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

Hi and welcome bigbird. I have had episodic cluster headaches for about 35 years, which most recently returned following 3 years pain free, so yeah after you don't even think about them anymore being a part of your life... they come back.

Before I found more suitable meds I probably took 100's of Sudafed tablets, along with strong coffee, which together seemed to work fairly well. Pseudoephedrine in Sudafed is a vasoconstrictor which is probably why it works as it does for clusters. It also  has a long list of side effects, so I would recommend something else.

If you can get oxygen that would be great, works almost as well as imitrex injections, and my last three insurance cover it. Are you seeing a doctor willing to prescribe O2? Most doctors are clueless how to order it though, so you may need to tell them. If you are still in Michigan, try Apria Heathcare. The prescription should read "Oxygen, 12-15 liters per minute, as required, for Cluster Headache".

I had a 7 year break when I was in my middle 50's.
Now I'm in my middle 60's and chronic.
Go figure.

Sorry to hear that for you and me Bob.

Sorry Bob.. thought you outgrew them.. maybe you're going thru your second childhood. ;)

Bigbird.. yes... get some O2. And make sure you get a HIGH liter flow and a NON-rebreather mask. The mask makes a BIG difference. and a Red Bull (or energy drink with at least 1000mg of Taurine) usually works "fair" for most of us if you get to it fast enough.

I usually hit the O2 and if it isn't working fast enough - then I down a can of Red Bull and get back on the O2. If I'm not above a 6 this will usually stop a hit. Above that.. I usually have to go to the meds. And I hate that.

Read the Imitrex tips. It usually doesn't take the whole does of Imitrex for a cluster (we don't know why - it just doesn't). You can break up a shot into two or three doses. and they work just as well.

Hope this is a short cycle for you.  :-*

Welcome to the board, please take a second and read this 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!


Joe