Back From The Cleveland Clinic Chronic Pain Program:

[LindaJoy]

Again, thank you, everyone, for your replies, and especially your concern. I honestly didn't post to "trash" the program; I posted to ask about my continuing symptoms. I guess my frustration with what I'd been through and witnessed did come out.

I think you're all right, though, and I know the program has been reported, but to no avail, which is not surprising. I guess I, like most of us here, have been through so very much with this illness that I'm used to being treated like a second class citizen by most in the medical community, world renowned clinic or not, and I figured this program was no exception. I'm not making excuses, just telling how I've dealt with it. I know that's not acceptible, but I've just learned to take away from things the positives that are helpful to me and leave the rest go. Many, many people left the program after only a few days. I felt I had nowhere else to go, so I stayed. Pretty sad, I know.

Okay, enough of that. Again, thank you all. I'm now weaning off of my Cardizem CD (see other post for details), then I'll be med free, which honestly terrifies me. I do have a new doctor who seems very, very on the ball, compassionate and thorough. I really, really hope this relationship works out!

Take care everyone.

LindaJoy

[MotleyLori]

LindaJoy,

I sure hope your new doctor is a "keeper". Seems like us trying to find good doctors for our condition is like trying to find a nice guy by going on "blind dates". Some of them you just realize in the first few minutes are losers!

Lori

[dizzy]

I am sorry to hear about your bad experience.

I was referred to the CC Pain clinic also several years ago, but chose not to go.

Several things just did not seem right to me. The Dr that referred me.....said that everytime they say "pain" substitute "dizzy" in its place.......as I do not have pain but extreme disorienting dizziness. Knowing that my dizziness and passing out is hereditary....and also diagnosed as having low blood volume...I didn't see how that would be much help.

I was told I would live in a dorm style room and go to the clinic each day. Being 5 hours from my home and family I would be alone for the 3 weeks. At the time, my dizziness and syncope was so bad I couldn't have walked across the CC campus alone......let alone crossed the street in the busy traffic. I also had a 9 month old child who they expected me to leave for 3 weeks. I was made to feel very guilty for not obeying the Dr's orders, but I just didn't see how I could do it. I also had my doubts that my insurance would pay for a pain clinic to treat dizziness.

I would like to hear if anyone has had a positive experience in this program for POTS.