Announcement

Collapse
No announcement yet.

Neuropathic pains, Medication advice.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Neuropathic pains, Medication advice.

    Hi there,

    Where I'm at now: My injury is pretty recent, about 6 months ago now, just got out of rehab before christmas! Doing pretty well so far, getting a car sorted and just ordered my new wheelchair to replace this NHS tank! Going back to college and work soon and looking forward to a bit of normality!

    Ok, so I started getting these pains about a few months into rehab, the best way of describing it is like a really intense pins and needles, or sometimes a stabbing or cramping type pain. It seems worst in the evenings when I'm starting to wind down. It's worse some days than others. What should I expect from these pains? I guess everyone's different, but are they likely to get better/worse? At the moment I can just about push it to the back of my mind, but if it's the fast stabbing type pain I can't hide it and I don't like letting my family/friends see I'm hurting.

    Currently I'm on:
    Pregabalin aka Lyrica 75mg x2 (I understand this is a fairly low dose?)
    Amitriptyline 25mg at night (again fairly low)

    Any thoughts on these? I've seen people have had some problems with the higher dosages of Lyrica so I'm reluctant to put that up too high, and Amitriptyline is a anti-depressant (side effect is calming nerves) so I don't want that messing with my emotions if the dosage is increased by much.

    Since the pain seems to have got steadily worse it's hard to tell if the drugs are actually doing anything, so I might try stopping them for a couple of weeks and see how intense the pain is then to get a benchmark.

    Anyway, any thoughts or ideas will be much appreciated. Cheers!
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

    #2
    For the stabbing pains good old opiods are very effective. Oxycodone, methadone are your friends. Welcome to care cure, btw!

    Comment


      #3
      Thanks for the advice and welcome! Are they just to take when it's bad or would I need to take it daily? Have been taking paracetamol when it's been bad but it hasn't helped much if at all.

      Cheers, Si.
      T11 Asia A after near-fatal bike crash.. Just happy to still be here

      No, I didn't loose my mind... It got scared and ran away!!

      Comment


        #4
        I would ask about a narcotic (oxy) when things are bad. You don't have to take those regularly if you don't need them. The lyrica dose is still pretty low if you wanted to increase. You can always go back down if you get side effects.

        I wouldn't keep taking paracetamol if it's not working. While not a strong med, if taken to frequently or too high of a dose it's quite bad for your liver. I only take it for headaches, it doesn't work for any other pain. But even for headaches I like to keep it at a minimim. If you are prescribed a narcotic for breakthrough it might have some paracetamol in it so make sure if it does you aren't taking more on top.
        Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

        I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

        Comment


          #5
          Originally posted by SuprSi View Post
          Thanks for the advice and welcome! Are they just to take when it's bad or would I need to take it daily? Have been taking paracetamol when it's been bad but it hasn't helped much if at all.

          Cheers, Si.
          Yeah, tylenol (as we call it here) won't do much at all. As for narcotics you should take as little as necessary, they have unpleasant side effects and everyone is different as to how much and when to take them. I take methadone daily and oxycodone as needed. Pain is a huge variable for people with SCI, I am three years post and still struggling to find a good regimen to control mine.

          Comment


            #6
            Some good news is that there are very nice knowledgable people around here struggling with post SCI neuropathic pain and have a lot of empirical data and personal experiences with different regimes that can help you.

            Some bad news is that the pain won't likely go away. It can get very bad where it is a challenge to get through the day and not get depressed, isolated, resentful, and exasperated from this daily problem.

            I have had this problem for 10 years since my SCI. I took 25 of amitriptyline at night, and Lyrica 75 3 times a day and at one time, up to 150mg 3 times a day as well as oxycodone for breakthrough pain which was on a daily basis. Many people believe Lyrica should be taken 3 times a day due a short half life of 6 hours and it can wear off. I would move to 75 3 times a day to start with. I also use ambien to fall asleep as the burning is intolerable as I lay down and prevents me from sleeping unless I have a medication for sleep.

            I recommend getting sufficient sleep and keep stress down. I would start a meditation practice if you can. There is evidence that this helps. I would use distraction as the main way you can get relief. Including working, music, TV, getting outdoors and doing sports, exercise, driving fast cars, anything to get your mind off the unrelenting burning. I am finding work to be a great distraction.

            I would warn you about the isolation you will feel having an invisible problem that no one without neuropathic pain, including doctors really understands how severe and time occupying this problem really is. It is very isolating and as you said already, you don't want your friends and family to have to hear about it a lot. In a few years, they will tire of it and won't want to hear about it anyway, they will be frustrated at their inability to help you.

            Despite this, neuropathic pain has defined 75% of my waking moments, affected how I see everything. Only in the last 6 months, have I felt marginally well enough to begin a Trial Work Period as a medical consultant for SSDI and I need to be sharp.

            I don't want to sound like a 'Debbie Downer', but do want to be realistic.
            My advice would be not to be stoic, take meds that you have to in order to have a semblance of a life, no one will give you a badge of honor for not taking meds and toughing it out. Also, if this problem persists, day after day, even the strongest of us will get worn down.

