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mkoven

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About mkoven

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  • Birthday 12/23/1966

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    Female
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    Central Illinois

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  1. Hello my name is Sam, and I am contacting you because I really liked a few items you spoke on in a discussion thread or two, and was wondering if you could share a few thoughts on your journey.  I have been having chest pain off and on for a year, daily, and just found out recently what it is ( vasospasms).  I started calcium channel blockers, has helped.  One thing I wanted to ask you about, is how has your journey been going with the vasospasms/chest pain, any better?  Have you found any way to reverse the trend?  Look forward to hearing back from you, and hope you have found some relief.

     

    -Sam

     

  2. Hi all, It's been a while since I've posted, as I generally am doing better. I have been on 3/4 of a pill of florinef since 2008, and midodrine 5-7.5 mgs as needed, up to 5 times a day. Here's the deal. I'd been taking the global brand since shire stopped making proamatine. Sadly, it looks like Global is stopping production. My choices are now mylan or Sandoz, as those are what my local pharmacies can get. Reviews? thanks!!!
  3. I have been here since 2oo6. I have had confirmed that I have a connective tissue disorder with abnormalities at the cranio-cervical juncture. I didn't have trouble till late 30s, because it probably took that long for my neck problems to progress. I notice that my symptoms are indeed worse with head position!
  4. Corina, That's wonderful! It's great to hear the difference it has made and how much better you are doing ! I have heard good things about this drug, when other more mainstream drugs aren't working. I haven't heard as much about its use in the US.
  5. I teach and research in a university setting. I've been lucky, as my symptoms didn't really hit till 2006, after I'd been in my job for 8 years. I have had bad spells where I couldn't work, but thankfully, have improved with meds, rehab, neck brace for cranial-cervical instability. There are always many tasks to accomplish, but I have a lot of flexibility about when I accomplish them. Teaching is actually the most physically difficult part, and I often do it seated. I can grade papers and read in a recliner. I don't teach large lectures. Also as I have a unversity population, I don't have to
  6. Hi, It's been a while since I've posted. I've generally been relatively stable for a couple years now. I'm planning to fly to Europe this summer for work and play, and have some concerns about the transatlantic flight. I've flown up to 4.5 hours without too many problems-- some issues during take off and landing, mild tachycardia at altitude, and just feeling a little drunk. But nothing that was serious or that didn't resolve relatively quickly. I'm a little concerned about the longer time in the air, as I know some of you are okay for short flights, and less as the flight lengthens. Here are
  7. For me, premesntrual hormones are a huge insomnia trigger. As I get older, premenstrual can last two weeks! Right now I've been taking lunesta, as it's supposed to not only put but keep you asleep. Not perfect, but a help. It does leave me mentally fuzzy. I seem to have more problems with sleep maintenance. In the past klonopin or ativan helped, but most docs will not rx for more than brief periods. When I was wired on high doses of prednisone, they were a big help. Melatonin helps me, but seems to mess with my blood sugar-- I wake up shaky and starving.
  8. If you search on aorta, you will pull up a series of posts two years ago on a similar topic. I have some eds-type disorder. I was disconcerted as it seemed like my aorta had grown a lot in one year. At the end of the day, people were measuring it at different places, and getting different numbers. I assembled the actual films of my past 3 echos (not just the reports) and got them looked at by a cardiologist who specializes in connective tissue disorders. In my case, he was able to closely compare to see that there really was no change. It sounds like you should maybe try to do the same. Cardio
  9. sorry i haven't been posting much, but wanted to chime in. i also have vasospastic angina as a probable add on to my dysautonomia. i encountered a lot of resistance to get it worked up and treated. we are all different, but i personally find tht anything that worsens pots, is more likely to trigger chest pain. i need a very delicate balance between cosntriction and dilation. stockings, hydration, in addition to midodrine and florinef help keep me there. but i also take a low dose calcium channel blocker to prevent overconstriction--2.5 amlodipine/norvasc. I've successfully avoided a major epis
  10. I did a similar chronic pain rehab program at RIC in Chicago before my eds diagnosis, and before POTS kicked in. It was helpful in teaching me pacing techniques and some new ways of thinking when I feel really bad. The med approach at RIC was more flexible. They said they wanted us off a lot of meds, but it was actually more flexible. IT was outpatient. I was glad to have done it, but now with my eds and POTS diagnosis don't know how it would have gone. They sort of suspected some form of hypermobility, as I kept getting new injuries, different from the ones I'd come in with!
  11. florinef was a life changer for me. really helps. i hate prednisone, but florinef doesn't affect me in the same way. I take 3/4 of a pill daily in the morning and have for almost three years. My hands and feet get a little puffy on it, but I really don't mind. My bp stays pretty stable on it-- usually around 115/75. Before, it was all over the map. I add extra fluid and salt if I'm having a rough day, but otherwise don't particularly salt or fluid load, other than to make sure I always do have fluids relatively nearby. I'm not cured, but now function at about 85%. I think florinef helped more
  12. Thanks, you guys, for the validation. It's disappointing, as I'd more or less liked him till this point. I see my gynecologist in about ten days and can see how willing she is to treat hormonally induced insomnia. I continue to use my cpap, and am glad to have it. I tolerate it okay, and it has helped. I have apnea and feel awful when it's not treated. I guess now I know that my current issues are not from the apnea. But if you google menopause and insomnia, it's not an unheard of connection! Geez! Why reach for the psych diagnoses? Perimenopause can have psych effects, but it's not a psycholo
  13. I've posted here in the past several months about my recent struggles with insomnia. I'm feeling potentially mad at my sleep doctor for how he wrote up the report on my sleep study that I've just received. I can't tell if I'm being paranoid or if I am being written off as a psych case. Should I have a conversation with this doctor, or based on his written report, conclude that he won't get it. Recall that I am in a small town, and it's hard to switch doctors, esp in a small specialty. My problems with insomnia are recent-- the past year or so, esp past 6 months. So my whole life, with whatever
  14. I know it's lousy to have so many things feel wrong at once. I actually find the eds diagnosis really helpful, as it is the underlying explanation for almost all my issues. In my case eds seems to underlie POTS through the cranial cervical issues as well as stretchy veins. Knock on wood, I am generally doing okay these days. But that's only because I've found good docs and physical therapists to help stabilize joints (including my head/neck) and POTS. I see Dr. Francomano once a year, and she is a godsend. She picked up on all kinds of little things. I also get a yearly echocardiogram to keep
  15. I would check out ednf.org. there are many types of eds. and even if eds affects your vasculature, that doesn't mean you have vascular eds. according to the main eds geneticists, there is no such thing as benign hypermobility. regardless, i would see a geneticist. I see Claire Francomano in Baltimore and she is wonderful. she thinks i have some atypical form of eds that doesn't fit perfectly in given categories. since she is also a researcher, she knows a lot about the blurriness of the categories. good luck!
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