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        New Message Board Archives >> Jul-Sep 2003 >> Help Needed
        
(Message started by: Laura_H on Aug 4^th, 2003, 7:20pm)

Title: Help Needed
Post by Laura_H on Aug 4^th, 2003, 7:20pm

I am a former Cluster Headache sufferer. Yes former. I was one of the first to ever visit this site about 6 or 7 years ago. That was back before we had to register :)After living w/ clusters for 15 years I found this site and received so much help and support. DJ, I can never thank you enough! I've been h/a free for almost 3 years now. But my problem is now my husband's headaches. He had a medical injury that caused his brain to sink and pull a nerve (at least that's what the neurologist guess). Can anyone tell me where I can turn to find THE BEST headache institute or research center or doctors in the country? I will take him anywhere. He has given up and is talking about taking his life. I must do something - but don't know where to find the top doctors in this field. We live in Cleveland and he's been through the pain mgt. group there, but they tell him to learn to live with it. He won't. Please - any help would be soooo appreciated. I'm scared and worried. And I remember how severe headaches can really screw you up. I'll check back often - or please email me. I need help on this. Thank you, Laura H

Title: Re: Help Needed
Post by cootie on Aug 4^th, 2003, 10:03pm

Laura_H......hi..........wow.....your from Cleveland Ohio....were just down from you about 45 minutes in Ohio ! There is a good neuro in Mansfield named Dr. Stofie and not sure I even spelled that name correct but it is close....and he's in the book under neurologists and seems to know his shit....but then....he's the ONLY neuro I ever met that treated Brad.... there's Dr. Marcelo Bigal that's assistant professor of neurology and spoke at the convention this year....he's out of NY.....I have his phone number and card but not sure if that is what your looking for. Albert Einstein College of Medicine sure sounds impressive. He's an awesome doc...Wish I could help you more......leme know if you want that phone number cuz he gave us his card. There is a list of docs or neuro's on this site now that mite help ? Hang in there OK.....Pam that is hopein like hell you get the help you are asking for here

Title: Former?
Post by rumplestiltskin on Aug 5^th, 2003, 2:01am

I'm sorry I do not know of any good head specialists.I wish him a fruitful search and treatment.

Uh.... I'm kinda curious. Ya threw this out like bait.

Quote:

I am a former Cluster Headache sufferer. Yes former.

OK... so how does one become a "former" CHer?
2 or 3 people here are mildly curious to know how.

Wage Peace
den

Title: Re: Help Needed
Post by Laura_H on Aug 5^th, 2003, 6:11am

Cootie (Pam): Thank you for your response! I didn't know about the list of docs on this site, so I will start there. Thanks for your concern. I will forge on to find him relief. Good luck to you. Laura H.

Title: Re: Help Needed
Post by catlind on Aug 5^th, 2003, 6:14am

Laura, contact the Cleveland Clinic. They have some incredibly good neurologists that deal in head trauma as well as vasculitides.

Cat

Title: Re: Help Needed
Post by Laura_H on Aug 5^th, 2003, 6:15am

Rumplestiltskin Den: I said "former" only because I haven't had c/h since 1999. And I used to get them every summer. (Knock on wood). I found after trying so many other things that Verapamil broke my cluster and have been gone since. I'm almost afraid to think or talk about it, ya know? Anyway - I'll keep searchin for relief for my husband and hope the best for all of you. Good luck. Laura H.

Title: Re: Help Needed
Post by Big_Dan on Aug 5^th, 2003, 8:42am

The only place that comes to my mind is the Mayo Clinic...

I've never actually been there... but I've heard good things about them....

It'd be worth a look into..

Pain Free Vibes for your Husband...

-Big Dan

Title: Re: Help Needed
Post by cootie on Aug 5^th, 2003, 9:59am

Laura..I didn't mention the Cleveland Clinic cuz I would imagine if you live in or near Cleveland you would of certainly been there by now.....if not.....like cat said.....check it out. Good luck fer fellow Ohio'n Pam

Title: Re: Help Needed
Post by CJohnson on Aug 5^th, 2003, 10:19am

Hey, Laura. Just barking up trees here, but you didn't, by any chance, change your eating habits during this pain free time did you? Say, for example, going to a higher protein lower carbohydrate diet?

