POTLUCK

Thank you Alex74Alex. It is hard to be positive sometimes, and easier other times. My standing HR was at 145 the other day, for no particular reason, just before bed time, and it was so distressing, I just felt terrible, "Why? Why me? What the heck is causing this? Why no answers? How will I sleep? etc." Other times, when doing well- standing HR after lying in the sun yesterday at bed time was 95, and I feel like there is nothing wrong with me. It can change your mood for the positive. andybonse - I personally notice that my HR can be all over the board immediately after exercise, and sometimes this lasts 12-24 hours, but overall it is usually drastically better for 1-3 days after a hard run. By a week without running my standing HR numbers are back up and I feel awful. My lying HR rises a little (say by 10) over this time also, but the standing rate climbs more, the lying to standing difference climbs more, and how I feel is much worse. The positive to this is I find rapid improvement, as noted above in a day or so in the numbers and how I feel. When I first started running it may have taken a few weeks for this effect to work well, and their were a few weeks where my numbers were sort of unpredictable most of the time. Now, as I noted to Alex above, I have an occasional day when my numbers do not seem well matched to things. Generally the numbers match how I feel and they are VERY CLEARLY AFFECTED by whether I have run recently. So much so that I am concerned that if I was to sustain an injury where I could not raise my HR via exercise I would be a mess. I have kept records of this for a year with a BP cuff, recording lying and standing HR, and can tell you there is a very clear correlation in HR a few days after exercise and a clear correlation where the months I have averaged less miles my HR is much higher that month than those months where I averaged more miles. Thus it is a sustained effect, if I keep up the running. ( As noted I remain on 3.75mg Propranalol BID ) The running is the single most effective treatment I have so far found and it is not curative, only controls the symptoms, which is why I joke that I am on a forced cardio program. I hope this helps. As a note for runners- I average 5-10 miles a week. Sometimes 3-4 runs in a week. Sometimes 1 long run and a small run. It all depends on time. My running times do not seem to be what they should be based on being a runner years ago, and accounting for my age. For example friends my age can do a few miles at an 8 min pace. I cannot. I cannot be certain if this is due to illness, and keep trying. Also my soreness is ridiculous and I cannot say why, I have been running a year. My running HR used to go over 200 at a fast pace but has recently not been going that high even at my fastest pace. It still goes far above my calculated maximum HR though, and can stay there for miles. I was diagnosed with DM at the time of my POTS DX ~3 years ago, and use a low carb diet. I can eat a Danish, or even that, and a donut for a long run, and it helps my energy dramatically and the sugars fall back to normal by the end of the run. They would not be anywhere near normal if I ate a Danish without a run. (They would be 300-400's,) as I learned from things like Sushi (the rice) a couple years ago.

To follow up. I have remained very functional, and continue running, but continue to have POTS and require 3.75mg BID Propranolol LA. If I was not working so hard, had more time to exercise and relax, maybe I would continue to improve. I thus feel I am treading water in the sense of making it though the work week day by day, trying to run, continuing the RX's, but not feeling well, and still having an off kilter feel, and a mountain lion in the room feel, and rapid HR on standing which meets POTS criteria even on this dose of RX. I can function like this, earn money, and people do not really know this is going on at work. In summary it could be worse but it could be better.

Mitochondrial Genes are those genes that effect your mitochondria. They can be inherited maternally in the Mitochondria itself or coded for by normal genes (nuclear) that code for things like amino acids used in the mitochondria. Thus asking if you have Mito is like asking if you have any Genetic illness. It is not that clear. If you rule one genetic illness out, or even rule out 100, you might have many more. A doctor in this specialty, can tell you which tests to take as indicators and if these are significant what course to pursue.

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.

Issie- I read somewhere that the 23 & me thing is $100. That seems cheap. Is that the total cost for all the necessary tests. Does it cover those 2 genes involved with the Methylfolate pathways that I have read about a lot of people having defects in. ( This is becoming bigger in the mainstream literature as a cause for several illnesses. Something to do with the ability of the body to convert folate to Methylfolate, and if you have the homozygous mutation they recommend high dose Methylfolate. ) What are BHMT pathways? Alex74Alex- This is A LOT of information to digest. I will have to look into it more. Thank you! Freaked- I developed DM at the same time as my POTs so suspect a relation in my case. MSG definitely makes me worse and I try to avoid it, but I never had a problem with it before my POTS. These things are hard to figure out, even with a medical background in my case. Issie- re: diet-Freaked, I believe is referring to the "diet thing" meaning whether the refined sugars and insulin are causing the excitotoxicity. I do not know if this is the case. It is the theory of the author. I suspect sugars and insulin have something to do with this in my case, because the effect of the running and eating carbs before I run may be lowering insulin resistance. ( But it may be resetting receptors to Epi, NE or something else-who knows-just seems to relate. ) Thank you for all the feedback everyone!

