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Everything posted by gomindy21

  1. I know that this was a while ago, but I wanted to see what the results of you taking these supplements, Nauthiz. So if you are still use the forum, it would be great to hear
  2. Great to hear that there may be some hope! Keep us tuned in to how this things are going with this over the next few weeks!
  3. Thanks for posting! I hope that it works long term for you. I had wondered about ginseng myself, but have been afraid of trying it.
  4. Awesome! Great to finally hear that someone is recovering or has recovered. Are you standing for two hours straight, or is the standing spread out throughout the day?
  5. I get yucky feeling when I'm riding in a car. It doesn't seem so bad when I'm the one driving for some reason. But yes, since my pots got worse I did develop motion sensitivity.
  6. I get yucky feeling when I'm riding in a car. It doesn't seem so bad when I'm the one driving for some reason. But yes, since my pots got worse I did develop motion sensitivity.
  7. I'm sorry you are going through so much yuckiness! Hang in there and I hope you start feeling better soon!
  8. Thanks for posting this! When I find out more about exactly what kind of POTS and EDS I have, I will be very interested in trying something like this.
  9. There seems to be a lot of unknowns with our illness doesn't it! I'm so glad that there are forums like this so we can all colaborate. Thanks for sharing
  10. THanks, Maxine! The nurse Practicioner from Dr. Grubb's office thinks I have a type of EDS, and I'm just going down the road of trying find a geneticist/ dr., etc. I'm sure Dr. Lavallee is pretty understanding and knowledgeable since he has EDS. THanks again!
  11. I am currently having the low blood pressure issues. I am hoping to find out more when I see Dr. Grubb in January. I know it can be very frustrating! I have posted about the low blood pressure. As I learn I will try to pass on info to you
  12. Yes, if does feel good when you finally meet someone who understands and is patient. Who is your EDS doctor?
  13. I have had panic/POTs problems. I would first suggest talking to your specialist/physician, etc. Currently I am undergoing progressive relaxation therapy. My therapist has actually worked with Dr. Grubb on some research with this a while ago. I've only started it this week, and it has helped out tremendously with calming my system down. It actually is a series of muscle constrictions/releases and breathing. So, if you are not big on medicines, this might be something that is helpful.
  14. Maisie 87, As I was looking up what causes low blood pressure, I did notice that adrenal problems are a possible cause. I was seeing a naturopath before I knew I had pots who had given me a supplement for my adrenals because my coritsol levels were low. Unfortunately my body didn't agree with some of the ingredients in the supplement(ginseng, niacin). Let me know how your appointment goes and if he suggests anything to take. I hope your appointment goes well
  15. Potsgirl, my heart rate sometimes drops while laying down, but occasionally it rises to the 70-90's while my blood pressure is still low.Not quite as high as yours gets when laying. That must feel very bad when your hr gets that high with low bp. And yes, I think the feelings I get while my blood pressure is low is a worse pain then when my heart is racing.
  16. Thank you for replying. I wasn't sure if this was a POTS thing or not. It's been concerning me because I know that really low blood pressure is not good for the body and I don't get to see Dr. Grubb until January. What is ME?
  17. My symptom seem to change all of the time, but the one symptom that has been consistent for a few weeks is that the longer I lay down the lower my blood pressure gets, and occasionally my heart rate will get really low as well(lowest 51). Going to sleep is very difficult because my blood pressure likes to drop to anywhere between 78/53 to 98/48 when laying and that's almost every night lately. When I am up during the day often my blood pressure goes up with my heart rate. Anyone else experience the low blood pressure when laying issues and if so, what kind of POTS or other(EDS, etc.) do you have?
  18. I have two disc bulges and one herniated disc. I also have slight scoliosis. The chiropractor has really helped with the pain.
  19. Thanks for letting me know! I'll read your other post!
  20. Did you ever try the horse chestnut, or just the butcher's broom?
  21. Thanks for sharing this. I have a friend who has MS. I will gladly share this with her!
  22. My level was at 19. I started taking a vitamin D3 spray. Will be interested to see what happens in a few weeks.
  23. I have that quite often. I use to have a very strong pulse until the last couple of months when my POTs progressed.
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