilation, diaphoresis, and hypertension? I guess what I am looking for is what went wrong with my treatment? What could have been done to prevent it from being prolonged and of course it manifested?
I realize that this is a subject (Serotonin Syndrome) that is hard to find alot of information about, find cases to read about and there are none that seem to compare to what I went through.
Any Thoughts? Questions?
I would be interested in hearing any.
People have the need to be informed~Not miss lead~medical facts are important learning tools~If you can help? Please do
Wow thats quite a story! Thank goodness you are here to share it with us! I have heard of Serotonin Syndrome. The thing is that most ER physicians are not aware of it b/c it can resemble drug withdrawls. I really think that if you had a washout period from the prozac this probably wouldn't have happened. Sorry wish I knew more..
Sorry to read about your awful experience - unfortunately, went through the same thing myself, though not as bad. Was on amitryptyline a bit for help with sleep, was having reaction, was misdiagnosed as some kind of brain problem (though it was obvious now that I was reacting to the ssri ) put me on trazodone, celexa and xanax for 3 days on top of that -no thought as to it already being in my system.. ended up in the hospital ER.. but fortunately they just stopped everything, as I had just started -thank HEAVENS... but, I know the pain -- and they're like, 'what happened'..! yes, they grossly misdiagnose this - thought I also had some major depression/crazy head thing going on.. though I NEVER had mental problems in my life, and only was originally prescribed ami because of sleep due to a different health issue... Unfortunate that they are so unaware - and am so sorry for all you have been through, that sounds terrible! I hope that you are recovering now.. I still have seizures/dystonia etc. from my reaction.. but sloowwwly improving
Acute Serotonin Syndrome,Fentanyl,Prozac,Effexor XR
May I ask you if you have any memory of ER and the hospital?
I have tried and tried and I have no memory of being taken to ER, and not really much memory of being in the hospital.
I can recall being wheeled in a chair to the room I was in after leaving ICU (but I did not know it was ICU)
I can recall my husband comming in to see me in that room, but when and what day it was I can not recall?
I don't even have much memory of being discharged, But they allowed me to discharge myself?
My girlfriend that took me to ER, was my representative because I was not aware of person, place, date etc.
The hospital never even called her or my husband for that fact to notify of my discharge?
My husband suffered from TBI in 2001 and ask the hospital to keep my friend as my representative / point of contact because he was afraid that he would not be able to make the right chioces for me. So my friend worked with my husband through it all.
It took me a few months to get myself to think right, my short term memory was off, but that is getting better.
I just can not understand why the doctor at the hospital would use so many different drugs on me with out looking at the whole picture?
My medical records even show I suffered a "Adverse Effect Anticonvulsant"
It was bad enough that I suffered a ADE from my family doctor that placed me in ER to begin with (was family doctor 18 years) WAS!
But to read what the doctor in charge of my care in the hospital did to me? (He was VERY BIOS)
I just can not express how I feel.
People have the need to be informed~Not miss lead~medical facts are important learning tools~If you can help? Please do
Again, I'm so sorry for what you've had to go through... I don't have much memory of that time, and very scattered memory from the weeks that followed. This, I believe, is very normal for a brain injury - since having seizures from the damage caused, it has also affected much of my memory and thinking since then - I don't have much of a sense of time and place, that still comes and goes. However, things are slowly improving, with ups and downs. I was almost in a coma state when I went to the hospital, if you were there, then I'm sure you wouldn't have memory of it - I don't think one would even want memory of it either! I'm sure parts of our brains shut down to protect ourselves, or were so damaged and couldn't hold memory well.. But it does get better, it just takes a long time to heal. I understand about the family doctor thing too - that's what happened to me, and yes, am changing the doctor!! It was amazing, after I was in the ER, then was out, the next day my family took me to see my reg. doctor, and she wanted me to stay on Celexa!!! good grief, so absolutely clueless, it is really really really sad. Prayer carried us through though, if I had taken that, I either would have gone into a full coma state, total seizures, or permanent brain damage, or committed suicide but my guardian angel was looking out after me I know. My family was like, celexa, for WHAT?? she's not depressed, never was, just trouble sleeping due to a totally different health condition! Shocks me so much, and it is really too scary to think about how close it was, I try not to think about it, just leave it in God's hands.. over time, we'll heal of the shock, and be thankful for having been so protected and survived to help others through our knowledge and experience... everything happens for a reason. Already, I have helped others, both friends, and even in my own family, by educating them on the dangers of these drugs, and comforted them as they had some scary side effects - and even convinced one person who was prescribed lexapro NOT to take it, as she didn't even want it in the first place... who knows how much anguish people will be spared!
