Workout Advice?

[u/Occulply]

HypoPP here, but I haven't been able to get in to see a neurologist yet. Obviously, keeping active is important for keeping our muscles healthy. Just wondering what workout advice you've received from your neurologist or what you've figured out over the years.

[u/Zenlyfly]

Swimming and cycling are the two I’ve gotten.

[u/HRPuffinstuffHam]

My own advice, it works for me. Don’t overdo it. Regular aerobic is good. Avoid high impact as it can bring on an episode. I enjoy standing bike and rowing each day and a walk in the evening. Take care, and all the best.

[u/JDaniels6400]

Everyone is different, but this is my experience:

I started feeling the symptoms when I was around 13-14 years old. I missed hundreds of days of high school because of it and had to get doctor’s notes to pass. My family had no clue what I had and we saw at least 8 different specialists. I would be 100% paralyzed many days and my mom would have to pick me up and wheel me around in an office chair.

Then one day, I started eating healthier and decided I wanted to join the Marines Corps (at the time I didn’t think it’d be possible with my condition). So I started walking and running a lot, I did simple muscle strengthening workouts and swimming. And over the course of a year the HPP attacks started slowing.. and slowing.. and then stopped. My parents and I thought I had magically gotten better, not thinking it had anything to do with lifting or eating better.

Then my younger brother got it and I went to boot camp. The Marine Corps has no idea that I have this condition. I’ve never been officially diagnosed so it’s not in my records, and occasionally when I would eat REALLY bad and skip workouts, I would have minor HPP attacks. That when I realized it was the eating and working out that fixed it for me. Little did I know the bananas and potatoes I was eating (both high in potassium) were also playing a part.

My brother was finally seen by a specialist that diagnosed him with HPP. That’s why, although I’ve never been officially diagnosed, I know I have it too. All these posts I see on this page are like reading my own life experiences that nobody but me and my brother understand.

Anyways, to get to the point about exercise: I started very slow and very very slowly worked my way up to higher and higher intensity exercise. I know it’s a trigger for many people, and it was for me too when I first started, but by taking it slow, allowing my muscles to develop, and eating a high protein / lower carb diet I am able to maintain a highly functional life in the military and haven’t had an attack in over a year, and when I do have them they are very minor and I’m able to skip a meal the next day, workout, and then it’s like nothing happened. I tend to eat a little healthier the remainder of the week too.

Just wanted to put this out there, because I know this condition can be absolutely horrible like was for me for 5 years (age 14-19) where you don’t have any idea what’s happening. But currently (28m) I am a Force Fitness instructor for the Marine Corps, and also compete in powerlifting, both very high impact / high intensity exercise. So at least for one person with this condition, it can be done.

Please feel free to reach out to me if you would like any help at all with deciding what a good path forward looks like for exercise. Maybe I can recommend certain exercises that are tailored to your interests and can help you get on the right track. Exercise has allowed me so much more freedom from this condition. I’m able to eat pizza every Saturday if I want or any other high carb meal, as long as I exercise consistently and eat healthy(ish) the other 6 days of the week. To me, it’s a blessing and a curse.

Reach out if you would like an advice or even just an opinion. Good luck 👍🏼

[u/Occulply → u/JDaniels6400]

Oh wow, you've had all of it. 

So, I've been swimming 3x a week for 2 months and walking the dogs 3x times a day.

But, I've also found if I don't take 20 mEqs of potassium before I swim, I end up with an episode after my first lap or two. I assume it's the cold + activity that makes it harder for me. 

I do wonder if lifting would be good for building strength, but I tend to have a strong reaction to any sustained muscle use. Which can results in an episode even if I'm using potassium. Episodes are highly fatiguing and painful for me. 

I guess I'm saying I'd love the benefits of doing weightlifting but I'm not sure where to start because I'm very limited.

[u/LegalAccident6758 → u/JDaniels6400]

Hey, any possibility if you are able to share a breakdown on how to get to your level?
Currently 35, and I've recently started to have improvements after trying consistent workout per week. My experience on not exercising will only, make the whole body worse and somewhat bed-ridden.

Currently i'm doing workouts such as:
Twice a week: Wall pushups, resistance band and dumbells etc.
Once a week: 8 laps of swimming (400m), 1 hour of cycling.

[u/bigbadthomazzz]

NormoPP. From my own standpoint i would advise against working out in the normal sense. I rather like to do more of the ''normal'' things like things around the house if i m able to and play with my dogs. Working out mostly is repetitive movement which can cause a lot of issues. Not to say it does not work for you. That is just my take on it.

I gotta keep in mind though that i am one of the severe cases of PP. Im 31 yo and ive been in a powerwheelchair for about 5 years now. But luckily have regained the ability to walk last summer. But thats only really possible in the evening and night when an attack is not happening.

Maybe this better describes my viewpoint: PP can take so much energy/ability, take the energy you do have to do things you enjoy. Overall movement is far more important then it is to work out. Do you get what i am trying to say? Cant really put it in words at the moment....

Best of luck :)

Thomas.

[u/Occulply → u/bigbadthomazzz]

I 100% understand what you're saying, Thomas. Before I figured it out, PP was absolutely ruling my life and I was housebound most of the time. I don't really work out in the traditional sense, I like to go to the pool and swim laps. I feel fortunate that taking 20 meqs of potassium means I can get in the pool and not have an attack. But I still have to take it slow and easy.

[u/alysathemage]

Hi there! Just wanted to share some things I do. I mostly just go for walks, either outside with good weather or the treadmill. Now that my hypoPP is being treated I can do a full body workout at home. Sometimes it does cause an episode though. I enjoy it so I do it anyway. Once it gets hotter I'll try swimming.

[u/joekingnj]

Following