POTLUCK

Was the test for seizure done while you experienced that type of episode? There are many illnesses which can cause POTS which might have neurological symptoms. Regarding seizure, both seizure can cause POTS and POTS can cause seizures, or some disorders which cause low energy to the brain can cause both.

When I go to the link it says Health Rising but it says there is nothing available. One question I have about the idea of switching from aerobic to anaerobic metabolism is that I am not sure one can assume this occurs at the same point relative to heart rate that it would in a normal person. As an example if I run and my heart rate is going 20 points faster than my age calculated maximum heart rate for a normal person my age, well my VO2 max ( the oxygen I am taking in can not be greater than 100% ) I asked my Cardiologist about this and he scheduled me for a treadmill test to measure VO2 max and see. Unfortunately it is this Wednesday and I have been sick with a virus/flu for 12 days now, so hopig I will be able to run. I need to run real hard and go a good 20 points over my calculated maximumum HR to make the test work. I have wondered why I do not seem to make more progress in building up speed or increasing distance. ( It scares me that it might have something to do with this Mitochondrial ETC Complex 3 diagnosis - I have no idea if it does, but hope it is just the POTS slowing things down and it can be overcome. ) Maybe the test will tell when the switch occurs and I can slow down my pace to that heart rate.

Joyagh just posted a study on Vitamin C effect. Noted they used several antioxidants here. It was 45 elderly patients, rather than elderly age 45 patients.

I had seen this article before with his work. Had not thought about if a person with " Low Flow " POTS could take Vitamin C directly to help with treatment of POTS.

Exercise has had a very positive effect in my case. My original TTT was very clearly diagnostic. I have been treated with B-blocker (Propranolol ER) and been able to taper it to almost none via exercise this year. If I took a TTT on my low dose I would barely meet criteria.- based on poor mans's TTT done at home. A short period where I cannot exercise ( like now as I have the flu ) seems to increase my symptoms again pretty quickly. This effect does not appear to have anything to do with what type of shape I was in before I got sick. The first night I noticed symptoms was after a 10 mile mountain hike. I was in shape then. I attributed the symptoms to the hike but they worsened as time went on. It seems like many mechanisms could cause exercise to improve POTS other than prior deconditioning and improvement in Stroke Volume. These do not seem mutually exclusive to me. Epigenetic up and down regulation have been mentioned on here. Maybe running allows energy into the cell, thus decreasing an abnormal NE/Epi from the body at the cellular level. ( In other words maybe the cell - particularly brain cells - are not getting as much energy as they should so they send a message to increase NE/Epi, but this speeds the heart up to much and makes it overreactive. )

Sunlight is a huge topic for me but not one that most people on this forum relate to. Some people also have the opposite effect of me where they feel worse in the sun. The sunlight shining on my eye relieves my symptoms rapidly especially in the summer and in low lattitudes. ( below 25-30 degrees ) I realize this sounds rather crazy. I was however diagnosed with an illness 20 years ago named Seasonal Energy Syndrome by one of the original author's of the famous paper on another disorder seasonal affective disorder. This Medical Doctor said it is caused by Temporal Lobe Epilepsy/Simple Partial Seizures without physical seizures. He says it is very common. I have had many EEG's confirming this diagnosis. Recenty they have discovered a cell called "Intrinsically Photosensitive Ganglion Cells" ( try Wikipedia for a brief explanation) which regulate the bodies reaction to sunlight, day and night rythms, and even winter/summer rythms. It controls many clocks for all the bodies rythms by synchronizing a sort of master clock called the superchiasmatic nucleus ( found in the Hypothalmus. ) I cannot tell you how the illnesses connect in my case. However, I know that epilepsy causes release of free radicals which damage cells further, thus causing a continueing "Kindling" effect. This effect also has a direct effect on one of the 3 types on nitric oxide. (nNOS) I have been diagnosed with a Mito disorder ( ETC complex 3 ) as many know, and this can cause the epilepsy, and the POTS, the POTS can cause the Epilepsy, or the Epilepsy can cause POTS. This article I have posted before but it does show some of these connections. I wish I could duplicate the healing effects of the sun to my eye. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022475/ Regarding sunlight improving Temporal Lobe Epilepsy/Simple Partial Seizures via multiple means: http://www.ncbi.nlm.nih.gov/pubmed/21333455 here they found a decrease in actual seizures ( Partial ) that are measurable ( because they are complex rather than simple ) in a large scale study, on sunny days. http://www.ncbi.nlm.nih.gov/pubmed/19144500

http://www.stars-us.org/files/file/Clinical%20papers/110912-Hyper-POTS%20Proof%20copy.pdf

