Dyspatient

Thanks Corina! Sunshinegirl, I'm about there myself, my occupational therapist and I were brainstorming about how hard it would be to make a tank top out of a cooling towel. But I'm not very skilled with the sewing machine...which my sister has anyhow. So yes, I'm definitely interested!

Well, lucky me, I get both kinds....vertigo and what you're describing as your type (which I'll just call "dizziness" because that's what I call it). I term the former "vertigo" because it's actual rotational, eyes rattling in your head, room spinning and lurching around vertigo. Doesn't matter if you're sitting or laying or standing on your head, if I move my head a particular way (never know which way it's gonna be), it triggers it and I have to just grit my teeth and hang on for the next 30 seconds or so until the room stops moving and my eyes stop rattling around. I term the latter "dizziness" and for me, it is a sort of disequilibrium that is less acute than the vertigo attacks, but far more pervasive. My dizziness is so very much like what you describe, right down to the analogies you use to describe it. That I get both sometimes seems to bother doctors. Some of them seem frustrated or disbelieving that I do actually have vertigo and "dizziness". I've had some providers try to fit me into an "either/or" group. Not sure why. You can have both. I get vertigo from sinus issues (vasomotor rhinits isn't helping) and migraines. I get the dizzies from...well everything else, but largely hypotension and it's a fatigue symptom for me.

Although I'm thrilled that the snow has finally melted here in New England, as usual, I find I'm dreading the start of warm weather. It makes everything worse! Migraines, POTS, hypotension, and on top of it all, in the last two years, I've developed hypohidrosis...I no longer sweat enough in the heat so I'm always overheated. I know I'm not alone in this dread of summer. I'm curious about sharing our tips on surviving the warm weather. Here are some of the things I do. Smoothies and homemade popsicles. Got a popsicle mold at Target. I try to do as much prep in advance as I can for quicker smoothie making, e.g. I get a bunch of bananas and cut them up and freeze them for the week, puree & strain berries and keep them in tupperware in the fridge, sometimes I make pureed ginger root "ice cubes" too.Cooking in the morning, and spread out over a few days (I have to make most of my food from scratch due to gastroparesis).Carry a water spray bottle to mist myself when I get overheated.Hats! Lots of hats to keep the sun off my head and face. I'm thinking of buying a cooling hat this year.I finally broke down and got a rollator earlier this month. I know it'll help to have a place to sit whenever I need it when I'm out and I get hit with a wave of exhaustion or pre-syncope.A clip on UV blocking beach umbrella for my tiny little porch so I can sit outside without baking in the sun.Lots and lots of rest breaks.

You've gotten some great advice here from more recent dog owners than I am. I would add in these two tips. I have a good friend with fatigue and pain causing chronic health issues, and she has two labs. They are a lot of work, gotten as pups and there was a lot of training and walking, and well, everything everyone has said. One thing that has worked for her, on her down days, is using doggy day care and having help from a good dog sitter/walker. It's extra money, so look into costs in your area and factor that into total dog ownership cost. She does doggy daycare about two times a week. I think for those of us with variable chronic health problems, doggy day care and walkers are a necessity. The other tip is pet insurance. You had mentioned vet bills as a worry. Yes, it's an issue. We got a new cat last year and the first year of vet bills were insane...he was a kitten (rescue), which means more routine vet visits, but he also came with pulmonary and intestinal parasites that racked up some pricey vet bills over the first 7 months we had him. We eventually broke down and bought pet insurance (Embrace), with a "wellness" rider that pays for their annual "well kitty" check ups and shots. On a health young animal, the premium shouldn't cost too much per month, depending on the kind of coverage you get, and if you get the insurance right away before the dog has any history of health problems, there won't be exclusions for "pre-existing" conditions - so anything acute that comes up after a waiting period (I think ours was a month) will be reimbursed to some degree, which can be a real help if you're living on a budget and can't afford a huge hit for a pet health crisis. Again, it's a cost to look into and factor in before getting the pet, but it can help make unexpected vet bills a lot more easy on your wallet.

