"Exquisite sensitivity to medication"

I'm not quite sure where that exact wording comes from; perhaps a quote from Ostler's Web :

The Canadian criteria also include :

I'm not sure how common this is but it does apply to me. Two anecdotes. When I was working I was having major problems with heat intolerance/overheating and my GP thought (reasonably) that the problem may have been due to the sympathetic nervous system and prescribed a beta blocker (propranolol - standard dose. It worked - in spades. I ended up absolutely freezing and completely knocked off my feet to the degree that I couldn't function at all. I stopped taking them as there was no way I'd make it into work.

On another occasion I scrounged a painkiller (Kapake - codeine) from my wife (who has degenerative disc disease and a so has a pharmacopoeia on hand). At time she would be on up to 8 Kapake a day and able to function pretty pain free. After a single tablet I giggled uncontrollably for 30 minutes then fell asleep for 12 hours

Anyway - I often wonder if some of these odd symptoms might hint at where the central problem lies.

I can only think of two explanations for this oversensitivity.

(a) meds cause a disproportionate physiological reaction in PWME perhaps due to some breakdown in 'control mechanisms'/feedback loops;

(b) the physiological response to meds is normal and proportional but the perception of expected minor physiological changes is disproportionate.

I would have thought that (a) would be fairly easy to test?

 

Beta blockers are indicated as causing problems with mitochondrial function, and one of the milder listed lactic acidosis symptoms I had with another drug which impacts mitochondria (metformin) was my entire body getting very cold.

 

Low energy metabolism results in low drug metabolism which results in stronger than expected effects?

 

I only seem hyper sensitive to certain meds. Others, I seem to react as normal.

I am really, really sensitive to SSRIs and amitriptyline. Even in the tiniest dose.

I cannot handle anything with adrenaline or adrenaline based compounds such as epinephrine at all.

Funny you mention beta blockers @Valentijn - my doc put me on this just to try something when I first got sick. It was like someone hit the off switch. I think they thought I was exaggerating when I explained.

 

Also implicated in mucking around with mitochondria

http://www.mitoaction.org/files/Mito Toxins_0.pdf

 

I'm hypersensitive to meds..and frankly to almost everything now. I think hypersensitivity should be regarded as a cardinal symptom in a dx of ME. My sensitivities predate what I consider to be the start of my 'ME proper' in 1970, to being there to some degree from birth. That of course raises the question about some sort of 'predisposition'.

 

I developed sensitivities (skin, food, meds) at puberty which continued and worsened gradually until my OI onset in 2010 at which point they really went for it!
My mother and daughter are the same, but my mother doesn't have OI.

 

I do not think I am hypersensitive but before I fell ill I only needed half a paracetemol where others needed much more.

 

I haven't developed sensitivity to foods (thank goodness....working in the food industry I have to eat all sorts of things...even things I don't like), but I have developed more sensitivity to things I was already a bit sensitive to.

E.g. Wool coat ...before I got ill I couldn't wear wool jumpers but was ok with cashmere scarf or wool blend coats or sitting on a carpet as long as my skin wasn't rubbed up against pure wool.these. After I got ill I started feeling the cold more so bought a Barbour wool jacket in the sale for wearing over my suit at work etc. Put it on once. By the time I got to work, I had developed a three inch doughnut swelling around my neck and wrists where the coat had touched the skin. Same reaction with the very expensive cashmere scarf I wore with no problems before I got ill.

Same with pet hair ....I get a reaction from cat hair on people's clothes at fifty paces!

I'm thinking high levels of histamine that aren't getting dealt with normally?

Eta...sorry this is off topic to medicines...have had beta blockers in the past before I got ill and had a very good reaction to them. Interestingly, after being prescribed these I developed asthma which strangely went away....actually in hind sight, I think is more likely early signs of ME (couldn't get up stairs at work etc) so perhaps the mitochondrial dysfunction has been going on longer than I think ?

 

I think predisposition is at play in my case too. I've had lots of mild allergies since I was a very young child. Food, soaps, shampoos etc.

I didnt really need much by way of medicine so I don't know if I reacted before. I do know that some medicines I did take, I suddenly stopped being able to tolerate. One was my migraine medication .

 

There are certain genes that play a role in substance metabolism (and detoxification); this can be checked.

Also, the expression of certain genes can be checked, which can tell if one is a normal, slow or fast "metabolizer".

In my case it explained why I had problems with certain drugs, and others made no problems at all. And that certain substances (e.g. pain killers, anaesthetics) are faster metabolized.

Before getting ill I never had any problems with any substance - apart from cigarettes. That always was...

 

I seem to be ok with most things. Some medications are not ok - I had horrible side-effects from what my GP called ‘homeopathic doses’ of carbimazole, and adrenaline in dental injections and gels is awful. I’ve just had some fillings replaced and my new dentist actually listened to me and gave me an adrenaline-free experience. Result- no terrible shakes for the next hour, and I could drive myself home!

 

Yeah. Those dental injections with adrenaline *shudders*. The ones without so much better. Especially on top of the effort of actually getting to the dentists and then home again.

 

Same here. I don't recall any 'sensitivities' to meds prior to onset but did have a few true allergic reactions to certain antibiotics. But again I didn't need many meds and prior to onset I hadn't needed to see a doctor in 10 years.

But growing up (again prior to onset) I was sensitive to certain somatic things such as hating wool; over-tight clothing; getting my hair cut (I still rush home to shower and change clothes after a hair cut).

 

I get tachycardia from amitriptyline and nortriptyline, even in tiny doses. Having a heart rate of 150 while lying in bed is no fun at all.

On the other hand, SSRIs mostly did nothing for me at all either good or bad, with the exception of citalopram which made me sleep for 16 - 18 hours out of every 24, which I thought was a complete waste of my life so I stopped taking them.

 

I have to add, the reason I started with meds as opposed to other 'sensitivities' which I've also strayed into, is that other sensitivities may be hard to measure objectively. For some meds (e.g. beta blockers) the expected effect (reduction in heart rate for example) can be measured and while I'm sure the effects of such drugs vary in the normal population, if there is an exaggerated effect in PWME you would expect this to show up.

 

I developed an allergy to wool at some point since getting ME, then lost it again. Not sure if I have it at present.

I reacted dramatically to propranolol early on - maybe if I had had a smaller dose it would have been OK.

I never know until I try something whether I will tolerate it or not, or whether I will have a very low tolerance, a high tolerance, or whether it will vary, until I try. Even then, some things seem to vary like mad, for example things I take to sleep, such as diphenhydramine (taking that tonight).

 

The one thing I can be sure of....if it's supposed to make me sleep I'll be wide awake the whole flippin night.

 

I agree. I'm pretty sure a much lower dose of propranolol may have helped without the undesirable side effects.