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About Loulou

  • Birthday 01/03/1972

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  • 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 today. They cost so much to take it all two times a day even after all the tapering down of the different meds. I am starting him a food diary to try to find his triggers, but really unsure how to start. The crazy thing is that my POTS dr thought I had mast cell and tested and began treating me for it last year some time, my serum triptase was up two times and then back to normal, so we just monitor mine and then my husband is covered head to toe. My husbands serum triptase was 14 the first time and this last time 13. He is waiting for an appointment with a hematologist and of course for our ins to authorize it. So does your daughter have the (adolescent mcad)? I have been reading everything I can to learn 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 issues a little better. Any advice or things that has helped you mast cell peeps feel better please let me know. My husband has always been the healthiest person I knew and it is hard to see him dealing with this.He is in the early stages of diagnoses, so I am just wondering if all these years these stomach issue were mast cell. His second serum tryptase came back high again and his C-Kit came back negative so thankfully they say this means it is not mastocytosis. He has always been wide open, never slowing down even with the stomach pain and diarrhea. He was active duty military for over 20 years. Exercised everyday while active duty and now with the job he is in, he works so much over time he does not have time for any type exercise. So could that cause him to just begin to have severe uticaria? And is Mast cell something that can happen at any age? He is 46 and had never had urticaria until 7 months ago. Right now, he is coughing and weak, always tired. The stomach pain and diarrhea comes and goes. The uticaria is finally under control after a month on tons of antihistamines and steroids. He will be seeing a hematologist soon who will verify the diagnosis is mast cell and not mastocytosis. Zyrtec has helped him the most so far. Just hope it stays under control. I am in need of words of wisdom. How can I help him.
  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 it the medication? I am still researching and learning myself.
  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 function. The program is administered by physicians and nurses using established therapeutic approaches to detoxification, as well as traditional methods for treating various disorder
  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 town for treatment. I can not find a doctor locally who know how.
  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. So how and where you started would be great info. I have googled Mast cell and I understand the just of it. But what I don't find or see is how it began and what people first notice. And exactly what happens to the body when mast cell is active. Currently, I get tiny red spots or bigger blotchy red spots mostly after showering that does go away after an hour or so. I seem to have a lot of scattered Urticaria pigmentosa and diffuse cutaneous mastocytosis, that seem to never go away. At least based on the pictures on the internet. What kind of Dr do you see for treatment of your mast cell? Also, yesterday, I was diagnosed with Glaucoma, I am 44 years old. The normal age for Glaucoma is 60. So can Mast Cell cause Glaucoma? For you ladies, how do you cover mast cell on your face? Thank you for any info you can share and for listening.
  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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