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- 1 Post By Endure
PLEASE HELP, I can't tolerate Drugs! What is wrong with me ?
PLEASE HELP, I can't tolerate Drugs! What is wrong with me ?
My body is so totally and utterly screwed beyond anyones understanding, I desperately want to be normal like everyone else and be able to take drugs so I can at least manage my chronic pain without ending up in the Emergency Room from taking a tiny amount of opiates...
I hate my body for being so messed up and Im angry with doctors and the medical world for not being able to help me, WHY CANT ANYONE HELP ME ? I'm at the point where I'm going to end up killing myself out of anger and frustration by continuing to take the opiates that make me sick...
Everyday I experience severe adverse reactions and everyday right after an adverse reaction I hate myself even more and hoping that next time it would just kill me then at least maybe someone will take me seriously enough to figure out wtf was wrong with me in my autopsy. Todays adverse reaction lead me to seek out these forums and although I know its unlikely that anyone here can tell me exactly what is going on with my body I am still seeking help out of desperation. I have tried desensitisation methods by taking small doses of the medication everyday but soon as I get to a dose that allows pain relief the adverse effects dominate over everything else.
The actual adverse reactions symptoms are just so unbeliavably horrible, stupid and twisted and it makes absoloutely no sense!! 5 mg dose of Oxycodone always increases my blood pressure (hypertension) from my usual 125/60 to a whoping dangerous level of around 190/98 and the most retarded thing about this is that whilst it increases my BP it always drops my heart rate way down to around 45 bpm (Bradycardia) , WHY ?!!? .....
Furthermore when I lay down in an attempt to try and reduce my blood pressure by relaxing and doing breathing excercises than my already very low heart rate drops even lower to dangerous levels around 35- 40 bpm, so whilst I can reduce my blood pressure slightly my heart rate becomes even a bigger problem when I try and relax. So Im damned if I do and im damnned if I dont.
I would not care about the BP and the heart rate if the drastic chage in my vitals didnt make me feel so horrible. I can literally feel the built up pressure in my skull from the increased blood pressure which makes my head feel like its about to burst also cauing severe headaches and neck pain.
Then there is the hyperthermia and the fevers I end up with, the very first reaction I get during an adverse effect is the fever response where suddenly as the drugs effect comes on it feels like a heat wave and I find myself throwing off clothing and running for the air cooling system or for a cold shower. Then the muscle spasms kick in and I start twitching and spasming all over whilst my jaw muscles clench and contract uncontrollably.
The whole thing gets even more ridicilious because I have adverse reactions towards all psychoactive substances that act on my autonomic system, my doctors have trialled every opiate pain medication they could think of including Morphine, Fentanyl patches, Hydromorphone, Tramadol, Oxycodone, Codene, Buprenorphine and yet every single one of those has caused me some sort of horrible reaction varying on the type of drug. With Morphene and Fentanyl the adverse effects are different as they supress my vitals causing respiratory depression, difficulty swallowing, low blood pressure and heart rate and a feeling like my body is just shutting down due to slowed vitals along with the usual flushed and fever response.
I cant even drink the ocassional alcohol in social events without feeling the described adverse effects. I need some sort of pain management and even if I didnt take any opiates it dosent solve the problem because I have to wear a god dam medical bracelet all the time warning paramedics not to administer any sedatives, anelgesics, stimulants or opiates in the case of an emergency, furthermore I cant even have surgical procedures that I need due to the risks of sedation with anesthesia. I cant continue to live my life like this, its bull******** ! Is there anyone in the world that can help me with this ?
I'm still digesting this, I have a few questions.
Do your doctors have a name for this condition besides "severe allergic..."?
What about marijuana and other OTC analgesics? Do you get the same response? What other drugs cause this as well. How long have you had this, what type of CP do you have?
Age and gender too. Have you had a chromosomal profile done? Any relatives with this problem? Does Narcan reverse your allergic response?
Excellent questions, sorry for leaving out those informations as my enquiry ended up longer than I wanted it but my situation is very complex and its hard to describe it all briefly.
I am a 30 year old male and the Ive been disabled with a Neurological illness for the past 9 years known as Autonomic Dysfunction. It developed after I overdosed on a coctail of ecstacy and amphetamines that I had previously been using at rave partys without any prior incidence. I was treated for the hyperthermia and the overdose in hospital but it was too late as I suffred neurological damage and that same day I developed the Autonomic Dysfunction and this chemical sensitivity that has now stayed with me now for the past 9 years.
