peregrine

The only antidepressant that I've seen have an effect on POTS was Cymbalta - it triggered the POTS (or at least the high blood pressure/hyperish half of it) and made the spaciness worse. Too bad, since it did great things for my joints! Prozac (fluoxetine) hasn't had any impact that I can tell, but I'm only on 5mg/day. Neither Cymbalta or Prozac was prescribed for POTS.

More a higher brain issue - I also had trouble expressing myself in, e.g., fingerspelling. If I concentrate I can talk somewhat more clearly, but it takes a lot of mental energy to do so. There's probably also some muscle weakness, but most of it seems to be higher brain function. Interesting - it doesn't cross the blood-brain barrier? I wonder why my doctor prescribed it for spaciness, then, since we're 99% sure that's CNS in origin? Hunh. Will call them today. I definitely had cold sweats both times, but didn't notice the others.

In a quest to look more at the spaciness issue, my new neurologist suggested I try upping the dose of my pyridostigmine from 60mg 3x/day to 120mg 3x/day (via 90mg). It seemed like the 90mg dose was making the spaciness slightly worse, but then it went back to normal. Three weeks after starting the 90, I tried 120mg - partially to see if it would worsen the spaciness (conclusion: unsure) and partly to see if it would have any other greater effect (conclusion: no). Yesterday I had a terrible headache, plus a brief adrenaline surge-type-thing, and after a 2-hour car ride I started having more severe speech trouble. I get some speech issues with presyncope, but this was no presyncope - just weirdly wiggly vision and speech issues and confusion. I got overwhelmed by trying to talk when other people did. Thankfully my partner was there and led me around the grocery store and his parents were surprisingly able to cope. (his dad Doesn't Understand my joint problems, but he understands pooling!) I figured I'd sleep it off - it improved a bit with lying down - and seemed fine this morning. Except not... I took my usual morning meds (including 120mg of the pyridostigmine), went off to a meeting, and found that my vision was squiggly a bit and that I was again having a great deal of difficulty speaking. Fortunately I was able to present the thing I needed to present at the meeting - hooray for having it written out in notes in advance, meaning I could largely read it off the screen, which is easier for me when speech is a problem! - but I could barely comment on things other folks were presenting. I spent a lot of the meeting using body language and grunts to indicate agreement - frustrating. I came home (thankfully the committee chair was able to give me a ride home!), napped 2.5 hours, and felt somewhat better, though still messy. Again, no presyncope. Just for fun, I looked at the side effects for pyridostigmine this evening, and under the "call your doctor immediately" heading there was the side effect "slurred speech" (and confusion too, of course). Lovely! I had this same effect on tricyclic antidepressants (imipramine). I don't need *more* things causing speech issues! I'm seeing the neurologist next week - should I call tomorrow morning and ask what to do? Has anyone else had this happen to them with pyridostigmine, and if so, did it resolve? Good thing the med hasn't been that effective...

Winter makes me stiffer and I have more pain (it's a relatively cool but not cold one - 40s to 50s, but very humid all the time), but my POTS issues are way better - the spaciness is still there, but less presyncope etc. Looking forward to it!

Just to add my $0.02 - I have a small folding stool that I got from REI that lives in my backpack. It's useful for museums, bus stops, farmer's market, etc - but not for waiting in line, because I have to keep getting up to move it. A taller stool might help with that somewhat, but for lines a wheelchair or walker does seem like the ideal (because it has wheels!) solution.

Atenolol made me tired, but propranolol hasn't - it does sound like it really depends on the person and their individual reaction to different meds. (no PVCs above the usual for me)

Libby - is that withdrawal physical or also/instead psychological? I didn't have any serious craving for gluten while on my trial (someone put fresh baked cookies in front of me and I briefly went "if only" and then stopped caring a second later), but if it's a physical issue, I could see the problem. The weeklong trial was suggested by a nutritionist I saw in the past.

