Physical Therapy For Pots?

[ajw4790]

Hi all!

Has anyone had physical therapy for POTS/dysautonomia symptoms? I was just curious if it worked for you and what you found that helped you?

I have seen online that a couple of therapists that work with POTS patients exist, and was wondering if anyone has seen them?

I have been trying to brainstorm this route of treatment and was looking for any guidance ya'll may have.

Thanks!

[doctorguest]

I am aware that cardiac rehab and physical therapy may help patients with POTS. The one aspect where it's not clear how/if exercise helps is fatigue. As POTS is not one disease but a spectrum of conditions, if chronic fatigue is the major issue, the exercise regimen might be different than if someone has POTS but without the overwhelming fatigue. This is a huge area of research, and I hope that we get more knowledge on the topic soon.

[morgan617]

I have had two therapists ask me not see them any more, because I am so exercise intolerant, but I don't know if that's really the norm. I have a disease that's under the umbrella of Muscular Dystrophy on top of POTS and think that may be more of the problem in my case.

You won't know till you try whether it will help you or not. You just want to make sure the therapist understands that "I have limitations" is relative. I told the second therapist that the first one said I was too weak for P.T., and he burst out laughing, saying that was absurd, it was the reason for P.T. After our third visit (he came to my house) he said I was too weak for it. And apologized. So the communication lines have to be wide open. Everything with this illness is so individual, but you just have to try. The worst that can happen is, it won't help and you may feel worse for a bit. Which is not fun, but at least you know. Good luck sweetie... morgan

[Guest tearose]

It is good to learn as much as you need to help make your body function as well as it can. I think I did physical therapy to learn how not injure myself from leaning forward to compensate for feeling faint. I benefited from their help to learn proper body usage and how to build myself up after a relapse. I think a lot of it was things I knew but just had not put it all together.

I learned a lot from an occupational therapist too. How to make my way around the kitchen carefully, pacing myself and not tire myself out...

I think I most benefited from cardiac rehab. There I felt real free to push the envelope and not worry about my heart. They have you wear a special monitor and you do the exercises they plan out for you. If your heart starts doing something dangerous or nearing dangerous, the bells and whistles go off at their front desk and they tell you to slow down or stop. It helped the drs. to see how in real life my heart is responding to activity and rest. I started to wear my polar heartrate monitor at that time too. I think going to cardiac rehab was an extremely helpful step on my journey. I use the skills I learned there even to this day. Frankly, the doctors probably learned more than I did! I knew there was funkyness I just didn't know how to describe it until they saw it and I could say.. Yes, that is what I call the thump thump, and yes, that is what I call a fast beat or a skippping feeling...

I must add, after two months of two times a week, I was asked to stop doing the program, take copies of my strips and to consult with a cardiologist and be cleared before returning. I did go to doctor and decided to just continue exercising on my own. That was over eight years ago.

tell us what you decide to do, take care,

tearose

[ajw4790]

Doctorguest,

Is there any literature/research out there on this topic? I have not run across much of anything. Thanks, for your help. I do realize that it is highly dependent on the symptoms of the patient. But, I have been interested in as a whole (dysautonomia) what information was out there on therapy and exercise. Such as rules of thumb on what to work out to as far as HR, BP etc. due to not responding the same as in "normal" persons. I am aware of some of the general rules ACSM etc., but curious on what may have been found specific to this subset of the population (other than treating like a patient with Fibromyalgia or Diabetes) .

As well as what works, what doesn't, and what to avoid (due to possible fainting, exercise intolerance, etc).

Thanks!

[doctorguest]

I don't think there is any data published on the topic. In the past, resistance training where you increase the muscle bulk of the lower extremities, which in turn improves the venous return when you stand, was recommended for patients with OI and NCS. I think there are studies going on right now in TX looking at exercise training in patients with POTS, so it would be nice to review the results when these become available.

