Medication Sensitivity

[jenwic]

I seem to be getting more and more sensitive to medications which is becoming quite a problem. When I am sensitive to a medicine I can have a racing heart, adrenaline rushes, sleeplessness, wheezing, and/or chest pain and discomfort. After I discontinue the medication, the symptoms go away.

I have had this problem with Singulair, Ciprofloxacin, Vantin, Macrobid, albuterol, and now Bactrim. This makes treating my asthma and now this urinary tract infection, very difficult. I really need some of these medications and my fear is that I will end up really needing a medicine, not be able to take it, then be in a real mess.

Do any of the rest of you have such an extreme sensitivity to medications and what do you do about it?

[Rene S.]

Yes, I too have this. Medications that I could easily take prior to dysautonomia, I can no longer tolerate. I get the same effects as you! Racing heart, sleeplessness, restlessness, anxiety and a general feeling of being sick.

I used to take zoloft 50mg no problem. I think I need it again but have tried with tiny doses and still feel like i'm going to jump out of my skin. I take klonopin and have for years, but now I find it to be stimulating instead of calming. It's all so frustrating. And I was always able to take Augmentin for an infection but the last time I tried, I got all of these awful mouth sores.

I wish someone could explain why we get such side effects. Even benadryl which is supposed to be sedating, now wires me so badly I feel like jumping out of my skin

I'm hoping someone can shed some light on this puzzle.

Rene

[gertie]

I have been in the medication nightmare for several years. I've become allergic to all antibiotics even in tiny doses. I've gotten by for about 30 years without an antibiotic but I've had some scares. There is a total of 3 med's I can take in small doses (as needed) but I know that can change at any time. I have the same problem with supplements.

[mjan]

Yes one of my earliest problems is synergism between one med with another. Had a hard time taking hypertensives. But Atenolol has been ok but not always helpful with keeping BP from skyrocketing. I am on less Aten..now and use Clonidine which really stops all AUTONOMIC symptoms. (Finally!!)

Albuterol is notorious for increasing BP/HR..so I use another one Xopenex HFA and it does not make me tachy. I remember reacting to Prozac..and sorry I hardly ever need an antibiotic..and wish they would avoid them if at all possible.

My nutritionist helped a lot with side effects and other supplements to build up my system and decrease my symptoms. But he is a specialist in his own right. Not like your typical nutritionists. He has specialized training.

Ended up having multiple meds eliminated and noted in my medical history.

Good luck in getting help.

Warmly, Jan

[potsgirl]

I have the same problem, to some extent. I cannot tolerate either Florinef or Midodrine, which makes it hard to treat my POTS/OI. I usually have to start any new med with tiny doses and gradually dose myself up. I haven't been able to start any new meds - the only ones I'm on are the ones I've been taking for about 10 years now. It's the nature of the beast..

jana

[EarthMother]

I think one of us on the boards has posted about some metabolic testing (new) that can be done to see if we are processing various drugs in our system. In some cases, were medication sensitivity was observed, it was because we simply can't metabolize that particular med at this time. So for instance, whereas the normal half life for a particular drug might be 7 hours, our response may be like 7 days.

My own sense is then, that what we can do for medication sensitivity may be related to our ability to process a particular drug. And I am also going to guess that our bodies ability to metabolize particular chemicals may be different over time. I think there are studies about how during stress (they looked at Isralie solders) our blood brain barrier is more permeable. If this is the case, then it may be that our body during a hyperadrenergic phase of POTS is also processing other chemicals in a way that is different than when we are not experiencing an acute episode.

Obviously, I have no idea ... all just speculation. My own inclination is to try TINY pediatric doses of any new med (or even older meds that I am trying again) and see how my body responds on them. Sometimes I may only need the tiny doses, other times I can increase the dose when it seems my body has given it the green flag.

Good luck finding information that works for you.

[maggie]

Earthmother I have posted on this forum for the testing of drug interaction. I had it done and it has helped me so much. Now I know actually what drugs I can take and what drugs I can't, it takes all the guess work out of treating me. The web site is www.pgxlab.com it's a part of of the University of Louisville of Pathology and it's called Pharmacogenetic testing. They were so helpful to me. I still have the doctor's phone number who helped me and when a dr wants to try a new drug I give the dr a call and she tells me if I can handle it or not. You are correct in stating that the liver enzyme can't metabolize the drug. In some cases it's a little defective in other cases such as mine, I can't take some meds at all. I hope this helps those on the forum that are having such a difficult time with meds. Feel free to pm if you have questions in regards to this testing.

Maggie

[tinkerbella]

I'm sitting here so sick for the past 3 weeks from florinef....... have to travel with a bucket in cabs. Don't want to eat much much any more and i swore i was getting high from the florinef and I'm so dehydrated from being sick.

