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Everything posted by ellen

  1. 1. Probably never, since I have had POTS for so long. (Is that "0" ?) 2. 2: florinef and midodrine 3. 120 minutes 4. 14
  2. Jenwic, I use Natural Instincts every two weeks with no trouble. I only touch up the roots to avoid too much time with my hands over my head.
  3. Several posters have asked for doctor recommendations, and I don't see any on the Dinet website list from Arizona. I have been seeing Dr. Darren Peress in Tucson, AZ for several years and was impressed at my last visit when he said he talked to Blair Grubb about POTS. He has shown a willingness to listen and try different approaches.
  4. Yes I have coat hanger pain but when I described it to my old PCP he had never heard of it and dismissed my complaint as the most common complaint he hears "from people your age" (50). But I've had it since my thirties. I got a new PCP who referred me to a rheumatologist, and she told me I have degenerative disc arthritis in my neck. I take Tylenol arthritis formula.
  5. Willows, that's encouraging news about the new doctor. Hope all goes well with the tests and you get to the bottom of Mike's problems (and yours as well!). -ellen
  6. Thankyou all for your response- Masumeh, please let us know how you do on the mestinon, especially if it helps with the other POTS symptom. Pat-that is a very interesting article!
  7. My EP wants to try mestinon, but can someone tell me specifically how it affects them, not just "helps with my symptoms". It has a risk of Cholinergic crisis, (can result in death), which scares me. How great is this medication, and exactly how does it improve symptoms?
  8. Yes, Pat is so right. I'm surprised the lady doc called for a pillow under Mike's head. I had a similar faint in a doctor's office and they insisted I sit in a wheelchair; as I tried to put my head down to increase the blood flow someone forced me to sit upright and I went OUT completely. I heard the poor doctor cry, "Call 9-1-1!" I ALWAYS ask to lie supine when having blood drawn. Feet elevated is even better! I hope Mike is getting the medical care he needs.
  9. Like Tearose, I like my Polar watch. My battery ran down after 2 years, I shopped around and finally took it to Batteries Plus, for a small fee, maybe 12 dollars. They don't guarantee it's waterproof, but at that price, I am very happy with it.
  10. !!YES!! I had to respond to this one post- usually it takes too much energy to post (I admire all you who do it so often), because fatigue is my main complaint with this illness. I would love to be able to work, but I have to SAVE my energy for the basic necessities like making dinner doing laundry, paying bills. I find I have to BUDGET my time and lower my expectations, so at the end of the day I have accomplished at least the minimum. You have to find a balance between "coddling" yourself and being overburdened, both of which can make the condition worse. I find I have to say "I can't" to people who ask me to do something extra for Them, and say "I CAN" when it comes to doing something for myself, and NOT feel guilty!
  11. Thanks Gayla for the pix- they brightened my day !
  12. My teenage son used it (about half as often as he should have) with remarkable results. It is well worth the monthly blood test, however he had terribly dry skin initially. Big dry flakes. But his acne was so bad, he stuck it out and had CLEAR skin for several years. It was like a miracle.
  13. I wasn't diagnosed until 50 but I first developed serious symptoms at 35, docs just couldn't give it a name.
  14. NO SWEAT! Literally. I don't sweat unless I'm faint (clammy cold sweat) or interestingly, during my tilt table test. So I CAN sweat, but it's unusual.
  15. Meg and Deb, you are so right. I have been miserable trying to "get better"! I just took an extra dose of florinef and feel so much more normal.
  16. Yes thankyou Deb! Your post is a big encouragement. Are you completely off meds?
  17. OK, after nine years of .1 mg, wounds don't heal as quickly. Carbohydrate intolerance- I can't eat alot of sweets :. I want to get off florinef because of the long term side effects, so I asked my cardio EP to switch me to a SSRI instead. So with my doctor's approval, I have weened myself down to !/2 a pill, now 1/4 pill a day and I'm so weak, pre-syncope, low blood pressure (70/45) and TIRED . Husband said just go back to the 1/2 dose florinef again, and today I feel energy almost like a normal person (ok maybe not That great, but close!). Also my cardio EP gave me an rx for Zoloft, which made me so nauseous. It has been a few months now and I don't feel any improvement. In fact, I cut that down to 1/4 of a pill and the nausea subsided, but I still feel so much worse. I'm afraid I'm going to have to go back to florinef exclusively, but the hidden side effects concern me.
  18. Ernie, have you had your test yet, (or did I miss it)? we're hoping you got some positive results.
  19. Great topic- I do Curves three times a week, walk the dog for 20 minutes each day and I just joined a tap dancing class for women over 50. (I love it! Just my speed.) I used to jog - can't do that anymore.
  20. This is a good question. My cardiac EP prescribed 50 mg of ZOLOFT for me last week, because I asked if I could possibly switch from Florinef to an SSRI. He didn't discuss any of the differences, just gave me the Rx. It has been one week and I have been nauseous, fatiqued and my blood pressure is low. At an appointment with my rheumatologist yesterday, she just remarked that 50 mg is quite high to start out with, especially for someone who is sensitive. I have been cutting them in half for a few days because I'm so sick. I don't know if I can keep this up for 5 more weeks (until my next appt with the EP). This would be a great study for the NIH to fund- which SSRI has the greatest improvement in POTS symptoms.
  21. Mary, I just posted my TTT results this week- I went from 70 to 111 bpm -that's an increase of 41 within ten minutes. I believe the "rule" for POTS is an increase of at least 30 within ten minutes, and it looks like you just barely missed that. But you might have been having a "good" day. BUT, ( the good news is) I also left my doc's office with a prescription for an anti depressant! I actually asked about it because it has been used OFF-LABEL to treat POTS. He agreed to let me try it for 6 weeks and see if it increases my energy. We need to get over the stigma associated with mental health, and do what helps improve treatment. Don't give up - we have all been through the self doubt, because this illness is so difficult to diagnose, and the medical community is just becoming aware of it. With the help of DINET and forums like this, doctors and patients will improve our understanding and treatment of dysautonomia. I hope you feel better!
  22. Morgan, hope all goes well today! -ellen
  23. ellen


    Tearose- good for you! That is so great to have that kind of improvement with such a small change. I have gone caffeine free for several months without much change. Now I'm back to decaf tea every morning (4mg caffeine) and all is the same.
  24. With the encouragement of all on this forum I took the TTT last week my cardiac EP ordered. It was not too umcomfortable, as if I had to stand for 20 minutes . Well, I did not faint, but my heart rate did increase from 70 to 111, which means I do (still) have POTS. I have had it since 1991, but I no longer have low blood pressure (!!) and I don't faint easily anymore. So be encouraged, it does get better with age . I am going to wean off the florinef I have been taking for 9 years since blood pressure is no longer a problem. He agreed to try me on an SSRI since fatigue and brain fog are my main complaints, and started me on 50 mg Zoloft. I'm so excited. I understand it may take a few weeks to work, but at least I have a hope of some improvement. I will keep you posted. Hopefully, Ellen
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