A Second Look At Levine

[Trach]

Firewatcher,

I was under the impression Levine required his patients to go off of all meds in his study. Do you know if that is still true?

The reason I am asking is that my older daughter's pediatric neurologist called me last year. Her doctor had referred a POTS patient to Levine's program. The patient went from wheelchair bound to fully recovered. My daughter's neurologist wanted me to consider Dr. Levine's program for my younger daughter. I told the doctor I had looked into Dr. Levine's program, but I did not pursue because my daughter would have to go off her meds. Due to her migraines and insomnia, my daughter refused to try any program where she had to go off her meds.

A year later my daughter eventually got better and is on the high school swim team and works out approximately 2 hours/day 5 days per week. Is her POTS cured? No. Is she better? Yes. She still struggles with fatigue and is exhausted by the end of the week. I do not know if she will ever be "cured".

[firewatcher]

Only research patients were required to go off all meds. TXPOTS saw Dr. Levine and had an approach tailored to her needs.

Good luck with your daughter!

I just wanted to pop in and give a quick update. I apologize that I don't frequent the boards anymore. I am still traumatized by my experience with POTS. I find it difficult to read posts that hit so close to home.

I have fully recovered from POTS. I even was sick with the flu this summer and was in bed for a week. I'll be getting my flu shot for now on! No relapses post flu. I guess I have been "POTS free" for slightly less than a year. 11 months? I went to Disney World in May. I am back to my regular life and feel healthier and stronger than ever. I can even stand (yes STAND, not sit leaning back in a chair) on the sidelines and watch the kids play soccer.

I still exercise daily, as I did prior to getting POTS.

I feel extremely lucky that I have recovered from POTS. I probably had the "POTS flavor" that people may recover from over time. I have no clue what caused my POTS.

I noticed a few messages where people asked me what I did to recover. It's obviously hard to exercise when you can't even sit up in bed. The volume expansion (Florinef and DDAVP) prescribed by a compassionate endocrinologist helped me get back on my feet. I started gradually exercising and then I turned into an exercise demon. I was really ticked off that I still had POTS when I got up to jogging 8 miles and day and then jumping on the stair master for an hour. At that point, I saw Dr. Levine who confirmed my blood volume was "high", as is normal with athletes. I was able to get off of the Florinef and DDAVP, and then the POTS disappeared.

I have no idea if the overly aggressive exercise regimen has any benefit over a more reasonable regimen??? I would venture to say most doctors would advise against this route? The other thing I did differently was that I FORCED myself up. I was in tears and pain everyday for a good year. I would not allow myself to lye in bed unless I was sleeping. I had a recliner and then pushed myself to sit in a regular high back chair. I forced myself to do housework and garden, etc... I started accompanying my family everywhere, even if I felt bad. I would say that I took a very aggressive approach to recovery, not necessarily a gentle approach. It's almost as if I had to retrain my body to be upright again (if that makes any sense).

Someone asked if I experienced post-exertional fatigue. YES! especially in the beginning, but it seemed to get better over time

Someone asked me if I did tilt training. No. I tried and found it didn't seem to help.

Once I accepted that I hd a chronic condition I started to improve. Perhaps the old saying is true. What we resist persists.

Best wishes to all. I just wanted to give a little hope. It is possible to improve and even recover.

[Trach]

Thanks for the info - I forgot about TXPOTS post.

[ramakentesh]

Have you emailed Dr Levine? Interesting character.

Did a four km walk last night - even went for a run after saline (gees that hurt) but funnily enough I havent died yet

[martiz]

I have tried the Levine protocol and was better while I was on it but life got in the way.

I was never able to start at Day 1, Month 1 so they sent me a Pre Month 1, 2, & 3.

I am restarting Day 1 of Pre Month 1 (again!).

I see Dr. Levine for the first time in mid-March. Not too thrilled as I hear his bedside manner is lacking. That "grinch" thing is upsetting. I probably do fall into the deconditioned though as I was ill before the POTS got really bad with ME/CFIDS and Fibro.

I think working your way to whatever level you can without heading for a relapse is wise.

[Trach]

I have not emailed Levine, but since I just found out I have EDS 3 I am 99% sure EDS 3 is the cause of my daughter's POTS. So now it makes sense that a combination of swimming, weights, and running 1.5 -2.5 hours per day during the week improved her POTS but has not "cured" her. She still has flares.