ramakentesh Posted April 25, 2012 Author Report Share Posted April 25, 2012 Rama, don't worry about what that dr said. Desperate people are already self medicating. The dr should more concerned why there are so many desperate people in the first place. Education is need across the board for all of our physicians. Imagine taking a poll of how many people educate their own physician and how many suggest their own medications to doctors and it turns out helping them the most... This syndrome if frustrating to say the least! Thanks for your hard work!I dont mind at all. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 25, 2012 Author Report Share Posted April 25, 2012 Viagra might work if cerebral vasoconstriction is an inappropriate response to something else. A working model of many with pots is a resistance to NE in a way (because of other vasodilators in many) in the stomach or reduced innervation in the legs that forces the body to up NE levels to vasoconstrict but the heart and brain are not resistant and are subject to the full effect of the excess NE levels. LOL - simplified but kind of accurate. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted April 25, 2012 Report Share Posted April 25, 2012 Thanks Rama Quote Link to comment Share on other sites More sharing options...
issie Posted April 25, 2012 Report Share Posted April 25, 2012 resistance to NE in a way (because of other vasodilators in many) in the stomach or reduced innervation in the legs that forces the body to up NE levels to vasoconstrict but the heart and brain are not resistant and are subject to the full effect of the excess NE levels.Yeah, and when that happens over years of it - the heart and brain can't take it any more and there has to be relief from it. LOL figuring out what would be the least damaging thing to do for that relief - remains to be figured out. You fix one problem - but, create another one. (Just ask me about it ----lowering NE levels with clonidine - creates more pooling and edema, more dizziness and tiredness - but, your head and your heart sure do feel better. LOL )Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 25, 2012 Author Report Share Posted April 25, 2012 That doesnt apply to everyone, just many. Sometimes it is a trade off - if the surges are a problem you take something for that, sometimes correcting the underlying problem does the same. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 25, 2012 Report Share Posted April 25, 2012 Impressive to say the least.Thanks Rama.On a side note lots of doctors and nurses never even heard of most of the meds on that list - I met quite a bunch recently. Quote Link to comment Share on other sites More sharing options...
CC101 Posted April 27, 2012 Report Share Posted April 27, 2012 Rama this was incredibly generous of you to dedicate your time and energy. On top of this you answered all the requests of others on here since you are so knowledgeable on this subject. Thanks a bunch! Quote Link to comment Share on other sites More sharing options...
issie Posted April 27, 2012 Report Share Posted April 27, 2012 I personally couldn't use it - But, Dr. G is using guaifacin for HyperPOTS people. I do better on the clonidine.Issie Quote Link to comment Share on other sites More sharing options...
beggiatoa Posted May 31, 2012 Report Share Posted May 31, 2012 I was going to write a new post but this one is very impressive so I'll add this here. Found some great ANS stimulants. They work via different mechanisms but the final effect is the activation of the autonomic nervous system.Capsaicin - believe it or not! Works very, very well !Yohimbe - used a liquid extract and titrated slowly.Chicken Essence tablets - you read right ; ) I haven't tried this but I'm curious.CDP choline or alpha GPC - acetylcholine precursorsGreen tea The combined effects of capsaicin, green tea extract and chicken essence tablets on human autonomic nervous system activity.Shin KO, Moritani T. SourceLaboratory of Applied Physiology, Graduate School of Human and Environmental Studies, Kyoto University, Kyoto 606-8501, Japan. AbstractThe purpose of this study was to investigate whether combined capsaicin, green tea, and chicken essence tablets (CCGC) enhance human autonomic nervous activities (ANS) associated with thermogenic sympathetic activity without any adverse effect on the cardiac depolarization-repolarization period. Six healthy males (25.2 +/-1.7 y) volunteered for this experiment. Autonomic nervous activities were examined 5-min at rest per 30-min for total 1.5 h after consuming chicken or CCGC or placebo tablets at random on separate days. Using heart rate variability power spectral analysis, we assessed human autonomic nervous activities. In comparison to chicken essence or placebo tablets, it was observed that the consumption of CCGC significantly increased human autonomic nervous activities [Total power representing over-all ANS activity; CCGC trial 160.2 (50.0) vs. placebo 92.8 (53.3)%, p < 0.05; VLF, very low-frequency power associated with thermogenic sympathetic activity: CCGC trial 235.5 (101.7) vs. chicken 130.5 (52.9)%, p < 0.05; LF, low frequency power representing combined sympatho-vagal activity: CCGC trial 199.8 (59.8) vs. placebo 120.6 (49.2)%, p < 0.05] at 60-min and 90-min. There were no significant differences in heart rate corrected cardiac recovery time (RTc) or QT interval (QTc). In conclusion, the consumption of CCGC enhances thermogenic sympathetic activity compared to that of chicken essence or placebo tablets. Therefore, these results suggest that combined capsaicin, green tea, and chicken essence tablets may be a beneficial food ingredient improving human autonomic nervous activities, particularly thermogenic sympathetic activity as a modulator of energy metabolism without any adverse effects on cardiac electrical stability. PMID:17616002 Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 31, 2012 Author Report Share Posted May 31, 2012 patients with NET deficiency are hypersensitive to clonidine and yohimbine. They have paradoxical reduced central a2 activity with increased peripheral sympathetic transduction. Weird eh? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 31, 2012 Report Share Posted May 31, 2012 very weird! How do you differentiate btwn NE raised levels and NET def or are they the same? B/c if they are then clonidine doesnt sound like a good hyper pots treatment.. Quote Link to comment Share on other sites More sharing options...
