Wait, Is This For Real?

[Ashelton80]

I am not on the forum much anymore, but I did want to add that I started Dr. Levine's protocol two weeks ago. I hired a personal trainer to help for the first month. I am completing the VERY long cardio sessions and am surprised at how well my body is handling this. I was very afraid of the whole getting worse before getting better, but I am very happy to say that I am already feeling the benefits and improving. I did have to address food intolerances and change my diet to gluten/dairy free 3 months prior to starting the exercise. I am positive I wouldn't have tolerated the exercise this well if I hadn't addressed that first.

For me personally, the more I focused on wanting to know the scientific reason I had POTS was just prolonging me getting any better. I don't know if my heart is smaller (didn't show up on an ECHO, but supposedly Dr. Levine does an MRI) and I accepted that I may never know the answer and I'm ok with that now. If I have to exercise 6 days a week for the rest of my life to "live" then so be it. If I never get to touch another piece of bread or eat a cupcake (other than gf of course ) then I'm ok with that if it means I can get out of bed and function. It's a sacrifice that's for sure, but it's well worth it. I am more hopeful since starting the exercise than I have been in 2 years! I would urge anyone to give it try!

[sue1234]

BTW, Julie, thanks for posting your story. It was good to read.

[futurehope]

Ashelton80,

I am so happy for you! It is wonderful to feel that glimmer of hope, and the thrill of the success.

If I desire, I will need to find a cardiologist who will support me if I want to do the Dr. Levine program. Right now, I'm haphazardly doing my own thing.

[toddm1960]

In my past life I was a personal trainer, I worked out 6 days a week when this hit me. So I'd say that exercising didn't keep it away, and I continued to try and push myself after I first was getting sick, only to feel worse and worse. I love exercising so much for the past 6 years I keep trying, holding out hope I can find my old self again. The hardest part of it all is that 6 years later I'm still at square one, i can't build on my workouts. On day one I can do 5 minutes on my schwinn Airdyne, on day two I can only do 2 and half minutes but I'm trying twice as hard. On day three I'm a car wreck and can't even get on the bike, and more of the same for day 4. I can't get back on until day 6, so I start over......you get the picture 6 years later I'm still here at square one.

I'm very happy for those this helps, I just have a huge problem with studies that say they have CURED pots all you need to do is try. And if you're not cured you didn't try hard enough. I kept looking for the study to say CBT was also needed for the cure. So by his study I should be cured Not so much, but I still dream about the day I'll be able to workout and feel that rush of lifting weights till you dropped.......oh what a feeling.

[Lovebug]

I agree with your statements "feel like I am being blamed for having this illness"! For a while I was a recluse and I was accused of being depression or it being "all in my head". I finally had to say..."if you felt this bad, wouldn't you be depressed!?!". I even had a doctor tell me, "if you tell yourself you're sick enough, you WILL be sick"! Even my own mother thinks I just worry & stress myself out. I told her that it's hard NOT to be stressed with this and that this condition preceded all the worry. Furthermore...do we blame diabetics b/c their pancreas isn't working right? Do we blame cancer patients b/c they have an overgrowth of malignant cells.........how dare they!!!! What about stroke patients? **** them for having a blockage (or bleed) thus allowing a stroke. It MUST have originated in their heads (no pun intended)!Even for diseases that the patient could be blamed for, they get better treatment than we do: i.e. liver disease (alcoholics), heart disease (diet & smoking), drug users, etc. Sorry for the rant, lol!

[Lovebug]

I somewhat agree with you...I was actually exercising strenuously when I first got sick. And then I quit and became worse & worse. I'm really good at pushing myself. I took a stress test at the end of January and lasted 10 or 15 minutes. I thought "this is great"...they even gave me some IVF and I shopped afterwards, felt great. Well, the next 4-5 days I was suffering, stuck supine in my recliner b/c I was orthostatic again. I had all my Dys symptos. My cardiologist told me I just need to go slow and realize that anything I do will take me longer to recover (such as surgery, etc). He recommened 5 minutes of walking (NOT walking fast)...just walking. Then to gradually increase it. I've started out with 3 minutes and will be increasing to 5 this week. I do 2 weeks before increasing. We'll see how it goes.

