Unable to tolerate any medication

[Amyschi]

Hi, another question please.   I have a history of ulcerative colitis, and in the last year have not taken my 5-ASA maintenance medication because it makes my dizziness, tachycardia, and weakness so much worse.   This was a very bad move, as I recently tried to re-instate it and had a very bad reaction.  I generally am unable to tolerate any kind of medication except Tylenol, which I have heard also is typical with dysautonomia, but has anyone had the experience where they cannot tolerate needed medications for other health conditions because of the dysautonomia?.   I took it last night and woke up in an extra bad state, which all of you can understand is difficult to deal with on top of our "baseline" condition.   Just thought I would throw it out there, in case anyone else has UC and has had this intolerance problem, and what they did to be able to continue with their medication.   I have been hesitant to try the treatments for dysautonomia for this same reason, as everything I take makes me extremely dizzy; I would rather almost just deal with it on my own.   Anyone else feel that way?   I know it depends on how badly the condition is affecting you and what you are willing to tolerate.   Thank you.  

[Katybug]

There is pharmacogenetic testing that can be done these days by a company called Genelex/YouScript. You just send them cheek swabs. Some insurance will pay for this testing. There are several enzyme pathways that metabolize different medications. They have identified the genes associated with these pathways and what gene mutations alter the metabolism pathways and how....i.e. rapid metabolizers,  slow metabolizers, etc.. Maybe you can consult with your doctor/s to see if they think they might be able to find better meds for you based on that information?  

http://genelex.com/youscript/

 

Edited August 28, 2016 by Katybug

[Amyschi]

Thank you so much for this information, Katybug.   I will certainly research it more.   Maybe it is the reason some people (especially those with dysautonomia, I've read), have more trouble with medications.  Sure would be nice to be able to take a medicine and have it help, without it seeming to make you feel so much worse.   I also appreciate your welcome email - it is so nice to have a place to go where people understand and can offer helpful hints!  Have a good day -

[targs66]

Hi and welcome to the forum,

I'm also completely intolerant of most medications, including vitamins and supplements.  I'm not at all pill-phobic, but have found that even the most benign meds usually make me feel awful.  Like you, I'm also very dizzy much of the time, but I don't have UC or other digestive issues.  I find it so frustrating!  I'll also look at the link Katybug posted.  Hope you can find some answers!

Targs

[Kaitlyn]

Amyschi- hello and welcome

i wish I had something substantive to add. Just wanted to say I can relate. I am able to take some meds to help with symptoms and am grateful for that although it is a double edged sword as I really don't want to be on any synthetic medications. I take low dose benzodiazepines - without them I would be unable to function. Even with them I have low grade dizziness all the time that gets worse with flares.

hope you get feeling better soon! ?

[Yankee Belle]

Just some food for thought about genetic testing in general.  I started to use the test you mentioned above, but didn't after doing some doing some checking with a med doctor / physicist friend of mine at MIT.  What we found out is that there is a great deal of variability in the matrices that are being used for the testing - one companies report may well vary, even wildly, from another companies report.  In the genetics marketplace, there are not yet any standards for the accuracy of such tests.  For me, I want a high degree of accuracy before I start making significant medical decisions based on the test results.  

I don't advocate for - or against - testing.  I just wanted to share what I learned about accuracy issue so that y'all can consider the accuracy issue when making a decision about paying for genetic testing that many insurance providers don't, as yet, cover.

For me, however, I decided that I would want to know that a test result has a pretty high degree of accuracy, or even that it is generally accurate, before I start basing medical decisions on the results.

Of all of the types of tests you are considering, the only type who's accuracy I was able to determine was for personal reaction to types of pain medication.  Beyond that, the reports back were really iffy.

[Yankee Belle]

Forgot to say .... like all of you, I have the same problems.  My expert allergist diagnosed it as "multiple drug sensitivity syndrome".  Regrettably, there is no real treatment or testing to help with it - only the one we've got now - trial and error.

Now wouldn't somebody make a mint if they really could come up with definitive testing??!!

Maybe this will help you like it has me .... our solution has been to:  (a) start with micro-dose of ANY medication or supplement; (b) adjust immediately on side effects.  That, at least, has significantly minimized the **** I go through every time a new pill or substance is added to my regimens.  I have small, annoying reactions now; instead of nasty, debilitating ones.

And hang in there ... plus share with us who know all too well what you go thru!!!

[DizzyGirls]

My daughter's new headache doctor was going to do this testing on her at her next appointment.  We'll see what it says....  She cannot take ferritin, not because it upsets her stomach, but it makes all of her POTS symptoms so much worse.  It was a very strange reaction, but have to think it was how she metabolized it.  I kind of think she metabolizes certain meds quickly.  Just my observation...

[Amyschi]

Hi all, and thank you for the responses; very helpful.  Good (but I'm sorry) to know that others have this medication intolerance and its not just extra weirdness on my part.   I think it's really strange that we also have the constant dizziness too.   Again, I have read that any kind of dysautonomia causes this medication sensitivity in itself.   I have siblings who can take any kind of medication and get zero side effects - I wish!  Everyone certainly is different, but they just think that I wish the side effects on myself; unless you have this dysautonomia to deal with, you cannot understand.  .   

