ehl5

Since I have developed dysautonomia, I have been unable to tolerate SSRIS and SNRI's. I take Wellbutrin now but can only take 200mg - any more and I start developing serious side effects. A new psychopharmocologist has suggested I try Lamictal - she said it is not usually known to cause hypotension and can be helpful in PTSD patients.

Does anybody have any experience with Lamictal and dysautonomia? Doctorguest, do you have anything to add?

Lamictal is an anticonvulsant. I took it for a brief period of time when I was having intense seizures and it made me unable to concentrate well with horrid mood swings. But then again, I didn't tolerate any anti convulsant I tried very well.

I used Melatonin for a while to regulate my sleep cycles and it worked pretty well for me. I'm not using it at the moment because I ran out and have been too lazy to get more. One POTS side effect I did notice was the occasional tachycardia associated with it, but that's it. None of the other crazy side effects.

Hi,

I'm going to have some more testing done and was told that if I wanted to be off Fludrocortisone then I would need to half the dose for 2 weeks then stop it completely at least 2 weeks before the testing. Fludrocortisone takes a long time to stop having an effect on your body. You also shouldn't stop taking any type of steroid suddenly. Your adrenal glands can get used to having extra steroid in your body and stop producing as much of your natural steroids, if you then stop without weaning off your body won't have enough steroid and can cause all sorts of problems including very very low BP.

I don't know how long it takes to get Paroxetine (paxil) out of your system for testing but it is a drug that is known to have a withdrawal syndrome. The horrible symptoms you had were from stopping it suddenly. If you decide to stop it again in the future I would talk to your doctor and pharmacist about the best way of slowly reducing the dose to minimize the withdrawal symptoms.

Does your doctor know that you stopped the meds just 4 days before the tilt? It may change how he interprets your results.

Good luck,

Flop

No one told me exactly how to withdraw from these things. A bit irresponsible on their part but oh well. I knew Paxil had to be tapered (which I did and I still had horrid symptoms), but I didn't know that about Florinef. I didn't withdraw completely until as close to test time as possible because a) I had never done it before and my test was run the week before my final exams and I didn't want any adverse effects on my work. Even if I had followed procedure I doubt I would've procured a diagnosis of anything other than "mild POTS" because I know I'm not the most severe case out there. I still managed to land the diagnosis though. I'll bring it up to him at my next appointment though. Thanks for letting me know, next time withdrawl is involved in something I'll definitely be more assertive.

how long were you off of your meds for pre-testing? both have relatively long half-lives & thus need to be out of your system for quite awhile to get accurate test results.

also, just as an FYI, florinef is used by some docs for tachycardia without low BP b/c of the theory that tachycardia may be preventing a drop in BP.

i'm glad that the plan is only to make one change at a time so that you'll have a better idea of what may be helping/ hurting. atenolol can drop BP for some people so that some do better on it WITH another med to support BP, i.e. florinef, midodrine, etc.

melissa

I tapered the paxil down and was completely off of it for about 4 days or so. Those were 4 days I'd rather not relive. I was off the Florinef for about 4 days... I don't know if that was long enough.

Even though I won't be taking the Florinef for a while, I'll still have a supply so if I notice my BP getting too low then I have something to fall back on. But thanks for the heads up !

Welcome! Sorry about your POTS diagnosis, hopefully you can find a treatment route that works for you.

A non-medication route you can try is wearing compression tights. I started wearing them last August and they've been a big help. I also use a cane whenever I need a little extra thing to lean on. I have one of the collapseable variety that I just shove in my purse when I'm not using it.

Were you taking florinef or other meds when you had the tilt table test? If so, that would have skewed your results....(your results might have been stronger without meds). If that is the case, the meds you are taking may be working and you might want to re-consider going off of them. I take atenolol. I do find some side effects - fatigue, weight gain, exercise intolerance. But for me well worth it.

I was sans meds when I took the test... it was a beast because I also had to go off the Paxil as well. I have to admit I was having a good day when I was tested. If it had been on a heavily symptomatic day it probably would've been worse.