As you get better, and feel stronger, I think it is vital to get more information on serotonin syndrome, research, and take it back to your hospital, doctor and ER and educate them. I know I'm not strong enough yet, but the time will come, and it really is our duty in a way if we can, because it very well may save someone else's life.. even the process of recovering, going back to your doctor, telling them again and again what happened, helps make them aware -- they are probably very very ashamed inside as to the extent of their mistake, and don't want to admit it - but the info will help someone else nevertheless...
Hope that you continue to recover well! Lots of healthy food, and prayer, and obviously being drug free is the best medicine !
You've probably already found this site, but if not, it's an excellent site for people recovering from serotonin syndrome/ssri reactions like us - plus lots of basic info on antidepressants themselves, how they work, etc.. It's at www.antidepressantsfacts.com make sure the spelling is exact) and the reaction recovery page is at www.antidepressantsfacts.com/reaction.htm
take care, love,
Last edited by elizabethmaria; 07-13-2007 at 03:26 PM.
Hi to all,
Noticed your topic, I have been through it and due to the fact that no medical assistance was given I have been left with many serious problems.
I understand you are not altogether too happy with the treatment/diagnosis, rightly so.
Anyway, just a bit of info relating to issues you've raised -; "adverse effect anticonvulsant" - what they have done...used the warning issued by the FDA in 2005 re:fentanyl blood levels can rise to toxic levels in certain circumstances and/or alter the characteristics of some medications. You don't mention a anticonvulsant?
Do you have the medical records that show the list of symptoms and the diagnosis SS?
If you are in the States you have options available but as you say it's obtaining the info.
If you need help or anything just let me know, sorry I'm not in the US.
Acute Serotonin Syndrome
I know it's been a while since this subject has been discussed.
I had a baby in October -- and was put on sertraline a week after delivery because I was exhibiting signs of PPD (it was my 3rd baby, and I had a history of severe PPD following the first two deliveries). I began to feel better within a few weeks, and the doctor continued to titrate my dosage up as I told him how much better I was feeling. The dosage was up to 150 mg by mid-December. At this point, I was still seeing my OB/GYN for transient post-partum hypertension since I had elevated BP's at my 6-week postpartum checkup. Everything seemed fine, overall -- with the exception of the BP issues.
Then, in February, I began to experience dizzy "spells". I just shrugged them off, as they were just a nuisance. Then, two months later, the dizziness became debilitating, and I developed nystagmus (involuntary eye movements). A couple days later, my body was jerking involuntarily and my reflexes were unusually brisk. There was also excessive sweating, nausea, and some "minor" memory loss. I am a nurse -- so checked my BP while at work when I felt particularly miserable. It had gone up to 197/117! I somehow made it home from work (shame on the charge nurse for not sending me directly to the ER when noticing how badly I was doing!). When I got home, I was confused and did not make sense when trying to talk to my family. My husband, a pharmacy student (talk about Providential!), recognized I was in serious trouble. He contacted a pharmacotherapist at his school (who specializes in psychotropic drugs and has treated many women with postpartum depression), who told him I perfectly fit the criteria for acute serotonin syndrome. My husband then contacted my OB/GYN and shared his findings. Thankfully, my doctor is a humble person who is open to such things. He decided to wean me off the sertraline and start Buproprian instead.
While I am much better off than a week ago, I still feel pretty messed up. I am experiencing intense dizziness, feel like I am "drunk" (though not drinking at all!!!), and am struggling with some numbness in my tongue, lips, fingertips, and various other spots. I am still having problems with myoclonus and tremors -- especially when at rest.
Has anyone else out there struggled like this??? I am grateful to be on the mend -- but am discouraged at how long it will probably take to recover (the specialist my husband spoke with told us to expect it to take 6-8 weeks). I feel very alone since this syndrome is so rarely discussed by physicians -- and seems overwhelming to those who have little/no experience with it. I feel that I should be monitored somehow -- as the symptoms are still pretty severe (at least my brain is back, and I'm not confused anymore!). My physician is likely unaware of how badly I feel -- but if I called to let him know how poorly I was doing, what would be done? I know that this is a very tiring process for those who are taking care of me -- but I must be more tired of it than ANYONE!