My situation is very rare and unusal, others with Autonomic Dysfunction often develop it due to other causes and even though they experience chemical sensitivtys due to their unstable Autonomic system it is NEVER to the extent as mine, thats why doctors can't help me. I think the drug overdose and hyperthermia really messed up areas in my brain. The drugs that cause a reaction for me have been all the opiates I mentioned so far, alcohol, sedatives like diazapem, valium, tamezepam and sleeping meds, recreational drugs like even a tiny amount of methamphetamine caused hyperthermia where I findmyself under a cold shower the entire duration of the drugs effect, marijuana has caused abnormal cardiovascular effects and feversm despite having smoked for many years I had to quit immideately after developing the Autonomic Dysfunction 9 years ago.
Ive seen an allergy specialist who I suggested Naloxone or Naltrexone to counteract the adverse reaction however he did not think my body could toleratethe adverse effects of those counteractive drugs. Ive seen about a dozen specialists and they all agree my situation is unusual and none of them can help me but Im just so angry with it all because I know there is probably a scientist out there that can fix me but I dont know how to find the right help.
Thanks for the follow up answers, Idk enough about Autonomic Dysfunction to offer an opinion, maybe over time this condition you have with drug toleration will ease up.
Have you considered ECT?
My only other suggestion is going to like the neurological dept at Stanford, or another School of Medicine hospital that has THE most highly trained attending physicians. Also take it upon yourself to read and learn everything you can about your condition as well as talking to other patients with the same issues.
I hope this helps, nice talking to you.
I think you answered your own question in your second response. You have autonomic dysfunction, as a result of overstimulation of your nerves due to drug abuse. ALL of your symptoms are classic symptoms of this condition, so I don't understand why you're posting a question to ask what it is. That is the problem. It is not curable, best I've heard, and there are a few drugs that a doctor may try to overcome some of the symptoms. All the blood pressure-heart rate, temperature, drug reaction symptoms are a result of this condition.
It's rather clear that drug abuse caused it - you said so, yourself. And yet you are posting to ask how to continue to use drugs... I don't get it. This is a massive message to you that you have abused drugs in the past. Autonomic dysfunction is not a terribly painful illness, as far as I've read. It's more "uncomfortable" than painful - so why do you need to find a drug for it?
With damage like this, maybe your body is trying to tell you something - like stop the drugs!!!
Its not that simple, I didnt come here seeking attention and asking questions unnecesarily when you think I already know the answer. I really need to take the medication for severe pain and the real problem is that everyone else who has Autonomic Dysfunction does not have the symptoms that I have including the broad spectrum drug sensitivity, I have a whole bunch of unexplained things going on with my body including pain.
So while you made a good point in regards to the abscence of pain in Autonomic Dyfunction I still suffer from chronic pain as a result of deterioration in my joints and muscles along with torn ligaments and cartlige in both knees, both ankles, both shoulders, herniated disk, problems with my neck and other connective areas and according to my MRI I need surgery to repair some of the damage yet I cant go through with it because of the sensitivities to anelgesics and the risk of being sedated with anesthesia, so you see its not easy as saying just quit the drugs, theres a whole bunch of issues that cant be just ignored or solved by stoping the use of drugs.
In the past I agree I abused drugs and payed the ultimate price however my reasons for needing them now are legitimate and for medical use only. Even if I wanted to abuse them which I wouldnt my body would not allow it in its current state.
Yes its true that people who have my condition have problem with heart, temperature and blood pressure but mine is at such an extereme level it doesnt make sense, whilst people with Autonomic Dysfunction only experience heat intolerance in summer I constantly overheat even in winter. I have to wear a cooling vest most of the time, I cant go out into the sun and spend a lot of time confined to my room in front of my air cooling system but other people who have the same illness dont experience that and they dont end up with hyperthermia everytime they have a bad reaction to some medication as I do.
I spent 9 long years putting up with this ******** and its taken away my independence, my job, my friends, my social life and any goals I had so unless I try and figure some of this ******** out no ones going to come knocking on my door with answers. And no its not just "uncomfortable" its a disabling illness, it effects every aspect of my life. There is a massive list of symptoms I experience every single day which is even too long to explain here.
I feel like Im walking a tight rope without a net because if I end up in an emergency situation how am I supposed to deal with the drugs they give me ? You obviously dont have to worry about things like that but with my damaged body its just matter of time before I end up in hospital facing the real risk of how Im going to tolerate the heavy drugs they need to use on me. Im trying to figure things out before it gets to that.
Last edited by Endure; 01-15-2010 at 09:07 AM.
I think you provided a good rebuttal and ARTIST will agree, its refreshing to see someone for a change write an intelligent reply without getting bent out of shape. I think ARTIST only meant to help and tried to state the obvious, but didn't think a couple steps ahead.
So, what's you thoughts on ECT?
I'm not sure on the ECT but mainly because I dont know much about it, but it sounds like a good jolt could either fix things or make them worse perhaps ?
Isn't the ECT used mainly for depression and psychological disorders ? If your aware of its other uses then I would gladly suggest it to my Neurologist given that he thinks it woul dnot have further consequences. You could be onto something. Thanks for all your help.
