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Lethargic Smiles

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About Lethargic Smiles

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    Advanced Member
  • Birthday 05/23/1989

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    http://www.lethargicsmiles.wordpress.com

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  • Gender
    Female
  • Location
    Illinois
  • Interests
    POTS onset: February 2008
    POTS diagnosis: February 2012
    EDS-3 diagnosis: January 2014
    Sjogren's Diagnosis: September 2014 (onset was 2008)

    I've been to several doctors for POTS, including the Mayo Clinic in Minnesota. I went to The POTS Treatment Center in Dallas as well.

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  1. I typically only go once a week in an "advanced" bed for 10 minutes. Sometimes I'll go 2 times, but generally my limitations financially and physically don't allow that! Tanning beds have been found to be helpful for people with MS because of the immune system involvement. After tanning, the immune system is a bit suppressed. I wonder if this plays into why it helps some of us? I also wonder about the body using vitamin D from light differently than that from an oral supplement. Racer -- Thanks for the links. I don't only tan for the look of it. The effects are what I am mainly going for as I
  2. I know this is old, but I was searching on tanning beds because I feel so much better when I tan at least once a week. It isn't low Vitamin D because my levels are great even without tanning. I also get it in a supplement and in my almond milk. I know some people theorize the way our body uses vitamin D from sunlight/tanning beds is different than how it uses oral supplementation. It seems some of us do great with sunlight and tanning which, to me, points to possible autoimmune issues, while others feel awful after being in sunlight. My tricks are: Go mid-morning or mid-afternoon, this way you
  3. I have this same question about tryptase. I'm a total newb to MCAD. This study from 2006 (based on what I read in abstract) found serum tryptase level were lowered by second generation antihistamine usage: http://www.ncbi.nlm.nih.gov/pubmed/16843643 If I get tested, I'm thinking I will quit taking my NyQuil each night and also quit Singular (not an antihistamine, but sometimes used for MCAD).
  4. GN -- I love your attitude about work. It took me about 4.5 years to come to this realization, and I still sometimes think things such as chores should be put ahead of resting.
  5. Could you add options to the second two questions that say "I don't work."
  6. I just wanted to add that I get this too and was also put on Tramadol! My HIDA showed a very low ejection fraction, but still high enough that it was left up to me on whether I wanted my gallbladder out or not. I voted no. I don't have much wisdom on helping this problem other than small meals and digestive enzymes to ease digestion... but I just wanted you to know you're not alone.
  7. The current cost is 5,000 which includes the equipment you need to use at home following the accelerated 2 week program.
  8. Alan, sorry to hear about the increased blood pressure, but it is great you are keep us so up to date. It will help others know what to possibly expect should they find they are helped by trying out cabbage juice.
  9. Thanks for the ideas. I'm wanting to get this done before I go for 2 weeks of intense biofeedback treatment (POTS Treatment Center) July 20. I think it could really help me notice improvements I may otherwise overlook. When I get it done, I will post a link. In the meantime, keep the ideas coming!
  10. I just wanted to share for anyone who may look through this topic, wondering what to expect at Mayo Clinic in Rochester, that I had a wonderful experience. I had two insurances when I went. BCBS of IL was my primary and BAS was my secondary. I felt so blessed because all of the tests and appointments came to a total nearing $20,000 and I paid nothing out of pocket. The insurance was not (and never has been) happy about Tilt Table Tests and always ask for an explanation of why that particular test needs done. Once they understood it is the only way to diagnose POTS, they were okay with it. I wr
  11. I'm looking for a printable dysautonomia checklist that is categorized by area (neurological, digestive, vision, endocrine, etc...) I was thinking for chronic issues there could be a check mark and for symptoms that occur only during flares a circle or x or something like that. Does this exist? If not, I'm going to create one myself. I just don't want to recreate the wheel! I found this thread that will be a wonderful start for a checklist: http://forums.dinet.org/index.php?/topic/22986-the-symptoms-we-get-from-pots/?hl=%2Bcheck+%2Blist#entry214500 Feel free to give suggestions of symptoms tha
  12. Thanks for your detailed answer! I have some specific things I want to be looked at (especially EDS) just so I can make sure my treatment approach makes sense. I'm going to start with a geneticist in Chicago (I live near) and go from there!
  13. Liz, do you live outside of the states and that is how you get Ivabradine or do you use some other method? I've read about this particular drug and always been interested in it. Did he seem interested in looking for the root cause of your POTS? That's what I'm looking for right now. I don't want a doctor who will confirm I have POTS. I want a doctor who is interested in helping me figure out why.
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