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Everything posted by mkoven

  1. i have both cranial-cervical instability and some stenosis, enough that when I let me head go even a little forward, I'm actually pinching either my brainstem and/or my spinal cord. Specifically, I have a buildup of tissue on the odontoid from the instability. Not all neurosurgeons look for the cci, but it's common in eds. in some cases, dysautonomia is actually a consequence of pressure on the brainstem, as it is the brainstem that regulates much of the ans. this is a huge area of research and controversy in eds. some folks actually get a surgery to fuse the head to the neck. I'm in no rush t
  2. I have a range of neck issues and an eds-like disorder. I highly recommend Francomano. She sent me to a local neurosurgeon who put me in a hard collar. I've been wearing an aspen vista collar for almost a year, and it REALLY HELPS headaches, and my ans issues. It's hot in the summer, unattractive, and makes people stare, but the benefits are well worth it. I plan to avoid surgery as long as possible if not forever. I now have a scarf collection to make it a little less "in your face."
  3. I also get weird allergic rashes after too much intense sun. it usually is okay in the midwest, but when i've gone somewhere with intense sun (Bahamas), it was BAD. Sounds like your doc is testing for mastocytosis.
  4. It's hard to tell what's causing what, but I do know that when I'm doing better and being able to exercise go together. I did cardiac rehab, and it helped. At my worst, exercise made my bp drop, gave me chest pain, etc. I don't think pushing through it would have been a good idea. I had to find ways to gradually increase my intensity and duration. For me that meant timing meds, being hydrated, compression, and finding which exercises would trigger me less. For me, it was walking on an incline. Biking made my bp drop. It helped to be supervised, so that I would feel safe. But I also freaked out
  5. just to back up what other have said, i've been told that they are more of an annoyance than anything else in an otherwise healthy heart. My cardiologist told me that unless 1/3 of all my beats were like this, she wouldn't treat me for this, as the treatment and its side effects are worse than thee original problem. At times, I get up to 10 a minute, or one every 6-10 beats. They are worse around my period or if I'm worn down. MAgnesium helps some people. With that number, you are getting about 100/hour, or 2/minute?
  6. i've seen many allergists and none of them has been willing to connect my reactions to ans or homonal issues. frustrating to have one's problems spilt up among specialties, with no one looking at how it's all connected.
  7. I've really only had consistently symptomatic POTS since 2006, and bad allergy stuff since then. But I've had allergies and probably some CU since I was little. I remember when I was little that my legs used to itch like crazy when I'd walk fast, and a couple other totally random turn bright red/itch all over episodes in my teens.
  8. like all things, they get worse or come on as I get closer to my period. my doc believes me but what are we to do, as i refuse the bcp. i just keep benadryl, cortisone cream, and my epipen nearby. sigh. i guess weird dilation/constriction of vessels doesn't help, as i hear mine is brouhgt on by mast cells reacting to temp changes that trigger blood vessel changes that trigger reaction???
  9. for the past year, i've had this. usually kicks in in the week before my period. i'll feel my head itch, then i'll get very itchy/stingy red splotches all over my arms and then legs. Lasts a little over an hour, if I pop two benadryl and slather my arms with cortisone cream. really annoying,as I have to be still till it passes, as any movement, heat, friction (even clothes against skin) exacerbates. I already take allegra. anyone else have this? i'm otherwise allergy prone, but this seems internally/hormonally generated.
  10. count me in. look at my signature line. i think there's definitely a link for me. i've been wearing a neck brace for a year, and my ans issues have been a lot better. my eds geneticist thinks my ans symptoms started when the cranial-cervical instability and pannus on the odontoid reached a critical point. If I look down, move my head too fast, or have something push my head forward, I feel like I'll faint, and get some funky heartbeats. i don't want surgery, but will gladly put up with a neck brace. my awful headaches, previously diagnosed as migraines are also 90% better since being in the co
  11. Hi Nina, I'm so sorry and sad to hear about all this %$# you've got going on. Big hugs!
  12. just wanted to add that those who are interested in cardiac rehab should do a search, as there have been posts about this. I was in bad shape two years ago and was rxed rehab. At first I freaked everyone out, as my bp would plummet when I'd exert, leading everyone to suspect some serious heart disease. After getting cleared for that, I started rehab again. It was trial and error. I learned that I can't bike, without dropping my bp, but I can walk on an incline. The extra squeezing in my calves is key--something I don't get on the bike. If it's a bad day, I wear extra compression (40-50, plus a
  13. http://www.medpagetoday.com/Cardiology/Hypertension/20019 What are we to make of this?
  14. I have stretches where I get them a lot-- as many as 10 a minute. I get them around my period and if I'm way overtired. They are unpleasant, to say the least. But I've been told that it's better to not treat them, and just know that they are an unpleasant annoyance. I take magnesium, which may help. Hormones are my biggest trigger.
  15. such wonderful news, Ernie! Thanks for sharing and giving people your example as hope!!
  16. to my surprise, it evened out my bp spikes. for me, i was swinging high to compensate for swinging low. once i no longer had the dips, the spikes stopped. My bp has been pretty consistent on it--between 105/70 to 125/75. Before i was all over-- from 70/30- to 170/100.
  17. I also have had awful reactions to prednisone, but tolerate florinef (3/4 of a pill) quite well. I actually haven't gained much weight after almost two years on it. I feel like I can actually benefit from salt and fluids on it, whereas before I would pee it all out. It has really helped and pulled me out of a really bad place.
  18. neti pot, with water, salt, and yes--i'm not kidding--a milliliter of baby shampoo. really works for me and has saved me from antibiotics.
  19. I have to tell myself that I'm (fortunately) very bad at predicting the future. Things that I was really afraid of happening never have. (My joints were so bad a couple years ago, and so was my ans stuff that I could barely make it down the hall. I feared I might be in a wheelchair all the time. But now I can walk two miles and be okay, and only rarely have a wheelchair in the car as a backup.) And things that I could never have imagined have happened.
  20. yes! but i think you knew that. new symptoms need attention, even if it's frustrating to figure it all out with us.
  21. I did a similar program at RIC in Chicago for pain, before my ans symptoms. It was helpful at the time. I don't know how they would have adapted it for POTS. It did teach me to manage my pain better and still try to lead a semi-normal life. Mayo actually recommends RIC's program as the most similar to theirs.
  22. Great news! Does that mean you're off procrit? Do you have to inject yourself? Glad to hear things have turned around for you.
  23. just wanted to give sympathy. i'm herniated throughout my lower back and am trying to avoid more surgery. like you, i'm in pt, and will have to consider injections, as i have weakness in my legs. standing is better than sitting, but indeed not pots friendly. walking is best, but i can't do my job while walking! getting off now to do another mckenzie pressup.
  24. I second everyone else's advice. I also recommend brainstorming specific recommendations that would be helpful. Generally, the disability offices like things to be concrete-- like amounts of time to spend on tests, ability to use a laptop, etc. Much of that may not apply, but still. I'm sort of on the other side-- faculty at a university. It's pretty much up to me to accommodate myself, but I do let my higher ups know my general limitations, and about major flares. At the end of the day, I have to cover my classes, even when I feel lousy. I've been able to this year, but it's been hard at time
  25. For me, coughing makes my mouth go numb and tingly--same thing-- increase in pressure when things are already tight at the foramen magnum from chiari, and i guess some pressure on cranial nerves. Before my diagnosis, and before things got worse, my mouth would go numb when I'd blow up a balloon. Fortunately, coughing doesn't trigger POTS for me, but will give me a headache, double vision, and, again, the tingling mouth.
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