Yolaclover Posted December 30, 2011 Report Share Posted December 30, 2011 So, I just wanted to say Hello. Had some autonomic testing on Dec. 1st showing NO OI, POTs, autonomic dysfunction. Yay! However. I continue to struggle with head pressure and head pain. I take gabapentin which helps, but always seems to trigger the "feeling of passing out whilst sleeping" I hate that!!!Otherwise I'm trying to live, working in my new job teaching 1:1 in a private school, raising my 4 and 5 yo and trying to not let the symptoms get to me when they pop up. Weimer, the Dr. at Columbia Presb. in NYC where I did my testing, seemed to think that the POTs was triggered by the Hep. A or the Celiac (which by the way has yet to be 100% confirmed despite every test known to man so GI is sending me to Peter Green, ironically, also at Columbia Pres.)That's my update, love you guys And please tell me how you are!!!! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted December 30, 2011 Report Share Posted December 30, 2011 Yay! You sound much better. What do you think is helping? Quote Link to comment Share on other sites More sharing options...
Elegiamore Posted December 30, 2011 Report Share Posted December 30, 2011 Well, thank you for asking! 718, sorry you got these diagnoses but...glad you have diagnoses now! lol! Information leads to progress.Today is my anniversary and my husband has not left me even though I am good for nothing but a disability check these days. So I am so grateful he is still here!And Happy New Year to us all - let's be confident that new treatments will be there for us in 2012.Thanks for the post today. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted December 30, 2011 Author Report Share Posted December 30, 2011 Glad your husband decided to stick around Elegiamore I am not sure what helped. I still have bad days. I still have a lot of head pressure at times. I get this weird nerve pain at base of skull. I think time passing has helped, gluten free I suppose and well, I don't know I am scared to say I feel good because the next thing you do...you don't, lol!Anyway, miss you all.C Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted January 3, 2012 Author Report Share Posted January 3, 2012 So, i recently had a test for csf leak. It was not a csf leak. I also sent all of my MRIs to Chiari Center. Not chiari. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted January 3, 2012 Report Share Posted January 3, 2012 I get sporadic head pressure as well, though it is hard to describe. Mine, though, is basically centered at the top of my head. I was bedridden with it all day yesterday. I didn't want to move, watch or even listen to the TV, eat or even talk. I just felt absolutely horrible. Can't really say that my head hurt or ached-- I just felt weird. Luckily, today, I feel much better and the head pressure is gone. Sure wish I knew what was causing it! Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted January 3, 2012 Author Report Share Posted January 3, 2012 I get top of head pressure too, have had this issue since POTs came into my life. BP is way better but the pressure keeps coming back! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 3, 2012 Report Share Posted January 3, 2012 You can just send your MRI's to the Chiari Center and they'll look at them for you?? The one on Long Island? How did you set that up? I understand about the head pressure - it's a constant, perplexing problem for me too. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted January 9, 2012 Author Report Share Posted January 9, 2012 Yes Naomi I sent my application, they told me to send my disk with a new copy of the application, I did, they sent it back, they cannot help me. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.