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Experiences with gabapentin ?

Posted , 4 users are following.

matt90210
matt90210

Hi fellow sufferers can anyone give me theyre experiences with gabapentin? Am reluctant but deperate. Figured you guys would have the best and most honest experiences. I feel like there is a belt tied so tight around my waist. Pretty much being strangles alive for 16 months. Thanks guys. I did have phn ten years ago in neck and took a few years to subside. Did nothing to fix it just went away with time. Now i can feel it wver so slightly. More a nuisance now. Is this how phn works. If u givenit time it will almost all go away. Ive just been reading people having it for 30 years and that sounds unbearable. Hope u guys are optimistic and hope yours is lessening. Glad we have eachother. Matt

0 likes, 11 replies

11 Replies

  • docmartin66
    docmartin66 matt90210

    Posted

    I am sorry about your condition.

    Unfortunately(?) I am not a sufferer, but I am following this forum because my father is cursed with this condition, so I am always on the lookout for anything that can help.

    Here is what I've picked up from this forum (browse around, there are many discussions about these things)

    Gabapentin is an anti epilepsy drug and clinical trials show that it does have an average of 20-25% reduction of the pain scores.

    It also have side-effects, drowsiness and others, that some patients don't feel weigh up for the reduction of pain.

    Lyrica (Pregabalin) is another one for epilepsy, and has similar scores and similar side-effects, so I suppose if one doesn't work too well, the other may suit better.

    As for other drugs that may help are:

    - Antidepressants, they have shown to also affect the pain center in the brain, so that the pain signals are reduced. These kinds of drugs do have side-effects that may or may not be desired.

    - Qutenza patches, they are basically strong chilly patches that are applied by a doctor/nurse for 1 hour and have been tested to give relief/reduction of pain for up to 3 months.

    - Lidocaine spray can give short term (30-60 minutes) immediate relief (usually sold without prescription), usually around 4%

    - Lidocaine patches that are stronger than the spray (typically 8% and also more of it)  can be applied at home, they should stay on for 12 hours at a time. (patients report relief but it can cause skin-irritation). This patch is often used in combination with Qutenza.

    - Topical agents, like Aspercreme. There are at least two types of Aspercreme available, one with Lidocaine and one with Trolamine salicylate, which is a derivative of (Aspirin)

    - Opiates, normally in combination with paracetamol (works, but the side effects are increasing resistance to the drug and he risk of dependencies)

    There are currently ongoing trials of a new drug called EMA401, the trials are mainly in Europe and one of the requirements are that the patient is not currently using any other pain-relief drug (I think Lyrica is allowed).

    Talk to your doctor about it if you are in Europe, the study ID-number is CEMA401A2201  and they are currently screening/recruiting.

    This is currently the only drug addressing the pain related to nerve sprouting and has showed very promising results regarding PHN.

    Other things that I've seen mentioned here on this forum, which is more in the experimental area are:

    - Laser

    - Cryogenic (freezing) treatment

    - Nerve ablation

    - Acupuncture

    - Botox injections

    I am sure I have forgotten a few, but here are the ones I know, I hope you find something that works for you.

    • matt90210
      matt90210 docmartin66

      Posted

      Thanks for your suggestions. Much appreciated. Still looking for personal experiences as some have said its dangerous stuff to use and that its not worth the pain reduction. My fam has a history of alzhimers and am teluctant in anything that affects the brain. Hooe your fathet finds some. Peace and relief. General consensus seems to be time is the ultimate healer with this. Inhave dealt with this oce before and it took a few years for it to become a non issue. I did nothing but let time heal it. Hope thats true for me again this time around. Im currently practicing mindful thinking   Really deflecting any negative thinking. Not allowing stress to take over. Infigure if stress got me here destressing can hopefully get me out here. Not looking for another addiction. 
  • Geezee
    Geezee matt90210

    Posted

    Hi Matt

    I have tried all the major prescribed medications over my nearly 5 years of PHN, including gabapentin. I found that it was very helpful initially, but slowly, over the course of a few months I needed to increase the dose to maintain a level of efficacy. 

    The problem is that the higher the dose the more pronounced the side effects can become. With gabapentin I found the most troublesome side effects were mental, especially depression and confusion. It really started messing with my mind and I found it difficult to concentrate. There were times when I found it difficult to even make simple decisions, as weird as it sounds. Eventually the effects became so bad that I switched medications (but that too eventually led to too many harsh side effects). 

