Hello, I am new to this forum and after reading all of your suffering I wanted to share my story and what has changed my life.
I am 55 yrs old today.  for 50 of those years I suffered from clusters or migraines so severe I was not functional.  Usually I just rolled up in bed with a pillow wrapped around my head and passed out for 6-12 hours.  When I woke up I was in a bed soaked with sweat.  Often the nausea before the headache would keep me praying at the porcelain alter until I usually passed out.  When I was a kid they told my mom and dad it was a tumor.  My dear wife of over 30 years has been at my side through this all never wavering in her support.
The only medication that helped was Midrin which I would eat like candy if I could before the nausea set in.    

5 years ago I was going through a medical exam for my blood pressure which was high and not responding to treatment.  My doctor told me that I should get a sleep study to see if sleep apnea was contributing. 
Now that beautiful wife of mine had told me I sounded like a freight train when I slept and the study sounded plausible.  I did it.  ----   WOW !!!  No wonder oxygen helped  my blood oxygen was dropping to 60% which is BAD.   

I now have a Bi-PAP machine, it took over a year before I could get used to the GD thing.  I still hate it but wear it EVERY night.  Once I started using it regularly my headaches all but stopped.  I have the same bottle of Midrin I got over 3 years ago.  The apnea was also the primary cause of another problem I have - GERDS.  That has also gone into remission since I started using the machine.

I don't know if apnea is the cause of any of your pain, but if you snore check it out. 

God bless you all, I know the pain and pray for all of you and your families.

Glad you're getting some relief there Mastiff!

From your description so far, it does sound to me like your headaches were more in the migraine category.

Hi Mastiff! I am thrilled that your CH is in remission. I don't like to hear anyone is getting hit.
I will, however, make a few statements, not intended to offend, but, perhaps help you understand us, while we can better understand you!
Sleep Apnea seems to be the affliction du jour. Plenty of Apnics here who have not found relief from CH.That being said, I'm thinking the 02 delivery while you are asleep seems to be doing  you some good..and I can accept that completely...BUT I never thought about the connection between CH and CPAP-which is a constant delivery of 02, I believe.
I guess I should ask, Mastiff, have you been diagnosed with CH? Have you answered  the quiz on the left here? CH is said to be caused by a malfunction of the Hypothalamus, but a hit CAN be successfully aborted by a high delivery of 02.
Overall, PF is PF, and that is a wonderful thing. I hope you continue to be PF.
Please keep us posted.
Cathi ;)

Edited to qadd. HAPPY BIRTHDAY!

Mastiff wrote on Aug 22^nd, 2009 at 6:54pm:

Hello, I am new to this forum and after reading all of your suffering I wanted to share my story and what has changed my life. I am 55 yrs old today.  for 50 of those years I suffered from clusters or migraines so severe I was not functional.  Usually I just rolled up in bed with a pillow wrapped around my head and passed out for 6-12 hours.  When I woke up I was in a bed soaked with sweat.  Often the nausea before the headache would keep me praying at the porcelain alter until I usually passed out.  When I was a kid they told my mom and dad it was a tumor.  My dear wife of over 30 years has been at my side through this all never wavering in her support. The only medication that helped was Midrin which I would eat like candy if I could before the nausea set in.     5 years ago I was going through a medical exam for my blood pressure which was high and not responding to treatment.  My doctor told me that I should get a sleep study to see if sleep apnea was contributing.  Now that beautiful wife of mine had told me I sounded like a freight train when I slept and the study sounded plausible.  I did it.  ----   WOW !!!  No wonder oxygen helped  my blood oxygen was dropping to 60% which is BAD.    I now have a Bi-PAP machine, it took over a year before I could get used to the GD thing.  I still hate it but wear it EVERY night.  Once I started using it regularly my headaches all but stopped.  I have the same bottle of Midrin I got over 3 years ago.  The apnea was also the primary cause of another problem I have - GERDS.  That has also gone into remission since I started using the machine. I don't know if apnea is the cause of any of your pain, but if you snore check it out.  God bless you all, I know the pain and pray for all of you and your families.

I am so glad you have found help for your pain - I have to sleep with a mask on at night as well it has helped with my Gerd. Not my migraines or my clusters, I wish it had.

Neither CPAP nor Bi-PAP is a cure for CH. There are literally dozens of folks on this board for whom CPAP therapy has helped improve their sleep (me being one of them), but has not done a thing for their CH.

