So here i go again back to back clusters starting last night. I take Batch's D3 regiemn 600mg Lithium, 80mg Verapamil ( i know low but only because i have BP issues ) but i will be increasing 40mg next week, 150mg Topamax, i can hardly type right now. i am at a k-8 have taken a relpax did nothing, tried oxygen, not helping, took 2 dilaudid still nothing. I feel like just giving up.

Im already a member of the board. I dont know what you want me to read on there.

How high do you have your oxygen set, and how long do you use it for?  I am not a pro at using this yet to abort mine because I just started last cycle, but I found that it didn't abort mine all of the time but did knock the pain down to bearable.  Just keep trying and don't give up on it yet. 

The only thing from experience I can say is for the first 10 years of suffering cluster headaches the only thing that got me through was Fioricet.  It stopped working for me about 5 years ago though.  I don't know if you ever tried it, but it might be worth asking your doctor about.  It works very fast because it dissolves very fast.  You just need to take it at the first sign of a headache.  Anyway, those are my 2 cents.

Hope you feel better soon.  Will pray for you.

I appreciate it guys I will read the clusterbuster site tomorrow when I go back to work. I had to leave . I have tried foricet. Does nothing for me. Right now I'm okay no CH but I still have shadows. I have done the prednisone taper. I think since I'm chronic it may make it worse because of the withdraw headache afterward. I see my neurologist on Monday so hopefully we can try something new.

Please understand something before you go to your doctor on Monday. The Clusterbuster method is not something he or she will prescribe. It is the judicious use of hallucinogens.

If you still have the oxygen concentrator, even with a proper mask with a bag on it, this does not work for CH. It does NOT put out %100 O2. We need the tanks. That's WHY the oxygen (O2) isn't working.

Those of us that say pain meds don't work for CH is because we've done that. For me they are a trigger. I took Tylenol #4 for 3 months every 4 hours, even setting my alarm for 4 hours at night. I had some of the worst attacks I can remember during that time.

For the Dilaudid to come close to helping, you would have to take it every 4-6 hrs around the clock. In time you will need more to do the same thing. Then at some point you WILL become a basket case.

Please get a decent O2 setup before you say it isn't working. All we're trying to do is help you find some relief.

Don

i have a tank now with 25lpm.

Brew wrote on Jul 19^th, 2012 at 1:49pm:


i will look into it. Thanks Brew.

lydia nichole wrote on Jul 20^th, 2012 at 9:55am:

If nothing else is working, please do.

I suffered through almost 20 years of this crap (5 or 6 of them being chronic) before I discovered it. With only one hiccup in the past two and a half years, I have been virtually pain free.

PM me if you want more information.

Praying you find something that works. Imitrex doesn't work for me but DHE injections do. Not a Triptan but a strong vaso-constrictor. It also comes in an inhaler called Migranal. The shots are much cheaper than Imitrex. Migranal is not so cheap.

O2 breathing technique is critical, if we empty the bag before our inhale is done it causes anxiety and panic and this can cause the O2 to fail to abort. Standard NON-rebreather masks only have a 1 liter bag, this is easily emptied. The O2pti has a 3 liter bag and is made just for CH.

The longer we  wait to hit the O2 the less likely it will work. (higher Kip). Start the O2 as soon as an attack starts at 25LPM, breathe hard and as fast as you can, when the pain starts to leave you can turn the O2 down until the attack is gone. Hyperventilation is the fastest way to abort with O2. Give it your best.

Don

Doesn't bother my stomach. Please check my last post I added some O2 stuff. For me and some other folks the DHE lasts a lot longer than Imitrex, up to 24 hrs. Also is use DHE IM shots, intramuscular. They don't hurt for me. The inhaler is too slow to stop a hit but can help me sleep.

Don

Forgot to say the DHE inhaler is too slow for me to stop a hit but will give me some sleep. Sorry so scattered. Does your mask have open holes on the side? If so you need to tape them shut. Open holes will let in outside air, not good.

I abort with O2 in less than 4 min @ 25LPM, with the O2pti.

Don

Quote:

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I have won the lottery.