Hello there. Your story goes to show that CH can bring down even the most physically fit people. Now we can say that cluster headaches are worse than being shot twice and getting a head injury from a parachuting accident.

Research suggests that many CH sufferers got their condition from a head injury so it may have been related to your HALO accident.

You've mentioned a number of meds, but have you tried oxygen? If you're not getting relief from your current regimen, keep trying different things. I read that Vitamin D helped a chronic sufferer become pain free so maybe that's worth researching.

Anyway, perhaps let the experts on this forum know what you've tried before so that they can give suggestions that you can talk to your neuro about.

Hang in there - relief is on its way.

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Check out this link on oxygen. It should be your first line abortive. I stop my attacks in about 6-8 minutes just by huffing on the oxygen.

Then visit  clusterbusters.com    our sister site which deals with alternative treatments to CH. Lots of successes going on over there. Glad you found us.

Joe

Hey there, and welcome! First, let me thank you for your service. Second, may I say how sorry I am that CHs have taken so much away from you. Third, yup, several of us are chronic which means getting hit just as you describe. In fact, there's a bit of ongoing discussion on which of us, the chronics or the episodics, are more fortunate. Chronics because we know we're getting hit and when and are prepared for the full on frontal assault. Episodics because they get some R and R in between cycles. You are due for a cluster vacation, my friend, but when it will come? Please let us know what meds you have tried and in what doses. Many times docs prescribe the right stuff but at the wrong levels. And the great news is: O2 is effective and relatively cheap and safe. Look forward to hearing from you again. God bless. lance

Hi Sarah, and welcome. Sorry to hear you are suffering, and it seems there is a bit of depression reflected in your post. Perhaps not, but it would be quite natural and usual. You asked for some advice. Well, the early game advice we give is pretty much the same. You should exhaust the following list early on in your search for relief before trying something more exotic:

1. Find a good headache specialist-this is imperative. You don't say if you are seeing your GP, a general neuro, or a specialist. In the long run, you want the specialist.

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.

4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance

lithium and verapamil worked pretty well for me.  i stopped taking them because i found a certain "alternative" that didnt put me in a constant brain fog, but the lith and verap combo did work pretty well nonetheless.

Magic Shrooms help many, but it's much more complicated then just chewing a gram, it requires a careful detox and dosing schedule, please visit our sister board at clusterbusters.com to learn how to properly bust with Vitamin "M".

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

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No, but you can carry an E tank which is what most of us do. Along with a couple of Mosters or Red Bulls. I get you may be resistant for whatever reasons to preventatives (although the Clusterbuster approach is a preventative) but don't give up hope of finding an approach that will work. Could you tell us a bit about how you use O2, and the equipment you have? That, too, can make a huge difference. Blessings. lance

Jamz wrote on Apr 10^th, 2013 at 1:49pm:


A dose of 180mg a day is a very low dose of verapamil. People often need 360-480mg a day and some go to over 1000mg a day to get relief.

I'd discuss with your doctor about increasing this dose, but do this with your doctor as they will know your medical history and what is appropriate for you.