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Hello all (Read 941 times)
Weirdofmouth
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Hello all
Mar 12th, 2013 at 5:50am
 
Hello. I live in UK and have been having left side episodic CH for about 4 years, usually one a day (I know, I'm "lucky"!) for a few months at a time then with 6 months or a year off. Hope some of you guys can give me survival tips. I use Imigran spray which helps but the first 20 minutes are hellish.
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wimsey1
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Re: Hello all
Reply #1 - Mar 12th, 2013 at 8:03am
 
Hey there, and welcome. Here's some general advice:

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
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« Last Edit: Mar 12th, 2013 at 8:04am by wimsey1 »  
 
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Bob Johnson
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Re: Hello all
Reply #2 - Mar 12th, 2013 at 8:19am
 
Suggest you contact your excellent support group for guidance on locating a headache specialist. I understand that you can access a headache clinic directly, by-passing local sources of care. But they can guide you.

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Bob Johnson
 
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Guiseppi
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Re: Hello all
Reply #3 - Mar 12th, 2013 at 10:05am
 
Welcome to the board Mouth, Lance and Bob have given you some excellent advice, I'll only add this:

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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 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Weirdofmouth
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Re: Hello all
Reply #4 - Mar 12th, 2013 at 10:26am
 
thanks for the replies
am keeping a log
have tried verapamil, didn't work
have seen neurologists
will check out headache groups
ta
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wimsey1
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Re: Hello all
Reply #5 - Mar 13th, 2013 at 8:16am
 
Weirdofmouth wrote on Mar 12th, 2013 at 10:26am:
thanks for the replies
have tried verapamil, didn't work
What was the dose; we need between 480mg to960mg


have seen neurologists
was that a headache specialist? The two are not necessarily the same


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