Question About Cardiac Rehab

[HopeSprings]

I brought up Cardiac Rehab to the new Dr. I saw and he liked the idea. I don't even know if I believe it might be a solution, but I think it's worth a try. It'll either help or not, but can't hurt (I don't think). He gave me a prescription, but said it might be difficult to explain to the place that does it (I think my local hosptial does) and to the insurance company. Has anyone with POTS done Cardiac Rehab and what was your experience? Did insurance pick it up? Did the rehab place know what to do with you? Is there a specific exercise program recommended for POTS? And... did it help?

[SpinnyC]

I've been in a cardiac program at a hospital for a few years. Most places seem to have "Rehab" and "Maintenance" programs. Rehab is typically for immediately after a cardiac event or surgery, and only last for a prescribed amount of time. Maintenance is for ongoing exercise typically after you complete rehab (sort of like a gym but with medical staff). My doc initially prescribed rehab but insurance wouldn't cover it so I just went straight to the maintenance program which is self pay.

The program has been great. Initially they helped me to not overdue it. I started very slow and just tried to maintain a balance of not getting deconditioned while also not getting to the point of falling on the ground . I was unmedicated when I started- so really it just helped me maintain the level I was and not add deconditioning on top of Pots. Once I was on medication I was able to increase my activity level a little bit more.

I haven't been doing on a prescribed Pots program, I've just been doing what I can and following the suggestions of the staff. I've had lots of ups and downs in my symptoms and ability level since I've been in the program. So it's been great to have professionals who can monitor my symptoms and adjust my activity level accordingly.

It hasn't cured my Pots my any means- but I feel certain it's helped. Especially after I've had some random cold or virus that's made my pots flare up. Just a week or two with a normal cold sends me back to the beginning in my exercise tolerance- and it takes months to work my way back up. I don't think I could keep climbing back up to my previous exercise level if it wasn't in a cardiac exercise program.

Hope it works out for you!

[Guest Alex]

The only "approved" exercise protocol for POTS would be dr Levine's protocol. Unfortunately I don't think the details are available online, and to my knowledge the exercise regimen is tailored based on the needs/symptoms/HR, BP etc of the patient. The opinions on the protocol are split (no news here) - some say it cured them, others couldn't tolerate it. Levine suggests a combo of recumbent bike, rowing machine and weight lifting, but I'd say that any exercise is better than no exercise.

Alex

[corina]

I'm in Europe so insurance will probably be different. Having said that, I was advized to do a cardiac program but that was way beyond me so my POTS doc decided on a specialized rehab program for me. Unfortunately I couldn't do that at that time (I tried for over 6 months but became worse). When I started octreotide (2 years after the initial rehab program) and learned that it works for me, I was allowed to try rehab again and amazingly succeeded. The rehab programs have been paid for by my insurance (as would the cardio program had I been able to try it).

Wishing you best of luck in getting this paid for Naomi and hopefully it will work for you!!!

[Chaos]

My cardiologist prescribed cardiac rehab for me and my insurance picked it up. The people there didn't know what POTS was but one of the docs did a bunch of research on it and basically they just did their regular protocol with me but adjusted things as my symptoms demanded. I took a lot longer to get thru the program than a regular patient did, in part because I had so many flares that made me miss sessions.

The program also included classes on heart disease etc that weren't especially "appropriate" to my condition but had good general information. It also included one on one counseling with a dietician but they were blown away with the high sodium issue so they didn't quite know what to do with me either. (Isn't that the story of our lives?)

Overall, I think it was beneficial. Certainly didn't cure my POTS but helped me because I tended to push too hard too fast with my exercise and set myself back every time I tried on my own. They were really strict about how much I could do and better at pacing things for me.

[HopeSprings]

Thanks for the input. Sounds like a mixed bag of experiences and a lot probably depends on your insurance and the facility you're dealing with. I'll just have to make some calls and see what I can find out locally. I'll post a follow up if anything positive comes out of this.

[sarahm]

I just finished cardiac rehab and insurance payed for it. I was their first POTS patient, but they talked to my doctors before I started. They were very good to me, it was a great experience. It is in a class so the program is somewhat fixed, but they adapted to my needs as much as possible. They were great to work with and helped me experiment to find out what I could tolerate. They also pushed me to get comfortable so I could continue on my own in a gym. I did one session, but they felt I wasn't ready to graduate so my insurance approved a second session. I eventually decided I needed more flexibility in my exercise program so I didn't use all the approved sessions. It helped me a lot to build back the strength I had lost. I was still using a cane when I started now I'm not. They also help you find your limits and listen to your body. So its especially helpful if you are nervous about starting to exercise. I am very happy I did it.

[HopeSprings]

That's great to hear, Sarah! I'm glad you benefitted from the program and had cooperation from your insurance company.

[Angela]

well, I know I've read some people feel better, more energized when they exercise via cardio. The only thing I can do is mat yoga/pilates and I do feel better, maybe tired yet energized but anything else, even a 20 minute walk with my son to look at holiday lights and I am out within 15 minutes of return home. Not sure why. Wish I could get better endurance but just doesn't seem to be happening for me, for right now at least.

[kitt]

I'm due to start cardio rehab soon.

My cardiologist explained that it takes a very long time to work, and it's done while your HR and BP are being monitored and with fluids etc..

He explained that for POTS patients it helps the sympathetic and parasympathetic nervous system adapt to postural changes. Another way is to say it helps with orthostatic intolerance.

In many POTS patients the heart is atrophied due to de-conditioning, and if all so it will also strengthen the heart and make it larger, and 'conditioned. I'm looking forward to trying it, I have a lot of faith in the cardiologist I see.

As for insurance, I have 40 sessions of physical therapy a year. I haven't checked to see if this falls into the 'physical therapy' category, but my insurance has covered everything thus far, so am assuming it will. Hope so!

I'm looking forward to trying it, I have a lot of faith in the cardiologist I see.

Here's a quote from Levine, (not my favorite Pots expert, but whatever) Here's what he says about cardiac reconditioning...

Pasting:

However in the chronic phase, the hemodynamics are dominated by the physiology of cardiovascular deconditioning - and the evidence is that when we reverse this pathophysiology, by increasing the amount of blood the heart contains and can pump with each heart beat, that HR goes down, sympathetic nervous activity goes down, and the patients feel better.