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Everything posted by potsgirl

  1. I have had better periods in the 6 years I've had dysautonomia, but I don't think I was ever 75% better, and that was in the first two years. I've been unable to work for about 6 years, and I certainly have bad periods of time when I hardly ever leave the house. Just got out of a really bad period when I was fainting almost every time I stood up. I'm now on Midodrine, 7.5 mg, but it's not doing much for me and I've lost my appetite and about 10 pounds. Right now, I'm in limbo with my neuro from Mayo. We tried Mestinon, but I couldn' take it. Grrr! I want to go back to work!
  2. What is the 'nasty green' protocol from Texas? Also, when I exercise, I find that my BP goes lower and that my HR stays about the same or also goes lower...? Anyone else?
  3. I get small blood clots on the interior of my fingers/palms that go away in a couple of days. Is that a sign of lupus? Be well, sweetie. Jana
  4. I really like what Alaska wrote.
  5. I would ask the doctor who ordered this TTT for you about your questions. I've had 3 TTT and they've all been in the "Mayo position." I wouldn't think it would have much to do with the numbers, but of course I'm no doctor and can't really say. Please get in touch with your ordering physician and find out what they have to say. My test was also 10 minutes, and I had a dramatic reaction. Others? Hope you get some answers soon! And remember, that was just one test at one period of time. Other factors may have played at part in your response. Cheers, Jana
  6. Hello Everyone, After a really bad spell where I was fainting almost every time I stood up, I tried Midodrine again. 2.5 mg three times per day. After three weeks, I needed to push the dose to 5 mg, three times/day. I lost 10 pounds in 20 days, and unfortunately, I need to gain some weight, not lose anymore. Has anyone else had this problem? I cannot tolerate Florinef, and my doctor at Mayo has told me to cut back to 2.5 again over the weekend to see what happens. I don't want to lose the energy the drug gives me, but the side effects are tough...no appetite, digestion issues, headache, etc. A
  7. Lemons, When I wore my holter monitor I had readings in the 30s and 40s and was in congestive heart failure. I could hardly walk 1/2 a block, and was exhausted all of the time. My doctor talked to me about a pacemaker, which I had put in not long after my diagnosis of bradycardia. It has really helped in keeping my heart rate at 60 and above, and relieved some of the fatigue.
  8. Rich, Good luck in finding an answer with your breathing issues. Kim, I like your thinking. Life is indeed life-threatening for us all. Cheers.
  9. Rich, Do you have to wear oxygen 24/7? What is the nature of your breathing issues? Have you gotten to any doctors that can help you?
  10. I wonder if you would have more luck going to Rochester, MN, where they have the autonomic specialty department. I got in and over a week's time had all of my tests done. It's like they put you on a 'fast-track', especially when they know you're not from there. I went from Tucson, AZ to MN, and it was well worth it. We did fly in, however.
  11. My nose tends to run the majority of the time. Then when I blow it, most of the time I get a bloody nose in my right nostril. I take allergy meds, so I'm not sure what it's connected to.
  12. My problem is that I'm just no hungry, or if I am, nothing sounds good. At that point, I eat a lot of carbs with protein. Do you know how many calories you're eating? You should track that and make sure you're meeting your caloric needs, even if you're not eating the best of foods for a little while. I have to eat 1,650 calories a day or I lose weight, and I really can't afford to lose anymore.
  13. I don't think anyone can tell you for sure - except the Mayo Clinic themselves, but I know there is quite a wait time to see a neurologist unless it's a major issue. If you have to travel to get there, you do have the option of telling them that you need all the tests scheduled in the same week if possible. Which Mayo are you going to?
  14. Hi Jen, I'm glad you brought this up, since I'm also dealing with this issue right now. I've had seizures then fell and hit my head 3 times in the last 10 days. I don't know what's going on, but that's 3 times too many to me! I've had some serious concussions when I was younger, too...motorcycle accident, etc. I'm probably up to about 8-10 now. Jangle - Where are the clinics that offer stem cell therapy for brain damage? I've also heard that there are places that will do an MRI on people like me who have pacemakers. Do you know anything about that? Thanks!
  15. Looks like some 'Type A' personalties out there. I know I'm one!
  16. Charmed, I also have Medicare and go to see Dr. Goodman at the Mayo in Scottsdale. Never had a problem with them or billing. I think you may possibly been given wrong information. It's just a little more expensive than other docs, but to me, seeing Dr. G is worth it!
  17. Good luck to you! I'll be sending out positive energy in you and your doctor's direction.
  18. Tons of stretch marks! But I had a 11.5 pound baby by c-section!
  19. Trach, I liked the reply, also. Thanks for posting it!
  20. Issie my friend, I'm sending positive thoughts and energy, and prayers your way. Please let me know if I can help in some way. Hang on and know that eventually, things will probably get better and return to "normal" for you. Wish I could be there to give you a hug. Jana
  21. Cleveland Clinic is very good, and the Mayo Clinic in Rochester, MN or Scottsdale, AZ are also very good. If you look at our home page, you'll find a list of other doctors that also specialize in our field. Good luck!
  22. That's terrific! I see Dr. Goodman myself at the Mayo Clinic in Scottsdale, and he's been great.
  23. I've also had a blood clot in my heart, but it was attached to a pacemaker wire. After 6 months on Coumadin, it went away. I think you're more likely to get a clot if you have the risk factors, or are pregnant and laying down a lot, like Claire writes. On a plane ride I always make sure to get up and move around as much as possible. The same is true for laying or sitting too long.
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