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Dyspatient

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About Dyspatient

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  1. 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!
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. Oh btw, psychology + computer science = cognitive science!
  7. 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!
  8. 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?
  9. 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?
  10. 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.
  11. 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!
  12. 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).
  13. 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!
  14. 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!
  15. 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.
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