Gabapentin for post dissection symptoms

Hal61
Hal61 Member Posts: 655
in Head and Neck Cancer #1
For all of you out there who have ongoing tightness, stinging, or aching in the area of the neck from partial or impartial neck dissections, I've been on gabapentin long enough now to see how it's working for me.

For me it's been very helpful. As I've said before, the left side of my neck was ever present. The stiffness, besides the lymph edema, felt like someone super glued my neck. I also experienced regular stinging in the neck and the lower half of my left ear.

Gabapentin was originally developed for use in controlling epileptic siezures and neuropathic pain. Wikipedia says that studies show that about one third of patients in our category will have a positive result from its use.

I take 3 x 300mg per day. I stopped taking it for a few days and the symptoms came back.
When I can stop taking it and the symptoms don't return, I'll stop taking it. I've had no side effects, the list of which runs the legal gamut from tendency to drowsiness to tendency for suicide.

I still feel my neck and ear, but the gabapentin has reduced the symptomatic stinging and tightness by 50 to 70% for me, and that lets me sleep better also.

Not a doctor, not recommending it. But, if you have ongoing neck dissection blues, it might be worth asking your doc about it.

best, Hal

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Hal
    I did not have the neck dissections but like everyone I have the problems in the neck due to the radiation along with nerve damage. Just wondering if Gabapentin will be any help for that and help reduce the pain and numbness.

    Thanks for the tip
    Hondo
  • mixleader
    mixleader Member Posts: 267 Member
    #3
    Gabbies
    I have been on Gabapentin for several months now as I was having intense pain in my right ear, jaw, teeth, and cheek where I had surgery and then radiation. I tried lots of pain killers and nerve blocks and lots of hot rice packs and nothing much helped until my Doc prescribed Gabby for me. The pain went away (mostly) overnight and I have been on it ever since. As much as I hate taking medications, this has been a real good thing for me as the pain was sometimes so intense I could barely stand it. To this day, the doctors still can't tell me if the intense pain was TMJ disorder, nerve damage, or the residual cancer chewing on my facial nerve. My night time 'cocktail' is a Gabby, a Tylenol 4 and an Ativan and that allows me to relax and sleep comfortably. I'm still up every 1 1/2 hours or so to put a drop in my eye and get a drink for dry mouth, but it's not too bad. I know some people claim that Gabbies make them a bit slower mentally, but I'm dumb enough to not see a difference. I did notice that I can no longer extract the cube root of a 12 digit number in my head.......Wait a minute...I never could do that anyway.

    Roger
  • DrMary
    DrMary Member Posts: 531 Member
    #4
    mixleader said:

    Gabbies
    I have been on Gabapentin for several months now as I was having intense pain in my right ear, jaw, teeth, and cheek where I had surgery and then radiation. I tried lots of pain killers and nerve blocks and lots of hot rice packs and nothing much helped until my Doc prescribed Gabby for me. The pain went away (mostly) overnight and I have been on it ever since. As much as I hate taking medications, this has been a real good thing for me as the pain was sometimes so intense I could barely stand it. To this day, the doctors still can't tell me if the intense pain was TMJ disorder, nerve damage, or the residual cancer chewing on my facial nerve. My night time 'cocktail' is a Gabby, a Tylenol 4 and an Ativan and that allows me to relax and sleep comfortably. I'm still up every 1 1/2 hours or so to put a drop in my eye and get a drink for dry mouth, but it's not too bad. I know some people claim that Gabbies make them a bit slower mentally, but I'm dumb enough to not see a difference. I did notice that I can no longer extract the cube root of a 12 digit number in my head.......Wait a minute...I never could do that anyway.

    Roger

    Gaby
    My mother has been on it for years for nerve pain. We weaned her off the fentanyl patch but have kept her on the gabapentin (neurotin). That, plus some occasional Tylenol make her life "normal" despite the extreme arthritis in her back. I don't know about mental slowness - she was on the heavy narcotics before and so seems sharper now, despite dementia.

    The main thing about gabapentin is that you can not stop it suddenly.

    Nerve pain is nasty - if a drug like Gabapentin works, take it.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    mixleader said:

    Gabbies
    I have been on Gabapentin for several months now as I was having intense pain in my right ear, jaw, teeth, and cheek where I had surgery and then radiation. I tried lots of pain killers and nerve blocks and lots of hot rice packs and nothing much helped until my Doc prescribed Gabby for me. The pain went away (mostly) overnight and I have been on it ever since. As much as I hate taking medications, this has been a real good thing for me as the pain was sometimes so intense I could barely stand it. To this day, the doctors still can't tell me if the intense pain was TMJ disorder, nerve damage, or the residual cancer chewing on my facial nerve. My night time 'cocktail' is a Gabby, a Tylenol 4 and an Ativan and that allows me to relax and sleep comfortably. I'm still up every 1 1/2 hours or so to put a drop in my eye and get a drink for dry mouth, but it's not too bad. I know some people claim that Gabbies make them a bit slower mentally, but I'm dumb enough to not see a difference. I did notice that I can no longer extract the cube root of a 12 digit number in my head.......Wait a minute...I never could do that anyway.

