I Really Believe Exercise Is The Most Effective Treatment Currently.

[sue1234]

There are things that can "target" and cause weak proximal muscles. I can think of two---Cushing's disease and hyperparathyroidism. Not at all saying anyone has either of these, just mentioning it because we could have some metabolic problem that causes proximal muscle weakness. I know when I was doing my recumbent bike for about 6 weeks, I mentioned that my breathing got easier, but my thighs burn out fast, feeling like I ran miles when all I did was bike 3/10 of a mile! That never really got better over the 6 weeks.

[arizona girl]

Thanks futurehope for the heads up. I have trouble with my knees when stepping down. Where I have trouble probably due to car accident injuries is my right hip and si joint going into spasm and the bone where my neck meets my shoulders the big one sliding out and causing my whole neck an shoulder into spasm.

Yes, sue I agree that there may be something else causing those specific muscles to be weak, since the others in spite of no exercise are still pretty strong. I do have hashimoto, hypo thyroid, but my endo said that it was hyperthyroid that causes that type of weakness. With sfn though I also wonder if this may be some large fiber damage. I've never had emg on those muscle groups.

I do to have cushing like symptoms as a result of PCOS/metabolic syndrome caused by high insulin. My cortisol is normal and cushings was supposedly ruled out, though I did have a stim test that pointed to addison's the follow-up tests were normal.

I don't know that the parathyroid has been tested for or ruled out yet, I will have to talk with my endo about that. I guess I'll have to wait and see how I respond and if the weakness improves to figure out if it is decondtioning or something else. I'll post the stuff that helps down the road.

[RichGotsPots]

Arizona- I have a similar thing where my chest muscles get extremely weak after exercise or an adrenal storm. Maybe it's due to lack of blood flow in my chest or maybe my heart rate or maybe its a Mito issues, wish I could get some answers..

[sarahm]

Hi. I am curious about Dr. Levine's exercise program. I have heard a lot of people mention it, but it does not seem like the details of the program are readily available. How do you go about getting a copy of the actual program?

I am a big fan of exercise and it has helped me a lot. But I am kind of making it up as I go along. I am in a cardiac rehab program right now, but I am their first POTS patient so they are in the same boat. I just thought a little guidance might be nice.

[MightyMouse]

I would like to just say that it's like the most effective treatment for YOU. There are so many different etiologies (reasons your body works differently) of the groups of disorders we have here that there is no one clearcut "best" or "most effective" way to treat. Treatment effects are tied directly to exactly WHY your autonomic systems are misbehaving. I have a collage defect, so my organs jostle around a lot with high impact activities like running. I do well with light to moderate exercise like yoga, weight training, pilates, etc., but running 5K could quite literally kill me--the last time I tried I partially collapsed a lung and spent 2 days in the hospital. Just saying. For some of us, vigorous exercise is contraindicated.

[arizona girl]

Rich I don't have weakness in my chest muscles. I'm sure my abdominal muscles are weak and pool as well. If im standing still or on my feet to long even if walking my body aches from the waist down. I do though get delayed post exercise fatigue, that is worse then the fatigue I always have.

I will actually be getting pool therapy exercise this time. The PT felt it would be more effective for me then land exercise with gravity and there is less impact. When I know what the exercises are I will let you know. The hospital where I'm being referred hasn't contacted me yet. But the PT thinks highly of their pool therapy program. My only concern is picking up bugs because I'm prone to infection.

I don't know what to think about Levine's program. I know I don't have a small heart, which is his criteria for inclusion I think. I know I don't do well with standing upright exercise.

So I'm hopefully, I also hope I loose some weight. Between meds, pcos and hashimoto I'm up to 150, but I was a tiny girl so that is easily 25 pounds to much for me. I long for the day I can go shopping in my closet, I have so many like new clothes I can't get into.

I'll keep you all posted!

[McBlonde]

Is there any kind of exercise that helps with the blood pooling in the abdomen?

[arizona girl]

I don't know but I'm going to ask them that when I go there. I let you know what they say.

[kayjay]

I have had pots for at least 13 years. I don't want people to be discouraged if exercise does not help them. Exercise is good for my body and mind but not good for my POTS. I have found that swimming and pilates are what I best tolerate. At this point I have resigned myself that this is a lifelong condition for me. I avoid cardio as much as possible and until last year was working with a trainer for strength training. Now I mostly just swim.

