peregrine

Interesting - I have bad heat intolerance too (ideal is about 65F, above 75F I start having trouble functioning). I do sweat - in fact I sweat too much (hyperhidrosis) in the normal spots; even if it's 70F out I have rivulets of sweat running down my chest. I guess the vasodilation is to blame in my case, since the sweating is if anything overly active!

I currently take 60mg 2-3x daily; I maxed out at 120mg 2-3x daily but started having serious speech problems and confusion, so we backed off. For me it mostly helps with my energy and general wellbeing, but it's hard to tell since the effect is pretty weak. Personally, I can forget to take it, or stop taking it for a day or two to experiment, and I don't have any issues if I do so, but probably worth checking.

Have had worsening SOB in the last few months, even with dropping the dose of propranolol. I mentioned it to my PCP today (in for a different issue, though asking for a refill for my albuterol) and she was shocked that I was put on it in the first place. She's switching me back to atenolol, so I'll need to call the neurologist (a pain as he's hard to get a hold of). Ugh. I'm pretty sure this is behind me almost passing out at PT yesterday too... (edited to add - my peak flow was 450, which is pretty good; the issue is breathing out slowly is tricky, so I can't get a full breath, etc - I can force out air, just not breathe normally.)

While at the physical therapist today (the one I see for pelvic floor issues, rather than the one who treats my joints), we did a round of fairly intense myofascial work on my abdomen. I was lying down with my head very slightly elevated (lower than my bed at home). The pain was pretty intense (8/10 or so) and I began blurring out and sweating heavily (but no nausea, surprisingly); she picked up on this and we stopped and I began feeling somewhat better, with none of my usual post-presyncope issues (severe fatigue, chills, and speech issues). I'm pretty certain I'd have actually passed out if she'd continued. Has something similar happened to anyone else? It seems weird for it to just be the pain (I've had pain that bad before, though this was a different type than my usual pain) - is there some chance she hit something triggery down there? Some it was likely due to breathing funny due to both the pain and the abdominal work. Anyone know about presyncope triggers with abdominal pressure?

Sue - I don't have Factor V but it runs in my partner's family (his dad and sister have it). The way I understand it is that you are generally heterozygous (one allele each of the bad and good versions, so to speak). Homozygous folks have issues so severe that you probably would have noticed it already (but it's worth making sure you're not homozygous). Advice if you are positive for Factor V is generally to take anticoagulants (warfarin or coumadin, etc), avoid sitting for long periods (uhh), avoid things that lead to more clotting (smoking, hormonal birth control, etc), etc. Given that your result was positive, you should probably consider bringing this up with your family doc and getting it retested through a genetics clinic, since it's a serious risk factor for Deep Vein Thrombosis and thus pulmonary embolisms, which are severely bad.

I'm actually the opposite - I am cruddy when it's a weekday and feel okay when it's the weekend. A lot of this is due to the fact that I am rarely alone during the weekends - partner or housemates are almost always around - and so I am surrounded by people who know me and my limits rather than by sometimes less careful coworkers. Plus, with the spaciness - I do a lot better when walking with someone, and that's only true on the weekends.

Most insurance will cover things like MRI if you have symptoms, so you should be able to argue for a full spinal MRI - just make sure they note that it's diagnostic rather than screening.

Same as puppy - swings and the tilt-a-whirl type rides (or even better, the Teacups at Disney Land) have always been my favorite things. I get motion sick about once a year, usually on really jerky bus rides.

The orthostatic criteria thing is definitely a big one, and I'm glad they mention it! For the standing itself - I've certainly noticed that my own standing results are less dramatic than the TTT results (though still an increase over 30bpm before beta blockers), and many folks have pointed out that it more closely mimics what happens in real life when someone stands.

Hunh - yeah, I noticed that the immediate release was kind of a yoyo - hard to tell if the fatigue post-high is due to the post-stimulant slump or due to me returning to my normal level of energy. I might talk with the neurologist about Concerta (or some other extended-release form of Ritalin) if trying 10mg twice daily doesn't solve it.

Thanks for the info on Adderall! The crash doesn't appear to be due to the Ritalin - the exhaustion and speech issues while driving were while I was still on the "high" from the Ritalin. How does one test for adrenal exhaustion? I don't know anything about it, though I know folks have talked about it here. edit - ah, adrenal exhaustion is the alternative/holistic medicine concept, tested via salivary cortisol, etc. Hunh.