I think that pushing the heart rate so high may mean the body tells the heart to reset or adjust to a more appropriate range, which then helps keep Lying and even more so Standing heart rate down. Cardiologist/POTS specialist was very interested in this theory. We discussed if when my HR goes above the calculated maximum for my age what is the VO2 max doing. He suggested a treadmill test for oxygen consumption while running. The problem now is getting a day to do it. It is very difficult to have POTS and work without trying to do anything else. I do hope to eventually get the answer.

I had the primary doc recheck the metanephrines. It is hard to find anyone in my area who will do lying and standing NE/Epi which I would like to have done again. However the metanephrines are supposed to be more accurate for Pheo. They do not show the postural change to test for POTS. I also saw the Cardio POTS doc this week who said treating the HTN is a good idea in the long run but he agreed we should wait as my symptoms are not as bad now and he felt it is OK to continue at this level for now. Thanks for the response, and help.

Angela, Lexapro is an SSRI if that helps.

Naomi- so it appears in the first study that patients CBFV with POTS decreased more than normal people on tilt. Yet in the second study, even though POTS patients had more cognitve difficulties standing than normal, this time patients CBFV was no different in POTS patients when they stood. It seems like different results and I agreee with another study being needed, unless I am missing something else. The first study was POTS patients and the second was CFS/POTS patinents.

No replies. I thought Restless Leg Syndrome was more common in POTS, is that false?

Well it is nice to hear that I am not abnormal on this for a POTS patient. Answers are funny also.

Arizona Girl, Excellent questions and I was kind of brief, and unclear. First yes I meant HTN ( or Hypertension ) Second No, I am using the term Hyperadrenergic POTS very loosely, as definitions have been posted in various places. My Adrenaline and Noradrenaline are an entirely seperate story. They have never been done on the tilt table. My standing NE was done at Quest and came out over 8000 pg/ml ( the highest Quest goes ) with a high Epi of 270 pg/ml. I was referred by endocrinology to a Pheochromocytoma expert who ran a MIBG scan read positive by Radiologist, and a CT read negative by Radiologist. We did metanephrines and normetanephrines which were normal. Another radiologist at a major university center has now found a very small ( 7mm ) nodule that the report reads as correlates exactly with the MIBG. I do not think it is likely I have a Pheochromocytoma. My Diastolic is about the same standing and lying on 3.75mg Propranolol BID. It can bounce the reverse direction of the heart rate when I am standing, which appears to be the body trying to compensate. ( i.e. increase blood pressure to allow decrease heart rate. Then it goes higher than 95 into 100's.) I had a great deal of "dizziness, cognitive problems, all the time before my exercise, even to the point of of stumbling, fumbling things sometimes and felt awful" however I have never fainted or felt I would faint, thought there are many times when I simply felt so much better lying or reclining that I did. ( I would thus define the answer to Syncope/Near Syncope as no )

Thank you for the article. I read Neil Barnard's ( Lead author of paper ) book before Gary Taubes. They are sort of opposites though they agree on the idea of avoiding refined sugar such as high fructose corn syrup found in a lot of foods.

Panic attacks are not known for causing SVT episodes. The Holter monitor may show something helpful.

When I am running I reach my calculated maximum heart rate and generally continue running for a couple miles after this, often reaching 15 or 20 points above my maximum. If I slow down at maximum so I can keep my heart rate in the range of calculated maximum, I can continue running for a couple miles now. For anyone who does not know the most common formula for calculating your maximum heart rate is: 220 - ( your age ) = maximum Anyways, I wondered if people without POTS could go above their calculated maximum and how often this happens. Googling I found this thread: http://caloriecount.about.com/forums/fitness/happens-reach-max-heart-rate It answered my question, no this is not normal. However, I also found it funny with the comments such as betting $1000 you have not - I could take this bet and run another 2 miles, or "your heart implodes" or it can't be done. Do others, if they are able to exercise find there heart goes over calculated max if they exercise.

