Hi Everyone: 
I sure am glad I found this place.  I didn't even know a forum for CH's existed.  I knew I wasn't alone, but I didn't know where to find any of you.
   So a little about me... I'm 33 years old and I've been getting cluster headaches for about 2 years.  Originally I was diagnosed with Trigeminal Neuralgia before I was sent to a neurologist.  My neuro sent me for an MRI to rule out TIA.  All clear!  Other than being in excrutiating pain every night (between 11pm and 2am), I am a perfect picture of health.
   I have 2 small children (ages 5 and almost 4).  My oldest son had a massive stroke when he was 2 yrs.old.     He had no prior medical history and there is still no specific reason as to why it happened.  He has cognitive and physical disabilities that we are still trying to work through.  The important thing is that he survived and is doing amazingly well considering the amount of damage the clot caused. My 3 year old is perfectly healthy and quite the smart a.
   I felt compelled to find a group like this one after last night.  I woke up around 12am after feeling like someone just hit me with a giant rubber mallet.  BTW I'm a righty.  I sat straight up and instantly felt intense pain.  I could not find the regulator to my O2 tank and almost panicked.  I woke up my husband crying and begging him to get up and help me.  We finally found it and I sucked that tank dry.  Headache went away, fioricet kicked in....back to bed.
   When the pain starts I can feel a twinge in my right nostril and in my temple.  I know that its coming in the next 2-3 minutes, full blown pain!  My right nostril starts clogging up and dripping.  My right eye swells, turns red and tears.  Sometimes the pain is so intense I bang my head on the wall.  Like that really helps. 
   Besides my O2 tank, I have Fioricet on hand.  Also, I take a daily regimen of Verapamil and Nortryptaline.  I really don't think that either of them are doing me any good yet I continue to take them.  I have officially refused to do another round of Prednisone.  I gain weight and if my butt gets any bigger, I will have to buy new clothes and I hate clothes shopping.  So there's my reason for that.
   I don't know how long my headaches last because I always take a Fioricet or breathe in the O2.  Before that (in the very beginning before I had any available relief), I would walk the neighborhood just to get my mind off of the pain (even at 2am).  Eventually they went away.  They used to be episodic but now they seem to be chronic. 
   I really feel like the pain is coming from my sinuses but my sinuses are clear.  I just don't understand how you can feel pain that intensely and not have a reason as to why or where it's coming from.  My neurologist said that when he dies and goes to heaven, the first question he is going to ask God is "What the F was up with cluster headaches?".  Apparently he can't figure them out either.

Brandi in FL
   

Beenyweeny wrote on Apr 18^th, 2009 at 8:07pm:

Hi Brandi,

Glad you found us sorry you had to. Well Brandi at least you are on some abortive and preventive meds already. The 02 works a treat for me and many others on this forum. As to your statement i think most of us would like to ask the same question ( What The F**@K).

Bill has already mentioned the beast affects us all in different ways and what works for one may not for another, but there's one thing we all share and that is the unbearable pain we endure during a hit. I hope you stick around because this is a great place to learn about the various treatments available and to talk to people who will totally understand and offer you support during these testing times.

PS Glad to hear your son is doing better...!

Take care

Lefty...!

Your meds routine makes me wonder if you neuro has the skill/experience which you need. Three items here:
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
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Compare the first list with what you are using.

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:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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This protocol for Verap is well established and would be a useful approach to give to you doc so that you can discuss options.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).