Folks here might remember that my biggest problem in terms of day-to-day life is spaciness, along with brain fog and some presyncope, and that the spaciness keeps me from driving. My new neurologist suggested that we try ritalin (methylphenidate, a stimulant used to treat ADHD, apparently also FDA-approved for POTS!), so I've started taking 5mg twice a day. The upside is that my seated spaciness is pretty much gone when I'm in the ritalin "high" (a 2-hour period following taking it, followed by a 2-hour slump). I'm also a lot less tired during that period - I can sit up straight at my desk because I have energy! and much of the brainfog is gone - I can think coherently about my tasks for the day, I can read scientific papers (which is a lot of what I try to do many days), etc. Since we were already taking the cat to the cardiologist for a pre-dental checkup (he has an overactive vagal response! this is kind of hilarious), we had some extra time with the Zipcar. I tried driving (with my partner in the passenger seat) - first around the parking lot, then around the block, and eventually on regular streets - all of this while the ritalin was at its peak efficacy. It went great for the first ~30 minutes, but after that I started having more and more trouble talking, began spacing again (so we headed back to the parking lot, of course), and by the time we got out of the car I was exhausted and could barely walk or talk. My blood pressure (via wrist monitor) was fine this entire time - it actually seems normal when I am feeling spacey. These symptoms are very similar to my presyncope, only presyncope for me also includes the cold sweats and nausea, and I got neither (maybe because I was sitting down?). Yesterday when I got presyncope I also had a normal BP - is this due to systematic BP having ~nothing to do with cerebral blood flow in my case? So... is this sympathetic or adrenal exhaustion? I recovered after resting (sitting upright) for about 30 minutes and eating something, and never noticed any BP or HR change - just the speech issues and fatigue. It looks like I can drive one-way trips - maybe spell someone else - but with this set of symptoms I can't make the return trip. I'm hypothesizing that it's something like this: 1 - Some stressor, either upright position or driving, leads to spaciness. 2 - Spaciness is worsened (caused?) by sympathetic overdrive. 3 - Spaciness worsens and proceeds to presyncope (or exhaustion/speech issues) due to adrenal exhaustion. 4 - I eventually collapse until I restore adrenal hormone levels? Does this make sense? How would you distinguish adrenal exhaustion/sympathetic overdrive from other things? Am I totally off my rocker here? Would like to try clonidine, since the ritalin hasn't done anything for the standing spaciness. Hopefully I can convince my neurologist to give it a shot in a few weeks. (thanks! sorry for the info dump, just lots of new data and I'm confused)

I get mine from BrightLife Direct; my partner's father gets his from Ames Walker. For fun I wear toe socks (so I can wear big-toe-loop sandals; I have compression stockings with open toes) over the stockings (also protects them from my shoes/the floor). You can get standard stockings and then find fun socks online that she could put over them, maybe?

Probably hyperPOTS (no bloodwork done to confirm), but might be still useful. I don't drive - haven't been able to for over a year now due to spaciness. We'll see if the Ritalin (methylphenidate) I started today helps with that. I do work, but I'm a research fellow (grad student), so my work is incredibly flexible both in terms of hours and when/where I get things done, so it's not necessarily a good example :^)

I take 60mg 3x daily - started at 30mg 3x daily for 3 weeks, then up to 60mg. On the new neurologist's suggestion, I upped it to 90mg 3x daily (result - no increase in beneficial effect, maybe increased spaciness?) and then 120mg 3x/day (at which point I stopped being able to speak). Now back to 60mg. I'm not as clear-cut on its effects as I'd like to be - it does seem to alleviate fatigue somewhat - but other than the dose-dependent speech issues I have no side effects, so... *shrug*

I'm a mixed pooling-hyper-whathaveyou type, and have been taking pyridostigmine (Mestinon) for about 4 months now. It's hard to say that it's had much effect, honestly - if anything I think I'm maybe a little less fatigued. But no obvious effects on blood pressure, pulse, presyncope, or the dreaded spaciness. HyperPOTS8 - what's Dr. Sandroni's logic? I am very curious to know!

