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New to it all. (Read 1534 times)
LindaS
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New to it all.
Dec 25th, 2009 at 11:00pm
 
Hi all.  I am Linda. I was just recently diagnosed with CH.  It started 3 weeks ago and is still going strong. It's only during the day, only gets to about a KIP 5, and usually lasts about 30-60 minutes. My doc started me on Methylprednisolone, which lessened the severity for the first couple days but now it's back full bore.  I go back to my doc on Monday and am wondering what I should ask, what treatments I should look into, and any other advice.  Thanks in advance.
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bejeeber
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Re: New to it all.
Reply #1 - Dec 26th, 2009 at 2:08am
 
Hey Linda,

Nothing like some nifty cluster headaches to brighten up the 'ol holiday season huh?  Sad

Sorry this had to happen to you, but GLAD that you've gotten on the case so early in the game and that you definitely came to the right place here for research, asking questions of CH vets.

The first bit of advice I'm going to give you is something that is practically unanimous 'round here:

Oxygen.

If the links show up on the left side of your web page view here, there's one called "oxygen info". It details the newer, more effective way to use O2 to kill CH hits.

2nd: Don't let your doc sluff some imitrex PILLS off on you. Injections are the most effective (very effective!) form for aborting CH attacks, followed by nasal inhaler. With your Kip 5s, I'm wildy guessing that the inhaler might actually work for you at this stage of the game.

3rd: With very rare exception doctors are total a-holes when it comes to CH - they don't know jack about it, won't get off their rich, lazy butts to learn anything about it, and will prescribe all kinds of stupid, wrong stuff. You're going to have to be the expert in this case.

4th: DON'T DRINK ANY ALCOHOL WHEN IN CYCLE!! For most of us that will guarantee one reall crusher of a hit.

And thats just for starters.  Cheesy

Its actually possible in many cases to get these CHs reasonably under control if you're well informed, so lets make you a textbook case of beating back those clusters and showing THEM who's boss.  Smiley




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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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LindaS
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Re: New to it all.
Reply #2 - Dec 26th, 2009 at 12:15pm
 
Thank you for all the info.  Smiley  I will definately be asking about O2 and imitrex at my next appointment.  I am still researching other treatment methods besides the predisone, it gave me an ulser a few years back and seems to be doing the same thing this time.   
Between hits I am trying to gather as much info as I can to bring to the doc, mine is very good about doing what I ask if it is reasonable.
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Jeannie
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Re: New to it all.
Reply #3 - Dec 26th, 2009 at 1:10pm
 
Verapamil helps many around here as a prevent.   

Jeannie
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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney
 
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LindaS
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Re: New to it all.
Reply #4 - Dec 26th, 2009 at 3:09pm
 
How exactly does a prevent work?  Is it something you take all the time, when the cluster starts, or what?
Sorry for so many questions but I am totally new to this and would like to avoid as much as possible, if you know what I mean.
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Dallas Denny 62
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Re: New to it all.
Reply #5 - Dec 26th, 2009 at 4:47pm
 
Check your PM's Linda
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I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!
 
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Bob Johnson
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Re: New to it all.
Reply #6 - Dec 26th, 2009 at 5:30pm
 
Throw yourself into a fast learning curve before you start negiotating specific treatments. I hope that you have settled with a doc who has experience treating complex headache disorders: if not, and you have the option, get back for suggestions on how to find such a person.

First, educate yourself. Following a good first overview. Then explore the buttons (left) starting with the OUCH site and the many internal links you will find. As you read, question will develop and then it's time to get an active conversation  going here.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
========
These are the kinds of meds which a good doc will be discussing with you:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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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« Last Edit: Dec 26th, 2009 at 5:31pm by Bob Johnson »  

Bob Johnson
 
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bejeeber
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Re: New to it all.
Reply #7 - Dec 26th, 2009 at 9:49pm
 
LindaS wrote on Dec 26th, 2009 at 3:09pm:
How exactly does a prevent work?  Is it something you take all the time, when the cluster starts, or what?
.


An episodic sufferer such as myself (and yourself) wouldn't take a preventative year round - just during an episode.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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LindaS
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Re: New to it all.
Reply #8 - Dec 26th, 2009 at 10:41pm
 
Thanks. 
I feel so fortunate that I found this site in the beginning of my research and that everyone is so nice and I didn't have to waste time on things that don't work.  Thank you all for being here and helping newbies like me.
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