Hi
I am a newbe; been a clusterhead for 47 years, I am now 52.
As you can imagine I have tried virtually every medication there is.
I have now been given a course of Neurontin (Gabapentin capsules) 300mg 3 doses per day. This is usually given to patents with Postherpetic neuralgia (post-her-PET-ic noo-RAL-jah) which   is a painful condition affecting your nerve fibers and skin. Postherpetic neuralgia is a complication of shingles, a second outbreak of the varicella-zoster virus, which initially causes chickenpox. It is also used to prevent epileptic seizures in pediatric patents.
I would like to know if any one here has any experiences with this medication?
Like most here I hate drugs and do not want to stick any more poison in my system, but it's that time again. I am sitting in my office already crapping myself at what awaits me when I go home. So I turn into Joe Desperate once more willing to try anything to beat the beast!
Thanks

Some have found moderate (MOD - ur - it) success, but for the 9 months I took it, all I got was stupid (STOO - pid).

Postherpetic neuralgia is pretty nasty stuff.  My friend, Greg, had a bout that affected his trigeminal nerve on the right side.  He told me afterward that if this was a taste of what it was like to be a clusterhead, then I could keep it, and welcome to it.

Have never tried neurontin, but some folks here have reported limited success with it.  I'm sure they'll pipe up before long.

Best,

George

Pain doc is trying me on this for restless leg syndrome - she put me on 300 3 times a day; it had me real doppy, but it had no effect on the clusters. I halved it down to 150 3 times a day and the restless legs seemed to go away and I'm not so doppy - the topamax does that all on it's own. The Neurontin doesn't seem to make any other difference after being on it for two months.

Neurontin helped me for a while. It kept the intensity and frequency down. As with most meds I've tried, I had to increase the dosage until I was at 1800 - 2400 mgs a day. Once I found the OTC supplement kudzu, it helped me so much for a while, I was able to taper off the gabapentin and the other prevents I was taking at the time.

Frankly, I don't know how I functioned back then... I still occasionally take it for other neuropathic pain, and it knocks me on my ass.

pf wishes, nani

OK.
Thanks all, (Brew: next time I cut and paste i'll remember to delete the phonetics).
I was with my GP this morning and discussed the effects of Neurontin on the trigeminal nerve, I have decided to trail it as my episode it set to last another 2 weeks.
He has suggested that as a clusterhead I might want to start with a larger dosage.
Let you know what happens in a couple of weeks.

Hi Mike,

I started on the same dose as your Dr has perscribed.  I never got over the 2 martini buzz and wasn't really able to drive safely on it.  It didn't do anything for my CH.  After a month I gave up on it.

YMMV.  Good luck...

-Dennis-

Dr.mike wrote on Apr 28^th, 2009 at 12:59pm:

(Brew: next time I cut and paste i'll remember to delete the phonetics).

I was hoping it would make you smile.

I was looking through my hubby's PDR. Neurontin is labeled as a vasodilator. Why would this be perscribed if we need a vasoconscrictor for CH? Now I'm up sh_t creek. I'm taking it for restless leg syndrome (and it's working for that), but I can tell it's allowing the Beast in the back door to my brain box.

Doc,

Off label use of Gabapentin (Neurontin) works for some Ch'ers some of the time as a prophylaxis/preventative, but burn-through becomes a problem after a few weeks for most and that requires increased dosage to achieve a therapeutic effect.

I tried it for nearly 6 weeks but the side effects... 2-3 Martini Buzz (not cool when driving) and swelling ankles (required too much hydrochorothiazide as a diuretic) so I bagged it and stuck with high flow rate oxygen therapy.  That was 5 years ago and high flow rate oxygen is all I use...  It's very effective if used at flow rates that support hyperventilation.  It's also very safe, far less invasive, and a lot less expensive than other prescription medications for cluster headaches.  

I've got a few years on you and spent the better part of my youth sucking down copious amounts of 100% oxygen flying Navy fighters at very high flow rates... I've a total of over 3000 hours worth of flight time and all was spent breathing 100% oxygen on missions lasting two hours or more in length...  I'm still here.  :)

Ping your neurologist for a prescription for oxygen therapy.

Your prescription should look like the following:

"Oxygen therapy with a non-rebreathing mask as an abortive for cluster headache pain.  Administer at onset of attacks at 12-15 liters per minute for up to 20 minutes per hour, up to 12 times per day. ”

Notes:

1.      Most prescriptions for oxygen therapy must be renewed every year.  Play it safe and have your physician add “Refills for one year” to the above prescription.
2.      Pulse oximetry and arterial blood oxygen are not required for approval of home oxygen for cluster headaches, but you may need a certificate of medical necessity (CMN) signed by your doctor.
3.      Have your physician specify M-size oxygen cylinders for home use and E-size portable oxygen cylinders for work and local travel.  These two types of oxygen cylinders require different types of oxygen regulators.
4.      Obtain a paper copy of this prescription for your records.  It will come in handy if you go on travel and need to order oxygen when you’re away from home.  If you don’t had a copy of the prescription, the monthly receipt from your home oxygen supplier will also work while you’re on travel as it provides proof you have a current prescription for oxygen.
5.      The sample prescription above is written for a maximum flow rate of 15 liters/minute because that is the highest flow rate supported by present clinical studies that medical insurance companies will cover.  Accordingly, that is the maximum flow rate most doctors and neurologists will prescribe.

Although you will need a higher flow rate, 15 liters/minute is far better than nothing and it will get you started.  Having said that, don’t be afraid to ask your doctor or neurologist about writing the prescription for 25 liters/minute insisting that this flow rate is perfectly safe and far more effective.  High flow rate oxygen regulators (≥25 liters/minute) can be ordered over the Internet without prescription.

Take care,

V/R, Batch

I used neurontin with reasonable success. I have very few side effects with it and it cut the number of attacks in half.  Like most meds I slowly increased the dosage to keep it effective. I got to the max dose and finally I became  resistant to it's benefits and went on to a different med. It was however, one of the better meds with the least side effects I have used.  MikeL

Thanks for the info all.

I spoke to my consultant yesterday and am going to hospital next week to report on my trail.
I will post results after the vist so I can add any comments from the Nueros.

Please remember that any meds I try are ordered via my GP and my trails are supervised,  I would never take anything without seeking medical advice first (even the naughty stuff).

Batch: thanks for the O2 info, I have been using highflow O2 for 25 years now, I am in the UK so for me it is very easy to get. I have a room set up at home with 2 large cylinders and tubing, I use a direct flow system (tube down my throat) as it the most effective for me. I have found that O2 is the only thing that has any effect. When in the US my cousin is a doctor so no problems there either.

How did you get into the Navy with CH? At age 18 1 was turned down by the British Army for having CH, this was after they specifically requested that I join, they even presigned me...then came the medical and the rest is history...

I have tried loads of diffrent meds, (see the my story post in the getting to know ya section) and am always willing to try something new.in the hope that 1 day I might find something that helps. Hence the trailing of Nuerontin.

Mike

Mike,

I retired from nearly 25 years of Naval service in 1991 and didn't have my first bout with cluster headaches until 1993.  Like most of us, the first year of episodic attacks was written off as sinusitis.

Hang in there and keep sucking down O2...  If the flow rate is high enough to support hyperventilation, it's the most effective and safest abortive for cluster headaches.

Take care,

V/R, Batch