AllAboutPeace - if it helps, I grew up with a chronically ill mom who couldn't do much at home besides lie on the couch and talk or read or do puzzles (recurrent cancer plus chemo plus illnesses). In some ways, although I wish she hadn't been so tired all the time, I think it made me more ready to be an independent adult and (later) to be more accepting of my own chronic illnesses. It was tough watching her feel cruddy, but I don't recall ever feeling like she was letting me down or wishing that she could do more - it just meant I learned to be independent a little earlier than most folks my age. It sounds like most folks here who have kids (especially kids without dysautonomia, unfortunately) do worry (of course!) about the impact on their kids, and that many of those kids cope pretty well with having a chronically ill parent. (I also saw a therapist of my own for most of my childhood, which helped a ton; if it's affordable for folks here, it can help some kids adjust) Tricky stuff. I'm glad to hear other folks' daily schedules and coping strategies!

I'm lucky in several ways - I have a partner and housemates who help out on days that I can't do much, and because I got diagnosed quickly I got treatment quickly. My main issues right now are transient presyncope, brain fog (which interferes mostly with work), and severe spaciness; I have fatigue almost constantly, but not to the same degree as other folks here seem to have, which I know is a really serious limiting factor for some, and my nausea is less bad than other folks' as well (and headaches very rare).

It does depend on the day somewhat for me, but this is a decent average approximation. I wake up around 10am and spend ~45 minutes getting ready for work (eat breakfast, get dressed, put on compression stockings, make a quick lunch). I head out the door, put in one earphone (reduces the spaciness somewhat if I only use one), and begin walking to work. It's a 1.75-mile walk (all downhill, thankfully). Lots of energy goes into making sure I don't trip on things and making sure I watch for cars, since my spaciness is very bad while walking. I arrive at work, settle down, and spend ~30 minutes checking email and doing other mindless things while I recover from my walk. Depending on the day I do various things (experiments, reading papers, going to seminars, meeting to discuss things). I also spend a lot of that time not doing much mentally (my mental stamina is limited and I get brainfoggy ~all the time). Sometime in there I eat lunch (usually ~1pm), and an afternoon snack or two. Around 6-7pm I leave my office and walk about 2 minutes to the bus. I take the bus for about 20 minutes (uphill), then get off and walk 10 minutes back to my house, same spaciness issues as before. I spend about an hour relaxing (it's now 7:30ish) and begin discussing dinner with my partner; we eventually finish cooking dinner (with me on my stool at the stove) around 10pm. I eat, do my physical therapy exercises, relax or work a bit more, then shower (sitting!) and go to bed around midnight or 1am.

I didn't check EDS, since my condition (joint hypermobility syndrome) is - depending who you ask - either indistinguishable from EDS or is a different thing entirely. I haven't been formally diagnosed with IBS, but it seems very likely that I have it given symptoms (I just haven't gone for a diagnosis because treating it at home with a decently fiberful diet and the other at-home things I do for all of my chronic conditions helps).

Yeah, Valsalva is not so good. One of the reasons I have trouble singing these days - the breath control required sets me off something awful.

Tinks - I can't give you medical advice per se, but many folks here on the forum take propranolol either 2x or 3x per day (I take it morning and evening, and make sure to take it in the morning about half an hour before I leave so it takes effect). The main metabolite of propranolol has a half-life around 6 hours but does continue working for longer than that, so twice a day makes sense. My cardiac electrophysiologist said that I can also take it as needed, which I did once when I had a really bad adrenaline surge. Just watch out for lightheadedness, which all beta blockers can worsen because they do lower your blood pressure.

Well, no serious repeats of the speech issues - at least nothing more than what stress, etc usually causes. I'm similar to Kelly - stressed or upright position is a great (well, not so great!) trigger for speech issues. Back to 60mg 3x now, which worked well today.

Mornings bad from waking until about 1-2 hours later. Midday is okay. 5-7pm I am in total brainfog spacey land, not a good time. 7pm to sleeptime (somewhere around 1am) is good. (additionally, any time I walk for more than ~10 minutes I am a wreck for ~30 minutes after)

Surprisingly I got his office and he was actually in - amazing! He said to drop to 60mg 3x/day, since the 90mg seemed to have either no or a mild negative effect and the 120 wasn't helping (and caused the speech issues).