Thanks for "listening".
HI. I had SS twice with no care. I almost died. I now have muscle wasting and pain all over my body. I am trying to get a doctor to listen to me. I am getting the door slammed by many doctors as they do not believe the drugs caused this much damage. I am scared as I do not have treatment and I continue to waste away. I am not on the drugs anymore, but I still have problems. I had the muscle twitches, spasms ( still get this), jerks as well. I believe this has caused permanent nerve damage for me. I am 27 years old and I danced ballet during this time last year and now I can't make it up stairs. Where do you live? I would be willing to fly where ever to see your neurologist. I went to stanford today and the doctor does not think that I have damage from the drug even though I showed him before pictures of myself and there is a DRAMATIC difference!! I lost muscle in my face and neck and doctors have told me to work out! Again, I am just done with docs and getting the " the drugs did not cause this" makes me cry every single day. I was given paxil for the WRONG reasons. I was a very happy girl before all of this.
Originally Posted by ednastvm
You're not alone
I don't know if you'll see this or not -- but I am hoping you do get the help you need! Very few people believed I went through anything significant at all. I am blessed with a husband who is well-educated in pharmaceuticals, and a doctor who is humble enough to re-examine his previous diagnosis at our request. He agreed that it was indeed SS -- and at a recent visit, mentioned that he'd even seen it in another patient since my case. I am pretty sure my case helped him come to that conclusion!
Originally Posted by gabyla
I still have occasional body jerks (it's been 2+ years since I was diagnosed) -- but they are not problematic enough to complain about.
Please keep searching for help. I would look for neurologists and pharmacy experts who could back up what you are saying (that was what it took for me). The best of luck to you.
I know you posted this a few years ago, so I am hoping that I can still get a reply from you. I too am looking for information related to Serotonin Syndrome. I also had a terrible situation in dealing with these horrible drugs. My story is long and complicated, but I would love to chat with you, if you are still looking for other people who have had experiences with this. I also have questions that I am looking for answers to from anyone who has dealt with any kind of reaction to any SSRI medications. I hope that your ordeal is over and that you have been able to recover. I would love to speak with anyone who has ever had Serotonin Syndrome or any kind of allergic reaction to SSRI's. I know there is information to be found, but I have never actually talked to anyone else that has gone through it, it is a very lonely feeling, as I am sure you know all to well. I hope you are feeling better these days!
Oh my gosh! I have been reading your last post and my heart just breaks for you. I have so many of the same symptoms and have been through the Dr. run around and the not believeing that this could have caused it. I think many doctors are very much into covering up for eachother, which is very sad.I too took photos of what I looked like before for doctors to see. I actually have a couple that believe me. I was a yoga instructor with extremely defined muscles and not on a single medication. I was diagnosed for the wrong thing too and should never have been put on SSRI's Mine started on September 14, 2007 and I am still dealing with the nasty neurological side effects. If I can offfer any insight or help at all, please let me know. I am so sorry for what you have been through. If it is anything like what I have gone through, I can relate, and it sucks. I decided a long time ago that I will never say that I know what anyone has been through, because I don't know what you have gone through, but I think I can relate, and if it is even remotely the same, it has been as close to hell on earth as possible. It would take forever to wite my entire story down, but I would be more than willing to share it with you. I am also very curious to hear about your story. I am a 33 year old mother of 3, living in Utah. I would be more than happy to give you my personal info to get a hold of me if you want to talk. Best of luck, I hope you are doing well!
I, too, am a nurse. I thought there was an antagonist to reverse serotonin syndrome? I know that it gets mistaken for neuroleptic malignant syndrome. Absolutely shame on your CN for not wheeling you down to the ER herself (or himself). I'm sorry you went through that. Sounds like it just built up in your system over time. All of this med stuff is super scary. No one, not even docs, know for certain everything that can happen when they prescribe meds. Hope you're feeling better.
I am suffering as we speak
6 weeks ago I was put on prozac, 40 mg. at about a month I was visiting my daughter at college, staying at a hotel. at around midnight, i felt my skin burning, couldnt breathe. could hear my heart beating in my ears, my blood pressure shot up. vomiting, siarhea, head spins etc. I knew I was going to die and had no idea why. My daughter called 911. because it is a college town they thought I had been taking drugs and treated me horribly. they did blood and urin and saw that this was not the case. They told me I had vertigo and sent me home. I went back to my home several hours away and thought it was just a fluke. days later it happened again. I called 911 after the attack had lasted 10 hours. Medics arrived and told me I was just trying to get drugs and left me on the couch. I seriously thought I was going to die.
these attacks have now been happening atleast twice a week for 6 weeks. My dr says she has no idea and says i need to see another dr. She also thoust SS, but said that the prozac should have been out of my system by now. Is this true? I was on for 5 weeks and have been off for 4 weeks.
