Gabapentin

[MoxieGirl]

Have just been prescribed Gabapentin by my GP to see if it'll help reduce my migraines. Wondering if anyone has any experience with it or advice?

He wanted to give me Topiramate (Topamax), but I said I'd already played that game once. Granted, I could do with the weight loss benefits of Topiramate, but the side affects are pretty extreme for the small weight loss it helps with, and my clusters got worse while on it. 

I'm not busting at the moment, so not worried about Gabapentin clashing with anything. 

Would be great if it caused weight loss. :( 

MG

[Dallas Denny]

G'mornin MG!

From every thing I've read over the years gabapentin (neurontin) seems to be very effective for nerve pain from MS and fibromyalgia but I've seen very few glowing reports about efficacy for clusters and many reports of terrible side effects........I don't recall reading anything at all about its use for migraines though.  I do know that it's a drug that you absolutely must taper off of very slowly if you try it and decide to DC it!!

DD

[MoxieGirl]

Hey DD,

Yeah, I think it's quite similar to Topiramate in a lot of ways, which I did come off of way to fast and was suicidal for about 6 weeks. 

The doc said to take 1 pill in the evening for 3-4 days till my body can tolerate it. Then, 1 in the morning and 1 in the evening. Then, 1 3 times a day, eventually increasing to 2x 3 times a day, allowing 3-4 days between each increase. And to come off it at the same rate.

The documented side affects range from mild to extreme depending where you look.

Like Topiramate, it's an epilepsy drug being used for head pain, so not ideal. I'm probably going to try it as I'm getting 20+ migraines a month, and need to do something. Can bust for awhile either.  I'm tired of only have 2 -3 days a month pain free. 

MG

[Rod H]

I've had some luck with gabba in reduction of the number of headaches. Also the side effects weren't all that bad compared to lyrica which is a new version of gabba. It's definately a better drug then topamax but it wasn't a silver bullet to the beast either. It's worth a shot to see. Someone once said everyone here is different. 

[CHfather]

When my daughter was inaccurately diagnosed as having trigeminal neuralgia, she was prescribed Neurontin (gabapentin).  It helped. For her, the side effects were unacceptable.  Dr. Goadsby, the CH expert, says that gabapentin can be an acceptable CH preventive (he says up to 3600mg/day).  I'm assuming that all this would also apply to migraine. 

Good luck, Moxie!  No chance of getting Aimovig from your generous NHS???  https://www.nbcnews.com/health/health-news/new-drug-uses-antibodies-stop-chronic-migraines-without-side-effects-n866696

[xxx]

Hey MG,
Gabapentin (Neuronitn) comes with side effects ranging from a 3 martini high to downright nasty psychotic moods depending on the dose.  I tried it for two weeks then burned the bottle...  It wasn't worth it. 

Migraineurs respond favorably to the anti-inflammatory regimen, but at higher vitamin D3 doses and higher 25(OH)D serum concentrations (15,000 to 35,000 IU/day vitamin D3 and a 25(OH)D serum concentration between 100 ng/mL and 140 ng/mL). You'll need to double the magnesium dose so split it 400 mg AM and 400 mg PM to avoid osmotic diarrhea. Taking a good vitamin B complex a day is also essential. 

Be sure to work with your PCP on vitamin D3 doses this high as you'll need labs for serum 25(OH)D, calcium and PTH monthly until you reach a stable vitamin D3 maintenance dose.  As long as your serum calcium remains within its normal reference range and your PTH is at or near the low end of its normal reference range, there's no vitamin D3 intoxication/toxicity so your 25(OH)D serum concentration doesen't really matter.  For reference, I've run my 25(OH)D serum concentration up between 188 and 200 ng/mL.  My serum calcium remained within its normal reference range and my PTH was at the low end of its normal reference range so my PCP went along with doses this high.

There are additional supplements required to help prevent migraine.  They include 1000 mg/day Co-enzyme Q-10 (CoQ10), 1000 - 2000 mg/day Turmeric (Curcumin), Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day and at bedtime, or if you need to drive during the day, take 50 mg when home for the day and 50 mg at bedtime.  Taking 1000 mg vitamin C every 4 hours during the day along with the Diphenhydramine is also helpful. 

It shouldn't come as a surprise, but oxygen therapy with hyperventilation can be effective in aborting a migraine headaches.  Find my post on the "Redneck Oxygen Breathing System" as it explains hyperventilating at forced vital capacity tidal volumes for 30 seconds with room air followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds.  Keep repeating this sequence until the headache pain is gone.  Where CH aborts with this method of oxygen therapy require an average of 7 minutes... migraine aborts average 10 to 15 minutes.  Be sure to start this method of oxygen therapy by drinking a big glass of ice water with lots of ice cubes.  (I've found doing this works as well as slamming a can of Red Bull and it's a lot less expensive.) Drinking a minimum of 2.5 liters of water a day is also a must.

