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Amitriptyline .. Alternatives for nerve pain relief?

Posted , 3 users are following.

emmb
emmb

Hi, I am a paraplegic with spinal cord injury T9/T10 complete and for nerve pain have so far been on..

Pregablin......allucinations, manic period early days, complete cognitve shutdown

Stopped that and started 

Gabapentin...more lucid but still cognitive affected but sleep...never any warning and sleep solid 14 hours or so, no matter whatI was in middle bringing own set of problems. Been on this for 18 months, no improvement in side effects but still getting nerve pain, so..put on

Amitryptilline last 6 months, in addition to Gabapentin

The amitryptline has been so bad I  have declined completely to point I am on floor several times a week, paramedics coming to lift me up, skin wound etc..but all startedby fact this drug makes me feel drugged up all day and falling asleep constantly in chair, sometimes for days without moving and just waking for few seconds here and there...The onward implications are long...and fast response called several times after failing to get back in chair after falling to floor. Plus lots of other side effects

I have asked my medical proffesionals about alternative medicines for nerve pain and keep being told there are no others. However I spoke with someone recently who had her accident many many years ago and they had similar problems and limited tolerance of these three drugs, but were eventually given an alternative drug which worked..cleared up side effects and killed the nerve pain! Unfortunately she can not remember the name of it and no longer needs it.

So, does anyone out there know what the alternative drug for nerve pain might be??

 

0 likes, 12 replies

12 Replies

  • duracell_dave
    duracell_dave emmb

    Posted

    Morning,I too tried many other and all of what you stated,I went on 400mg slow release tramadol and 4500mg gabapentin, slept all day long,but reduced to 2800 of gabapentin and slept a lot less am now on 200mg tramadol and 2100mg gabapentin,I sleep a bit in the day but pain is small when I do nothing and my nerve pain is in both legs Are xtreme ,I live in Germany for 3 years now as soon as the drs Saw how much medication uk dished out they offered me spinal cord surgery,consist of 2 wires in the spine, one for each leg and attached to a 9 year battery in my butt (all free),I don't know if this applies to you, they can attach the wires anywhere in the spine for even migraines, all about the electric pulse reaching the brain before the pain as the brain acts on one or the other,all those years on drugs only to find here Maybe a solution,they do it all over the UK they just don't offer it,myi met people here that were on tramadol and 1200mg gabapentin daily and have one year later no drugs at all just the machine,it's from medtronic,it's all on YouTube and is super,the battery even has a memory,I hope something helps and if I hear if any other drug I will come back to you, I hope life gets even a little better for you.
    • emmb
      emmb duracell_dave

      Posted

      Hi

      So sorry, it has taken me a while to find yr reply..for some reason, not notified, or maybe it went to my spam box. Anyway, thankyou for taking time to reply!

      i am so happy you found a solution. What you describe sounds bit like Scs (spinal cord stimulator)? which turned out not to be suitable for me (will have to read notes again to remember why but may be because I have the complete spinal cord break so messages don't get to the brain..but how this nerve pain registers is a mystery, although common. 

      Since I last wrote, I have been to the Pain Clinic and the doc decided to stop Gabapentin completely and Amitriptyline too, for a trial but also because I could not function as was. He thinks the alternate drug is Nortriptyline but is in same family with same side effects, so talking of putting a canula in my spine and bag and pump under skin near stomach....what I know of as a Bachlofen Pump..I am on bachlofen and diazepan too for anti spasm qualities..but he was saying can add any drugs..maybe a different pump, but either way is very invasive surgery and I'm reluctant. He just says that the meds are given in micrograms, regulated to times of pain and liquid makeup is easy n fast acting. Still, lol my belly is big enough without a bag. 

      I will look at the metro.. That you mentioned on you tube to see if same and relevant, but please do let me know if you come up with anything else cos at the mo feel like someone trying to pull my skin off legs and disect them at same time as shoving broom handles at them..and ocasionally hanging from ceiling by thong/g-string knickers lol. 24 hours a day or at least every waking hour.

      so, trial period two weeks been up, no improvement. Any alternatives to pump welcome.

      i know you get nerve pain in legs but may I ask why or what yr situation is? Feel free to private message me if you'drather not make it public. Just interested to compare reasons for the pain etc.

      thankyou

       

    • duracell_dave
      duracell_dave emmb

      Posted

      Hi,sounds awful what your going through,I used to be a plasterer and just turned round in a cupboard and that was 17 years ago,I have savers nerve pain in both legs the right more that the left,that's why the operation with the wires was good because I ask for a battery with a memory,the medtronics man meets me in the hospital and programmes the voltage for when sitting,standing,walking etc all different and different in each leg,when I have a bad day I turn it up myself sometimes to high and get up for a cuppa and feel like I'm getting electricuted 😀,I have stopped using it as my muscle in my back was stinging when the machine is on,I have an appointment with hospital to have a spinal blocker injected,sounds fun I know,I have daily headaches for the last 3 year's so I have from last year reduced from 3600mg gabapentin to 1800mg and 400mg tramadol to 100mg,Apparently they are rebound headaches to to so much tramadol or even gabapentin although they use that for headaches lol,what are we like,people see me walk the dog 2 x 30 mins every day and I smile laugh etc,they wonder why I'm not working,only my wife and people like yourself know exactly how nerve pain is an unbelievabley sh*tty pain of which you can't explain but it make you so messed up,but my wife is great and places like here are not just for answers but to moan and groan,let it all out,HELP ME 😃,it's like therapy,so thanks for listening and let me know how you get on with anything that you find,if you go down the scs route let me know and I will write exactly what go's on with photos (in colour lol),have a nice evening.
    • emmb
      emmb duracell_dave

