Dysautonomia (Autonomic Dysfunction) Community
Cleveland Clinic Follow up by phone?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Cleveland Clinic Follow up by phone?

I have another question....

I was evaluated by Dr. Jaeger at Cleveland Clinic in Fall 2009 and have not been back for a follow up visit.  I live 8 hours away and cannot drive that far, so would have to fly and stay in hotel. Has anyone been able to do followup by phone with CC and is it worthwhile??  I am not even sure what med changes I could do anyway.... I am on midodrine and fludrocortisone.  I would not increase my fludrocortisone b/c I now have osteopenia (sp) and I cannot take many other POTS meds b/c of my asthma.....

My local cardiologist has a few POTS patients but has acknowledged or rather "complained" to me repeatedly that it is a "very frustrating" illness for him to treat.  If he thinks POTS is frustrating to treat, he ought to try living with it!  So it is hard for me to get enthused about seeing him  UGH.

On a very positive note, I can now exercise for the first time in ten years! Dr. Jaeger at CC strongly encouraged me to exercise to build up leg muscles in particular. I was very afraid to b/c of many past failed attempts. I started two minutes on an exercise bike going so slowly that the bike did not even register that there was anyone on it.  I increased my speed and time VERY slowly over several months. I am now up to 30-35 minutes on the treadmill and can even use some leg weight machines!  On my worst days, I do not exercise.  It is working out pretty well so far, except for during the very hot days this summer.

Laura

Laura
3 Comments Post a Comment
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875426_tn?1325532016
I'm sorry no one has gotten to/or been able to answer your question as of yet, but I'm glad you are doing so well in the exercise department!
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Avatar_f_tn
Thanks. I met with a trainer and have added some upper body exercises.  Also read that in addition to legs, it is good to increase abdominal muscle strength to help with blood flow.   I am being VERY cautious about beginning these new exercises gradually and really hope I can do this.  No arms above head though, I have learned about that the hard way.
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875426_tn?1325532016
You ain't hummin' as they used to say in the old days- the arms above the head thing- I can relate to that statement!
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