POTLUCK

http://eurheartj.oxfordjournals.org/content/early/2010/03/09/eurheartj.ehq069.full Sunlight makes me feel better and decreases my symptoms. At least there is research to support this idea.

Mayo clinic said it was very important to take a lot, and the grams of sodium translated to several teaspoons. I asked my cardio who treats POTS if I should take it if I have hyperadrenergic POTS being as the blood pressures are high and he was unsure. I therefore do take it but do not worry. It does not feel like it makes any difference to me. I just put lots of salt on almost everything. Kind of like my food that way.

I am happy to say I am back to work. I was going to lose my job if I could not go back. I am doing better. I attribute that to: Sunlight- still makes me feel better and has more effect than anything except the Propranolol LA which I am awful without at 80mg morning and night. Exercise-walk/run 2 miles total about 3-5 times a week and walk at work a fair amount. Not being stressed that I might have a pheo. ( That 3-4 week period definately made me far worse though other stress has not had much effect. ) ( Also misc. little things like coffee helps, but has a reverse efffect as it wears off, lack of sleep makes me far worse, eating regular and enough helps-long periods with nothing makes me worse.) I have not had a day without any "dizziness" at all, but have days with long periods of no symptoms. Cognitive symptoms-brainfog pretty much only come with dizziness feel, and are much better. HR is lower lying and standing and difference is lower by a little. ( but I am on large dose propranol. ) Anyways, I am very happy about it, and just hope to hang in there. Best to all!!!

I have not done the Levine program but am exercising more. If I can ask how much better do people feel who did the program? ( like 1-10 scale ) Do you go off your meds on the program or can it be done on meds? Is the goal heart rate based on something? ( like 220 - age= maximum and 80% max for cardio training was the rate I learned before POTS ) glad it has helped everyone some!

I am not clear on what you meant they are looking at now. The article is a Stewart/Medows publication. Are they doing something since then that you are aware of? I would like to stay up on it. I was looking at this thread again as it seems the oxidative stress ties in with both of the illnesses ( Temporal Lobe Epilepsy and POTS ) that I have, and they connect. Also many of the herbal/supplemental meds seem to work via oxidative stress reduction mechanisms.

Jangle- Your exercise program is inspiring and I am glad you are doing so much better. I have started a low level cardio workout myself by mixing up running and fast walking several times per week with my plan being to increase it as much as I can without overdoing it. I am on Inderal 80 BID. I plan to try and cut the Inderal back a little if I can lower my resting HR as time goes on. ( with my doctor of course )

The doctor I see for POTS specifically recommended swimming. I had asked him about running. I was a runner in the far past and hiker before I got sick in 12/09. The doctor's said many people find the water provides support/compression while exercising. I personally do not like swimming as well.

Corina-thanks, it may help me. As soon as I was put back on Propranolol I found my body needed more and more rapidly, right back to that level I was on for 20 years, or my HR stayed too high. But some people on this forum seem to be lowering their HR via exercise, and I am thinking maybe I could taper the Propranolol while increasing the exercise. From Inderal LA 80 BID down to LA 60 BID I can do this, but below that level they do not make a long acting form. These meds ( B-blockers ) wear off quickly so the short acting form causes my HR to bounce all over. It is very distressing. I think my cardio ( he treats the POTS ) would be willing to let me try this approach. I do not want to rock the boat with anything much as returning to work very soon, so need to be baseline functional. But exercise, especialy at a moderate HR, rather than high HR, and building up what I can do may be good.

Thanks for the post Rama, Interesting " These findings suggest that Ang II receptor activation in youth triggers the upregulation of inflammatory cytokines and the production of reactive oxygen species, thereby inducing later insulin resistance and hypertension. " And a free radical scavanger blocked it. This goes back to some of the stuff in that long article about oxidative stress. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022475/ I have the abnormal EEG showing continous epileptiform discharges in the temporal lobe, the POTS and the adult onset diabetes. Take Propranalol for that matter in large dose for 20 years, Annaliese.

