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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> need to find a Dr. 
        
(Message started by: eric47 on Apr 23^rd, 2006, 7:51pm)

Title: need to find a Dr.
Post by eric47 on Apr 23^rd, 2006, 7:51pm

In reading through the profiles I seen a few suffers who live in the Huntington Wv. area. I was wondering who they found to help them. I've got an apointment with a nero in Oct. and thats with the University of Ky. I'm just getting over a four month cycle, but I'm being shadowed on a daily basis. I'm scared he's comming back and I don't have nothing for him. Right now I'm fighting him off with red bull and coffee. It seems to work.

Title: Re: need to find a Dr.
Post by Kris_in_SJ on Apr 23^rd, 2006, 8:10pm

Hi Eric and welcome.

The OUCH website link to your left includes a listing of recommended neurologists and docs that are good with cluster headaches. Perhaps you can find one near you.

Afraid that's the best I can offer. I gave up my neuro in favor of my GP, who reads everything I give him and is willing to work with me. He is now becoming a cluster expert, though I'm sure that wasn't his intention.

Good luck!

Kris

Title: Re: need to find a Dr.
Post by eric47 on Apr 23^rd, 2006, 9:29pm

thank you kris allready tried that site. We just got alot of quacks for dr's around here. The three I've seen knew nothing to help. My TMJ Dr. witnessed an attact in his office while I was there to receive a cortizone injection to my jaw. I think there was high level of stress for me that day.He's the one who made my oct. appt. with a nero. Oct. just seems so far off.

Title: Re: need to find a Dr.
Post by RichardN on Apr 23^rd, 2006, 10:45pm

Copy the 02 info and TAKE IT BACK TO YOUR DOC! I believe the "brightok" link is recognized by the med profession and 02 as abortive CAN BE effective.

If he witnessed an attack and won't at least give you 02 to try during the six months you have to wait for a neuro . . . . I'd be looking for a new doc . . . and be VERY LOUD about leaving . . . . inexcusable!

I DO hope you get some relief soon. So sorry you're going through this.

Be Safe, PFDANs

Richard

Title: Re: need to find a Dr.
Post by E-Double on Apr 23^rd, 2006, 10:49pm

If you can find a doctor who is willing to read legitimate research than you will be ok.
Present him/her with some of the following:
on 04/14/06 at 19:50:38, E-Double wrote:

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2005;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: need to find a Dr.
Post by Bob_Johnson on Apr 24^th, 2006, 8:00am

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/ On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: need to find a Dr.
Post by Barry_T_Coles on Apr 24^th, 2006, 10:00am

Hi Eric & welcome
This sounds just so very much like me and what happened to me, my Doc saw me going through a hit and only recognized what was happening because she had been researching for herself “migraine / headache sites”, because her children suffer badly from them & she came across this site and recognized the malady we/you I have.

OK hopefully your Doc is putting you in touch with a Nuro who knows his/her stuff but what I did is go armed with copies of all the info you can gleam from this and the OUCH site in a nice neat folder, it’s a shock tactic that from my experience makes them sit up & look around, the look from them is that you may just know more about the problem than they do & they don’t wish to let you know you are smarter than them.

Verse yourself as best you can with what you can read here & from the answers you get from your questions placed here, always remember that any question not asked is a question not answered and no question to us is a strange one, we have all done it before because we quite simply didn’t know what was going on in our heads.
I really do hope that your Doc has pointed you in the right direction and as for the time it takes to get to see a Nuro; really don’t be surprised ( disappointing I know ) but I had to wait nearly 8 months before I saw my Nuro to confirm what I already knew.

Read, read & read again my friend because the more familiar you become with this nasty little shit the better equipped you become to handle it and you are among people who care.

Kind Regards
Barry

Title: Re: need to find a Dr.
Post by sarahmom on Apr 24^th, 2006, 10:44pm

Hi Eric! Welcome to the boards (well, not really...but you know what I mean ;;D ). I live right outside of Charleston. I have went to almost 30 different nuero's w/in the greater Charleston/Huntington Area. I finally (after a couple of years) ended up at the Cleveland Clinic. Changed my quality of life forever!!! I have yet to hear of a good nuero in this area that can help. They just are not 'informed' when it comes to clusterheads. I do not know anything about Univ. K drs, but I absolutely LOVE mine, and his staff!! Definately worth the drive for me to Cleveland! Send me a message if you want to chat!

Title: Re: need to find a Dr.
Post by GuitarBill on Apr 28^th, 2006, 12:44am

Welcome to the boards! As far as finding a doctor...I must say please be very cautious and make the best decision. To me, finding the right Doctor is like finding the right remedy. The doctors I've seen in the past didn't care in the slightest bit about CH. One of them even wanted to send me to a mental hospital (that's no lie). Alot of them never care at all. I've had very bad experiences with these "so called doctors" who only care about paychecks. Look around and find the one best suited for you. If they tell you nothing's wrong (which has happened all the time for me) that's usually a good sign to leave. I really don't want to sound (sexist?) but my current doctor is female and she has helped me more than any other...and she is very compassionate and concerned about my CH. (Most male doctors I've been to didn't care and told me it was in my head) Yeah it's in my head literally, a**hole...
Anyways...good luck and keep us informed...