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Everything posted by mkoven

  1. I make sure to do my regular tricks more aggressively. So I wear extra compression, eat extra salt, drink more fluid, etc.
  2. I've heard it can be associated with some types of cardiac hypertrophy? Not sure. I think mine is around 65%. I've also been told my circulation is hyperkinetic-- that my blood travels too fast.
  3. For what it's worth, I stayed on my meds at Cleveland (florinef and midodrine). Of course this affected results. But I still had a positive tilt and gave them data they could work with. But I believe Vanderbilt wants you off everything. Keep calling. Some meds take longer than others to wean off.
  4. ans stuff in eds seems to have both a vascular and often some issues at cranial-cervical junction. this appears to be a huge issue of controversy, but many edsers have either laxity where the head and neck meet that can impinge on the brainstem, or chiari, or tethered cord. in my case, I probably pool abnormally, but my eds geneticist thinks I developed ans issues when I did because over time the cranial-cervical instability worsened, leading to more overgrowth of a bone at the top of my spine (odontoid) that puts pressure on my brainstem, esp if I don't keep my head up and back. That may not
  5. this is why it's important to see an experienced geneticist, who sees a lot of hereditary connective tissue disorders. I have some version of eds. I'm short and chubby. But my eds geneticist pointed out, as no one else had, that I have some "marfanoid proportions," in that I have a disproportionately large wingspan and upper body. but tall and thin I ain't-- at 5'3" (on a good day) and a weight I won't quote! It is important to get these things sorted out, as the risks with the different disorders aren't the same. Although the aorta may be an issue in eds, esp. vascular, it almost always is in
  6. cardiac rehab helped me get back into exercise. i can now exercise a reasonable amount. I wear a hr monitor and try to keep it under 145.
  7. yup-- using legs, butt, and abs helps me a lot. I used to do pilates, and will also brace my ab muscles which helps get some blood up to my upper body. Walking also helps.
  8. I take ibuprofen with florinef with no problem, but then florinef itself doesn't cause me headaches, so I don't have to take ibuprofen regularly.
  9. I get chest pain from being upright even when I'm not especially tachy, so in my case the rate doesn't explain it. I got a bad bout the other night after standing in line-- but again I wasn't really tachy. Not sure what my bp was doing. It's hard to understand symptoms when my numbers look okay. It started again last night when I was sitting still too long--- and putting my feet up relieved it-- so I'm sure it's part of my orthostatic intolerance. Again, I wasn't tachy. What helps me is all the usual--florinef, midodrine, stockings, avoiding static postures, and I also take a small dose of nor
  10. I've recently learned that I have a number of upper cervical/brainstem issues that could either cause or exacerbate ans stuff. I have a small chiari (herniation of cerebellum into neck), instability of head on neck, and pannus overgrowth on odontoid (second vertebra?) that pinches brainstem, esp when I look down. All of these issues are eds related, but years of bad, head-forward posture have exacerbated. My head/neck pains and ans symptoms are improved with a neck brace and exercises so that I can keep my head up and back. My geneticist actually thinks that part of the reason so many edsers
  11. since you tolerate nitroglycerin, one possibility might be for your docs to rx you a nitro patch--it would give you a slow steady dose, and might prevent attacks. I think you're not supposed to wear it 24/7, or you could become tolerant. It didn't work for me, and just gave me a headache and made me tachy. but then ntg doesn't work for me either.
