Medication Sensitivity?

[lejones1]

I'm pretty new on here and was just recently diagnosed with POTS so I don't know a lot about the weird symptoms that can go with it. I think I've developed medication sensitivity though and I have some questions about it - I've read that some other people have the same thing but I was wondering why it happens and how to deal with it? Just no medications at all? Or small doses?

It's not like an allergy and I don't even get any of the normal side effects of the medications. The reaction doesn't start right away - usually about 3-4 days after starting the medication and it stops within 24 hours of stopping the medication. I feel "wired but tired" - like I'm exhausted and out of it but also really panicky and tingling all over. Once I tried to push through it and it did not go well - I became basically catatonic and felt like I was being shocked with electricity or something.

I know that this started with POTS because I never had trouble with medication before and I was actually on antibiotics just a couple of weeks before my POTS symptoms started (suddenly after getting sick) and had no reaction. And then a few months later I couldn't tolerate the same antibiotic. It's happened in response to 3 different classes of antibiotics and now Valtrex, which I'm taking to suppress EBV, so I seem to react to a wide variety of things. But only if I'm on them for long enough - I was under anesthesia a few months ago and on Vicodin for 2 days afterwards and tolerated both of those just fine.

I'm going to see my GP about this tomorrow but I'm afraid he won't believe me. I'm wondering if I should ask him to look into anything specifically? The last time I talked to a doctor about it he told me I was just afraid of taking medication, which I know isn't true, I just hate it because it makes me miserable!

[Orthohypo]

Yes, I have those same issues with the bodily reactions. The problem is whether I am better with or without the meds! I can't get through a day without Ritalin, but then it can give me rushes and when I really need to rest during the day it won't let me. Valtrex attacks my gut and I can't take it in the recommended massive first dose then decreasing doses so I do it to what I can tolerate. My doctor acknowledges the sensitivity to meds. So maybe what we need is a brochure for our docs who don't know about dysautonomia. Something based on what Dr. Rowe presents on the YouTube video since it's in their lingo.

[bebe127]

I'm sorry you are dealing with this.

I think it's important to note that everyone is different and different medications affect people differently. The dr. that told you, you are just afraid to take meds is insensitive to say the least (I'd like to say worse, but am trying to keep this -pg ). For instance, I can't tolerate SSRI's but others seem to do really well on them. There are even supplements that I can't tolerate, but others seem to do well with them. You have to learn to listen to your body. If it doesn't feel right, it's not right. If a dr. can't/won't understand that you and only you know your body (you and only you know how you feel), I would seek out a new doctor. Everyone is different.

Hope you get some answers and relief soon.

[lejones1]

Thanks y'all, at least I know I'm not alone with this.

Have you ever tried taking small doses of medications your sensitive to or is it really an all or nothing thing?

[Orthohypo]

Dr. Svetlana (can't recall her last name) in the documentary by DINET on YouTube said meds for us sometimes have to be at pediatric doses.