These symptoms also mimic pheochromocytoma, tumors onthe adrenal glands, but since I have no insurance I can not get the MRI needed to see. I have had tumors on my thyroid and have had it removed, it was cancersous.
I feel at a loss to get help. And my fear is that I will die on my floor infront of my kids as no one will help me and think me some kind of drug addict.
I will say this. First I am so sorry about the hell u went through. Second, I think antidepressants are so overprescribed by doctors these days. If u complain about anything from depression to OCD to panic attacks, it is always an antidepressant that seems to be the "miracle drug" that will get your life back in order. Many have bad side effects and Serotonin Syndrome is a consequence unfortunately, a rare one, but it does happen from taking these kinds of drugs. Doctors worry about benzo. addiction, narcotic addiction, and I am not playing this type of stuff down, but stop handing out antidepressants like Halloween goodies. I have actually heard stories about some kids abusing antidepressants, like Prozac, to try to get a serotonin high. Ridiculous!!! That what it has come down to these days??? Wow, unreal!! I take Xanax for Panic Attacks, and they work fine. Never have abused them, but some ppl do, but for ppl with panic disorder they don't give u a high, they just make u feel normal and take the panic away. Of course I only take these as needed, and they are def. needed sometimes dealing with the problems I deal with in this world, LOL! I hear so many horror stories about narcotic abuse and other types of drugs, but the antidepressants are overlooked and overprescribed. I hope things are going better 4 you now. Doctors really need to take a hard core look at these drugs and their use based on a case by case basis per patient, condition, medical history, etc..
Last edited by primetimegrape; 09-07-2011 at 03:33 PM.
Primetime, I couldn't agree more. Doctors throw those things around like candy. So many patients need some time with a therapist, but the insurance companies don't want to pay for that, and the pharma companies sure as heck want people to go the drug route. I feel strongly that primary care physicians shouldn't even be allowed to prescribe these meds. They're very complicated, and I think only a qualified psychopharmacologist--who stays up on the literature and has significant clinical experience--should be allow to prescribe them.
Karrie, is there any way you can get in to see a psychiatrist? I know you don't have insurance (another BIG problem with our current system). I think that would be your best bet, if you're able to. Is there a university hospital near you? Maybe a clinic you could go to?
You don't necessarily have to have an MRI to diagnose pheochromocytoma. There are several other methods to consider:
Originally Posted by mustangkarrie
- Clonidine suppression test
- Blood analysis of free metanephrine
- 24-hour urine analysis to gauge catecholamine metabolite concentrations
Something else though, and I swear I don't mean to insult your intelligence, but how often are you getting your T3/T4 level checked? A lot of your symptoms are related to severe thyroid hormone imbalance and although you may be taking the same amount of hormone per day, there are many other factors that can disrupt the balance. It also doesn't take much of a difference in serum levels to see a DRASTIC problem develop, especially if your thyroid has been removed.
As far as Serotonin Syndrome, I really don't know. However if you even suspect that you might have either of these highly life-threatening conditions, damn the insurance, get to a hospital! The longer you wait for treatment, the more damage is being done to your mind and body, which in the case of the mind is especially difficult to repair!
Even if it turns out that you do have pheochromocytoma and have the tumors removed, the damage caused by extreme levels of extraneuronal catecholamines and hyperadrenergia will have undoubtedly caused brain damage at this point. The good news, however, is that there is an alzheimer's drug called memantine that is currently being researched for off label utilization and it has shown a significant impact on stimulating neuroreceptor recovery and enhancing neural plasticity, thereby allowing the brain to better compensate for whatever structural problems that may have developed during the course of the disease. It is not currently indicated or promoted for use under these circumstances, but it can't hurt to ask a good neurologist if this treatment could be beneficial. You could also go the natural way and take magnesium glycinate supplements which do almost the same thing (antagonize NMDA-receptors and detoxify high levels of excess glutamate).