I also know of another study on the effect of exercise in patients with Chronic Fatigue Syndrome, and in that study, the researchers did not differentiate between POTS, NCS, etc. so the patient population may not accurately represent patients with POTS or even a general autonomic dysfunction (since CFS is even more complicated diagnosis than POTS ). In that study, I believe they showed that on the first day of exercise, the anaerobic threshold was still somewhere within the normal limits in patients with CFS, but on the second day of exercise, the anaerobic threshold was significantly below the normal range. They concluded that this finding may correlate with the post-exertional fatigue experienced by CFS patients after a physical activity. Keep in mind that research in this area is still in its embryonic stages, but at least there are some groups out there that are interested in this topic.

I think a good option might be to get in touch with your cardiologist so that she/he could refer you for cardiac rehab where they can monitor your HR, BP, etc., and provide a safe environment for exercise, as somebody had mentioned.

[yogini]

FYI, I asked my cardio about this a while ago and he said that he has trouble getting cardiac rehab approved even for some of his serious patients like stroke victims. And I actually have pretty decent insurance. I am not one of the worst cases of POTS, but had a lot of trouble exercising, esp at first, and could've benefitted from some guidance. Just wanted to mention that ins coverage might be an issue...though hopefully not for you!

[juliegee]

Hi There-

I copied and pasted this from an earlier post (with a few updates) as I thought it might be helpful. So far, the replies you received have focused on "traditional" PT. I think, depending on your level of functioning, that that can be very helpful as good cardiac conditioning alwys improves my symptoms. The following, however, focuses on an alternative PT that both my son and I have found helpful. It's sort of "out there," but Mack's pediatrician from Hopkins was adamant that he partake.

Mack, my 15 y/o, is treated by Dr. Peter Rowe at Johns Hopkins, a leader in the filed of dysautonomia for teens. Dr. Rowe highly recommends that Mack (and all of his patients) participate in weekly PT. He advocates a type of therapy called "Manual Therapy." The practioner simply places his hands on Mack in a variety of positions, while he lies still on a table. Mack often goes into PT feeling lightheaded and nauseous and always comes out feeling terrific. The practioner can "feel" what's going on with Mack's body simply by placing his hands on him and subsequently treats whatever is flaring Google "Integrative Manual Therapy" to learn more about this.

After a year of IMT with good results, Dr. Rowe insisted that Mack go on to see an osteopath for cranial therapy. He recommended a specific D.O. in Atlanta (who was an hour away from us.) This fellow was trained by Robert Fulford, who was immortalized in Andrew Weil's book "Spontaneous Healing." At Mack's first visit, the doctor placed his hands above Mack's body to feel his energy. He felt good energy on his head and NONE on his body. He claimed everything was blocked below his neck. He placed his hands on Mack, like the PT, but then proceeded to go into a trance. (I thought he was sleeping.) His chin would actually touch his chest for long periods. Then he pops awake and says things like "Thar' she goes!" Once he "unwound" Mack. He basically twisted his upper torso around and around while Mack sat on the exam table. Unlike IMT, Mack often felt badly after treatments, but always rebounded to a higher level of recovery.

Mack, due to his dysautonomia and motility issues was out of school almost ALL of 7th grade. His weight got down to 100lbs at 5'8" and he was so lightheaded, he often couldn't sit up. He's now back at school full-time. He now weighs a whopping 160lbs and is over 6' 1" tall. He hasn't missed a day of school and has earned straight A's on his report card. (Excuse the bragging!)

I was VERY skeptical of these therapies, but because they were strongly recommended by Dr. Rowe, I conceded and am very glad I did. Mack has improved in leaps and bounds.

I've also done the Manual Therapy to help with GI motility issues caused by my dysautonomia. Prior to the therapy, I had to use eyrthromycin as a GI prokinetic to help me eat. Now, I just use Miralax and phenergan as needed. The nausea is much improved after 6 months of IMT.

I think it's good to be open to alternative physical therapies especially if they come recommended by credible experts.

Julie

[pat57]

thank you for letting us know about your experiences- Macks mom. So happy to hear of his improvement !!!!!!!!!!!

[yogini]

Julie,

Is the manual therapy just for GI problems or also for POTS in general? Is it covered by insurance?