Exercise ( really of any kind except perhaps yoga ) makes me feel better and worse at the same time. I will not ever give it up willingly but i go out of my way to avoid cardio ( unless I decide to shower or brush my teeth lol). For anyone who can exercise I think it is good for you but no matter how fit I am... I still have all of my pots symptoms and sometimes exercise is a real trigger for me. ( still gonna do it though ). I think strong leg and abs are helpful, but I get enough cardio going to the market.

[arizona girl]

Amen, KayJay, I was very athletic in college when it first became very obvious there was a problem and I was collapsing during aeorbic class.

You made me laugh about the cardio work out taking a shower, brushing teeth or hair for that matter. Try washing a window or a mirror or stirring a thick pot of something, even just digging a small hole for a plant in my yard and I'm in full cardio. In arizona sometimes it happens just walking to your car in the heat.

I guess I know it's not going to go away. I'm just want to do enough that I don't end up in a wheel chair. Which has concerned some of my doctors.

[RichGotsPots]

I heard octeotride is good for stomach pooling. Have you tried an abdominal binder. I'm not convinced I have stomach pooling because I tried a stomach binder and it caused pressure in my chest. All I know is after I eat my breathing is worse especially with carbs or anything heavy...

I wish I could exercise! I used to be very athletic before 16, I'm only in shape because of then. I have really believe I have the fastest metabolism in the world. I can go to sleep and lose 5-8% of my weight. POTS had definitely increased that. I think my weakness has something to do with my metabolic issues, possibly along the lines of CFS issues like lactic acid, mito, etc...

The pool in one thing I usually can tolerate well but not sure these days...

[kayjay]

Arizona girl, Isn't it weird to look back on your life when you think of yourself as athletic? I played field hockey, la cross, and tennis. I hated when we ran stairs ( I MEAN HATED). I quit playing basketball in high school. I told my mother that I couldn't run inside in the gym. Now I look back and realize it was the drills of running and bending over to tag the lines on the floor. Other sports I played really required running forward and upright. Before I was diagnosed I was trying to fix my shortness of breath by doing a "shred" dvd that included jumping jacks! I couldn't figure out how I could be "fit' and not be able to do jump jacks! DUH..

So for any former Jocks (he-he), if you are like me, you may do well to try to keep your muscles strong and get your cardio from "real life" activities. With my stubborn personality I have caused myself setbacks and sickness but pushing myself to hard. I cried when I gave away my tennis equipment and my roller blades but I feel pretty pleased with myself when I can take care of my family!

[sue1234]

Rich, I can relate on the abdominal binder. ANYTHING that presses onto my abdominal area, such as a tight waistband, waist-high compression hose, just anything, and I feel like everything was pushed into my chest. I cannot handle it at all. That is even why I slump-sit, tilted back.

[POTLUCK]

There seems to be a large mixture of opinions on exercise, probably due to the different causes for POTS.

I am continuing to run. 8 miles per week and trying to increase by 10% per week. I have not had a crash problem like some ran in to, at least so far. Fainting has never been a problem for me.

My POTS is improving tremendously. I have no idea if this is a cure or a treatment of the symptoms. ( meaning I would need to keep running to keep them away. ) I do still use high dose beta blocker ( Propranolol ER 60mg BID )

It seems to me that it is important that my heart rate is dropping at rest. My lying and standing heart rate, on 20% less of my beta blocker, is 10 beats/minute lower than when I started exercising.

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My plan is to continue tapering beta blocker while running so HR stays low. I plan to see if a compounding pharmacy will make a Propranol ER 40mg for me, as it is not commercially available below 60mg in the long acting form. I seem to need the long acting and need it BID not just daily or it wears off.

[Mytwogirlsrox]

Potluck-- how long have you been running? I just started 2 months ago ... I'm doing 2.5 miles 3x/week. My HR has improved, but I've started to trend down on my SSRI, but now my Hr is creeping back up. I'm hoping I can lower it some more with more vigorous exercise... I don't believe I have anything but plain ole pots, and so far exercise hasn't been a real issue i would love a 10 bpm decreas, like you! If you don't mind me asking, how fast are you running your 8 miles?

[Soap]

Been exercising for a year now. Started 5/6 x a week 1 hour long ballet/zumba or 20 minutes cross trainer (too tough!) but haven’t noticed any massive improvements. I could never have done any exercise if I wasn’t on beta-blockers as I’d be near-fainting within 10 minutes but now I can manage an hour of zumba. After 6 months I brought it down to 3x a week (when I can - busy life) but besides the blood pooling in my legs being much better when I exercise, not much else going on. I will keep going tho’, who knows, maybe long term....