Looneymom- Thank you. I did not know Dr. Grubbs had POTS himself. I e-mailed them at the clinic once, and got a reply from Beverly the NP cardio I believe. I only did 3 miles last week and 3 miles this week and my numbers are high this morning (standing HR average 118) and Lying/Standing difference in averages 31. I am still POTS by the numbers and have a lot of the "adrenaline feeling" or "Mountain LIon in the room" feeling. I do not see any reason to believe I have to push harder in the sense of increasing my milage to maintain, I think I am just decreasing the milage as I am doing better because I am back to life/work etc. and other responsibilities take over. However I will run today because the feeling is no fun "Mountain lion" and the running will help. It is a forced exercise program I guess. Corina- Thank you! Volo- So far the more running the better. I think ( not certain ) I get a better result with faster runs, and definitely with more milage. I find I can do more milage physically in a week if I go slower. I read a trainer's guide which said run your fastest mile and then do your runs 2 1/2 minutes per mile slower for longer distance to improve your milage. I think the faster runs and longer runs help more but the slower runs help me build up the ability to run more miles. My rate limiting factor is just time (Personally in my life to do the running.) I have been working etc. and not enough time. I will just have to find ways to fit it in. I was doing pretty well with an average of 8 miles per week for a long time. ( I cannot say I stick to it, but if I was recommending what I would do for myself it would be running at least every other day say 3 miles per day and even more, the more the better. Also I would say increase milage slowly, no more than 10% per week even for a healthy person, so definitely less than this for someone with POTS. Hope this helps. ) Overall- I am by no means cured, but I think controlled, as long as I keep the milage up.

Just a personal update. Posted here in this section as people doing well were an encouragement to me when I was doing terrible. I found that cardio exercise and tapering down my Propranolol is what helped me. I was running regularly and see an improvement in my symptoms and my HR numbers ( Standing HR and the difference in lying HR and standing HR ) that is very clear and convincing, and matches my symptoms quantitatively and qualitatively. I can think more clearly ( not normal yet but you will see far fewer mistakes in my posts ), have a decreased intensity to my "dizziness" of "off Kilter" feeling as I call it. ( I still have this feeling off and on daily though. ) I rarely experience the "Raynauld's" phenomenon where my toes and fingers would turn blue for short periods. I am able to work and have been working a lot of hours again. This has actually been the problem as I become normal again I do not have the time to exercise ( work pressures, hoe pressures etc. ) and as soon as I decrease the running my symptoms worsen. I am on a forced cardio program. LOL I have done very poorly during the couple periods of 1-3 weeks that I did not run. Just recently I am only averaging about 5 miles per week and my symptoms are creeping back. Need to run more. The medications I am on are: Mito supplements as ordered- not covered by insurance ( Carnitine, CoQ10, B1, B2, Vit C.) Multivitamin, Propranolol LA in gel capsules I make myself by splitting a 60mg tab again and again until I get 3.75mg capsules that I take BID (twice daily) for additional HR control- cannot go without or symptoms and HR increase, but I used to take as much as 80mg BID. Also take Pramipexole for continued symptoms of Restless Leg Syndrome, and I am on a Low Carb Diet for the Diabetes that come on with the onset of the POTS (onset but not diagnosed yet in Fall 2009.) I take very low dose diabetes medications (Glimipiride 1/2mg, and Metformin 500mg both BID) My sugars are extremely well controlled on the low carb diet, but will go into the 300's or higher easily if I was to eat a high carb food. ( Thank you to Jenny Ruhl's website and book Blood Sugar 101 ) I was diagnosed with a Pheochromocytoma, saw lots of specialists, had NE, Epi sky high (like 10,000 - likely lab error though lab repeated and said was not ) & repeat NE, Epi, with Metanephrines double normal but not sky high, had MIBG positive, and CT read negative, but also read by another radiologist as having a small lump on the adrenal correlating with the MIBG, and differing opinions from Pheo "experts." I need to follow up with some more labs, because if there is a Pheo these numbers would rise. I suspect there is not a Pheo, but should follow up. Never have time. I was also diagnosed with this Mitochondrial illness ( Electron Transport Chain Complex 3 Dysfunction, by skin biopsy, ) and told this was a progressive declining illness by the specialist, who said "see you back in a year thanks," and I take Mito supplements, but I have seen no indication that they make any difference. I am also not convinced I have a progressive declining illness. I have been through the wringer and am drying out. I thank everyone on Dinet. It is a wonderful site for people to learn about their illness, and talk to people who can understand just how tough things are for them, and on a regular basis. Everyone was so helpful and supportive to me when going through this, and just the supportive comments on tough days are SO VERY HELPFUL. thank you,