And Cathi, just to clarify, CPAP does not deliver pure O2 while sleeping. It is simply pressurized room air (20-21% O2) which keeps your airway open while sleeping. The reason blood oxygen levels drop so low in apnea patients is that they go for extended periods of time without breathing. When the airway is forced open by pressure, normal breathing is possible and oxygen levels stay above 90%, which is normal and healthy.

Cathi_Pierce wrote on Aug 22^nd, 2009 at 7:37pm:

Hi Mastiff! I am thrilled that your CH is in remission. I don't like to hear anyone is getting hit. I will, however, make a few statements, not intended to offend, but, perhaps help you understand us, while we can better understand you! Sleep Apnea seems to be the affliction du jour. Plenty of Apnics here who have not found relief from CH.That being said, I'm thinking the 02 delivery while you are asleep seems to be doing  you some good..and I can accept that completely...BUT I never thought about the connection between CH and CPAP-which is a constant delivery of 02, I believe. I guess I should ask, Mastiff, have you been diagnosed with CH? Have you answered  the quiz on the left here? CH is said to be caused by a malfunction of the Hypothalamus, but a hit CAN be successfully aborted by a high delivery of 02. Overall, PF is PF, and that is a wonderful thing. I hope you continue to be PF. Please keep us posted. Cathi ;) Edited to qadd. HAPPY BIRTHDAY!

You are correct, I have some symptoms of migraines and my doctor diagnosed me with both.  My pain is stabbing rather than throbbing and always in the temple.  I have very red weeping eyes (my brother says it looks like I lost a fight) and a lot of drainage from my nose.  However I also experience severe nausea.  If I eat anything with MSG or am around a lot of tobacco smoke the headache has throbbing with the sharp stabbing pain.  Most of the time they seemed to get better and wham I was down again, sometimes 3 or 4 times in a 24 hour period.  Occasionally I would get a warning of up to an hour that hell was going to break loose, most of the time they happened in 10 minutes or less.   I was a mess and caused my family a lot of stress.  I was sure that when I died it would be from one of these headaches.  Another trigger I have is the weather, I could always tell 8-10 hours before a storm would hit.  But flying or elevators never set it them off that I can remember.

I was also recently diagnosed with Protactinoma - which is a tumor around my pituitary gland the put a lot of pressure on my optic channel and my hypothalamus.  That is also under control now.  My doctor found that 'interesting' but we are unable to determine if that was affecting the headaches I had.  All I can tell you is that for me the severe stabbing headaches with the runny nose and boxers eyes have all but subsided.   A good dose of MSG or smoke will still give me the more classic migraine which is alleviated with Midrin.
Brew is also correct on the Bi-Pap or CPAP - only clean air forced in, the mask has ports for oxygen which adds more relief.  I did use the ports initially, but found that I no longer needed the O2 boost after a few years.
Kilroy - what can I say - you have my prayers and hopes that it gets better.  Have you tried adding O2 to the mask ports?  I think it helped for a while. 
You are also right about the affliction du jour.  However 60% blood oxygen and 40 episodes an hour were pretty convincing that I have the real thing.   A real sleep study is critical, the first I did was an at home study.  WASTE of time and money.  That caused a one year delay in effective treatment which included O2 added to the mask.  The difference is the ability to get a good brain scan and O2 readings.  My first machine was a CPAP - wrong machine for me - important - for me.  I needed the Bi-PAP and O2.  If you suspect you have apnea get a hospital study that takes 12 hours and has direct supervision.

I don't think there is a silver bullet for any malady, my hope was to share my story and if I helped just one person, then at least I have helped.

PS
I looked for the "quiz on the left" and did not find it.  Where should I be looking?

Mastiff, if you look on the left of this page, under CH.com, you will see a list of subjects, beginning with New Visitors.....Number 4 down is "cluster quiz"......from what you've said, CH is not the problem......and, it just might be CPH...Icepick headaches..but, I'm not a Dr... hey, I'm not even a Clusterhead! I'm just someone who hates the beast!

Brew, thank you for expanding on my CPAP info. You're right, pure 02 is what's required for CH, but I can see where SOME might think it could be the fix...alas, I wish it were!

Mastiff, keep searching! I wish you answers to yo9ur medicaL PROBLEMS, AND pf REALLY SOON!

cATHI :D