I am curious as to what Dr. Levine's program is...can anyone post what he says to do? What is his regimen?

[janietrudell]

Not in my case nor my sons. I have run my whole life and my son started sports when he was 4. It wasn't until high school that he developed Pots and we believe it may have started because his exercising became more strenuous. He is now unable to exercise without vomiting.

Janie

[toddm1960]

OK so I've looked back through this post and the score still seems to be people cured by exercise........ZERO. If I missed someone please stand up and let us know you're cured, because that is his statement at the end of the study. That's all I have a problem with. Anyone one of us with dysautonomia would do ANYTHING to get better, to have a doctor tell us we're not getting because we're not trying is just too much.

[Ashelton80]

Basically the definition of "cure" is the restoration of health. I understand that it is frustrating when it seems you were in great shape when all of this happened, and I have heard that on several occasions. I think exercise can be a huge stressor on the body along with food, etc. especially if not done specifically for the condition. Like I said earlier and someone else said about their MCAD, if I hadn't addressed the food intolerances first I have a feeling my attempts would have been similar to yours. Also, when I hear of people attempting exercise they are usually doing things like walking or eliptical or lifting weights in an upright position. Dr. Levine's protocol does none of this. It is all in a seated position. There is absolutely no way I could do almost an hour of cardio standing, but I can sure do it sitting.

I can only speak for myself, but I didn't really get into the specifics of the protocol. I didn't start this protocol because it touted a "cure". As far as I know there isn't a cure for POTS and I don't see one coming anytime soon. The reason I believe this is because to have one "cure" there has to be one "cause". We all know there are multiple causes of POTS to develop. I started it because 1.)Elizabeth at potsrecovery.com was able to go back to work and live normally 2.) Erina posted a video on youtube and she is better and lives a perfectly normal life with her children 3.)Handmadebybunny on this forum claimed she was "almost" normal after 8 weeks 4.) Erina's friend Donna had the same success 5.) Drugs made me worse and I didn't want to take them anyway 6.) The body is designed to move, it is natural 7.) I had no other options and nothing to lose

I guess I am looking more for the restoration of my life. If my heartrate when I stand is still not completely normal at the end of this and I am not "cured" in a medical/scientific way, but I can take my daughter to the park and go to dinner with my husband. Go on vacation and take a shower standing instead of sitting, then it was still worth it in the end.

[firewatcher]

OK, I confess, I read other POTS sites and blogs.

In one of these blogs, one that is very PRO-Dr. Levine, I found an interesting post or two: over the holidays, this person stopped exercising regularly...and went right back to SQUARE ONE! This is not my idea of a cure. Even Dr. Levine says that this a permanent life-style change that must be aggressively maintained to avoid relapse. This is a treatment, a successful one for certain groups of POTS patients, but only a treatment. I wonder what happens in the long-term with the extra blood volume and salt and its effects on the heart...I also wonder what happens when or if these patients become unable to exercise.

I do exercise, I am better...I am NOT cured (unless you take the other definition of what all this salt does to a ham )

cure:

noun: Restoration to a usual state of health. To heal, restore to health.

McGraw-Hill Concise Dictionary of Modern Medicine. © 2002 by The McGraw-Hill Companies, Inc.

[Noreen]

I do exercise, I am better...I am NOT cured (unless you take the other definition of what all this salt does to a ham )

Eureka! We are all 'cured'!

LOL

[songcanary]

No need to apologize for your rant, Lovebug. I loved it. There are a few doctors that I would like to quote you word for word right in their faces!!!

[Sarah4444]

Is there any way to see a copy or description of Dr. Levine's exercise regimen?

