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Who Takes No Medication For Pots And Have Seen Improvement?

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I get real discouraged trying all these meds and having my body unable to tolerate them. I know certian meds can make quality of life better which was exactly what I was hoping for but what if you can't tolerate meds can your physical quality of life still improve with time?

Has anyone improved without meds?

I just don't know what to do how long do I put my body through trail and error with these meds?

I've tried in the last 2 yrs

5 abortive migraine meds

3 preventitives

2 birth control pills

5 nausea meds

3 motility drugs



1 anti depressant


3 PPI's

2 anti anxiety meds

and I'm sure there is more I forgot. From all that I'm on .1mg of flornief (don't know if it helps), wellbutrin, metoporolol (trial) and some as needed nausea and migriane meds.

I'm sure your all going through these meds trials so I bet you can relate to my frustration. I guess I'm just angry and I'm coming on my 2 yrs "sick" anniversary so I'm feeling pretty down that I haven't seen too much improvement. When this first started I thought this would be a past memoryby now.

Thanks for listening


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Dayna..I am only taking O.2 mg of FLorinef and that is it. I still have Very hard days but for the most they have evened out(for now). I have a list long as yours if not longer of meds I have tried and have done nothing for me.

Trial and error I guess..


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Guest tearose

Well, I have not treated my POTS with any drugs. I have lymphedema so sodium is restricted... :blink:

Makes keeping up with my fluid loading a challenge but YES, I finally have improved HOWEVER, it has been many years.

here is what does work for me...hydration, electrolytes, vitamin, girdle and full compression pantyhose, seat cane...when I can, I walk on a treadmill...I work at staying active as possible without getting overdrawn on my "energy points", I eat small meals about every 2-3 hours.

I was not and am not a candidate for medications. I would do more damage to my ability to maintain a balance by taking meds. What helps dysautonomia hurts my lylmphedema and vice versa! I also studied and learned that my body needs to dump norepinepherine to get my heart to pump blood to my brain and vital organs so to slow it down would be dangerous. I also have some very slow heartrates and did not want to go the pacemaker and then defibrillator route! I had to find non medicine ways to treat my dysautonomia. It took a long time of wearing a heart rate monitor to understand my heart rate and beating patterns but is was good to do and I learned alot about my body during that time. I don't do stairs without paying a price so we also moved to a totally handicap accessible home too. I compensate so much that I forgot what all I have changed to accommodate for my physical challenges.

An unusual benefit for not having "allowed" for a diagnosis of depression and/or treatment with any type of anti-depressent medication has been for my medical team to REALLY SEE AND FOLLOW my path and REALLY SEE that this is a REAL PHYSICAL DISABILITY!!! Kinda been a mixed blessing I guess. I had this concern that if I allowed any doctor to stray from my physical challenges and label me incorrectly it would distract from my real physical issues. I am not saying this is what anyone else should do...it just worked for me.

It took a long time to try many things but I did find and MUST use non-medicine ways to survive with this. I did begin to show my most major improvements just about a year ago, once balancing electrolytes with higher levels of potassium and magnesium chloride.

Good luck in your search, let me know if you want more from my personal experience.

best regards, tearose

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Hi Dayna,

I've often wondered the same thing as I am very drug-sensitive. I actually felt better when some of my medication dosages were reduced! I still need the meds though...it's a very delicate balance. I think it is a personal balance that each person has to find for themselves, but I sympathize with your frustration. I know that reducing stress, getting a lot of rest, and doing rehab exercises (when I'm able) have all helped me. I'm sure that time has been a healer as well, but to what extent, i do not know.


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Guest dionna

i am still in pain and i still get lightheaded and dizzy everytime i stand up or sit up. i still pass out all the time, but i'm not taking any drugs and i think i feel better that way. the side effects plus the pots was too much for me. i'm trying a new diet, taking vitamins, and keeping up with hydratin and my salt. so far my diet has done wonders for my digestive system. i will continue it and later i will post telling my results and what i eat so others could have something else to try. i am looking for ways other than drugs.

dionna :blink:

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