I posted about a year ago on here about my 11 year journey with NDPH when I was quite upbeat about life - studies going well and generally feeling rather rosy about future prospects. I moved house at the start of the year and started a job which has been going really well with the exception of the pain which has got considerably worse. I got really scared that I would actually have this headache forever and that it would be something I would always have to deal with so I made a decision to revisit my GP and get referred to see a specialist consultant as I discovered that they have some good headache specialists in our local hospital.

The consultant was really forgiving and it was really nice to be taken seriously, unlike my experience with other consultants in the past. In the past, I've always been rather reluctant to accept drug-based therapy, particularly since lots of them induce pretty undesirable side effects, as many of you know(!) - finishing studying I really didn't want to run the risk of losing the ability to think straight. Nevertheless I bit the bullet and we decided that I should give Gabapentin/Neurontin a try. To be honest, I was really very scared taking them, particularly since a quick google on people's experiences of side-effects turned up some pretty grim reading. However, after reading some people's positive experiences of Gabapentin here, I decided that I really had nothing to lose.

I've been taking them for three weeks now, up from a dose of 300mg/day to 900mg with a target of 1800mg - so far with no side-effects (so far!). Whilst i don't want to tempt fate, I'm so excited that the edge has actually been taken off it - in fact, i can't even begin to say how happy I am that I have given this drug a chance. I know that this is easy to say, considering that I haven't experienced any yet, but in hindsight I really wish that I hadn't googled around for side-effects, trying to scare myself off starting them. I was prescribed the same drug a few years ago but didn't take it for fear of side effects - can't believe how much lost time fear creates. Having said this, I'm a bit apprehensive about increasing it up to 1800mg - does anyone here take this dose at the moment? If so, are side effects more noticeable at higher doses?

Look forward to hearing from you,

David

The good thing about the cognitive side effects of this med (according to my neuro) is that it is temporary while you take the med. It isn't doing anything permanent. Since it helped with my pain and I can't work anyway right now I didn't mind being a bit stupider. I am probably going to go back down on my dose again because of my weight gain and I am not sure that the higher dose is any more effective for me than taking a bit less.

You can always try going up to 1800mgs and if you have trouble at that dose tell the doctor that you need to drop back down to where you are now. There may also be a period of adjustment when you first change doses where you get sleepy and stuff again (maybe it didn't do that to you the first time...it did me).

I have always feared the side effects. Until....our pedi-headache specialist/neurologist told us to not treat would be potentially dangerous. You have to try..if the kid sees ya not trying, they lose hope and some will lose all hope and you end up with a suicide. I do hate the side effects of some of this, but her stability means so much.

Me again! Funnily enough that's the next drug they want to give Ric but the tried pregablin and is dubious as to whether or not this will help. He's tried loads the worst being nuelin and effexor. Is it helping?

Jill

Post edited by: MaryR, at: 10/14/2008 15:46

At the moment Ric is trying to beat the ward record for being on lidocaine infusion been on maximum dose for 2 days now and hasn't completely lost it yet. No idea what this means but so far no effect on the alloydinia and headache. I thought after MHPI that your headaches were much better?

Best wishes

Jill

Best of luck to him with the lidocaine thing...sounds scary to me, but then I don't usually do well with meds in high doses...I can't imagine beating a ward record for anything. If it ends up helping though it would be totally worth it.

sorry, I am getting mixed up. Mid morning they told Ric that he had the maximum dose they could legally give him and it only made him a tiny bit woosy. Anyway infusion finished he discharged himself and rang me to take him home. He is terrbily upset and frustrated and has gone to bed with an even worse headache and just gabapentin to start taking. He may have left too early but is just furious that nothing came out of it and the doctor hasn't given him a follow up appointment until February 2009! It's really hard to know what to do next.

Thanks for caring

Jill

I can understand being frustrated and upset since yet another thing didn't work and he doesn't expect to get anywhere with the Gabapentin. From my experience the gabapentin is worth a try since it might help some even if it doesn't do a lot...at least it helps me some. Depending on what dose he is supposed to take he may have to work up to it (though it sounds like he tolerates meds better than me). Four months does seem like a long time out though. It might be standard, but it feels like a long time to wait. I hope his headache level goes back down at least to his normal level soon. It is terrible to hope to come home better and end up feeling worse. I am sure it is really hard on a parent to have to watch it too. I hope things get better for both of you soon.