Raisin Posted February 23, 2014 Report Share Posted February 23, 2014 Anyone try intensive physical therapy? No one answered my previous post....perhaps I was too specific. Doc is prescribing intensive POTS physical therapy for me. I am worried that if it is caused by something else that they haven't figured out yet....perhaps it will just get worse? Maybe it is worth a shot in any case. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 23, 2014 Report Share Posted February 23, 2014 Sounds like an avenue to try Quote Link to comment Share on other sites More sharing options...
corina Posted February 23, 2014 Report Share Posted February 23, 2014 Hi Raisin, I'm currently working with a rehad pt and a physiologist (who measures hr, breathing and recup time). I did a basic (easy) program for 3 weeks (biking, some ground exercizes and walking) and will start with a more intensive program tomorrow. I'm not sure if I can handle it (so far I haven't done really well) but will of course give it a try and hope it will work for me. I want to try everything that may give me a better quality of life! If you have serious concerns I think you'd best share them with your doctor! Quote Link to comment Share on other sites More sharing options...
Raisin Posted February 24, 2014 Author Report Share Posted February 24, 2014 Thanks guys! I will give it a shot. In fact, I am kinda looking forward to it. I noticed Corina that on my sheet for the appt. it mentions a physiologist as well. I am glad you mentioned that they may be monitoring hr and things. I will make sure to tell them that my EKG went "funny" during the TTT too. I have doc permission obviously as he is the one that referred me. Lol I wish you well and I hope we all get better and better! Quote Link to comment Share on other sites More sharing options...
corina Posted February 24, 2014 Report Share Posted February 24, 2014 Sounds great! Haha I always look forward to go too, no matter how bad I did the time before! You never know right?! Let's try and get better Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 24, 2014 Report Share Posted February 24, 2014 Physical therapy is a great way to get started with exercise. Start slow and pace your self. May want to try every other day at first.Rachel Quote Link to comment Share on other sites More sharing options...
Jennnn Posted February 24, 2014 Report Share Posted February 24, 2014 I go to PT and could not exercise without it. I am doing the pre-training months for the Levine program but I get so sore from bad posture/hyper mobility that I could not do it without the help of an awesome PT and chiropractor to put me back together. I do get a lot of help with how to exercise in PT as well. I get super tight in my neck/shoulders from POTS (coat hanger pain). Quote Link to comment Share on other sites More sharing options...
Potsie0002 Posted March 13, 2014 Report Share Posted March 13, 2014 I have had success with a gradual increase of stationary biking, based on Dr. Levine's program but more gradual. No standing up to exercise and it took me 6 months to see a lot of improvement. I also consulted with a physical therapist to develop a Pilates type routine, all lying down. This has helped my symptoms a lot, but I continue to use many of the basic daily strategies to manage it. Quote Link to comment Share on other sites More sharing options...
cupcakemomma5 Posted March 13, 2014 Report Share Posted March 13, 2014 I was doing a pt program at our cardiac rehabilitation facility, it was okay. I definitely stood out from everyone. Everyone else was walking and doing group exercise and I couldn't follow along. That was the only frustrating part. I did end up on a rower for 20 minutes, which I loved. Right now I am doing yoga every Monday and I find that helps as well.I would love to have a personal trainer who knows about the symptoms and how to go about treating us, mine was more frustrated because I didn't really belong (in her mind anyway...lol)Enjoy it, and just make sure you document how you are feeling and what your body is doing, this way, you will know for the next time that maybe "X" amount worked great or didn't...Good Luck Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 13, 2014 Author Report Share Posted March 13, 2014 Thanks everyone! I talked to a doc yesterday and he wrote everything out in detail for me and I can do all this at a local gym! Based on the Levine system as well. Starting out on the recumbent bike...moving slowly to the upright bike, etc. he said that 55% of POTS pts. Report a cease of symptoms and 90% report symptom improvement. He also said that you can't do more than the designated exercises (ie. feel good one day and think you should go longer) because the exercises are designed to retrain your body slowly so that the nervous system doesn't overreact. He also said, though, that you have to keep on exercising usually to keep symptoms at bay. He also said to do every other day( like you suggested looneymom) as going two days in a row can actually make symptoms worse. I also did a stress test and I did 30% better than most people in my age group which I am proud of because that means I am proving those folks who said, "you are just out of shape" wrong! Ha! Quote Link to comment Share on other sites More sharing options...