I was diagnosed at 41, after I somewhat serendipitously subluxed my hip on my way in to an appointment with my primary care (for something totally unrelated). He saw me limping and asked what was up "My shoe fell off and I turned my leg out to get it back on in the car and my hip went 'ping' and now it's back in badly," I explained. He sighed, and said "does this happen a lot?" "Oh yeah." He then put me through the Beighton scale, I could do a lot of the larger joint motions but not the finger stuff, and said "do you want to see a rheumatologist? like, right now?" because my PCP shared office space with a rheumatologist it turned out, and the rheum's current patient had been a no show. So down the hall to the rheumatologist I went, did all my bending and whatnot, and ended up with a referral to a geneticist in my area. A BIG family and personal history later (which included paternal side deaths from aneurysms, exceptionally tall, flexible maternal aunts, and a personal lifetime history of passing out including a positive tilt table test two years prior) and I was given a clinical diagnosis of EDS, most likely hypermobile type. My genetic testing revealed a mutation in the COL3A1 gene, the gene that goes with EDS-IV/vascular, although my mutation was a novel one and we have yet to do any family testing. And so now I have a diagnosis. A strange path to that diagnosis. I still question it, since I do not have exceptionally elastic skin and even in just the last two years I have lost a lot of flexibility (my muscles are in a lot of spasm, making up for my joint hypermobility, explains my physiatrist), and my siblings are not very affected...but it does explain a WHOLE lot of my otherwise "unrelated" symptoms, including my POTS, NCS, and tendency to hurt myself just bending over. I'm exceedingly thankful for my PCP being a very on the ball kind of guy, and for my hip doing it's rotten little trick at just the right time.

Oh btw, psychology + computer science = cognitive science!

I worked in college disability services (DS) for 5 years. My sense is that you're going to have a tough time finding a school that's POTS-aware, just because this is so specific a diagnosis. And not terribly common, in terms of diagnosis, not necessarily incidence. Fortunately, there is a lot of functional need/accommodation overlap with other better known illnesses like chronic fatigue syndrome and some symptoms of MS. I think the big challenge will be finding a school that is PHYSICAL disability aware, and not just focused on learning disabilities, in their DS offices. And that can be assessed initially by looking at their DS office websites, seeing how much, if any, air time they give to non-LD disabilities. If there is no mention of them but lots of emphasis on LD, I recommend putting them on the lower ranked list. And nothing can substitute for a visit, with an appointment at the DS office. Plan for an hour at least, and plan to send in functional limitations and diagnosis confirmation letters from docs. That's all they need, if they say they need "testing", odds are they are talking about LD again, just fyi. At an appointment, you can get a sense for the physical lay out of the campus and ask about their experience in accommodating students with needs like your son's. Ask what sorts of accommodations they would recommend for his needs, and ask what sorts of challenges they see students facing with those needs and accommodations. You may not get a 100%, not sunny-sided answer to the last question, but how they answer it can tell you a lot. If they say "no one ever has any problems with priority seating in classes" that's a lie, and you'll know it's a lie because there are always some issues. You want to get a sense for how they handle those issues when they come up. Are they proactive with faculty? Do they offer support for students in self advocacy? How is disclosure of accommodations handled with faculty? Is it done through their office or is it entirely up to the student? Lastly, based on my own experiences as a POTSy, undecided, smart rising senior without the high grades and record of scholastic achievement to back that up, I would HIGHLY recommend that you talk with him about the possibility of taking the first year part time at a local community college or state school and living at home, if the commute can be easily handled. If you have a school that is close by, going there part time would let him knock out a few credits while keeping his living arrangement stable and quiet (unlike a dorm, ugh, awful for people with chronic health problems and there's no accommodation that can deal with that). It might also give him a chance to see what subjects he likes and might want to major in before he takes that plunge. It will prepare him better for full time school. Keep in mind that full time may not be an option for him, and navigating what the school counts as full time vs. what the federal government counts as full time for financial aid purposes will be something to look into. I did much MUCH better as a nontrad undergrad who lived off campus in a stable, "grown up" apartment and went to a local non-trad friendly state school part time. When it comes to college, one size does NOT fit all. Keep that in mind and help your son to see it. Nothing wrong with a nontraditional path through higher ed. Good luck!

