POTLUCK

Continue low dose beta blocker 3.75BID and trying to run (average ~8 mi per week) Improved after flu period above and at baseline, but recent increase in HR lying and standing and accompanying increase in fight or flight symptoms with largest problem ( insomnia combined with RLS, and bursts of high HR at night) Doctor has me on Ambien and just added Gabapentin at night, which has seemed more helpful to sleep than Ambien did initially (may be a temporary effect.) I have had a lot of personal stressors, partially related to illness and this seems a likely cause of increase POTS symptoms. I am hopeful that as these stressors decrease the POTS will improve, sleep will improve and I can return to baseline and continue working which is important to surviving. Hope I am not putting to much self info. here, just thought I would update thread. Thank you again everyone for support!

KJay- Thanks for the thoughts on the PET! It is supposed to be better diagnostically than the other scan tests. I have not been seeing docs much for a while and just made an appointment with a new primary. He mentioned PET in passing. I am seeing him again soon as it is overwhelming to the doctor when I see a new one there are so may docs and diagnosis and all for them to understand. Was thinking might be overkill to get PET, and just repeat plasma metanephrine and normetanephrine. I have read such an incredible amount on this subject. I will of course go with my doctors advice but he is likely to be interested in my opinion. You are right the very tiny possibility that a Pheo was missed ( In light of several positive tests) is still worrisome to me as it is such a serious illness to overlook.

Thank you for the replies. Chaos- Do you know what antibodies they were testing for at Mayo in regard to the 14%, and is this a test that is available to a patient who wants it? The JAHA study is very hard to understand both medically and statistically. I have a little insight medically ( I.e. B1 & B2 receptor antibodies acting as both agonists and antagonists and also thus causing reflex actions such as an increase in the persons own Epi/NE response) This makes a lot of sense and could account for many "odd" things in POTS ( such as my more Hyperadrenergic POTS picture, or people's differing clinical pictures all with the common denominator of a change in their adrenergic responses) Statistically it is very unclear to me. The study does not discuss potential flaws in the methodology and research. What is the chance of error-that people did not have antibodies to the receptors or that some did not? I am sure some researchers in POTS must be more clear on this from reading the study or discussing it with the researchers who completed it. Or the researchers that completed it must have some ideas on the question of potential error. I have not found much in the way of discussion of this. ( I agree it is an excellent thing to have POTS discussed in JAHA, either way, to draw more attention to it, and I am all in favor of the large study to continue research into this.)

It seemed like a bad idea to steal the other thread on this. My computer will not let me post a link to the article so if someone else can that would be great. " Autoimmune basis for Postural Orthostatic Tachycardia Syndrome" The questions are: 1. It appears all 14 POTS patients and none of the controls had autoantibodies to Adrenergic Receptors AND varying effects. (agonist/antagonist, B1, B2 etc.) A. How sure are they that the POTS patients had autoantibodies, and the controls did not. (i.e. It seems common sense wise that if ALL POTS and no controls have something it is not chance, but is there an element of chance in the results for the study subject?) In other words are they showing up with slightly darker staining for these antibodies than controls and what is the chance this is error? B. How sure are they of the effect of these antibodies? Can anyone that knows much about recent research etc. (and some people on this site are incredibly well educated on POTS) comment on how sure this study and the other study on OI and autoantibodies make it that the etiology for a large number of POTS patients illness is autoimmune????? The question I am asking is not, does everyone with POTS have this, but how sure are they that for a large percentage of POTS patients there is an autoimmune etiology???? The study discussion does not really go into much detail about potential pitfalls in the research methodology etc. and it is really too complex for most people to understand but it, but it seems that many places are doing research on POTS and must have more insight from discussion with each other researchers/doctors specializing in this field about the significance of this. ---------------------------------------------- For insight into the thought process behind the question it seems there are so many individual interacting factors, effects of epinephrine and norepinephrine, and complex interactions of the body that it is like trying to understand why a huge machine does not run right, and the thing that is necessary is to understand the primary malfunction or in some cases malfunctions if more than one thing is broken. Knowing if POTS is due to an autoimmune problem seems like an enormous step towards this. Some on this website have found the primary etiology, something other than autoimmune such as a mast cell disorder, carcinoid syndrome etc. etc.

Exercise has been a big help to me over the last few years, and kept me functioning. Cardio exercise. I do not faint so can run. I am not effected by exercise in terms of having relapses etc. as are many, thus it has been good. I run ~8 mi per week and would do more but am working again, and that combined with the daily struggle of functioning when sick are extremely limiting and require every ounce of effort I can muster to do as much as I can. My advice on exercise is if you can do it, do it, and do cardio. If it works great. My basis for starting it was a paper on military cadets with POTS made to run which showed dramatic improvements. Sue, I have wondered about your question about autoimmune and exercise. 1. How sure are they about this new theory? 2. The running might even be displacing autoantibodies at the time and helping short term. 3. Improving cardiac parameters like stroke volume, as would someone without POTS who runs might still help.4. It has a very clear and rapid effect in improving me, not sure how long it lasts-maybe just a day or two. Wish I knew the answers. Do not even know if we all have similar illnesses or different illnesses with a common effect. I am not doing well recently so not real positive.

