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Cluster Headache Help and Support >> Getting to Know Ya >> Hi. I'm New.
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Message started by IvyClimber on Jul 12th, 2009 at 10:57pm

Title: Hi. I'm New.
Post by IvyClimber on Jul 12th, 2009 at 10:57pm
Hi. Just wanted to say hello, and that I'm so thankful to have found this site.  My name is Amanda, and I'm a teacher in south Mississippi.  I'm 26 years old, and I have a wonderful supportive husband and 2 cats.  I've had clusters for several years now, and I'm just now really understanding how to really deal with them.  
Just from reading about treatments on this site, I've realized that the first doctor I ever went to really understood what was going on with me... she gave me a de-escalating dosage of Prednisone which totally stopped my cycle. It was amazing. Unfortunately, she never told me what I had, and since she worked for my university health service, once I graduated, I couldn't go back. Every other doctor I've told about the Prednisone treatment has looked at me strangely, because they just don't know about cluster headaches. I've been treated like a drug-seeker and an over-reactor at several doctor's offices, and the doctor I've got now, though he diagnosed me, and prescribed me Imitrex, doesn't seem to know or care about ways to stop my cycles.
That's all kind of a bummer, but I have to say that I'm so glad to know that there are others like me out there, that there are so many treatments I can research, try, and suggest to my doctors, and that it's all here on this website.  I've got so many questions. I'm excited to be on this message board.

Thanks.   :)

Title: Re: Hi. I'm New.
Post by Val_ on Jul 12th, 2009 at 11:41pm
Hi Amanda,

Welcome!  Glad ya made it on ok!!  Yes, there is Lots of info to read here...   :)  Should you come across something you have questions about, just ask!!
So - on the left side of the screen you'll find a link to oxygen info - this is the best abortive you can find!!!  Read about it and get some!   ;)  It will be the best decision you ever made for your CH.  Works better than imitrex injectable in my opinion - no side effects!!!!   :D
Other than that, you stated prednisone, have you tried any preventatives to take with it??

Finding a good headache specialist - not just neurologist, but headache specialist - will help you in your journeys.

Val

Title: Re: Hi. I'm New.
Post by Bob_Johnson on Jul 13th, 2009 at 9:36am
Many of us, living where a headache specialist is not to be found, have worked to educate our doctor. IF their ego will accept it, our feeding good MEDICAL information to them works to our benefit. In any case, print this entire article as an introduction for you and your doc.
========
 
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]
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Both these sites have much to offer and are worth your time exploring. Ditto for the buttons, left, starting with OUCH.
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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)
 
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
============================================

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
(Even if you don't want the booklet, explore the site.)
========
=========

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.








Title: Re: Hi. I'm New.
Post by Iddy on Jul 13th, 2009 at 1:18pm
Hello Amanda and welcome. :)

It took me a while but getting  oxygen saved me from a world of hurt!

All the Best

Iddy

Title: Re: Hi. I'm New.
Post by Guiseppi on Jul 13th, 2009 at 6:21pm
Welcome to the board! Aren't supporters great? Mine has stuck with me thru 30 years of these damned things and hasn't dumped me yet!

Bob has given you your first reading assignment. Most find they get the best results by educating themselves first, then assisting their doc in planning their treatment program. And yeah....oxygen........hard to beat! Glad you found us, welcome home!

Joe

Title: Re: Hi. I'm New.
Post by Callico on Jul 13th, 2009 at 11:55pm
Welcome aboard, but wish you weren't here!

You have already been advised by some of the best here.  The only thing I can ad to it is to feel free to ask questions.  you will find folks here who are more than happy to help you.

Jerry

Title: Re: Hi. I'm New.
Post by McGee on Jul 14th, 2009 at 3:21am
welcome to the mad house, i can only confirm what others have and will say O2 is the best got mine down to 5 min or less. the people who support u are great but remember they need support allso.

Mark (the loony toon with the key to the door)

Title: Re: Hi. I'm New.
Post by IvyClimber on Jul 14th, 2009 at 12:17pm
Thanks so much for the welcome. I appreciate the advice, and will def. look into O2 immediately!

Thanks so much for the article, Bob. I will print this out and share it with my doc next time I go in to see him.

;D

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