Heiferly

As a patient, I hate saying this because I think (some) doctors tend to take it to an extreme and discount patient experience entirely. But as a person who tends to have a rational mind, I thought I would point out that there is a difference between "signs" and "symptoms" per the medical field. Begrudgingly, I have realized that sometimes my experience of symptoms doesn't correlate neatly with the signs. For example, sometimes I feel as though I am experiencing tachycardia while lying down; the sensation, to the best of my perception, is identical to that which I experience when I go tachy standing still for too long. However, using a blood pressure cuff and continuous heart rate monitor, I have found that what is actually occurring is a widening of my pulse pressure to 50+, whilst my heart rate is stable at a good resting heart rate. Both pounding sensations were interpreted (erroneously) by my brain to be the identical phenomenon. However, once I learned more about stroke volume, pulse pressure, etc., my mind had a different filter through which to perceive the sensation I was having in bed, and now I do perceive the sensation as unique from tachycardia. Is this a trick of the mind, or just learning finer differentiations? What if an explanation for the sensation that were untrue had been put into my head? Wouldn't I have accepted that just as readily, presuming it were as plausible? I guess what I am saying is that there is probably a margin of error in our responses here because some of the questions ask us to infer which signs of POTS we have from which symptoms we have. As many responses state or imply, actual testing or medical screening for hypovolemia, EDS, Raynaud's phenomenon, etc. has not been performed. I think perhaps one of the most fascinating conclusions you can draw from your questionnaire is that despite having symptoms of these diagnoses, POTS patients are routinely bypassed when it comes to actually being tested/diagnosed for these conditions. One thing that you didn't ask, which I would like to see people answer, is how many people have had one (or more) of their doctors give them a classification for their POTS. My doc never even mentioned the different types of POTS to me, and I honestly don't even know if he's aware of them.

I have them infrequently with topamax 100 mg 3x daily. Prior to that, they were frequent. For the ones I have, Maxalt usually works. I had my first migraine ever the day of my POTS onset, and have had them ever since. You can't really ask for a stronger correlation than that. I get facial numbness with mine, to where it feels like I've had shots at the dentist, but no droop. I've had ptosis in the past, and an opthamologist thought it was migraine related, but I'm skeptical about that due to the timing of it. I think it's unlikely that I have hemiplegic migraines.

I would put a phone call into the Dr's office prior to that appointment and report the lows you are experiencing when lying down. When I was on metoprolol, I was told I was not allowed to take my next dose if my HR was below a certain point. (60, if I remember correctly?) I got this same precaution from both the hospital and the pharmacist; I was also given limits on how low my BP was allowed to be before I wasn't allowed to take it. I'm obviously not a doctor, so I don't know if this holds true for everyone or every beta blocker, but I think it would definitely warrant a call to your doc just to be sure.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes, I can notice the change in color when they fill with blood, but usually I avoid standing very long these days anyway because I can't tolerate it. 2. Have you ever been diagnosed with EDS or suspect that you may have it? No, I'm fairly sure I don't. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? I'm usually in good shape lying down. Occasionally if my BP & HR are running very low, I will be feeling weak/run-down/nauseated/lightheaded regardless of position, but I don't have this problem much now that I'm under better control with medications. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? I have flushing, but I don't think I generally fit the bill for Hyperadrenergic POTS. I haven't had catecholemines tested or anything, though. 5. Have you ever been informed by a doctor that you have low blood volume? No. I am on fludrocortisone 2x daily, with accompanying salt/fluid loading ... which may imply they are treating for hypovolemia? But I think they are most likely following the "drugs usually tossed at POTS" protocol, rather than any particular knowledge of what MY body is doing. (Sigh. I suppose this shows my slipping faith in my docs.) 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Had endoscopy/colonoscopy/upper-GI series years ago; diagnosed with GERD, IBS, some spasms in the small intestine. This was all years before onset of POTS. Was able to cope without medication for a number of years, but POTS made it worse, so now frequently need medication to manage it. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? No. My hands are quite frequently icy cold even when the rest of me is warm, but it doesn't seem to be vasoconstriction and it's been that way as long as I can remember, predating POTS. 8. Did your POTS arrive suddenly? I know the exact date that it started. I felt perfectly fine the day before that. VERY sudden. 9. Is your skin pale? Always has been; people often joke if it were any paler I'd be see-through. I don't really sit out in the sun much though. 10. Please the top 6 worst symptoms that you experience with POTS: -excessive sleepiness and fatigue (confounding variable: narcolepsy in addition to POTS) -orthostatic intolerance (tachycardia, lightheadedness, nausea upon standing still or sometimes even sitting upright for long periods) -syncope, sometimes w/ convulsions -brain fog & memory problems (confounding variable: head injury secondary to a syncope caused problems with area of brain for short term memory/auditory memory) -skin pain (prickly burning) -GI issues

I can't stand to have anything touching my skin at all when I get the prickle burn in my skin, so I haven't tried a cooling vest. As a side-note, amitriptyline isn't an MAOI ... I think it's a tricyclic antidepressant. I didn't know it could help for neuropathy. Have you tried it? Did it work?

