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Everything posted by mkoven

  1. 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!!!
  2. 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!
  3. 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.
  4. 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
  5. 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
  6. 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.
  7. 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
  8. 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
  9. 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!
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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!
  15. From what I understand, part of the issue is whether they return the torn part, or try to repair it. Recovery is longer with repair. I think some of the docs, like Dr.Clohisy at Barnes, look to make sure that there is no underlying malalignment of the bones that would predispose you to tears. If so, they like to reposition bones, and that's a big surgery. And if you add any connective tissue instability, it makes the whole thing trickier, esp as he might have to be on crutches for the hip, which would be hard on shoulders!
  16. I have not had this test but may have labral tears. Make sure you get multiple opinions and go to the top people. Labral repairs on hips are relatively new. In the context of a connective tissue disorder, it becomes even trickier. I think there are only five surgeons in the country people really trust to get this right.I saw one of them at Barnes, there's someone in NYC, and someone else in Colorado.
  17. When I started taking florinef, my doc told me that supplementing magnesium was important and would also be a safer way to keep potassium up, rather than take potassium directly. All those minerals work in concert, I guess. My then cardio recommended I boost mg higher, while I was having a lot of pvcs/pacs. She told me that she was comfortable with my going up to 2,000, if my bowels could handle it. My eds doctor also thought that, within limits, a lot of edsers need extra mg. I take magnesium glycinate that doesn't give me diarrhea. My serum and intra-cellular mg are always mid-range. BTW, fr
  18. Hard to know what to make of this. I have been on florinef for almost three years, and could not function without it. I was in awful shape before I started,could not sit up, walk around, exercise, work and now I function almost normally. The effect was pretty immediate after I started taking it. I am 44 and do wonder about long-term effects. I have a yearly echocardiogram, which has not changed significantly in 3 years. I do not go out of my way to salt load, but do use more salt if I'm feeling potsier. I take a LOT of magnesium (1600mgs/day, under doctor's supervision), which also balances ou
  19. Just to add, when I say it gave me back my life, I mean I went from having to stay reclined most of the time, to going back to work full-time, and working out an hour a day. This doesn't mean my life is "normal," but I can do most of what I want to do. Before florinef, I was in pretty bad shape. I was reluctant, because I feared it would be like prednisone, which I do NOT tolerate. It really isn't. Everyone is different, but given the potential benefit, it is probably worth a try.
  20. I'm also very sensitive to meds. Florinef was a miracle for me. I hesitated, but started feeling instantly better on it. I recommend starting with no more than a quarter of a pill, taken in the morning. Give it a week. If you feel somewhat better, but not better enough, keep adding a quarter pill. I take 3/4 of a pill and have for 2.5 years. It really gave me back my life. Initially I might have felt a little bit of a rush an hour after taking, but not anymore. My blood pressure is much more stable on it-- usually 115/75, instead of all over the map. I take magnesium, which indirectly keeps my
  21. Hi, I haven't been posting much lately, but I am someone whose symptoms have included chest pain. I had a really hard time getting that part of the problem treated and addressed, as it is not "textbook." I even got an angiogram (normal) a couple years ago. I take midodrine, florinef, and norvasc, in addition to wearing compression, a neck brace for cranial-cervical instability that is probably the cause for my ans issues. I have found that whatever worsens POTS can provoke chest pain. The best theory anyone has proposed is that my blood vessels freak out when I'm having ans symptoms and overc
  22. Thanks again, you guys! Brief update. I probably slept 5-6 hours last night, which felt downright luxurious. I tried a tiny bit of melatonin (.5). It gave me a weird head rush and some stomach weirdness, but not longlasting. I can't swear that this is what let me sleep, but I am willing to try again. I finally did hear back from my pcp over email, who said that he had called in an ambien rx, but noone had notified me of this. If melatonin doesn't cut it, I will try. I have to go to a conference from Tuesday to Sunday, and really want to be back on a sleeping schedule. Even five hours may be en
  23. Thanks, you guys. I don't think it could be tolerance, as I only get 5 doses of sonata a month, and at half the normal dose. So that is roughly equivalent to half the normal dose, once per week. I have taken three pills this week, but pretty much in vain. The benadryl has just been this week. I had some big hormonal shift last weekend that seemed to precipitate all this. And maybe the time change confused my body. I'm just really losing it. I hate that I'm getting ignored. My headaches, heart racing, pain, mood, and concentration are all getting worse the longer this goes. I don't know if he i
  24. I am at my wits end. I haven't slept more than three hours a night for the past week. I have had some issues in the past and have apnea, but nothing like this. Some of it may be hormonal, as perimenopause progresses. but i'm going nuts. benadryl does nothing-- makes me more tired but doesn;t put me out. my doc gives me 5 5mg pills of sonata per month, but they are not working, and I now only have one pill left for the next three weeks.. he hasn't returned my recent messages about this. i'm sure that he's busy and that for a "normal" person, a week with minimal sleep is not considered a crisis
  25. I've had a terrible problem with sweating under my arms for years-- at least since my 20s. (I'm 43). I'm allergic to anti-perspirants, and can only use deodorants, which means hiding the inevitable stains with the right blazer, overshirt, etc. No pastel colored silk shirts for me! Often I have icy hands and drenched armpits. My spouse tells me he can tell how my day was by the extent of the pit stains! I've also started in on perimenopausal hot flashes, but those are different.
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