Tomorrow can't come fast enough for me to get to the hospital....everywhere I go they make fun of me of the lady who is allergic to everything!!!! Ha, ha, ha, NOT!!!!! especially when I got the cortisone shot in my butt and they were fighting over what I could have as I was ready to barf and my head hurt so bad. I said just give it too me. wrong side, I still can't walk!!!!!!!!!!!!!!!!! I can't take this florinef and I'm tired of all of this. Now I feel like I'm getting sick on top of it all.

Another thought about all the asthma people, most of the asthma meds case racing hearts. Question? Do you really have asthma? Just asking as I was thought to for almost 20 years then they found out NO I don't have it. It was Pots, Just a thought in case they haven't had you see a plummy instead of a allergist.

I'm so mad I ever took all those meds for all those years when I has something else wrong with me.

Good Luck all

blessings BellaMia~

[jjb]

The sensitivity to the benydryl sounds like it could be a dopamine problem. It like many antihistamines and antiementics (work in a similar manner) are dopamine antogonists and can cause all sorts of symptoms. Often they can cause restlessness (inclduing restless leg syndrome), anxiety, insomnia etc.

Typically I am med sensitive too, but when my dysautonomia was at it's worse, I was very senstive to the dopamine antags. At the time, I was also sensitive to Zoloft. As well has terrible effects from benzos (such as klomopin).

I would guess you may have med induced RLS or something similar ... I do think these can occur with the dysautonomias.

In a book I have on RLS, there is a chapter that talks about med induced RLS. They recommend these folks avoid dopa antoags and when it comes to antidepressants, they suggest the stimulant meds such as wellbutron .... many would not consider this is thye have anxiety and/or insomnia assuming it will worsen, but sometimes this stimulant med can actually help with both as it helps with dopamine instead of blocking it.

About the antibiotics ... again, I am sensitive too. I would wonder if your mouth sores are yeast overgrowth. These days many docs suggest a good probiotic to help prevent this type of thing.

Yes, I too have this. Medications that I could easily take prior to dysautonomia, I can no longer tolerate. I get the same effects as you! Racing heart, sleeplessness, restlessness, anxiety and a general feeling of being sick.

I used to take zoloft 50mg no problem. I think I need it again but have tried with tiny doses and still feel like i'm going to jump out of my skin. I take klonopin and have for years, but now I find it to be stimulating instead of calming. It's all so frustrating. And I was always able to take Augmentin for an infection but the last time I tried, I got all of these awful mouth sores.

I wish someone could explain why we get such side effects. Even benadryl which is supposed to be sedating, now wires me so badly I feel like jumping out of my skin

I'm hoping someone can shed some light on this puzzle.

Rene

[jenwic]

I definitely have asthma, unfortunately. I take a steroid inhaler and steroid nasal spray for my asthma and allergies. When I get a cold I have to increase the steroid dosage. I tried Singulair, but woke that night with my heart racing and pounding until I thought I would die. I really wish I could take it, because even though my heart was racing, my breathing was much improved!

Maggie, I will check into this testing you mentioned. I really hope I can get this done. Every time I try a new med I feel like a guinea pig waiting to see how bad it will make me feel.

[erik]

I'm mostly on the insensitive side so far, but had some mild weirdness from fludrocortisone (and minimal benefit, though I might try higher dose eventually). The genetic testing that Maggie brings up is really intriguing. I've also read of research attempts to use a set of reaction tests to suss out potential issues (kind of like an allergy test does)... but that is less precise.

I happen to be totally immune to codeine & similar. I do not know yet, but that trait implicates this:

http://www.fpnotebook.com/Pharm/Metabolism...502d6Isnzym.htm

Note that other things that come up with POTSen (some beta blockers, some SSRI's, benadryl) also interact in various ways with CP450-2D6... so I have some heads-up that things might need dosing or drug selection considerations. So far, this is just a guesswork thing or something perhaps to explain things later after trial-and-error which is inevitable anyway (unless I can do that genetic thing and know for sure).

[Lizzegrl]

Erik that is interesting info. Does it indicate that if you don't metabolize this, that the medications on the list are less effective or nonabsorbed? Or is it the opposite? I'm struggling. It makes me curious because I've been told in the past that I am a non-absorber of inderal so the levels I had in my body would have killed a normal person. This was over a decade ago and I did get benefit from the med, but the cardios were not all that thrilled. Is this a genetic thing? It makes me more curious to see amiodarone on the list of inducers - exaggerated or reduced response? My father was on what was considered a small dose when he died, but if he was metabolizing it differently, the dosages would be virtually a shot in the dark. They think I have the same arrhythmia so it makes me very curious!

I have asthma too, and only use xopenex because my heart rate and bp go nuts with albuterol. The xopenex makes a big difference. Also have you tried accolate instead of singulair? I actually have been on both and while they say they are virtually identical, I have had no issues at all with accolate. While on singulair, I sometimes wondered if it made my heart race. It is a thought.

