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Cluster Headache Help and Support >> Cluster Headache Specific >> 29 yrs and again a Doctor battle.
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Message started by Skyhawk5 on Apr 5th, 2017 at 10:44pm

Title: 29 yrs and again a Doctor battle.
Post by Skyhawk5 on Apr 5th, 2017 at 10:44pm
After having a very wonderful Neuro for 18 yrs. I now have one that only gives appts once a year. I'm used to being seen every 2 weeks, in bad times. The new Doc seemed quite dedicated in private practice. He is now at the local Univ. Hosp and things have changed.

I think he resents that I go to Cluster Headache conferences and conventions to know all I can about CH and treatments. He was a recommended CH Doc on the "OUCH" Doc list. (site closed)

This Doc seems more concerned with my health than my life. What good is health while I'm robbed of my life, in pain, little sleep to the point of mental impairment?

He cut my injection Rx in half. I've been averaging 8-10 wake up hits with a couple more daytime. Too bad I can't cut those in half.

Forgive my vent, I know you understand.

Don


Title: Re: 29 yrs and again a Doctor battle.
Post by BobG on Apr 6th, 2017 at 11:25am
Vent away , Don. We all understand your frustration.

Title: Re: 29 yrs and again a Doctor battle.
Post by Skyhawk5 on Apr 6th, 2017 at 10:22pm
Thanks Bob. One big differnce between these two Neuro's is the compassionate one lost a patient to CH. The guy opted for a 'nerve ablation' that killed the whole side of his face, eye lid and mouth.

Soon after this his CH switched sides. He didn't survive the cycle..

Guess I'm lucky when I think of cases like that. Blessings to all of you.

Don

Title: Re: 29 yrs and again a Doctor battle.
Post by Traveller on Apr 8th, 2017 at 9:07am
You might give some thought to a Sleep Study since you are getting hit so hard at night.  A few of us here have found substantial relief after being treated for Sleep Apnea.  In my own case I am 100% free now for two years after being put on a CPAP machine.  Sleep Apnea can dramatically lower blood Oxygen levels and we all know of the link between Oxygen and CH.  Best of luck to you.  PM if you have any questions.

Title: Re: 29 yrs and again a Doctor battle.
Post by Skyhawk5 on Apr 9th, 2017 at 8:51pm
My sleep study showed no Apnea. But thanks, it is a noted problem worth repeating. A lot of us have it..

After re-reading my posts, it reminded me how many times I've read other posts like it. As we age and things begin to break and go wrong we may lose that Rx for Imitrex or others because we now have Heart conditions. Or like me PAD, artery disease.

Like all of you, I will take what the Doc gives me, and make it work.

Don

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