I take trazodone at bedtime because I was thrashing my feet like crazy at night and actually kicked a hole through our fitted sheet. (Tearing up the good high tc Egyptian cotton sheets was the last straw, so my sympathetic GP suggested trying the trazadone and it worked perfectly--the kicking stopped the first night I took it and hasn't returned.) I also take promethazine every 6 hours (including overnight, 24-hour dosing schedule) for nausea, which probably has a synergistic effect with the trazodone in promoting drowsiness. Now that I just got diagnosed with narcolepsy, I'm not sure if the sleep neuro will want to change my bedtime meds, but for now, that's what works for me. I do have some awakenings from vivid dreams occasionally, but not as often as before I started the trazadone. And occasionally I wake with sleep paralysis, but I guess that's a separate issue. I definitely have NO problem napping during the day--chalk that up to the narcolepsy I suppose. I drift off frequently whenever I'm only passively engaged in something (watching TV, reading, etc.) I did notice I wasn't drifting off as much throughout the day like normal while on vacation; I was much more hypervigilant in a foreign environment and that seemed to keep me awake a lot more.

I started noticing word recall, memory problems, speech dysfluencies, and brain fog as soon as I started in with the POTS. It seemed to worsen over time and it dramatically worsened after I had a syncopal episode where I got a concussion from hitting my head on cement. It was only then that the docs decided to do neurocog testing, and results were found that seem to indicate I have some focal damage from that concussion. It was remarked that I had some attentional problems that might be contributing to my memory issues--possibly the brain fog? I wish I had a better baseline that he could have gone from to see what had actually changed; I think much of the POTSy stuff was overlooked because the changes were minor and thus my scores still fell "within normal limits." They've recommended retesting in two years. I guess I will know then if it is consistent or worsening.

I don't think I ever feel normal anymore either, although it's getting to be long enough that I've been sick that it almost seems surreal that I ever used to have so much energy and be such an over-achiever in school and work and my social life. It's hard to reconcile those memories of myself with the person I am today.

I have had episodes of sleep paralysis as long as I can remember. I also had extremely vivid dreams as a child--one which I had repeatedly throughout childhood which I think was a hypnagogic hallucination, but it's hard to be sure this long after the fact. The sleep paralysis I'm positive about, though. It got more and more frequent and peaked during adolescence and is now less frequent. It was extremely frightening to me as a child because I had weird sensations during it like the feeling that I was being rapidly pulled through space and hearing a whooshing sound. (I later learned I was just hearing my own blood flow in my ears during these episodes.) But as a child, your imagination runs wild during such a frightening experience when you are awake but your body stays "asleep" and paralyzed, and you attribute all sorts of frightening, supernatural ideas to it. Thankfully when I got older a doctor eventually told me that what I was experiencing was something called sleep paralysis and it was entirely harmless, but for some reason no one thought to check me for narcolepsy at that time. :-/ There is only one time for sure that I can think of that autonomic symptoms other than fainting brought on the cataplexy. I was walking up a flight of stairs and started going very tachy and light headed and I remember thinking that I should sit down before it got worse so I wouldn't faint and the next thing I knew I collapsed and was paralyzed; it was very confusing at the time, because I knew I hadn't actually fainted. I guess you could say OI symptoms triggered that one. Another one came on under weird circumstances in the middle of the night, and I'm not sure what triggered it. I woke up with the thought that I was WAY overheated. MAJOR hot flash. I got up out of bed, and I'm a little fuzzy on the details, but I *think* I fainted briefly before the cataplexy. It's hard for me to fully grasp that one because I wasn't fully awake, since whatever was going on pulled me out of a dead sleep. I have also had at least one incident where the cataplexy did not affect my whole body. One day I was standing toward the edge of my porch, getting ready to leave my house, and my legs just suddenly went out on me. I ended up going head first down the cement steps off the porch, but my upper body remained in control. Only my legs were affected by the cataplexy. I have no idea what triggered that one; it is possible it could have been emotion since it was the first really nice spring day of that year, and I was excited to be getting out of the house, but I'm trying to speculate in retrospect so I don't really know if I was getting excited right then. Compared to the frequency with which I faint, the cataplexy happens to me pretty rarely--maybe a half dozen times a year? Certainly less than once a month, I'm sure of that. Sorry I can't be more specific/helpful. It's been hard to draw the line in the past between where one type of "episode" ended and another began, especially when I didn't have diagnoses and names for the different things, and trying to make these distinctions in retrospect isn't always easy either.

