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Cluster Headache Help and Support >> Getting to Know Ya >> Thanks for these tips
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Message started by jrock on Aug 27th, 2009 at 9:29am

Title: Thanks for these tips
Post by jrock on Aug 27th, 2009 at 9:29am
Hi all,  this is my 1st time on the board.  My girlfriend introduced me to the term "Cluster Headaches" just the other day. 

She was trying to figure out what is wrong with me.  I've been a sufferer for about 17 years.  For the last 13 years I have been taking Fioricite.  My doctor thinks they are cause by stress/diet.  When I found this site, it was like reading about myself.

I can relate to the terms like "the demon inside".  I taunt him...yell at him to give me all it's got.  The pain is incredible.  When it passes, it's the greatest feeling in the world.  It usually drains me emotionally and physically.

I'm going to read on and decied what to try; Oxygen, pepper spray.  Just to know that others get these things too is a releif.  I thought I was crazy.  Only others who get them can understand.

I'm off to find a new doctor.

Thanks for reading my ramblings,
John

Title: Re: Thanks for these tips
Post by Bob_Johnson on Aug 27th, 2009 at 11:26am
Good decision re. new doc!
Fine article for your learning:

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (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]

Title: Re: Thanks for these tips
Post by Lawrence on Aug 27th, 2009 at 1:39pm
hey dude,
welcome to the party 8-) :o ;D >:( :( :'( :D ;D ;)

Title: Re: Thanks for these tips
Post by Ginger S. on Aug 27th, 2009 at 5:27pm
Welcome to CH  [smiley=headbanger.gif] JRock nice to type/meet you even under the circumstances.

I hope you find a better Doc soon!

PFDAN's to you!  :)

Title: Re: Thanks for these tips
Post by Charlie on Aug 28th, 2009 at 12:46am
Welcome aboard and it's good to meet you but I sorry it has to be because of this horror.


Quote:
When it passes, it's the greatest feeling in the world.  It usually drains me emotionally and physically.


Exactly. When I had mine, they seemed literally drain out of my head very quickly. When it does, you know that you will be able to rejoin the human race. I sort of flopped into my chair and just felt so damned good.

Here is something that worked well for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from my neurologist:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      

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