Since this is a sensitivity thread - Does anybody have issues with tylenol? I cannot take anything with any amount of acetominophen in it. They have tried to slip it to me in the past (not believing) and I invariably get very sick to my stomach, dizzy, and have passed out, but I've never heard of a single other person that has had issues with it. Neither have my docs. Now, the just say tell them you are allergic because we have no idea why, but your body cannot take it.

[Renata]

Do any of the rest of you have such an extreme sensitivity to medications and what do you do about it?

Adding my name to the list - I don't really do anything about it except be super careful, and start everything at tiny doses, no matter what I'm prescribed.

[erik]

Erik that is interesting info. Does it indicate that if you don't metabolize this, that the medications on the list are less effective or nonabsorbed? Or is it the opposite?

Each drug is different, I'm afraid. It's over my head except for the simplest cases. To my knowledge, being "metabolized" can mean "activating", "deactivating" or just switching between two active chemicals with different characteristics and lifetimes. Plus there is a foot-race with processes that are filtering each thing out. So I believe the answer is a clear: It Depends!

Genetically for that particular enzyme, they say people can be slow, intermediate, rapid or ultra-rapid metabolizers. Again, this could mean something different for each drug... and there are other such enzymes too! However, if you happen to know you're an unusual metabolizer for one of the drugs... it gives a vague heads-up for others on the list. Interestingly, the drugs themselves can promote or inhibit the enzyme... affecting other drugs and "feeding-back" on themselves.

The Codeine case is simpler, because codeine itself is inert in the body and relies entirely on that liver enzyme to convert it into the active ingredient (so they call it a "prodrug"). In those simple cases, if the activating enzyme is deficient, the drug is less effective. But I think propanolol might be the opposite, where "metabolizing" means de-activating, perhaps filtering it before it hits the blood... but I'm uncertain. So if they measured high amounts already in the blood, I don't think enzyme metabolism would explain an insensitivity (perhaps denervation or competitive agent???).

The activity of these things changes, despite a genetic predisposition. However, this doesn't explain why people's sensitivities change over time with POTS... not directly. Perhaps indirectly, IF there are any indirect autonomic influences on these things... I don't know if that's possible or not. It's fascinating and confusing to ponder, at least!

[carinara]

Iam also very very sensitive to all kinds of medications, thats why i got myself an appointment to get pharmagenetic testing done. I have first read about this option here on dinet a few weeks ago. I have to get some bloodwork done in 2 weeks. I really hope it does help.

[gertie]

I am also called "the woman allergic to everything" in my town. I called pgx lab that does genetic testing & they are very nice. They told me that the problem I have with antibiotics & hormones are probably a true allergy & the testing wouldn't serve any purpose for that. I've tried just about every drug over the last 20 years & had allergy testing for a lot of meds. I realize if I had the testing done whatever the results I still couldn't take the meds.

[jenwic]

Yes, I was on accolate once several years ago, but when I changed doctors the new one doesn't want me on it because of my other meds. She said it could damage my liver (?????) I wish I could still take accolate.

[godslyric]

I have trouble with foods, vitamins and drugs...B-12 sets me off like a rocket and know one knows why, its as if my nerve endings are being scrapped along the sidewalk. Although it may be the folic acid as apposed to the b-12, Im not sure. A doctor took me off all carbs 10 years ago to attack Candida. I was carb free fo 4 months and when I ate a Sweet Potato I ended up in an ER with symptoms off the chart. It took me almost a year to get back to being able to eat good carbs again. Still today if I eat to many carbs I get major Migraine Auras. Its like a short LSD trip without the head ache. Id love to know if anyone else here has problems with B-12 or Folic Acid? In Christ, Jeff

[Troy]

This medication sensitivity is the most troublesome out of all my symptoms. I have an adverse reaction towards all sedatives, analgesics, stimulants, opiates and even alcohol. This makes it extremely troublesome and upsetting as I suffer from chronic pain and need painkillers. I have tried many times to take painkillers in small doses and ended up in the ER with adverse reactions, this never used to happen to me either before the Dysautonomia. I think the cause of this problem needs further investigation by specialists out there.

[jenwic]

Amen!

[mkoven]

count me in. some docs think i'm nuts to have so many bad reactions and allergies. i really want to avoid painkillers and antibiotics in case there ever is an emergency when i have to have them. i'm allergic to so many of each. it would be great to have a good explanation. but I do worry if I ever needed surgery or something else lifesaving.

[ramakentesh]

I think there is something more to the medical sensitivity in POTS than is currently understood. The migraine sufferer's mind appears to be much more easily overstimulated from visual stimuli - perhaps our sympathetic systems are the same but to every stimuli.