They thought I had a Pheochromocytoma a few years ago. I even had an MIBG scan and CT. The doctor should be able to decide based on plasma metanephrines and normetanephrines. (If there si any question after he/she looks at your labs.) I am not as familiar with the urine test above in terms of normal ranges, but know it can also be an indication. Pheo is very very rare. The lab values should be at least 3-4 times above normal, and I would repeat them before going to expensive and fancy scans etc. The scans are NOT better at predicting the pheo than the labs which is important because one tends to feel they want the scan to be sure. With me the lab Epinephrine and Norepinephrine came out sky high lying and standing like 10 times normal, so we thought it was pheo. Then to complicate it the MIBG showed pheo and the CT did not. In the end I did a plasma metanephrine and normetanephrine that were negative. I probably should repeat it since it has been over a year just to make absolutely sure. It would be nice to have a pheo, an operation and be well but I do not think that is to be my luck.

Of note I have not been able to run much- I only ran once in 19 days and that was 9 days ago. It has a dramatic effect on me. My resting H.R. lying down is back around 100 and my standing HR is 130. I feel like my heart is racing, I feel like a mountain lion in the room. My restless leg syndrome at night is worse and I have trouble sleeping. It is a very clear effect if I do not keep up the running I get worse. Hope to run today and feel better soon. Because I feel so crumby I do not feel like running but know this is what I need. I had the flu and then some other important things came up and I could not run. I am on a forced exercise program. (i.e. I am sick without it.)

I am doing better. this means I am able to work, and to do many things I was not able to do in the past. My Heart rates go high standing but not as high, and I have fewer and decreased symptoms. This is not a full recovery, and it may always get worse again, but I will take it. I would encourage others to try various treatments including increased fluids and salt, medications, and especially exercise. All of these have helped and continue to help me.

http://forums.dinet.org/index.php?/topic/22268-mitochondrial-disease-testing-at-mayo-clinic/?hl=%2Bmitochondrial+%2Bmayo

I am working. I was off for a long time. Interestingly, it is not breaks that help me, it is the opposite. Sitting is hard on me, exercise and getting my blood flowing helps, so when I can I get up, and walk quickly, prefer to carry things places myself. The hardest part is when it is necessary to stand in one place. Sitting is easier than standing, and walking is easier than sitting. Plus walking has the added benefit of improving how I feel for a short time afterwards. Overall my running outside of work has been the reason I am able to work again. I do still take Propranolol LA 7.5mg BID which I make myself every week by splitting 60mg capsules to make them smaller into gel capsules I buy. The reason I do this is the regular propranolol wears off quickly so it would not last all night for me, the Propranolol LA lasts longer but does not come in small sizes. Hope this helps. Happy Thanksgiving,

Continue to do well with running. It keeps the symptoms down, and I am able to work. Running has been the magic pill I was looking for. Though it is not curative, it is tremendously helpful for symptom control. I spoke with one of the United States top expert doctors on POTS ( I did not note I would be posting their comments so I will not put their name down, but most of the people on the site would know the name of the doctor.) This doctor assured me that they have not seen an average or mean increase in Maximum HR in POTS patients above their calculated maximum HR. I find this hard to believe based on my own HR that lands 4 standard deviations above my calculated Maximum HR at times, but this seemed like important information to pass on here. They also noted they would not be concerned about my high HR, unless their was an arrhythmia, but despite this I recommend anyone check with their own doctor. Happy Thanksgiving,

Still not back, no idea what it was or why but gone for now.

This appears to be a complex and controversial thread with many people very interested in it. My post is just a note on the 23andme test which was today banned by the FDA. This is from USA today, today, and I thought it was worth posting here for interest. http://www.usatoday.com/story/news/nation/2013/11/25/23andme/3699329/ This is not intended to be a comment on or criticism of any one else's opinion here, though it seems good that people have the forum to discuss controversial opinions, in the search for treatment and that is one of the things I appreciate about Dinet. Happy Thanksgiving,

http://www.usatoday.com/story/news/nation/2013/11/25/23andme/3699329/ FDA bans 23andme test. USA today.

This strange and worry some symptom that went on for some time in a fluctuating pattern went away at the beginning of September and never came back.