PFDANs
-Curtis

Title: Re: Help Needed
Post by forgetfulnot on Aug 5^th, 2003, 10:26am

Most Doctors in Oklahoma refer people to the Diamond Headache Clinic, Chicago. I've read both good and bad things posted here from time to time. I did a search here and got 12 hits on diamond, here is one of them, http://www.clusterheadaches.com/wwwboard/messages2/101853.html Good luck!

Lee

Title: Re: Help Needed
Post by Laura_H on Aug 5^th, 2003, 11:41am

Thank you everybody for your suggestions. We have already been to the Cleveland Clinic, but went to their Chronic Pain Management Program (30 days every day 6:00am-5:00pm). It was mostly "smoke and mirrors" with biofeedback, deep breathing, etc. They took away all his pain meds. (By then he was addicted). Today we are going to his regular neurologist and I will tell her that he is talking about suicide. I appreciate all your support, guys. You all know how screwed up this can make your life. Thanks.

Title: Re: Help Needed
Post by cootie on Aug 5^th, 2003, 1:29pm

Careful Laura about mention'n the suicide deal..it most definetly depends on yer situation tho......but they have to treat that threat 'differently' from what I have heard and may want to commit him to some sort of theropy for suicide'l pathients and have to stay a while b-4 they'd prescribe more meds. Maybe that'd be a good thing..I don't know so think about it and go accordingly. But YES if he is needing to get theropy and MADE to go and get help for suicidal thoughts then that jus may be your best way to go.......did that make sense ? I'm no expert but have talked to alot of freinds dealin with that with kids and relatives or friends and that's what they informed me of the routine is when they hear SUICIDE. Best of luck to you guys ! PLEASE DO mention suicide if it is a TOTAL risk for his life.....best of luck to you guys. Hope he finds the help he needs and theropy he needs for his sad thoughts. Pam that hopes that made sense ? :-/

Title: Re: Help Needed
Post by Laura_H on Aug 6^th, 2003, 4:25pm

Pam: Boy, oh boy, were you right! Unfortunately I didn't see your last post until just now. By now, they have commited my poor hubby because of what I told them he said! Yesterday we took him to the Neurologist and I told her that he said I'd be better off without him around (because of his headaches) and she sent us to a facility where we thought he was going to be accessed and put on a regular therepy schedule, but instead they just locked him up! We were shocked! So he's in for at least 3 days "involuntarily". Really, he has been depressed due to headaches and because Cleveland Clinic took him off his antidepressant...but I don't think he would kill himself. Anyway, he's been in for about 24 hours now. At first he was really mad, but now he's calmed down and is trying to make the best of the situation. Boy, I wish I'd seen your post earlier! But then again, maybe this is what he needs to get better. Thanks Pam. Laura who hopes this post didn't bore you!

Title: Re: Help Needed
Post by cootie on Aug 6^th, 2003, 4:38pm

Yup that's what happen's when ya mention suicide around hospitals or doc's offices...I guess there supposed ta do that plus protect themselves so nothing happens after the patient leaves the office or where ever and sumone try to blame it on that last visit. But for sum it is good they get them into immidiate theropy otherwise they wouldn't of went....but for sum they really don't mean it when they say the things they do about the suicide but are in need of some attention to there condition NO DOUBT so it is a "shock" when they get locked up .....with some that freaks the entire family out and the patient gets mad at the person who started the entire thing. But ya gotta take it seriously....maybe they will get him back on some meds now and after talking with him know better what he needs and take him more seriously about his pain too. Hopefully they took him off anitidepresants slowly recently....if not that can really mess a person up. Keep us posted how he is doing......am hopein alot of good comes out of all this and he gets the help he needs for his problem and a better doc recommended that can handle his situation better thru these docs! Good luck......Pam that is probly boreing everyone here also.....but NO you aren't at all !!! ;) ;D ;)