Yes, I'm actually having a second sleep study done; I think they will get more information this time because they're doing it slightly differently with my meds. They're rather clear on the diagnosis. The part that went off my history strongly was that the narcolepsy started in my childhood and predated my POTS; they could tell because I had sleep paralysis and other symptoms even as a young child. At summer camp in middle school, every child got a unique certificate at the end of camp ... best at fishing, best singer, most outgoing, etc. I'm not at all joking when I say I brought home a certificate that read "The Sleepiest." Kind of embarrassing, but now it makes a bit more sense finally; at least I know I wasn't just lazy.

They do the diagnosis through a rather detailed history (at least with me he asked about a million questions going all the way back into my childhood and everything), and poring over my medical files. And by the results of the sleep study. There are also some other tests they can run that aren't conclusive in and of themselves, but can help give clues if it's still fuzzy after they get the history and the sleep study. He said my case was black-and-white so I don't think they're going to do those other tests (a blood test, a spinal fluid test, something like that--I read about them online, but from what I read they don't seem particularly useful since they're not entirely specific/accurate for narcolepsy--I think they use them more often in cases where the person doesn't have the cataplexy symptom). I still can't drive because I faint frequently from the POTS, and well, we haven't even started trying to treat the narcolepsy yet. It'll be a little complicated because of the POTS and trying to avoid medication interactions/adverse side effects that would exacerbate the POTS. But I'm hopeful. He's going to get in touch with my other doctors to talk about meds and everything so they can collaborate on a treatment plan. I'm not in a rush; I can be patient. For now I'm just relieved to have an answer. One step at a time. :-D I'm still waiting on my appointment with Dr. Grubb as well.

I don't have attacks from strong emotions either. The doctor said not all people with narcolepsy have that same trigger. According to the Narcolepsy Network website: "Cataplexy (the other hallmark symptom of narcolepsy) is a sudden loss of voluntary muscle control, usually triggered by emotions such as laughter, surprise, fear or anger. It occurs more frequently during times of stress or fatigue. The cataplectic attack may involve only a slight feeling of weakness and limp muscles (such as sagging facial muscles, a nodding head, buckling knees, loss of arm strength, ?garbled? speech); but it may also result in immediate total body collapse, during which the person may appear unconscious, but remains awake and alert. These attacks may last from a few seconds up to thirty minutes." [emphasis added] Another thing I found pertinent to me there was that cataplexy occurs more often "during times of stress or fatigue." Mine seems to be almost always triggered by syncope (except maybe one time it was triggered by near-syncope and another time I don't know what triggered it), and I guess that would pretty easily qualify as a time of stress, so in that context it makes sense. For me, I come out of the syncope but I can't move at all or speak but my eyes are open and I can see out of them and I can hear; it takes varying amounts of time to "wear off" for me from minutes to sometimes hours to be completely not weak or paralyzed anymore, with no more slurred speech. When I have been at the hospital during these attacks, the doctors and nurses have thought I was still unconscious. I was tested extensively for periodic paralysis, and though I do have hypokalemia, the tests for PP came back negative. Good luck with the testing! I hope you find an answer like I did--I know how frustrating and scary it can be to have these attacks and not know what is going on!!

I had posted months ago about episodes of paralysis I was having as I was coming to from syncope. I was getting nowhere with the entire neurology department at the hospital I use in terms of finding an explanation for these episodes, and the main neurologist I saw there had basically started treating me like a nut. I got a referral from my cardiologist to a neurologist outside of that hospital system, and started working with the specialists in his office basically starting back at square one and seeing the different sub-specialists there. Today I finally have my answer. The sleep specialist there was EXTREMELY thorough, taking a history that went all the way back to my early childhood, rather than just from the onset of my POTS symptoms like other doctors have done. Apparently, I have had narcolepsy since I was a child, well before the onset of the POTS/syncope. But the cataplexy (paralysis) started only when the syncope started, as in my case, fainting seems to trigger the attacks. I am very relieved to finally have an answer, and to have found a doctor who was so thorough in examining all of my records and taking a complete history from me, so that he could really figure out what was going on.

I have asthma, and while I try to minimize how often I take my albuterol because it makes me feel jumpy and tremulous, it doesn't trigger severe tachycardia in me or anything. So I think it varies from person to person, and some people can safely take the inhalers. On top of that, I know I've read that it's important for dys control to keep allergies/asthma under good control, so I would put a priority on getting those allergies in check.

I hope this is the right place to post this? http://www.opednews.com/articles/Are-You-S...081228-904.html

I think you can make it work having one local and one long-distance specialist. I am doing that for my POTS doctors and it is working; I think it's really the most practical thing to do when you have a top specialist on your case but they are not local and don't necessarily have as much time available for every patient. Hopefully, you can get the docs to work together comfortably with each having an important role in your care. Congratulations on getting dxd and I hope you start seeing improvement in your symptoms soon!! Hugs!