            Like t8burst said, he is still trying to come up with a good regimen after 3 years, and I am still trying at 10 years to tweak what I take to avoid side effects and get better relief. I still suffer ever day, if I tried to avoid that, I would be taking meds and be a zombie and not think well.

            Comment


              #7
              Thanks for the replies everyone, it's really helpful to hear from others sharing the same experience. You're definatly not being a debbie downer arndog, that's exactly what I needed to hear. Some great advice in there!

              Looks like I've got a long road ahead of me then, I'll start of with changing the Lyrica to 3x daily and I'll look into meditation. I'll talk to my GP about oxycodone, that sounds pretty helpful if i'm having a bad day, and it looks like I need to get to bed a bit earlier!

              I'll post back soon with how it's going.

              Thanks again,
              Si
              T11 Asia A after near-fatal bike crash.. Just happy to still be here

              No, I didn't loose my mind... It got scared and ran away!!

              Comment


                #8
                Wow Arndog your post says it all for me. Thanks for putting into words exactly what I have been feeling and experaincing the past 5 years.

                I read this forum but do not post very often. Also I am from UK and the whole health system and access to pain management seems very different to how things are organised in the USA. I am not very good at using forums, I never feel have much to contribute, but your post was so resonate of my experience with central NP I just had log on to post my thanks. I am sure that I am not alone in finding your sharing so spot on!


                I so agree about splitting the Lyrica dose, my pain management consultant has at last listened to me about this, she used in insist on 300mg in am and pm rather than dividing it over 3 doses which I find much better. I also take oxycontin extended and oxynorm immediate release for breakthrough. I take 25mg Amitriptyline at night but take “holidays” from it as it makes my already loud intrusive tinnitus even louder!


                I wouldn’t wish this nightmare on anyone, but that said I still try and squeeze ever bit of enjoyment I can out of every day.


                Hi SuprSi, you have been given great advice, without the mix of opiods/narcotic pain medication and the Pregabalin (Lyrica) and Amitriptyline my pain would be unmanageable, for me it is the mix of the three different types of meds that work. I used to take Tramadol (both extend and immediate release types) but now use oxys. The Tramadol was a great mix with the Pregabalin (Lyrica) but it is not a good idea to take it with Amitriptyline (possible serotonin syndrome problems). Keep on asking to try different combinations of medications until you find the one that works for you. We are all different. All the best.
                Lu

                Comment


                  #9
                  Thanks Lu, glad you got something out of the thread too. I totally agree with trying to get the best out of each day! It seems to be very 'trial and error' from the doctors point of view, so posting what works for you is very helpful to get a starting point.

                  Cheers, Si.
                  T11 Asia A after near-fatal bike crash.. Just happy to still be here

                  No, I didn't loose my mind... It got scared and ran away!!

                  Comment


                    #10
                    Great post arndog. Old school quadriplegic here from the days when there didn't seem to be much neuropathic pain. More complete injuries were probably the reason. I went from no pain to excruciating neuropathic pain in my shoulder from a syrinx. Lyrica seems useless so I'm going onto gabapentin. My solution right now is oxycocet with medicinal marijuana brownies. Very effective, and the only side effect is a big smile.

                    Comment


                      #11
                      I tried Lyrica 100x4. Worked great tor me, a friend supplied. The Doc put me on Gabapentin, up to 1800mg(600x3) as of yet no joy, I'll be working on the Doc to switch to Lyrica. Keep trying Lyrica. I'm post 5 years,
                      T12 incomplete.

                      Comment


                        #12
                        Thanks for all your help and advice!

                        After taking the Lyrica 3x daily instead of twice daily for a week now, the pain seems to be easing. I need to get myself into a good routine of getting to bed on time now, was out partying til 3am the other night and I paid the price the next day, it was excrutiating. Was worth it to get out and have a good time I think.

                        I still need to talk to my doctor about Oxycodone, might be tricky getting it in the UK. Also a friend is getting me some erm.. herbal stuff :P to try! Got a few ex-friends that went way overboard with that so gonna be careful and use only when needed.

                        On a side note I've spent a lot of time down the gym to vent my frustration and my upper body is coming along nicely and i'm back up to 11 stone (went down to 9 stone in hospital and was 13 stone before accident) Need to give floor to chair transfers another go me thinks.
                        T11 Asia A after near-fatal bike crash.. Just happy to still be here

                        No, I didn't loose my mind... It got scared and ran away!!

                        Comment


                          #13
                          Originally posted by TM Girl View Post
                          I used to take Tramadol (both extend and immediate release types) but now use oxys. The Tramadol was a great mix with the Pregabalin (Lyrica) but it is not a good idea to take it with Amitriptyline (possible serotonin syndrome problems). Keep on asking to try different combinations of medications until you find the one that works for you. We are all different. All the best.
                          Lu
                          I have taken an 60mg SSRI and Tramadol for years. My doctor and
                          said you have to take a high dose of it to get Serotonin Syndrome.

