ramakentesh Posted March 17, 2012 Report Share Posted March 17, 2012 Easiest way would to see the response to a medication that supresses msna like melatonin or high dose fish oil. Good response might suggest hyper problem, bad response might indicate compensatory hyper. Problem is that most neuropathic and ang II pots have reduced net as well at least according to papers.Pots could even be a manifestation of selective cardiac denervation in some. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 18, 2012 Report Share Posted March 18, 2012 Easiest way would to see the response to a medication that supresses msna like melatonin or high dose fish oil. Good response might suggest hyper problem, bad response might indicate compensatory hyper. Problem is that most neuropathic and ang II pots have reduced net as well at least according to papers.Pots could even be a manifestation of selective cardiac denervation in some.OK, Melatonin is supposed to attenuate postural muscle sympathetic nerve activity, but it also reduces NO. In my case I take a low dose melatonin at night, because Propranolol blocks melatonin and I am on a very large dose. ( Inderal LA 80AM, 60PM ) Is it common for POTS patients to take doses that high? I tried to cut it to 60/60 the other day as my HR seemed low in the morning and I was hoping the Losartan was having an effect, but the HR went to a standing 115 by mid afternoon, just by lowering it to 60 once. ( That should not make much difference as it should be at a steady state but it did. ) What does fish oil do? how could that be used as a test?It seems someone should be seperating patients with an algorithm like doctors use to treat most illnesses. "POTS" is really an arbitrary definition of your HR going up 30 points or a HR over 120, and there can be infinate reasons for this. I suspect mine is compensatory as the dysphoria/smothered feeling/lack of oxygen feeling/brainfog/cognitive problems, which are really all the same, gets worse when the HR goes lower on Inderal and better when the HR goes to 100 or more. Also the blood pressure never drops off. A low BP for me is below 120 systolic or 80 diastolic, and without meds it does not go that low. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 18, 2012 Report Share Posted March 18, 2012 Even with Inderal 140mg a day alone it does not go that low. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 18, 2012 Report Share Posted March 18, 2012 I'll pm you. Quote Link to comment Share on other sites More sharing options...
issie Posted March 18, 2012 Report Share Posted March 18, 2012 Rama,I want to know about the fish oil too? Just was waiting for a reply - hope you're not just PM'ing that answer too. LOL Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 18, 2012 Report Share Posted March 18, 2012 Fish oil also reduces postural MSNA firing rate. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 18, 2012 Report Share Posted March 18, 2012 POTLUCK - how did you feel after taking Valproic Acid?There was something published in 2010 demonstrating that it upregulated expression of functional NET through epigenetic modification. It should help a hyper POTSies with NET deficiency - in theory - providing the actual gene itself is functional but deficient for acquired reasons (ie an autoimmune mechanism or epigenetic gene silencing of promoter region). Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 18, 2012 Report Share Posted March 18, 2012 Rama,Thanks for the info. The answer to your question about the VPA is it all went together and cured me 20 years ago. ( see my profile also. ) 20 years ago I developed this terrible dysphoric condition with cognitive problem so severe that my IQ test showed a performance IQ borderline MR. I remember not being able to tell the doctor what was missing on the picture of a frog that he later told me only had 3 legs. I suggested the background was missing and could not think of anything else. One of the doctors I saw after months of this, diagnosed me with TLE and sent me for BEAM (Quantitative EEG) which also confirmed it. I later had a repeat BEAM by another doc and have had several EEG's showing TL epileptiform discharges. Anyways, this doctor rapidly tried a number of things he uses for these TLE patients (mostly antiepileptics, some DA agonists etc.) The combo that worked was ( Selegiline, VPA, T4-for hypothyroid he found and sent me to Endo for, and Inderal 60 BID to get rid of the tremer caused by VPA ) I got completely better, within a few weeks to months, and stayed better till Dec 2009. I often wondered if I should stop the meds as I had no idea if they were even doing anything. I took the exact same meds for 20 years and was perfect. ( Top grades in school, running, hiking ) ( primary doc increased Inderal to 80BID for mild HTN ~2007 )Then Thanksgiving weekend 2009, a stressful one, after a 10 mile hike, that evening I noticed some "dizziness", noticed it all day the next day, ended up getting checked out at the ER and the only thing wrong was elevated CPK-it runs 2-4x norm. They of course said your fine, drink lots of fluids. The "dizzy" feel is very similar to the dysphoria of 20 years ago, goes with working memory problems or "brainfog" and other "cerebral hypoperfusion" type problems. The only thing that helped was direct sunlight. I spent the last 2 years trying to figure it out via many doctors ( Mayo Neuro etc., ) research etc. Late in 2011, I tried going off meds, one by one, tapering slowly off Inderal resulted in HR ~80-105 Lying and over 140 Standing and bouncing alot. We ( myself, cardio. more than endo., primary ) thought it might be withdraw from Inderal, might be POTS, but it did not get better, if anything worse with time, eventualy had tilt test end of Feb 2012 and DX POTS.So the answer to your question about VPA is I got completely better on it 20 years ago but could not tell you which RX did it. Maybe, I had POTS then and the Inderal ( for tremor from VPA,) got rid of it. Clearly the TLE & POTS go together, but what is causing what, and what is the cure I can not tell you. ( As the article I posted on kindling shows the TLE EEG is very common with POTS. ) Quote Link to comment Share on other sites More sharing options...
