Gabapentin - personal experience/advice

Been on this since sep. so 5months now. I’ve increased the dose twice from 300mg a day to 600 to 900. The last increase was dec and it took me most of the month to get back to my base “dizzy” level. I’ve been sticking to the migraine diet and trying to eliminate stress, I’ve even moved country to help with this. I know we’re all different but could someone reaffirm that it takes this long (if not longer) on this drug to get us feeling better. I’ve just been on a day out with family and felt completely in another world. I’m finding it hard to see the changes (if there are any) for the better.

In my opinion (and only my opinion) you should give a med 6-8 weeks- if you see no changes for the better, I would stop it. You may not even be at a high enough dose to work though- what does your dr. think is a therapeutic dose?

— Begin quote from “sarahd”

In my opinion (and only my opinion) you should give a med 6-8 weeks- if you see no changes for the better, I would stop it. You may not even be at a high enough dose to work though- what does your dr. think is a therapeutic dose?

— End quote

I’m not 100% sure what my dr. thinks is a therapeutic dose. We were going to increase as was manageable for my dizziness as he did say it would get worse before it gets better and it would take a long time. So. Personally compared to others 900mg a day is v.low, most people get up to 1’800 to 2’400 a day but 900mg could very well be the healing dose for me. Who knows? But considering that I wasn’t going to be able to see my dr. for an extended period of time (as I’m living in another country for now)- we were sticking the 900mg dose until I return (5months). However, I’m starting to think that I should have some improvement by now, no? I was wondering how long it took for other gabapentin users to see an improvement?

Hi there,
I’ve just checked my diary and this is what I found:


6th Mar 2012: So, starting today, I’ve upped the Gabapentin from 600mg to 900mg per day. According to the schedule we have set, I will
stay at this 900mg dosage for 4 weeks, and if required, raise to 1200mg after that, etc…

Mon 21st May 2012: Have been at Gabapentin 1800mg for 7 weeks now (along with 80mg Topamax). Things have been going really quite well. Have
generally seen a steady improvement, and there have been times where I have ‘almost’ been able to forget about the
dizziness!

So, I steadily increased by 300mg at a time, from 600 in March to 1800 in May, and after 7 weeks at 1800mg felt really good (was also on 80mg Topamax).
Hope this helps,
Tony.

tony how’s it going on the pizotifen and gabapentin combo?

— Begin quote from “sarahd”

tony how’s it going on the pizotifen and gabapentin combo?

— End quote

Hi Sarah - it’s going OK, really, onsidering I’m also withdrawing from Topamax at the same time! :wink:
I’m now on only 15mg of Topamax per day, and should be off it next week.
I’m also at 1.5mg Pizotifen and 2400mg Gabapentin. I’m hoping that the any Topamax-related imbalances/disturbances will be over in the next few weeks, and things will settle down properly. What I find frustrating is that I seem to pass through various stages of feeling really quite good, and then seem to lose it again.
I had a period of real success with the Gabapentin at 1800mg, and then seemed to relapse by overdoing things (apparently!).
The Piz also worked like a dream in the very early days for me, and I unfortunately had to come off it for a while and when I returned it had lost some of its magic.

And now, the Pizotifen initially seemed to steady the ship again, no doubt about that. But since then, I’ve decreased the Toapamx a few times, and that must result in a changing chemical scenario in the brain, I guess. So, I’m doing OK - not great, but not at all bad - definitely steadier and less dizzy, and without too many ‘attempted mini-spin attacks’, as I call them. It’s just a shame that the Piz slaughters me in terms of tiredness, but that is very slowly improving, I think.

Fingers crossed, that when it all settles down properly after the complete Topamax withdrawl, things might improve even more!
How’re you doing?
Tony.

Do you take gabapentin durnig the day? Do you find it sedating? I’m not doing great- I am 2 weeks into Norvasc and feeling worse- I really don’t want to sit through another 6-8 weeks of something that again does not work. Ugh. I hope that once the topamax is out of your system things will settle down again!

Hi Tony,

Thanks for your response, did you find that each increase made you worse? Each time I up the med I am out of it for about a month. I’m keeping a daily symptom diary so I have something to go back to the doctor with in April. Each time I level out from the med increase I tend to feel much better but then always relapse. Starting to think this may not be the drug for me, or perhaps I’m just not on a high enough dose. I’ll let the doc be the answer to that one. Loosing hope very quickly.

Are you still on both pizo and Gaba? How are you doing now, a year on?

Trish

— Begin quote from “sarahd”

Do you take gabapentin durnig the day? Do you find it sedating? I’m not doing great- I am 2 weeks into Norvasc and feeling worse- I really don’t want to sit through another 6-8 weeks of something that again does not work. Ugh. I hope that once the topamax is out of your system things will settle down again!

