Intolerance To Any Medication?

[lejones1]

I tried my first beta blocker, metoprolol, over the weekend and couldn't tolerate it. I know it's pretty common to not tolerate beta blockers, so that's not so concerning, but the weird part is that I've had the exact same reaction to 3 other completed unrelated drugs - doxycycline, a cephalosporin, and Valtrex. In fact the only things I've been able to tolerate since this started were Diflucan and hydrocodone, and those were both just for a day or two at a time, so I'm not sure what would've happened if I've stayed on them longer.

Basically what happens is, 2-3 days after starting a medication I start to feel really out of it but agitated at the same time, like I'm constantly on the verge of having a panic attack but also like I'm about to pass out. My skin crawls and feels like it's burning/tingling, sometimes my muscles ache. I've tried to push through it a few times and it just gets worse, like I feel incredibly ill all over and get what feel like electric shocks though my body. It's really unbearable, to the point where I'll just lay in bed for 24 hours straight until the medicine leaves my system and I start to feel better.

For a little background, I don't know what's causing my POTS. I was just diagnosed in January but have had it since May, when it came on suddenly. I've been diagnosed with "post viral idiopathic chronic fatigue". I still have swollen lymph nodes and some things that can't be explained by POTS, but I've seen a CFS/ME specialist, who doesn't think I exactly fit in that category, so I don't really know what's going on. I never had a medication intolerance before May, aside from a sulfa allergy diagnosed when I was little.

I know some of this sounds crazy, but I'm asking here because I hope that someone will have heard of something like this or even just how I can figure out what's causing this or what type of doctor I should see about it. I'm so tired of my doctors thinking "afraid of medication" - I'm not, I'll try anything, they just all keep causing the same symptoms - or telling me that it's impossible to have the same reaction to such different drugs. I would think so too, but obviously it's not, because it's happening to me. And it's scaring me because I don't know how I'll ever have a chance to improve if I can't take any medication.

Has anyone ever heard of this sort of reaction? Or what do you do if you just can't tolerate any medication at all? Why does that happen?

[issie]

Yes, this is common with POTS. We are all really sensitive to meds. It may be that you can lower something down to nearly nothing and tolerate it okay. I have a whole page of meds that I tried and couldn't tolerate ---even with very small amounts. So, don't feel alone in this. I also have a sulfa sensitivity and have to be careful with other meds. It could be connected to a mast cell problem --because a good many of us with this problem are sensitive to sulfates. I think it's a learning process --just keep up with what you've tried and what they do to you. Oddly enough, I may not be able to take one med but can another and it be in the same family. So, it's not necessarily true that you can't take anything in that family of drugs. The only way to find out is trial and error.

Issie

[bebe127]

lejones1,

I am with Issie. Honestly, you two are the only ones that I've experienced with a Sulfa allergy (for lack of a better term). I am currently on Metoprolol (25mg. 3x)and have been for about two years without any problems that I know of. I tend to have hypertension which leads me to believe that I might be hyperpots, but no dr. has tested or even suggested this as a dx. It seems as though many of us tolerate certain drugs so differently and a different drug in the same family might give different results. It really is a quandry and on a trial and error basis. I also take Xanax (.5mg 3x, but double up when necessary). I really feel that the Xanax helps me the most. I too suspect a mast cell problem with myself that I will hopefully attempt to figure out in the near future.

Your 2-3 days after medication sound like my experience without any medication. After an "episode" I would only be able to sleep; it was like my body was in such a need of rest because of all the overworking it was doing to keep my homeostasis in check. I too don't know what type of POTS I have, I only know that the dx dr. said, "you probably have POTS". I don't have swollen lymph nodes nor do I experience syncope, blood pooling or the assortment of other issues that normally follow a dx of POTS. The only determination in my case was a postitive TTT in which my hr went from the 70's into the 150's+ within 3 minutes.

I too have been told, "that is not a side effect to this drug" or "I don't know why you're feeling the way you do, that's not normal". I know it is quite frustrating and I'm so sorry you are going through this. The only thing we can do is to keep up the search. Have you seen an Electrophysiologist? Have you had a TTT (Tilt Table Test) done? Maybe an endochrinologist or an immunologist might be in order? I wish I had answers for you

I do hope the right doctor is just around the corner for you!

Well wishes going out to you!!

