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mkoven

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Posts 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 to have surgery, but the brace has really helped me. Google "retroflexed odontoid" or "basilar invagination." Many of my ans issues, headaches, nausea, vertigo, tinnitus and more stopped when I began wearing the brace. Some people are concerned about atrophying muscles. But honestly, if one is banging around one's brainstem and/or spinal cord, that is a big deal that shouldn't be ignored.

  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. 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 the workers at cardiac rehab, as they'd never seen anyone like me. I keep at it, now doing about 30 minutes on the treadmill per day, between 3-4.5 mph. I'm also on meds, wear compression, and a neck brace. In my case, I think cranial instability has played a big role in my symptoms. (knock on wood) my symptoms are so much better since I started wearing a neck brace. (Thank you to my fab geneticist for looking into this. The cardiologists and endocrinologists who'd treated me before did not look beyond their own specialties to find the cause. I think for a lot of edsers there may be a problem with the cranial-cervical junction that contributes to POTS. )

  4. 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?

  5. 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.

  6. 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???

  7. 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.

  8. 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 collar. I get a mild headache mid-cycle and the first day of my period, but it's bearable, and ibuprofen has been enough. Before the neck brace, I would get horrendous headaches multiple times a week. i think not many are skilled at looking for cranial-cervical anomalies.

    i'm just tired of all the staring and dumb questions about the brace. so i wear a scarf...

  9. 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 corset). My exercise tolerance and ans symptoms have really improved and I think rehab helped. (I also take florinef and wear a neck brace). For now (no jinxing!), the ans symptoms really only bother me around my period. I'm not normal, by any account, but stable and relatively functional. I know we are all different, with different underlying mechanisms, and it would sure be nice to see more published research on this. I had to teach the rehab people, as they'd never had anyone like me before with something other than plain vanilla heart disease.

  10. 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.

  11. 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.

  12. 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.

  13. 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.

  14. 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 times. I always teach in 40-50 level stockings, to minimize my potsiness.

  15. 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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