                          http://www.pharmacologyweekly.com/co...tonin-syndrome

                          Tramadol is very good when combined with an SSRI but mine has ceased to work over the last year. .

                          I will see what combination, I come home with on the 27th as I am going to have to change my regimen due to increase in Central pain this last year.

                          I think you can get to the point where you develop a tolerance for all drugs. It has been that way with bladder meds.

                          What is strange is that the first 15 years of my injury, I was able to just bare the Central Pain and now I can't. The last 8 have been a steady increase in pain and a decrease in my tolerance level to pain. I don't even feel ear infections so I know I have a high pain tolerance. It takes my concentration away and I have become more forgetful. It is hard to explain that to family. I don't talk to anyone in my family about pain but they have all noticed the changes in my ability to remember and concentrate. I had a high stress job that I have been doing off and on the last 17 years and I gave that up because I just could not concentrate enough to manage my employees.
                          Last edited by darkeyed_daisy; 16 Jan 2012, 3:22 PM.
                          T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                          My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

                          Comment


                            #14
                            Does anyone have any info or links on good meditation techniques? A quick google search just threw up a lot of sites offering personal tuition for a fee, which I may be prepared to resort to if it's worth doing.

                            Edit: Well the weed didn't work so well. I guess because it was my first time I had a very intense high that wasn't particularly pleasant and the nerve pains soon returned after it wore off. I think I'd prefer to have a clear head and deal with the pain rather than getting high all the time.
                            Last edited by SuprSi; 25 Jan 2012, 9:23 PM.
                            T11 Asia A after near-fatal bike crash.. Just happy to still be here

                            No, I didn't loose my mind... It got scared and ran away!!

                            Comment


                              #15
                              Neurological Pain - 10 yrs relief with Tramadol

                              I'm new to this site. But I was interested in the pain comments. I've been a complete C-6, C-7 quad for 36 years after being hurt in a car accident. My pain started slowly after 5 years. At first, working on my MBA and then my CFP and my own Registered Investment Advisory (RIA) firm; I kept my mind off it.

                              But, it got worse and worse to where I couldn't ignore it any longer. I tried everything except medication. Acupressure, acupuncture, massage therapy, hot mineral baths, Chiropractic, electrical stimulation, hyperbaric oxygen therapy, allergy treatments, treatment for yeast infection, I've taken every herb including pot, eaten and not eaten and drank everything, I have a colostomy because I thought the pain was related to bowl programs and finally ... I had a major 10 hour long decompression spinal surgery. Although every specialist in each of these areas assured me they could get rid of my "internal burning/cold needles type pain" nothing really helped the pain. Thank God at least nothing hurt me.

                              I'm married, my wife (of 32 years) has done my care for me every day for 36 years (yes, social workers that does work) we were "going out" before I got hurt. I own 5 businesses and run 3 day to day, I work 12 hour days plus and haven't even had even a bladder infection in 15 years. We have two adopted children 9 and 15. Enough of my background … let’s move on to pain medication.

                              One day when my daughter was five or six, she wanted to go outside to play. It was a cold day (with the burning pain, cold makes it twice as intense) and I made up an excuse why I couldn't go play with her. I realized that now the pain was effecting her life; the next day I saw my Doctor and said, "I'm ready to try some pain medication ... but no addictive stuff." He tried a number of things including nutropin(sp). Nothing worked at all.

                              A salesman left him some new Ultram (Tramadol) samples. He said, "Try these, they are a new type pain killer and they aren't supposed to be addictive." This stuff worked amazingly well. I couldn't even believe it. I started taking a half of one a day ... if I took a whole one it kept me awake. How could a pain pill keep you awake? My theory was that I had gained a huge amount of energy because I wasn't fighting pain all day. If I took a whole one, even though I was awake, I enjoyed it because I could relax without pain. It wasn't 100% gone but it was 80%-90% gone, the intensity was gone and it was so, so much more tolerable.
                              I learned over time it works best to take the Tramadol regularly. Taking after pain starts doesn't work nearly as well. At first they make you a bit loopy. But that wares off over time. Also, over time, I had to take more and more of it for it to keep working. It probably took two to three years to slowly get to a level dose. Now I take 2 at 8am - 2 at noon - 2 at 4-5pm and 1.5 at 10-12pm. By-the-way, the loopy feeling goes away once you level out at the right dose for managing your pain. As a side note Tramadol never gave me constipation ... and normally, I'm very sensitive to constipation.

                              Now I've been at the same dose for 7 or more years. My pain is under control and I have no problem working ... where my decisions can mean a lot of money. But, the drug rep was wrong about one thing ... Tramadol is addictive and if you get too far past your next dose you'll know what withdrawals feel like (not a good thing). Interestingly, the longer my dose has been level ... withdrawal symptoms seem to be going away. I don't think it would be very hard to quit Tramadol. The pain coming back would be worse than the withdrawals.

                              Comment

                              Working...
                              X