Definitely look at other types of dysautonomia as well - POTS is what many (perhaps even most?) folks on this board have, but there are other types of dysautonomia that can cause the same other symptoms without a strong tachycardia component. Might be worth asking your primary care doc to do a "poor man's" tilt table test - measure BP and HR while lying down, on standing up, and then every minute or so thereafter for 10 minutes. You might have orthostatic hypotension, for example, or something else in the orthostatic intolerance area.

I tried GF for a week and felt worse; I ate a lot of gluten the day after (intentional) and felt better. Who knows? The one thing to watch out for with Thai, Japanese, Chinese, etc food - which often look GF - is that soy sauce traditionally has wheat in it, and many of these can incorporate soy sauce as an ingredient. Gluten free soy sauce does exist, but you have to hunt to find it, and most restaurants just use the standard (wheaty) stuff.

Glad to hear many folks have had positive experiences with them, even if I haven't! NMPotsie, your explanation about the peeing time makes a lot of sense - makes me think I may want to wear it flying and during road trips maybe? Does me not having much effect on POTS symptoms (minus the GI increase in motility) imply that I don't pool much in my abdomen?

I don't have one (though I do have a wallet card) - if I start having more issues (such as actual syncope or presyncope I can't treat on my own) I will probably get one. My instinct would be to probably just put "dysautonomia" or "autonomic nervous system dysfunction," my medical allergies, and "see wallet card" on it. The rest of my medical history (although really important for an ER doc to see, especially my medications) changes more often than I'd want for something engraved and won't fit regardless, but is also less immediately critical for someone like an EMT to read. I do like the idea of "postural tachycardia relieved with X and Y" - that gives them a brief starting point (though I would put it on the wallet card for more space).

I've had to tweak the propranolol a lot - 30mg 2x daily ended up being too much (dyspnea and bradycardia), so I went down to 15mg twice daily and that seems fine. I do get a little less HR control with it than with 20 or 30, but my breathing's a lot better and my resting heart rate is back to 60.

I'm in my mid-to-late 20s, so according to that calculator I should be in the 140-160 range, which I was able to get to in the pre-POTS days. After the POTS started, without beta blockers I was more at 170-180, and with them I'm in the 100-120 range during exercise.

Kat - how's your heart rate after standing up? And your blood pressure? The symptoms you describe could also be consistent with orthostatic hypotension (and dysautonomia in general), but POTS specifically requires an elevated heart rate on standing. You'll find that many - probably most - of us here have comorbid (coexisting) conditions - for example, I have joint hypermobility syndrome and fibromyalgia. Welcome and hope you find some good tips here! Take a look at the rest of the board for various conversations about sleep, eating, exercise, and more.

Since going onto atenolol and then propranolol this has been my issue too. On the recumbant bike or swimming I can't get above 120 even with 30 minutes of sustained exercise. I can get up to 150 if I am climbing a very steep hill in the neighborhood and not taking it slow, but that's about it. Standing pulse is now around 90-100, which is an improvement, but the rest seems weird.

Gah - glad to know I'm not the only "not deconditioned, no really" person with POTS out there. My Valsalva had a narrowed pulse pressure, which the ANS neurologist said could be due to one of SNS failure (ruled out by the rest of the Valsalva, though the TTT indicated some dysregulation), dehydration (was drinking 2-3L of water/day and 6g of salt then), or deconditioning (I had been walking 3-6 miles/day at speed at that point). Ruling out the SNS and dehydration, she assumed it was deconditioning despite the exercise. I did have a brief period of deconditioning right when POTS started (1 week road trip), but at the point of the TTT I was doing okay. Grump - I'm tired of being told that that's the explanation!

(I'm using the CDC's diagnostic criteria, since I'm not as familiar with CFS as I am with fibro, POTS, EDS, etc) The CDC criteria ask for severe fatigue that causes a substantial limitation in activities. The other criteria they ask for are four or more of the following: impaired memory/concentration; post-exertional malaise; unrefreshing sleep; muscle pain; joint pain (multiple joints); headaches (new/worse); sore throat (frequent/recurring); tender lymph nodes. Many of these (brain fog, post-exertional malaise, sleep issues, pain, headaches) are pretty common in folks with dysautonomia, but sore throat and tender lymph nodes aren't something that is brought up here often. Like yogini said, many folks with CFS (though not all) have low grade fever - my sister did.