I hope this information helps you and anyone else that might have the same symptoms. And to all of the other posters that are dealing with problems related to serotonin-toxicity and SSRI complications, don't give up or lose hope. It sucks for sure, but the 5-HTP neural pathway can recover its proper structure and functionality, it just takes a while.
Hi, I was taking doxepin (a tricyclic med) and a small amount of lithium (300mg) along with xanax (0.5mg x2) and I was still feeling rough from depression. I had taken sam-e a year ago with reasonable results so I started taking the sam-e 400mg daily for three days. After the third day I noticed cramping of my fingers and on the fourth day out of the blue my pulse raced, I had trouble breathing, difficulty moving my eyes, muscle stiffness and it was very difficult to swallow. I was taken to ER and they just sat me at the back of the waiting room with no help at all or questions about my symptoms. I finally got the energy to get up and when the dr. saw me he said it was just a panic attack and sent me home. Since then it's been two weeks and my brain and body don't feel the same, my anxiety is worse than ever and I am really scared. Is this serotonin syndrome and will it get better and what can I do to help it improve? Thank you so much to anyone that replies.
First off, stop taking the SAM-e! SAM-e is involved in the biosynthesis of serotonin and should never be combined with any other serotonergic, let alone two. You've effectively started the fire with the doxepin, stoked it with the lithium, and then poured gasoline on it with the SAM-e!
Originally Posted by malmal1
The symptoms that you described would look like a panic attack to an ER doc because that is all that they are trained to suspect. However, stiffness is not a symptom involved in panic attacks, but it is a key symptom of serotonin toxicity. You need to get to a hospital as soon as possible and do not leave until you are attended to by someone who knows what to look for. Here's a test to make sure: if the doctor just will not accept that it is anything but a panic attack, then ask him or her to explain exactly how it isn't. If they try to evade the question by telling you that it is too hard to understand or some other such cop-out, then ask them what the treatment would be if it were and you will not leave until either they answer to your satisfaction or find someone who does. The proper course of treatment for serotonin toxicity is cyproheptadine and 24-hour observation. I say that you have to demand all of this because the vast majority of ER doctors treat their patients like numbers in an endless succession and they get very obstinate when someone keeps them from spinning their revolving door. You MUST get the proper treatment immediately because serotonin syndrome turns fatal very quickly and easily. I wish you the best of luck and health and I hope you let us all know how you're doing.
Serotonin syndrome update
Thanks for your reply!, I have stopped the Sam-E, doxepin and lithium the day this syndrome started. Actually took Sam-E one more day since I didn't realize it might be part of the problem, on that last day my brain felt like it was fizzing(scary).I have been to my pdoc and he hasn't recommended anything except continuing stopping of drugs. Should I still get treatment for this after 3 weeks? I am not sleeping/eating well and I am at a loss to what to do...I wish the hospital would have taken it seriously and given me ciproheptadine at the time. Is it too late for this and what course of action should I take now. Thank you so much, I really appreciate it.
I'm so glad to hear that you're okay. I know it must have been an awful experience, but as long as you are careful of what meds you are taking together you should recover and be as good as new in no time. As far as treatment in the interim, I'm really not sure. You sound like you are experiencing some anxiety as well, which is understandable considering what you have gone through. One important thing to remember about anxiety is that you can actually trigger a panic attack by being scared of having one! Try not to rely on meds for anxiety though, because it is way too easy to develop a dependence. Trust me, as bad as antidepressant withdrawal is, it pales in comparison to benzodiazepine withdrawal. However, if the anxiety, restlessness, sleeping problems, etc. persist and anxiolytics are necessary, go for the ones with the longest half-life because they are no where near as addictive, they last longer, and, because they are not as potent in the acute phase, they are easier to function with and not as sedating. Klonopin and the like have been demonized by many, but when used properly, Klonopin is very effective at treating the type of anxiety that nags you in the background and keeps you from being able to relax.
To answer your question about the cyproheptadine treatment being useful at this point, unfortunately, no, in fact it would probably make your depression go into overdrive. Cyproheptadine is an antihistaminic/anticholinergic/antiserotonergic drug that is only useful in treating the acute phase of serotonic syndrome because of its dual action as a 5HT-2a receptor antagonist and its ability to temporarily block calcium channel conduction in the nerves and muscle fibers. Basically, it is useful because it covers all the bases that are affected be hyperserotonergia, not just in the brain but the muscles and GI-tract as well.