Have you tried Neurontin (generic name Gabapentin)? I saw a neurologist two years ago, trying to discover what was causing a lot of peripheral nerve pain. After testing, he suggested it was fibromyalgia, or maybe it could be MS, although he did rule out alcoholic neuropathy (I am a recovering alcoholic). This medicine works extremely well for me, I had side effects such as dizziness and drowziness at first, but those no longer exist.
My thoughts and prayers are with you, I hope you get some relief soon...
Yes I have tried both Gabapentin and Pregabalin, I was told to give them time to work but after a month I gave up on them and figured those drugs were more suited for neuropathic pain rather than physical detereoration.
I am glad you have found relief from those medications, I aprecaite your well wishes and the for your help, thanks.
First off, let me apologize for misunderstanding your situation. I thought that you were seeking relief from painkillers for the symptoms of autonomic dysfunction. I didn't realize just how many other issues you were suffering with.
Have you been in touch with any of the organizations that focus on this disorder? This site has links to many of them, which may be the best place for help: http://www.answers.com/topic/autonomic-dysfunction
As for surgery, would you be able to have a spinal or epidural block which would numb your extremities? Just a thought.
By the way, I DO know the fear of needing pain relief in the event of a true emergency. I live with that concern, as well. My tolerance to pain medications is so high (and addiction so powerful) that I truly doubt pain relief would be possible. And yes, I do know chronic pain - I've lived with it for decades. Never-the-less, I choose to get clean many years ago. I utilize alternative forms of treatment to make my symptoms somewhat manageable, so that I don't need to turn to narcotics. It took a lot of effort to find out what works - but I was devoted to finding solutions, and not returning to the addiction problem. My mind-set was (and is) the most powerful weapon I had.
My prayers and best wishes are with you, and again, I'm sorry if you felt my words were insensitive. That was not my intention.
Its fine, I apreciate the apology.
Ive already had discussion about epidural with my Neurologist however he felt that it may have further negative effects on my already unstable blood pressure as he said something about the small puncture effecting spinal fluid and causing intracrenial pressure or drops in my blood pressure.
hey endure you still on here I would love to talk to you?
This sounds almost like cerebral salt wasting syndrome. (which can be induced by chemical damage to the brain) Or something similar, I can't remember...beta-hydroxylase deficiency...something with the dopamine receptors. Do you urinate a lot and sweat very little?
If I was your doctor, I'd try fludrocortisone and indomethacin. That combo should ( I'm not a doctor) turn what ever is going haywire down a few notches.
THAT IS MY BEST GUESS!
Something in your body (maybe your brain, maybe something entirely else) is super-sensitive. That sensitivity has to be decreased. The drugs I think of when trying to reduce drug-abuse induced sensitivity, insofar as the autonomic nervous system are the corticosteroids and NSAIDS.
Last edited by PeterRabbit2; 05-31-2010 at 12:04 PM.
im sorry you are going through this. i am to and it really sucks. my body reacts to everything... like simple stuff, advil, tylenole, naproxin, motrin, etc... and as far as pain killers go, absolutely not.. i had surgery and could not take anything for pain, it was horrrible, i cried at times because the pain was so terrible.. and yes i did try to take percacet for the pain, i halfed a half and i had a reaction off of that little bit that i took... and i was still in pain.. im so tired of being like this... i was diagnosed with dysautonomia, and i dont understand why some people who have this are able to take meds and others are not. its crazy... i think they should do a study on people like us to try and find out what causes dysautonomia. i have never abused drugs or overdosed on anything.. im frustrated because i cant get a doctor to do anything to help me.. they look at me like im crazy when i try to explain to them that i have reactions to all medicine... im depressed over all of this ????.. cant get no help... have you had any luck?
Last edited by krazy2529; 09-08-2011 at 08:49 PM.
I understand you pain
I am a Nurse. And I am in the same boat. all this started at age 21 when i was given ultram and Tylenol with codeine. the first one gave me Vertigo nausea hot flashes and tachycardia. the second one gave me dizzy spell throw up and bradycardia. moving forward the I had to have an emergency c section they administered Demerol only to flat line me. all i heard was We gave a the right amount for her weight. and then i woke up hours later in recovery. with a slow beating heart. they said i crashed and my heart gave out.
Since then i say NO to any pain meds stronger than ibuprofen. Yesterday i ended up in the ER with massive back pain.
I told them i have adverse reaction to all Pain meds stronger thatn Ibuprofen he laughed and said why you nurses never let us treat you. SO he said Dilaudid is not morphine let me please treat your pain so you feel better. well my husband convinced me and i said ok.