Thanks Katybug. I'm looking into non-"prescription" alternatives for compression tights/hose. I can't afford medical grade. So if anyone has any suggestions, I'm open! My physical therapist asked why not just try spanx, "at least it'd be something" she said. Hm. Has anyone used non-medical tights for compression hose? How did you find ones that didn't cut into your stomach?

I decided I need to give compression hose another shot. My blood pressure's just too crappy. I've been avoiding them for various reasons, concern that the waist band will be too tight for my frequently boated and sore gastroparesis belly, allergies to elastic treatments being a main one, and concerns about "swampiness" from the waist high hose I am told I need to wear, and cost - i.e. if I pay all this money to buy something that it turns out I'm allergic to or that I can't wear because they give me a yeast infection, I'm out a lot of money. And it's money I really do not have to burn right now. I'm not working right now, I have negative disposable income. My occupational therapist mentioned that insurance companies sometimes cover hose as durable medical equipment (DME) so I called today. I found out that my insurer only covers (at 80%) knee and thigh high, and only 30 mmHg and up. Great. I actually said "So you basically cover compression garments for conditions that are not orthostatic intolerance, since that requires waist high hose" and the girl on the phone said "yeah". Let's put this in perspective (and I know I am preaching to the choir but I need to vent to people who will understand)...they will pay for me to go to the ER if I pass out, that's covered, as would be the head CT if I manage to hit my head on the way down (which I've done in the past). But they won't pay for waist high compression hose, hose which might (if I can actually wear them) help me not pass out. So I can shell out over a hundred dollars to try something that I may not even be able to wear. how is this cost effective? how is this even remotely sensible? I do not get it. Sigh. Has anyone had to fight their insurance on this? Did you win? Is it worth it?

Oooh, that's interesting news Claired! That would be great. I hope this isn't too off topic, but talk about sugar content made me think of it. I've been given a lecture by my primary care several times now about needing sugar for rehydration to be effective. Does anyone know about that? I think I recall him saying something about needing sugar to transport across membranes....er, or something. Just curious because while I dislike and generally avoid sugary drinks, I do sometimes find for myself a big glass of ginger ale makes me feel much better than a similar amount of water plus electrolyte tablet.

I hope you don't have to deal with it that long, or at least that you get good answers and have a medical team that can support you in finding effective treatment options. That's so important. It's a dizzying (no pun intended) process to find a good doc or set of docs to help you with this, but it sounds like your on the right track. I wish I hadn't waited so long to seek out an autonomic specialist!

Well, I hope you're feeling better today. I also feel bad the day after a migraine. For me, "hangover" describes it pretty well. But because I feel better than I did the day (or days) of the migraine, it's easy for me to overdo things the day after. I've had to learn to pace myself the next day, and to consider my day after still a bit of a "sick day" and take extra care of myself. I drink more fluids, I rest more, I eat foods that are easier for me to digest since I also get a lot of nausea with my migraines (I had a migraine specialist tell me that my migraine probably makes my gastroparesis worse). If I go out, I make "escape plans", i.e. a way to get home or to a quite place to lay down quickly (these plans usually involve my husband because if I feel bad, I don't like driving).

Oh the snow is just killing me! I'm up near Boston, I'm not working right now (thank god) but it's made getting medical stuff taken care of really tough. I've had to reschedule an ultrasound three times now, between acute health issues and the snow! I've had mixed luck with neurologists. My tilt table test results showed NMS in 2010 and POTS in 2013, but I'm accumulating other autonomic symptoms and I don't have any unified answer for this all. I saw one neurologist who was an autonomic specialist in 2013 who was not helpful, I'm working on getting in to see someone else. I had another, but he left his practice before we got too far (1 appointment). It's hard to keep pushing when you get set backs like those, but necessary. Sometimes I take a break just to regroup. I call it a "doctor break". It helps me stay sane. But I have to keep pushing, I know that in the end I might just get the "idiopathic" this and that label, but I'm only willing to accept that after the doctors have exhausted/ruled out anything else, which has not yet been done in my case. I hope you can get some answers too. It's sometimes a long road to a diagnosis. Stay strong!

