Hello all, newbie to the forum, oldie to the beast relationship.
What a great forum, don't believe this was around back in the day. Can not express how thankful I and everyone should be to whom ever started this.

Quick history. 53 years old, first headaches age 20 lasted until 48, reappeared last month after 5 year relief. Diagnosed around age 25 with classic clusters from Joel Saper at the Michigan Head and Neurological Institute in Ann Arbor. Currently on same meds as before, Prednisone and Verapamil. Hoping to get O2 soon.

Couple observations from my experience before.
Around age 30 had a max level episode, wanting to die at home, drove down dirt roads with one eye partially open. Saw stop sign at last second, went through intersection, huge adrenaline rush, level went from max to zero immediately. To bad medical field can't put that together to figure out the chemical imbalance.
Prednisone seems to be a pause button for me, after the burst the beast is still there. Burst is low now (10 mg), I wake up throughout the night with aches.

Questions,
The other night took sudafed and no aches. Anyone else do this? Still feel pressure but not coming through. Excedren did not allow this.

Has anyone had an absence for years then return?
Is this just a one time fond farewell or another long term relationship?
I'm to old to go through this again, don't know if I can make it or put my wife through it again.

My heart bleeds for all of us that need this site.
But love to all that are participating.
Thank you

Thanks Mike
I am on 360 of Verapamil. Is there side effects with high doses long term. Am willing to try if it works, seemed to get constipated when increasing it from180 to 360.
Pred burst only started at 40mg, decreasing 10 every 5 days. Went thru 3 bursts already. Long cycle this time, already 2 months in. Again seems like pred is a pause button.
Going to try to get O2, used it years ago. Do you find this helps break the cycle quicker?

Thanks Metro
Really gotta get some O2, I agree, it worked well with my prior episodes.
Have you or anyone had any luck in finding a way to sleep through the night without an episode?

No miracles yet, shoot.
How do we all make it. My heart really aches for all of us. It's torture.
I feel for my wife, she will wake when they get to level 7's and above to message my neck. Gone as far as to tell her to find someone else, but God knows, I wouldn't be here without her.

Hoping everyone has someone to get through these.

Hi all, I'm 40 and on week 18 after being diagnosed. My CH presents like a stroke and after spending a few days in hospital suspected of having a stoke ...CT and MRI's later I was told By my neurologist i had CH. Knowing nothing about this condition both my wife and I have had a steep learning curve. I have an almost constant pain in my left temple and 'Mr Pushy' behind my left eye. The left side of my face, eye and mouth is in an almost constant state of drop and looks worse when the pain increases.. My left arm also becomes numb and lazy. I'm on amitriptyline at night although I've just been switched to verapamil and I use sumatriptan injections and O2. The injections are a god send and I carry one everywhere. What I am finding hard is the almost constant headache which switches into a full attack mostly at night during late evening or at 2 am. I'm hoping my remission comes soon but at the moment it looks slim. My constant headache was not a feature until about 2 months ago. I've since been told that I may be a chronic and neuro is exploring a longer term plan for me....My wife is a big support and understands and gets me... I'm a very lucky man... Recently I am getting bad nausea with the pain... However I've just spent the last 3 days relatively pain free even in my temple...felling great until last night when it returned with a vengeance... Rocking like a crazy man rubbing my left temple and crying from one eye until the release and feeling of exhaustion when it ends only to repeat itself a few hours later....I hate this thing with a vengeance ....the beast is officially off my Christmas card list...I'm comforted to see so many on this site who replicate what we are all going through and I'm glad I found this site and as my wife has said " at least your not alone" Well that's me and I wish you all well PF
Dave
UK

Welcome to the board! I'll echo what Mike said, you'll learn that knowledge is your best ally against the beast. The D-3 regimen he speaks of has had me pain free for over 3 years after 30 plus years of episodic:

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Also take a look at our sister board:

Clusterbusters.com

Alternative, non mainstream treatments to address cluster headaches. They turn out some pretty impressive success stories there. The best new is you're not alone anymore.

Joe

Dave, if you have trouble with the headaches coming back quickly after you stop the oxygen:

1: Try drinking an energy drink while you abort with the oxygen. I use a Sugar Free Red Bull, they all taste like piss to me but the red bull seem the least offensive! Any containing caffeine and taurine will do the trick. It pushes the come back attack several hours down the road for me.

2: It didn't work for me, but some people have had luck with staying on the oxygen another 5-10 minutes after the attack is aborted to prevent the come backer.

Joe

Guys

Once again thanks for the great tips. For reasons unknown my episodes seem to have settled into shadows during the day to almost clockwork attacks In the evening. The 1-2am attacks are waking me up more and more over the past few months. I know that the pattern can take some months to settle.. But I am truly tired now...and the night attacks are just leaving me feeling abit crappy during the day as a result ( I say abit...understatement) and this just is not fair on my poor wife.

So I have a question ...

I'm on week 19 and was wondering what the chances are that I may slip into remission, what are your experiences regarding this? I am new to this so please excuse the questions if I've missed the obvious answer.

Thanks Joe... IM seeing my doc tomorrow re an ECG and upping my verapamil ... I appreciate the advice and help you guys put in

Cheers

Dave
UK

Nothing wrong with lurking and learning warrior. glad you decided to jump in. Spring and fall episodic here too. Used to just dread the changing of the seasons. This board changed all of that for me, hoping it does the same for you.

Joe

Hi Jaymie and welcome

It looks like you've found a neuro to avoid with his (or her) diagnostic skills being hindered by a total lack of understanding that women get CH too even though guys get them more often. At least you found a good one in Vancouver and well done in taking the initiative in doing that too.

You'll love oxygen. I can kill off mine in about 5 minutes using 25lpm and a non-rebreather mask. You can read up how we use it at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

I'm a bit confused as to how you can make a mask out of LEDs. Care you enlighten us with your handiwork?

With your other medical issues it looks like many of the standard CH medications might cause issues, but do ask your neuro about verapamil or lithium as a preventive. Also do look at how many of us are finding success with vitamin D3. Again check it out with your neuro too.

Welcome to the board Jaymie, sounds like you have one hell of a full plate there. Do talk to the neuro about the D-3 regimen, it's had me pain free 3.5 years after well over 30 years of episodic CH. This is the link with the info:

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Good luck!

Joe

That's great news Jaymie, I hope they work very very hard at getting O2 for you.
All the best