Tilt Training Caused Major Flare

[TXPOTS]

Has anyone been prescribed tilt training at home? You basically stand with your feet approximately 15 inches from the wall and lean back. I was prescribed 10 minutes twice a day and to build up. I attempted this a few weeks ago and had difficulty even lasting a few minutes, so I stopped and concentrated on exercise instead. I feel better during exercise. For the past 4 days, I resumed tilt training and have been forcing 10 minutes/ day. My legs turn purple and blue within 2 minutes, and I feel very ill by the end of the 10 minutes. I pushed forward for 4 days.

Well, since yesterday's session, I've been in a major POTS flare. I haven't had symptoms like this in almost 6 months. I am feeling absolutely rotten (on death's door to be specific). I am very frustrated because I have come along way in 6 months. Despite still being very debilitated, I am able to partake in a relatively vigorous exercise regimen and take care of my and my children's basic needs. My husband can work without worrying about me. I am so upset that I find myself back at square one due to this stupid tilt training.

Has tilt training caused a major flare in anyone else? What is the best way to pull out of a flare and back to my usual crappy self?

[juliegee]

Sorry, Texas My guess is that you should stop and let whomever prescribed this for you KNOW what is happening. It takes a while to pull out of a bad flare & you've been doing so well. THIS is definitely not helping. BTW, have you ever tried compression garments? Just wonder if that'd make a difference. Not easy in this heat....

Feel better-

Julie

[Tammy]

Tilt training was one of the first exercises recommended to me years ago. I was unsuccessful in doing the training as I also felt worse after doing it. Just give yourself a few weeks /months to get back to the level you were at. It seems time is what helps us to recover.

[lieze]

Well first of all I feel really silly because I didn't realize your name was Texas. I thought the TX stood for treatment. I was calling you treatment pots.

Next I hope maybe you bounce back quick.

I was having the exact same ???'s how could I have been doing so well and then to go down in the grocery store like that?

Well I think maybe I just over did it that week.

Son was at camp invention that week. I had trips across town twice per day.

Daughter was at princess camp also and so trips to a neighboring town in the evenings.

Then they called and wanted me to work an 8 hr shift and the night before that husband raged at me about my Pots.

Saturday then we took the kids shopping and I had to just go sit down.

Then Sunday I did the big crash and went into the hospital and went into a raging case of anxiety.

For about 2-3 days I was tachy. Even last night I screamed myself awake three times.

I am starting to feel better and was able to drive today just here local.

That's improvement so I hope you see a similarly fairly quick rebound.

Do what you can to acclimate if you can.

I notice I stop reacting as wildly on subsequent attempts at things.

Good luck-let us know how it goes.

[ana_22]

yes, me too!

i did this tilt training 1 year ago. one day i was feeling ok so i thought what the **** ill do 20 minutes......

about an hour after the tilt training my body felt like death (or even more so than usual!) i had to lay down, but then got this weird feeling i have to throw up or either have a BM (bowel movent). i was shaking, sweating, tachy, it was awful..... when it hadnt calmed down i went to get fluids. which kinda helped.

i learnt from then to def not push it or i would pay for it.

[nunntrio]

Sorry you are feeling bad. I have never even heard of tilt training. Did your Dr. in Dallas recommend it? I can say that I have had some horriable experiences with some treatments Dr. recommended. I once tried to tilt my bed per a Dr. recommendation and that left my feeling awful for days.

I hope you start feeling better.

[TXPOTS]

Thanks everyone for the responses.

I am feeling better than yesterday and was able to resume light activity at the gym. So, I'm back to the yucky POTSy me and not the " I am dying. Take me to the ER pronto" POTSy me. Whew, won't be doing that tilt training again. I read some studies that tilt training can be very effective for NCS, but it must not jive with my particular kind of POTS.

Mack's Mom,

To my disappointment, compression hose (30-40 mmHg) waist highs don't do a thing. I have also tried an abdominal binder. This is perplexing, since I can visually see my legs turning blue.

Lieze,

LOL... I wish I was treatment POTS. The super effective treatment plans have evaded me thus far. This illness really waxes and wanes from day to day. It seems if we do too much or the wrong activities that we pay big time later.

Ana and Tammy,

Glad that I'm not the only one that is not able to tolerate tilt training. Thanks for sharing your experiences.

Nunntrio,

Yes, my Dallas doc recommended the tilt training. He has been working hard with me to try to get me more functional. Much of what we have tried has failed, but he is good about not giving up and moving on with the next treatment plan. It must be the nature of POTS. Treatment that makes one patient better makes another patient worse. I still recommend him.

[nunntrio]

Nunntrio,

Yes, my Dallas doc recommended the tilt training. He has been working hard with me to try to get me more functional. Much of what we have tried has failed, but he is good about not giving up and moving on with the next treatment plan. It must be the nature of POTS. Treatment that makes one patient better makes another patient worse. I still recommend him.

I am glad you are feeling at least back to your normal "pots" self. You are very lucky to have a Dr. that is willing to keep trying, that type of Dr. is hard to find. I hope you did not mind me asking, I certianly did not mean anything negative by it. I am actually impressed that they are at least willing to try. I really need a POTS Dr. that is willing to do follow up care.

[TXPOTS]

Nunntrio,

Yes, my Dallas doc recommended the tilt training. He has been working hard with me to try to get me more functional. Much of what we have tried has failed, but he is good about not giving up and moving on with the next treatment plan. It must be the nature of POTS. Treatment that makes one patient better makes another patient worse. I still recommend him.

I am glad you are feeling at least back to your normal "pots" self. You are very lucky to have a Dr. that is willing to keep trying, that type of Dr. is hard to find. I hope you did not mind me asking, I certianly did not mean anything negative by it. I am actually impressed that they are at least willing to try. I really need a POTS Dr. that is willing to do follow up care.

Nunntrio,

I know you did not mean anything negative. I didn't want to discourage you at all from seeing him, because he does have tons of different ideas. I have been a really, really tough case, as most of his patients get back to a what he considers a level 8 out of 10. I have stalled out, which is often is the case, but we keep hoping and trying different approaches. I am going back in 3 weeks for most testing and a different plan. I am also on the waiting list to see Dr. Levine since he takes an interest in exercise, and exercise has been the most beneficial for me as far as treatment thus far. I hope both of us eventually get past this awful syndrome.