I found some more links. An extension of hypotheses regarding rapid-acting, treatment-refractory, and conventional antidepressant activity of dextromethorphan and dextrorphan. http://www.ncbi.nlm.nih.gov/pubmed/22401777 They are saying it may have a similar rapid acting action to Ketamine for depression. Ketamine has been quoted to be one of the Top 10 developments in psychiatry for the coming decade by at least one source. ( Ketamine is by the way an old horse tranquilizer with hallucinogenic effects which was abused by some in the past- do not know if it still is. ) I tossed in a link on Ketamine and depression here... http://www.ncbi.nlm.nih.gov/pubmed/23214398 Dextromethoraphan and Fibromyalgia pain. http://www.sciencedaily.com/releases/2005/05/050519141247.htm Dextromethoraphan and Pseudobulbar affect http://www.sciencedaily.com/releases/2010/04/100413151909.htm Could not find a lot on Dextromethoraphan and POTS. There is a lot on NMDA/Excitotoxicity. Found this link from Rama HERE ON DINET while searching, but the post does not go through anymore, maybe Rama still has the article. http://forums.dinet.org/index.php?/topic/15292-nmda-antagonists-in-cfs-and-fibro/

I put moderate to heavy. I can do a lot but the limitation is the rising heart rate. It goes over 200 and so there is a limitation.

The beet root juice had a very clear effect on me, with a very uncomfortable rebound. You might find this stronger with a more clear answer to if it is doing something for those not seeing an effect. It is available bottled.

I found this article... http://www.webmd.com/fibromyalgia/news/20050523/cough-drug-may-help-fibromyalgia-pain Also read it can cause histamine release and I know there are people on this site with mast cell issues etc. who would not want to try this.

http://bpainfreetherapy.hubpages.com/hub/POTS-and-Excitotoxicity My computer does not seem to be working well tonight. Anyway, a friend sent me this link they came across. Not sure what to make of it. Thought it was interesting..... To paste the first few lines.... Excitotoxicity in the pathogenesis of POTS, Fibromyalgia, Chronic Fatigue Syndrome, and other disorders. Excitotoxicity is a cause of nerve damage that occurs when neurons become overly excited, begin to malfunction, and sometimes commit cellular suicide.

Wonderful news. I have been doing well with my POTS, but only when I keep running, as soon as I stop, the standing HR numbers rise drastically. I do believe cabbage is one of the foods like Beet root juice that are high in nitrates and thus effects nitric oxide which dilates the blood vessels. In the past I found countless articles on this, but with the beet root juice I got a sharp rebound effect the same day. I also can't really do juices well with Diabetes. There is information on nitric oxide and POTS, CFS, Temporal Lobe Epilepsy, reductions due to Diabetes, relation to Melatonin, and antioxidants, and relation to BH4, which ties in with methylfolate and a lot of the new research on the genetics of this, and its affect on many illnesses. There are animal studies on NO and seasonal effects etc. I probably have a 100 article links. It is very complex and there are 3 types of enzymes affecting it in the body, and I do not remember most of it. People are doing a lot of research on it though, so if any one can put it together great. I also have this patent in my links for its effect on... http://www.freepatentsonline.com/EP1336602.html Nitrate prodrugs able to release nitric oxide in a controlled and selective way and their use for prevention and treatment of inflammatory, ischemic and proliferative diseases http://www.sciencedirect.com/science/article/pii/S0023643811003501 White cabbage fermentation improves ascorbigen content, antioxidant and nitric oxide production inhibitory activity in LPS-induced macrophages http://www.leaflady.org/nitric.htm Discusses NO and sources including cabbage. Anyhow, glad it is working, via whatever mechanism, just thought some of this might stimulate someone's research on here, to help figure this out- Potluck

I say placebo or not if it works take it.

