In my latest encounter with a Neuro, I have been given Lyrica, 50 MG 2x per day as a preventative.  Anyone out here in Clusterville have any comments on this drug, good, bad, and/or ugly would be appreciated!

Wishing you well,

Ray

i havent had success with that, so sorry, i am on my second day of trazodone (desyrel) that is what we are trying now! so sorry

Nope: I checked two major sites with broad medical and cluster medical info and didn't even find the name on a search.

I'm guessing the doc is running his own experiment.

Lyrica is the supposed improved version of neurontin.
A calcium channel modulator, primary design use for epilepsy.

The drug is used for a lot of off label treatments, nerve pain etc..

Personal experience fom one close to me says not good. The original neurontin has some potential serious side effects on the phsyce. ie; depression, suicidal thoughts, paranoias.

Lyrica has some of those remaining effects though not as profound. Withdrawal has serious side effects if used over a long period though its said to be non addictive.

I'm sure it wont be the same for all but a scary drug in my opinion.

Ray,

I tried neurontin (gabapentin - similar in chemical makeup to Lyrica), almost 5 years ago... It worked (70% to 80% effective as a preventative) for a for a couple months at 600 mg up to 900 mg TID.   The first side effect was a two-martini buzz at 600 mg.  As I was driving 50 miles round trip to work and home each day on I-95 and I-495, I slid the dosage to late in the day and at night...  

The other side effect was puffy ankles that started during the second month when we upped the dose to 900 mg due to "burn-through" hits.  I had to start taking hydrochlorthiazide to counteract the swelling...  

That got old after a couple weeks and oxygen therapy was working great, so my neurologist at NIH and I decided to stop the neurontin.

Since then, the only thing I use is oxygen therapy at flow rates that support hyperventilation...  It's 100% effective and I start early so my abort times are all under 5 minutes.

Take care,

V/R, Batch

I took lyrica for a while due to back pain.  It did nothing for my ch.    I also took trazadone for depression for a long time and it did nothing for my ch.  I think your dr is trying valid options but I wouldn't get my hopes up.  

I've been taking Lyrica (for the first time) for the past 3 weeks.  So far it's been a mixed bag.  For the first several 2 weeks I was doing 50 mg/day.   The first 5 days or so, I had CHs every other day.  Then I was PF for a week.  The CH fired up again last week Friday, and I had 3 attacks in a 4 day period.  My dosage was increased to 100 mg/day.  I saw my neuro on Monday, and I'll keep on taking Lyrica for the near future.  I have to call her in a couple of weeks with an update on my headaches (earlier if things get out of hand).  Last night I only had a minor attack (I was actually able to go back to sleep without having to take the Migranol I use as an abortive).  I'm hoping that I'm PF tonight.  My neuro wants to keep me on Lyrica for 3 months.        

Lyrica is a mixed bag for CH.  From what info I've found about it online, the makers of it, have wanted it listed as a CH med by the FDA for at least a few years.  But it is still being used off-label by some neuros.  It's effectiveness is a horse a piece.  Some people thing it worked great for their CH, others have said it was useless, and they suffered unpleasant side effects:

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Me - I've suffered at least some of the side effects: drowsiness (mostly gone now), and an occasional depression similar to what I get when I'm on the last 3 days or so of a Prednisone taper.  Why do I continue taking it?  Wellll , lesseee.

1.  I took a 1 week taper of Prednisone when this latest cycle of CH began in mid March, only to have the CH start up a week after the taper was done.  The time elapsed from the Prednisone taper was considered to be too close side effectswise for another round of Prednisone.  Soo, on to another med to stop the cycle.

2.  What do I take?  

A.  I've been on Verapamil non-stop since 2005.  O2 only stops the headaches, not the cycle.

B.  Methergine - NO THANKS!!  I took it for my last cycle in Nov. & Dec. 2008, when my neuro asked if I wanted to try something other than Prednisone.  Figuring it would be nice not to have the blues I always get during the last half of a Prednisone taper, I agreed to do it.  Methergine was L-A-M-E for me.  I took it for a week (ala Prednisone), and it stopped the CH.  Of course within 3 days of finishing the Methergine, the beast came back with a vengeance.  So guess what?  I was put back on it for a month.  In the first week of the 1 month interval, I had CH bigtime.  One of the attacks was awful - a kip 10 that went on for 2 1/2 hours that literally had me screaming.  I had no O2 (never used it - please don't pester me about it; that happened on this board 2 years ago, and chased me off of it until yesterday), and since the attacks occurred only 2 or 3 hours after I took the Methergine, I could NOT use my migranal (or Imitrex for that matter) to stop the attacks, due to the risk of interaction with Methergine causing cardiac spasm (a form of a heart attack).  Yep, it was shades of the old Pre-2005 days when I took Ibuprofen like candy to no effect, and basically suffered through a 1 or 2 hour CH attack.   Some very heavy duty anti-seizure meds (as in take 5 and only 5 of each of these two pills), and Prednisone stopped the headaches.  To add insult to injury, because I was on Methergine for more than a week, I had to have ultrasounds (echocardiograms) on my heart valves, and chest X-rays, to check my heart valves and lungs for damage before and after I went on Methergine (there is a risk of Methergine damaging your heart & lungs of it is used for more than 1 week).   I'm still paying off the $2000 bill (in spite of health insurance) from that financial fiasco.  The last thing I need is another $2000 bill from doing another course of Methergine.  NO THANKS!

C.  That leaves Lyrica.  So, here's to hoping that I have a PF night.

Lyrica was given to me by my Neuro, during my last cycle in late '08. He's a headache specialist and said it may help me get some rest. It didn't help the CH but seemed to help me relax.

The Doc said it does help some of his CH patients. Unfortunately not me. Thank God for O2.

Don

Brief update:

Firstly, thanks for the responses so far.  I've not noticed any changes to the CH but it's only been a week or so.  I've been a grouch lately, but I don't think I can hang that on the meds.

Wishing you well,

Ray

I ve tried two therapies with Lyrica about two years ago.

One was Lyrica in combination with Isoptin.
And the other was Lyrica in combination with Tegretol which is by far
the worst therapy i ve ever been through(and the last one since then).

I don't know if it was Lyrica or both meds,but i was having serious side effects.Extreme Diziness,sleepness(in both therapies) and blanks in thought and oral speech(only in the second one).Needless to say that i didn't find any relief for ch.

I ve an old diary here in which i can see that in first therapy i was taking
300mg(150mg x 2)Lyrica and 360mg(120mg x 3)Isoptin
and second one
300mg(150mg x 2)Lyrica  and 200-800mg Tegretol   :P

I ve never took only Lyrica as a preventative
so take all these for what is worth :)