My new Neuro (old one retired sadly) wants to start me on 600mg of Gabapentin along with my 240mg twice a day time release Verapamil. I said that I doubted the Verapamil was working any more since I now am chronic I guess (cycle started August 2015). She also said if it didn't work she had "a lot of other drugs we could try". That statement alone troubles me...I am a big believer in natural meds and only take what I have to for high blood pressure.

Just wondering if anyone thinks it's worth a try.

Thanks in advance,
Judy

I am on the D3 regimen and in touch with Batch off and on.

Judy, how is the D3 working for you?

Peter.

Not fantastically. I've done loading doses per Batch to get my D25 back up, it fell 30ng in March when I got a clot in my leg, quit estrogen, started blood thinners and my psoriasis flared up. My PCP won't test my D25 again until November since he just ran labs in August where I discovered the drop. From last August to March my hits were off and on with a few PF days thrown in..not perfect but I could live with it. When I dropped the estrogen they went to every hour or so at night. Been doing the liquid benadryl at night with no change there either.
I figure my D25 should be at 85 or so (I hope) 6 days of 50,000IU and on 15,000 since then. Going back to 10,000 this weekend.

Hi Judy,
I haven't tried gabapentin, but I have read posts here stating that it has the potential side effect of zombifying you. Still, some people have had some success. As to the estrogen issues--my attacks took a distinct turn for the worse after I hit menopause. I have no doubt that estrogen had a therapeutic effect on my CH.
~patti

Patti,

Your comments on Gabapenin (Neuronin) are spot on.  I tried it...  It provided a little improvement in the frequency and intensity of my CH, but didn't stop my CH completely.  Moreover, at the dose required to get this response, I felt like I was having a 3-martini buzz so couldn't drive.  Worse yet, my ankles started swelling.  Support hose didn't help so I was prescribed a diuretic, hydrochlorothiazide.  I stopped taking it after two weeks... unacceptable risk-benefit ratio.

Prior to starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors, the only prevent that worked effectively and consistently to stop my CH was a short prednisone taper.

The down-side... I'm chronic so the CH beast came back when the pred taper ended and the pred side effects kept me from taking more than two tapers a year.  At best, it was only a week to 10 day break.

Take care,

V/R, Batch

Hi Judy....before I started a new med I'd investigate an increased dosage of verapamil. At one point I was successfully using 960-1040 per day.. ER did NOT work for me...so maybe try the regular release version. Also. chronic....not sure that made any difference. No longer using as my cycles are  low "volume" now........

Best

Jon

Hi Judy,

I've been on 1200 mg of gabapentin every night for 5 years for nerve pain and it did nothing when the beast came around. I'm also on trazadone for a sleeping aid and that does nothing either for clusters.

Ilndguy

Thanks everyone!

Patti.. I was on estrogen for 20 years with no problem and a cycle once a year for 6-8 weeks. Due to a blood clot in my leg I had to quit taking it...and all hell broke loose! Wish there was a way for us gals to get our estrogen safely!

Jon...Dr won't increase my dose due to my age. I did try the short acting for a month...the hits actually got worse so back to time release I went.

I've told the pharmacy to put my RX of Gabapentin back on the shelf. I have swelling in my feet due to my DVT and the last thing I am going to do is aggravate that. To her credit, the new Neuro did mention that as a side effect and I told her I would think about it.

....now that I think about it....I think we've had the same conversation before!...sorry. What were
you saying about age? I see this guy in the mirror... and I don't connect THAT guy with me...scared myself one time...who IS that? Whoever it is...he's forgetful................................ ::)

J

I know Jon! I have never felt my age (except after a night with only 4 hours sleep) and now know what my Mom complained about. I hate the reminder when I look in the mirror and definitely resent a Dr bringing it up.

My advice...only give a mirror a passing glance and never, never look down into a mirror.

Judy

My doc wanted me to try gabapentin also..it just made me sleepy and slowed my brain down..I couldn't afford to think any slower but I gave it an honest effort with no noticeable help in my cycle or frequency of attacks..but that's just me..might work for you..if I have learned anything in 19 years with ch it is that different meds work for different people..cluster buster methods worked best for me..

Mike, I agree anything is worth a try. My neuro insisted I get a sleep study and voila...sleep apnea! Started on my CPAP in November and not one CH since then. I bless her everyday for insisting I do the study. She says she is pushing all her nighttime CH patients to get a sleep study. She is finding a large percentage of her chronic patients have the sleep disorder.

Hi Judy
Before I got my CH diagnosis, they thought I had trigeminal neuralgia and prescribed gabapentin.  It didn't work at all.  I slept for 16 - 18 hours a day, and only woke up when I got hit.  And it made me feel so dizzy I was afraid to stand up. This lasted several weeks but did ease up eventually. I was still sleepy all the time and still experienced dizziness but not as bad as when I first started taking it.

After the first few weeks of taking it, I thought it was working because the headaches stopped, but of course, no one realised  it was just the end of my cycle.  I kept taking it because I thought it was working, but needless to say the CH came back.