What I wonder is if I should be worried about it. ( I guess in saying that I realize I am worried about it, just losing my faith in medicine/physicians to do anything to help it - almost do not see the point to going and listening to them say they have no idea, and put some psychiatric connotation to it. )

I know coconut oil is recommended for Alzheimers now.

This post seems to have clearly answered my original question, that it is very common for POTS patients HR to go above maximum calculated. This is interesting to me in that it shows in another way why POTS is not due to anxiety etc. as so many doctors dismiss it. A normal person would not be physically or mentally able to make their HR go that high period. ( That is why it is a maximum HR ) Racer my HR goes 30 points over max and my Cardio is an electrophysiologist who has many POTS patients and he encouraged it. My HR does not go as high as some on here. I would suggest people use caution and check with their doctor. I think my doctor just feels th exercise is improving the condition and that is good.

Passing out itself sounds dangerous. I heard a lecture recently saying that people with HR over 120 baseline have a higher incidence of Cardiomyopathy. That being said my POTS doctor is a Cardiologist, specializing in Electrophysiology and he says it is OK to run with HR 30 points over calculated max. He was very happy it was working for me and encouraged me to continue, knowing the HR.

It does sound like a neuropathy. It just started and came on abruptly which is strange, but it is not going away so I will probably have to see someone= I would think a neurologist. How do they test or look into in to it. How were you both diagnosed?

Kay107 - Your heart rate goes hovers around 250 beats per minute ?

I do not really get to many odd symptoms. I had a lot of them that clearly went with the changes in HR posturally when my HR and symptoms were worse ( i.e. before running ) I still get some palpitations, a little to much racing feeling, which is also a measurably fast HR at times, some dizziness with standing etc. but manageable. Anyways, this new thing started last Saturday. It is intermittent, but always occurs in the same location, the front outside portion of my leg below the knee, and it is a cold feeling. The first day I thought I spilled something wet on my jeans, actually took them off and dried them 40 minutes. I notice it more when something, like the jeans is touching my skin. It is irritating, and almost like pain, as if the leg was to close to the fire at a campsite or had frost burn or something. No idea what to make of it.

I should have clarified my "5" The most effective treatment range for this use is a daily dose of 4.8 to 9.6 grams divided into three daily doses at 8 hours apart. and this was for vascular disorders, such as Raynauds

Interesting, I was looking at this a while back. It can help with Temporal Lobe Epilepsy, is used for Raynaulds which I was getting with my POTS, and can help the Electron Transport Chain - and I have a biopsy diagnosed defect there ( ETC Complex 3 ) I never took it though. Too many other things to try on the list first. Good luck. Wikipedia does say doses higher than 5, and does say divided 3 times daily.

My HR went 31 points above my calculated max today running. I ran my longest run in years ( 9 miles at a pace of 11 minutes and 15 seconds a mile - not fast but long ) My HR ( on Garmin ) went above my calculated maximum after the first mile and stayed that high for the following 8 miles. The running appears to do something to the difference between Lying and Standing HR. After one of these runs where my HR goes so high the next day or two the difference between my Lying and Standing HR decreases. ( i.e. my POTS not only feels better, it measurably improves. ) This has been how I have been tapering the Propranolol. I went from 3.75 LA BID to 2.5 BID starting last night and slept terrible, waking feeling like pulse pounding, numbers were worse this morning Lying to Standing and I felt worse, BUT feel better after run and will bet numbers are better in the morning. ( I always due my poor mans tilt in the morning )

Very brief - like a set of curls will shoot up my pulse and leave my head spinning. Cardio: Better while doing it, and better after, usually better the following day, and better overall if I am doing it several times per week. Rapidly deteriorate in a few days, when I stop. It is like a forced exercise program in that if I keep it up I will feel better. Sometimes, though I just don't have it in me to do it. Like today. I drank heavy last night, something I have not done in a long while, and it had a very negative effect on how I feel and on my measured HR. Running would probaly fix that pretty well, but I just feel to crumby to make myself do it. Having lots of water and salt instead - it will not help as much as the run would, but maybe tommorrow. I also notice when I walk somewhere I feel a little better ( normally, ) though not as effective as running.