Intolerance To All Drugs That Act On The Autonomic System

[Troy]

I know that most of you have some intolerance and sensitivity to drugs but my case is so absurd and extreme that even my Neurologist and Autonomic specialist were skeptical at my claims. I spent years telling them over and over again that I have adverse reactions to every class of drug that has a stimulating or depressing effect on my Autonomic System, such as all sedatives, alcohol, all narcotics and opiates, all analgesics, anesthesia, all stimulants, cannabis, and all SSRI's. My specialists kept telling me it maybe pyschological or anxiety but I know its not. Every time I take any of those substances even in a small dose I was ending up in the ER. At one point I was visiting the ER several times a week when trialling with opiate based pain medications. I trialled every opiate available on the market trying to find one my body could tolerate and in the end they all failed.

After complaining and nagging my Neurologist he finally agreed to monitor me for the adverse effects of the drugs whilst doing a table tilt and autonomic test in his laboratory, on that day I chose the opiate Oxycodone which I took only 5 mg's. He table tilted me and tested all my vitals before the effect of the drug and then once the adverse effects began and he saw the immediate changes in my blood pressure which went up to 178/94 whilst still laying down, and my heart rate at first dropped to 44bpm but upon tilting it went up to around 145 bpm, I began to have the severe tremors and muscle spasms in my legs and jaw as usual due to the adverse effects of the Oxycodone, my temperature went up by a degree and I got the usual severe headaches and neck stiffness. I was calm during the whole incidence and there was absolutely no emotional component, he was finally convinced that it has nothing to do with anxiety and he was quite surprised to see the severity of the adverse reaction. Now that all of it has been documented and I finally I have proof, nothing is still being done about it.

I was asking him to at least publish it in a medical journal so that maybe interest from the scientific community could offer me some help but he doesn't believe it would be effective. I keep telling him my case is unique and that ever since I developed POTS due to a overdose on recreational drugs resulting Autonomic damage I have been stuck with this intolerance to drugs, so there is a lot more to this whole situation and the reasons how I developed this sensitivity from an overdose is the key to uncovering this and understanding the type of damage, but no one is willing to investigate it further even though I believe the technology out there exists to figure this out. I fear I may have to take my unusual quirks to my grave even though my unique situation has a lot to offer to the scientific community.

[lieze]

I don't have any concrete documentation but I seem to be having a similar response.

It seems with any med I try-even simple things like Sudafed and a tiny dose of Xanax I feel like I'm in a life threatening situation. As soon as the med hits my system it feels as if my heart is literally doing flips and even feels like it stops for a moment and then it just takes off and does a run up to 148 or so.

I don't get it and now I've become fearful to take much of anything outside of a tylenol or motrin.

When it hits my system I just do a freak out. Once it's there for a while I'm okay sometimes-the sudafed and claritin I don't feel right til it's out of my system.

I almost feel I need to be sedated just to be able to take normal things so my body doesn't overreact.

[Troy]

Sorry to hear your having similar problems, personaly I find some comfort when I know I'm not alone in these symptoms, so I would like to know is yours also towards every substance that acts on the autonomic system as well including all the class of drugs Ive mentioned above and whats the full list of symtoms you get during an adverse reaction ?

Just knowing others have this too will put my mind at ease especially if they are exactly what I have.

Like with me opiates cause, respiratory depression, bradycardia with hypertension followed by rapid heart rates and irregular heart beats, difficulty swallowing, muscle spasms, hyperthermia and fevers, confusion, agitation, headaches, a presurised feeling in my skull, throbbing veins in my temple, neck stifness and a weird horrible feeling.

[Tachy Phlegming]

I really think you might want to ask for a trial of Mestinon (pyridostigmine). It does act on the autonomic nervous system but it acts as an acetylcholinesterase inhibitor.

This is not the usual explanation I have read but the following article shows that ganglionic acetylcholinesterase production is normally supposed to go down in response to heat stress:

http://www.pnas.org/content/76/11/6012.full.pdf

Writing out what might be at issue in any case or most of our cases would take a bit of doing but with this little amount of knowledge (and knowing that people with dysautonomias use this medication), you might at least be able to understand that this medication could possibly help.

This medication has definite effects on pulse (lowers it) and blood pressure (raises standing blood pressure) but I wouldn't concentrate on that aspect of the medication when thinking about trying it (although you might want to think very seriously about balancing it out at some point with a medication which lowers blood pressure at times when you see that you have high blood pressure).

Some people with autonomic problems end up doing quite well on it. Given my own experience with the med and the fact that I think some of my presentation is pretty close to yours (heat intolerance -- and I would avoid opiates because of the risk I know I have with them), I think you might well be one of those people. Huperzine A is an herbal acetylcholinesterase inhibitor which is commercially available but I think it might be better to get a prescription for the pyridostigmine for a variety of reasons.

