1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Neurontin (gabapentin) with CFS

Posted , 6 users are following.

Kristy21
Kristy21

Hi all,

Im just wondering if anybody else is being treated with Gabapentin for CFS? Has anyone experienced any adverse affects on these meds? 

Kristy

 

0 likes, 14 replies

14 Replies

  • GeorgiaS
    GeorgiaS Kristy21

    Posted

    I've never heard of it. What is it and what does it do?
    • Kristy21
      Kristy21 GeorgiaS

      Posted

      I believe it's used to help with neuropathic pain and nerve pain
  • elliebee
    elliebee Kristy21

    Posted

    Hi, I've been on Gabapentin for around seven months, quite a high dose (900mg three times a day).  I found it helped a bit with the pain, though I've recently had nortriptyline added on top which is definitely making a difference.  I've not had many side effects - it's been hard to unpick the symptoms from side effects, as brain fog, disorientation etc were already part of daily life for me!  One thing I would say is to be careful about building it up - it took seven weeks to build up to the full dose I'm on now.  This worried me a little as I took it for quite a while before it seemed to be helping with the pain. It is a pretty powerful drug, so coming off it will have to be gradual too.  A consultant neurologist advised me to 'just switch to nortriptyline' over a couple of days.  Fortunately I saw my GP before I 'just' did that, but even at a slower rate, I had pretty unpleasant withdrawal symptoms (which is partly why I'm now on a combination).

    One thing I have experienced is weight gain, but to be fair, I'm also almost completely sedentary (having been at the gym twice a week and walked everywhere before I got ill) and I have a tendency to comfort eat, so again, it's hard to say that was definitely down to the Gaba.

    So definitely worth a try, but be careful, talk a lot to your doctor, and hopefully it will help. 

    El

    • Kristy21
      Kristy21 elliebee

      Posted

      Hi El,

      Thank you for the comment.  I recently started on a low dose to find 200mg 3x a day but had real bad heart palpitations and ended up in hospital on boxing day wired up to heart monitors sad 

      The consultant I saw recommended that I wean off the meds as they believed that they were causing the heart issues but since start to reduce the dose down I feel awful and am unsure whether to just stick with it and hope my heart just settles down? 

      I have an appointment with my GP this week to discuss further I just wondered if you had any initial side effects? 

      Kristy

    • guy72767
      guy72767 elliebee

      Posted

      Hi...I take Prdgabalin for neuropathic pain...not helping much at present...interested in Noritryptiline though...spelling error sorry...
    • elliebee
      elliebee guy72767

      Posted

      The neurologist felt the Gaba wasn't helping because I was still in pain, so suggested nortriptyline (I don't actually know if that's right either!), which is in the same family as amitriptyline (sp??).  Originally prescribed for depression in much higher doses, taking up to 70mg can relieve nerve pain (it can be prescribed up to 200mg for depression, I think), but since I'm staying on the Gaba, my GP said he wouldn't be happy to see me go higher than 30mg.  I'm on 20mg now and I think I'll stick here.  It doesn't dissolve the pain the way a paracetamol gets rid of a headache, but it is suppressed and I can now function well enough to work, albeit part time, and albeit I still suffer from fatigue, fog, wooziness etc.  There are side effects associated with nortriptyline too though (I have a very dry mouth, rashes, vivid and disturbing dreams, and visual disturbances - mainly colour enhancement, which is actually quite pretty), so it's a constant weighing up of costs and benefits.
  • elliebee
    elliebee Kristy21

    Posted

    Oh and I forgot - it's given me mild muscle twitching, which isn't altogether unpleasant so it didn't really bother me!  It cured my restless legs which was keeping me from the sleep I could manage, but when I sit and relax my arm and leg muscles give little jerks and contractions - I've checked and apparently they're not visible to those around me!  A bit like the twitching you get in your eyelid, really. 
    • GeorgiaS
      GeorgiaS elliebee

      Posted

      Thanks for the info. I won't use it because I try to avoid prescribed drugs as much as I can. Many reasons but one is that I have multiple chemical sensitivites so I can't risk it. I just wanted to know what it is.

      I'm glad it's helping you though and that you've posted about it because it might help others too. smile

  • elliebee
    elliebee Kristy21

    Posted

    I think I've been lucky - I know it does tend to be either really helpful or really harsh. It's hard to say what the initial symptoms were, because I was so ill by the time I started taking it.  I did have the shakes and a lot of nausea and yes, those have subsided since I started on it.  I take it for neuropathic pain down the left side of my body, and nothing else helped.  I developed an allergy to Naproxen suddenly that landed me in A&E, so my GP has been really cautious with prescribing, and I upped the dose by only 1 capsule a week to see how I got on.  I didn't think it was doing much for the pain until I tried to come off it. 

    I think neuropathic pain is the worst in terms of trying to find relief.  Most of the prescribed painkillers come with a long list of side effects, and I guess it's just weighing up how bad a symptom is, then proceeding slowly.  I couldn't work, sleep or function, the pain was so bad.   Good luck!

    • elliebee
      elliebee GeorgiaS

      Posted

      I've been a bit more stable recently, but I'm in the early days, only been diagnosed a year, so it's all been a bit of a blur.  Horrible, horrible illness. Hope you're keeping well.
    • GeorgiaS
      GeorgiaS elliebee

      Posted

      Illness can be utterly horrendous! I have ME but I'm making slow, very slow improvements and I believe I can get well. I've started getting a bit more into cooking and learning new healthy recipes lately, which is a sign that I have a bit more energy.

      Take heart and don't despair! You're not alone. 

  • jackie00198
    jackie00198 Kristy21

    Posted

    Yep, I tried Neurontin and was unable to tolerate it. Forget what side effects I had. You have to remember that there are possible adverse effects to any drug. It's always a question of benefits/risks.
  • emmb
    emmb Kristy21

    Posted

    I've not got CFS but do have nerve pain. Tried pregablin, gabapentin then gabapentin lowered dose with amitriptyline and had all the side effects mentioned. Was toying withNortriptyline but ifsame family and same side effects experienced by so many it's probably not worth it. Has anybody any advice or success or tried other meds? Are these the same family?

    alternative mentioned by my doc is to have canula in spine with bag for meds and pump under skin near stomach. Often known as bachlofen pump for spasms (I take that too) but I don't fancy something so invasive.

    there are some very informative videos on youtube by people who have gone down that route and apparently a very high dosage in tablet form can be solved by micrograms in liquid form and much better resultswith less side effects..plus pump can be programmed to work at certain times of day if pattern merges or all the time, but it has been said it can take a long time and tweeking to get settings or dosage right. 

    Sick of not being able to function because of the side effects..plus the weight gain from amitriptyline has almost led to depression.

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.