    Such effects only happen in a minority of cases so there's a strong chance you might not experience any. 

    I'm happy to share more if you'd like. 

    Good luck!

    • matt90210
      matt90210 Geezee

      Posted

      Hey thanks for sharing your experiences. Has time eased the pain any for you? Where is yours located? Are u currently using anything to help u  and has anything helped hour issue. Hope your feeling better these days 
    • matt90210
      matt90210

      Posted

      Also did it actually delete the pain for u ince u found th right dose. Would unrecommend it to someone. 
    • Geezee
      Geezee matt90210

      Posted

      Hi Matt

      ?My pain is on the trigeminal nerve on the left side of my face and head. I've found a number of triggers for my pain, but the most prominent cause seems to be stress. The more stressed I am the more likely I am to suffer from bouts of pain. So I have lately been trying to focus on reducing stress as much as I can to hopefully get well properly. 

      At the moment, I am only using tramadol as a painkiller, and occasionally using oxcarbamazapine for short periods. The side effects of the latter can become too much for me if I used it for long periods. 

      I did find the gabapentin to work pretty well. For the first month or so I was on it, I did not experience any pain. In fact, I thought I was just about cured. The pain slowly started creeping back over the course of a few months. 

      I would recommend it, but with caution. Don't expect a cure, be prepared for the pain to return and/or the side effects to slowly become a problem. If possible, try to keep track of your mood/mental health, as the depression comes on gradually, sneaks up on you without you realising what's happening, and the next thing you know you're lying in bed all day without energy and feeling like a weight is pulling you down. A heavy, chemically-induced weight. Chances are it might not happen, but it doesn't hurt to check yourself

    • matt90210
      matt90210 Geezee

      Posted

      Thanks geezee very much appreciate  hearing your exprience. Yes.  I think the stress thing is key. Currently working on coping mechanism as stress is guaranteed to happen in mu line if work. Its how i percieve the situation which is important. Blocking the negative thoughts. Indont wanna be a vegetable.  I have energy still tho this nagging pain tries to slow me. I refuse to let it beat me and. Think a level head is more important at getting better. Wish you the best on healing and hope u someday your pain vanishes. Again thanks for yiur story. 
    • matt90210
      matt90210 Geezee

      Posted

      Did you ever battle with depression before this shingles episode? Im findingnit hard to beleive that youd recommend it even thonit said it would donwhat you said it did to you. I tend to be already mildy depressed so really trying to use this ailment to be a more overall pisitive person. Enough letting my own thoughts think i should be sad. Life to short   Using this to retrain the way my brain operates. Naturally. Gunna take work but already feeling like i can thrn it around
    • matt90210
      matt90210 Geezee

      Posted

      Also geezee how long did u go on it for before u decided to move on?  Thanks. Stay strong
    • Geezee
      Geezee matt90210

      Posted

      I had moody periods before, feeling down, negative thoughts, all that. But depression is something else, I didn't recognise it until I started listening to other people. At times it felt like I could not physically get out of bed, the more I fought it, the stronger the grip. I could not think my way out of it, I just had to lie and wait for it pass. Sometimes when it did eventually pass, I felt a short rush, like clouds were parting in my head. 

      All these meds used to treat PHN are very serious medications, it's not like popping an aspirin and going about your day. Coping with the meds is almost as much trouble as the pain itself. 

      I was on it for nearly a year before moving on. 

  • marcia52984
    marcia52984 matt90210

    Posted

    Hi Matt:  I've had PHN for 1 3/4 yrs.  I've used Gabapentin for much of that time going up to 2700 mg. at one point with an average of 1800mg.  I was sleepy but didn't have other side affects.  I did have some confusion but didn't realize that until I finally read the side effects.  I weaned down very gradually  to zero mg. and have been there for a month.  Once I had to take 300mg at night but only did that once.  I take 2-3 extra strength tylenol.  I do take propranolol for essential tremor which makes me sleepy so I can't win but I'm happy to be off the gaba.  I do hurt mostly at night but I've decided to live with it.  I use aspercreme 4.% on my left forehead and head and eyelid since that's where I had my shingles.  Hope this helps and good luck.

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