peregrine

I'm having TTT and other autonomic testing later this month. The neurologist told me I could stay on my lamotrigine, Seroquel, Lyrica, and birth control, but needed to come off of my atenolol (boo), Cymbalta, any as-needed meds (albuterol, ibuprofen/other NSAIDs, hydrocodone, lorazepam, dramamine, benadryl, decongestants, etc) within 5 half-lives of the medications (that would be equivalent to going in with 1/32 of the dose in my bloodstream, although she said 5 days and for most of these meds that's more like 1/1000 the dose). Emailing her now to ask if I need to also stop water and salt loading and wearing my compression stockings too, and whether I should continue all the stopping through seeing her the day after and any relevant bloodwork. My poor man's TTT at home was pretty significant - I recorded it and show it to my docs, and they like the info. Need to do it again with stockings and atenolol!

I just did this and had my (non-dysautonomic) partner do it too - our hands looked the same and he described the same symptoms. Normal physiological response? (now he knows how my legs feel!)

I've heard good things about San Diego - 60s-70s during the day and 50s-60s at night year round, and is fairly dry, with consistent humidity - actually the reason my partner didn't want to move there (he loves changing weather too much)! No experiences for me personally, though. Can you guys visit Hawaii and see how it goes, maybe if he gets some leave?

I've got fibromyalgia as well - tender points were my main diagnosis, since most of my pain is joint pain due to hypermobility syndrome. I was on Cymbalta (currently weaning off), which appears to have been my dysautonomia trigger (going off of it didn't make the dysautonomia stuff go away). It was really helpful - daily pain went from a 4-6/10 to a 1-2/10, which was great! I'm weaning off of it again because it makes my jaws so tight that I grind my teeth and then can't open my jaws fully in the morning; they haven't fully opened since September of 2011. Switching to Lyrica and noticing a little more pain than on the Cymbalta, but I'm still tapering on the Lyrica right now. Conveniently our decision to switch to Lyrica lines up with my autonomic testing later this month, since they said I can be on Lyrica but not Cymbalta. I can tell the symptoms apart quite easily, since I've had the pain/brain fog/fatigue of fibro/hypermobility since age 15 and the dysautonomia since age 25.

Currently working on my workups (autonomic testing later this month) to figure out what the causal factors are in my case. Also, re: QSART, University of Washington Medical Center in Seattle does offer it as well; I'll be getting it on 2/23 along with various other things.

Neurologist told me to go only if I pass out for real (as opposed to just graying out which has happened before) from standing just to make sure my head is fine. So far, no visits.

Ah, clothing - I forgot to mention that! Sweater always in any weather, plus my alpaca wool hat (can even be lowered over the eyes if I need a nap or vision is overwhelming) and biking gloves to keep my hands warm. Also compression stockings. Set is a card game where you attempt to match cards into patterns - it can be played solitaire, which is how I play it. I find that fitting the cards into groups can help me regain some function during times of brain fog, and it's more useful than surfing the internet to regain function when I'm completely frazzled at work!

Inspired by a similar post on another chronic illness forum. What items do you take with you every day, don't leave the house without, stash in the car/your office if you drive/work, etc? I'm thinking specifically dysautonomia-related stuff, but other stuff for related health conditions might be good too. For me - full liter water bottle, bag of goldfish, dramamine, ibuprofen, as-needed meds (lorazepam, hydrocodone, albuterol), salt, collapsible stool, deck of Set cards (to help brain fog), wallet card with health info. Specifically for joint issues - ace bandage, folding cane. Also a full day's supply of all of my meds in a keychain pill case. How about you?