Targs and Kaitlyn -   I also read your tags and am sorry that you deal with so many of the other dysautonomia conditions.   I admire you just being on here and trying to help others.   Targs, I was just curious on how you did with Midrodrine.  My doctor has put me on this, but I have not started it as yet.   Interesting that you mentioned an antihistamine helping you, as I find that too, that even a very little bit of Benadryl, which is also an antihistamine, helps, but again with the sensitivity, can't take much or else I am knocked out.  Which would be okay if I had vertigo and really had to have it, but otherwise if it is the baseline dizziness, even though it is constant while up, I try to handle it.   And Kaitlyn, interesting that the benzos help you, I'm glad.   I remember years ago the first doctor I saw put me on a low-dose Valium, probably same reasoning - anything that helps the nervous system calm down.  

DizzyGirls, so sorry that your daughter is going through this - that must be so hard.   Interesting about the rate of metabolism possibly affecting her.   And thank you YankeeBelle for sharing that additional information on the testing.   The idea to take less of a medication is great if you can do it - unfortunately with some meds, like the ulcerative colitis drugs, they are a sustained-release that work in the colon, so have to be given in a large dose - they can't be split or anything.   It's funny, but just to show how sensitive we must be, that med is supposed to work mostly topically on the colon and very little is supposedly absorbed by the body, so even stranger why I would react to it that way.   They generally have a very low risk of side effects in the majority of people - so I think we in this world of dysautonomia are definitely a breed of our own!   Sometimes it scares me to think of what would happen if we had to decide to take chemotherapy or something like that - I can't even imagine with the way we feel at baseline.  Would be interesting to know if anyone has had that unfortunate experience.   I certainly hope not, but I'm sure many have had to in addition to their chronic illness.   

Take care all, and thanks.

P.S.  Being new to the world of forums, I need to study up on how it works here - so sorry, I'm sure there is a way to respond to each individual poster, but if there is, haven't figured it out yet.  Any advice appreciated if it's just an easy click. 

[Kaitlyn]

6 hours ago, Amyschi said:

 

Amyschin- you're doing just fine with the forum ?

Im happy you're here - it's awesome to be able to support each other!!

[SarahA33]

Hi, Amyschi, Welcome to DINET   You are doing a great job posting! The way you are responding currently is how we reply in topics. If you would like to contact a member privately, you may use the Private Message feature located in the top left corner. Please feel free to ask us any other questions you may have!  

[targs66]

hi again Amyschi,

I didn't respond too badly to midodrine; at least, not the usual exacerbation of dizziness that I get with, for example, B vitamins.  I agree with what Yankee Belle said above - the "start low and go slow" mantra with meds works best for me!  The only problems I've had with midodrine is that even with very, very small doses I feel better for maybe a few hours, which I'm sure is because of the increase in blood pressure, but then seem to "crash" afterwards with very low BP and heart rate.  Taking more midodrine at that point doesn't help; it's as if my very scant energy reserves are used up quickly, and then nothing is going to work.  I actually just tried Ritalin recently with very similar results - even at very small doses, I feel a bit energized at first, and then really crash.

That's a very different response that I get to things to which I'm intolerant.  Anything that has even a mild vaso-dilating effect makes me feel awful not long after I take it, and that includes things that should be helpful, like B vitamins and Co-Q10.  I think another category of meds that I can't tolerate may be anti-cholinergics, which includes of all things, Tylenol!  Oddly enough, aspirin doesn't seem to bother me at all, but Tylenol and diclofenac make me feel like I've been run over by a truck!  Regular Benedryl (diphenhydramine) causes similar problems, but there's a "Benedryl Allergy Relief" sold in the UK that contains only acrivastine, which has less anti-cholinergic effects (if I understand correctly) than diphenhydramine.  I wonder if that would be better for you in terms of not making you dizzy than taking regular Benedryl?  I believe that all formulations of acrivastine sold in the US contain pseudoephedrine but I've never tried those.

Apologies - I've just run on without providing you any solutions, but hopefully comparing symptoms/reactions is useful!

best,

Targs

[Amyschi]

Kaitlyn and Sarah, Thanks so much for the forum tips.  I don't actually see the "Private Messenger" button in the upper left that you refer to, Sarah, but maybe I am on the wrong page, and will double check after I post.