As far as I can tell, one of the big reasons is that (at least according to the CDC's diagnostic criteria for CFS) the fatigue has to be "not a result of other medical conditions." Since many types of dysautonomia cause fatigue (which makes sense, even if you ignore the fact that most of us have fatigue), I would assume that this excludes most of us from the diagnosis of CFS unless the CFS was diagnosed before the dysautonomia showed up, or if the dysautonomia causes no fatigue whatsoever. You could totally argue that CFS/dysautonomia are wildly overlapping anyways, although they're not 100% overlapping (example: I have dysautonomia but not CFS; my sister has CFS but definitely does not have dysautonomia).

Your description of lightheadedness as "looking through a video camera when I am walking or driving" reminds me of what I describe as spaciness (or depersonalization, but I try to avoid using that term since it's dysautonomia-related, not psychiatric in origin). I feel very unconnected to my body and my surroundings - judging distance, moving around obstacles, etc are all very hard. I have also given up driving as a result of this. Does this sound familiar or similar to you? Mmm, also (edited to add) - I can be spacey for very long periods before I get presyncope, so for me it's not really lightheadedness or presyncope, more just a feeling of disconnection.

Many folks here have noticed a definite connection to their cycles - the fluctuating hormone levels can play a big role in heart rate, etc for many folks. I have a friend who doesn't have POTS, but does have sinus tachycardia and PVCs and only gets them during certain times of the month. Definitely worth seeing someone if you can find a good doc, just to get things checked out. Good luck!

This was the Spanx item I wore: http://www.amazon.com/Spanx-Higher-Power-Brief-234S/dp/B003F5K2V4 I wore it over a pair of panties so I could wear it a few days in a row. Pain to use the restroom in, though! I wouldn't recommend it for anyone with joint issues in their hands or wrists.

Mmm, sorry if that was unclear - I get speech issues with presyncope and for several hours afterwards. I've never noticed them in conjunction with the adrenaline surge-like thing I described here - the surge-like thing had none of my typical presyncope issues (nausea, sudden severe sweating above normally high sweat, tunnel vision/greyouts), but I still couldn't keep standing because I suddenly didn't have the strength to do so because I could barely breathe.

I wear stockings too, and they help both winter and summer. Won't be abandoning them any time soon :^) I didn't find any issue with nausea with the binder, and I do have issues with nausea - maybe because it was consistent pressure rather than something more pointed. I don't really have bloating, though.

They didn't have any effect on the spaciness that I can tell - calcium channel blockers did worsen it slightly, though. I've been on atenolol (max dose 25mg daily) and propranolol (max dose 30mg twice daily, but I'm now on 15mg twice daily because of bradycardia and shortness of breath). Higher doses of pyridostigmine (90mg three times daily instead of 60mg) seems to aggravate it as well.

Now that I'm well enough to sit and look at my testing results without falling over... my Valsalva sounds different from you guys. "Borderline normal BP with reduction in pulse pressure at 50%. Normal HR responses to Valsalva maneuver." Basically if you look at the chart, it looks like the pulse pressure in my Phase II (the second half of the part where you're blowing hard, after the BP rises) is really narrow compared to the rest of my BP during the test. My doctor said there were three possible reasons for the decreased pulse pressure: deconditioning, dehydration, or SNS failure, but that my SNS was fine because the BP rose during Phase II and it doesn't do that in folks with SNS failure. It's unclear why else - it could be deconditioning, but at that point I walked 2-4 miles a day; it could be dehydration, but I was drinking 2-3L a day and eating salt too. Unclear. FWIW, Naomi, my BP hasn't gone down much since starting beta blockers - though I don't use a BP cuff, this is just doctor's office readings, it seems to be the same. The only major physiological change has been a lower HR - it only gets up to 150 when I'm exercising *really* hard. Mmm, forgot to add - I was diagnosed with neuropathy due to borderline abnormal QSART responses, but haven't had a biopsy.