I wish you well and hope to hear you make a full recovery soon. Just remember that it will get better, it just might take a little while. Stay strong in the mean time and try to find a good therapist or support group to help you recover from your depression. Any good psychiatrist will tell you that using only medication to treat depression is almost certain to eventually fail. Depression is not just a disorder of neurochemistry, it is also very often a disorder of thought pattern as well. Make sure that you cover all your bases so you never have to go through such an ordeal again.
Last edited by ddcmod; 10-18-2011 at 09:36 PM.
Hi there. First off, congratulations on eight years of sobriety!
My ex-pain management doctor put me on Cymbalta for pain (it tricks overfiring neurons), and Trazodone for sleep. hen I told my doctor how ill I was feeling, she wrote me off as faking it, or being overdramatic. My sister finally decided that enough was enough, and googled the interaction of those two drugs. Apparently they should never, ever, ever, ever to the infinite power be mixed together because they can cause, guess what? Serotonin Syndrome. Reading that page, I realized that I had every symptom. I stopped taking the Trazodone that night, and ended up hospitalized a couple days later because I'd been vomiting every time food or water went near my mouth for the past three months. They pumped me full of fluids for two days, gave me some Zofran, and sent me home. The vomiting continued, and after eight months, I looked like a skeleton. I had long since dumped my horrible excuse for a PM, and was searching for a new one. I managed to find one, and when she heard about my stomach problem, she told my mom to drive me four hours, to her hospital, and that they'd admit me immediately. I ended up having Superior Mesenteric Artery Syndrome (my duodenum was collapsed onto my Superior Mesenteric Artery, and was proventing food from going through. It's 33.33% fatal, and extremely painful.), which was secondary to Gastroparesis allegedly caused by the Serotonin Syndrome. I ended up with a Picc line, TPN, Dilaudid, a feeding tube, and a ton of other stuff I can't even remember. After awhile, the medication they put me on for the Gastroparesis stopped working, and they put a gastric pacemaker in. As of right now, one of the leads is eroding into my stomach, and causing me to vomit blood, and lots of other super fun things. I'm getting the lead taken out on the seventh, so cross your fingers/pray/hum along/whatever for me, please.
That's my super fun story. It hasn't quite ended, so I'll have to keep you updated on it.
Thanks for the support. I saw a neurologist that said it might have caused damage to my brainstem but he said it could take up to a year to recover. Does this sound possible to recover from? My headaches have subsided but brain fog along with only getting 2-3 hours of sleep a night haven't helped. When I wake up after short sleep I go into panic mode supreme and have an almost impossible time getting back to sleep. My doctor recommended Lunesta but I don't know how that could restore sleep cycle. There must be something else I could take. I have been feeling so bad lately I have often felt like doing nothing but sitting on couch and dealing with anxiety. I have been taking 5mg of valium 3x a day but don't want to become addicted to this stuff that's for sure. Any opinions on this would be greatly appreciated.
Originally Posted by dmolise21
A lot of what you are experiencing is related to the physical changes in your serotonin receptors as well as the long-term effects of antidepressant discontinuation syndrome. After being exposed to such a high level of excess serotonin your 5-htp receptors are forced to downregulate in order to prevent further stimulation. Crudely put, it is sort of like the way a turtle withdraws into its shell in response to danger. The problem is that downregulation can last for quite a while before your neurons are able to reinitialize their proper sensitivity to serotonin. Unfortunately, there is very little that can be done to accelerate this process. Taking antidepressants or serotonin precursors could potentially make it even worse, and taking 5ht-receptor antagonists (which can paradoxically relieve depression) is a risky business as well.
Originally Posted by malmal1
This is where natural, non-pharmacological therapies are the best, and really, the only safe method of treatment. It may sound trite, but regular exercise and proper diet are very important in facilitating the recovery process, along with a healthy dose of socialization and engaging in productive activities, no matter how small and seemingly insignificant. Every little thing that you do to try to fight this must be seen as positive and effective, even if it doesn't logically seem to be. In my experience (I've been on a countless number of different types of antidepressants for nearly a decade) there is only so much that any medicine can do, and when even that fails, it takes sheer force of will to endure the pain and push through to the light at the end of the tunnel. I know it is far easier said than done, but you just can not give in to it. Staying busy and feeling like you are being productive will help to give you a sense of momentum in regard to your recovery and will also help to slog through the anxiety. The worst thing that you can do is lie around and wait for something to change, because it simply won't. Stagnation and boredom will cause all of your symptoms to become unbearable because you will never get away from them mentally.
