Update on Gabapentin and advice please

[Eyesnlegs]

Hi Guys,

Just back from my hols in sunny Devon, UK (not) had torrential rain on 2 days - the rest were ok, but it did make me realise how my MS is now affecting me - more later in my journal.


Anyway, I finally plucked up the courage to try the Gabapentin 2 days ago - I take one 300mg at night before I go to bed - very small dose I know but the idea is to build it if they work. Quix if you are around that would be great, as my past experiences make me really phobic about drugs of any kind but I am desperate!!!!

I have found that I need to be lying down as within 15 mins I am really woozy with it. Other sx of taking one 300mg tab for me seem to be:

- heat beat at double speed (no not panic - we checked that)
- strange sensation all over body as muscles seem to tighten and jerk a little and then subside as it takes effect.
- pain in left arm and up neck and 2 fingers on left hand go numb.
- really bad bloating and wind as my body tries to digest it, have to keep sitting up to burp (excuse detail) but sitting up is difficult as I feel so dizzy
- strange sensation that someone is squeezing my brain inside, don't like this it reminds me of some MS sx I get too
- wide awake but too woozy to open eyes or stand

This last for about 2 hours before I finally fall asleep, as no matter how tired I am it keeps me awake.

Anyone experienced similar and have some reassuring words that this will wear of in time - please? or shoul I be reporting it to my MS Nurse?

Thanks
Pat
x

[Eyesnlegs]

To Jane

Thanks as always in this together xx

To Lulu

Thanks for the tip I thought I had read most of the health pages but we tend to 'forget' - lol. This is a great resource and it has helped loads, so thanks for stepping in here.

Pat x

[Lulu54]

If you haven't done so before, or if you need a refresher, please go back to our health pages and read General Principles of Treating Neurpathic Pain

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36

This was written by a pain management doc - please take the time to read it and I think you will find it helpful

as always,
Lulu

[jed9999]

Welcome back from your holiday! I've taken Neurontin/Gabapentin at a beginning dose for any number of years. I only really realized its value when I went off it at one point. I swore I would never do that again---the increase in pain was too much! My neuro recently asked me to consider taking Lyrica, but I'd rather stay with something tried and true. He considers them much the same although he acknowledged Lyrica can cause swelling. I've been meaning to take an extra  gabapentin pill mid day, but just haven't yet. I like the idea of making it a 100mg at first. I'll be experimenting right along with you, my Brit friend. Love, Jane

[Eyesnlegs]

Thanks to all of you,

I have just spoken to my MS Nurse who said the same thing, she told me to ring my GP and get them to prescribe 100mg capsules and to increase slowly as that would minimise the side effects, or if not we would at least see what was happening.

This turned out to be a good move as I have been dealing with a GP registrar the last year who has now left and the GP who rang me about the meds tells me she has a special interest in pain management and chronic conditions and would I like to continue my follow ups with her!!  well, would I ever so here goes.

Thanks to all of you for the great advice and for sharing.

Pat
x

[michelleric]

Hi Pat!

I had to stop taking it due to very similiar side effects as you. I was seeing 2 refrigerators and just felt like I was drugged. Very dizzy, couldnt walk straight. My neuro called it an "allergy" and put that in my chart.

I had started at a low dose, and was working on increasing it, but neuro took me off.
Good luck to you!

Michelle

[goofysmom1]

I tried gabapentin initally 300 mg at night also.  It was too much  - I had vertigo, and tingling (at first I thought it was just my "usual" symptoms rearing their ugly head), but I called my doctor and she suggested going down to 100 mg at night and increasing the dosage by 100 mg every week or so until I reached the 300 mg.

I never got that far - I had to stop taking due to severe side effects.

As others said, definitely call your doctor or nurse & see if you could start at a lower dose and work your way up to the 300 mg.

Good luck,
Chrisy

[Eyesnlegs]

Hi Guys,

Sounds like some really good advice, I especially like the one about the 3 x 100mg instead of the larger dose, I am about to ring the nurse and see what she suggests.

Thanks so much you are all wonderful, caring and most of all understanding of this awful coward with a real phobia!!

Pat
x

[steph74]

Hi Pat,

Could you ask the dr to write the rx for 100 mg x 3?  That way you could start at 100 mg and work your way up.  I worked my way up slowly (now at 1800 mg/day, but 300 mg 6x/day because I can't take more than 300 or 400 at one time without getting majorly dizzy.

Just a thought.

Stephanie

[Udkas]

Hi there,
I am sorry that the Gabapentin is not working for you, or should I say giving you weird side affects.

I would report this to your MS Nurse.  It may very well be a thing for you that will wear off in a couple of weeks.

I took Gabapentin 900mg  daily divided into 3 separate doses without too much trouble, I just tended to feel a bit sleepy and then it wore off.  I staggered my dose when I first started.  I now take 1800mg a day without too much trouble but again when I first started I did feel very sleepy and out of it for a few weeks and i used to wake up with a terrible dry mouth, I also had some double vision this time when I started the higher dose but the benefits have out weighted the problems.

I would consult your Dr and they might very well say stay on it and give it some time but drug reactions can be serious so yep phone away.

Keep us posted.  I am about to try another drug with my gabapentin tonight as I too am desperate.  Mine is Amitryptaline as a night time dose with the gabapentin to help with neuropathic pain. Hmmm I too am nervous about this but fed up with pain and to complicate matters my chemist reckons I shouldn't take it with the gabapentin and my Dr says do...

Best wishes, thinking of you,
Cheers,
Udkas.

[PastorDan]

Pat, only the wooziness sounds familiar to me.  I've just upped my dose from 900 to 1200mg without authorization, just to see if it helps, which it does.  My advice is to report all those symptoms to the nurse.  I'd also say that, if they advise you to continue the medication, you should make any increases very slowly, allowing several days to as much as two weeks between steps, to allow your system to acclimate itself.  This med has been a bear to adapt to for me, but it's also been the only thing that has helped with the eye pain, which has been awful.