Notgivinup Posted November 1, 2009 Report Share Posted November 1, 2009 Beverly at Dr. Grubb's gave me script for singulair. Still working on the MCAD theory. I feel pretty normal again. Aside from some muscle pain. POTS symptoms are mostly gone.Unlike last time I'm not getting my hopes up. It's yet to be seen, but the usual pattern has been 10 days to two weeks before a new med stops working. Very strange. I sure wish some doctor could explain this to me. I wish for too much. **sigh** Quote Link to comment Share on other sites More sharing options...
Jen2533 Posted November 1, 2009 Report Share Posted November 1, 2009 I'm really happy to hear you are getting some relief! I hope it lasts. I have seen quite a few people on here taking singulair. I'm new to all of this and still on the diagnosis road but all sign's point to POTS. I was just wondering how singulair helps with POTS.Thank you,Jen Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted November 2, 2009 Author Report Share Posted November 2, 2009 I'm really happy to hear you are getting some relief! I hope it lasts. I have seen quite a few people on here taking singulair. I'm new to all of this and still on the diagnosis road but all sign's point to POTS. I was just wondering how singulair helps with POTS.Thank you,JenWell, I think, in my case it helps with what we suspect to be the underlying cause of my POTS, which is MCAD (mast cell activation disorder). In one word....Histamine.Histamine is a potent vasodilator. I have not been tested for MCAD. But since I've been put on H1, H2, blockers and singulair, my main POTS symptoms have disappeared. I am on no other "POTS meds".Now keep in mind, my body is weird. Almost every new med. has worked for me, but, only for a couple of weeks. I'm going on I think 7 days with the singulair added, and so far, so good. In another week or so I'll let you know. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 2, 2009 Report Share Posted November 2, 2009 I've got my fingers and toes crossed that it'll last! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 2, 2009 Report Share Posted November 2, 2009 I wish you the best of luck and hope this keeps working for you! Keep us informed...Cheers,Jana Quote Link to comment Share on other sites More sharing options...
persephone Posted November 2, 2009 Report Share Posted November 2, 2009 For everyone who tries stuff and has it not work, I suggest EPOGEN injections. They are expensive but I had tried everything else known to man just about, and they helped me more than anything. Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted November 2, 2009 Author Report Share Posted November 2, 2009 Thanks, you can be sure I will keep you all updated! Even if you're sick of hearing about it. Quote Link to comment Share on other sites More sharing options...
StacyRN Posted November 5, 2009 Report Share Posted November 5, 2009 For everyone who tries stuff and has it not work, I suggest EPOGEN injections. They are expensive but I had tried everything else known to man just about, and they helped me more than anything.Epogen helps? How often do you have to have the injections? Did they explain to you why/how it helps POTS? Thanks... Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted November 6, 2009 Author Report Share Posted November 6, 2009 UPDATE. While I've been feeling better, I'm still not feeling "right". Hard to explain, just not healthy, & of course always tired. And muscle pain.I still have tons of brain fog, & cannot for the life of me find a doctor in or around Youngstown, OHIO, who knows anything about MCAD. Grrrrrr. Quote Link to comment Share on other sites More sharing options...
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