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Newbie From Aruba (Read 1067 times)
Rick B
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Newbie From Aruba
Feb 12th, 2009 at 10:04am
 
I have finally gotten diagnosed as CH.
I am 53 ,Formerly from W.Ma. my wife and I quit our jobs in '06 and opened a B&B in Aruba supposedly to live our dream life.I entered into this living hell (CH) 3 months after moving here.It started with a 4 month stint and now it is an almost everyday occurrence.Primarily in the evenings and lately awakening me from a dead sleep.I had self diagnosed myself and thought for sure I had sinus headaches but after finally going to the ER and getting an appointment with a Neurologist I have a name for this torture.After telling him I didn't want to be taking drugs for the rest of my life.He has me on Indomethecin 25mg's,told me to take twice a day but I could take up to 150 mg's.I am currently doing 100mg's and still waking up anywhere from 1-4 A.M..
Sorry for such a long winded intro but I wanted to say how happy...relieved I am to have found this site. I have only read a few topics so far but I am sure that I will be reading much,much more.
Again thanks!!!
Rick
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Ellick
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Re: Newbie From Aruba
Reply #1 - Feb 12th, 2009 at 10:11am
 
Hi Rick,

Good job you found here but sorry you are suffering.

This place is full of information which can be so helpful. Read the information stuff and then ask. There is a lot of valuable advice.

Check out the O2 on the left of the message board. It works for many people.

Information will help you fight it and get some control.

Best wishes,

Ellick.
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Chad
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Re: Newbie From Aruba
Reply #2 - Feb 12th, 2009 at 10:17am
 
Welcome Rick and sorry you have this pain that we all have!
It sucks.  You seem like a naturalists like myself so what I suggest
is read the many threads in this forum and the links on the left to educate, manage, and treat your pain.  I'm assuming you got diagnosed in the states?  I'm not sure how many neurologists are in Aruba that have specialties in headaches. 

Aruba is a beautiful island.  My wife and I had our honeymoon there in '04.  We can't wait to go back.  We stayed at the La Cabana resort.

It's horrible that you have this while pursuing your dreams. 

Just some quick notes.  Check into using oxygen therapy.  I don't do it, but a ton on here do.  I use natural hallucinogens (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)
as preventative maintenence and i've been pain free since last August.
Research and do whatever works for you and realize we are all a family here and always willing to listen. 

Now, if I was only on that Kuku Kunuko Bus in Aruba, LOL!!!

Best of luck and I'm wishing you pain free days ahead Smiley

Peace,
Chad
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When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
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Iddy
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Re: Newbie From Aruba
Reply #3 - Feb 12th, 2009 at 12:36pm
 
Hi Rick, glad you found our shared home. Sorry that you had to.

Arm yourself with knowledge and ready yourself to fight back.

To PFD Smiley

Walk in Peace  Iddy
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Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama
 
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Bob Johnson
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Re: Newbie From Aruba
Reply #4 - Feb 12th, 2009 at 1:37pm
 
Indo. is not a treatment for cluster and, since it's not working, that pretty well excludes one of the lesser sub-types of headache for which it's appropriate.

We cannot ever tell for how long it may be necessary to take meds to control CH. Please get you thinking around finding good control vs. setting some, possibly, impossible goal of NEVER....

Going to throw some basic learning at you since you will, I expect, have to feed good treatment material to local medical types. [Bias showing!]
As time permits, explore all the buttons to the left, starting with OUCH. Othe resources:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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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 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]
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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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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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This is all good foundation information. As you read, it will trigger off questions to shoot back here. Folks here are always interested in the details of what your doc is Rx.



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Bob Johnson
 
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Guiseppi
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Re: Newbie From Aruba
Reply #5 - Feb 14th, 2009 at 1:31am
 
Retire to Aruba to run a B&B.......sounds like a dream movie ending!!! Wink

Bob's given you some excellent reading. Peruse that and you'll know as much as 95% of the MD's do about CH treatment. We find most get the best results by educating themselves first, then forming a partnership with a doctor to manage their CH. Be your own best advocate.

Welcome to the board.

joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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