(And by the by, despite the explanation above, I don't think you'd feel that the medication reduces your heat intolerance but you might feel that it helps with some of the other problems you have which seem to be related or exacerbated by heat).

[Troy]

Thanks so much for your advice and for that interesting link, sounds like your advice has potential, I will be mentioning the recomended meds to my specialist. Thank you.

[Noreen]

Have you thought about applying to NIH undiagnosed disease program ?

As your doctors have reached the extent of their knowledge, hopefully they will support you in your application. I so hope something works to ease your symptoms.

noreen

[Troy]

Have you thought about applying to NIH undiagnosed disease program ?

As your doctors have reached the extent of their knowledge, hopefully they will support you in your application. I so hope something works to ease your symptoms.

noreen

OMG!! that sounds so promising, in fact its exactly what I was after, ever since my overdose 10 years ago I have been having so many symptoms that just dont fit into anything and all my attempts to find answers only make me realize how uncommon my situation is. The only problem would be that I live in Australia an that link you gave me seems to be based in the US but I will try my luck anyways. Thanks

[ramakentesh]

But you can tolerate a beta blocker?

Sensitivity seems common in POTS - people with NET deficiency are apparently hypersensitive to vasoactive medications but this wouldnt explain your case. perhaps an alternative - an area of the brain stem that is heavily populated by noradrenergic receptors also governs the activity of the blood brain barrier and regional cerebral blood flow.

I knew a person who was highly sensitive who did well on mestonin - it helped that symptom specifically.

Huperzine A is an herbal acetylcholinesterase inhibitor which is commercially available but I think it might be better to get a prescription for the pyridostigmine for a variety of reasons

ive tried it and did not find it overly helpful. But this is correct.

[ramakentesh]

Another radical concept - exercise seems to help those that seem to - at first - have the most negative reaction to it. Perhaps patients need to do the very things that cause difficulties on a progressive chronic basis to slowly improve??

[Troy]

But you can tolerate a beta blocker?

Another radical concept - exercise seems to help those that seem to - at first - have the most negative reaction to it. Perhaps patients need to do the very things that cause difficulties on a progressive chronic basis to slowly improve??

Yea I have no problem with the specific beta blocker "Metoprolol Tartrate". I agree with what you say and over the past 10 years it has become more apparent that all these odd symptoms are a result of imbalance in my brain chemistry such as dopamine, seretonin, adrenaline and problem with the receptors in the brain which seem to be easily effected by further factors such as medications, stress, heat and etc. Its hard to fix such a problem because it is uncertain which particular hormones or brain chemical is causing symptoms due to excessive release and which ones are causing problems due to insufficient relase, for example if your serotonin levels are low and your experiencing depression you take SSRI to build up your serotonin levels but in my case I seem to be experiencing the opposite due to excess serotonin and if I happen to take SSRI's or opiates it just makes everything worse.

So for my situation it is difficult to play around with my brain chemistry trying to stabilize and achieve optimum levels. This is why I also believe regular exercise will stabilize brain chemistry the natural way by releasing hormones like endorphins, adrenaline, dopamine etc and over time it will help stabilize things, this is something I am working on in the long term.

[Noreen]

The only problem would be that I live in Australia an that link you gave me seems to be based in the US but I will try my luck anyways. Thanks

Sorry I hadn't realized the rave scene was present in other countries.

The US NIH has attributed serotonin syndrome to ectasy use

Your situation is so different because it has lasted for so long - well beyond any normal half-life. A medication mentioned that might be worth checcking into is Cyproheptadine (Periactin), a drug that blocks serotonin production.

best of luck,

noreen

[JoeJack101]

Endure, as I was reading your original post, I was wondering if it was a post I had written myself, because I used to be so sensitive to the effects of herbs and drugs, that at one point, even by having a sip or the smallest possible dose would have massive consequences. The effects of every herb or drug that I took were 100 times exaggerated. 1mg of something was equivalent to me having 100mg's (or maybe 1000mg's). After many years of dealing with this, I discovered that I had Dysautonomia. I was diagnosed at the Autonomic Disorders and Mitral Valve Prolapse Center of Alabama, located in Birmingham. Although they were not able to solve my problem with being so sensitive to medications, they believed me and said they had seen the same type of thing with hundreds of other people.

Here's the point: I have a solution for you. Go out and buy some Choline (as Choline Bitartrate) or Phosphatidyl Choline at a local Vitamin Shoppe or supplement store, and take a little bit. Slowly this somehow desensitizes your nervous system receptors and tricks them into not being so sensitive anymore. It worked for me. It will leave you permanently much less sensitive to the effects of drugs, however do not take too much. Somehow, taking too much will take your body too far, leaving you with fatigue and will cause drugs to start having the REVERSE effects on you, kinda weird huh?

