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  • neuro hell

    Hello.. like alot of us I deal with severe central neuropathic pain, will I'm here to say I've had enough of this.. it's ruining my life , I'm on gabapentin which does nothing to relieved my pain.. Lyrica made me want to pull my head off my shoulders... im up for suggestions... before we go thru the gammic of meds, I personally don't do well with meds... anyone have any ideas without whacking me out of cognitive thinking..?

  • #2
    Hi Freespin - I can't 'reason my way through it' or think my way out of the neuropathic suffering. I have tried over the 12 years not to take meds. It took a great deal of energy - I couldn't do things like work or exercise to the degree I wanted, and it was generally an unsustainable management approach. So it was back to the medications.

    I think you have to make peace with the medications in order to live some sort of manageable life. I don't think with what you describe one can find a way to manage or sustain a life without meds. Sorry about the realistic unsanguine opinion. To me, it is like asking a bad diabetic to NOT take insulin. Sure he can eat right, not get overweight, etc. , but if you need insulin, there is no getting around it.

    With that said, go with meds that are proven to help. An evening dose of amitriptyline or nortriptyline. Complain about the anticholinergic drying effects and sleepiness - Sure. But it helps. Have you tried 400-600mg of Lyrica a day for 3 to 4 weeks? The side effects reduce with steady use. I complained bitterly about the CNS dopiness initially - but see if you can get through it - I needed family encouragement as I whined about i't. I think some people get benefit from a sleeping pill. You need to get a break from it and you need sleep. Many people find benefit from as needed valium. What ever it takes to get through the day, have some reasonable life, and not get demoralized.

    Then you can throw in meditation, exercise, or being tougher than anyone else. I try to remember that there is greater suffering than neuropathic pain, such as the mental anguish for people who have lost a child...
    I hope this helps somewhat.

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    • #3
      arndog is right, gabapentin is often combined with meds like amitriptyline or nortriptyline. What dose of gabapentin are you taking? Some people have to ramp up quite a bit before they find any benefit, if they can tolerate it. It's a med that has helped a lot of people, but it's one that I always recommend people research for themselves.

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      • #4
        I am with you free spin. I have not found anything that even touches the pain. The Doctors in my town don't believe in giving me narcotics because they may be addicting. l have begged like a dog for seven years and taken all kinds of meds with no luck. I call it pixie dust because it is just a joke. The doctors and scientists can't even cure the common cold. Gabapentien did nothing but maybe it was to low of dose as David said. I don't know what the answer is but I am very tired of living in hell. Some nights I get about 3 hours sleep if I am lucky. Sorry for the whining but I have to vent somewhere. Summer is coming and there is more to do which helps but you still end up battling this shit for some reason. I have been sent to a pscyh ward a couple times because of chronic pain driving me nuts. So I guess what I am saying is you are not alone and I hope somebody comes up with more suggestions for you as I have none. Trying to live and even think like a normal person seems to be a challenge. The valium might be a good idea and I think I may try that as maybe it will calm my brain at least. Arndog is right too as trying to survive without help from something is unbearable.

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        • #5
          Freespin, not sure what relieve there is for us folks that do so poorly on meds. Its like for me, if the drug is not messing with my brain then it stops helping with neuro pain. Went through 3 weeks of hell trying to get used to gabapentin, when finally got over the side affects, well of course then it quite working. Out of desperation tried a larger dose, and after a month of terrible side affects, just gave up and went through nasty withdrawals.

          Hey Stevegalliazzo, So I went on opiates next. They worked for awhile, and it was great. Even made it on a five hour drive to my daughters house. But they turned on me, that nasty fentanyl mixed with Hydromorphone, and made it worse. The withdrawal is just about done, and its a real bitch, that's for sure. I made up some cannabis extract, and its working better then anything else so far.


          Serotonin uptake inhibiters actually gave me my first panic attack, in my hole life. That was fun, but at least now I know what people who get this go through. Its hard to imagine folks live with them all the time.


          Bottom line, pain drives one to put up with more side affects, like Arndog does. But for those of us that are overwhelmed by the side affects, no matter how long we wait to get used to them, I don't think there is a very good answer. Sorry
          T12L1 Incomplete Still here This is the place to be 58 years old

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          • #6
            I tried amitriptyline again with my 3 x 100 Lyrica (which I'm basically taking now as an antiseizure med, as I haven't had a seizure since October, 2011, after four in a two-year period with unknown cause), and it had no effect, like every other medication, dosage and combo over the years. I think my ever worsening pains just like giving the finger to the medical profession. And to me.

            Between the upper back pains, shoulder blade issues, and constant balance problems (tipping to the left and always bending forward), I don't even want to get out of bed anymore.
            Last edited by alan; 03-28-2015, 04:50 PM.
            Alan

            Proofread carefully to see if you any words out.