(note: some of this is excepted from my medical blog... I'm too lazy to retype everything)

So I went into the doc's office today to discuss my tilt table results. I got a copy of the results (**** yeah! Concrete proof!) and under the section where it summarizes this called "Impression" it says:

"This is an abnormal study. This is borderline evidence for postural orthostatic tachycardia syndrome. This was no orthostatic hypotension. This is borderline post ganglionic sympathetic sudomotor dysfunction as well.

These findings may be seen in patients with POTS of relatively mild severity."

So what's the solution? Atenolol.

I'm also going off the Florinef because the test doesn't show my blood pressure really dipping and the doctor made a remark about how my blood pressure is actually a little high for a woman my age. The plan is to stop with the Florinef for a week to give my body and chance to cool off and then start with the Atenolol.

I could also be going off the Paxil CR because he doesn't agree with me being on it indefinitely and neither do I but we both agree that this isn't the time to try and withdraw.

Has anyone here been on Atenolol? From what I read (and talked to the doc and the pharmacist) said that this has very few side effects and drug interactions. What has everyone else's experience been with this?

I was wondering just out of curiosity if anyone on this board is from Pittsburgh and if so what doctor do you see? Mine's alright, I see Dr. Muldoon at UPMC General Internal Medicine, I was just curious as to what everyone else does. He didn't really know all that much about POTS when I first went to him (but he'd heard of it, which is a step up from most docs) but he took the time to educate himself on the topic, which to me shows character.

Ugh, I hate doctors. Best of luck to you in fighting this!

I've never had a passing out or sick dream... although I think a dreamt once that I was watching myself have a seizure. Nontheless my dreams are strange... last night it was my brother and I trying to plan a cross country road trip from LA to North Carolina and the map kept switching states around on us... at one point Oklahoma was "Indian Territory" which is what I think it used to be called.

If you want to switch to another SSRI, I highly recommend a controlled release form. That way you don't get all the medicine hitting you at once. I'm on Paxil CR and like Mrs. Burschman said, it's VERY hard to quit. I've run out before (during finals week no less) and didn't sleep for four days (which considering the timing wasn't the worst thing in the world) and felt so tightly wound and tachycardic. It was miserable. However, I've had very little in the way of side effects from it (as opposed to regular Paxil, which was pretty awful in that department) and I've been on it for about 6 years.

I wear them when I'm out and about... if they start annoying me when I've come home for the day, then they go.

Ugh, I hate docs sometimes. Best of luck to you in finding a better one!

That option really wasn't presented to me when I was going through seizurehell. I was in an epilepsy monitoring unit and they found that it's not brain related, so they assumed that it was anxiety related. It may be related to the POTS, I'm just not sure.

I've been on Florinef now for about 5 years. Granted, I don't really have any of the other conditions you have, but the medicine should be watched pretty closely since its a steroid. I haven't experienced any real bad side effects.

Best of luck!

Hi there,

Have you had any Tilt Table Tests? I have seizures with NCS. Neurocardiogenic syncope. Lots of people here have NCS and POTS.

It seems few (here) with NCS have seizures, but nevertheless it is known to occur.

I've gone through tilt-table testing twice: January 2003 and December 2007. The second one was to confirm the diagnosis because when I moved to Pittsburgh I didn't really have the record of the first diagnosis (mistake I'll never make again).

Welcome aboard. Just curious......what kind of seizure disorder is it that may or may not be related to the POTS?

mary

The kind that might be anxiety based... I got in control of that and I haven't had a seizure in 10 months.

Hi, I'm new to this board, but not necessarily to POTS.

I originally got diagnosed with that in 2003, but when I moved to Pittsburgh and sought treatment here I had to get re-diagnosed which happened a few weeks ago. I also have hypoglycemia and a seizure disorder which may or may not be POTS related. I use 30-40 compression tights and a cane from time to time.

The doctor at the lab I was in (but not the doctor I see) mentioned something about giving me a low dose beta blocker. I've never been on one of these before, but I've read they either work really well or are an absolute horror so I guess we'll see.

Anyhow, I look forward to meeting you all