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  

Michele,

One way around the insurance limit is to have the doctor prescribe the vials instead of the stat-dose pen.  You have to be able to give yourself a shot with a needle.  Then, you can use 1/3 of the dose which most people find to be effective.  You aren't really supposed to stretch a vial to 3 doses because of fears of contamination, but I have been doing it for years now with no issues.  Plus, the smaller dose seems to help avoid rebound headache which a lot of us get from Imitrex.

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

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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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Excellent overview worth print out:

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

Hi Michele,

Welcome. I'm so sorry to hear of your pain.  We do know how you feel... you are not alone anymore!

I too had the problem that you are having with insurance.  I called the customer service number myself and VERY EMOTIONALLY stated that it was unfair that my med. was limited due to the fact that I went months without using it, then when I did need it, I was denied access to it.  It was approved after my emotional plea.  After that, I made sure to get the script filled every month, even when out of cycle so that I would have it when I needed it.

Check out the oxygen info to the left of your screen.  You may not be using it correctly.  I don't have 02 yet but will be getting it before my next cycle.  It works for so many people here.  I'll bet that one of them will be along to help you figure out why it's not working for you.

Good luck and pf wishes,

Jeannie

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

Michele

Welcome Michele and i'm sorry you have had this pain for so long.
I'm in the same boat.  Clusters started when I was 17 and I still have them now at 32, but my remission has only been 6 months lately, but the cycles are short (like 2-3 weeks) with 2-4 CH/day usually.  I have been using Imitrex for years and have found that using them to the max doesn't always work.  It can actually cause rebound headaches when used to the max.  To prolong the pills I cut them in half so a pack of 9 doubles to 18.  I only use them at work and I pop them when I know the CH is coming.  How do I know?  I figure that out at the beginning of the cycle since they hit like clockwork.  At night I do those exercises that the Spaniard suggested under the medication section of this board.  I usually guzzle a Monster energy drink during the shadow and then vigorous exercise to follow.  This aborts my CH without the Imitrex which I need to save for work.  Read about using Melatonin at night and a slew of other OTC herbs and drugs.  O2 seems to be a fan favorite for aborting CH at home.  Just READ  your heart out and retain.  

Good luck and stay Pain Free!

Chad

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

Shadows is a term we give those headaches that start out like a cluster headache, but just never take off into the full blown hit. People describe them in several different ways but they are the attacks that are definitely not a run of the mill tension headache, but never ramp up into a full blown CH attack.

Many people have found that taking melatonin before bed time eliminates the night time wake up head aches. Start at 3 mg a night before bed time and increase until you find relief.

Another vote for rechecking the oxygen, to work for CH, your lungs must get ONLY oxygen, no outside air, no exhaled air. You need a high flow regulator, at least 15 LPM, a NON RE BREATHER MASK,  and it must be started at the first hint of an attack. Nasal canulas, low flow regulators, re breather masks have all proven ineffective at aborting an attack. Might be worth re visiting.

Welcome to your new second home! :)

Guiseppi

Welcome home, Michele.  :D

Read, read and read more! ;)

Another question.  What is it called when after a massive headache your head just burns inside?

Thanks,

Michele

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

Hi Michele,  welcome. I have seen alot of people saying they have problem with Ins. and Imitrex.  I dont know what ins. you have I have caremark and they will only fill a rx at the local pharmecy for acute problems,  all long term rx they will only fill two or three times.  They want the scripts filled through there mail in system.  The ins companies dont advertise this and I think that they just want us to pay the big bucks so they dont have too.  I dont know if this will help or if this is the problem.  Good luck and hope you have pain free days soon.   Phil

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

Hi Michele, Im not sure I wish I could say yes.  Its worth checking into when my ins switched to caremark I filled my scripts three times and the fourth time the pharmacist told me I was over my limit.  It sarced the sh!t out of me to think I was going to have to go without Imi.  I hope this is the problem but I'm not sure you will have to call the rx phone# on back of your ins card I have PMed you with some other info.  Best pf wishes,   Phil

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 Michele, welcome.

We call them mostly ''afterburns''. Annoying aren't they?

Pascal.

Hi Pascal,

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

Michele

You said you had tried O2 and it did not work.  Did you have a regulator with at least 15lpm and a non-rebreather mask?  I only ask because when I was first introduced to O2 it was by means of a concentrator and I was not high on it either because it went to 10lpm and I use a face mask.  I had soe success, but on kips of 7 or more I had to use imitrix nasal spray. Later I went to the tanks and a regulator of 25lpm and I can get a 7or 8 kip down to a 4-5 kip in like 5 minutes and completely aborted in 10 minutes.  Not trying to bore or insult you, but if O2 is not used properly or if it is not used immediately at onset then it may not be affective.  I am so glad you found this site and I pray you find relief and have PFD soon.  I have BC/BS and I can get 12 imitrix sprays every 30 days.  Wishbone.

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