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About POTSMama

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    Does anyone want to start a Colorado support group with me?

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  1. Hi Carol, I saw you are using LDN.  How did you start out and ramp up dosage-wise and what if any side effects did you encounter?  I may begin a course and am in uncharted territory (but ever since I was dx'd with POTS, it has been that way).  Thanks!

  2. Hi Michelle, Sorry it took me awhile to respond - I don't often log onto this forum anymore. I'm afraid there aren't any great doctors in Colorado for POTS or MCAS - - I know because I hunted for one. My family doctor was open and helped diagnose me with POTS but he I don't think he is taking new patients right now as he's moved into an administrative role at a hospital system) and he only diagnosed me after I went to a cardiologist, Dr. Collins at South Denver Cardiology. Dr. Collins also isn't an expert on POTS either, but he did the tests including Table Tilt Test that determined I had
  3. Stace915, I ate vegetarian for years also, but when I had to restrict my diet so much I added chicken for protein (still don't like it, but feel worse without it - - make sure you are getting enough protein and B12 methylcobain sort if you can tolerate it [I can't]). From your description I suspect you do have MCAS rather than just normal allergies. I spent years thinking I just had POTS and "allergies". But MCAS is different and once I knew I had it, I had a better idea how to handle it, and just throwing more and more allergy meds at it didn't help all by itself. I really think you shou
  4. Hi Stace915. I haven't been on here in years, but received notification of your post via email and I'm happy I did so I can give an update. Reading my posts from years ago, I recall how very desperate I felt at the time! First of all, I can tell you that I am much, much better so there is lots of hope for improvement! I now live a fairly normal life, working a job, taking care of my children. and doing most things I want to do. I don't always feel great and I still have bad days, but more good ones than bad and I am extremely grateful for that. I think my immune system finally settled down wit
  5. One more voice chiming in - - I live in the suburbs of the mile high city of Denver (5280 feet so our air is somewhat rarified, and ven more noticeable when you go up in the mountains) and I also notice changes in barometric pressure (I think it's sudden changes for me) and high humidity are a negative factor in my breathing ability as well. But I have been breathing better since I've been on both Singulair and Allegra for the MCAS, noticeably better. I take 10 mg Singulair (the adult one; the kid one has red dye which I'm sensitive to) and 180 mg Allegra - - I also take Atarax and Zantac, b
  6. I don't have any real tips, but I know what you are talking about. When I'm exhausted at bedtime I lay there feeling like I can't draw a complete breath and also as I'm dozing off I sometimes stratle awake with a deep breath like I've had an episode of apnea. I had this for years. Sometimes it seemed to help to prop up more or lay on my left side and take a few deep breaths. Sometimes if the shallow breathing/tight chest was accompanied by BP volatility I took a small dose of clonazepam (Klonopin) and it seemed to calm my system down and loosen up my chest. Since I've discovered these last
  7. Yes, I've always shown a normal echo even when though I have tachycardia often..
  8. Yes, it definitely can be POTS related when you have an otherwise healthy heart (but do get a cardiologist to check you out if you haven't already). When I first got POTS symptoms many years ago, a 24 hour Holter monitor showed an alarming number of PVCs according to my cardiologist, but mine have subsided over time and especially now that I found out I have mast cell activation problems and am treating that condition, I rarely have heart rhythm problems. Still, from time to time over the years I'm sure I've had PVCs, as I can feel my heart beating forcibly and feeling like it's skipping bea
  9. I had POTS symptoms for 15 years with no tinnitus, then one day unilateral (one ear) tinnitus episodes began so I had an MRI to rule out an acoustic nerve tumor on that side, which was negative. After a couple years it became bilateral but still was only once in awhile - - most notable after a busy day when I was laying in bed and the house was quiet. Then, like Anaphylaxing, I developed a near constant bilateral tinnitus that fluctuates in loudness about the time I had my anaphylaxic episode and started showing mast cell activation syndrome (MCAS) symptoms (several months ago and it hasn't
  10. Elegiamore, You are in my thoughts and prayers that you find some relief soon!
  11. Sandy, have you been evaluated for mast cell activation disorder/syndrome? Because BP dropping out and weight loss can be symptoms. Of course they can be of a lot of other things too, but just thought I'd throw that out there.... I hope you feel better soon!
  12. Yeah, hmmm, OK, that didn't come out right! I mean he says he is just going to be ageless from now on, NOT that he doesn't want to be around! We both started saying we were "49 and counting" a few years ago....
  13. Julie, I'm sorry to hear you're having some unexpected health issues, but I'm 53 in April and many of my friends are in the same age range and I'm seeing all of us having a variety of medical issues (including cardiac issues) now, even those who don't have POTS/MCAS/connective tissue issues like you and I. (I've had POTS symptoms for more than 20 years and now this year major MCAS symptoms hit, for those who haven't been following my story). My husband, who just turned 52 (and has been a type 1 insulin-dependent diabetic for over 20 years), complains that getting old is really the pits and th
  14. Well, I am still ruminating on the appointment I had today with my new allergist/immunologist (2nd visit, to go over test results). Overall I think it went well. Here's the highlights: 1) She said that I had "60% higher than the upper limit of normal" levels of n-methyl histamine in the 24 hour urinalysis (which was taken during an episodic period). She said that this finding explains my symptoms. 2) She said that the prostaglandins and leukotrienes were not elevated. 3) She said that the tryptase, taken during the same general period as the n-methyl histamine, was not elevated 4) She said
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