I should have definately noted that the advice of those saying "suck it up" does not necesarily sound like the best, but you seemed to realize that. Also that side effects such as "stomach" (gastrointestinal) are usually dose dependent, meaning more with more dose, in SSRI. ( Not sure if I just went past what I am allowed, as far as not advice giving, but if so I guess will be edited. I am trying not to. )

I experienced the opposite with Propranolol, where without very high dose I was on earlier ( before diagnosis ) my HR would not go below 100. I still wonder if being on Propranolol LA 80 mg twice daily for 20 years made me used to it and unable to taper off and this is the cause of my POTS - like an addiction to Propranolol. Anyways, does the Zoloft measurably affect your HR? That does not sound good. Other than saying contact your doctor of course, what is the dose, could you cut it with docs permission by phone. ( meaning drug store pill cutter ) SSRI's common side effects are stomach type side effects. Something called Akathesia is not as common but very uncomfortable side effect. I do not know if any of these facts are helpful.

The gatorade was high in sugar ( I am Type 2 DM so try to avoid ) and I drink a ton of water. I have been drinking Propel zero but am realizing that at 50 cents a piece plus tax, they add up, so may go back to water. Lots and lots of salt. I like it on my food. A lot. Enough, my girlfriend does not like the taste. I do like it though. Recently I have been eating more frequent somewhat smaller meals. ( basically not going as long with an empty stomach ) and personally find this seems to be hepling. Not sure if they recommend that.

Firewatcher, Just reading your reply. I am sorry they said that about it being "shot" as it really is no way to treat a patient anyways. When you say they expect it and are waiting, you mean to see if levels will change? Does this mean someone is checking and following levels? I hope a LONG time also.

Thank you, I am accepting it and moving on, which in itself is positive. The stress of waiting hoping to have a pheo for 3 1/2 weeks really increased my symptoms an amazing amount. I have also been eating more evenly and wonder if this is helping me with other symptoms. ( Sometimes it is hard to tell what causes what. ) Overall stress has not seemed like that big a factor, as far as I can tell, to my symptoms. ( meaning "mental" stress - physical stress like stopping my beta blocker causes a huge increase in my symptoms. ) However, this 3 1/2 week period of extreme stress was causing severe symptoms of almost every type I get even on my usual inderal dose.

I think if deconditioning caused POTS in an otherwise healthy person there would obviously be a much much larger poulation of people with POTS and it would be an illness more common in populations which could not get, or did not get as much exercise. POTS is more common ( not read only ) in younger people. I have started exercising again. I guess the question in my mind is not if it caused it, but if it can cure or even help it.

Bren- I have wondered that myself Linda- I used to do Tae Bo at Billy Blanks main studio in LA ( valley side of the hill ) You only had to pay when you went. It was loud, fun, the stars used to go, mostly women, ( a good thing for me as a guy, ) and the schedule was all day long so you just called to hear who was doing which hour of class. I liked his adopted daughter's ( I only note adopted because of the race difference, many did not realize she was his daughter.) class the best- incredibly high energy. He liked to do these weird dance moves to much. His brother used the weights alot to tire the class. His sister was real good with her martial arts form and her class was my next favorite. But his daughter led us right out the door and down the street in bare feet one time she was so high energy. Tae Bo might not be the best at this stage for me.

Follow up: 1. Epi 2-3 times normal & NE 8000 Lying and sitting. ( I am told had to be lab error or Pheo. ) 2. Endocrinologist ordered MIBG & CT Abdomen and Chest 3. Pheo specialist said 99% sure I had Pheo. 4. Radiologist said I have left Pheo after MIBG. 5. Pheo specialist said no Pheo ( based on negative CT & he read MIBG as negative.) 6. Pheo specialist changed mind and said"50-60%" I have pheo. ( based on records and NE so high he said, but said still saw MIBG as negative.) 7. Metanephrines came back negative (normal range) 8. Pheo specialist says I do not have. ( normal metanephrines makes it extremely, extremely unlikely it is Pheo) At this point I can say I do not have a pheo, however I am sure one of my doctors will do a follow up metanephrines down the road to check them, as it is not expensive. I recommend anyone with Hyperadrenergic POTS consult with there doctor about whether they should have there metanephrines checked, not because it is likely they have a pheo but because it is a simple enough test (plasma or urine lab ) and in rare chance if positve maybe someone on this board gets cured.