Bebe

[angelloz]

Count me in on this too. I was allergic to sulfa drugs when I was a child but nothing else. I took many medications for migraines, then when I became ill I became intolerant to about every medication I was given. Mine is a bit different as I feel horrible within 20 minutes of taking many medications. Forceful heartbeats, hard breathing...sometimes back pain and quite often pre-syncope. I hate it and like you wonder how to improve. I also have a MCAS diagnosis so am taking Claritin, only 1/2 tablet at a time. I'm OK with that I think. I think many have this issue. Do we metabolize things to quickly...or does it build up over time?? I have tried a couple of things where the first dose webt well but not the second. Or do we need to build up a tolerance? It is difficult to explain to doctors...or in the ER . I noticed when I was able to put back on a bit of weight I did better with medication. Sad to say I have lost weight again inspite of trying to gain.

Keep us posted! Angelloz

[Kellysavedbygrace]

I'm with you all in having med reactions and have a growing wide assortment of chemical issues. As time goes on I'm learning to identify the warning signs. In fact just today the bug man came and sprayed for ants and roaches. (we live in a tropical region of FL so this is very common.). Last month when he sprayed I noticed that evening I crashed so I thought this time I'd really pay attention to what happens following his spray.

Literally within moments of him spraying the room I noticed the faintest taste of chemical in my mouth. Within 10 mins I was lying flat on my back and had the icy spider tingling/ crawling feeling up my neck, through my head, down my shoulders, arms and legs. I felt faint and knew I had to leave. I left the house, went out with my sister to a small cafe for lunch and after a few hours away feel much better. I'm now back home lying down in bed but have the windows open and there is a good breeze. I'm quite sure had I stayed with the windows closed I would be a wreck right now. I'm not sure how long this chemical has been affecting me, and although I've suspected it to be a problem it isn't until today that I know with confidence we can no longer have this chemical sprayed. I'm quite sure my reaction is a mast cell activation issue.

I have had loads of problems with meds. Some I've had immediate reactions to and some have been delayed reactions. Here is a list of drugs I've tried and can't tolerate:

Metropolol

Nadolol

Propranolol

Immitrex

Fludrocortisone

Prednisone

Aspirin (a baby aspirin will put me in bed with SoB for 2 days). Even get reactions at 10 mg. Where I get this chemical burn feeling in my bloodstream.

Any NASID in a moderate or high dose- can sometimes tolerate a half dose.

Midodrine

Cymbalta

I am able to take the following and have some improvement with these. Also I just want to encourage you to keep trying, and like Izzy said, you might want to try adjusting the dose. We are each different and It is worth it to keep testing.

Adderall

Loratidine

Famotidine

Pyridostigmine

Clonazepam

Lo Loestrin FE (BCP to limit anemia)

[ophelialit]

Count me in on the sulfa allergy as well--took a dose in college for a UTI and thought I was dying for about 3 days. I'm also EXTREMELY sensitive to meds...my husband and I always joke that I'd make the worst drug addict ever. If I'm given a 30-pill prescription for something like Percocet following a dental procedure, I can only take 1/4 of a pill at a time, and even then I can only tolerate three or four doses before I have to quit taking them completely.

[HopeSprings]

I can't tolerate medication either, or alcohol or chemicals like Kelly mentioned. I think these sensitivities are all related somehow. This is also common in CFS. Makes treating this illness really difficult and after so many bad reactions, it's scary to try new medications. I have no idea what causes this.

[issie]

Part of it is genetic and genetics are finding issues with P450 liver pathways. So things build up and re-circulate. That's why sometimes, less is better ---at least for me.

Issie

[lynnie22]

Well, count me in as well on sulfa and other allergies post POTS. I am allergic to every antibiotic I have taken this past year, as well as had a breathing problem with metropolol, although fine with inderol. Go figure. I agree with all of you to take a tiny amount and see how it works for you. The last time I took an antibiotic, it was one I had been given the year before when the dr suspected lyme, although not a true positive, and then a year later, it took two days for me to develop this rash and swelling that lasted days. So I know about delayed reactions. I don't know why the delay, maybe it's the half life of the drug. Still, I would test in small doses, as suggested.