Sheri Lynn, I'm so sorry to hear you're having a rough time right now. I hope your return to work was ok. Did the salt and fluids that Katybug mentioned help? I have a hard time getting enough fluids in too, and to make it worse, I have different docs telling me different things! But like Katybug said, my doctors also told me that I had to push salt or I'd just keep peeing out the water. Even with the salt tablets plus electrolyte tablets (sodium, potassium, calcium, mag), I do still get very low BP days, and very OI days, especially if I've had to take meds that lower my bp (like betablockers) or make me dehydrated (like benadryl). Do you check your blood pressure at home? I'm asking because for me, it helps me to know if my bad day is a bad bp day, in which case I try to really stay on the fluids & salt, lay down for breaks a lot, and maybe have a little extra dietary/food based salt too. I hope you're doing a little better. I'm really glad to hear you will be seeing a neurologist soon. I hope that's helpful!

Well, my migraines transformed some over time. And I've had a neurologist tell me that for me, when I had a series of migraines in short order, like one in the evening one day and then again the next day, he felt I should count that as one big long migraine. That all said, I do think it would be best to call your doctor, have him/her paged or leave a message, and let him/her know what's going on. As this is not a typical migraine for you I feel that change should not be ignored. Sorry if the bold is too much, but I really felt like that should be emphasized.

I get horrible reflux/heartburn from most of the drinks and mixes (NUUN tablets included). And artificial sweeteners tend to make trouble for my lower GI. So I just do water and electrolyte capsules. This means no citrus or burning berry flavors that kill my throat. The capsules I bought are called "Salt Stick caps" and they have Na, K, Ca, Mg and Vitamin D. They are kind of big though, so if you have any trouble swallowing they could be difficult. I hear a lot of people like the NUUN tablets.

One thing I never ask but should is whether they recommend any restrictions or modifications on activities. I tend to assume (I think, rightly) that it's my job to decide what I'll do and how I'll do it around my illness, however, I am realizing now that I'm applying for disability that I should have been getting documentation of doctors' advice on limitations. Like "don't drive when you feel symptomatic" or "avoid standing for more than 10 minutes" or "you should try to work in an area where you can control the temperature". These are all issues that came up at work and that I had to fight, hard, for accommodations over (ultimately they failed, hence the disability process for me). So I haven't been asking this, but I'm resolved to start asking now. With some syncope, I have noticed some of my doctors have had a tendency to not look at it in terms of a big picture. I used to pass out a lot, and no one ever said "hm, I wonder if something's wrong with that girl's autonomic nervous system..." They just chalked it up to "probably vasovagal syncope", like this happens to normal, otherwise healthy people all the time, and were done with it. Now that I'm older and have a host of (new) autonomic symptoms, I am trying to work more with my doctors to get them to consider symptoms or descriptive diagnoses in the broader context, so I'm asking things like "is it possible this is related to my other autonomic problems?" rather than having them just chalk it up as idiopathic whatever (polyuria, gastroparesis, hypohidrosis). I don't yet have this down smooth, but I know it involves asking questions to prompt them to think in a broader, more interconnected context, and I mention it because having had some experience with my syncope being written off, I hope that you can find ways to help your doctor think holistically rather than single symptom-based.

I have orthostatic intolerance, and it can be a problem, but it's often very context dependent. More problematic in a related area is my just generally crappy blood pressure (very hypotensive) and as you said, other autonomic issues. My GI being the major one. I used to pass out a lot when I was younger, but at least I could eat and digest most of the time. Since developing gastroparesis, I'd say my debilitation level has shot up, and that's on top of the OI/hypotension, NMS, POTS, and pain from ehlers-danlos. I also don't sweat enough in response to heat, but again, that is context dependent. If I can manage to stay cool, it's not a problem. The eating, not digesting, nausea, awfulness? That's just there, all the time, every day, and it limits my caloric intake. I'm on year two of this, which means two years of a very restricted daily diet to keep myself out of the ER, but the low calorie intake and even lower protein intake causes more fatigue (which worsens everything), and sometimes my GI symptoms are so bad that even my hydration status is difficult to maintain, which makes me clumsy and dizzy, more prone to hurt myself (EDS), more fatigued, more orthostatic.... It's a bad cycle and if I could just take the stomach/gut stuff out of it, my health would still be bad, but it would be a lot more manageable.