There is a clear cut connection between my sugars and my POTS. I do not know what that connection is. When my sugar is low it increases the "adrenaline feeling" or "mountain lion in the room" feeling. I developed DM at about the same time as POTS 4 years ago. I have not been able to find a form of LADA or MODY that matches but am skinny, so it may not be normal Type 2. I also have been diagnosed by biopsy with an Electron Transport Chain Complex 3 disorder (Mitochondrial) so it may be a mitochondrial DM. It is tricky though because lack of sugar, or energy, to the cell also revs up the body's fight or flight system immediately. Is the low energy to the cell causing the increase adrenaline and resulting feeling or is the increase adrenaline causing decreased insulin via alpha receptors to the pancreas, causing decrease in insulin and less energy to the cell. I suspect the former. Remember that it is not the sugar in the blood that causes your body's reaction, it is sugar in the cell, and in DM they are not matching. (i.e sugar in blood can go high because it is unable to enter the cell) (Also, I would note that it is the sugar in the cell that causes the damage to your Pancreas, Eyes, Heart, Vasculature, Nervous System and Kidney.) Thus the body still thinks it needs more energy. I apologize as this was not really carefully written, and not incredibly clear, and is also complex, but there are those on this site that I believe will follow the general idea. I utilize a low carb diet and run to help both the POTS and the DM. I have not been around in a while due to work. Things improved with the running, and have remained fairly unchanged since (better but not well.) best wishes to all,

I did not read all of the posts here so my apologies if I am repeating something. Anxiety as a defined medical condition must meet certain criteria. For example General Anxiety Disorder. I do not meet these criteria and do not have an anxiety disorder. I tend to worry less than most people. There was a study at Vanderbilt showing less anxiety overall in people with POTS than the normal population. This said I do experience a feeling of my heart racing and an adrenaline like feeling multiple times a day. So does a person with a Pheochromocytoma and they do not have an anxiety disorder either.

I was looking back at this post because my HR today went to maximum in 1 block, 10 points over max in 2 blocks (.2 miles on Garmin) and stayed that high the remaining 2 miles. I went to the high 190's but did not go over 200 as I used to in the past. This is while still on 3.75mg of Propranolol BID, which should slow the HR especially at peaks. Regarding the Cardiologist Electrophysiologist who specializes in POTS also, he did say it was OK to have my HR go this high when I exercise and did encourage me to do this. Again I would note that POTS has different causes and people need to check with their own doctor on this. I am not recommending people exercise at higher than their normal HR, but that they ask their doctor. The whole thing is very bizarre and scary in my book. Most primary care doctors do not know anything about this illness.

I have been through the scans and recommend you avoid them, and do labs until you confirm the diagnosis. My Epi/NE were sky high (one over 10,000), so I had an MIBG and Ct chest and CT Abdomen. The Pheochromocytoma specialist said he was 99 percent plus sure I had a Pheo. The MIBG preliminary scan was read positive. The MIBG follow up scan was also positive. The CT was read negative. The Pheo doc said I do not have a pheo on the phone, but when I went to see him he said there was still a 50 percent chance I did. (Seriously, you can't make this stuff up.) He suggested an pelvic scan and a brain scan for pheo. I said why not just repeat the labs. We did a Plasma Metanephrine and Normetanephrine and Epi/NE. Along with DA etc. They were only slightly elevated. This is not consistent with the 10,000 so he felt it is a lab error. I went to another specialist in Pheos but he was not interested after he heard what the first guy, his friend said. He did look at the scans at my request and said there was nothing there despite the Radiologist reading the MIBG positive. My primary sent the scans to another University radiologist who said the MIBG is positive and correlates exactly in location with a slight buldge on the CT and he feels this is significant. That was over a year ago. I will repeat the labs again soon and still wonder if there is something there in my Left Adrenal Gland where the MBG was positive. My point is: The Sensitivity and Specificity ( Ability of the test to spot what it is supposed to and rule out what it is not.) is much better for Pheochromocytoma with the labs than with the scans, and the tests are much cheaper. So don't make yourself crazy with the scans till you confirm it with the labs. I wish my doctors new this to begin with but I did a lot of reading. I would not recommend the Pheo specialist I saw for obvious reasons. ( I am not mentioning who here.)

PackersFan- I am not sure. I am wondering if it is typical for POTS patients to have maximum HR above calculated by large amounts. This in itself would be my big question. What is this about. That said, some ideas on how the exercise helps are: 1. It resets the receptor or some other mechanism so the Epi/NE have less effect, because the body recognizes the HR should not be hitting 200 2. The exercise sends a signal to the cell to take up more sugar, similar to insulin but through a different mechanism. There clearly is a mechanism. The cell having more energy stops telling the body to make Epi/NE- i.e. shuts off the emergency override that is keeping my Epi/NE on a continual high level. 3. It burns up Epi/Ne thus there is less afterwards for a few days. The improvement is very clear, and I do not think it is permanent. Immediately after exercise is highly variable, the next day I am almost always better, the next few days I am better but less so as time goes on till I run again.

Corina, Thank you. I was informed by PM. That is why I came to the thread to explain it since it is no longer attached to the thread. The purpose of the "advertisement" was the links to articles that I was referencing as noted above. I had no interest commercial or otherwise in the "advertisement" itself, but I understand that is the policy on the site and that is why it was removed. I was just returning to add some context to the post.

This has not been preset for the last week. I am hoping it stays this way-gone.

Did this work in the end?

Another month gone by and this earlier statement still applies. "This comes and goes but has not gotten better, and is still in the same spot and I still do not know what it is."

I guess my post was removed here as the link was an advertisement that cited some studies. The main point of it was that they pointed out that Aspartame added to Magnesium could cause problems that the Magnesium helps with including causing the depression that Issie mentioned. Thank you.