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POTLUCK

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Everything posted by POTLUCK

  1. Kim, Thank you for the welcome, and I appreciate the comment about the name "POTluck" also. Bystolic is an interesting Beta blocker in that it is also suppesed to potentiate nitric oxide. Are there many other people on Dinet taking Losartan?
  2. anaphylaxing- I am wondering if Losartan has a diuretic effect by blocking angiotensin, and that concerns me. I really just chose it and Vit C as Dr Stewart was using them on "low flow" patients. The cardio was OK with it but really did not sound like he had much experience with it, and only a small amount of experience with Hyperadrenergic POTS. It's just try something and "potluck."
  3. 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/21892413 My 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 )
  4. Thank you Issie, lemonsin2lemonade, corina, Hope, and mwise!
  5. Thank you, hoping so too. Eat your beets.
  6. The beetroot juice tastes awful, I will admit. I wrote an intro post so I do not take up Jangles topic here chatting. I am interested on anything on Angiotensin 2 and also nitric oxide. Mom always said not eating those beets and spinach would catch up to me. ( I figure the brussel sprouts, brocoli and asparagus will probably turn out to be high in nitrates too. )
  7. 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.
  8. Thank you Issie. Will keep people posted with the Losartan- I have read too much and seen this illness act too strange to count on much day to day- hence "potluck", but today my HR seems to be dropping which is a good sign to me as I am thinking maybe the B-blocker can do its job if the losartan decreases "microvasculature" resistance. I was looking into other ways to raise my nitric oxide and tried Vit. C, which seemed to help me. I tried nitrates, first in the form of a giant spinach salad. then in the form of beetroot juice which has a larger dose. The salad may have helped, the beetroot juice definately lowered my b.p. but wore off and left me with a headache. I am obviously not recommending treatments, but I can recommend caution with the beetroot juice. There are many things that affect nitric oxide, but Dr Stewart's research seems to suggest 2 forms of POTS that have high nitric oxide, and I would think raising your nitric oxide in those cases might make someone worse.
  9. Hi, I just joined and voted on proabably 20-40 polls earlier tonight. I have been interested in seeing some of them and figured it helps the forum to have more results, so voted on any applicable. Hope that is a good thing.
  10. Hi, I am new to the forum. I found jangle's theory very interesting and have been reading a lot of Dr. Stewart's work about Angiotensin and nitric oxide. I am on Propranolol for hyperadrenergic POTS. I am adding Losartan currently with the idea that it will block angiotensin 2 type 1 receptors and thus raise nitric oxide, which if I am a "low flow" POTS patient should help with vasoconstriction. My blood pressure runs high lying and standing so cardiologist was willing to try Losartan on that basis. Also found this article on SARS virus receptor being the ACE 2 receptor (one and the same.) http://www.rndsystems.com/cb_detail_objectname_WI04_ACE2.aspx I was thinking maybe other viruses could use this as a receptor also and maybe the body could be mounting an immune attack against its own ACE 2 to fight the infection. If it did this would prevent breakdown of Angiotensin 2, and this could result in the elevations seen in some "Low flow" POTS patients. Anyhow, I hope you will all excuse me as I am new to the forum and jumping right in with an additional theory. I am not always thinking to clear with this illness so if I am off on my theory I hope you will excuse this also. best wishes to all, POTLUCK
  11. For the last 2 years on Propranol with brainfog type symptoms. Sunlight has gotten rid of my symptoms. I did not realize I had POTS till I went off Propranolol. I have spent all my time in the sun. My vit D should be sky high. It came out at 30.7. This seems very strange to me.
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