For Those Not On "medication"

[firewatcher]

For those of you who are NOT on meds, why not?

Did you develop tolerance and they just didn't work anymore?

Did nothing work to begin with?

Did the side effects outweigh the benefits?

I am finding that I am developing tolerance to a few of my meds and it is taking more to do the same thing. (Klonopin and Allegra)

[potsgirl]

I tried to take both Florinef and Midodrine, but the side effects were horrible, and I finally gave up. I wish I could take them, because I have really low BP, but I would need something to combat the severe headaches that I get taking them, and so far, nothing has worked are is too expensive to take. If anyone has any ideas, I'd love to hear them. Also, I'm leery of taking a steroid.

I can't take any BB's or drugs to help with my heart problems because almost all of them are for those who are hypertensive, and I have severely low BP. Ugh.

Happy New Year's!

[Guest tearose]

I am not on any for several reasons...

I am sensitive to drugs and have terrible side effects; BB's gave me severe chest pain and worsened a 1st degree heart block.

Sterioids made me swell, loose muscle strength, loose bowel control and blow up like a balloon. I have developed many allergies to antibiotics. I had to come off my estrogen patch because I was not absorbing and processing it properly. Simple OTC drugs give me trouble...Ibuprofen made me totally wired and off the wall...probably from the effects on Melatonin...Tylenol will make me sleepy or knock me out...Asprin makes me bleed way to easily!!!

I have another condition that interferes with things like florinef; I have lymphedema in my left arm and left leg and sodium based meds cause horrible pain and swelling. I have trouble with digestion and food or meds will not be absorbed in my system properly. Because of all my reactions and challenges, I discussed the options with my Mayo doctors and they said I was wise to refuse to just try something off label because they are uncertain of what damage or consequences may result.

Instead of medications, I use compression, a lymph pump, electrolytes, hydration, activity, meditation and caffeine on a regular basis. I have to come off of the caffeine periodically to avoid developing a tolerance.

Though you ask a why not question, I have often wondered about the reverse question. Why do people who suffer ON medication or know they can only use it for a short time, or don't see improvement...stay on a medication?

I believe we are all doing what we need to have the best quality of life possible. For me, that means as little medication of any sort at all times for as long as possible.

[gertie]

I have tried several medications & the side effects were worse than another disease. The only thing I have found that helps at all is Neurontin for migraines & an occ 1/2 of lowest dose Ativan when I get the shakes & an Allegra if I get sinus inf.

[toddm1960]

I've tried two beta blockers, an alpha agonist, alpha blocker and a benzodiazapine. The alpha blocker and benzodiazapine didn't do anything, felt the same, no better or worse. The two beta blockers increased my already extreme exhaustion, so I was much worse on those. The alpha agonist increased my brain fog so bad I couldn't function at work. The only thing that works is sitting, reclinerville as it were...........

[flop]

Firewatcher,

Klonopin (clonazepam) is a benzodiazepine medication. They are good at helping you to relax, sleep and lessen the symptoms of anxiety (which can be caused by POTS itself, not anxiety!). However they are habit forming and many people do develop a tolerance to them. Discuss with your doctor whether an occasional small increase in dose os okay, or if you would be better trying to have periods without benzos to let your body clear itself. Some people take them durring the week but not a weekends for example.

Allegra (Fexofenadine). All the literature says that you shouldn't develop a tolerance or need higher doses of anti-histamines but I certainly do! Several years ago I managed fine on Fexofenadine 120mg once a day. 2 Years later I persuaded my GP to prescribe the angioedema / urticaria dose of 180mg daily.

Then I found that even that wasn't enough, my mouth and throat were so itchy all the time. Standard OTC anti-histamines worked but only for a couple of hours.

Eventually I saw an immunologist (allergy specialist) who has prescribed Fexofenadine 360mg twice a day (yes SIX times the usual prescription dose) - finally I have no more itching!

Re meds - stay on them or stop??

I have always assessed each drug as it was prescribed (only one new drug or dose change at once) and if it helped I stayed on it. After a couple of years I usually know if something is still helping or not. For example my beta-blocker if I forgot a dose I would feel dreadful so I knew it was helping. However I also knew I had to come off it to get my allergies treated so I switched to Ivabradine (UK only).

Fludrocortisone (florinef) helped initially but after 3 years the tablets changed to ones that needed to live in the fridge. I kept forgetting to take them and didn't really notice a change in symptoms. I asked my doctor and we agreed that I should stop taking them.

Slow sodium - this was a big help in getting my BP up when it was low (in combination with florinef and water). I was doing 24 hour urine sodium measurements to guide my dose and as I needed less sodium I switched from tablets to dietary salt (himalayan salt in my drinking water).

