This site lists a variety of drugs for POTS and I am curious about these two:
Mestinon Wellbutrin
Any experience with these or other drugs?
I am thinking my high heart rate issues are adrenergic or autoimmune oriented.
Posted by VV (Member # 38828) on :
Hmm... upon further reading, these two sound a little ugly
Posted by beaches (Member # 38251) on :
I don't know anything about Mestinon. Wellbutrin can cause anxiety, so if that's already an issue for you, it's probably not the best choice. And FYI it is an antidepressant, so check out side effects before considering it. It isn't one that packs on the pounds though.
From what I know, florinef is one of the main meds used to treat POTS.
Posted by VV (Member # 38828) on :
I already take florinef. I think that's more for hypotension and not tachycardia.
Posted by beaches (Member # 38251) on :
I would think someone would have tachycardia if he or she is hypotensive?
When did you last have your BP checked? Could it be that your florinef dose needs to be increased? I think the body develops a certain tolerance to meds we've been on for awhile and sometimes the doses or meds need to be adjusted. Could this be the case with you?
I think betablockers are also used to treat POTS but I could be wrong. And betablockers can also have unpleasant side effects which I am sure you know.
Posted by VV (Member # 38828) on :
My bp usu looks good. I don't think hypotension is the only cause of tachy, hence my interest in drugs with other mechanisms.
Posted by beaches (Member # 38251) on :
No, for sure that isn't the only cause. I think Lyme itself can cause that and who knows what else.
Have you checked into the betablockers?
Posted by Herbs15 (Member # 34777) on :
Have you tried giving up gluten, dairy, and sugar? Ceftin, then omnicef.... Plus a beta blocker...and these dietary changes have completely controlled my POTS.
I was almost bedbound by my lyme induced POTS... And I still get tachycardic when upping my meds or herxing - but otherwise a slow and steady antibiotic approach with the betablocker and diet worked for me .
Posted by lax mom (Member # 38743) on :
I'm on a betablocker for POTS. It's helping me alot.
I also now have to wear compression thigh highs to keep the blood flowing to the upper portions of my body.
Also, electrolyte drinks and exercising lying back on a recumbant bike.
My norepinephrine levels shoot up when I stand.
I feel like I have the hyperadrenergic form of POTS, but I'm still being tested.
Posted by VV (Member # 38828) on :
thanks lax mom
how does it affect your mood? do you feel less "fight or flight" using beta blockers?
are there ways of lowering norepinephrine production as well?
I suspect I've been making too much for a few years Posted by VV (Member # 38828) on :
Also, does it do anything for fatigue?
Posted by beaches (Member # 38251) on :
OK good to know that my memory is still good re: betablockers being used for POTS. Whew, we have to take what we can get!
What betablockers have you gals used to help the POTS?
Herbs15, I never heard of "lyme induced POTS" per se but I learn something new every day. It's a typical dx that goes along with CFS. Just curious--did a doc actually tell you or write down that you had "lyme induced POTS" b/c that would be huge.
And I never would have associated giving up gluten, dairy, and sugar would help with POTS.
Glad to hear you are doing better.
LAX, what betablocker are you using to control POTS? What is the hyperadrenergic form of POTS? I've never heard of that.
Posted by lax mom (Member # 38743) on :
I'm on Metoprolol. Supposedly Clonidine is helpful for the hyperadrenergic form where your BP increases when standing.
I don't know what the treatment for lowering norepinephrine is other than Clonidine. My Cardiologist wouldn't RX it for me because he said it lowers BP too much.
I don't know if Lyme caused my POTS or not. My LLMD has ANS dysfunction as one of the 15 differentials...so it could be an entirely seperate entity in some people, and caused by Lyme in others...who knows.
The compressions stockings help most with the energy because my brain is actually getting the bloodflow that it needs.
The betablocker helps slow my heart and stop the sweating that was happening with the slightest exertion.
Posted by lax mom (Member # 38743) on :
It's not affecting my mood. I've added CoQ10 just in case.
It DEFINITELY helps with the fight or flight response which was overactive for years and was pure misery.
Posted by VV (Member # 38828) on :
lax mom,
any other symptoms it helps with?
Posted by VV (Member # 38828) on :
What kind of docs will rx for POTS? I don't want too much trouble. esp with the "Lyme" label. I also don't want to do a tilt table. Sounds way too stressful for my condition.