On Friday I saw a neurologist who specializes - in part - in dysautonomias. She and my partner and I spent about an hour and 15 minutes talking about what's going on with my body, including a ~20 minute neurological exam (the only weird finding was that my pupils don't really react to light levels, but are not Adie's pupils, so it's probably just more dysautonomia); the rest was just sitting in chairs talking. She liked my use of my laptop. I am pleased. She even acknowledged that I had probably done a lot of research on the issue, so we didn't have to do the medical equivalent of baby talk. Win! We started out by talking about how things started. She'd already read all of my medical history, including the Holter monitor strips from August, so I didn't have to rehash hardly anything. I gave her the quick overview (took Cymbalta, developed symptoms, started realizing I had tachycardia, stopped Cymbalta, issues persisted, atrial tachycardia diagnosed, started diltiazem, worsened things, started stockings, seem to help, switched from diltiazem to atenolol, it helps a lot) and then we went into deeper detail. It sounds like - based on her initial take, with more definitive results post-testing - I might have two problems. The lightheadedness while standing, tachycardia, presyncope, etc are likely POTS, but the eye blurriness, brain fog, digestive stuff, etc may be due to just generalized dysautonomia, since they don't seem to correlate to posture. What do you folks think of this? She seems to be more of a "splitter" than a "lumper," if that makes sense. We talked about my history of faints and near-faints around needles (generally lightheaded, fainted in 2001, near faints twice in 2011) - she said that folks with dysautonomias often have some degree of fainting around painful/bad stimuli from a young age. She also suggested, perhaps to be done later, that I chat with one of the medical genetics clinicians who specializes in connective tissue disorders and dysautonomias. My maternal half sister and mother both have loose joints, though not as bad or as symptomatic as mine. Short-term, we're starting with some over the counter treatments until I can get in for testing next month (tilt table, Valsalva, QSART, other physiological tests). The issue is that I need to be off of several medications before then - I was already planning on stopping Cymbalta because I can't open my jaw all of the way any more due to tension, but that will take 4 weeks to finish tapering down off of. It would be 3 weeks, but I have a conference to attend next week and Cymbalta was a terrible taper last time - severe vertigo including inability to stand, plus nausea severe enough that I spent each evening sitting in the bathroom. Not really compatible with a conference! She also wants to do some bloodwork, I think, but given my history didn't want to make me do that now. I told her I was fine with draws (pretty much true); there might be some weird standing draws and stuff to look at postural levels (lying/sitting/standing) of norepinephrine and the like, which I bet I'd find less fun. Treatments I'm starting now (she was originally going to hold off on these until testing, but when I told her how bad things were she told me to just start now): (1) Salt. Starting with 1 gram (a bit less than 1/4 teaspoon) 3 times daily with food, tapering up as desired to a possible maximum of 20 grams a day. Apparently even a junk food diet only gets you 5g, and I need more than that! (2) Continuing drinking plenty of water (60-80 fluid ounces) and continuing to eat regular small meals. (3) More compression stockings - the ones I was using before were 15-20mmHg and knee-high. I'm now (well, as soon as they arrive, hopefully pre-conference) switching to 30-40mmHg thigh-high stockings. They're expensive ($80/pair); insurance covered the last pair, so we'll see. We wrapped up with a chat about my spacey-while-walking sensation and how nervous it makes me. I explained that I'm always too spacey to drive, but that walking is particularly bad - my concerns about going the wrong way, or walking into traffic/not noticing cars, etc were hard to get across, but I think I got some of it. She's not sure of how to treat this particular issue; we'll see if it improves with the treatments above. I'm spacey just writing this right now and I'm loafing on the couch! I had a really bad episode yesterday - started feeling really bad after walking around grocery shopping, ended up having to sit down at the grocery store on a convenient bench, sweated a ton, held onto my partner's backpack all the way home (soooo helpful), flopped on my side and ate goldfish to kill the nausea, ended up sleeping for 2 hours.

From what I've read (both on the dinet site about POTS/EDS and vision and elsewhere), it sounds like you should definitely get an opthamological exam ASAP for the double/triple vision if nothing else, since that can be a sign of more serious problems if nothing else. For me personally, the floaters and blurriness are symptoms of my dysautonomia being worse (and apparently dry eyes can be similar, though I don't get them), but the double vision is worrisome.

My neurologist just recommended one today as a potential course of action; we haven't decided to go forward with it yet. I have bad sleep - often though not always triggered by medication (norepinephrine-reuptaking meds seem to make it much worse) - so I take Seroquel to keep me from waking up as much in the middle of the night. She is very concerned that my sleep is bad and thinks that fixing it will be a good thing to do once some other testing gets done, I think.

I take albuterol very infrequently, except pre-diagnosis when I was backpacking or exercising regularly. Initially I didn't have any of the tremor, racing heart, palpitations, etc, but they started with albuterol when I was about 21. Since the diagnosis I've taken it during exercise a few times and the effects haven't seemed any worse than the background dysautonomia worsened by exercise, if that makes sense? I had walking pneumonia at 15 and have a recurring daily cough as a result.

My hyperhidrosis didn't start until the onset of my dysautonomia last year. When things are really bad - especially if I nearly pass out - I sweat a ton! It's one of my "hey, you need to sit down NOW" warning signs, hilariously. For a while in the summer - Seattle summer, so not above 70F - I would sweat so bad my dress shirts would stick to my back and even my black dress shirts would show huge pit stains. Fortunately my physical therapist never said anything about it, because I was extremely embarrassed...

