First off thanks so much to all of you who post, share, support the site, etc. I have found the site and message boards to be a safe anchorage over the last several weeks. I am a first time CH patient and first time poster. Headaches started almost to the day one month ago. Started waking up exactly at 1 am and then around 5am. Sometimes had one around 9pm.

Everyday like clockwork, 2-3 attacks per day each lasting 2-3 hrs. Absolutely incapacitating and textbook symptoms - axe in one side of head, needles in the eye, runny nose. Came on fast (5 min) and lasted 2-3 hrs. Within a week and 3 visits to my GP we figured out what the heck it was. The GP was insistent that I have an MRI/MRA before moving forward with treatment. Both turned out normal. After that he was really nice about pursuing a plan of treatment and actually was forward enough with me to say to me that he needed to do some research as he had not had that many patients with CH and needed to brush up on the latest treatments.

He prescribed a tapered dose of Prednisone, Verapamil, triptans for acute treatment, and lo and behold O2 also. It took almost another week to get the 02 for various reasons. I found the triptans (Treximet, Imitrex Nasal Spray), to help quite a bit to lessen the length and severity of the attacks. I was concerned about excessive use of the triptans as I usually had 3 attacks a day but I tried to limit it to 2 doses max per day. Was not always successful in limiting to only 2x per day and experienced a few rebound headaches but they were far better
than the axe in the head.

So after the second week of nightly attacks I finally get the 02 and was pleasantly suprised as I had been a bit
skeptical about sucking air helping. But I found that if I caught an attack soon enough it would either abort an attack, delay it, or if I was already in a full blown attack that the 02 helped to lessen the length and severity. And I've been using a crappy mask that I've discovered after reading posts on this site is really only a partial rebreather. And I had success with that at around 10-12 lpm flow.

So after 3 weeks of nightly attacks and using the abortives and 02 I could somewhat cope and tried to get back into my daily life. Problem was the attacks seemed to come only after I fell asleep and I found that i often could delay or miss an attack if I did not go to sleep. Well, I guess that was one way but I also needed to go to work to pay for the damn triptans and 02, and I needed sleep in order to function. My GP then told me to try and lay off the triptans as much as possible, use the 02 as needed, and prescribed a drug called Amitriptyline (25 mg/ before bed).

After two days of starting the Amitriptyline and relying on 02 when I felt anything creeping up, I've not had above a
level 4 or 5 and have had to use a triptan only 3 times in last week. After reading up about Amitriptyline I'm not real exited to be on that drug very long.

And that leads into one of my questions.... do you guys/gals think the Amitriptyline has broken or muted this cycle or maybe I'm at the end of my cycle and can stop using the Amitriptyline? It does not knock me on my butt as much as some have stated but I do need plenty of sleep and a very large and strong cup of coffee in the morning.

Another question I have is about the mask. I know I am not using the ideal setup but have had some success. Is that mask available on CB.com for 28 bucks worth it? Whats the difference between that one and the higher priced one at 67 bucks?

I do have some shadows and twinges that range from fleeting to aggravating but nothing like a full blown attack. So I'm wondering what you guys think... am I perhaps at the end of a cycle or is the Amitriptyline masking the symptoms, or perhaps both?

Any advice, suggestions, related experiences are greatly appreciated.

I can only answer about my experience with Amitriptyline (Elavil).  It is an antidepressant, but as you are aware, so many drugs are effectively used for treating other problems.  I am far from being any kind of expert on CH, nor do I even pretend to know everything available for treatment, but I would think that Amitriptyline would be prescribed to help you sleep a little better? (help me out guys because if I'm missing something that helps you sleep as well as maybe aborting some night hits, I damn sure want to know about it!)
I was on Amitriptyline several years back, I would guesstimate several=1999 or 2000..to help me sleep.  I am a chronic insomniac and have been for years.  They definitely helped me get some sleep.  I was on 25mgs for some time and also the 50mgs.  I actually still have some of the pills in the house.  The Dr. had no problem prescribing 30 a month and I had auto refills every 3 months, so I amassed a bunch of those little red pills. lol  From time to time, I still take 1 of those when I need a good night's sleep.
I never had any really adverse side affects, and I would say I took those for a good year...not every single day, maybe 3 times a week.  I did have a few mornings when I was taking the stronger doses, (Dr advised me if 50mg wasn't enough to knock me out, I could take 100mg) I woke up feeling a bit hungover, from the meds.  I always hated that, therefore VERY RARELY took 100mg.
He was aware I had been diagnosed CH, but I don't think I had a cycle while regularly taking the Amitriptyline, so I cannot advise on the pros/cons of that.
Hope I've answered 1 of your questions.
Good luck and pain free wishes!

Welcome home!!  Sorry you had the need to find us.    And I think I would be remiss not to congratulate you on both finding us and finding a CH friendly doc...during your first cycle no less!!!!   If I remember the article correctly, most of us average 6 years from onset to being correctly diagnosed so you are "waaaayyyyy" ahead of the curve!!  Just the fact that you found a doc humble enough to actually tell you up front that he didn't have all the answers and needed to do some research on treatment is an absolute miracle as far as I'm concerned!!

As for the amytriptaline......I think that was the 4th thing they tried on me after enderol, lithium, and noritriptaline......I could not tolerate it!!   I don't remember having a problem with feeling drugged in the morning but I would wake up several times during the night in severe pain with both of my hands and forearms "asleep", it felt like they were about to fall off.

O2 has been effective for me with just a standard non rebreather mask that I confiscated from a hospital ER so I haven't bothered to order the Optimask.  You will find many people posting on the board about positive experience's with it's use though.

Dallas Denny

Welcome sch.
  By all means get the mask (op2timask)  it is way way better. I just ordered my second one.

  Read all you can here.   And if you are coming to an end of your cycle, thats GREAT.
  but I would add that you need to Keep that O2 around year round, and if you can stock up on some of the triptans, because you will never know when this mean beast will return.  Always be prepaired for it.
    sucks that it has to be that way, but really sucks if you have to wait days for appointment and meds next cycle.
   PFDANS to you !     lorac

The O2PTI mask available here is worth every penny. The cost difference is in the face mask part. The higher priced one has a nicer more durable face mask. They are inter-changable.

Most of us have the cheaper one that works great. You can buy the better face part later if you want.

Don