beggiatoa Posted June 1, 2012 Report Share Posted June 1, 2012 Ginkgo and folic acid. From 1989! Ginkgo biloba extract and folic acid in the therapy of changes caused by autonomic neuropathy Abstract10 patients suffering from neuropathies caused by various diseases and with an autonomic disregulation of skin were treated intravenously with a new combination of 87.5 mg Ginkgo-biloba-extract standardized to 21.0 mg Flavonglycosids and 3 mg folic acid during 14 days. The autonomic nerve-function was measured immediately before onset and after the end of therapy with the hyperthermal laser-Doppler-Flowmetry. Additionally pain, superficial and deep sensibility were described. After the end of treatment the autonomic nerve-function was improved in a significant manner (p less than 0.01). An improvement of the described parameters for pain and for perception could be observed too. Therefore this new combination seems to be suited for treatment of polyneuropathies. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 5, 2012 Author Report Share Posted June 5, 2012 very weird! How do you differentiate btwn NE raised levels and NET def or are they the same? B/c if they are then clonidine doesnt sound like a good hyper pots treatment... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 6, 2012 Report Share Posted June 6, 2012 Rama- I get how NET def leads to NE high levels. If the commuter bus is 1 hour late there will be more passengers waiting on line to take it.. But how in the world can a NET def have normal NE levels when the came amount of people commute everyday. Is their NE away on vacation lol That would mean they actually have a low level to begin with.. Can you send me a link to the group that did the peripheral nerves NET study, I'd like to read itBut seriously Dr. Grubb postulates that hyperPOTS patients can run high then shoot up and then crash. That's the balance you once mentioned.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 6, 2012 Author Report Share Posted June 6, 2012 Rama- I get how NET def leads to NE high levels. If the commuter bus is 1 hour late there will be more passengers waiting on line to take it.. But how in the world can a NET def have normal NE levels when the came amount of people commute everyday. Is their NE away on vacation lol That would mean they actually have a low level to begin with.. Can you send me a link to the group that did the peripheral nerves NET study, I'd like to read itBut seriously Dr. Grubb postulates that hyperPOTS patients can run high then shoot up and then crash. That's the balance you once mentioned.. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 6, 2012 Report Share Posted June 6, 2012 "But seriously Dr. Grubb postulates that hyperPOTS patients can run high then shoot up and then crash. That's the balance you once mentioned"According to my tilt table this is exactly what happens to me, Grubb diagnosed me as hyperpots and put me on labetalol. He mentioned clonidine, but I told him that was awful for me, with my body demanding more and more to keep my high blood pressure on standing down. It was similiar to getting a addicted to a recreational drug and coming off of it was scary.I'm fortunate that I'm good at avoiding the activities that lead to the spike and crash. Those crashes are very dramatic and sudden with lots of symptoms and then my legs to turn to Jello and won't hold me up, once down I can't get up, until the episode passes. I had no BP on my tilt and I was still standing for a bit, and then what happens to me in real life played out and I actually did pass out on my TTT. In real life I'm on the ground before passout can happen. I haven't had that happen in a long time now, so maybe my treatments are working. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 7, 2012 Author Report Share Posted June 7, 2012 In NET deficiency there is more likely abnormal cerebral autoregulation rather than depleted NE. But who knows. Most of the doctors dont claim to for a start. Quote Link to comment Share on other sites More sharing options...
issie Posted October 5, 2012 Report Share Posted October 5, 2012 Bumping this up for the newbies. Rama, put a lot of time and work into this and it is geared towards what these things do for a POTS person. Thought you may enjoy seeing what he found out about these things.Issie Quote Link to comment Share on other sites More sharing options...
Natops Posted October 5, 2012 Report Share Posted October 5, 2012 Thank You issie for the bump. Thanks Rama for posting it. Very informative. Quote Link to comment Share on other sites More sharing options...
spinner Posted October 5, 2012 Report Share Posted October 5, 2012 Ramek, THANKS, this is a great post and will be something everyone here will want to print up.Great job. I plan on "trying" licorice (was previously afraid it might make me tachy) this weekend, start small.I'll go through your list and learn about them. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 14, 2014 Author Report Share Posted January 14, 2014 You can add:Phenylephrene - central and peripheral alpha 1 agonist and vasoconstrictor (now being fairly commonly prescribed although it is not restricted)Synephrine - peripheral alpha 1 agonist made from bitter orangeDiosmin - vasoconstrictive via indirect mechanismMethylsynephrine - vasoconstrictor once used for postural hypotension and now as a dietary supplement for weight loss. Experimental. Quote Link to comment Share on other sites More sharing options...
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