Exercise Advice

[SleepHunter]

Hi All,

I ran 6 miles tonight and now my body is in twilight. I can feel it on the edge of an adrenal "leak" but at the same time, tempted to drop into dead sleep from exhaustion. I have been running all my life, was an athlete, a US Army Infantry soldier and have had my experiences pushing my body to the max. Now that this condition has reared its ugly head, I am wondering how it is that I will transition my exercise to deal with it. I really just want to ignore it but I suppose I need to start opening my eyes to the reality that at any moment I could trigger it and be awake for the next 5 days.

Have any of you experienced exercise..... triggering an episode? If so, how did you adjust? What cues did you pick up from your body? Were you able to continue a challenging exercise program? Thanks for your help in advance.

My situation: tachy, adrenaline rushes, nausea, fog head, dizziness, sweats, cold feet and hands, regular sinus infections sleep apnea, borderline asthma and IBS.

[puppylove]

I had been walking slowly for short distances for a while because that's all I could handle. One day a few months ago I was feeling unusually great so I decided to go for the two mile trail I used to walk before POTS got really bad. Big mistake. I felt awful by the end and was a wreck for next couple days. I think the way to do it is slowly and build up whatever kind of exercise you are doing. If not, it might just be too much of a shock and really increase you're heart rate. Maybe for running you could could increase you're speed/ distance a little more each day.

[Chaos]

SleepHunter- Welcome to the forum. Glad you found us but sorry you have a need to be here.

In answer to your question, yes I've had a lot of experience with exercise triggering episodes. Prior to becoming really sick with this 2 and a half years ago, I always thought exercise was the cure for everything. It's been a rude awakening to see how often I set myself back by trying to push thru and force my body to do what it can't do anymore. I would try to do something and then be back in bed for a week, so I'd figure I needed to cut back from what I'd done that time. The next time I'd exercise I'd cut back more but still ended up in bed for 5-7 days. Frustrating to say the least. Cycle kept continuing until I finally decided that I needed to stop exercising and use my energy to do my regular daily activities.

After 18 months I did a cardiac rehab program with close supervision but still triggered several episodes even with supervised, slowly graduated exercise increases.

Personally I find that I usually feel pretty good when I'm actually exercising but if I do too much I will have repercussions within a few hours to a day or two later. I've been trying extra hard recently to listen to my body and not let my ego get in the way. I have noticed, if I'm totally honest with myself, that my body does give me subtle signs (sometimes) that I've done enough. Usually it's my brain and my ego that say..."oh you should keep going and just make it to "that" spot, or "that" time frame". I tend to be pretty stubborn so I have a lot of arguements with myself. (At least most of it isn't done out loud. LOL)

Signs that I should slow down or stop...subtle migraine type pain, pain between my shoulder blades, increasing tremor or shaking, HR going too high too quickly, or my HR increasing then suddenly dropping quite low, then popping up again, then dropping low etc.

Still haven't figured out a real rhyme or reason to why I can exercise well one day and be unable to walk thru my house the next, then go back to what I did the last time I exercised and be fine the following day. It's kind of like how I can have a high HR and low BP some days and feel pretty good or have normal HR and BP and feel like I'd have to die to feel better.

Currently I've worked up to a 40 minute (very brisk) walk or a 15 min. bike ride with a 25 min walk. It's still way less than I used to do but it's pushing my limits these days.

I do think that exercising at night (in the evening) is more likely to keep you awake than if you can get it in earlier. Do you have the problem of being more symptomatic in the morning like so many of us do?

[ramakentesh]

Ive managed to run 5kms through some pretty nasty relapses of POTS but now days i wonder whether I was prolonging things rather than the opposite. In this current relapse I took 2 months off work and all I did was take licorice, take mestinon and exercise all day long mildly. Moving around all day basically and I can tell you I improved very quickly. Two days back at work in front of my computer and im already going backwards I think.

My point: the only way to get through the exercise negative responses is to continue exercising in my experience. But even when I was running 5kms a day I was still dizzy half the day at work. I just tolerated exercise better is all

[issie]

Rama,

Glad you're strong enough to be back to work. I know it was a hard 2 months for you. Keep the stress levels under control and maybe you won't go in the wrong direction. I'm pulling for you.

