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Everything posted by mkoven

  1. I at times get slow heart rates--as low as 40s while awake. I will feel a tightness in my chest, and sometimes really cold, and just bad. It hasn't happened in a while. My doctors have never been too concerned. It used to happen around my period, or after exertion of some kind. Since wearing a hard neck brace for cervical instability, it happens less. I feel best when my resting heart rate is in the 60s, and I think this probably the most comfortable rate for me.
  2. I use 30-40 on good days. On days when I have to be on my feet more, or around my period, I wear 40-50. I have a pair with and a pair without abdominal compression. When I need it, it helps a lot. Otherwise, it's pretty darn uncomfortable. The 40-50 are much harder to get on and off, and chafe more if they get bunch up. But they definitely make a difference. I feel instantly better with them on, and instantly worse when I take them off. I think mine are juzo and latex free. They do make going to the bathroom a bit of an ordeal.
  3. If you do a search on my posts about a year ago, I talked about my visits with both. They are definitely worth your while. FH is of the opinion that all ans stuff in eds patients is from brainstem compression. This is a little controversial to say the least. But I have to say that I was put in a hard neck brace a year ago that I still wear and it has helped ALL my ans symptoms quite a bit. I have mild chiari, but also instability, with an abnormal clivo-axial angle. If I flex my neck forward, I put pressure on my brainstem. No surgery for me at this point.
  4. I have multiple, small white matter hyperintensities. They appear to be stable across several years. I was told they are non-specific. Not sure where they come from. Until 2008, I had untreated sleep apnea. I've also been told that migraine sufferers tend to have more of these. I'm only 43 and these were found when I was 38 while being scanned for something else, not related to my ans issues.
  5. I know this is something that we've talked about some before. I've heard both that chest pain is part of dysautonomia and not dangerous, and also that it is not typical and should be worked up as potentially dangerous. My personal sense is that my dysautonomia triggers it, and that it, in my case, may not be benign. I can often make it subside by doing ans-friendly maneuvers, like keeping hydrated, compression, lying down/raising my feet. But I've had unrelenting chest pressure, radiating into my left arm, shortness of breath, nausea--i.e. classic angina syhmptoms. I've had a very extensive wo
  6. what a terrible story! I am sadly another person with POTS and recurrent atypical chest pain, that I finally managed to get a cardiologist to recognize my pain could be vasospasms. I am currently on an odd combo of drugs-- florinef, midodrine, and norvasc. I had a completely normal angiogram. I can't tell you how many er trips I had for chest pain. Fortunately, none in 9 mos. My current cardio believes me, and is treating me. My rule of thumb is that everything that helps POTS also helps prevent my vasospasms. I'm lucky in that I haven't yet caused any heart damage. The current plan is that I
  7. I left a message with Dr. Fouad-Tarazi's nurse at the syncope clinic in Cleveland. I haven't seen them in a couple years, but I am technically still a patient. I imagine the withdrawal of midodrine will be an issue for many of her patients, and as a high-volume center, they must be strategizing. Curious to hear what they say.
  8. I take both and believe their effects are synergistic. Florinef is more of a blood volume expander, though it might help constriction a bit. I am considering upping my dose of florinef if i can no longer get midodrine... not sure...i like how fast acting midodrine is.
  9. thought i'd start a new thread, for those of us who are pessimistic about being able to keep getting midodrine. it seems it's iunique as a vasoconstrictor without cns effects. would phenylephrine do something similar? sudafed?
  10. does anyone know what we might do? I also would be devastated. is there some action we might take as individuals, collectively, through our docs, etc.?
  11. I have similar issues and also have seen Henderson. Wearing a hard cervical collar has REALLY helped everything, including POTS. I have eds, retroflexed odontoid, mild chiari, tethered cord.
  12. it's worth a sleep study. I have apnea, and love my cpap. I don't fit the stereotypical image. i'd complained of similar symptoms, but it took doctor number four to order the study. i no longer have nightmares that someone is trying to kill me, have fewer headaches, and lots more energy.
