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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> My husband's CH
        
(Message started by: puppylove41 on Nov 12^th, 2007, 12:05pm)

Title: My husband's CH
Post by puppylove41 on Nov 12^th, 2007, 12:05pm

This is really an update this past summer I was asking about CHs for my husband. His neuro told us a few months ago that he is waving the white flag he doesn't know what is going on. We went to another neuro and he is a headache specialist well he told us that my husband's case is highly unusual that his right eye shuts all the way with the headache. He is forceing him in to the CH catogory because the headaches sound like them but still not sure, he put on yet another med said it was use before Topomax which we have tried with no helpl. Was on 120mg a week later 240 now he said maybe 360 but still not sure because of the unusual case. He is never with out a pulseing headache and then the little man in his head come visiting with an ice pick. When this is going on all he does is sleep, it looks like all the energ is drained out of him. Out of 30 day he has been down about 20 of them. He even lost his job over this. His boss said he is a lyability he is a mach. maintance man. He never missed a day unless it was to see the Dr. even then he was on night work in summer so Dr. in daytime work at night and now out of work and still not sure what is going on. I don't know what else to do for him, I am the one who found all the Dr.s he has seen and believe me there are lots. This has been going on since 7/05 Thanks for the site it help me help him, he does not get on the computer that is why I write on here. Sorry for the spelling

Title: Re: My husband's CH
Post by Ray on Nov 12^th, 2007, 6:07pm

Dear PuppyLove:

Your DH (Dear Husband) needs to see someone, most likely, at an inpatient Headache Facility, and the OUCH website lists patient preferred doctors.

From what you describe, with the pounding headaches, it has some features like migraine too.

There is some hope for some relief with DHE IV therapy, if your hubby does NOT have any heart trouble.

Please seek out the means to get him some help at a site that can bring experts to bear on his headaches.

Let us know what happens,

With best wishes,

Ray

Title: Re: My husband's CH
Post by puppylove41 on Nov 12^th, 2007, 6:42pm

Thank you he has been to about 19 doc. the last one is from Jefferson Hospital he is a headache specialist. Since his boss let him go we have no insurance right now. I am still looking in to some stuff for him tho.

Title: Re: My husband's CH
Post by RichardN on Nov 12^th, 2007, 9:59pm

Would the other med (that he's been tapering up) Verapamil? If so, that's one of the first-line preventive meds for CH . . . it worked for me, along with 02 to abort the attacks. Many use much higher dosages, often in combination with other meds, such as Lithium.

" . . when this is going on all he does is sleep." . . . not a normal cluster trait . . . we tend to fear sleep and it's not possible to sleep past a Kip 4-5 (see "the kip scale" . . . link on left)

Do take the "cluster quiz" and let us know how he does.

We have several here who have CH . . . PLUS migraines or other type headaches which of course makes correct diagnosis even more difficult.

The real headache "pros" will be along soon to see if they can get you pointed in the right direction . . . read, read, read. provide as much info as you can re his attacks, meds that have/haven't worked.

"highly unusual that his right eye shuts all the way with the headache." This doc is NOT familiar with CH. I am right-side CHer . . . which means that my eye hurts/tears/closes and sinuses on right side of my face hurt . . . and the bad ones include the teeth on that side . . . . all traceable to the trigeminal nerve which also makes the neck sore on the right side. Sound familiar?

Be Safe, PFDANs

Richard