Diet is also an essential consideration for migraineurs.  No sugars of any kind including soft drinks and fruit juices.  No wheat products, bread, pasta, pizza or grain oils.  Good fats/oils include organic butter, olive oil, avocado oil and my favorite, extra virgin coconut oil.  You can eat lots of NON GMO organic green and yellow veggies, onions, mushrooms, fresh ginger and one serving of fresh fruit a day (Blueberries, blackberries and dark red grapes are an excellent choice).  Eat organic free range meats, poultry and eggs.  Try to eat a serving a week of wild caught fish, clams or oysters.  Avoid shrimp and prawns as most are farmed so contain large quantities of antibiotics.

My wife was a 20 year episodic migraineur until she started the anti-inflammatory regimen at 15,000 IU/day vitamin D3 in December of 2010.  She hasn't had a single migraine since.

I don't put out much info on taking the anti-inflammatory regimen with vitamin D3 to prevent migraines.  I made a few posts about the results of my study doing this on Facebook...  My access to Facebook was denied within 24 hours...  I haven't been back since...  Big Pharma sponsors at Facebook don't like info like this on vitamin D3 preventing migraines getting out after they've spent $400 to $600 million to develop and test monoclonal antibodies as migraine preventatives...  but that's another story and much longer post.

Take care and please keep us posted.

V/R, Batch

[DjinnError]

Hi, I've read alot about the negative side effects but to each there own right. I'm quite new to the forums but thought I'd give you my two cents about it. My PMD prescribed me Gabapentin about 2 months ago because my CHs were becoming very bad, and I was told to start with 900mgs a day (300mg capsules spread out 3 times a day) it took about 2 days to kick in but it saved my life in a way, my side effects were bad diarrhea for about a week and no appetite. But to me that was a small price to pay compared to about 4 CHs a day. Its 2 months later and I'm currently taking Verapamil as it is seeming to do wonders right now. I just stopped Gab 3 days ago due to getting Verapamil now but before I stopped I ended up having to up my dose to continue getting the benefits of Gabapentin. But if I'm being honest, try it and see what if any side effects, and if there manageable, go from there.

[Racer1_NC]

Gabapentin...I took it once cycle.....I called it my "Zero F**** Given" pill. Did dookie for clusters but I was in the best mood....didn't give a damn about anything. Don't worry, be happy come to life.

Kinda freaked me out.

[MoxieGirl]

Hi Everyone,

Thanks for the input. 

I tried one capsule of Gabapentin Sunday night before bed. Felt no effects what so ever, didn't even make me drowsy enough to go to sleep. I chased it with a bit of cannabis, which always helps me get to sleep - which is why I have it. Did some research first about the interaction of the two drugs, and everything said the reaction is pretty mild, cannabis just makes you feel a bit more drowsy/dizzy than without it. So I chanced it.

Next morning, couldn't wake shake myself awake till after 10:00. It was well after 11:00 before my head fully cleared and I didn't feel like I had a London fog going on in my mind. I didn't take any last night, and feeling really low today. My mood had been very good the past few weeks, and I've been quite optimistic. Dark thoughts today, don't want to get out of bed. 

I'm not going to try a 2nd dose. I haven't trusted doctor prescribed remedies for headaches, clusters and migraines since using Topiramate, and this just confirms that feeling. I don't need this fog or this depression. Would rather deal with the pain.

Batch - I am working on improving my diet, although don't expect it to be a silver bullet for my migraines. Migraines run in my family, and although I've never been an amazingly good eater, my sisters are, and it's made no difference to their migraines. I may also explore the Anti-inflammatory Regimen again, but I detest taking handfuls of pills every day. Although, I would like to double check, now that I'm 100% clear of other doctor meds, that it was indeed the high dose of Vitamin D3 that turned my urine to acid. That'll be an entertaining experiment I'm sure.

In 2011, I had 257 cluster headaches, 276 daily headaches and 42 migraines. That's a total of 575 headaches for that year! At the end of that year is when I started busting, and the very next year I had 3 migraines - for the entire year!

Last year (2017) I had 35 clusters and 90 daily headaches but 179 migraines for a total of 304 headaches (and that was my best year since I started keeping records in 2010).

