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Everything posted by potsgirl

  1. 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.
  2. 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?
  3. 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!
  4. Looks like some 'Type A' personalties out there. I know I'm one!
  5. 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!
  6. Good luck to you! I'll be sending out positive energy in you and your doctor's direction.
  7. Tons of stretch marks! But I had a 11.5 pound baby by c-section!
  8. Trach, I liked the reply, also. Thanks for posting it!
  9. 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
  10. 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!
  11. That's terrific! I see Dr. Goodman myself at the Mayo Clinic in Scottsdale, and he's been great.
  12. 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.
  13. Have fun with your new puppy! I think pets can go a long way in making us feel better. I have a black cat, Raven, right now and I love it when she sits in my lap while I'm on the computer or the couch. I'll bet it's hard to see your foster dogs leave, though. Do you have pets that just stay with your family full-time?
  14. I worked in management in retail, and then I did archaeological work near the Grand Canyon for a tribe where I would stand most of my days. I loved that job, but the high heat and standing just weren't possible...I've been out of work for about 3 years now. I really want to go back!
  15. I had to go to the ER twice in 8 days. Did I mention I really, really didn't want to go? The first time was for an excruciating episode of occipital neuralgia where I didn't sleep for days, the second (three days ago) was when I had a seizure in the shower while I was washing my hair and then passed out in the shower. I hit my head pretty hard and was out for awhile. The ER did a CT scan, gave me fluids and pain meds, and took me seriously, so I guess that's a bonus.
  16. klcowley, There has been a ton of information on Mayo Clinic from the past, so I would recommend doing a search on 'Mayo Clinic' in the upper right hand corner of this page. Rochester, MN is where the group of autonomic specialists are, but we also have a great doctor who specializes in dysautonomia in the M. Clinic in Scottsdale, AZ. How you had any tests done yet, like a tilt table test?
  17. Katherine, Thanks for finding the stats from the last poll in 2004. I know I should have done a poll - I may still do one to see where the numbers are now, especially since this new theory has come about.
  18. Hello Everyone, I saw a segment on the Today Show yesterday where they discussed new studies that were finding that people who are left-handed tend to get certain diseases (diabetes, heart problems, etc) more than those who are right-handed. The population in the US is approximately 10% left-handed. I think it would be interesting to see how many of us are lefties. I'm one of them, although I do certain things (eat, throw a ball, bat) right-handed. Thanks! Jana
  19. Jangle, you sound like my son! I was also very active before POTS, working out 4-5 days a week, hiking, etc. Now I'm lucky to do 40 minutes on the treadmill or EFX 3 times a week. Oh, and always ab work!
  20. My condolences on the loss of your husband's grandfather. Seabands can work for nausea, as can Dramamine. I've noticed that Benadryl can also help. I drink a lot of water with electrolytes (tablets you drop into your water by Camelbak), try to keep my feet up as much as possible by leaning the car seat back or lying down on the back seat, and try to snack on salty foods during the trip. Get out to stretch (and probably use the restroom with all that water!) along the way, and try to rest as much as possible once you get to Michigan. I hope things go well for you, and please let us know how you
  21. I wore a Holter monitor that showed my HR was consistently low - in the 30s and 40s. So, I got a pacemaker for my bradycardia. I was so tired out and could hardly walk more than 50 feet or so without becoming completely exhausted. Turned out I had cardiomyopathy (dilated) and congestive heart failure. Everyone is different, but I would check with a cardio and possibly get an echocardiogram to check out your heart function. Perhaps a Holter monitor, too. Good luck and let us know what you find out!
  22. I couldn't find the pic on your blog, A. What is it under?
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