Targs, thank you so much for this info on the Midodrine, and also how other medications affect you.  It is amazing that I have the same responses with dizziness to anything I take, and it almost makes me want to just handle it on my own and not take a chance with meds.   Glad to know that the Midodrine, however, was not too bad in that regard; of course, I realize everyone is different, and I won't hold you to it!  Ha!   The anti-cholinergic effect makes a lot of sense, and I will look into the Benadryl Allergy, as the Benadryl does seem to help the dizziness when it is extra bad, but boy, if it does contain pseudoephedrine, I would stay away from that I think because of the effects on the tachycardia,   I really have trouble with dental anesthetics, for instance, as I'm sure many of you do, and finally got to the point where I asked for anesthetic without it.   Had to have a tooth extraction and was really concerned about that, on top of just trying to get to the office for the appointment.   Wouldn't it be nice just to be the usual "nervous" about going to the dentist or doctor, and not have to also feel so bad trying to do it?  But I don't want to complain, because it could be worse, right?  (although some days you wonder!).   I don't know about this for sure, and I don't know if all of you experience this too, but I think with this condition our nervous system is just super-sensitive and anything extra that our body has to deal with, just being upright or putting a chemical in our body, such as a drug, will set it off.   I find that sometimes, and this is hard to believe, if I just talk on the phone or get a little excited about something, it will set my heart to racing and I'll feel really weak, even if I am not standing.   Then I think to myself that it must be that I am making myself nervous, or doing it to myself, yet I know this is not the case.      

I see where you said that the Midodrine does seem to help you because it helps raise the low blood pressure, so I am assuming your pressure is low when you stand?  The thing I don't understand about these medications, both fluticortisone and Midodrine is that they are meant to raise blood pressure, thus prevent the dizziness and/or fainting on standing, but what if you don't have low blood pressure, just dizziness?   Will they still help?  I think I will start a topic on how many people with orthostatic intolerance but without a drop in pressure take them and, if so, whether it helps.   I would be interested in your response on that too Targs.  Thanks!

 

[SarahA33]

Hi, Amyschi - PM is an envelope in the corner, or you can hover your mouse over the username you'd like to respond to, and select message at the bottom.

re: dental work, here is a thread that may be of interest: http://forums.dinet.org/index.php?/topic/27054-dental-procedures/

 

[yogini]

If you have problems with tachycardia, have you looked into beta blockers?

Each medication is different. The problem with POTS is that it is a lot of trial and error to find the right treatment. It is a pain while you are going through it, but trust me it is worth it when you find the right treatment, Sometimes, a single medication doesn't work but works when combined with something else.  If you have digestive problems that might also affect your ability to metabolize medications. 

Some people with POTS do have trouble tolerating meds. Sometimes there is another condition causing this sensitivity. I would encourage you to work with your doctor to figure out your particular situation.

[Amyschi]

Thank you, yogini!  I think it's great that you are off medications - hope it continues where you'll be able to do that.   If I may ask, was it a matter of the medications helping curb the condition enough where you no longer needed them, or did you just decide to go it on your own?   I actually did try atenolol, but my main problem is dizziness even more than the tachycardia; the atenolol, unfortunately, made this worse, so I don't take it, but I probably should just for the beneficial effect..   If I had constant tachycardia, I would definitely take it.   You are so right, too, that it is a matter of finding the right medication combination (wow, that's a mouthful, huh?). 

[yogini]

I got on medications and started exercising, which I couldn't do without meds.  I think it was the combination of the medication and my body getting healing over time that allowed me to go off meds.  

POTS-related dizziness is often (but not always) caused by HR or BP issues.  That is why I thought a beta blocker might help. Sometimes betas help with tachycardia but cause low BP.  So that might be the thing that makes your dizziness worse -- and it might not be the right med for you at all.  

[targs66]

hi again, with apologies for the late reply!

I liked your question, Amyschi, about whether there's really a correlation between the dizziness and low blood pressure, because I've also wondered the same thing.  I only wish I knew the answer!  There are times where my blood pressure is "reasonable" at about 95/64 (which is not that low for me) and yet I feel at my absolute worst, which makes me think something else is going on.  I sometimes wonder if it's just sudden, fleeting changes in either BP and/or HR that make me feel very weak and dizzy - so sudden that they may be hard to catch on a regular BP machine?  I don't have POTS (was diagnosed with only having "borderline" POTS) but have been diagnosed with neurally mediated hypotension, so I don't get extreme tachycardia (I'm sorry that you do!).  Maybe that's why midodrine and Ritalin aren't that useful for me - although they temporarily raise BP, they may not prevent the sudden changes that make one feel so dizzy. 

I'm speculating!  Again, I hope this is all useful, even if it's just that you've found people who feel the same way as you!  Keep us posted on how you're doing.

 

[Amyschi]

Thanks Yogini.  I am so glad the exercising was able to improve your condition.   As far as beta-blockers, I think they definitely help tachycardia, but they are a double edged sword because they lower BP too, so those with hypotension find them problematic.  My pressure is generally not low, although I checked it a few times and it did lower it; I think the dizziness was just a side effect for me.   

Thank you Targs, very helpful, and I agree, that there are just changes going on that cause an orthostatic intolerance for whatever reason, not necessarily that we can always relate it to specific change in HR or BP.  I just responded to my other thread on "chronic dizziness" i.e. this topic too.   Don't feel bad about "speculating" - unfortunately, I think that's all any of us can do with this condition, and it helps just having friends to bounce ideas around with!   I am sorry that you deal with the neutrally-mediated hypotension - the drops in blood pressure must be so challenging. 

[targs66]

Thanks, Amyschi.  I agree - it is really helpful having all the knowledgeable people on this forum who have first-hand experience with these conditions to bounce ideas off.
I'll take another look at your other thread on chronic dizziness.  Good luck, and keep us posted!