Anyway, let me know if you got this message. And what I need to try to find out from you is --What caused you to be so sensitive in the first place?-- What did you take, eat, use, etc that made you so sensitive to drugs? I'm trying to figure this out for me.

[Heiferly]

Have you looked at Dr. Castells' work with desensitization to hypersensitivity to drugs? Maybe contacting her would be a good next step since she is a leading expert/researcher on drug hypersensitivity and desensitization. We mostly discuss her here on DINET with regard to her work with MCAD/mastocytosis, but this is another aspect of her career for which she is renowned.

http://scholar.google.com/scholar?q=dr.+mariana+castells+rapid+desensitization&hl=en&btnG=Search&as_sdt=100000000001&as_sdtp=on

[kiltedharry]

Hello!

I believe i have this Intolerance of the Autonomic System too! The latest evidence of that is the taking of Cymbalta, which my Docter and i decided to give a try. The First Time i took a whole one of the 30mg Cymbalta and After 4 Hour i feeling the next 3 Days so Confused that i can?t take any one more

After one Week of recovering i decided to take just a half one. The first one was with just a little affect, but after the 3.day with the 3. half one i got the same Confused as before!

Now I?m in the recovery phase again, and i asking myself, maby i should try a half one every one ore two week? But get i then any positive Effect, or it?s better to quit the whole Cymbalta Story?

[houswoea]

you could try a different brand of ssri if you really still want to take them. I'm not sure things are going to change if you just keep taking it.

[Troy]

Anyway, let me know if you got this message. And what I need to try to find out from you is --What caused you to be so sensitive in the first place?-- What did you take, eat, use, etc that made you so sensitive to drugs? I'm trying to figure this out for me.

Hi, excuse my delayed response as I only just saw this message as I havent checked back here in a while. What triggered my drug sensitivity reaction is the same factor as what triggered my Dysautonomia. I was taking recreational drugs like ecstacy and amphetamines at rave party's every weekend for several years and one night I mixed a combination of these drugs and ended up overdosing and developing severe life threatening hyperthermia, I was taken to the ER and placed in an ice bath and although this saved my life the neurotoxic effects and the high temperatures damaged my Autonomic Nervous System instantly resulting in Dysautonomia but also developing this unusual drug hypersensitivity which is somewhat ironic that the drug abuse and overdose resulted in drug intolerance.

Thank you for your suggestion in regards to "Choline Bitartrate" , I will give this a try and get back to you how it goes.

Thank you also to everyone who responded, Heiferly I will also check out that link, I apreciate that.

[JoeJack101]

Endure, what did you find out? Did it work?

[comfortzone]

I really think you might want to ask for a trial of Mestinon (pyridostigmine). It does act on the autonomic nervous system but it acts as an acetylcholinesterase inhibitor.

This is not the usual explanation I have read but the following article shows that ganglionic acetylcholinesterase production is normally supposed to go down in response to heat stress:

http://www.pnas.org/content/76/11/6012.full.pdf

Writing out what might be at issue in any case or most of our cases would take a bit of doing but with this little amount of knowledge (and knowing that people with dysautonomias use this medication), you might at least be able to understand that this medication could possibly help.

This medication has definite effects on pulse (lowers it) and blood pressure (raises standing blood pressure) but I wouldn't concentrate on that aspect of the medication when thinking about trying it (although you might want to think very seriously about balancing it out at some point with a medication which lowers blood pressure at times when you see that you have high blood pressure).

Some people with autonomic problems end up doing quite well on it. Given my own experience with the med and the fact that I think some of my presentation is pretty close to yours (heat intolerance -- and I would avoid opiates because of the risk I know I have with them), I think you might well be one of those people. Huperzine A is an herbal acetylcholinesterase inhibitor which is commercially available but I think it might be better to get a prescription for the pyridostigmine for a variety of reasons.

(And by the by, despite the explanation above, I don't think you'd feel that the medication reduces your heat intolerance but you might feel that it helps with some of the other problems you have which seem to be related or exacerbated by heat).

Just an aside ... my neuro doc had no qualms trialing me on Mestinon even though I have issues with high blood pressure and especially higher blood pressures with standing (correlating with up'd catecholamines). True I do get lows and seem extra sensitive to depletion of my hydration in a day - and to standing long periods... but the baseline is high.