[Birdlady]

I'm curious what exercise would do to those with NET deficiency? Perhaps that's why some of us do worse and others do better with exercise. Maybe Rama would know the answer to this one.

I had to give up on even the tiny amount of exericse I was doing. Just trying to stay out of the hospital during the summer is more than enough "work" for me.... Doing activity ontop of the heat would definitely push me over my limit.

[brethor9]

I hear you on that one Dana! Every time I try the littlest bit of exercise or exertion my system shuts me down immediately My Drs want me to do at least 10 mins a day so I figure if I can do a couple trips up and down the stairs I am doing good....I was diagnosed with high catecholamines baseline and standing.... I don't think exercise is the answer for everyone....I was incredibly fit before POTS- 6 pack abs and all! 1.5 miles a day now I can barely do my laundry....and pushing through isn't an option....this illness makes you pay if you play ;(

Bren

[ramakentesh]

For me at least exercise does help. I dont think it has as massive an effect on my symptoms as licorice etc but it does help. But ive never been overly badlty effected by it.

[POTLUCK]

Mytwogirlsrox -I am running 5-6mph ( 10-12 minute pace ) I was trying to increase my speed as I feel good about myself when I go faster but was failing as I get to sore, so now I am going slower 11-12 minute/mile and trying to increase 10%/week in distance not speed. Not only has the HR come down overall ( lying and standing ) but I have been reducing the high dose Propranolol ( from start of 80 twice a day to 60AM and 40 PM- thus I am on 62% of my dose just a few months ago. )

Propranolol LA does not come in smaller than 60 even in generic. If I do not take the long acting and take it twice a day my HR goes way up. The compounding pharmacy would not make the 40's for me, but offerred to give me empty gelcaps so I could split a Propranolol LA 80mg into two 40mgs. It was challenging but kind of fun.

Bren- I had my first POTS symptoms- " dizzy feeling and blanking on words" the night after a 10 mile mountain hike with a 3200 foot total gain. I have wondered if my Beta- receptors could be hypersensitive due to 20 years of Propranolol blocking them and the running while reducing Propranol might be helping to reset them correctly. It is all speculation. But at least it is helping now

[Soap]

Potluck, I am not understanding everything you say (must be fuzzy brain, LOL) but just wondering if you know of any reasons against being on a high dose of propanolol for a long time. I am on 80mg slow-release (is that what your ‘LA’ stands for??), and have been since 2007. It has helped me enormously as only the slow-release one covered the ups and downs I got when on lower doses. There is no lower dose in Slow-release (so I was told) so I feel fairly stuck with it: which is fine but I wonder if it is safe to be on propanolol for ever.....

This thread made me decide to start running as well. I find it much, much tougher than my usual zumba classes....also more boring...LOL. So far just 20 mins of walking/running.

Thanks all!

[POTLUCK]

Soap,

Sorry if I was not clear. The Propranolol slow release brand name is inderal Propranolol LA or long acting ( the generic is ER or extended release ) I am in the medical field and use abreviations like that alot without thinking about it.

I do not know of any reasons against being on it, in answer to your question.

I was on it for over 20 years for tremor, and am considering the posibility only, that it may have caused my beta receptors ( that it acts on as it is a B-blocker ) to be more sensitive - like the body trying to fight its effects, and now going off it may have caused my POTS, sort of like a dependence to it.

I HAVE to take it twice a day or my heart rate is too high, yet want to slowly, slowly taper my dose. You are correct in saying that it does not come in a dose lower than 60mg, so I made my own by splitting an 80mg long acting capsule. The litlle beads in side the capsule are the long acting part so it should still be long acting and roughly 40 mg when I put it in 2 capsules.

[SpinnyC]

I'm on the fence when it comes to exercise. My doctor put me into a cardiac rehab program about a year and a half ago, before I was even diagnosed with Pots. It took me eight months to work my way up to doing some seated exercise and 22 minutes of slow walking on the treadmill (I wouldn't even walk a total distance of a mile in that amount of time). But I felt awful doing it- presyncope, short of breath, chest pain, ect, especially on the treadmill. I couldn't walk for 22 min everyday but whenever I even came close I'd be toast for the rest of the day. Overall I'd say I saw a little bit of improvement in my energy and functioning level- but nothing dramatic.