[ramakentesh]

http://circ.ahajournals.org/content/107/23/2949.full

[Jon6945]

This thread it a bit old but I wanted to bring it back and say that I too have a major sensitivity to medications. What "lejones" said in the very first post on this thread is exactly how I experience the sensitivity... its so bad that I have to lay in bed for 24 hours till it is completely out of my system. This goes for almost all meds. Sometimes it starts out okay, but by day 3 or 4 I have this reaction. I was wondering if anyone else had any insight about what is going on in our bodies that makes this happen, and if there are any suggestions into helping it.

Its seems like my biggest problem is not actually the Dysautonomia and the Autoimmutne problems I have, but rather the inability to tolerate medication, which makes it impossible to recover from this illness.

[Katybug]

There is pharmacogenetic testing that can be done that can help a patient and doctor understand how they will react to certain meds based on certain gene mutations. It is apparently accurate and well respected althouvh new and not widely known. It is conducted by a lab called Genelex and you or your doc can order a kit for testing at genelex.com. You will need a doc who will agree to sign off on the testing as they need to fill out a small portion of the form. Then you fill out the rest of the form swab your own cheek and send it off in a prepaid fedex package. The results are sent to you and the doctor and then you access their website to get an understanding of the results and what may be alternate meds for you based on the mutations. These genetic mutations are what control the enzymes that metabolize meds and so have been shown to predict how your body will metabolize certain meds. Hope this is helpful for you.

[gjensen]

I am a bit surprised how sensitive that I have become to some things. Sensitivities that I did not have before.

[ramakentesh]

I used to be kind of like this until I was able to increase my blood volume with florinef. From then all meds work as they should without any major problems. it appears low blood volume can interfere with vasoconstrictors and other meds.

[leydengs]

I'm with everyone else, I am very sensitive to medications. I have to always start with 1/2 dose on things to see how I do. I cannot take any pain pills (unless they are very light doses) and I tried POTS meds and couldn't tolerate those either. I have to find other solutions like adding salt to water and foods. I have to rest when I'm tired or my POTS symptoms get worse. I have a fan near me at all times for when I start to get too hot.

[YolaInBlue]

I am also very sensitive to medications. I have some anxiety before trying new ones.

My mess started after a dental surgery and large doses of Advil (800mgx3/day) my dentist prescribed for pain and swelling. I had my first episode about 10 minutes after I took my night dose of Advil 800mg. My heart was beating so fast I couldn't move or talk. I always took Advil or Motrin for migraines, but at 200-400mg a day never had a reaction. I still take Motrin sometimes and it's effective at just 200mg. I had a bad reaction to a pain killer with codeine in the past. I couldn't tolerate Bystolic, but I was fine with Pindolol. Curently I don't take any beta blockers.

Because I suspected MCAS, I tried taking Zyrtec and Zantac together, and those gave me an episode of tachycardia, raised BP, dialated pupils and all other dysautonomia fun.

I have been sensitive to chemicals, like bleach and perfumes all my life, but now I have even stronger reaction to those. About a week ago I went to my cardiologist and a nurse was wearing a strong perfume. She couldn't take my blood pressure, because machine errored out several times, finally when she took it, it was 88/53. Few minutes later I started getting a migraine. Dr. Benarroch at Mayo suspects that migraines play a big role in my dysautonomia episodes, but I feel like there is more to it. After all, something triggers migraines and sometimes I have episodes or lightheadness without having a migraine.

I am on Florinef, but it doesn't help with my sensitivities. It helps a great deal to keep my blood pressure more steady though, so even when I get episodes, they are not as bad as in the beginning.

[JuneFlower]

My daughter started off having severe migraines and was put on Topamax and Trazadone and Effexor. We are getting her off all of them. Trazadone can cause low blood pressure-she still has it now that she is off it. Topamax can cause anorexia as well as effexor. She lost a bunch of weight after being on them quite a while. Now she is almost off everything. The effexor is a slow taper. But she has gained 5lb! We are so happy!

June

[srb]

I didn't know your daughter was also on Trazadone, JuneFlower. That was the first med I was given for insomnia and it turned out to be a terrible choice. It caused lots of problems for me including heart arrhythmia and now I am not allowed to take it! I think that drug is not a good one for some people with autonomic issues. But my primary prescribed it before the dysautonomia dx.

[JuneFlower]

No she stopped the trazadone a while ago. She still has all the same issues so it wasn't the drug.

[ramakentesh]

Anyone else find their med sensitivity went away after long term florinef - I bet There are a few.

[castronovo112587]

i am allergic to and or sensative to every single med! It is such a pain lol.