Issie glad it is working for you as noted by your experience with the oil. Keep us posted. I was recently referred to the diet by Cousins for Diabetes. I reviewed what I could find but can not find much evidence it helps Diabetes. I eat the opposite diet ( about 10% carb., unlimited protein and fat ) so a lot of meat- 20/24 oz slabs of meat every night. The adult onset Diabetes is likely a mitochondrial diabetes as my BMI is 24-25 and I have the diagnosed mitochondrial electron transport chain defect. I originally had fasting sugars in the 200-400 range. I discovered Gary Taubes good calories bad calories and began to think fats were not bad for you ( something you would not have convinced me of in the past.), and then Jenny Ruhl "Blood Sugar 101" who taught me that in Diabetes the sugars are what cause the worsening of the illness (does not apply type 1 ) and all the damage to the bodies organs. She also taught me that if you cut enough carbs out your sugars go down. For a diabetic you don't need any expensive tests, you just need blood sugar strips. Cut all your carbs out and sugars plummet as evidence by blood sugar strips in just hours to days. ( That is because with no carbs there is nothing to break down to sugar. Well to be inclusive Protein can break down slowly so you must still have a partially functioning pancreas or take insulin if you are Type 1 but most adult onset diabetics have some pancreatic function. ) Anyhow, I think that considering alternatives to normal medical approaches can be worthwhile, my own experience with a high fat diet is alternative to mainstream. Foggy brain seems to have some excellent points to consider. But if one weighs the risks of Issie's diet alone it does not sound very unhealthy.

OK, As I have tapered the Propranolol LA 80mg twice a day to 3.75mg twice a day I have been getting increasing Leg movements while sleeping, faling to sleep, when lying in bed if I wake etc. My legs are sore from this during the day, and it appears to be typical Restless Leg Syndrome which the Propranolol was masking. The doctor put me on Mirapex, and slowly raised the dose to the Maximum. ( I think this is 0.5mg ) I think it has helped but not alot. Does anyone have anything else they use for this? Either prescription or herbal/supplement? Thanks in advance for any thoughts.

Jen-many of the supplements are helpful for free radicals in the brain. Jangle mentioned fish oil. You might talk to your doctors ( particularly neurologist ) about N-acetyl cysteine, Carnitine, Ubiquinol, Vitamin C, I believe Melatonin, and other supplements that may help with reduction of Reactive Oxygen Species (ROS.) These are often increased as the result of prior trauma to the brain and by reducing ROS, one may improve function. There are many papers on this area in recent years ( literature search last 2 years brain trauma and ROS for example ) I have been reading alot in the area due to my own epilepsy which increases ROS and then is exacerbated in turn by ROS. Also ROS affect Nitric Oxide formation. Would be worth asking doc? My thoughts on the poll, looking on the brighter side is that I think it only shows the demographics of the people on Dinet forum and replying to the poll. There may be many 80 year olds out there with POTS, not reading Dinet, as they are not searching as hard as many people on here are for a cure so they can move on with their lives. Also there are different etiologies and different aspects of POTS that affect lifespan, so one persons lifespan may not be affected at all yet there POTS may be incapacitating, while another person may have a more life threatening illness but less morbidity. I was just noting on another thread that allowing my HTN to go untreated likely affects my mortality risk yet this is a minor worry. The fact that the Mito doc has diagnosed me with an illness that is normally progressive and deteriorating is not good for my expected lifespan, but I think this specialty is in its infancy so am not sellin the house, so to speak yet. When I told the Cardiologist POTS expert that things were at a 1/10 9 months ago he said it was a progressive illness and I was just doing worse. With the help of Dinet and the information such as the article Jangle posted from Vanderbilt on exercise in military cadets and some trial and error I am now doing far, far better. So much for the progressive part.