Then I got a respiratory infection, it made the Pots much worse and I couldn't exercise for about a month. When I started back up again I was at lower level than where I'd started the first time. I could only manage a few minutes on the treadmill, and somedays they wouldn't let me go on it at all because my vitals were so bad. It took me four months to work back up to walking (slower than I was before) for only 8-12 minutes.

Then four months ago I was finally dx'd with Pots and put on medication. In just these past four months I've been able to increase my treadmill time to 28 minutes (still pretty slow, still haven't walked a full mile yet). I've also increased time and intensity during seated exercise. Some days I still feel pretty dreadful but it's not as bad as it was when I was exercising without meds.

Personally I think exercise was always good for my mind and it did help my body a little too. But without the meds no matter how much I tried, I just couldn't get past my symptoms to make any significant gains. I really believe no matter how hard I tried to exercise I would never be up to my current level if it weren't for the medication. I think if I went off it tomorrow I'd see a significant drop in my exercise ability. I'm not saying I'd be back to where I was four months ago, but I don't think I'd stay at my current level. So for me exercise alone wasn't an effective treatment, or even the most effective treatment. (It's hard to say something is working for you when after a year and a half you are still outpaced by 80 and 90 year olds.) But I know we are all different! And I'm really glad that exercise has significantly helped some people.

My personal goal is to actually (finally) walk a mile before my next doc appointment in two months. I'm up to 3/4 of a mile... soooo close I hope I can do it.

[Guest headhunter030]

Good stuff Jangle. I guess in summary its according to what your underlying problem is to determine what our cure/best treatment is. I know this thread is exhausted, but I will give my story relating to this.

When my symptoms started I was 22 years old. Noone knew what POTS was; it was 1996. But looking back even when I was in college and in great shape (two sport college athelete football and wrestling) I noticed that on nights that I drank alcohol my heart would fly, I would get sweaty and shake. I also knew that after lunch (huge meal in college) my heart would fly and pound and I would get lightheaded. I was told I was probably allergic to beer and hypoglycemic---anyway off topic.

Well my parents thought I was lazy and depressed (after 25 blood tests and a visit to the cardio) so they sent me to work at the family business. This is because all I wanted to do was lay in bed and complain I was dizzy. I was actually lightheaded; didnt know the differecen then. My symptoms were shaky, dizzy, lightheaded, little heat intolerance, and a general feeling like I had the flu day in and day out.

Well this business (lucky me) entailed loading and unloading trucks; mostly rolling 500 pound drums off of trucks with our bare hands. I started in October. Well I still felt not well, and after unloading a truck I felt worse. I also felt more shaky in the morning at first. Well by new years eve I was stronger then an ox, my legs were stronger by far then when I was a Defensive Back in college and my arms were twice a strong a when I was a pretty boy lifter. And the reason I posted this....my symptoms went away 100%. Now prior to working there,I exercised and tried lifting, and played deck hockey, and rode a mountain bike the whole time I felt sick with no avail. It was the forced day in day out on my feet carrying and struggling (which made me feel worse at the beginning) that seemed to have done it.

Well I played ice hockey and even went through 2 police academies and then my sympoms didnt come back until ---surprise I hurt my shoulder and stopped playing hockey and lifting 2 years later.

So still now knowing what I had I tried to recreate the exercise. I played softball, rode the **** of a mountain bike, pushups, exercise videos etc.....To this day nothing seemed to work. So my POTS (which was not dignosed until 06 when a doc took my pulse and it was 60 and after standing it was 110) has progressed so much that I can barely go outside on an 80 degree day---but I still work as a detective.

So in summary, I know that the exercise snapped my body out of pots once, but I think its progressed too much this time--and also important I was 22 then and youth is a key...now Im 37....

[Serbo]

^ nice post. i was similar to you, lifted for vanity 6 days a week from 16 to 24 and had a bit of dizziness and pain but no problems really. In good shape. Had a surgery, deconditioning etc and POTS kicked off for me. Through numerous flares pushed myself to try and exercise my way out of them, and sometimes just felt worse. Don't write off getting back in shape though if you can, it might not be enough alone to help you feel better but it's part of the picture.

i was doing well until i picked up a groin injury a couple of months ago, as i got in worse shape resting a lot stuff went down hill. Exercise is a big part of it, but stuff like hypoglycaemia is also related. The more deconditioned you are the worse your bodies insulin response will be. it's a complicated weave of factors that all interrelate, but if you can try stay in shape you'll be doing a lot for yourself. Seems gradual reconditioning is the way forward.