Hi all,
I’ve just started to take Gabapentin (on a low dose) and wanted to know if anyone that takes this has had positive results?
Keeping my fingers crossed I don’t get any of the lovely side affects
Oonagh
xxx
Hi Oonagh, nice to see you.
Gabapentin is widely used for MS to help with pain, tingling, spasms etc. It’s part of a group of drugs developed for epilepsy and then found to work well with MS. Other drugs in the group are Pregabalin and Topomax.
I used to be on Gabapentin but it made my tinnitus worse (I found the same with the other drugs in the group). Most people tolerate it well but some people find it makes the too groggy and prefer Pregablin which seems to have fewer side effects.
It will at first make you feel very groggy, but stick with it. You will soon tolerate it better and if not you could try Pregabalin. Also the dose varies considerably. You have probably been told to start on a low dose and work slowly up. Stop when you reach a dose that helps you (I forget the max dose but they probably told you).
It’s important to take charge of the drugs for your MS. So if something is not working for you, go back to GP and ask for something else.
I personally prefer Amitriptyline (which is an anti-depressant that also works well for MS symptoms).
Hope it works for you… lots of MSers swear by it.
Hope you doing ok hon,
Pat x
Thank you Pat. I’ll only be taking 3 x 100mg a day for now. Have phone appointment on Monday with GP to see how I’m doing with them. GP has refered me to physio which I desperately need…my knee and hip are being hammered due to my rubbish balance (until a year ago I could do a perfect arabesque ).
Thanks again for the advice Pat. I was hoping to be put on Pregabalin but I know you’re normally given Gabapentin first as its cheaper . My GP has no problem putting me on Pregabalin if Gabapentin doesn’t agree with me so that’s good .
Hope you’re doing okay.
Oonagh
xxx
Hi Oonagh, Started on it about a year and a half ago for dreadful burning. Decided I wanted to try to manage without, so have been weaning myself off it slowly and will finish on Thursday. It worked on the burning but gave me horrible dizziness every day and made me very sleepy. Teresa xx
Thanks for your reply Teresa,
Can you tell me how long it took for the treatment to work? I don’t experience burning but have very painfull legs and pins and needles. Lots of luck with the ‘weaning’ process
Oonagh
Gabapentin worked for years with me then on to Pregabalin, it’s not a ‘cure all’ nor a cure muchbut it helps. I once asked is the dizzness, balance problems and tiredness the disease or the drugs? Good question was the reply! If you don’t expect much you won’t be disappointed, exercise and trying really hard not to let it (MS) take over your life.
Chill it’s an unpleasant road but we mange here in the gang, M
I suppose what I really want to know is does it take away or just ease the pain and pins and needles…either would be great…obviously the former would be bloody marvelous! I know its early days so I suppose I’ll have to be patient.
Thank you M.
Oonagh
xxx
It seemed to work immediately for my burning Oonagh. I think that can happen. Teresa xx
That’s good Teresa. I’m trying to focus on my symptoms and I maybe do have burning sensations too but its so hard to discern from the pins and needles (OMG if I say pins and needles one more time LOL). I up my dose on Friday so maybe I’ll see a difference then…here’s hoping
xxx
I think sometimes it takes some time to work to maximum effect. Also, other symptoms can be masked by ones that are more bothersome. They are like background noise - they are there but the worst ones take precedence and you can feel slight ones in the background. Teresa xx
I was going to prattle out a load of platitudes, but have a good day and don’t worry too muchM
LOL!
Top of the mornin’ to you all (its the irish coming out in me)
Just wondering how long it took for Gabapentin to make a difference? I’m on week 2 now and taking 500mg a day. I haven’t noticed any difference but I am on a low dose and, as I said, only been on it for 2 weeks.
Hope you’re all doing as well as your bods will allow.
Oonagh
xxx
Hi Oonagh, I would think that you will start to feel the benefit once you increase your dose. That is pretty low! Teresa xx
Yes, I think my neuro wanted me to start off slow cos of the side affect hooplah! Not had any yet I’ll up it too 600 at the weekend and see how I go. What is the average people take?
Thank you Teresa
Oonagh
xxx
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I took 900 which I worked up to in just 3 days. Your GP is obviously guiding you through this very slowly. Teresa xx
I think you can safely take more than 3000 though! Teresa xx
I think I was on 900 a day…
I have MS related tinnitus and tried different drugs over period of about 4 years… Amitriptyline is the only one that doesn’t make the tinnitus worse.
It’s a bit like buying new shoes… keep trying different ones till you find one that fits…
Pat x
So true Pat Think I’ll wean myself onto 900mg next week. Just a bit worried about side affects. Can’t bear the thoughts of nausea and my legs don’t want to be any weaker (bloody things LOL).
Teresa,
Luckily my GP is lovely and has no quams (sp?) putting me on Pregabalin if I’m not happy with these.
Trying to pluck the courage to arrange to see an ms nurse at the moment. I don’t know whether to leave it till after Christmas as I don’t think I can handle anymore emotionalness (I swear that’s not a word) at the minute.
Hey ho!
Thanks for your replies chickens.
Oonagh
xxx
I know how you feel, worrying about possible side effects. I’ve just started Baclofen and am worried that my bladder might be affected as I have enough trouble with it as it is. So far, it seems OK but doesn’t seem to be helping really either! Gabapentin really increased existing dizziness in me and made me sleepy. I lived with the dizziness and didn’t mind being sleepy! Teresa xx