Midodrine just didn't do anything to help me - no effect at all, not even the tingly side-effects you are supposed to get. I was only prescribed 2.5mg three times a day. If I had my way I would have tried a larger dose before giving up on it but there was no point taking a 2.5mg tablet that did nothing to help me.

At the moment for POTS I am taking Ivabradine (essential, can't function without it) and Paroxetine (paxil). I'm not sure if the paroxetine still helps with my POTS but I suspect that if I were to stop taking it that I might get depressed (have been depressed previously). I will discuss this with my doctor again in another 6 months to see if they think I should try weaning off paroxetine.

Flop

[futurehope]

Klonopin was my favorite medicine. I felt great when on it. After about 4-6 months, I needed a higher dose. I decided to wean off: that was my choice. They are still in the house when I need them. I love them, but the effect is short-lived. I felt terrible for about 4 days while getting off them, though, even though they weren't "working" anymore.

As for other meds, I dislike the side effects more then I dislike the original problem, so I am drug-free for my POTS right now.

I do remain on meds for allergies, though I have to take breaks from my nasal spray or it quits working. I remain on meds for GERD and thyroid.

[firewatcher]

If it were not for the vicious nasty headache that the Klonopin was controlling, I'd come off of it. Every time I've attempted to come off, the headache comes back with a vengeance! Lyrica also works, but for not as long and the side effects are more numerous. I used to take Zyrtec, but developed tolerance, so I switched to Allegra. It may be happening again.

[Jordan]

I am on some meds but i have a metabolism problem which can cause me paralysis on certain drugs. I was only tested for one liver enzyme which I am missing so we don't know what would happen if I was on other meds.

[HoudiniCat]

I?m one of those who just hate, hate, hate any type of meds and always thought I could cure whatever was ailing me with natural remedies, diet, exercise, etc. When those didn?t work for my POTS, I had to start trying meds and found my best combo was Toprol and Klonopin. I used to drive my doc nuts because I would stop taking them too soon and not see much improvement in my symptoms but then again, there was no great improvement while taking them either. After about a year, I slowly switched from the meds to more of the natural remedies and that seemed to work for me. I also got the killer headache (among other nasty symptoms) when stopping the Klonopin and took some Exederine Migraine Formula to at least make them bearable.

[MomtoGiuliana]

I used to be on meds but improved to the point that the side effects tho minor are worse than the benefit. I maintain a prescription for a beta blocker which I do use occasionally if I have a flare up.

[Guest tearose]

firewatcher, do you know what triggers your headaches? Do you get them more in the morning?

I seem to trigger in the morning, if I get up too fast or go into lights before my bp is up.

[firewatcher]

firewatcher, do you know what triggers your headaches? Do you get them more in the morning?

I seem to trigger in the morning, if I get up too fast or go into lights before my bp is up.

No, I seem to have it all the time. Some days I wake up with it, some nights it wakes me. It can spike with activity, bending over, coughing, mental effort, and several other things. Lying down doesn't help either. It is worse when my BP is high, but I can still have it when it is low. It seems to be fairly constant.

[ramakentesh]

It may be of interest but the proband with NET deficiency herself is unmedicated.

[Guest tearose]

Where was the proband with the NET deficiency discovered? How are they managing?

[yogini]

As many doctors have said about POTS, none of the treatments currently are very effective save maybe for mestonin - because none of them are treating the actual primary cause(s) of the condition.

I dunno. I have read that beta blockers work for at least 1/2 of POTS patients. I have seen similar stats for SSRIs. But what does it mean to "work". There probably isn't any treatment to "fix" POTS the way Advil knocks out headaches. But there are lots of meds that help people function better.

I think that there are many different reasons people don't take meds. Some are scarred because they tried many meds that didn't work --and who can blame them! Others prefer the idea of supplements or more natural treatments. In my mind, I think of anything that I put in my body as the same. There is also a tradeoff with side effects and some people find it easier to live with the POTS symptoms than the side effects. Earlier on in my condition, my POTS symptoms were harder to tolerate and I needed more meds. Now I can live with my sypmtoms and am trying to wean off....though I would not hesitate to go back if things got worse. Another issue is availability - I think we sometimes have to be pushy with our docs to get the opportunity to try different things, which can be hard to do. If doctors were more receptive and better experienced/informed about POTS, we'd all be feeling better sooner.

I do think that it's important to evaluate each med differently rather than to think about meds as a whole....because each med is completely different. Even within beta blockers there are several and some are able to only tolerate one. Some are also easier to test out and have fewer side effects than others.

[ramakentesh]