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POTLUCK
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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,

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I'm happy to hear you are doing well, Potluck. Thanks for posting an update.

How much do you think you need to run each week to keep feeling as good as you can? And how many days per week?

I'm curious because I think cardio and weights helps me a lot. I'm also slowly increasing my work hours and concerned about cutting back too much on my exercise. I do 45-60 minutes, 6 days per week, of either weights or cardio, plus walk briskly for another 45 minutes every day. I won't be able to maintain that when my work hours increase and I'm wondering how I will feel.

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Glad to hear you are making progress. Your exercise program sounds similar to what Dr. Grubbs had to do to be able to function. In some of his early articles he mentioned he was running 5 miles a day. That takes time. I ran cross country and I remember those 6:00 am morning runs. Surely you will be able to find a happy medium instead of having to push harder to maintain the level of functioning you desire. Or is this just part of trying to get over POTS. Not sure I want to know the answer to that question. Follow up on some of those labs so you don't worry yourself too much. You don't need any extra stress. Take care of yourself and keep posting your progress.

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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.

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That's so awesome. I'm really happy for you POTLUCK. Thank you so much for sharing your improvement with us and being an encouragement.

Janet

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Thought might enjoy reading this about Dr. Grubbs. Here is the article. Unless I misunderstood, I thought he had been diagnosed with POTS.

http://www.hospitalsoup.com/hc/postural-orthostatic-tachycardia-syndrome-things-that-helped-me-with-pots-recovery/

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I think I did misunderstand. Sorry about that. Dr. Grubbs has written some other articles on this site. I read quite a few of his articles because I can understand them.

I so glad that you are making progress and feeling much better.

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Really glad to hear you are still doing so much better. That's excellent news!! :) Thanks for the update.

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  • 1 month later...

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.

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Great news POTLUCK. Thanks for keeping us updated. It sure is nice to read a positive uplifting post like yours.

I hope you continue to improve.

Stay positive

Alex

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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.

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POTLUCK- really interested in your running comment. I think I'm noticing the same thing but mine is with weight lifting. If I keep my normal lifting schedule of 3-4 times a week I think I feel ALOT better. I don't do cardio for the sheer fact that I'm trying to gain weight and put on some muscle.

Thoughts on why it's working like that for you? Or anyone else have any insights on physical exertion and the benefits to dysautonomia?

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  • 4 weeks later...

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.

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  • 2 months later...

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,

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Always good to hear from you and know that you are still doing well. That's great news! Thanks for sharing your info from the POTS specialist you saw.

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  • 2 months later...

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.)

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Hope you can get back to feeling better soon. Flu. Yuck! No wonder you are feeling crumby.

Good luck getting back on your running program. Hope you are able to achieve those same positive results you had before. :)

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  • 3 months later...

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!

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I like reading your updates. Always good to hear from you and know how you're doing.

Seems that your mito stuff isn't holding you back much.??

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Thank you Issie and Chaos.

The Mito diagnosis: Electron Transport Chain Complex 3 disorder by biopsy, has been of very little value to me. It really has not helped explain my symptoms, helped with treatment- I am unsure if the supplements do anything (Carnitine, CoQ10, B1, B2, C) These seem to be recommended for most mito disorders. There seems to be almost no literature on this disorder and the doctor who gave it to me is not really able to tell me what it will cause or how soon. Thus, I am unsure that I even fully believe the diagnosis anymore. It has been a couple years since I got it and I do not see things like stomach symptoms that one might notice with increased cell turnover, nor have I seen further cognitive decline as with neurons which are sensitive to mitochondrial disorders.

(That is more than you probably wanted to know but the diagnosis has been a frustration, rather than the answer to my POTS that I had thought it would be.)

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I used to believe in lots of supplements, but don't as much as I once did. I think we have issues breaking down proteins properly and wonder about concentrated parts of proteins. Concentrated anything becomes more of a medicine. Since my diet change, and trying to get my nutrition that way, things have greatly improved for me. I still use some supplements, but not all of them daily.

Issie

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