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Cluster Headache Help and Support >> Getting to Know Ya >> Noob here
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Message started by Bigbluesman on Dec 14th, 2010 at 2:04pm

Title: Noob here
Post by Bigbluesman on Dec 14th, 2010 at 2:04pm
Hi,
My name is Matt.  I'm 40.  Last night at the emergency room was the 1st time I have ever heard the term "Cluster Headache".  For me it really started about 15 years ago.  I beleive that I'm in the 6th cycle I'v had in those years.  I never understood what was wrong with me and last night my ER Doc nailed it on the head.  She said "Cluster headaches, google it"...so I did.  OMG I'm not alone!  There is a name for this madness as well as a support group!  I'm just about in tears as I type this.  I'v been having the bad headaches after falling asleep for an hour, every night for the last week.  But yesterday, I came home from work with my work buddy and we had a couple glasses of wine and OMG!!!  You know what happened next.  But this time I decided to go to the ER.  And I'm glad I did.  My cycles have been roughly every 2 years for a couple weeks at a time.  I understand that many of you...no, most of you, suffer them more frequently than that.  And to that, all I can say is God Bless You!!  This is the 2nd cycle that my wonderful GF has supported me through.  I feel so bad for her to watch me run around screaming and crying and begging God to take me now.  But I am so happy today because I have some understanding and I know for sure that here is where I belong.  Its gonna take some time, but I'm going to read every word on this site.  Well, I'm at work amd thats all I can say for now....Thanks!..........Matt

Title: Re: Noob here
Post by Linda_Howell on Dec 14th, 2010 at 2:15pm
Welcome Mat.  (no pun intended)

     Everyone here knows exactly what you are feeling and how painful this condition is so NO...you are not alone in this anymore.

I must say "hats off" to the ER doc who told you cluster headaches.  Now you will need to find a doc who will treat you.  If you are only getting a cycle for a few weeks every couple of years you are indeed lucky, but even so you shouldn't have to suffer with no treatment.

One thing we tell all newbies is to read around this site, especially the links to the left.  Knowledge about this rare condition of ours is power.   

Alcohol is a trigger when in cycle but then you found out the hard way.   ;)

You are not alone in this.  We'll help so ask questions and read the links, stories etc.

Linda

Title: Re: Noob here
Post by mikstudie on Dec 14th, 2010 at 2:25pm
Welcome Matt, It's nice to know your not alone huh????

Your cycles sound a lot like mine,but mine are once every year rather than two years.I have so got my headaches under control since finding this place. I just came out of the shortest cycle ever, after finding these people.The beast got tired of me kicking his A$$ everytime so he left for awhile.

So many things for you to try,
Oxygen
Melatonin
Enery Drinks
The list goes on and on.

READ,READ,READ, and ask questions,we love to help.
And congrats on the doctor you have,very rare to know about CH.

Beer,Wine will trigger most clusterheads (sorry)!! But when I get out of cycle I make up for it. ;D

Title: Re: Noob here
Post by Bob Johnson on Dec 14th, 2010 at 4:09pm
Some basic medical info to start your education....




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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See the PDF file, below.
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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.

(See either one, depending upon your depth of technical interest.)
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Explore the buttons, left, start with the OUCH site and its multiple internal links.
====
If you don't have a headache specialist, consider one. So many docs lack training and experience in treating this relatively rare disorder......

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. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=======

As you read the messages here you will find much support and varities of information which will help you learn to treat a disorder which has many faces.





http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27 )

Title: Re: Noob here
Post by Jimi on Dec 14th, 2010 at 7:21pm
Another Kentucky boy....

Welcome to the board. After you have read everything, if you have any questions on what to ask for etc etc just ask.

If you need to talk, let me know and I will call you.

Title: Re: Noob here
Post by Bigbluesman on Dec 15th, 2010 at 9:54am
Thanks everyone!  as we say here in KY..."yall" are very kind.  Last night I had a real doozy..Instead of running around like a nut, I just sat back motionless with my eyes closed and mentally rode that pain like I was riding a bull.  It took 2 hours but I rode it and never even cried...I found that not poking and hitting my head is a good thing.  I would like to say that this morning I'm noticing that perhaps I have a sinus infection.  I still beleive that I have the cluster thing, but somehow it seems to be related to a sinus problem...Does this sound like an acceptable theory?  I'm going to try to get in to a nuro...today.  Thank you all so much for your kindness and I know I seem like a whiney Bi%$h, but right now, thats exactly what I am. This thing can really make you depressed! Thanks for your support.

Title: Re: Noob here
Post by Jimi on Dec 15th, 2010 at 10:59am
When you see that Neuro, tell him that you want to try 02. Regulator should be at least 15 lpm with a non-rebreather mask.

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