Issie

[ramakentesh]

Im not really well enough to be back I dont think. Just thought Id try it. Been hard... Weird side effect of mestinon - time goes slower!

[issie]

Well, here's hoping that things will be okay for you. Do you mean the mestinon makes your brain slower or time just seems to pass too slow?

[ramakentesh]

time just seems to pass slow - weird I know but yet im sure its true.

[issie]

Hit fast forward and see where it lands you. LOL No don't it might set you backwards. LOL

[SleepHunter]

Thanks for the replies everyone-

Chaos - I am so much more symptomatic in the morning; I feel like another person. After working out last night, I fell asleep ok, but woke up at my usual time, with sweat, at 3am. By 5am I was freezing. Typical. But overall I am rested which is a blessing. I also, as you, have pain between shoulder blades and HR up and down. Now I am nauseous and feeling some anxiety but I must say I don't feel too bad. I do appreciate the hints and I will be aware. I really hope I can go a month or two without an episode. I need to lose about 30lbs!!!

Rama- I am going to commit to try and exercise regularly and hopefully my condition wont worsen and I will work up a tolerance.

What about water? I am drinking 2 liters a day. Should I be drinking more? Lord I hope not. I spend enough time with the urinal as it is!

[jangle]

6 miles good gosh. Are you noticing symptom improvement at that distance? I think there's also a component of time involved. One member here by the name of TXPOTS ran for 8 miles 4 times a week for a few months and then recovered from pots. She did other exercises as well.

[MandyBrook]

Jangle-- Do you happen to know what her exercises were? After I have my complete cardio check out at the end of March and am deemed healthy enough to exercise I would like to begin exercising again. I snowboarders and wake boarded and did Zumba before all this mess started....

[klgpdx]

Hi SleepHunter!

Exercise is one of the most chaotic topics for POTS patients. Some of us go into depression just thinking about it, including me. But, as I have mentioned in some other forums, exercise has been a key component in my health since I was diagnosed. When it comes to cardio, I personally believe it is always about assessing limitations and not exceeding them. For example, 6 miles of running would literally kill me. My heart rate has always exceeded 200 bpm by 1/4 mile! But I do other cardio that I react less to, such as rowing.

Because of my fear of exercise I hired an extremely qualified trainer who monitors my heart rate with me. I work out for only 40 min, 3x a week. I do 5 min of warmup cardio, then strength training for 30 min with intermittent 1 min. cardio intervals, followed by 5 min of recovery cardio. For me, that is all I need. In three months I converted 9 lbs of fat into muscle, and my heart rate is stabilizing!

Good luck!

[kayjay]

Please consider less water and more things like v8 and nuun. or even gatoraide. mayo clinic tole me I drank too much plain water. You need electrolytes. Water will flush them out. My hubby has always called me a "big drinker" lol... soup and salted drinks have helped me.

[issie]

Sleephunter,

Most of us are just trying to be upright and right now my goal is to walk on an eliptical for 15 minutes. I've made it for two days now - but, trying to push past that hasn't been successful, so far. So, if you can do 6 miles - that's amazing. Consider yourself above the norm. I hope you're able to keep up your intensity and not get so far down like some of the rest of us have and have to start over. It's like trying to learn how to walk - one step forward and three little shuffles to keep from falling. LOL

Issie

[SleepHunter]

Checked my BP and HR today 167/76 and 67HR!!! Best it has been in months! I wonder if the running is starting to make a difference? No adrenaline leakage today. Completely stable. Wow. I hope it lasts....

I hear ya on the water. I have started drinking gatorade AND coconut water, which is very good for you. Check it out.

[jangle]

TXPOTS's additional exercise was stairmaster, elliptical, and weights.