I get my face going numb sometimes, almost like it feels like shots of novacaine from the dentist. It happens most often on exertion like if I've gone up a flight of stairs or something, but sometimes it will just happen randomly. I don't think it usually happens to me while eating, though. There is something called a swallowing study that you can have performed (it's a radiology test, usually performed by a trained speech language pathologist) if you're concerned that this might be causing you to choke or swallow things "down the wrong tube," as people say.

It appears from their website it's 7 calories per 16 oz.

Thanks for the tips, everyone. It really helps to hear from other people's experiences. Feel free to add if you think of anything else. :-)

Now that I've been approved for a Medicaid Home Health waiver, my case manager said there is a budget for things like walkers, grabbers, home modifications (like widening doorways if you use a wheelchair) and asked me to keep an eye out for ways that my life could be made safer/easier in my home. I'm wondering what types of things others have found most helpful or have tried and found to be duds. Right now I am getting a shower chair. I am also trying to get a rollator walker. I have some problems with getting dizzy/near-syncope when I bend over and then stand back up again, but I'm not sure a grabber is really going to be functional for me. Does anyone else use one? Do you keep it just in one place in your house? Do you end up having to walk all over the place to go get it before you have to get something off the floor, and isn't that inconvenient? Or do you keep the grabber with you wherever you go, and isn't that inconvenient? I guess I just can't see it being very practical for me in a 3000+ square foot house, unless I somehow had a separate one in each of the rooms I use most often. I guess I should say that the problem in general I'm trying to solve is anything that will reduce situations that prompts syncope, or will provide opportunities for me to catch myself prior to completely going out and get seated (which is my hope with the rollator--having a seat right along with me as I go). My triggers for syncope are all the usual POTSy suspects.

I hope you'll both get to feeling better enough to look back on all this and laugh about it! Sending hopes of happy holidays and better health in 2009, Heif.

There is an article on the list on DINET about pregnancy with POTS: Pregnancy in postural orthostatic tachycardia syndrome. Glatter KA, Tuteja D, Chiamvimonvat N, Hamdan M, Park JK. Pacing Clin Electrophysiol. 2005 Jun;28(6):591-3. PubMed Might be worth looking into if you're looking for more information. Congratulations, and I hope everything continues to go well!

Ernie, At least I know I'm not being weird. I just really try to avoid the ED because it seems like they don't want to see you unless a bone is sticking out through your skin or your heart completely stops beating or you aren't breathing. I pretty much only go now if I get specific instructions from my doctor that he wants me to head there. I'm sorry to hear that you've had so many injuries. The herniated disk sounds so painful! :-( My worst so far was going down the cement steps in front of my house head first. It took forever for all that to heal up, but I don't think it did any permanent damage so I guess I was lucky. Are you able to take anything for the pain?

I went over a bunch of test results with my doctor today. It turns out that I may have had a small stroke when I got the concussion in September from having syncope and hitting my head on cement. We don't know conclusively right now, but it's possible. I guess it doesn't matter either way, because what's done is done, and I've got the same symptoms regardless. But it was still one of those things you don't really want to hear. My mom was second-guessing my friends' decision not to haul me off to the ED that day. I think that's ridiculous. How many times a month do I pass out/fall down? I probably hit my head a good proportion of those. It's ludicrous to think that I should shuffle off to the hospital every time, and the only real "symptom" I had that day was a bit of clumsiness after it was over. Which also isn't particularly out of the ordinary for me. We only realized it was a concussion when I developed a constant headache 24/7 for days and weeks afterward that didn't resolve. Of course hindsight is 20/20. For everyone else who has frequent syncope/falls, are you suffering serious injuries? Don't you hurt horribly and have headaches after nearly every fall? How can you possibly tell without waiting it out a few days whether it's going to be just another sprain/bruise/goose egg (not warranting a trip to hospital) or an actual broken bone/concussion this time (necessitating a trip to the ED)?

I sit cross-legged when I'm at the computer. There are also computer programs that will reverse the contrast on the screen so everything is kind of white on black instead of black on white and thus much darker. If you use a mac with OSX, just hit Ctrl+Cmd+Opt+8 to toggle this on/off (you don't need to add a special program, it comes standard with the newer distributions of OSX). There are free opensource programs such as Nocturne that you can download for this as well that are more adjustable. http://docs.blacktree.com/nocturne/nocturne For windows users, I don't have any experience with these kind of programs on windows so I can't really recommend anything in particular. But a google search turned up this: http://www.aquiladigital.us/darkadapted/download.html . . . It doesn't look as user-friendly as nocturne, but maybe if you just adjust the brightness down and don't mess with all the other jillion controls it will work.