[TXPOTS]

I have some residual POTS symptoms, but after 14 months of exercise, I've been able to stop my other POTS medications (with the exception of one daily tablet of DDAVP). My heart rate and blood pressure are normal when up and about. I function close to 80% capacity. Pretty amazing when I was bedridden for a year. I was not part of Dr. Levine's protocol. I did my own thing after guidance from another POTS cardiologist. I have been a lifelong athlete and was very fit when I first got POTS, so I was skeptical, but ecstatic that I was cleared to exercise. This is just ME, but it took me more exercise and a longer time frame than the patients in Dr. Levine's study. I saw Dr. Levine for a second opinion in January. My blood volume is "like an athlete's" and my catecholamines are normal. I wish I were "cured", but this is good enough for now. I seem to be moving slowly in the right direction. Exercise is like brushing my teeth. I do it every day, no matter what.

[Ashelton80]

That is incredible TXPOTS! I wish I could be as disciplined as I find myself still taking 2-3 days off and I can tell right now that it is to many. Congratulations on getting off your meds!

[TXPOTS]

That is incredible TXPOTS! I wish I could be as disciplined as I find myself still taking 2-3 days off and I can tell right now that it is to many. Congratulations on getting off your meds!

Thank you. I have to confess that I'm one of these mutants who enjoy exercise.

[Victoria]

Hmmmmmm. I have a very small heart.

[firewatcher]

"I have some residual POTS symptoms, but after 14 months of exercise, I've been able to stop my other POTS medications (with the exception of one daily tablet of DDAVP)...My blood volume is "like an athlete's" and my catecholamines are normal."

TXPOTS,

Why are you still on the dDAVP if you are hypervolemic? I am curious why your docs would have you stay on that med.???

[futurehope]

My opinion.....

I'm not cured. I'm more functional.

Someone in a fitness center once said to me, "You brush your teeth every day. I look at exercise the same way. I need to do it." I tend to see exercise that way, as highly necessary, but....

As for me personally, I will not exercise every day. I take Sat and Sun off. And I also noticed that having POTS, I can regress or fall back to "square one" more easily than before.

And, I have bad days and I have good days, If I'm noticing my heartrate is too high for the same exercise as I've done before, I'll back off.

But, mentally, the idea of striving for something, striving for improvement, is very rewarding for me. It might take me longer. I may never be normal. Heck, I may be hurting myself (I noticed my knees cannot take certain things), but nobody is going to say to me "she didn't try". My motto "I'm not dead yet, so I'm going to keep on pluggin' away."

Honestly folks, if you and your doctor decide it is okay, why not start with exercise that are done on the floor, to minimize the vertical component? Anyhow, I hope I did not anger anyone here who is severely ill. I would not expect someone in very poor health to suddenly act normally and begin an exercise program. You do have to be able to eat and obtain nourishment and hydration, for starters.

[Birdlady]

I haven't been on here for weeks, but I wanted to sign in to say that I agree 100% with what Todd was saying throughout this thread. Dr. Levine needs to revise his study and take out the word cured. It is absolutely ridiculous to even think that he's cured these people of POTS. Over the years I have done a lot of non-traditional means to find a cure for myself and I have yet to really find anything that has put a dent into my heart rate increases. The only thing that fixes me is staying as cold as possible...haha. I'm still working at it and I have crossed off a lot of things on the list.

For me exercise is really nearly impossible because of my severe heat intolerance. How can you raise your heart rate without also raising your body temperature? As soon as I get warm, it does not matter if I'm lying down, sitting, standing, swimming or in a frigid cold room, I become symptomatic. I have a recumbent bike and my heart will go from 70 resting to 140 just because I am getting warm. It has nothing to do with actual cardic output. Perhaps someone can explain to me, how exercise is any different compared to when we are just standing in tachycardia. Surely while we are tachying away at 150bpm, that is a type of exercise for our bodies? lol

Anyway I have nothing more to add to this, but I think Dr. Levine is pretty out there for thinking he's cured POTS.