icesktr189 Posted January 5, 2012 Report Share Posted January 5, 2012 I think for the past two years I NEVER have an adequate amount of blood in my head, even laying down. It helps my body symptoms, but not the head ones. I wake up and see visual snow without lifting my head up. I constantly see dots everywhere (like the small ones on the older tvs). Everything is always dark all the time no matter what position I am in. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 5, 2012 Report Share Posted January 5, 2012 Sure. if you have low blood volume, if you suffer from cerebral vasospasm all the time, if you have abnormal cerebral autoregulation that causes cerebral blood pressure fluctuations, or if your circulatory system is shunting too much blood to your stomach and not enough to your brain.All of these mechanisms have been postulated as a causal mechanism in POTS by various researchers and Dr Stewart says that the circulatory abnormalities in POTS are present both supine and orthostatic but are only increased by orthostatic stress. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 5, 2012 Author Report Share Posted January 5, 2012 I wish my doctors would realize that...they seem to think that there is no way I dont have enough blood laying down. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 5, 2012 Report Share Posted January 5, 2012 Hey DaniThis has always been my biggest struggle too.....I am constantly lightheaded 24/7 dizzy and off balance....some days its is so bad I cant even get out of bed. I drink tons of fluid but its like it doesnt matter because it never gets to my head.....I really wish there was something we could do about this I am going to talk to my specialist next about octreotide maybe.......I pool even in my arms and hands so I definately know there is not enough going to my head and I am symptomatic lying, sitting and standing....when its bad...its bad no matter what position.Bren Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 5, 2012 Report Share Posted January 5, 2012 me too guys - doesn't matter what position I am in, my head feels empty. Too dizzy 24/7 so intense. At times can't get out of bed either Bren - well lots of the time!It's so cruel this illness Have started 1omg Propranolol and awaiting spec appt for more advice. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 5, 2012 Report Share Posted January 5, 2012 Hey Allie.....sorry to hear that I hope the beta works for you....unfortunately I have tried almost every one and they just seem to make matters worse. I keep telling my docs the only reason why my HR and BP are so wonky is because my vascular system isnt circulating properly. Sometimes I wonder if we shouldnt be testing vascular drugs if such a thing exists? all the beta blockers do is make me feel like what blood i have is frozen and turn my hands blue Bren Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 5, 2012 Report Share Posted January 5, 2012 I too am sorry to hear that Bren - makes you wonder bout the med side doesn't it? I want so badly to get some help. The dizziness is the absolute cruellest for me. Perhaps I should try the florinef down the track. Does your zyrtec help? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 5, 2012 Report Share Posted January 5, 2012 Yeah I definately worry about the med side....sometimes I wonder if by taking them I am not just making matters worse. I hate doing a band aid approach....I believe if you never find the underlying cause ait cant be treated properly. The only drug that I found to be any help was Florinef but it has now started to be a double edged sword with its own side effects...I am having volitile BP swings and headaches even on the smallest doses. My docs are now investigating me for MCAD because of flushing, rashes, bone pain etc. The zyrtec helps some but it has its own side effects mainly makes the dizziness soo much worse and thats my worst symptom! So I am almost back to square one med wise.....oddly enough Zantac is the one that seems to make the greatest difference for me.....hang in there Allie! Hugs! I hate the dizziness too Quote Link to comment Share on other sites More sharing options...
dizzyallie Posted January 7, 2012 Report Share Posted January 7, 2012 I'm sorry you're having such a rough time Bren. Yes the dizziness is my biggest problem - HATE it! I hope they can help with the MCAD diagnoses for you - many hugs back Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 7, 2012 Report Share Posted January 7, 2012 I was reading some recent work about the association of IBS with POTS. While some of it may relate to GERD of neuropathy, perhaps there might also be a problem were excessive vasodilating molecules are present in the stomach circulation that is redirecting blood flow from the upper body to the stomach and which is worsened by postural stress. Normal Flow POTS. Quote Link to comment Share on other sites More sharing options...
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