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Everything posted by McBlonde

  1. Heard from a doctor on this one regarding Vitamin D3 and multiple sclerosis... "It looks to be genetic; many of us have thought it was a conversion issue and/or low sun exposure." http://www.ncbi.nlm.nih.gov/pubmed/22896638
  2. Dr. Randy Thompson is a Board Certified Internist who developed dysautonmia himself, went back to be trained by Dr. Cecil Coghlan at the University of Alabama in autonomic disorders... His practice is limited to dysautonomia patients and he is in Pensacola, Florida.
  3. Yes!! The ever changing weather systems moving through Louisiana are awful on me. I feel 100 times better on the Gulf in FL. I don't why though.
  4. That was a tiny dose (2.5) of Bystolic that did that number on me after 2 weeks (like you said "I was crying randomly and spontaneously, and really exhausted" ) after 4 weeks. I stopped the Bystolic & those symptoms disappeared. I still haven't taken any of my Clonidine yet. It's sitting waiting along with the Wellbutrin. I realize that what I'm afraid of is not what happens if I take either... What I am afraid of is what happens if I have bad side effects and stop taking it. A regular person takes a drug, has a side effect, stops taking it and everything goes back to how it was before they started the drug. I don't seem to be like that... New symptoms after I stop is what scares me....
  5. That's the part I don't understand about my own reaction with the beta blockers that I've tried. I don't have the fatigue/blues right away... It's like a month into taking a beta blocker that it hits me (feels sorta like a build up to that point i.e. like how it takes an anti-depressant a month to work) although in my case after a month of beta blockers have built up in me, crushing fatigue hits and a bad depression like feeling settles over me. With those symptoms, could the beta blockers be suppressing too much of my NE leading to fatigue and the blues?
  6. So maybe that's why it took 3-4 weeks of the Bystolic building up in my body before the fatigue/blues symptom hit? I've wondered about that, too.
  7. Yep!! Teenagers who get POTS are the ones most likely to "get over it" in time. The "WHY" is the big mystery!
  8. Thanks! I have always wondered....
  9. Does anybody know why beta blockers cause fatigue? Do they cause fatigue for all patients or is it only patients with orthostatic intolerance?
  10. It would be a good idea to have your aldosterone/renin levels checked prior to starting Florinef, because once on it, you get false low levels of aldosterone/renin. However, so many labs/offices don't do the test right. It's really amazing. Your supposed to lie in a quiet room and have your first draw and then have a second draw when standing. The sample has to be put on ice immediately and processed by specific criteria. I took Florinef .1mg since 2003. When I started having High Blood Pressure and edema in my left leg a few weeks ago. I just stopped it. I can't tell a difference taking it or not taking it. The only thing is that I have stopped peeing so much since I stopped, but that doesn't make any sense to me (regarding the Florinef)
  11. But your ACTH and cortisol are normal??
  12. Sounds like the Vit D3 will really help you, Sue!! Great timing on your doctors appointment! BTW, do you still have the adenomas on your adrenal glands like it says in your signature?
  13. When I used to feel like I was fixing to faint and then I WOULD faint if I didn't lie down.... I would feel good when I came back to... Then, I started just having the pre-syncope and not fainting. That feels terrible and a cascade of symptoms follows. I don't why the mechanism changed.
  14. That's so weird...... I wonder if it could be something in the brand itself, like a filler?
  15. and just to add to the confused way our bodies work.... after I started having hypertensive episodes I stopped taking the Florinef that I've been on for years. I can't tell the slightest bit of difference (except I'm not peeing all the time)
  16. Or maybe that patient had the 1-a hydroxylation defect, but the rest of us with lab showing low D3 don't ....
  17. Thank you! I'm sitting here with a prescription for Clonidine and one for Wellbutrin. I have hyperadrenergic pots. Saw my primary care doc Tues. and he freaked out over Clonidine and Wellbutrin, lol... So, I'm still sitting here debating with myself on which one to try first. There is all very hard when you've had bad experiences with meds to start with. Any thoughts on which one you would take first?
  18. I know! Here's the link to the treatment plan: http://circ.ahajournals.org/content/117/21/2814/T2.expansion.html
  19. yes, he does.. but now after readying what you posted.... I'm sorta freaked out. Mine renin levels were low to start with and so Clonidine would make my renin even lower?
  20. I don't know.... Dr. Grubb doesn't recommend Florinef for his hyperadrenergic pots patients on that treatment plan that was posted which I am now trying to find where I filed!!
  21. D3... I think I posted the article of why D3 above.
  22. Lemons, you said "If You Want To Get Better You Have To Push. Exercise!" I walk 30 minutes a day. I exercise in the pool. I do resistance training. PUSHING to get better does not mean you will get better. Congratulations to you, but that statement you made is just NOT TRUE.
  23. Now I am so confused on why Dr. Grubb ordered Clonidine for hyperadrenergic pots if it shuts down your own renin?
  24. I didn't know that either! Clonidine is what my doctor just prescribed for me. Thanks for posting!
  25. You really should get it tested..If it's low, it usually takes a high strength for 6 weeks to get it back in range..then get tested again. I've posted a link regarding that on here before. I'll see if I can find it.. Here you go... http://www.goodhormonehealth.com/symptoms/VitaminD3.pdf
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