      Posted

      Oh gosh good luck with the blocker. I'll have to look it up again..there is stuff on here about nerve blockers if you want to search. I look stuff up and then cannot remember..like the scs. I know what you mean about other's opinions..I was supposed to return to work initially but how things paned out with meds n spasms n being bedbound for best part of year with wound meant I ended up being retired medically but there are plenty at work who think I was skiving up to that point and that I engineered leaving work. Even my line manager who I've worked with for about 20 years won't talk to me, yet initially was calling every day to see how I was getting on. Won't even reply to my calls or messages. People don't understand... daft thing is that with my job there are legalities that mean I can not work with the meds even if there were no side effects and they solved all pain..plus, although I doget an income,it's about half what My salary was so not in my interest. Made me fee I coud not tell them I was goingon my first holiday despite it being with a big spinalinjury charityand fully supported etc..ironically became semi- bedboundaf way throughand bedbound on return. :-(

      Let me know how you get on. :-)

  • joh13240
    joh13240 emmb

    Posted

    I to have nerve pain from the knees down on both legs  due to gout and ra last year I tried TENS and Electrothermal Therapy for Pain Management. This did not work for me because of the large area of pain. This may be something to look into. I know someone who uses it for back pain. He was in the Air Force and flew fighter planes in Vietnam and the Cold War scrambles and the high G's messed his back up.

    i tried just about every pain med out there with no real success. I started seeing a Dr. That is trained medical hyptotist. It works very well in taking away enough pain for me to function 90% of the time. Sometimes It takes so much mental energy, I zone out for a hour or so in the morning so I can get something done.

    NOT SOLUTIONS WORK FOR EVERYBODY, but you have to keep trying and not. Give up.....

  • joh13240
    joh13240 emmb

    Posted

    I forgot an other solution. I wear raw wool stockings up to and over the knees. Seems the ich of the wool confuses your nerves and I get a slite numming effect. But wearing them sort of drives me crazy and I just use them when I go to bed.
    • emmb
      emmb joh13240

      Posted

      Cheers John13240 I'll look into them. Will need to take advice though as both your options seem to rely on messages from/to brain as don't understand how get this pain when all the nerves in spine are completely broken so messages cannot get to brain. It is a common thing though, I'm not alone in complete spinal cord injury to get nerve pain in legs n bottom half from waist diwn when experience nothing if pin etc in leg. I always call it 'fake pain' but Pain Clinic insist wrong terminology as is not fake but does not seem logical and they've not offered explanation..or if they have I've forgotten along with everything else I forget due meds lol. 

      Can I ask..where do you get the raw wool over thigh socks from please?

      cheers

    • joh13240
      joh13240 emmb

      Posted

      The wool stockings are made a sheep framer friend's wife.

      the wool ich tricks the nerves in some way and to tell you the truth it is a very comfortable condition.

      have someone go buy you a pair of wool boot socks and give them a try. 

      Not sure where are but there should a sheep farmer somewhere close to you.

      i live  in northern Maine, USA across the "Big Pond"

    • emmb
      emmb joh13240

      Posted

      Lol i have just come back from Colorado yesterday on a spinal injury fully supported trip to the National Ski Centre for Disabled for sit-ski! Fab..but came home with wound so bedbound. Booo. 

      And even the distraction did not relieve pain..more proof real and not 'in my head' or due lack of focus as has been suggested. Grr.

      Guessing could find sheep farmer but not one that's willing/able to make stockings lol.

      will try some wool socks but they are below knee plus commercial grade is softened etc guessing your help is from natural state...?

       

    • joh13240
      joh13240 emmb

      Posted

      in the UK ear-nose- trough Dr 's use TRT. I suffered with tinnitus for years.

      how it works is that a special hearing aid generates the exact tone of the tinnitus. You set the hearing aid tone sighty higher than your tinnitus. It tricks the brain to listen to the tone and not the tinnitus. Over time you turn down   tone and your brain puts the tinnitus into back of your thoughts. It's still there you are just not listening to it.  The wool socks do the same thing I think.

    • emmb
      emmb joh13240

      Posted

      Oo that's interesting..the brain is a very complex thingisn't it?

      Thing I don't get in my sit is that as all the nerves sending signals tobrain from bottom half are severed the feeling of stockings won't be felt. But still worth a go......mind, if I bashed my legs etc would not feel it but still feel the nerve pain. Willing to try anything before surgery and bags nserted n skin n things inserted in spine. Thanks joh. Glad your tinnitus got sored :-)

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