As for the neurasthenia, ask your doctor about pregabalin (lyrica). This drug helps with neuropathic pain commonly associated with fibromyalgia, but it is also indicated for use in treating general anxiety disorder. This could kill two birds with one stone. Pregabalin could theoretically ease the headaches, fog, brain zaps, anxiety, and general bodily discomfort that are experienced during pronounced cases of antidepressant discontinuation syndrome. I don't know if it has been used for this, but I don't see why it wouldn't. The important thing here is that it is not an antidepressant or a benzodiazepine, so it shouldn't cause any problems. I stress that last part because I really don't know for sure.
Now, for the insomnia, that is going to be really tricky because you really do not want to take a sleep aid with benzos in your system; you could easily stop breathing. Another thing to remember is that both valium and lunesta, in fact, nearly all benzos and z-drugs [zolpidem (ambien), zopiclone, eszopiclone (lunesta), zaleplon (sonata)] have been shown to cause depression in those that are vulnerable to it. I would suggest going with an antihistamine-based sedative like hydroxyzine, which is an anxiolytic/hypnotic that has been shown to be superior to lorazepam without the risk of dependence and abuse.
It also helps with sleep onset, latency, and duration.
Ask your doctor about these treatments and let me know if they work out for you. I've personally used hydroxyzine and I can tell you that it really is surprisingly effective compared to benzos.
Hanging in there!!! Barely.
Hi, and thanks for your great advice. I went to an herbalist, naturopath and even went on a vacation before going back to work but this nms/ss syndrome has beaten me. It has now been 3.5 months since this dreaded reaction and I am getting worse daily. I have now noticed the following problems: ulnar nerve has been damaged in my arm resulting in my hand being numb/painful, kidneys have been showing signs of damage(this scares me), eyes have been showing symptoms of glaucoma and they are really painful and blurry, feet have been feeling weird from the nerves being out of whack, my GI tract has slowed down severely and constipation has been extreme along with dry mouth-seems like everything has dried up yet I drink quite a bit of water, my memory and mood has been awful and sleep is still only 2 hours a night for the whole time and sleeping pills maybe add an hour to this but I pay the price the next day. I have been taking omega 3's, a multivitamin, dandelion for kidneys, acidophilus and a real small amount of valium so I can relax a little. If there is anything that can be added to help my condition I would be so grateful to hear some positive things or treatments that can pull me from this condition that is consuming my life. I also had my mercury fillings removed by a dentist that was fairly careful when removing them, there are no local dentists that do this properly and I was going to go out of town to get it done but I couldn't make up my mind and decided to go locally. I don't think my health was at the level that could tolerate this threat to the immune system. Now I feel stupid that I did this hoping that it would improve my health but now I feel even worse. I pray everyday for help in this recovery and thanks for reading this!
Originally Posted by dmolise21
Last edited by ddcmod; 01-11-2012 at 12:35 AM.
This is starting to sound more like neuroleptic malignant syndrome than serotonin syndrome. The two are very similar but only NMS presents with these symptoms:
- Bradykinesia (basically you move less and slower than normal)
- Muscle rigidity (not just tremors or spasms)
- Elevated white blood cell and creatinine phosphokinase (CPK)
That last one is the key to the proper diagnosis. Elevated CPK causes kidney damage over time, and in recovering from NMS you would also experience memory impairment and general cognitive deficits. Get to a doctor to have your blood checked and tell them explicitly to check your CPK levels because they don't normally check for that in a routine blood test.
You may be wondering how you wound up with NMS even though you haven't been taking any anti-psychotics; there have been cases of NMS caused by taking combinations of lithium with tricyclics or MAOI's as well as other combos, and some have even experienced NMS from simply withdrawing from a drug that increases dopamine levels. To counter some of the effects of NMS, dopaminergics like cabergoline or bromocriptine are helpful, and later you may actually do well on abilify to treat most of your depression symptoms. NMS is caused by blockade of D2 receptors, however abilify enhances the activity of dopamine in D2 receptor sites. It also works wonders for depression. If you can afford it, abilify might be the way to go.