Hi, and welcome. I'm new too, so I guess that explains why I don't see how this is the "wrong forum". What's the "right forum" for an intro and discussion of what you think are autonomic symptoms? I second (third?) the advice to look for an autonomic specialist, not all neurologists are very knowledgeable about that, it's like how some GI doctors specialize in liver stuff, and some in motility....same thing with neurology. speaking of, an EMG isn't necessarily a test that includes any autonomic testing at all. Not saying it's not worth doing just that it does not specifically address autonomic function.

Chicken, potatoes, pretzels, white grape juice, ginger ale, ingredients for fat free molasses cookies, ingredients for pumpkin pudding (which has some cross over with the cookies), lactose free low fat milk. That's it. No more ruffles cheddar and sour cream chips for this GP lady, oh how I miss them...

That every day, someone, somewhere is having their worst day. Having an invisible and sometimes debilitating chronic illness has taught me a very focused empathy. I am better about not assuming that anyone who looks ok is ok. I've also learned not to procrastinate. If I have energy and capacity to do something, I do it (of course that has to be balanced with not overdoing it). Lastly, I've gotten really good at judging how long it will take me to do something, whether it's make food, take a shower, get dressed. I think this is because my days are so measured out, I am so deeply aware of the energy and time it is taking me to do anything, so it seems I've internalized a little stop watch. Take Reglan....tick tick tick, got enough time/energy to make pudding for later, then it will be time to rest and have some lunch....tick tick tick....

Howdy fellow "zebra". I have EDS too. I guess there's room for interpretation in the tilt table test, but in what you're reporting, it sounds like they are saying they ruled out POTS or NCS because you didn't have SUSTAINED abnormalities...e.g. your the "spike" was in your heart rate or your blood pressure? My understanding from the papers I've read on POTS is that the criteria is a >30 bpm increase from supine to upright is what they look for. In my tilt table tests, they took min and max and if it was over 30, they called it POTS. I guess the criteria for NCS was a little squishier, my bp did horrible things - my diastolic dropped to 35, my heart rate fell, and I started to pass out.So that all said, I still have discovered that even with those "positive" tilt table tests, I need to find someone to further explore what's up with me autonomically. I've had two tilt table tests, the one that showed "neurally mediated syncope" in 2010 and another in 2013 which was interpretted as providing "evidence of an exaggerated postural tachycardia" (supine 66 bpm to upright 111 bpm). Both were co-signed by the famous autonomic neurologist who heads up this lab/center. And yet, when I went to see a fellow in his practice for follow up on the 2013 test and to talk about my increasing autonomic symptoms, the fellow explained (at length, and vehemently) why she felt my tilt table test results were actually normal. The fellow then declared me "healthy", disregarding my concerns that I had recently developed gastroparesis, stopped sweating in response to heat, and was starting to have urinary frequency. Needless to say, I do not see that fellow anymore. She blew it and wild horses couldn't drag me back to that clinic. However, because I am worried that my autonomic symptoms keep piling up, I do want to see someone to find a cause. If it were just one thing, I'd be willing to wear the "idiopathic" label, but it's not and it's a little scary. Right now, there is a local doc I found listed in the directory here and about whom I've heard good things. I just need to get my primary care to write a referral since her office only takes physician referral patients. I actually might have a way to do this without burdening my primary care (who has been amazing but who I've had to lean on for accommodation paperwork, parking permit paper work, paratransit paperwork, and upcoming disability paperwork so I want to give the guy a break!). I'm about to see a nephrologist (tomorrow) for the urinary symptoms and if he thinks this is also autonomic, I might ask him to write the referral.