Thanks,

Rita

[Sunfish]

rita -

i'm not julie (as i'm sure you can see!) but i'm familiar with manual therapy as well (via dr. rowe) and it's not just for GI issues but rather dysautonomia in general. it's more important for some than for others (which can be determined by a knowledgable therapist) and can be covered my insurance under PT benefits. i worked some with the PT that dr. rowe works with/ refers to in baltimore and my insurance covered it without any questions. i had my copay, but the same as any PT appt would have been.

julie (and others) will hopefully answer as well but i thought i'd chime in too.

melissa

[Lenna]

Wow, Manual Therapy sounds so bizzarre, but really no more bizzarre than having needles stuck all over your body, and I'm a total believer in acupuncture! But unfortunately acupuncture didn't do much for my son who has POTS. Julie, you said that your son had therapy once a week and felt great whenver he had it. Did the good effects last for the whole week? How many sessions did he have before he started getting results? In what ways did he feel better - dizziness? nausea? energy?

Thanks for sharing this with us.

-Lenna

[MightyMouse]

Didn't help me--in fact, the last round I did in Aug and Sept actually made me worse and I had to stop.

Nina

[juliegee]

Hi There-

Ditto to everything that Melissa said. Yep, it's covered by insurance and yep it's recommended (by Dr. Rowe via some Australian studies) for dysautonomia.

As far as feeling better....Mack (and I) always felt better after IMT. There are certain ways the PT puts his hands on your body to literally STOP a headache or nausea. We were taught how to do this for ourselves. When my symptoms were very severe, like nausea for instance, I could stop it with IMT; but it returned as soon as I stopped. Despite this, I think we both showed gradual improvements in all dysautonomia symptoms that we were able to maintain over time.

We also had homework where we had to do our own IMT for 15 mins. daily. For both of us, we were also given gentle yoga stretches to do inconjunction with the IMT. Mack is very inflexible/tight. The PT also worked with him measuring how far his flexibility increased after treatments- a lot.

After a year of IMT, Dr. Rowe was not satisfied with Mack's improvement. That's when he insisted that Mack begin doing the cranial therapy with an osteopath trained by Dr. Robert Fulford. Dr. Rowe actually recommended a specific practitioner. That guy was soooo strange. He actually went into trances while he was treating my son. Like Nina, Mack often felt much worse after his treatments. One time he actually got violently ill with vomiting and "D" on the way home. But, we were warned that Mack might have some temporary adverse reactions to treatments. He did! But, after recovering a few days later, he got to a stronger healthier level with each treatment. I think he only saw the osteopath 6-7 times. That treatment seemed to be much more effective in the long run than the IMT or manual therapy. (Although the IMT made him (and me) feel better in the short term.) Maybe it was the combination that was most effective.

Dr. Andrew Weil's book "Spontaneous Healing" has a chapter devoted to Dr. Robert Fulford and his therapy. You will find a better explanation there. Maybe you can google him to learn more.

My son was desperately ill and we were willing to do ANYTHING to get him better. It's been approximately a year since he stopped the PT and Mack has pretty consistently maintained his improvement. Because Dr. Rowe was so insistent, I overlooked my natural skepticism and gave the alternative PT's a try. They helped us.

Julie

[ajw4790]

Hi,

Thanks for your input! I find the info intriguing! Macks Mom (or others) do you know of any research studies published on this topic?

Thanks!!!

[juliegee]

Yes, Dr. Rowe gave me the abstract for a study, I think it was Australian. I'm off to a volunteer gig now, but will scout it out later and post the info.

Julie

[Ernie]

Hi,

I had PT when I was 3 months in the hospital. They kept me in bed for 2 months and I was so deconditioned by all the treatment and med changes. I had to have rehab to be able to walk again. They wanted to send me in a nursing home for the rest of my life and I fighted with them saying that I could learn to walk and be upright and I managed to convince them. They gave me one month in a rehab center but 2 weeks of training. The first 2 weeks I was on bedrest because they were freaking out as when I arrived there by ambulance I passed out within the first hour and I had no BP for about 2 minutes. I was the first POTS patient they had in their history so they did not know how to manage my case so I had to literally "destroy" walls otherwise they would have kept me on bed rest for the rest of my life.