Totally! And - at least for me - it's not just good days and bad days - although that can be a lot of it. I walked to work today in the ice/snow (stupid, I know, but I had to get there) and was doing okay, maybe a little worse than usual, but still able to walk the 1.75 miles downhill (despite spacing the whole time, I can at least physically walk there). But then, just fifteen minutes ago, I was trying to move some not too heavy equipment and attach some cables (while standing up but moving around) and now I can barely type, my hands are shaking so badly and my nervous system is so riled up! Got to love our bodies - they're just so confusing.

My mom had a lot of success with acupuncture for chemo-induced nausea; I know they're of different etiologies (cell death versus dysregulation), but if you can afford it it might be worth a shot. She even got our (liberal) insurance to cover it (this was about 15 years ago). I'm lucky in that I can get by with Dramamine when things are bad, or I just end up curled up on the bathroom floor. My sister takes phenergan and swears by it. Nausea is (thankfully) not one of my worst symptoms - sorry to hear it's so cruddy for everyone!

If I can't sleep in the middle of the night, I will often go sleep somewhere else - couch, guest bed, even the bathroom floor if the nausea is really bad and I'm too scared to wander away from the toilet. Sometimes just changing where I am will help me drop right into a deep sleep, or going there and reading with a tiny bit of light and a small snack and then I drop off pretty quickly. I even slept 5 hours on the bathroom floor once - stole my pillow and put my towel over my body like a blanket. As to what Jen says - I definitely would try crashing somewhere else (I have semi-permanently colonized our couch and padded bench), making it kind of a nest you can relax in, and then bed becomes something separate. Actually - does anyone else notice that their dysautonomia is waaaaay worse after not enough sleep?

I use Google Calendar for my scheduling - it sends me an email every morning (well, every 2am) telling me my schedule for the day. That lets me preview every morning what I have going on that day - it sometimes helps me out quite a lot. If there's nothing on the schedule, it will send an email saying "You have no events scheduled for today" and then I know I can relax!

Grief has been a big thing for me lately. I look at the last few months' episodes of depression and - counter to my usual bipolar pattern - they are all related to dysautonomia. I tend to waver back and forth between anger, depression, and acceptance. Many days I find I am able to accept the changes in my body, and - more importantly - the changes in my life. I can deal with a lot in my body if my activities of living aren't restricted, but that's not so true any more. But many days I get depressed - why can I not stand up and dance at concerts? Why can I never be truly independent or travel alone again? Why can't I drive or ride a bicycle - will I be reliant on public transport for the rest of my life? Will I be able to work after grad school? What will happen if my partner walks out on me (due to the dysautonomia, and yes, we're in couples counseling as a result) - will I be able to live alone? What will I do to as an annual "mood renewal" ritual, since backpacking seems like not such a good idea and that was the thing that kept my mood stable for the rest of the year? And then I get angry, because it seems so darned unfair - especially because I finally got used to having a messy brain and painful joints and high risk of breast cancer and figured that was the worst of things and got some perspective. But then my body got this new thing and it's been really tough coping. Strangely I am not angry for taking the Cymbalta, which triggered the dysautonomia, because it improved my joint pain a lot and it's in the past anyways. I don't believe in karma (although I do get really pissed when people tell me my health problems are karma!) or fate, but it does seem unfair somehow, even though I know life isn't unfair. I think acceptance would be a lot easier (and depression and anger lower) if I knew what was going on, had a path towards treatment of any sort, had a stable place with a set of accommodations that made working easier (I'm lucky I can work, although if I weren't in grad school with an amazingly flexible schedule I'm not sure how true that would still be), etc. As it is I'm still waiting for answers of any sort (even "we're not sure but try this thing"), and that's been really hard. I feel out of control, and that makes me angry at the system (both primary care doc and I are pissed that it took Neurology 3 months to schedule an appointment - just schedule, not actually wait to see someone!), and depressed about my future, etc. Thanks for bringing this up, and being here - all of you. It took me a while to respond to this because it's a vulnerable question, but I'm super glad that it got brought up, because grief is definitely the right word. To Jen: I went through most of the stages of grief when I lost my mom at 15 to cancer, and while death of a loved one is certainly different, I'm glad you were willing to bring it up regardless - no offense at all. Sounds like a lot of us are going through it.