My Diastolic BP runs 95. This is above stage 1 HTN and on top of that I am diabetic so they recommend better HTN control not worse. Any medical book/journal on the subject would recommend treatment and talk of the severe life threatening dangers of not treating. I have previously asked the Cardiologist/POTS expert who treats my POTS whether supplementing with salt was a good idea in Hyperadrenergic type POTS with a higher blood pressure rather than lower blood pressure. He basically said that he did not know but thought I should. I have been. I doubt it is why my blood pressure is that high. I think it is because I have tapered the Propranolol to almost none. I am seeing my Primary and Cardio/POTS doc both soon. My guess is the Primary who knows nothing of POTS ( not stated negatively, many primaries have not heard of it. ) will recommend a HTN medicine. My guess is the Cardio will not bring it up unless I do. I will most likely go with the Cardiologist recommendations over the Primary, by asking him, as he is the specialist. My question is this: SHOULD HTN IN A HYPERADRENERGIC POTS PATIENT BE TREATED? I am extremely unlikely to have fainting episodes if I lower my blood pressure to normal, as I never have. It does not, however, make sense to me to salt load in order to raise blood pressure as a treatment and then take a blood pressure lowering medicine. As I am aware there is a greater percentage of patients with Hyperadrenergic type on Dinet than in the general POTS population, I was wondering if there is anyone who has run into this question, or anyone who can weigh in on it, especially anyone in the medical field. Also, if I was to take a HTN medicine any thoughts as to which would be less harmful to a POTS patient.

What seemed to be working for me is tapering only while obtaining a high heart rate exercising ( which my cardio cleared me on - I even did a stress echo with Heart rate ~30 points over my calculated maximum .) I have had some trouble tapering the last 3.75 BID of extended relaease propranolol, but this may be because I missed more running than usual due to being sick 10 days with cold/flu, and all the holiday stuff which anyone with POTS must know takes every spoon available ( i.e. uses up all your reserves of energy/capability ) Thus I can not say I have gotten any better in a month, though not worse either so I am feeling positive. I am not sure how raising my heart rate helps, but I have recorded a drop in my standing heart rate the day following a hard run many times now, and overall I have been able to taper the Propranolol drastically. Another idea that has occurred to me is it may be an energy thing. The brain does not function well without energy, it is one of the high energy demanding organs. Thus, if my cells are not able to take in energy properly ( such as due to my Mitochondrial Disorder: Electron Transport Chain Complex 3 ) the body may be increasing adrenaline to get energy to the cell. Running may help this by allowing energy into the cell faster ( my understanding is there is a cyclic AMP mechanism when one exercises that directly increases energy in the cell because when an individual is running their muscles require more energy) - thus the brain may be getting more energy, then the body produses less of the prior abnormal adrenaline reponse. A final mechanism is it may be causing less abnormal Reactive Oxygen Spesices ( ROS ) which I have read can be produced when the Electron Transport chain ( my mitochondrial defect ) is not working right. These can cause direct problems for the brain and other areas including my Temporal Lobe Epilepsy, but they also directly affect nitric oxide production. I realize that this is technical, may not pertain to someone with a different etiology for their illness, and is just speculation. I spend a lot of time researching these ideas and my illness, and thought that some people might appreciate some of my thoughts on all this. I am happy that my illness is doing better, and hope I will get well. I wish everyone else the best in searching for their cure, and hope that something I put down might help someone in finding that.

Had to go back to 3.75mg BID of Propranlol LA or symptoms are too bad and tachycardic standing. It is amazing that after being on such a huge dose my body would care about this little sprinkle.

In the first comment at the bottom what is GcMAF? As for the article, Bumtfanide is a diuretic which they are suggesting helps epsilepsy and might be used for autism by affecting chloride channels?

This was much very much higher 6 months ago and higher even on Propranolol 80 BID, but as I have been running and tapering Propranolol I keep standing HR under 100. When it goes over I back up and increase B-blocker a little. Running seems to help lower it somehow. I never passed out from my POTS ( hyper type ) but it has been very hard building up running and still very slow compared to a not POTS person. I am now on 3.75mg Propranolol LA and HR has crept back above 100 so I will probably go back to 3.75 BID, just trying to see if it will go back down, as I feel close to getting off Propranolol.