Becia Posted March 13, 2014 Report Share Posted March 13, 2014 I asked my GP yesterday about therapy, seeing as everyone I see mentions doing it, but yet no one will say "Yes, lets do this" and get it scheduled. I'm doing yoga and light stuff here, am looking at a heart rate monitor to watch the tachy issues for working out at home. I see a new cardiologist next month, and he already got it mentioned to him that I want to do some sort of cardiac or physical therapy, and to keep doing what i'm doing at home until this comes to fruition. I'm excited, ready to do this, ready to be moving again. I'm hoping this helps with the cramping in my legs, and might help me build some endurance to get the blood back to my brain when I'm standing. That's my problem, I dont really feel I've deconditioned a bunch since I've been using a wheelchair, but most people think "Oh she can't walk." I can walk, my body just doesn't regulate and allow me to keep going without passing out. I've got leg strength, I'm good there, but the bloodflow to the brain, and the tachycardia, my body goes all crazy and feels like it has to shut down (pass out) to get control again. Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted March 13, 2014 Report Share Posted March 13, 2014 I was just going to start a post about this. Glad you mentioned it. I just started physical therapy based on the suggestion from my neurologist at Stanford. Yet, the physical therapist and I both weren't sure why I was there and what the goal is. I have been able to work out consistently over the past year on my stationary bike and doing strength. But I started having difficulty walking 10 months and now use a cane. No one is sure why I am having trouble walking so the physical therapist isn't sure how to treat it. He told me to start doing vestibular exercises and to not fight being vertical so often, which is difficult because I'm a teacher and have to work hard to conserve my energy at work. I have my next appointment tomorrow. The adventure continues Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted March 13, 2014 Report Share Posted March 13, 2014 One more, the physical therapist did mention cardiac rehab where your pulse and bp is monitored during exercise. It might be worthwhile to look into it. Quote Link to comment Share on other sites More sharing options...
Tobiano Posted March 13, 2014 Report Share Posted March 13, 2014 I'm doing cardiac rehab right now... mostly recumbent biking (5 days per week) with some light resistance training (twice a week). Been doing the program for about 3.5 months. Honestly, I have not noticed a difference in my dysautonomia symptoms, which is disappointing. But still want to go ahead with the exercise for general health reasons. Cupcakemomma- I definitely agree that I'm the misfit.... one of these things is not like the other... Everyone else does laps around the track and I watch from the recumbent bike - I do wave to them as they circle me. Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 13, 2014 Author Report Share Posted March 13, 2014 The place I went was in the cardiac rehab at Cleveland Clinic. And, I guess if you go to there "gym" they will monitor blood pressure and hr. But, it seems they are sending me off to a regular gym of my choice to do everything on my own. The upside of this is that I don't have a copayment for physical therapy everytime. Downside....I am on my own. Doc said if you have to retrain your body and wrote out specific instructions as to work load and target heart rates. He said even if you feel like doing more...don't....because that will mess things up. I am going to order a hr monitor before I begin. I also use a cane most days and wonder if my legs will cooperate on a bicycle but I will try and if not, maybe a rowing machine? UnderwaterThing...I did vestibular exercises before and we figured out I use my eyes and my muscles almost exclusively for balance (not my balance centers in the ears). It is worth a shot I feel but I think at this point for me it is a disconnect between my legs and my brain or spinal cord or something. Why can't the docs figure this ataxia thing out? It seems like a bunch of us have some crazy symptoms not really covered under the POTS umbrella but it is like an elephant in the room that no one acknowledges. Ugh. Quote Link to comment Share on other sites More sharing options...
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