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            • #7
              sorry it took me so long to get back, have been dealing with a lot of pain, didn't want to sound like I was whining, with that being said I really take in to consideration what everyones comments are , very difficult dealing with this pain..
              i'm getting to the point where working out or even just transferring is just more pain.. sucks when I'm full of life but haven't been able to get where I want to be due to pain.. I would agree there will be new meds in my near future but don't hold out much hope on much relief .
              I'm on a low dose of gabapentin if I up it I get into a zombie like state...no energy at all and still in pain..
              I would try different med combination, difficult due to I'm a single home owner , so there is no one to catch me slipping while I go fishing for less pain...
              frustrating. .

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              • #8
                My regimen (devised after trial and error and slow titration to become tolerant to sedating side effects):

                long acting gabapentin (gralise) 3000 mg a day divided into 1800 mg at bedtime and 1200 mg in the AM (allowed me to sleep for first time in a year)
                plus gabapentin 300 mg up to five times a day (the as needed gabapentin allows for adjustment depending on what kind of pain day it is)
                escitalopram 10 mg a day (I don't need an anti-anxiety agent per se but who doesn't have anxiety when their pain is not under control??)
                baclofen 10 mg up to five times a day (have to control spasticity to control neuropathic pain as they feed into each other)

                This gets my neuropathic pain (burning, stabbing, electrical and hypersensitivity) to a 2-3 on good days and a 4 on up on bad days but the point is I can function and enjoy life most of the time. Excercise, stretching, yoga is a must for pain control for me as well.
                If the pain breaks through this then I take 0.5 mg - 1 mg lorazepam and go to bed
                If the pain breaks through that then I have a bladder infection brewing.

                I went through several docs to get to a PMR/physiatrist who was willing to let me titrate the gralise and gabapentin for effect with the least sedation.

                T9/10 incomplete 2012 from radiation for breast cancer in 2009

                Hope that helps someone else out there.

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                • #9
                  So tired of this pain , people don't understand, when they look at me I must look fine to them , just another guy sitting down , what they don't see is the burning hell I feel every second of everyday .
                  Last night we had thunderstorms come thru , used to love watching it storm , yeah the burning hell kicks up to a constant bee sting from t12 on down a specially around my waist and hips ..
                  This is a crazy way to live , appsolutely Maddening at times...
                  And doing meds , oohhh yeah about that problem or problems I didn't have till I took this med or tried that med , maddening...so tired of this
                  Rant over !!
                  As if

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                  • #10
                    We look fine (save for being in a chair), despite indescribable pain sensations.
                    Alan

                    Proofread carefully to see if you any words out.

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                    • #11
                      I'm with everyone here. It's an art and science finding the right mix of meds to manage this relentless hell.

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                      • #12
                        This is Elby in Colorado. What strain did you use in your cannabis extract? The strain I used messed with my spasticity but helped with the pain, I'm actually going to Denver soon to experiment. Thanks I actually have high hopes.
                        Elby

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                        • #13
                          I use serotonin cream along with gabapentin and it has helped,you just rub a bit on your skin every night before you go to bed and it has halved my neuro pain.
                          Do not take serotonin casuals or tablets as they will give you diarrhea,the seritonin cream also gives you a good nights sleep. It works for me........................

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                          • #14
                            Originally posted by alan View Post

                            Between the upper back pains, shoulder blade issues, and constant balance problems (tipping to the left and always bending forward), I don't even want to get out of bed anymore.
                            Alan,

                            I've had pain in my shoulder blades right from the time of the accident. I remember asking numerous times for something to take away the pain while in ICU. Not too long after I got home it was my right shoulder blade that was giving me the most trouble. While doing outpatient therapy my PT decided to try Biofeedback on my legs at first. During one session I had her place the muscle sensing electrode on the area that was bothering me on my right shoulder blade. Upon doing so the reading went off the scale on the monitor. This indicated that my source of pain was, and still is, an overactive muscle. The pain is essentially the muscle cramping up. Over the next several years I was on an opium based pain killer program to try and alleviate this pain. During this same time from I try acupuncture and Botox to get rid of it. The Botox worked a little bit, but became ineffective after about the third round of injections. At night I would take 10 mg of valium and quite frankly that worked the best. It should though because the valium relaxes everything plus it helped me get some sleep.

                            In December of last year I had to do a quick detox of all opium based products, including valium, because I became hypersensitive to them. After the detox I was put on Suboxen. Not really sure what the suboxen was suppose to do, but it didn't touch my shoulder blade pain. Investigating further I reached the point to try a 3 rounds of a nerve block injection at the C5 vertebrae. After the second round the doctor told me that he saw what appeared to be a bone spur in the canal that carries the nerve out of the C5 vertebrae. This bone spur is hitting the nerve and agitating it. As of now, surgery is the only option. This surgery is then further complicated by the fact that my hardware in my neck will need to be removed. Oh joy, oh joy.

                            Just thought that I would share this because what sometimes may start out or feel as being neuropathic pain may actually have a root cause upon further investigation. Good luck in finding some relief.

                            DaDutchman
                            DaDutchman
                            C5/C6 since 2007 due to car accident

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                            • #15
                              Originally posted by Ragersilver View Post
                              I use serotonin cream along
                              what is this serotonin cream?

                              and has anybody had any luck with cbd oils to reduce the nerve pain? thc skyrockets the pain and makes me not smoke anymore. but I am interested to see if the cbds would help at all

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