I've been an episodic CH sufferer for years.  Misdiagnosed for years (I'm sure anyone reading this can relate).  I've tried everything under the sun (holistic or otherwise) with the only result being either a temporary lessening of one nighly attack followed by the second attack being a doubled up monster; being a total zombie with only 1/2 the pain reduced; or no effect at all.  Until I found Lyrica.  However, my insurance company, Blue Cross, denied coverage saying it had only been approved for diabetes-related neuropathy and fybromyalia.  I sent in a 96 page appeal (neurology reports showing I had tried and failed all other treatments) and lost my appeal.  Why?  Because the drug is expensive, still under a patent, and BC doesn't want to pay.  Ironically, when Imitrex first came out, they denied that treatment as well saying it had only been clinically proven for migraines, not CH.  I didn't care about that appeal because I despised Imitrex and it didn't really work for me.  The minute the patent expired on Imitrex, BC was willing to pay for it.  (Evil, evil, evil, beauracrats overriding physicians).  I now have to pay for Lyrica.  Whatever.  I'd do anything to stop a spell but I'm curious to know if anyone else has had this problem?  I just started a spell last night and will be calling my neuro first thing Monday morning to get a prescription. 

Wow Kristie, I'm sorry your insurance co. is giving you such trouble. My stepmom was a claims adjuster for them for YEARS and had to routinely deal with this crap, so I will be happy to pick her brain when I visit next week.  Can't make any promises, but she may have some insights on the process.

You didn't ask--but my reaction to  your story:

1. 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. --BJ]

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

PMID: 19588419

2. If Imitrex (injection??) did not help this may be ONE sign that you may not have Cluster. There are a number of cluster-like disorders which mimic Cluster. A clue  being that the meds which are normally effective for Cluster either do not work or are erratic in effect.

So, are you seeing a headache specialist or a doc who has deep experience with headache? Most docs, even neurologists, lack good education/experience with Cluster.

Hi guys.  Thanks for the resonse.  Apple, YES, by all means, pump your stepmom for information.  I'm mostly curious to know if once the drug goes generic I'm then allowed to have it. 

Bob, I'm definitely a CHer.  Diagnosed by my MD 20 years ago and immediately sought out the best neuro I could find (Kudrow in Los Angeles).  He put me through a battery of tests (sleep deprivation, kinesiology testing, MRI, brain scan) and the diagnosis was CH (which is what he suspected to begin with).  When he went to a cash-basis only, I then sought out the 2nd best neuro I could find and was treated by her for years until she moved.  Now, I'm back to Kudrow tomorrow.  The Imitrex was okay -- but I had that dreadful side effect of feeling like I was having a heart attack.  Plus, while it lessened the 2:00 a.m. attack, it seemed to just put the beast back in the cage until 4:30 a.m. when he came back with a doubled-up energy and the second attack was far worse.  If I did my 2nd allowed dosage at 4:00 then the 6:00 am attack was a tripled up beast.  So I don't use Imitrex.  Zomig works a little better in lessening of the pain if I have to do the abortive vs. preventive route.  After reading posts on this site, I've seen a few people say Lyrica worked once, but not subsequently.  So, not sure it will work again.  But I'm hoping Kudrow has some new remedy we can try (personally, I'd opt for an induced 6 week coma). 

I'll bow to Kudrow's alter and just wish you much success!

Funny you should mention bow.  It's kind of required when you see Kudrow.  And I mean that in a positive way.  Quite frankly, if he can make this pain end today, I'll clean the toilets in his office.  For free.   :)

Hi

Instead of taking Lyrica, Magnesium in right doses has shown to have similar effect on nerve pain. Magnesium is a good alternative, with no side effects.

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