  12. I would consult a neurologist who is really expert in dysautonomia. Your symptoms could come from any number of problems. Too often, weird symptoms get chalked up to migraine. I was told I was having silent migraines, and put on some potentially dangerous meds, when most of my weird neuro symptoms are from chiari and cranial instability compressing my brainstem. My symptoms were a lot like yours-- nausea, vertigo, intermittent numbness/weakness. But now I notice my symptoms are really mechanical-- I trigger them with head/neck movement, consistent with instability/compression. I'm not ready f
  13. I think this is probably confirmation that you are having vasospasms/prinzmetal, but that the spasms aren't severe enough to change your ekg? I feel worse on nitro, but ((knock on wood)) feel better on my norvasc- midodrine-florinef combo. I think in my case I spasm to counteract excessive dilation--maybe your ratio of constriction /dilation is somewhat different. It's great that the nitro works for you. There are a couple other people here with spasms. I can't remember who it was, but someone else who takes florinef for pots and cardizem for spasm. It's a tricky balance. When I tried to incre
  14. I think 100mgs is the same as .1, which is the standard starting dose. (mil stands for a thousand, right? so 100 is one tenth of that?) I take less than that, .075, or 3/4 of a .1 tablet. But most folks take a whole pill. I would check with your pharmacist to make sure.
  15. I've had a drooping eyelid since 2003, when I first started to get weird. I believe it's triggered by my brainstem compression-- it gets worse when all my other chiari symptoms worsen.
  16. florinef is a wonder drug for me. in my case it started helping almost immediately. initially i felt pretty wound up on it (not in a good way). I either got used to it or it stopped bothering me. I take .075 in the morning. I also take midodrine which was not enough on its own. I took neurontin for a while after back surgery. I was told there would be no side effects stopping it-- it was AWFUL. Won't touch that stuff. I have done poorly on other anti-seizure meds too (keppra, zonegran), also prescribed for headaches or neuropathic pain.
  17. typically with prinzmetal's beta-blockers are contra-indicated. but my new ep said that his last pots/prinzmetal patient did well on a combo alpha-beta blocker. keep us posted!
  18. I do. I teach/research at a university. i have some control over my schedule, but it's definitely full-time. It's just I can decide when to put in those hours--except for teaching. I teach sitting and have a recliner in my office. i have had bouts when i was off.
  19. I have pots/nmh and have had a pretty thorough workup, including cath, following an abnormal chemical stress test. My arteries were clean. I also have a presumptive diagnosis of prinzmetal/vasospasm, though that was a hard diagnosis to get. I'm on florinef and midodrine for pots/nmh, but also a low dose of norvasc (2.5) for vasospasms. I have to say that the combo works for me-- at least for now. My current cadrio/ep said he's seen some of the worst cases of prinzmetal in pots patients. it does take a doctor who is willing to think outside the box, as it may seem that the treatments for pots
  20. I find I'm intolerant of both heat and cold-- at temperatures that others find acceptable. In my case, some of this is ans, some of it is hormones, as there are times of the month when this is much more pronounced. After I ovulate, and before and during my period I do seem to get hotflashes (I'm 42). They are triggered by the typical things (exercise, standing, being in a warm room), but then my body can't shut the sweating off. I also get cold flashes, and am freezing quite easily, needing layer upon layer, when no one else is particularly cold. I have noticed that my hr seems to correlate wi
  21. what's your threshold ? after how long in the air do you know you'll have trouble?
  22. I flew for the first time in five years this weekend and was very concerned about how it would affect my ans symptoms. I was completely stable. It was a short hour-long flight, but it gives me some confidence for trying something longer. I drank a lot and wore mega-compression, to be safe. But I'm thrilled.
  23. HI Nina, Sorry to hear about all the yuck. I'm also not sure a rheumatologist is the way to go. If it is connected at all to your collagen issues, then a good geneticist, like Francomano, may have some ideas. I'm biased, as I haven't had luck with the rheum specialty. In the interim, can you see a really good body worker? I've had pains in the past that felt like organ-pain, but were myofascial-joint stuff gone crazy. I'd of course only see someone really gentle and really gifted.
  24. i don't have a fibro diagnosis, but could probably get one if I thought it would change what I do. My muscle pain, though, is secondary to eds joint instability, so that's what I focus on-- releasing spasming muscles with massage, strengthening the stabilizers, exercising as much as I tolerate, braces, sleep, treating my apnea, good body mechanics.
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