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hanging on for dear life

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new
Jan 17^th, 2012 at 10:20pm

I am a 38 year old who has had these life changing headaches since at least 3 years old.
Been to Michigan headache clinic where they finally diagnosed with clusters.
No one understands until you have had them or love someone with them.
Just got back from the ER screaming for someone to please help me, bruises on my legs from hitting them against the bed they made me sit on because of my pain straight for 6 hours made me unable to stand. Laying down not an option. Begging my Mommy (never usually call her that just Mom) to kill me. My blood pressure usually very low 90/65 was 140/over something. I just wanted to die.

From what i read vomiting is not common with these but I vomit so bad I am losing all my teeth. I have a ring around my right eye (copper) my pain specialist says is common with clusters haven't seen much on that.
i have had these since I was at least 3 and would hit my head against the wall for the 1/2 second of relief.

I don't remember the last time I wasn't in pain.

Guilt of not being a good mom or wife. Strong faith that lets me endure (knowing its not forever). My Mom said it would be easier for her if it was terminal because at least there would be an end to my suffering.

Great to find a place where people know where you are coming from. Ive tried oxygen therapy, beta blockers, calcium blockers, topamax ect.... I have been on disability since 2005 tried herbal, acupuncture, chiropractic, conventional. Have had 3 neurologists tell me there is nothing else they can think of I would just have to live with it.
I will continue the fight especially since my 8 year old daughter has had 3 recently.
Thanks for listening!

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Bob Johnson

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free." -Epictetus

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Re: new
Reply #1 - Jan 18^th, 2012 at 11:19am

I know that this suggestion is a real stretch but given your efforts to find good care, you might contact your present/latest headache doc and pitch this idea.

Recently, we have seen a number of reports about other medical issues which mimic Cluster to a tee. Suggest you print out this reference and ask your doc to consider your situation from this perspective.
==

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Bob Johnson

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: new Reply #2 - Jan 18^th, 2012 at 11:58am clusterbusters.com It's changing people's lives.
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wimsey1

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Re: new
Reply #3 - Jan 19^th, 2012 at 7:52am

Ok, here's the good news: you have several things working in your favor-you have a diagnosis, you have a strong faith, you have support. The bad news is we do not hear that you have been given the weapons you need to combat CHs. You mention O2, but most people who tell us it didn't work were given the wrong flow rate, with the wrong mask, and the wrong info on how we need to use O2. Perhaps that was true of you as well. You don't mention preventatives, like verapamil, or lithium. Or if you were given them, perhaps like the O2, you weren't given the Rx at a level effective for CHs. We see a lot of that. What about imitrex injections? Or migranal spray? Melatonin? Energy drinks? Have you looked into clusterbusters? There's a bunch of stuff you may have just omitted but then again, perhaps you haven't yet had the opportunity to try them. Please let us know if any of the above has been tried, at effective levels, and what effect they had. don't give up. God bless. lance

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Skyhawk5

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Re: new
Reply #4 - Jan 24^th, 2012 at 8:42pm

Welcome to CH.com,

Was the Michigan Headache clinic MHNI?? I live within 15 min of there. If you've been diagnosed with CH and any Neuro said there's nothing else they can do, they no very little to nothing about CH.

Educating yourself about CH is in your own best interest. It's quite a rare headache illness and most Doctors including Neuro's and some specialists know little about it and modern treatments.

CH.com and OUCH has lots of info to help educate us. If you would like to speak to someone in person, let me know and I'll PM (personal message) you my Ph#.

Don

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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