[SleepHunter]

I feel for those of you cannot get out bed, i really do. My form of this does not appear to be as physically debilitatting as some others but I will tell you that the form I have is mentally exhausting. I don't know if you have gone (literally) 5 nights with (litterally) no sleep. It is the most I have ever gone in one episode but it was a life changing event. I lost 12 pounds across the 1st three days (and nights) with alternating sweats and chills, nausea, dizziness and fog head. The 1st couple of days without sleep are not so bad. But by day/night 3 it starts to unravel. Your whole ability to think becomes compromised and the voices in your head begin to turn into a roar forcing you to question everything you know to be true. By night 4, you are on your knees begging for mercy and wondering why you have become fearful to even try and sleep. You begin to google everything known to man about sleep and become obsesssed with the concept and the science. By night 5, your body is so out of sync it is hard to do anything physical and your emotions have gone bezerk. You question "Am I crazy? Will anyone believe me?" as you cry one moment and laugh the next, all the while wondering if this is real, is it going to continue? What can I do to control it? Why is the adrenaline surging through my body like this? Am I a freak?

Meanwhile you have no appetite or desire to do anything. Your spouse and kids begin to think of you as 1 beer short of a six pack and "how am I going to get to work tomorrow and function?" The doctors want to prescribe you xanax, or klonopin, or some other hypnotic that you know will just lead to tolerance and more of the same. Finally you get down on your knees and pray when the Lord reminds you that he loves you and all will be ok..

Yes when you reach that level of sanity - meaining you know the docs can do little for you, nor your family, nor the drugs and there is nowhere else to turn, all of a sudden your perspective changes and you fight back, you change the way you think. You repent the mind and the body does indeed follow (in some instances immediately and in other instances slowly). For me, my body has been following me slowly over the past two years in which I have slowly disciplined the body to listen to my spirit. And of course my spirit is strong and my body is weak and I continue to fear nights without sleep (I never want to go back that close to the edge) but slowly, ever so slowly, my sleep hunts come back successfully and my body is now responding. Not thanks to the Docs (who are awesome, understand and try to help), and not due to the meds, as they only treat the symptoms, but due to my faith. I hope for things unseen and as I do, they become seen because I refuse to give up my Hope because I know this is the only path back to healh for me.

I wish there was something I could do to help all of you, especially those that are bedridden and so weak you are unable to function normally. Perhaps the only thing I can do is give you my testimony above believe that speaking out loud my daily prayer or meditation is the only thing I can give credit to that has ultimately improved my health.

So for me, just getting my head and heart straight through all this was the issue. I could not get out of bed in my episodes simply because I did not believe I could face the day and fight back. But my faith is strong now, and in turn my body has become stronger.

Don't get me wrong, my doctors have been a huge help and they are absolutely necessary to me and my treatment. But without my focus on my faith and winnning the battle in my mind, I would have never sought out the doctors and I would never have gottne out of bed. I don't say any of this to criticize any one else's experience or situation. We are all different, and this is simply what I have experience. I pray that the Lord blesses you all and that he blesses me! I don't know that I will be able to run that far again tomorrow, but I believe I can, Lord willing, and I will try! Hope you all have a great day.

Edited March 15, 2012 by corina

[redoctober]

Thanks, SH...that was very inspirational. I'm going through quite a hard stretch right now...more stress than I know what to do with...and I truly do think that a large part of "healing" is simply getting one's head straight. Relinquishing what you can't control to a higher power, and focusing on those things that you can control. And focus on things that make you happy and relaxed, rather than worried and tense. Easier said than done, of course...but I'm convinced that it's part of the equation for many of us.

Thanks for sharing...I'm going to bookmark this one to read again when times are tough.

[issie]

SleepHunter,

As you know, I too am a very spiritual minded person and find great comfort in the Bible and the promises that it offers out to mankind for our future. Just knowing that there are better times to come, makes tough times so much more bearable. If you read my profile - my hopes for the future are listed there.

It was quite moving to say the least, what you wrote. I feel the desperation you must have felt and completely understand it myself. Many of us have been there and done that. It does take a lot of talking to myself and figuring out what is truly important in life - to be able to cope with something that is so "there" all the time. But, having a positive attitude and determination with it - can help me to make it through the times that I don't think I can. I try to remember that I have the Almighty there to draw close too and if I draw close to him - he will draw close to me. So wholeheartedly agree with faith as being imperative to endurance.

Really enjoyed your very eloquent post.

Issie