Hi everyone.  My name is Michele and I'm a CH sufferer.  I wanted to tell you all a little about my history of headaches and treatment.  I had my first headache at fifteen. I onnly had one then. When I was 18 the cycles started.  I wasn't diagnosed until I was in my 30's. I suffered without anything helping. I went to the doctor and/or the hospital many times to no avail. Finally in my 30's a Nuerologists diagnosed me with CH. I tried many different pills, they didn't work. In the early 90's Imitrex come out and it was a Godsend for me. It worked! Now, when I get a cycle of headaches which is approximately everry 3 years that is what I take. My insurance has always covered it till this time. I am currently in a cycle since mid July. My insurance will only cover 2 prescripions a month. My Doctor appealed and they denied. He is currently in the process of filing another appeal. I'll let you know how that goes. Has anyone else have that experience?  If so, did you get the medication quantity over-ridden? Also, I have tried the oxegen the last 2 times I had cycles and it didn't seem to do anything for me. My cycles last usually around 2 months. At the last few weeks they are really intense and up to 3 headaches a day. I am at the point of wondering how much more can I take. I havea forteen year old and I am a single parent so I have a lot of things to do and at times I am having the headache while trying to do them. Driving I have found is impossible. I can't even see.  I so long for a cure. I was glad to hear of this website. I have been alone with this for years. Most people don't even understand what CH is nor do they comprehend the severity of them. I enjoy reading others sotries and have learned more on here than by a doctor. Thanks for reading! 
~ Michele

Here are lists of the most current thinking/practice for CH.

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

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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Excellent overview worth print out:

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the best 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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As you have time, explore the buttons (left). Several have multiple links; n.b. OUCH site.

Thank you both, that information is very helpful. I appreciate it!

Michele

Chad,
What exactly are shadows and what does the melatonin do for you?
Thank you again,
Michele

Welcome home, Michele. 

Read, read and read more!

Michele,

Since you are episodic, make sure that you are filling your prescription during your remission time.  This should allow you to stock pile enough to get you through your cycles.  Wishing you some pain free time. 

Regards,

Malcom

Hey Phil,

Are you saying I may can get it approved through mail in?

I have BlueCross Blueshield.  The last cycle of headaches I had I had no problems with the quantity they would fill.  I found out this morning they have put this limit on imitrex in the last year.  They don't give me a reason. I demanded to speak to someone who could approve the medicine. I had a 2 hour headache last night which was unbearable. I then fell asleep only to awake an hour later to another one. Now today my head is just burning and I had to come to work like this. I told them they are denying me the only medicine that works to stop my headaches.

Thanks for your reply,

Michele

Michele,

I have BCBS of Alabama and they cover ten shots per month.  Keep pushing them and they should cover some more for you.  As  for the burning, I get the same thing.  I consider it just a little reminder of what is inevitably coming.

Regards,

Malcom

Hi Pascal,

Yes they are annoying the hell out of me at this moment.  Is there anything you can do for them? 

Michele

Hey Wishbone,

I am not sure if I took it correctly or not.  I tried it on my last cycles about 3 1/2 years ago.  I am going to ask my Nuero doc about getting O2 hen I go next Thursday. It takes so long to get in. They treat me like a new patient because of the lenth of time between my cycles.  I also want to try the nasal spray.  How long does it take to work and is it always effective?

I too am very glad I found this site.  I have learned so much from all the good posters like you.

Thanks,

Have a great weekend!

Michele