    Roger

    Roger
    I think I am in that boat with you, I am too dumb to know the difference, good thing for me.

    Hondo
  • Hal61
    Hal61 Member Posts: 655
    #6
    Hondo said:

    Hi Hal
    I did not have the neck dissections but like everyone I have the problems in the neck due to the radiation along with nerve damage. Just wondering if Gabapentin will be any help for that and help reduce the pain and numbness.

    Thanks for the tip
    Hondo

    Worth a try
    Hi Hondo, I don't see any reason it would'nt work for you any more or less than neck dissection patients. It's not neck dissection specific, like a I said, developed for siizures and neuropathic discomfort. Your pain is nerve genterated. Ask your doc. I get the impression doctors are fairly willing to let a person try as it's non narcotic, which makes them feel better prescribing it. I'm not sure what might be contraindicated, but your doc could tell you if you're taking anything that would rule it out. It's definitely helped me.

    best, Hal
  • Patti678
    Patti678 Member Posts: 55
    #7
    thanks
    Hi Hal-

    I'm going to give mine a little more time but my trap muscle feels so pinched and I have pain every afternoon that sometimes hits 10 on the 1-10 scale.

    I like your superglue comment. I call my nerve feelings in my neck my paper machie necklace. It feels like I have a plastic neck. I do stretches every day and see some improvement but oh I long to just feel normal again.

    Take care-Patti
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Hal61 said:

    Worth a try
    Hi Hondo, I don't see any reason it would'nt work for you any more or less than neck dissection patients. It's not neck dissection specific, like a I said, developed for siizures and neuropathic discomfort. Your pain is nerve genterated. Ask your doc. I get the impression doctors are fairly willing to let a person try as it's non narcotic, which makes them feel better prescribing it. I'm not sure what might be contraindicated, but your doc could tell you if you're taking anything that would rule it out. It's definitely helped me.

    best, Hal

    Hi Hal
    I go for my PET on the Dec 8th and will see my Oncal Man on the n9th for the results. I will ask him to prescribe a 30 day supply for me to try, thanks for the very helpful information. Like you said we are not doctors we are just the poor people, who have to live through this every day.

    Take care
    Hondo
  • vsudd
    vsudd Member Posts: 52
    #9
    Gabapentin
    My husband had a radical neck dissection in 2010. Since then he has been in chronic pain. He takes Gabpetin at night 300 and sleeps really well, but he has tried it during day and it makes him too drowsy. The docs have him on hyrdocodine every 4 hours and they have suggested the gabapentin during the day. I will show him this post. I think the might be worth at try .

    Thanks for the info.

    Vsudd
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    vsudd said:

    Gabapentin
    My husband had a radical neck dissection in 2010. Since then he has been in chronic pain. He takes Gabpetin at night 300 and sleeps really well, but he has tried it during day and it makes him too drowsy. The docs have him on hyrdocodine every 4 hours and they have suggested the gabapentin during the day. I will show him this post. I think the might be worth at try .

    Thanks for the info.

    Vsudd

    Hi Vsudd

    I was on the hyrdocodine for a while but did not like the affect as It was going me problems working, does your husband have any problems or side affects from using it. I do a lot of work in the office but every now and I then I have to go on one of our Ships and that is where I start having problems.

    Thanks
    Hondo
  • vsudd
    vsudd Member Posts: 52
    #11
    Hondo said:

    Hi Vsudd

    I was on the hyrdocodine for a while but did not like the affect as It was going me problems working, does your husband have any problems or side affects from using it. I do a lot of work in the office but every now and I then I have to go on one of our Ships and that is where I start having problems.

    Thanks
    Hondo

    Gabapentin
    Yes, he has side effects . Nausea is the worst, and tiredness. He couldn't even take these meds when he had his first bout with cancer 5 years ago. They made him so nauseated he just delt with pain during his 5 weeks of radiation. He started with the nerve pain about 5 months after surgery . He started going to pain management and has been on hyrocodine for pain and promethazine for the nausea . The promethazine has been a life saver for him, because he has to take it every time he takes the hyrododine or he gets nauseated. Hopes this helps.


    Thanks,
    Vsudd

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