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Clairefmartin

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About Clairefmartin

  • Rank
    Advanced Member
  • Birthday 06/23/1978

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  • Website URL
    http://www.stoppotsvirginia.blogspot.com
  • Skype
    eklayre

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  • Gender
    Female
  • Location
    Virginia Beach, VA
  • Interests
    Art, Design, Gardening, Marine Biology, Science, Reading, Feeling better,!

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  1. Not sure if this has been shared - but it came in my weekly Pubmed roundup as new - even though it is dated from March. I have been reading the threads on here about all our wacky ear issues, and thought this was interesting. http://www.ncbi.nlm.nih.gov/pubmed/22205233 Exp Brain Res. 2012 Mar;217(2):251-9. Epub 2011 Dec 29. Evidence for vestibular dysfunction in orthostatic hypotension. I'm trying to get the full copy. xoxox Claire
  2. Weird - I hopped on Facebook and someone posted this about PQQ: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2804159/?tool=pubmed
  3. You can have dysautonomia with tachycardia and not POTS - the POTS criteria just means 30 beats per minute when you stand within 10 minutes. They sometimes also diagnose "Orthostatic Intolerance" if you don't quite meet the criteria. Either way, POTS and OI are both caused by something - and if your QSART was abnormal that suggests (according to the literature, I'm not a doctor or trying to diagnose you) neuropathy of some kind. The "fun" thing with neuropathy is that it's like POTS - you have to find out what is attacking your nerves. I wrote a big long blog post about it here with a list
  4. I'm sorry to hear you have Mito - but glad you have another piece in the puzzle. I have heard my Mito friends talk about the Mito cocktail as well, and quite a few have benefited from it - so hopefully you will too! I read at last count there were 1500 different Mito's, and most hard to find, so it is great you got some answers. Sending hugs!
  5. I have heard mixed reviews. It is not a cure by any means, but many people seem to benfit from it - learning to control your breathing and temperature helps with the ANS symptoms for some. The people I have heard from love the doctor and staff their, but I think the cost and travel expenses are a factor as well - and you can find local biofeedback in many areas closer to home. Best of luck!
  6. Thank you Arizona Girl! I am just seeing this. I will look it up for sure!
  7. Sounds like you need to get to a specialized center ASAP (in my opinion), like Cleveland or Mayo or Vanderbilt. Somewhere that has multiple doctors across specialties that can work together to dx you. I'd say skip Dr. Grubb for now, he is WONDERFUL, but he is one man and his wait list is long. Have they looked into MIto for you? Mito causes issues in so many areas, its just the first thing I thought of. Either way, I'm sorry you are dealing with so much - and I hope you get answers!
  8. Thank you Arizona Girl - that is a lot for anyone to deal with! I hear this from lots of people with AI issues, they tend to cluster, and cross over, and change over time. I'm completely antibody negative, the only thing that shows up for me is high IgE and IgG, and mildly high C1. I have been reading up on CVID, have not heard of UCTD, but will look it up. Thanks again - and I'm glad you found treatments that help! I know quite a few people with AI/POTS and with IVIG their POTS symptoms all but dissapear. I'm hoping something shows up that can be treated with it, because it seems to wor
  9. I FINALLY recovered my log in and password! My old laptop had died, and all my saved info along with it. Just wanted to say hello, and up date you all quickly. I'm still working towards a more concrete DX/cause of my POTS, but Dr. Chemail is pretty positive I have Autonomic Neuropathy, definitely POTS (duh), transient OH, and something autoimmune causing the neuropathy. He thinks Sjogrens is most likely. I also am looking at MCAD, still having random crazy reactions to things, but that could be autoimmune (or both). My Mom's doctor out of the blue told her she needs to be tested for Sjogr
  10. Thanks for checking on that for me Maiysa! I had a random MCAS question - can you flush without showing severe flushing? I have many episodes where it actually feel like I am burning from the inside out on my face, and usually ears, but I look in the mirror and may be a bit pink, but not the crazy red I see many get in pictures of MCAS. This may be hormonal I'm thinking, and not MCAS? SO confusing. Thanks.
  11. This was my thought. I was just diagnosed with chronic EBV, and waiting on my Vitamin D results. I have been tested (via non-contrast MRI) so many times for MS, and always negative, but there is so much overlap! Anyways, glad people are trying to put the pieces together.
  12. I had a SUDO SCAN! Not many doctors do it, its geared towrds dabetic neuropathy, and I'd humbly suggest that you see a nuero that will do some of the other tests to dig deaper and see whats going on with your neuropathy. Here's a link to info on it: http://www.impeto-medical.com/sudoscan-plus/the-sudoscan-plus-principle/ Zoloft is known to put weight on people, that is no fun. I'm having so many more issues now that I'm overweight as well. I hope you find a solution for the Zoloft, hopefully others will chime in.
  13. This is why the grinch stuff is so damaging, i'm hearing it from patients left and right. So I would ignore that part. I'd suggest seeing a neurologist who knows about dysautonomia if possible, and the endocrine doc. YOu are entitled to a second opinion, especially regarding the Zoloft. I'm in the same boat for different reasons - was on forced bed rest becaise of a crazy high risk pregnancy for 9 months, and I am beyond deconditioned (and 60+ pound heavier) and now have possible metabolic syndrome (blood sugar is all over the pace, liver numbers wacky, triglycerides high, etc...), but the
  14. Here it is, wish I could afford to buy the entire thing! http://www.sciencedirect.com/science/article/pii/S1568997212000845 Mentions interesting areas of research I have seen discussed on here before. Claire
  15. Someone started a group on facebook where you can look up others in your state with Dysautonomia, here is the link: https://www.facebook.com/groups/dysautofriendfinder/ I found a bunch of people locally that I had no clue existed! Thought I would share. xoxo Claire
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