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Poll On Medications And Therapies

Poll on medication and therapies  

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I was started on Bystolic, which is a beta blocker soon after being diagnosed almost 6 years ago. I was unable to tolerare Metoprolol as it made my blood pressure go to low and I felt terrible. Felt similar on the Bystolic, so Florinef was added within a day or two to help raise my blood pressure, and it has helped me. My current doctor wants to half my Florinef from 0.1 mg daily to half of that, and I am afraid of what may happen. I don't trust that he knows much about POTS. I stopped seeing a cardiologist after I seemed stable on the meds. I have been on the half dose of Florinef for about a week, and now none for two days as he has not phoned my refill in! I also find Ativan helpful in reducing the chest heaviness that sometimes goes along with pots, as well as helping with other general symptoms of not feeling good with pots.

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Most helpful: Bystolic (Nebivolol), the only one, 12 hour half life, beta blocker after trying atenolol, which made me into a slug! I can't be off of a beta blocker for more than 2 days or I will have a physiological anxiety attack!! I can't sleep without Klonopin, so that would be my second most helpful medication.

For those who are Hyperadenergic, Clonidine is wonderful for adrenal surges in small doses. I take half of .1mg twice a day. I halfed my Losartan to accomodate this for my hypertension. If you are hypotensive, these would not be the drug of choice, just saying. ;)

Least able to tolerate: Exercise...it is very helpful from a physiological stand point and I am an advocate of it, but I hate to do it. That's why I answered in that way. It's all in the way you worded it. I haven't found any medication that I've been unable to tolerate, although because I am a retired RN, I believe there are a lot of medications I wouldn't touch with a 10 foot pole, not poll, excuse the pun, because I am too familiar with the side effects. That being said, a lot of my medications that I am on, are because of me being proactive in my care, and doing a lot of research for myself!! I have a wonderful PCP, who allows me to experiment, and my ANS doctor is wonderful, as well, and has suggested many meds that have been used successfully, because of listening to patients symptoms, and the side effects that affect them adversely. Hope this helps you to understand why I answered in the way I did.

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Should I update the options here or leave it. its missing a few and clearly some havent had many hits.

Yes - updates are good

My best POTS meds are:

Tramadol and Bentyl

Addressing my immune system with:

Doxycycline and antimalarial herbs

Artemisinin and grapefruit seed ext. and serrapeptase or lumberkinase to break down biofilms ( addressing Lyme and coinfections with Protozoa ---- in turn will address bacteria and virus with breakdown of biofilm. Allows immune system to detect.)

Becoming Lowfat, whole food Vegan.

And addressing MCAS with:

Zantac 1/2 pill



Support for known dysfunction in methylation pathways with gene mutations

Numerous supplements

Very necessary for me is Turmeric helps with pain, depression and helps with immune system and to keep blood thinner for better blood flows. Lots of articles on its benefits.

Olive leaf as needed. Natural antibiotic.

(I no longer supplement with magnesium. It makes biofilms stronger and I'm trying to break those down. But it used to help with muscle pain and sleep.)


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