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About Loulou

  • Rank
    Advanced Member
  • Birthday 01/03/1972

Profile Information

  • Gender
  • Location
    Panama City Beach Fl
  • Interests
    I spend my bad potsie days reading and movie watching and sleeping. I used to spend my good days going to the beach or kayaking. But not so much now.

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  1. DizzyGirls, Hi. thanks for the info. He was on Claritin, pepcid, Singulair, the prednisone taper, and he is having no milk or milk products, plus Benedryl when his lips or face began to swell. He was close to anaphylaxis for weeks there, two emergency room visit for epi shots and finally we got it under control and he is keeping it at bay right just on the Zyrtec and pepcid. He did try to zantac but it cause him a different kind of stomach pain and then change over to the pepcid. We ran out of pepcid so he has only been taking the zyrtec the last couple days. So I have to pick up more
  2. You are not alone. I have so many, I know people think i am abused.
  3. Hi, just want to vent. My husband was just diagnosed with Mast Cell Activation. But I feel he was only tested for it because he was covered head to toe with urticaria for the past 7 months. But for many years he had abdominal pain and diarrhea, he was checked for IBS and other stomach and bowel issues, but never for mast Cell. Has anyone here gone through the same abdominal issues before you were actually diagnosed and what is your worst symptoms. I have POTS and IST myself so I was already here in the group. And find that the mast cell peeps may be able to help me make his day to day issu
  4. I was told last year that I have primary open-angle glaucoma. I had no nerve damage til this year, and he says I need to start the medication soon. I want to have test repeated by an entirely different Dr's office just to make sure they are correct. I have wondered if it was related to pots. I am just 45, so it could be genes. But I don't know enough about my family medical history to know for sure. I sure hope it has nothing to do with pots, I feel like this would be the draw, it certainly takes more than it's share from us all. And also, do you think glaucoma itself causes tachycardia or is
  5. Thanks for the information you have shared. I am always looking to find something to help....
  6. Hi I recently heard about a new therapy that is used primarily for drug additions, but also suppose to reset and restore the brain and nervous system. I wonder if this could be something that could help us potsie's. So my question is, has anyone of you tried this new Brain Restoration Infusion Therapy and did it help? WHAT IS NAD TREATMENT ? NAD Treatment is a detoxification and brain restoration protocol that involves the coordinated, integrated use of intravenous and oral nutritional supplements (amino acids and vitamin metabolites, including co-factors) to help restore brain func
  7. Brethor9, Yousaid, "many of us POTSies have all 3 disorders as they travel together ?" Do you think that you had all three all along and they are just becoming too much to just push threw? Or that maybe one has caused the others? I can't believe the great things the medical world is able to do but can not figure out how to fix our issues. It's crazy.
  8. TCP, My pressure is going up and down too, my eye doctor says that the question is not if but when to start treatment. So I am going to hold off as long as I can. Thank you
  9. Katybug, Thanks for the encouragement. I just wish I knew more and what direction to go, I am very flushed today, but getting an appointment while having symptoms is an issue. Can't be seen until next week. I am very frustrated, your right.
  10. Thank you Katybug. I will check out this site.
  11. Katybug, Yes, your right. My PCM asked when these symptoms started and I don't know what to tell him, so I said I really don't know whats POTS, Inappropriate Sinus Tachycardia, or what parts would be MCAS, Mastoycytosis, etc. They all overlap. It's a struggle, my test were not handled correctly and is not accurate, and this was the best local lab available.
  12. I hope it goes well for you two. Seeing a dr who can teach and treat you right makes such a difference.
  13. Hi, More questions for you all, I have had hair loss with my mast cell, once treatment begins helping does your hair come back and what about mast cell causes your hair to fall out? Also, when having skin biopsies will mast cell show up if the lesion is an old lesion? I hope you have experience with this and can help me. Once you all were on the right meds for your condition did you begin to feel better and see improvement in your skin? Does the proper medications make a difference in your ability to function daily? Thanks for your help. I guess I am going to have to travel out of t
  14. Hi Everyone, My POTS Dr. is NOT currently seeing patients because he has POTS himself and is having a hard time medically. Could you please share how your mast cell began. I feel like I have a very mild case and really think mine is just in my lymph nodes and skin. But this could be just my not knowing enough on the subject of mast cell. My primary care doctor is (willing and trying) to treat me since I am unable to see my POTS Dr. and wrote a prescription for Singular and Clarinex on Monday. He told me he does not know a lot on either POTS or Mast Cell but is willing to try to treat me
  15. KiminOrlando, Hi, which Mayo did you go to in Florida, I am considering going to Mayo in Jacksonville, but would not want to waste the time if it were not good.
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