— End quote

Hi Sarah - I take gabapentin in the morning, lunch and at night. St first it was a little sedating. But nowhere near as bad as pizotifen was.

crazymeds.us/pmwiki/pmwiki.p … /Neurontin

read the above for more info on Gabapentin/Neurontin
Neurontin’s Dosage and How to Take Neurontin

Given all the different things for which Neurontin (gabapentin) is used, I’m not about to cover all the possible dosages. I’m just going to cover the FDA-approved applications in adults. For everything else it’s between you and your doctor.

For shingles start with 1 300mg dose. On day 2 take your 300mg dose two times a day. On day 3 take it three times a day. Then work your way up as required to a dosage range of 1,800 to 3,600mg a day divided over three to four doses a day.

For epilepsy Parke-Davis recommends you start right out with the therapeutic dosage of 900mg a day, divided over 3 300mg doses. What the hell? This is an add-on medication folks, how about a little titration? My advice is to follow the schedule for shingles. Give your body a chance to get used to this stuff. The effective therapeutic range is 900 to 2,400mg a day, in doses taken three to four times a day. You shouldn’t let 12 hours pass between doses
How Long Neurontin Takes to Work

It should start to do something for you a couple days after you reach 900mg a day. But because of the whole bioavailability issue it may not be until you’re somewhere in the range of 900–1800mg a day, presuming it will do anything at all for you.
Half-life: 5–7 hours. It’s out of your system in 2 days.

§13. Days to Reach a Steady State
Steady state is usually reached two days after you’re taking Neurontin at least three times a day

some more info for those interested in Neurontin/Gabapentin. My personal belief is that if a med is going to work for you, it will do SOMETHING fairly quickly. Maybe not get you running a marathon, but you will feel SOMETHING…and usually a steady increase of getting better. That is from Dr. Hain and also Dr. Jensen, a psychiatrist/neurologist and self acclaimed Brain Che,mistry expert.

I know that Dr S seems to love Gabapentin but I have yet to hear of many people having much success on it. I asked a similar thing on here a few months back and nobody said ‘yes Gabapentin is really helping me’. From what I have read on this forum, of the anticonvulsant medications for migraine, it seems that Topamax generally has the best results with a number of people reporting big improvements on it once they get past the initial horrible side effects x

Jem,
I know of a couple on here that were helped with it. Maybe they just didnt’ see the thread? Plus, I’m sure if the good doctor is treating hundreds or even thousands of patients, and that is his main med go to, the numbers are probably pretty high that it’s working or he wouldn’t rx it.
We just see the problem children on this forum lol
Kelley

Yes Im sure you’re right Kelley, I would just expect a few more people here to report on it being a real help to them. Maybe some more will come out of hiding and report their success on it! x

— Begin quote from “sarahd”

Do you take gabapentin durnig the day? Do you find it sedating? I’m not doing great- I am 2 weeks into Norvasc and feeling worse- I really don’t want to sit through another 6-8 weeks of something that again does not work. Ugh. I hope that once the topamax is out of your system things will settle down again!

— End quote

Hi Sarah,
I take 800mg in the morning, 800mg at lunchtime, and 800mg at night. I find it nowhere near as sedating as the Pizotifen - that really just floors me, like a tranquilizer or something! I looked at my notes, and saw that Gabapentin did make the dizziness different/worse for a while, but then I had that good spell, after 7 weeks at 1800mg…! I know it’s difficult, but 2 weeks might not be enough yet to see how things will be…? Also, I wonder about the “give it ‘x’ weeks at a therapeutic dosage” statement - the problem is finding what a ‘therapeutic dosage’ is for each of us! Thanks for you best wishes - I really hope things work out for you too!
Tony.

— Begin quote from “waspcharmer”

Hi Tony,
Thanks for your response, did you find that each increase made you worse? Each time I up the med I am out of it for about a month. I’m keeping a daily symptom diary so I have something to go back to the doctor with in April. Each time I level out from the med increase I tend to feel much better but then always relapse. Starting to think this may not be the drug for me, or perhaps I’m just not on a high enough dose. I’ll let the doc be the answer to that one. Loosing hope very quickly.
Are you still on both pizo and Gaba? How are you doing now, a year on?
Trish

— End quote

Hi Trish,
I usually find that a dosage increase ‘stirs things up’. Sometimes it changes the nature of the dizziness, so that it feels a little different, sometimes it makes me tired, etc. I did feel much better after 6 or 7 weeks at 1800mg, whereas I hadn’t felt much previously, so perhaps it’s worth hanging in there…? As for me with the Gaba and Piz, I think I need another month to report my findings! :wink: I’m still weaning off the Topamax, so that might well be affecting things also. Generally I’m doing OK - just suffering from extreme tiredness from the Piz. I really hope things work out for you - when are you seeing the Doc next?
Tony.