I still wonder about the dizziness/brainfog - basically my symptoms for over the first year of POTS, occurring only when no direct sunlight. ( Not as much at night either. ) And does this have to do with my vitamin D level of 18 a week ago? ( low ) It seemed like the sunlight effect on me is due to light to the eye. I suppose these things seem as crazy as initially descriing my POTS symptoms to the doctors, but now that I have the tilt table test with a clear cut result, does not make me any less sure that on sunny day in the direct light my symptoms were going away. If I were crazy it would not explain my tilt table test, nor elevated HR off B-blocker.

Having a primary and 2 specialists plus evidence of it working may help a lot. Your own advice not to worry is the best but sometimes for me the hardest.

I do not think deconditioning led to my symptoms as I was a frequent hiker and runner when symptoms came. However, it may help my symptoms to get in shape now, a lot of the literature seems to indicate this, and doctors seem to suggest this, and it can not hurt me so I intend to try to get in better shape. I do not have syncope so have started walking daily and intend to increase to running/walking, then running, then increasing distance. So I voted for "not at all."

My endocrinologist was very irritated when he could not find the code for POTS the other day. I did not know to tell him there is not one. That is terrible they would not allow for these drugs Jen. There are many, many medications used for off label purposes. It just means the company that makes the med does not feel like spending the money for the series of studies required for approval. This is often true of a medicine used for another purpose that has been around for a while, now being used in a new market, as the company feels they will not turn enough profit to be worth it. Many medications can be used for multiple purposes and the doctor is the one who makes that decision. It is sad that insurance might dictate that only medicines approved for a specific use will be used for that, not what the doctor thinks is best. ( I do not know about the how the system in the Netherlands works either, as I know nothing this. )

The intrinsically photosensitive Receptor Ganglion Cells (ipRGC) in the eye were recently discovered, and connect to the Superchiasmatic Nucleus (SN) ( a spot in the ) of the Hypothalmus. They send a message telling the SN whether it is day or night to set the body's master clock, which is the SN. This master clock ( Superchiastmatic Nucleus ) sets the clock for every cell in the body. Every cell has its own genetic clocks to function syncronized by this master clock to control endocrine function, liver, pancreas etc... cycles. I do not know what this has to do with POTS but in my case I believe sunlight does.

This is a very interesting topic to me. I felt from the beginning that I ONLY had episodes of "dizziness" as I called them brainfog/lightheaded/trouble concentrating/decrease in working memory when NOT in the direct sunlight. I was diagnosed with Temporal Lobe Epilepsy and Seasonal Energy Syndrome many years ago and the doctor who made the diagnosis cured me for 20 years till I had these spells. I have thought the cure may have been the beta-blockers given for tremor, that was an antiepileptic side effect. Anyways, the direct light does not get rid of my spells off Propranolol, and not sure now as recent stress. ( Pheo - seperate topic ) I have done a lot of research on sunlight. One think is the number of skin cancers is NOT correlated to amount of tan, it is correlated to # of sunburns. So I do not worry about being in sun. Another is one of the original authors of the (SAD 1984 Rosenthal et all. article) published on red light being effective in the fall/winter to increase energy and blue or green in the spring to calm the person. Most of the authors and literature shows decrease SAD closer to the equater. Different authors have published on this being due to longer time zone of day, earlier sun rise, color of light, or total amount of light in the day. Color of light made absolutely no difference. Morning light helped but it may have actually been the morning walk every day was helping. Getting lots of light helped for a short period, but did not "cure" me. Artificial lighting does not work for me ( like bright bulbs ) but for a long long time I had no symptoms while in the direct sunlight. All of this changed after I was tapered off B-blocker. Despite all of the sun I have gotten, my vitamin D level was 37 last month, so retested 30, so had another doc run it last week and it was 18. My multivitamin tablet is also supposed to give me a little. I do not know why this would be low. ( normal is over 30 )

Thanks for info. on integrative medicine. I did look, quick for now, more later. Andrew Weil, M.D. also came up and I have heard his name before also.

What is an integrative MD? I was thinking I needed a diagnostic MD like the TV show House but found out they do not exist for real.