Oh man, Jen, that last thing he said made me tear up just now :^) It sounds like he really cares, even if he cares too much, if that makes sense? I am in a situation that's somewhat similar to yours, only maybe milder. My partner and I have been together for a while (over 8 years now), aren't married or anything, just a live-in couple. I developed the dysautonomia stuff in the last year and he's really having trouble dealing with it... he sees me as not the person he was partnered to back in the day, worries about my health, etc. He also has some depression that dates to before our relationship (and runs in the family) and he claims that he is only depressed because of my body being messed up, but I worry it is compounding already existing depression and making it worse. Plus I don't have the ability to complain with humor, if that makes sense - I can't say things like "oh man, didn't realize *that* was a side effect/new symptom!" or "did you realize that X percent of people with POTS aren't able to work" because then he just freaks out and gets even sadder, whereas for me those are coping mechanisms because learning more about my disorders always helps me feel more in control. We have just started couples counseling (I already see a therapist and psychiatrist for my own mental health issues, which are well controlled) to help both of us deal with each other. As my therapist says, "It's easy - on a relative level - for you to come to terms with your condition; you don't have a choice, or - as you say - "it is what it is." For him it's a lot harder - he has a choice to make, and that's really difficult." The couples counseling seems to be promising so far - she is talking to both of us together, then each one of us separately, and then both together again. Super glad you are going through with the around-the-house assistance stuff - that should help a lot. And last time I checked, POTS wasn't fatal, with the exception of stuff like fatal head injuries from syncope. Do you think it would reassure him if you wore a helmet to prevent injuries from falling?

I get this ~constantly, especially when I'm walking somewhere; I just space out, zombie-like. When sitting I just stare at things, just become a body sitting in a chair not accepting sensory input. Could be the meds; might be worth checking with the doc or pharmacist. But if it's not them, then it wouldn't surprise me. Welcome to our spacey world, or something like that?

One thing my folks did when I was younger (and was superbly likely to forget to do important things) was have a daily checklist on the fridge - "Have you unpacked your bag? Have you eaten your snack? Have you done your homework? Have you practiced your piano?" etc. Perhaps trying something like that, either on a smartphone, computer, or fridge - so you can do a quick daily rundown of "Did I receive any bills today, if so, pay them? Are there any doctor's appointments I need to schedule, or do I have any tomorrow? Did I take my medications today?" That way you don't have to remember day to day what you might have to do, but can quickly scan the list to see if anything needs to be updated.

First waking - normal as far as I can tell Symptomatic - the same, definitely Mobile/feeling okay - the same too! Visible veins - yes, my veins are for the most part visible, and I rarely have had technicians have trouble finding a vein anywhere. They're even willing to do IVs in my forearm because the veins are so easy to find. Lots of visible veins all over my body (worth mentioning I have very pale skin).

I recall seeing this topic and not commenting, due to not having anything to say... and then was walking to work two days ago, waaay too warm from sweating, and took my sweater off in the 30F weather. My arms were bright red and wind-chapped from the cold, but my hair was down and there were hardly any bumps at all - mostly just a couple of low-level ones. Certainly different than before!

Thanks! Sounds like it's waaaaay more complicated than I imagined. My BP is all over the chart, too - half the time when I get it done (always sitting) it's 140/85 and the other half it's 105/65. Doesn't seem to correlate with exercise, but I do walk to doctor's appointments. So who knows!

Waiting for my doctor's appointment (9 days to go!) to see a definitive neurologist who has had some satisfied folks here. One thing I'm very curious about is whether we can diagnose which subtype of POTS someone has based on what they respond to? I think this topic has come up on the board before but I couldn't find it via the search. Here's what's worked and what hasn't for me: Worked: walking exercise (I assume due to moving blood) is better than standing tightening leg muscles/bouncing/twitching/etc while standing compression stockings - mostly that I'm worse without them (15-20mmHg, knee highs) atenolol (beta blocker) Hasn't worked: drinking enough water (occasionally no water makes it worse, but only when I get below 40 fluid ounces a day) eating constantly (although skipping meals is bad) diltiazem (calcium channel blocker) - appeared to make it worse Cymbalta (SNRI) - appears to make it worse No effect/other: flying, despite not drinking enough water no visible pooling, even during hot showers flushing with direct contact with hot water during showers very strong trigger with fewer than 8 hours of sleep This seems somewhat consistent with the partial dysautonomic (PD) form that Grubb cites in his article "The postural tachycardia syndrome: When to consider it in adolescents," (Family Practice Recertification, Vol 28, No 3, March 2006, worth checking out!) except for the following reasons: Water intake hasn't helped much Symptoms originally caused by Cymbalta (which hits norepinephrine really strongly), although they did not go away when we stopped it No visible pooling So the Cymbalta origin made me think hyperadrenergic, since it triggers NE so strongly. But it feels like it may be more PD than hyperadrenergic. And I do have hypermobility syndrome, which has been correlated with the PD form of POTS as far as I know. Thoughts much welcomed, or a lecture for trying to turn you guys into diagnostic tools :^)