[Hi Kelley - thanks for the Gaba info - that’s always really helpful. I know you’ve always said that the right drug will fit ‘like a key in a lock’ and that something positive should happen fairly quickly. I definitely had that with the Piz. Didn’t have it with the Topamax though, not at any stage - that drug fought me every step of the way. And with the Gabapentin, well, I found it pretty easy to take compared to the Topa, so who knows…? I’ve been on the Gabapentin for almost a year now, at 2400mg, so perhaps once the Topamax withdrawal effects wear off, and the Gaba and Piz combo settles down, who know…? Thanks again for the info. :slight_smile: ]

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Thanks Tony, That made me feel like I just need to hang in there and see what the higher doses do to me, when I next see the doc in April I’m sure that’s what he’ll suggest. Only 2 months time, unless he sends prescriptions via fax lol. It is quite nice to have a break from the increases - I can actually tell if the drug is doing anything at the level I’m on now and it’s not enough. However I really can’t tell if it’s natural fluctuation after levelling out of med increases for 3months or if it is actually somewhat better. I can’t be at the optimum dosage for me yet. Your information has helped calm me down a bit! Thank you so much - and yes, each increase changes the origin of the dizziness almost :slight_smile: hope weaning off Topomax goes as smoothly as possible for you.

Kelly, thanks for the information. I definitely leave it more than 12hours sometimes when I oversleep :confused: very bad. Good to read! Also a steady state after two days on the dose 3x a day, who are they kidding!!! But knowing that the therapeutic dose is from 900- 2,400 is promising. I’m on the edge of getting there!

Jem! I can see why he does it though, Gaba seems to be able to treat pain, sedate upcoming spasms and be a general wonder drug - covering most reasonings for why migraines occur. So it can heal and prevent at the same time? I’m not sure which part of the brain chemical wise it works on though. I know muppo had success with gabapentin - not sure at what dose think it was 1800 but I think she had relative success on lower doses as well. Dr.S did keep saying it’d get worse before it got better though… I just feel at a standstill because nothing can happen whilst I’m away.

And Sarah - keep going! 2 weeks is not enough. I definitely didn’t give ami or nori proper trials. I wish I could have withstood the SEs. But I’d never taken medication before in my life before this condition so didn’t expect to feel so ill on the meds! If you can withstand it, keep strong xx

Hi Waspcharmer,

Honestly in my opinion it shouldn’t take so long to get back your baseline dizziness- if you give each drug 6 months +, you may take years and years to find a good drug. I say this because I wasted 6 months on gabapentin because it was also helping my chronic pain- I could have trialed another drug or 2 in that time period. If it takes you that long to go up and you still don’t see any improvement, it may not be the drug for you. I am pissed at myself for wasting that much time and i wouldnt want to see someone else do that too.

Trish didnt know u were feeling this bad on GABA really thought u were seeing improvement. This sucks I would stay at that level till u see Dr S now he’s the expert.
I’m stabilised now on Pitzotifen And ami at the moment could not see the light a few months ago but it helped within weeks which is why I would think yours should be doing something by now x

I hear yah Sarah! I don’t want to be wasting time either. 26 this year and into my 5th year of this crap. I’ve been pretty teary about the whole saga recently. The only reason it’s taken so long on this drug is that I’m MIA lol - out of the UK til April. I didn’t realise it had been this long and also I kept is airing for the ‘right time’ to increase my doses as I couldn’t be out of it for a whole month with travelling, my brother’s graduation and Christmas gatherings.

Hey Don! Looking back at things I had an okay month in Nov. a few good days before increasing finally in Dec - but then the whole of Dec was pretty much wiped out, I’m fed up of not being me! I come across as a moody bitch when really I’m just too dizz to concentrate on conversation one on one - how ridiculous is that! Jan I’ve already had 2 relapses which have lasted a week each. I can’t keep living in this uncertainty. I’ve emailed Dr S and see what he comes back with. If there’s a way he can send prescriptions over by fax then I can continue to increase. I don’t expect to see any results from GABA until the higher doses so I just want to get to them already - but it takes so long to level out.

Hope you’re doing okay x

Ok any news yet from him?
Good luck honey xx

Nope, he’s on annual leave/holiday for a week, should hear from him soon. I doubt he’ll have an issue with increasing the dose - but would like to see what he thinks about the whole thing. It taking so long.

How you doing yourself Hun? xx