POTLUCK Posted March 13, 2012 Report Share Posted March 13, 2012 Hi,I am new to the forum, and wrote information about my condition on my profile for anyone interested, so I will not take up space here. I just wanted to introduce myself, say Hi, and thank everyone for this forum. My interests are low flow POTS and Hyperadrenergic POTS and figuring out if I have them, the symptoms etc. The Cardiologist has said I have the Hyperadrenergic type based on the tilt test.I really think that it is wonderful that there is a forum like this and that people take the time to moderate it and keep things going, keep out spam etc. I have found that after, experiencing the limitations of some of the doctors I have been to and will not be back to, that hearing other peoples stories and knowing I am not alone has been just as helpful as the knowedge I have gained on the subject of POTS.Thus I offer my thanks to everyone for this site and the work they have done. Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2012 Report Share Posted March 13, 2012 WELCOME - Potluck! Hoping you find your answers and help us find ours. LOLIssie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 13, 2012 Author Report Share Posted March 13, 2012 Thank you, hoping so too. Eat your beets. Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2012 Report Share Posted March 13, 2012 NO WAY!!! I have a child horror story for beets. I hate them and they make me gag, but my parents wanted me to eat what they had put on my plate. Well, I was determined I wasn't going to and was made to sit at the table until midnight - because I wouldn't eat them and then I still got a spanking. So, NO - not going to eat my beets, and now you know why. LOL!!!! (By the way, my parents felt bad for doing that - later in their life.) And later, when I got older and had allergy test done - they proved to be one of the things I was allergic to. So parents, don't make your kids eat stuff they absolutely HATE - there could be a good reason.Issie Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 13, 2012 Report Share Posted March 13, 2012 Hi potluck! I have been dying to talk to someone like you. Can you tell us about your temporal lobe epilepsy? What was it like and how was it similar and or different than your pots? When I first got pots, I was convinced it was a weird partial seizure. Are your docs planning on continuing the propanolol? Quote Link to comment Share on other sites More sharing options...
corina Posted March 13, 2012 Report Share Posted March 13, 2012 hi Potluck, welcome at the forum. hope you will find the answers you're looking for! Quote Link to comment Share on other sites More sharing options...
Hope Posted March 13, 2012 Report Share Posted March 13, 2012 Welcome! Quote Link to comment Share on other sites More sharing options...
mwise Posted March 13, 2012 Report Share Posted March 13, 2012 Welcome to the best forum for support, knowledge and alot of love Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 13, 2012 Author Report Share Posted March 13, 2012 Thank you Issie, lemonsin2lemonade, corina, Hope, and mwise! Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 13, 2012 Author Report Share Posted March 13, 2012 Lemonsin2lemonade- My Mom and I were both diagnosed with TLE as I had severe dysphoria ( like the flu, feel rotten ) along with cognitive problems like decreased concentration, and working memory- so severe that neuropsych testing showed a borderline MR performance IQ back then, and the doctor who did the testing recommended the school records, I reported to him, be checked, as he did not think I could have accomplished this with my tested IQ. Both my Mom and myself had abnormal BEAM ( a quantitative EEG popular then ) showing TLE. My Mom had many of the "ictal" phenomenon like deja vu, and the more pathognomic smell hallucinations of burning rubber. ( these last 30sec to 2 min., with a maximum of 30 min. ) Later we have both had EEG's showing TLE and multiple types of epileptiform discharges. Neither of us has had convulsions. My Mom has CFS/ME. She also appears to have undiagnosed hyperadrenergic pots by the poor man's tilt test recently. I have found links between POTS, CFS/ME and TLE such as this complex article .... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022475/Note under autonomic nervous system that " In response to postural stress, 81% of patients with ME/CFS and no controls experienced ejection fraction decreases " and under neurology that " EEG data were able to discriminate with nearly 90% accuracy patients with ME/CFS from healthy controls and from those with major depression." Also this abstract http://www.ncbi.nlm.nih.gov/pubmed/21892413My interest in NO connects this even further as Dr. Stewart has shown the change in NO in "low flow" POTS to be neuronal nitric oxide. There are many articles on epilepsy and NO with extremely conflicting results. These are mostly in rat models-though I see myself more as a guinea pig. Both Valproic ACid and Selegiline that I was on for TLE have been shown to increase NO. Ref here...http://www.ncbi.nlm.nih.gov/pubmed/19703427 ( VPA ) and here... http://www.ncbi.nlm.nih.gov/pubmed/9721939 ( Selegiline ) Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 13, 2012 Report Share Posted March 13, 2012 Hi POTLUCK,welcome to the forum.I hope you'll be able to find friends here, support, answers to questions, etc. All the best,Alex Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2012 Report Share Posted March 13, 2012 Interesting articles - very interesting- in fact. I can see the relationship of ME/CFS to POTS with this and the parallels and connections. Also, the last article on the function of NO in relationship to Parkinson's and Alzheimer's makes so much sense in regard to my presentations. My first, and wrong diagnosis, was Parkinson's - I have some pretty bad tremors sometimes. So, that makes more sense and finding that my increasing NO is of benefit and so is using vasodilating things. More pieces of the puzzle keep coming together. Thanks for posting this.Sorry, that you have epilepsy on top of it all. I just meet someone who has really bad epilepsy and in talking with him, he reminded me of things we deal with in POTS - I wonder if that is part of his issues too. I'll be sure and tell him about you - when I see him this week. Quote Link to comment Share on other sites More sharing options...
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