The Nurse came with the IV form of Dialudid 2mg. I told her no your are not you are going to go slow with it .. As soon as she put .5mg in i was woozy hot flashes and head shrinking .. at 1mg my pain stopped i told that it you are stopping at 1mg because to will make me crash..
few hours later dr came back and said look let me give you some more all went well so we can send you home. I hesitant but since i did not crash i was like ok. Here is where it started. 2mg sent me to the floor. HR @ 39-40 massive throw ups. and i was out for the count. he almost gave me NARCAN but backed off since that would send me in a massive throw up spell.
YOU ARE NOT ALONE>> we just have very sensitive bodies to strong drugs.. you have to let them try you at lower amounts that the key. even its .5mg go slow.
IF i stayed at the 1mg i would have been fine.
AGAIN GET LOWE DOSAGES EVEN IF IT NOT SUGGESTED FOR ADULTS. YOU TELL THEM YOU ARE NOT THE AVERAGE ADULT AND THEY NEED TO START AT HALF OR EVEN LOWER THE AMOUNT.
Originally Posted by Endure
Hello my name is Mary and I am having this same problem I think myself. The doctor is trying to get my moods stablized with Lithium. Well now I have to drag my husband into this issue by making him wittness me taking my dosage 3 times a day. I hate pills and have a very hard time taking them. It is I think more psychological reaction than physical. I am trying very hard to get over this intolerence, but it is something I have to fix because I need this medicine to be some what normal. Doctors some mean well and really want to help other seem to just want to say here take a pill feel better. Side effects are another deal that can make some people very un cofortable about taking some of these drugs. We just have to figure out what can help us to get over these hang-ups. Mary
This might sound stupid, but have you ever tried accupucture? Or maybe some raki ( Light healing) Just trying to help find something that would help you and not make you so sick. Mary
Hi. I have been looking for help with a similar problem. I also have a very low tolerance to any type of drugs. I cannot even take half of a tylenol without becoming terribly woozy. I avoid all cold remedies and tough it out. For dental work I can't take any pain numbing meds without experiencing increased heart rate, dizziness, etc. The problem now is I am experiencing extreme anxiety with panic attacks. This has led to depression. I am unable to do normal things anymore. I am basically stuck at home. My doctor has given me several drugs to try and even taking a fourth of a normal dose has caused severe side effects. I would like to just take a regular prescription and have it work instead of making me feel worse. All of the negative reactions, of course, have increased my anxiety and it is more difficult to try new meds. Most think this is "all in my head" and I know it's not. Would appreciate replies from others as I feel alone and isolated with these issues. Just going to my doctor causes bad anxiety and panic. I would like to get to the point where I can seek other forms of therapy but have to be able to get there. Thanks!
Originally Posted by JayhawkJourney
Hi, I just wanted to let you know that I'm in the same boat. It all started with an accidental dose of antibiotics 2 years ago. I now suffer from almost daily panic attacks and depression. I would LOVE to be stabilized on some kind of medication, but even small doses cause agitation, itching, flushing, and low bp. Even antihistamines! SSRI's like Paxil and Zoloft used to help me with panic with little to no side effects, now they are unbearable and can only tolerate for a week. I don't know what to do. A lot of doctors seem to think its psychological, but I was never afraid of medications before this happened.
Just wanted to let you know that you are not alone. I've never spoke out about this online or talked to anyone about it for fear of the crazy look.
I know what your going through I'm allergic to just about everything. I suffer severe hypertension and I've tried everything either an adverse reaction or horrible side effects. there is one they found that I'm not allergic to its called clonidine its horrible I feel like I'm in hell it causes me to have unbelievable PA Nick attacks that I have to take ativan to counter react it I wish sometimes I was dead than to live in a hypersensitive body.this medicine is killing me and the doctors can do nothing.your not alone you have a hypersensitive body hang in there.
The real question here is why are you bothering to post anything when you have said nothing, and if anything have done damage to a human being suffering by belittling their circumstance. "you answered your own question"
Stay off of forums as it is clear you are only using them as a means to gain some kind of confidence which is clearly a serious insecurity. In my practice, I ask patients not to post because of responses like yours which hurt more than help.
You May Have an Underlying Genetic Condition
Okay, I know this thread is really old, but . . . I'm wondering if you have Ehlers-Danlos Syndrome.
Originally Posted by Endure
You mentioned that your severe dysautonomia started after an incidence of heavy drug use; did you happen to have any mild(er) symptoms of chronic fatigue, temperature dysregulation, general sensitivity, etc, beforehand? It might not seem like anything was previously wrong by contrast, but it's very important to take note of.
The reason I'm wondering if you have EDS is because of all the joint problems you have --not just in one area from repeat injury, but widespread dislocations. That is a hallmark sign of the condition. Having EDS would also explain why your nervous system so dramatically crashed from one instance of substance use.
I really implore you to do some personal research on EDS!
PS: in Orthostatic Intolerance, BP often drops, which can increase HR. It sounds like your decrease in HR is your body's attempt to lower incidence of hypertension.