Driving is tough for me now too, riding isn't great but at least I don't have to worry that feeling poorly as a passenger is going to get someone hurt or killed. I have migraines too - as a passenger, if light is pouring in right into my eye - or worse - strobing in, I can put on my ridiculously oversized visor that I keep in the car for just this reason, pull it way down over my already very dark very large sunglasses, and block out as much of the window as possible with the visor. I can take the time to fiddle with the in car mechanisms too. I can do some of this as the driver, but reaching up for this thing and down for that while I'm driving accelerates the feeling bad. It's likely to end with me feeling extra awful and "adrenaliney" (pounding/rapid heart rate and whatever feels like going with it that day), which wears off to nauseous and shaky, so it's often a toss up whether it's worth it to try to take steps to address things like light while driving, or to just put up with it. I have noticed that whether I am a passenger or a driver in a car, some cars have a seating set up that seems to make my POTS worse in a passive, sneaky way. It's not easy for me to identify, the dysautonomia symptoms are so like the boiling frog story, you know? They often come on gradually enough that I don't always realize what's up until I'm on full boil, so to speak. I've passed out as a passenger in my husband's car before realizing I had to take countermeasures. While my BP sitting can be just terrible on a bad day, usually if I'm sitting and have been sitting stably for a while, I'm not at risk for passing out. But that's sitting on a device made for me shaped people. The seats in my husband's car? Not so much. My husband's car has "sport" seats. I hate them. The seat pan is long and deep, and the back of the seat curves way in where it meets the seat pan, so these seats are essentially built for a sway backed giant man (man because the depth of the seat makes for an unpleasant bolstering/bounding of lady-shaped hips if you're a normal size 6 or up). I also have a connective tissue disease, and these seats really strain my lower back, sacral area, pelvis, and hips - this was relatively easy to determine when I'd go to stand up and everything was out of whack, or we'd go over a pothole and I'd have to spend a day on the couch with hot and cold packs and braces just to get my pelvic ligaments and tendons to calm down. Having had that one syncopal episode in my husband's car as a passenger, and having gotten out like a drunken sailor after longer car rides, I am pretty sure these seats also contribute to a lot of blood pooling too. My own little mid-2000s civic with it's totally flat, not terribly "long" seats is much easier on me. Two things I do now to help with the large man-sized "sport seat" effects on me: - I wear a hip brace when I'm in the car for long periods now. - I use pillows, one in the seat pan and one behind my back. This makes for a less long, less deep seat which fits my smaller, female body better....and I think it helps the pooling issue. Next step is to try compression hose, which I will save for road trips because in general I do not tolerate the hose.

Lots of PVCs, some in short runs, some PACs. I think that's what showed up on my 24 hour monitor last year. They seem to go in waves, like for a month or so I'll have lots of them then they calm down. The cardiologist I was seeing told me my heart "probably" does this all the time and that it's not abnormal and that I must be "very sensitive" and "hyperaware" of each skipped beat. I wasn't sure how to answer the 2nd question above. I've had plenty of syncope, some with asystole. I don't think it's "from" an arrhythmia. The folks who did my tilt table test didn't mention any arrhythmias even on the test where I got syncopal. In general though, I've haven't been wearing monitoring when faints happen, at least not at the start. I sometimes end up covered in wires (PICC line placement gone bad...)

Yep. Just had them bad the other day. I get livid red patches on my chest and neck, sometimes they are itchy. I'm told they can be very sharply demarcated. I sometimes get them outside of a post shower context, like when I'm hot or under orthostatic stress for whatever reason (upright and talking too long, overheated, underhydrated). I've had coworkers point them out from across the room. After showers, I also have something that looks less livid, not itchy, but pink-red and splotchy on the upper, inner sides of my knees, extending a little up my thigh. This area is where I had a tendency to get a petechial rash for several months in a row some years back (a mystery what caused that, never did figure it out). I wonder if there's something up with the capillaries in that area. I'm not carrying a lot of extra weight, so I don't think it's that things are really rubbing together hard there. So that's it for my post shower red spots. I do have a fairly large number of contact allergies, although the few tests I've had for mast cell issues did not support that as a diagnosis.