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My CH Story (Read 2708 times)
queenofpain
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Bend, Oregon
Gender: female
My CH Story
Apr 28th, 2009 at 6:43pm
 
Hi, My name is Adele.  I have had CH for over 25 years.  3 years ago i met an incredible Dr. that actually took the time to research my symptoms and correctly diagnose CH. I have episodes that last 6-8 weeks, 3-6 times a day, of course when I am most relaxed and or sleeping.  Each time the Demon and I meet this is kind of how it looks: Awakening from a dead sleep as the demon attacks my left eye, I blindly reach for the Excedrin and O2 mask.  then begins the CH dance,left hand clutched to my face holding the mask for dear life, right arm over and across my head pressing the left temple, dancing, hoping, rocking and singing(moaning) for the next 5-10 minutes (which seems like hours) until the o2 has won the battle and i collapse back on the bed until the demon and I meet again., All done, of course, naked! Sound like fun? F-NO!
ShockedThe pain is so intense i have yet to find words to describe it, i would rather give birth.
During this devilish ritual, my poor husband watches helplessly from the our bed. he also dreading our next encounter.
I am glad to have found this site, I am tired of talking to people who have no earthly idea why I am out of commission. I have only briefly looked at the site but already feel the love! Thanks!
Speaking of that i have not read much about the FOG that accompanies this.  The FOG never seems to go away.  I hate it almost as much as the pain. Brain fog, no emotion, exhaustion, the constant feeling of pressure on the left side of my head, and of course the runny nose that never stops!
Any suggestions on lifting the fog?
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AussieBrian
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CH - It's all in your
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Posts: 3851
Cairns, Qld, Australia
Gender: male
Re: My CH Story
Reply #1 - Apr 28th, 2009 at 6:59pm
 
G'day Adele, and welcome to the last circus in the world to perform without a net. Can't help you with lifting the fog & mist but I'll drink a beer for you anyway. (You can pay me for it later.)

Cheers from down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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ClusterChuck
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The BEAST rises again,
and again, and again,
and .


Posts: 5394
Greenville, North Carolina
Gender: male
Re: My CH Story
Reply #2 - Apr 28th, 2009 at 9:38pm
 
Welcome to the nut house family!  Sorry you have to be here, but seeing as you have the need, I am so glad you found us!

Don't let Brian scare you ... he is relatively harmless.  They let him out of the "home" for an hour or so every day.  Soon, they should have him back in that VERY long sleeved coat, that fastens in the back.   Wink Smiley

I am glad to hear that you have the oxygen as an abortive.  It is the one thing that tries to bring most of us back to the land of sane society (It DOESN'T do it for most, as I am the only sane one here ...)

I did not see you mention anything about preventative medications.  Are you presently taking anything to prevent them from even happening?  Maybe if you found the right medication or cocktail of meds, it would remove that fog.

Another suggestion would be to try to chug one of those energy drinks (as long as you can find one that the taste does not make you gag).  Check the ingredients and make sure that the drink has caffeine and at least 1000mg of Taurine in it.

At the moment, I can't think of another trick ... I will post again, if I think of anything else.  I am sure others will pop in and give you their suggestions too!

Good luck, Adele, and let us know how you are making out.

Chuck
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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
ClusterChuck  
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
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Re: My CH Story
Reply #3 - Apr 29th, 2009 at 8:06am
 
Agree; need to talk to your doc about a preventive med. You are getting incomplete treatment otherwise.
---------

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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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Bob Johnson
 
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queenofpain
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Bend, Oregon
Gender: female
Re: My CH Story
Reply #4 - Apr 29th, 2009 at 8:22pm
 
OK so tell me any success stories of preventative meds?  I am a nurse and would prefer to stay away from most of these meds, myself, unless of course it would make a remarkable difference Huh
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: My CH Story
Reply #5 - Apr 29th, 2009 at 9:09pm
 
Some stats within this protocol.
=======
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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Bob Johnson
 
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Guiseppi
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Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: My CH Story
Reply #6 - Apr 29th, 2009 at 11:13pm
 
Welcome to the board...and what they all said!! If I had to rely primarily on my abortives I'd be like you getting hit about 2X a day. When my cycle starts I go on 1200 mg a day of lithium. Takes about 2 weeks for it to become effective...I do a prednisone taper to get me over that hump. Once the lithium gets going it'll block 70-80% of my attacks, I rely primarily on oxygen for the attacks that break through.

Do read the info Bob gave you and look into prevents.....they've dramatically improved quality of life for me.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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BarbaraD
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Douglasville, TX
Gender: female
Re: My CH Story
Reply #7 - Apr 30th, 2009 at 6:47am
 
What they said...

Melatonin at night - 6-18mg before bedtime. It will probably knock out those night hits (don't get upset if it doesn't work immediately -- took about two weeks to start working for me, but I don't go to bed without it now and very SELDOM have a night hit).

Red Bull or another energy drink at the start of a hit will sometimes knock it out of the ball park.

And WATCH OUT for the Excedrin. I KNOW they work BUT they WILL cause rebounds and the REBOUNDS hurt worse than the regular CH. I had to learn that one the hard way.

A good prevent will help a lot (with a pred taper while it gets in your system).

And be sure you're using the O2 properly (check out the Oxygen info on the left). That works great for about 70% of us.

Hope you kick this cycle real quick.

Hugs BD Kiss
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What don't kill ya, Makes ya stronger!
 
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queenofpain
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Posts: 38
Bend, Oregon
Gender: female
Re: My CH Story
Reply #8 - Apr 30th, 2009 at 8:47am
 
Wow! Lots of great info.  Thanks all of you! Roll Eyes
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