issie Posted March 18, 2012 Report Share Posted March 18, 2012 potluck,How has the addition of the lorsartan been for you? Any noticable improvements?Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 18, 2012 Report Share Posted March 18, 2012 http://www.landesbioscience.com/journals/cc/BaylesCC9-22.pdf Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 19, 2012 Report Share Posted March 19, 2012 http://www.landesbio...aylesCC9-22.pdfRama,This appears very interesting as histone deacetylase (HDAC) inhibitors that you were referring to with Valproic Acid in the article, seem to be newly emerging in treatment for a variety of inflamatory diseases, muscle disorders etc. One of the mechanisms of action appears to be by increasing eNOS activity. Apparently histone deacetylase decreases eNOS and inhibiting it thus increases eNOS. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 19, 2012 Report Share Posted March 19, 2012 I actually asked my ANS doctor about this, and she just said I had Pure Autonomic Failure, but according to what I have read, I tend to think I am Hyper/Low flow POTS, (Hypertension with flushing, and sweating) with some neuropathic thrown in the mix!! I have a neurologist, too. I wished I had obtained more blood work, before getting on all my cardiac meds, so that I could better determine this, but after suffering with symptoms for 13 years, and feeling absolutely awful, I just wanted to feel better. I figure at this point, I will continue to take the meds I'm on, because they make me functional most of the time, and to be honest, I just want the best quality of life I can have. That's my goal. Don't get me wrong, I am very interested in the science, and if I do get progressively worse, I will seek medical attention or search further to feel better. I am curious about NE and dopamine levels at the moment. I still have lots of unanswered questions.... Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 19, 2012 Report Share Posted March 19, 2012 POTLUCK, my regular internist did a acetylcholine receptor antibody test, btw...I was negative. I had lethargy and droopy eye lids, so I asked her to do the test for me, and she did! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 19, 2012 Report Share Posted March 19, 2012 OK - to clarify:http://www.ncbi.nlm.nih.gov/pubmed/19808400In this study a group of POTS patients have reduced NET expression and they are wondering whether it is the primary problem. Unpublished data indicated they thought the NET was reduced through epigenetic mechanisms. So they went on to test whether histone deactylase inhibitors would correct the abnormal gene promoter methylation. Clearly in the study at my post above - although published in a backwater publication - suggests that the use of histone modifiers like Valproic Acid resulted in an increase of NET expression - which would be ideal IF that was the primary problem and not a consequence of POTS. This is not looking at the NOS connection at all. While Stewart Et al have found issues with NO, and Garland/Robertson found some POTSies had weird NO genes, they did a test where they inhibited NO in several ways and found it did not alter POTs hemodynamics at Vanderbilt conflicting with Stewart and Medow. Quote Link to comment Share on other sites More sharing options...
sonyasmith12 Posted July 23, 2012 Author Report Share Posted July 23, 2012 I went to Vanderbilt back in April.After 10mins TTT Standing-My bp did increase >10 and heart rate was >30 increased and norepinephrine was 1260,Dr.biagionni told me I was had hyperadrenic POTS. Quote Link to comment Share on other sites More sharing options...
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