A lack of D2 activity could also explain the numbness/pain in your extremities. Both Parkinson's and Restless Leg Syndrome are also caused by problems with dopamine transmission because dopamine, as well as serotonin, is important in the regulation of proper muscle functioning. If you don't have enough dopamine, your muscles become rigid and atrophy, causing numbness, pain, and rhabdomyolysis (destruction of muscle tissue). This cascading effect is what leads to the kidney problems. When muscles die and break down, the excess proteins are absorbed and processed through the kidneys. When too much builds up, the kidneys fail and dialysis is required. Check your urine to see if it is a dark brown color and has a pungent odor. This is an indicator of kidney damage and must be dealt with immediately to prevent a whole host of further complications that could ultimately lead to death if ignored. Until you can get to the doctor, try to limit anything that may put a strain on your kidneys, including your multivitamins. Normally they would help, but in this case they may be doing more harm than good.
I know you are really freaked out about all of this, but the sooner you get this checked out, the better your chances of recovery. I wish you the best and I hope that I have been helpful. Let me know how you're doing and don't hesitate to email me if you need any more advice or just want to talk.
I am worried that this is nms also. My memory is poor and sleep is only 2 hours a night for 4 months now. I am so concerned about this condition and my fiance just thinks it's just anxiety and should get over it...I wish it was this easy. How do I email you to talk about this since it would help tremendously, thanks for being an awesome person. Can the brain heal from this? My doctor thinks I can sue him for bad advice. He laughs at my condition...i'm not joking. He thinks it wasn't nms but my ck levels are proof. My urine was very dark a couple of times but now it is really foamy and I have actually had to beg for my dr to get me tested, this has been a nightmare that has me contemplating ceasing to exist on a daily basis. If you have any of your valuable time I would really appreciate it....this has really altered my life and I never was given informed consent about the meds given to me and the lithium wasn't even discussed until I picked up my prescription to see it had been added. This has taken years off my life and I was super healthy and fit before this non sense. Thanks again.
I swear, doctors never cease to infuriate me. I don't know for sure if you can sue him simply for bad advice, but I do think you should at least talk to a malpractice attorney if this is the same doctor that put you on both lithium and doxepin. For one thing, the only circumstance that would warrant any doctor putting a patient on 300mg of lithium per day is for migraine/cluster headache prophylaxis, however, this is still very rarely utilized, especially in the presence of another serotonergic drug. In the case of other antimigraine meds like the triptans, it is very dangerous to combine those with any type of serotonergic antidepressant because of the high possibility of serotonin syndrome. That doesn't mean that it can't be prescribed, but the doctor had better have a damn good reason to put a patient in that kind of unnecessary danger. If your doctor works at a hospital, contact someone in patient relations or hospital administration and ask them about all of this.
The thing that blows my mind is that the doctor (I'm assuming that this is a psychiatrist) put you on lithium and yet doesn't want to take blood tests! Lithium is one of those drugs that you absolutely must take periodic blood samples in order to regulate proper plasma concentrations. Plus, if you have been showing signs of kidney dysfunction, blood tests are all the more important! Regardless of whether you try to sue or not, get a new doctor! I have to drive over an hour to see mine, but at least it is someone that I can trust, so I know that it is worth it.
As for contacting me by email, check my profile page and you should be able to download a v-card with the info. Also, add me to your contacts and that might help. If it doesn't work, I'll think of something else.
Originally Posted by dmolise21
I can't seem to be able to contact you via contact section. Is there any other way to email you? This would be a blessing! Things are getting pretty tough and I have been showing symptoms of nerve damage in arms and legs. I regret taking meds so much but mainly the combination my doctor put me on and the advice he gave contributed to this situation. I used to work out, play guitar, meditate and a whole bunch of other things but now this reaction has consumed me with the physical affects it has caused. This has been the worst thing I have ever experienced but I keep fighting...and now my fiance rarely talks to me anymore and she was the person that insisted I keep taking the meds even though I told her they were making me ill. I should`ve stopped them then but we were on vacation and having an argument in the hotel room wasn`t an option. She is very controlling and I wished I would`ve just told her no, I will not take these meds anymore but that would`ve made for a very long vacation with her ignoring me. Now, I will have to live with these symptoms possibly forever...this kinda sucks!!!! Anymore replies would definitely help.
This is the second message I've tried to post in order to get in contact with you. My first one was deleted by the moderator because I inserted a link to a temporary email account in the post. Unfortunately it seems that all private messaging has been disabled on this site, so lets try this and hope they don't delete this post too.
Last edited by ddcmod; 04-08-2012 at 03:49 PM.