So now I'm on bystolic and clonidine -- I'm only a few mos. on bystolic and only on day 2 of clonidine....so far so good - then as soon as the mestinon comes in the mail in a week or two - I'm to give that a try ... The doc said that this med in particular he has no worries with in upping my pressure. I suppose that might be because I'm on the other two meds - but I didn't get the idea that it was one that did this as a rule............certainly I could be wrong... anyway thought I'd comment because of the timing of this thread... thanx

[lissy]

Hey all,

I have sensitivities to everything and don't feel believed or taken seriously with my past doctors. Seems like they just seen it as anxiety attacks ,but I know why I have any anxiety when I take meds because of the feelings it gives me, my side-effects are just like a panic attack but 10X more severe and I shake uncontrollably and my heart races I feel hot, seems like I become so focused on my breathing and my mind gets in a stuck in a extreme state of fear.My whole body changes within 15-45 minutes after taking a medication, when I have had meds from an I.V ohhh boy it was instantly . I have felt so bad and thought I would die so many times from a medication. I have been involved in so many argument's with doctors and have had them explain the possible side-effects with me over and over and actually stay in my ER rooms just so they see what happens , then all they wanna do is give me more meds (xanax, or something to calm my system) I end up just leaving and never feel understood...

I have read the leaflets the more professional parts that come with medication and most meds say if you have CNS involvement(disorders,diseases) it can cause different side-effects .I know our CNS and ANS are different systems but maybe they are affected the same, whatever crosses the blood-brain barrier has potential to affect anything and everything. Our bodies can not even adjust the normal functions properly so what makes the Medical field think we would react the same as a normal properly working body?

The only solution I have gotten in past is to take children's doses or to just pray and hope it doesn't permanently affect me.

Maybe someone that reads this might be able to do more research into the blood-brain barrier aspect and get some more information for us all that have these issues.

Lissy

[dianne.fraser]

Endure

I know you only check in occasionally - I hope you see this message or notice the PM I sent you today. I skim the health-related press clippings every day as part of my policy job, and today I saw a short article on a study being conducted by the Queensland University of Technology on the effects of ecstasy on the brain development of young users. They're recruiting now, if you're interested in following up. The contact is Dr Leanne Hides and her email address is echeckup@qut.edu.au

Even if you can't participate or don't want to, they may be interested in your case.

Good luck and best wishes

Dianne

[targs66]

I realize this is an older post, but I've only just come across it...

I have the same problem (hypersensitivity to drugs), only I'm not sure whether it's only drugs that act on the autonomic system. Doctors NEVER believe me. I am also weirdly sensitive to some vitamins, and usually the ones that are supposed to be helpful!! For example, I can't take vitamin D at all, and most of the B vitamins have a bad effect. I end up feeling sick-ish, weak and dizzy within an hour or so of taking them. I've tried over and over and over - different formulations, injections (B12 and magnesium), with food, without food and so on.

It doesn't seem to be a digestive or allergy issue, because I can drink coffee (I take it with milk, no sugar) and take aspirin without ill effects.

The absolute worst reaction I have is to anything steroid- or thyroid related.

I'm going to see if the choline helps - hopefully it won't also be a problem!

[delphicdragon]

For those with issues with a lot of different drugs- have you looked into the inactive ingredients in these drugs? You might be able to handle the drug itself, but the other ingredients might be what are giving you trouble. I say this because I have issues with aspartame. I didn't realize how often this was added to medications. (I can't swallow pills, so I buy over the counter children's chewable pills if I can.)

See if there is a component of these medications that might be what is causing your reactions.

Sara

[Lovebug]

There is a book on this site that discusses what everyone is going through: http://www.mitralvalveprolapse.com/

My cardiologist told me that I would need to start ALL meds using pediatric or neonatal type doses. Not just a low dose, but a microscopic dose due to the sensitivity of my system. He also told me that things I wouldn't think would bother me actually could...such as vitamins! This book may open your eyes as to what we all share.

[targs66]

Thanks, Sara - I agree that sometimes it may be additives that are problematic (I can't tolerate aspartame either), but some things with additives don't bother me, and other things without do, so I'm not sure what the cause is.

On the plus side, I can take teeny amounts of midodrine (I take about 1/8 of a 5mg tablet three to four times a day) and it does raise and stabilize my BP. (More than that is not good; I just feel jittery, spacey and sick.) Thank goodness - without insurance, there's no way I could afford to take the recommended dose of one 5mg tablet every 4 hours.

Thanks too for the book recommendation. I'm cash-strapped (I barely work at all now), but will try to put aside enough to buy it.

[icesktr189]

I have the same problem, but you have to understand its your body over reacting to the drugs. i do this with EVERYTHING i take. NO joke, even the simplest of meds, i have to have a small does of klonopin. Your body has to get used to the drug. A couple years ago when i first came down with POTS, i took Zoloft. When the drug kicked in, i was on the floor shaking so bad, feeling like i was dying. I took a klonopin and felt a bit better. BUT i stuck it out, and Zoloft ending up helping my POTS so much. Dont give up on the first try, and always have a benzo on hand. Once the therapy of Zoloft kicked in (took about a good month) i was finally able to tolerate pills much better.

Right now i cant even take an allergy medication until i get some more klonopin beacuse my body will over react to it. You most likely have the hyper for of POTS.