  13. Thanks, Julie. I'm going to Saint Louis to see hip specialists. I'm unstable at si joints, the pubis, and hips (where femur goes into acetabulum.) Can barely walk now, as left leg is so unstable. Trying to avoid surgery, but I've had lots of PT. Willing to try anything short of surgery.
  14. Thanks, Julie. Those actually look like exercises to correct the pelvis (sacroiliac) rather than the hip joint directly. I come out in both places. I think pelvic instability is quite common, hip instability less so.
  15. Hi Julie, Unfortunately your link didn't work. I'd love to know the maneuvers. I pop and slosh. Very disabling, I can't consistently fire my glutes, because everything is so unstable.
  16. I am somewhat hyperflexible, but not extremely. I am some type of connective tissue disorder, possibly atypical hypermobile eds. I injure very easily, and Julie, my hips are driving me NUTS. Constant subluxing. And I've popped and/or injured most joints at some point. Julie, what exercises are you doing for your hips?
  17. don't know if it's the same mechanism, but midodrine lowers my hr. It must be an autonomic reflex.
  18. Hi Kylie, To add to what Crow said, there should be an office on campus , for us, "office of equal opportunity and access." We do have the ADA, Americans with Disabilities Act, which stipulates that employers have to make "reasonable accommodations," But at least for us, there is no extra funding for this. I know how it works for faculty, but not really for students. I guess you would need to find out if ADA applies to you, as an international student on a fellowship. This is something that Harvard's office should help determine, and seems pretty important to figure out. . As I understand, "r
  19. I am also super sensitive to meds and nervous about them. I was reluctant to take florinef, but it has really been a wonder drug for me. I have been on it for 2 years. The info says that because they are talking about it like they would about other steroids-- glucocorticoids. From what I understand, at the doses we take, it is more of a mineral corticoid-- which means its main effect is to make us retain salt and fluid. I tolerate it well, whereas other steroids, like prednisone, I tolerate poorly.
  20. I've been getting middle-of-the-night racing and sweating. Definitely hormonal. I still get my period, but these symptoms kick in worst right before. I also have apnea, which is treated. Before that, I had worse racing. I'd wake up in a panic, and in retrospect I think it was the apnea. I was panicking for lack of air. I would explore both avenues. I have a prn sleeping pill that I take on nights when I CANNOT get back to sleep because I'm wired, for up to 5 times a month, so no risk of getting hooked. I take sonata, which has a short half life.
  21. the thing is it's really impossible to know if you have something treatable like apnea without a sleep study. i thought there was no way i had it. and my husband never noticed it. i'm very grateful to have one health condition that is very treatable and does improve my quality of life. and only a sleep study could capture it. i don't look like the sterotypical apnea patient, which is what took so long for me to be diagnosed.
  22. totally worth it. turns out i do have apnea and have been on cpap for 2 years. it has helped MANY issues. apnea not only makes you feel lousy, it is also really bad for your health. i am less tired, fewer headaches and general aches, fewer odd neuro symptoms, better rested.
  23. i'm really struggling with wacky hormones, which are worsening everything--sleep, mood, temperature regulation. I'm 43 and my periods are still relatively regular, though my cycles run short-- 22 days. I can feel a big crash around ovulation, and then it's rough till day 3 of my period. I actually only feel "normal" about a week out of the month-- the rest of the time I'm premenstrual, or I have my period. Ugh. Fatigue, bad moods, insomnia, pots, hot flashes, ravenous, night sweats, headaches, more joint slippage. I don't want to take hormones or the pill, because of a family history of breast
  24. I'm also worse in the days right before till about day 2, and then I begin to stabilize.
  25. my mris were read as relatively normal (except for herniation/stenosis), till I saw eds and chiari experts. They are few and far between, sadly. the odontoid problem and slight chiari were only picked up last summer. i don't have anyone in-state who is really up on this. my geneticist is Francomano in MD. I've seen Heffez in WI and Henderson in MD as neurosurgeons. they saw somewhat different things, but both agreed I would benefit from wearing a collar. and I do. better than any drug-- though I still take my share of meds.
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