I came across this site while searching for any new information on those darn headaches!  I'm happy I found you all and hope that I can contribute.

I had my first attack while living in Italy about 15 years ago.  It hit like a thief-in-the-night and has been stealing sleep from me ever since! 

My ch's have evolved over the years, they have definitely become more sporadic as far as what time of the year they hit.  Used to be fall, around October, and now they come in both spring and fall. 

I used to be able to set my clock to the ch, 1:28 am every morning I would awaken and begin the pacing up and down the stairs.  Luckily 2 years ago they began hitting during the day which is much more manageable for me.

I usually have ch's once a day for 3 months followed by a year to 3 years of remission.  I guess I am one of the lucky ones that actually gets to be pain free for a while. 

I am glad I found a site where others understand just how painful these are.  I was with my wife last night when I was hit with probably the worst one I have ever had.  I was ready to run through the wall!  My wife is my champion and she is very sympathetic to my issue, but we all know that unless you suffer from these you can't really understand the pain.

Thanks again for this site and I hope to get to know many fellow prisoners of ch's!  :)

Welcome to the board, glad you found us. Your experience is similar to mine. In my 20's and 30's they stayed in a very rigid cyclic pattern. My 40's they went all over the map! Please check out the newest and greatest around here:

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

Also.......as far as abortives, Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Joe

I have been on Oxygen for the last few ch sessions that have hit.  It does seem to work as long as I get it going before the peak of the ch.

Thanks for the information!

Welcome, Mammoth. Yes we all know the pain and discomfort of having CHs and Joe has given you good advice. I am wondering what you have been doing to treat the attacks? Preventatives? Abortives? We can be of the most help by sharing what has and hasn't worked for us. Look forward to hearing more from you. God bless. lance

Thanks wimsey1!  I will say that the ONLY thing that has worked for me up until now is Oxygen before the onset, nothing else has even touched the ch. 

I did get a beta-blocker prescribed one time and if I could "predict" a ch it seemed to help a little bit, but when I had depleted a years worth in about 2 weeks I was told that I couldn't take them anymore! 

Whilst beta blockers can work well for migraines, they aren't too great for CH. What works a lot better are things like verapamil and lithium.

But also look into what people are saying about vitamin D3. I'm another person for whom it has resulted in me being CH pain free for over 1.5 years now.

Hey there! I would also back the Vit D3 regime to work! I've tried it and found relief within 3 days. Still experience the shadows but essentially pain free! Read up on it and definitely try it if you're suffering.  :)

Mammoth,

Have you tried energy drinks ?  If you can try a chugging half (or all if you do not have a problem with caffeine! )a red bull or a monster drink when you first feel pressure and pain starting.  I keep them by my bed sometimes and nearby at work too.  Usually it will slow down an attack or make it much shorter.

If you still get hit at night, try melatonin - its a natural sleep aid and some have great luck with it.  I take about 10mg about 20 minutes before bed and it generally allows me a good nights sleep.

All the other advice you have gotten is awesome and I can say it has all helped me.  So read read and read some more of this site, learn what you can, and ask lots of questions.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
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If you have the option, we suggest workiing with a headache specialist. Others doc have meager training in treating complex headache disorders.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END 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.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END 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.
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Print the PDF file, below. Any doc you see should be working with meds outlined here.

The usual approach: steriod to kill Cluster within hours, but for short term use only; then a long acting preventive which will block/reduce attacks; then an abortive to knock out attacks which sneak thru.

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