Hello. I am the wife of someone who suffers from ch. I have never felt so helpless in all my life. I am desperate to find a good dr and a treatment plan. Please help us because the drs we have seen just try to shove pills down his throat.

Taz,

Has he had an MRI?  Does he have a neurologist? What meds is he on?  Has he been diagnosed? Has the doc given him O2 (mostly our "drug" of choice around here).

Go over to the left and read the medical info - there's about 10 years of info there. Let us know more particulars.....

Hugs BD

Taz,

One of the top centers for treating the cluster headache disorder is the Michigan Headache & Neurological Institute (MHNI), Ann Arbor MI.  The neurologists there see more cluster headache sufferers there in a day than most neurologists see in a life time.

The following link describes an effective strategy in treating cluster headaches.  It is comprised of an abortive therapy, a preventive therapy, and a transitional therapy that's used while waiting for the preventative therapy to become effective.

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There are other excellent centers with experienced neurologists.  
Barbara correctly asked a number of important questions.  A good diagnosis is an important first step.

If your husband has been diagnosed with the cluster headache disorder, try to get him a prescription for oxygen therapy.  It's safe, more effective and less invasive than other abortive medications, and it has none of the difficult side effects of other abortives.

Many of their patients at MHNI were considered intractable cluster headache sufferers until they tried oxygen therapy at 15 liters/minute

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The second link explains why Neurologists at MHNI prescribe oxygen at a flow rate of 15 liters/minute when lower flow rates fail to achieve an abort.

When you get your prescription for oxygen therapy it should read like the following:

"Oxygen therapy with a non-rebreather mask at a flow rate of 12 to 15 liters/minute AS NEEDED FOR CLUSTER HEADACHES."

If you have trouble getting the Rx, take along a printed copy of the MHNI links above.

As you've already discovered, cluster headaches are a family disorder that affects everyone in the family.  There are some excellent links on the left that can help prepare you to better support your husband's disorder.

Hang in there and keep us posted.

V/R, Batch

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  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.
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everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
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Taz,

A whole bunch of us have pills shoved down our throats, except we're the ones who willingly shove them there. For us, they work. Don't discount traditional medical treatment - it literally means the difference between life and death for many.

Perhaps if you'd care to share what pills we're talking about, we might be able to give you some pointers.

Bill

Only 3 things to add, 1, bless your heart for being a supporter. My wife found this board for me and saved my sanity. 2, get your hubby on the board, it's awesome to talk with people you don't have to "explain the pain" to. We really do understand. 3, when you get a chance check out the supporters board. Where all the loved ones of us CH'ers hang out to bitch about what a pain in the butt we can be when we're getting headaches.

Neither of you are alone anymore. ;)

Guiseppi

Taz,
For years I was given all sorts of pills (that didn't work) including Methadone and Morphine. CH is rare and a lot of Drs really don't know about it. Others have already given good advice on finding a doctor.
As Guiseppi said, finding this board and others who understand has been a tremendous help to many of us. You obviously love your husband and want to help ( I have a very loving spouse and supporter as well) but talking to other people that understand the pain is... well I don't even know if I can explain it. I know my husband totally supports me and would do anything to help. But there is a sense of aloneness that comes with the pain of CH, no mater how supportive those around you are. Talking to others who have experienced the beast makes a lot of that lonely feeling go away.
Please encourage him to explore this site. Also, there is a supporter’s tread that you should check out.

~Kris

well your on a good start , your behind your husband, :) my wife just put more insuance on me and hoped i kill myself from the pain :'(

oxygen (must) i go through about 10 to 14 bottles aweek and a big one every two weeks

johnp wrote on Jun 2^nd, 2008 at 9:56pm:

my wife just put more insuance on me and hoped i kill myself from the pain :'(

You are kidding, right?

no not at all  ! she was a winner , you just wouldn,t belive the stuff that woman did to me , trust me i lost everything , but im alive and divorced now .

OMG if I were you I would wish this on my exwife. And all I have are exhusbands.
As for the original topic I am so proud that you are supporting your husband. Couples need to stick together. I wish my boyfriend was a little more computer literate (cant check his email :-?) but he is going to help as much as he can. Poor guy. When I am being evil from this and crying he cries too. And boy do I swear at this headache. I always yell at the headache and never at him no matter how bad I feel. I need him in my corner. But he cringes at my language towards my headache. Guess what they say about preachers daughters are right. If you wanna learn how to swear and get into trouble go find one. Giggle ;D

johnp wrote on Jun 2^nd, 2008 at 9:56pm:

my wife just put more insuance on me and hoped i kill myself from the pain :'(

Wow, the depths some people will slump to.  Glad you got rid of that person in your life.