If I can just get my migraines down to single digits again, or even < 20, my overall headache total would be amazing! Based on the first 6 months of this year, and projecting out to the end of the year, I expect to have:

• 25 cluster headaches
• 29 daily headaches
• 113 migraines

So it is really the migraines I need to tackle. It would be fantastic to have a year with less than 100 total headaches. I could, theoretically, even get that down to < 60. I'm not sure I can imagine life only having 1 headache a week instead of 1-2 a day. 

I want to bust again, that seems the most effective thing I've done for migraines (and clusters). But, my housemate, who has a terminal disease, has carers in the house 24/7, and I'm not sure it would be wise growing the necessary ingredients for busting while they are here, let alone applying the remedy. Plus, I'm frequently needed to help out with her care, and couldn't do that if I'm out of my head. But, I've thought about getting everything ready so that when she does eventually lose her battle with Motor Neurone Disease, I'm ready to bust. 

MG

[Cast Iron]

Its been a while, but for good reasons, 112 reasons!

Long story short, gabapentine is working fo me, throwing my chronic CH into oblivion.

The long story is that for the last few years I turned into chronic with heaps of medications trying to control >200 hits a month. My neuro suggested to take the Indomethasine to see if I could positively react to this and diagnose paroxysmale hemacrania. Went all the way up to 275mg but eventually after month of severe fatigue and other side effects we concluded I did not respond to this as I should be. Slowly decreasing the indomethacine, an old spinal injury came back into my life with constant pain in my lower back and leg. I was prescribed tramadol as a pain killer to get through the day and night, but oh boy, this did not work with my other CH medications. I couldn’t go to the toilet for days in a row, more fatigue and more importantly the number of hits increased, although not the severity. Had to stop the tramadol and eventually requested another type of pain killer, which was the gabapentine. Still I used the O2, verapamil, sandomigran, naratriptan, suma’s and now took another pill. After the first one in the morning, no hits during the day and night…that’s odd…well must be a coincidence. Three days later the hits disappeared completely, and I was only taking 300mg in the morning and evening. Then I started counting, 10 days, 20, a month, 3 months, and today 112 days without a significant hit. Happy days cause I am not so anxious anymore when the next hit will come, if I can go for groceries without my O2 and suma with me, or not. 

Every now and then, the cluster bunny comes around and shows it ugly face, a little O2 does the trick, but makes me realise it is not gone. It is well suppressed with the gabapentine, somehow there is a little chemical component inside that I needed. Neuro does not understand this as there is little medical evidence for this, but looks at me with a smile. He now advises his other patients in his top5, actually 4 because I am number 5, to take gabapentine to see if it has the same results as I have.

Should you not have tried it, I can recommend it, but always be certain to consult your neuro first as this is an anti epileptic also used for neuropathic pain.

Alex

[Bejeeber]

Wow what a dramatic, positive response to the gabapentin, AKA neurontin. CONGRATS!

Especially surprising/unusual is how it seems to have taken effect on the first day.

Are you still only taking 600mg a day?

My experience with gabapentin was it took a good many days to kick in, but when I got to a high dose, coinciding with a high ECH cycle, it cut the frequency of attacks in half. That in turn allowed me to abort all attacks as I rode the cycle out, so it was of real help (since that cycle, I have found vitamin L to have restored busting effectiveness for me, so no need to go back on the gabapentin).

While you swear by it, some do swear at it. I get the impression it could be a drug that we find ourselves having especially widely varying individual responses to.

When I was on it I could feel that I was on a drug, kind of buzzed-ish, but hard to describe. I kind of enjoyed it, but not like I wanted to stay on it forever. My appetite became unusually ravenous.

According to sources including this from NIH (I've only skimmed it) "it is crucial to raise awareness of gabapentin as a potential cause of depression, aggressive behavior, and suicidal ideation"

Suicidal ideation in bold print, because it is a bizarre potential side effect that others have noted here, sometimes referred to as a "reverse survival instinct", and can be experienced even without any co-occurring depression or other distress (!!!). I caution anyone on gabapentin to watch out for this, and to resolutely keep in mind it is the drug talking - set any such thoughts to a firm ignore!

[Cast Iron]

Yes the neuro was kinda shocked because he had never seen this before, notably only 600mg a day has the positive effect on me. I heard that some people had to go all the way up to 3600 without a decent effect, but maybe that level does bring the side effect of being suicidal, who knows...I have no side effects what so ever at 600mg/day, but echo that I have to watch my appetite. Apart from that I have found no other tendencies other than slowly picking up my life again after so long. Over the last months I have been able to slowly decrease and stop some of the other medications. The sandomigran is gone, and the verapamil is only 50% (720 to 360), where I have a feeling I could stop this too eventually. I do realise two things: I am lucky and tomorrow everything can be different, so cherishes each day!