Hi.  I'm from the UK and  am new to the forum. I have had episodic migraine and Chronic Cluster Headaches since 1983. Over the years, I have tried many medications but nothing has worked.  An occipital nerve block even made things worse. Last year I tried lithium but it gave me mild but regular seizures plus a host of other nasty side effects. This year I started a course of Lyrica  (Pregabalin) and the regular nightly headaches stopped. This was a great relief but I have become very depressed and my memory gets really screwed up. My doctor says it is only an anti-convulsant and the problem must lie elsewhere. He is arranging for me to have psychiatric help. Does any member of the forum have experience of this medication?   :-[

This med (and others of its class) keep popping up here but there is little evidence of its value for CH. It's common for new ideas/treatments/meds to appear in M.D. literature and then we see docs trying them out before there is a good base of supportive experience.

I suggest that we stick with meds which have a good track record for CH, using them first, and evaluating outcomes, before trying the new ones.

Your doc will recognize the value of this abstract if you print it out for him. It's a major review of the literature and only the last sentence speaks to its usefulness with CH.
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Cochrane Database Syst Rev. 2009 Jul 8;(3):CD007076.
Pregabalin for acute and chronic pain in adults.

Moore RA, Straube S, Wiffen PJ, Derry S, McQuay HJ.

Pain Research and Nuffield Department of Anaesthetics, University of Oxford, West Wing (Level 6), John Radcliffe Hospital, Oxford, Oxfordshire, UK, OX3 9DU.

BACKGROUND: Antiepileptic drugs have been used in pain management since the 1960s. Pregabalin is a recently developed antiepileptic drug also used in management of chronic neuropathic pain conditions. OBJECTIVES: To assess analgesic efficacy and associated adverse events of pregabalin in acute and chronic pain.

[edited for length. Technical data deleted.]

THERE IS NO EVIDENCE TO SUPPORT THE USE OF PREGABALIN IN ACUTE PAIN SCENARIOS.

PMID: 19588419
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That you have had some benefit is good but my overall suggestion is to use the proven therapies.

The mental fog you report has been reported with this class of meds. I would be inclined to stop the Lyrica and see if this condition clears before you assume some psychiatric issue. It should not take much time to see if this med is the source or not.

Hey Friday, welcome to the board, sorry you're hurting, that sucks. :'(

Listen to Bob, the man knows of what he speaks. Have you tried oxygen yet? Sounds weird I know, enjoying a huge level of success with people who are giving it a try. 31 years with the beast here and it's still my first line abortive. Read the "oxygen info" link on the left as it must be used correctly to be effective.

Glad you found us, hope we can help you.

Joe

Many thanks to Bob and Guiseppi for your interesting comments. Lyrica was prescribed by a leading UK consultant neurologist at the Headache Clinic in London. I have an appointment with him on Monday, so I'll be able to raise my concerns with him.  I notice on the net that drug addicts are not to keen on the stuff either, eg "Stay away from that garbage, man.  It sucks and it SERIOUSLY does a number on your memory." etc etc

I have had oxygen for a year but it has little or no effect. Imigran injections, however, are very helpful.

I'll keep in touch. I never give up hope!  :)

I'll keep in touch. I never give up hope

And that's why it'll never defeat you! ;)

Joe

Look, I've dealt with the whole "It's only a () and it can't cause ()" PLENTY of times.

If you feel like a medication is causing you depression, or some adverse reaction you aren't comfortable with?

Be FIRM, Tell the doctor you are going to stop it reguardless of what they say, and they can either HELP you, or you can get a new doctor who will.

There's nothing that says you HAVE to stay on a medication. I've fired doctors who wouldn't listen to me on how bad the side effects were.

This shit has activity IN YOUR BRAIN. Where are the chemicals that cause depression located? In your BRAIN.

It's not that hard to figure out that it could be having negative effects on said brain.

So, just do what I do if the neuro won't take you off of it. Tell them to go screw themselves and find someone who'll listen.

PFDAN
Mystina

Right on Pixie-elf. I'm with you all the way on that. Topomax had the same effect and I told the doc to shove it - in the nicest possible way, of course.

One  more thing...on the oxygen, have you read the link on the left, Oxygen Info? For oxygen to abort an attack your lungs must get only pure 02, no outside air, no exhaled air. Many who have used nasal canulas, low flow regulators, rebreather masks had no success with oxygen. There are sadly some it just doesn't work for, but we're substantially reducing that number by tweaking HOW it's used!

Joe

I am on Pregabalin, soon to stop.  It seems to have no effect on my cluster headaches.  Every few years, I go to a Neuro and see if there's anything that I haven't tried.

22 years and still finding that O2 and sometimes Imitrex are the only ways for me to manage my cluster headaches.

Ray

Guiseppi wrote on Jul 11^th, 2009 at 5:49pm:

One  more thing...on the oxygen, have you read the link on the left, Oxygen Info? For oxygen to abort an attack your lungs must get only pure 02, no outside air, no exhaled air. Many who have used nasal canulas, low flow regulators, rebreather masks had no success with oxygen. There are sadly some it just doesn't work for, but we're substantially reducing that number by tweaking HOW it's used! Joe

Thanks for that Joe. I'm sure I doing things right with the right equipment but I'll double check. The system I use allows a little outside air but I put a flap over the valve to stop it intruding.  Still no joy but I live in hope.

I'm sure that I irritate people with my constant talking about this but I hate to see people suffer needlessly. I spent many, many years suffering in agony because I didn't know, then I didn't pay attention.

When O2 "doesn't work" for a Clusterhead - try it differently.

Oxygen therapy is most effective when you hyper-ventilate with 100% oxygen for a few minutes at a time. This means rapid, deep breathing with nothing but O2 getting in. Only a few minutes is required when the flow rate is high enough.

The number varies per person, but 25 liters per minute is good minimum starting point. It's not not nearly enough for me - I pull the 3 liter bag empty in less than 2 breaths - but it's a starting point for some. Remember: deep, rapid breathing is required to maximize the benefit.

Do some basic research and you will find that doing this is A LOT safer than most of the drugs being used for CH's.

It's up to you, but it depends greatly upon how much you want to stop the agony.

Marc