Posted by lax mom (Member # 38743) on :
I think it may help ever so slightly with brain fog because of the blood flow actually getting to my brain.
Endurance is a biggie. At first I could only lie on the recumbent bike and do 5 minutes. I'm up to 30 minutes now. At least that type of exercise is strengthening my heart and leg muscles.
I haven't tried exercising in an upright position yet.
I know some will say treat Lyme and POTS will go away, but in my case, I've been treating Lyme and neither has gone away...so treating POTS is giving me a bit of quality of life.
Don't underestimate the severity of ANS dysfunction...it can make your life miserable.
I read somewhere that with POTS, it's like your body is running in place all day long, just trying to hold yourself upright.
Posted by lax mom (Member # 38743) on :
I don't mention Lyme to non-LL Dr's. I went to an Electrophysiologist (Cardiologist). He did a lying and standing norepinephrine level and diagnosed it that way.
I also just went to a Neurologist who specializes in ANS dysfunction.
See if there is a specialist near you on this website:
"He did a lying and standing norepinephrine level and diagnosed it that way."
I've never had norepinephrine levels checked. How do they do it?
Does your pots come and go with flares and other symptoms? I seem to have episodes where it is much worse.
Posted by lax mom (Member # 38743) on :
He ordered it on a lab slip.
The lab had me lie flat for 30 minutes, then drew blood.
Next, I stood up for 10 minutes and then they drew another vial of blood.
Mind you, I was already on a beta-blocker, so I bet my levels would have been much, much worse without it. Even so, my norepinephrine levels tripled just from standing up.
It was very validating to know it wasn't "just anxiety", which is what I've been told forever.
With flares, everything is worse...POTS and all.
Posted by VV (Member # 38828) on :
Is yours worse in the morning?
Any idea of the role of cortisol on norepinephrine?
Is there a danger with beta blockers to lower heart rate too much?
Posted by beths (Member # 18864) on :
My POTS didn't get better till I treated babesia-my Dr's wouldn't give me anything for the POTS other than salt water and compression hose.
My POTS is a little worse in the morning-but other than that, I don't really notice it!
Posted by lax mom (Member # 38743) on :
VV: my resting heartrate was 100. The betablocker lowered it to 75.
Posted by VV (Member # 38828) on :
Do you take it as needed, or is it everyday?
Posted by lax mom (Member # 38743) on :
Everyday, 2x/day. But, I think people with public speaking phobias, etc take it as needed.
Posted by VV (Member # 38828) on :
do beta blockers effect myclonus/twitching at all?
Posted by Told you I was sick (Member # 35068) on :
VV,
I know that the Inderal that I've been on for a couple of years has tempered down my fine tremor (especially noticed in my hands when arms outstretched in front of my body). Not sure if it would have the same effect on more aggressive, unintentional bodily jerks/movements.
Hope that you find relief from the POTS symptoms soon. They're the pits. Ha- I should coin that a new expression: "POTS is the pits!"
I'm thinking pretty good bumper sticker potential! Posted by lax mom (Member # 38743) on :
The beta-blocker definitely calmed down my eye/face twitching.
Posted by Life+Lyme (Member # 33568) on :
The TILT test really wasn't that bad; I've had two. A cardiologist can work with you on your POTS, or there are even Dysautonomia clinics. Well, there are some in the South, and if they are here, I figure they are elsewhere!
I'm on Florinef and could probably stand to be on a beta blocker.
I will tell you that almost three years into treatment, my tachycardia is much better. I use to be 120's-140's resting and am usually in the 80's now.
It's hard to say if the lightheadedness will ever completely go away. I always wonder what damage is caused by Lyme and what is just a result of an active infection (will go away along with the infection).
Posted by mlg (Member # 35383) on :
My LLMD said that Lyme creates POTs on some patients. I use Atenolol. But my symptoms got better after treating Babesia.
Posted by VV (Member # 38828) on :
Do you guys have any side effects from the beta blockers?
Posted by lax mom (Member # 38743) on :
I haven't noticed any particular side effect that's related to the beta-blocker.
I weaned up to my full dose very slowly because I'm soo sensitive to meds.
When you've had a racing heart as long as I have, it feels weird at first when it beats at a normal pace...but you get used to it.
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