Hi again,
Like many other episodic CH suffers, my headaches stopped in Jan 2012 and I happily forgot about them and kept on living.
Well sadly but not surprisingly I'm back. They started again at the end of October. They usually only last six weeks or so. I have been surviving on oral Imitrex, Lithium, and am getting some high flow oxygen started hopefully this week.
I am up early due to the beast waking me up and a weird thing happened that I just had to share.
I ignored the warning signs this morning and just tried to go back to sleep instead of taking the Imitrex. Dumb move. The pain became totally out of control. I was laying there, fist pressed into my right temple, trying not to move or even think. I started feeling so sorry for myself and worn out from this shit I started to sob. I cried for maybe 20 seconds and the damn headache went from an 8 to a 2! I was so stunned I stopped crying. It started to come back so I cried again for a bit longer. It totally aborted it!
Weird! I am usually in too much pain to move let alone cry. I don't know if crying will work again or work for others but it's worth a shot!
I look forward to reading here and learning some new things so I can face this cycle.
One thing I noticed is that my Imitrex are oval white pulls now when they used to be pink rectangles. I'm a nurse who now works in hospice so I am a bit out of touch with what is going generic/latest treatments etc. I need to read up a bit.
I am on my phone so sorry about the formating! Thanks for having me back!

Welcome back, although sorry beasty has brought you here. :'( The newest, latest and greatest:

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Joe

For CLUSTER, Imitrex pills are the least effective form of th is med. Best is injection, nasal spray second, if more troublesome to learn how to use.

Injection is available with autoecject 6mg but many folks find a 3mg dose quite effective. (Get vial and units to inject.)

Verapamil is an easy preventive to use--not having to  fuss with blood work, as with Lithium, and has no side effects unless you have a preexisting heart problem.
==
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).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Thanks for the great info! I plan to spend my day off reading up on all this.
I have tried Imitrex injections. Every time I inject I get a worse hit exactly two hours later. Oral works well if I take it at the first twitch of pain. I am basically taking 50mg Imitrex 3-4 times a day. I have had to go up to 250 mg a day a few times. My neuro writes the script for up to 200mg daily and my insurance covers all of it. I realize how lucky I am as Imitrex is so damn expensive.
I spend most of the time with mild facial/ nasal pain that is annoying but I am functional.
The vitamin thing sounds great although fish oil has caused vaginal bleeding for me in the past. I'm willing to try again though.
Thanks again for the info and welcome.
PF days and nights to all!

Hi Kiri,
Maybe replace the fish oil, with flax oil.

Hoppy.

Kiri, it seems to me the core of your post had to do with crying to abort the CH. That's a very interesting observation and one I have not heard before. Crying produces a lot of changes in our body and maybe, just maybe one of those is productive to aborting a hit. Try it again, if you can do so at will, and let us know. In the meantime, I'd like to hear from others who may have had the similar or dissimilar experiences. Blessings. lance

Hey Lance, yes the crying thing was very interesting. I have experienced episodic cluster for about 14 years now. I do not remember ever crying during a hit before. I usually try to stay as quiet and still as possible since nothing external has ever stopped the pain. I just endure it until its over.
I rarely cry and I don't remember the last time I cried before yesterday.
Yesterday I was feeling a bit sorry for myself. I was woken at 3:30 with a headache and had a 12 hour day ahead of me. I was exhausted and sick of the pain. The headache had been going pretty strong for about 35-40 minutes and was not letting up.
I sort of lost it and broke down.
I can't cry on command but believe me I am going to try again if I get into that situation again. I can't imagine crying is a "cure" as I'm sure others have cried during an attack before. 
I would like to hear from others though. If crying works for me again I will start a new topic.

Kiri - I am new to CH - yay me!  I think I'm at the end of an episode cycle because the pain spikes only get to about a 4 and they are less frequent (1/day vs. 4-5).

Last Sunday I had the worst pain ever.  It was a 12 - not on the scale.  I asked God to spare me and let me die.  I started crying and the pain started to lift slightly.  I thought to myself that the crying would make it worse, but it didn't - the opposite happened. I didn't think much about it until I read your post.  I do believe that there may be something to the emotional release that crying provides.

I tried drinking Red Bull at the onset of an attack after someone kindly told me about it here.  That has worked for me.  (I drink the sugar free.)  It takes the pain down to a 2 or 3 every single time.

Best of luck to you.

Hi Kiri,
Laughing has been known to abort CH's in some folk, maybe
crying has the same effect.

Hopy.