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  • It's Enough!

    My pain has been really bad lately, and keeps getting worse. It's been over a year now. Im so sick of it, I can't put my clothes on my hypersensetive area, and when I do it's a torture.

    Is there any treatment available for pain? surgeries, or anything?

    I've tried neurontin, and it doesn't do ANYTHING, unfortunately, thats the only pain med we have here.

    I would like to hear your feedback on this.

    Max.
    Last edited by Neo; 07-16-2006, 08:56 PM.

  • #2
    i wish i had a word of wisdom for you, but i don't, i can only say i feel your pain...it just seems to be the card some us were dealt on top of sci..

    Comment


    • #3
      When we meet that dealer...
      Alan

      Proofread carefully to see if you any words out.

      Comment


      • #4
        Max, when you tried Neurontin, how high did you go with your dose? Did you take the name brand or a generic, some people who switched to the generic when it first became available said they felt like it was a bad move, that they needed the name brand version. Did you take it alone or in combiniation with other meds, such as an anti-depressant? It's common to have it be more effective when combined with something else.

        Also, describe how your pain feels. Is is burning, pins and needles, or what?

        Comment


        • #5
          justdildo, alan, thank you for your input.

          David, the highest i've been on is 1800-2400 which has done absolutely nothing for my pain, and the doctors here are afraid to increase it. The type I use is the name brand, I think, its a yellow package.
          I have been taking it alone, I didn't take any anti-depressant since my injury, Im actually considering seeing a shrink, as i've been really depressed because of my pain.
          My pain is more like burning and feeling like there's a weight on my legs, that pain I dont mind, the pain that is most horrible is at the level i start loosing feeling, Im a T9-10 and that is located just under my ribcage. The left side is kinda okay, i can bare touch on it, its not pleasant but bareable. The right side is THE MOST PAINFUL PART if i touch it accidently i could lose my mind from the pain, some times it has brought me to light tears. The worst thing about it its that its always there, it never goes away, when I ride in a car with someone its really frustrating as my clothes are rubbing against my painful area so now i hate going out. I can't drive my car anymore it's really disturbing.

          When something is touching that area its like a thunder stroke my legs, and the weight that i feel on my legs gets heavier. And sometimes that happens without even touching that area. It never goes away. it stays at a certain level and randomly goes up and down.

          I have given up on medication as I think that there isn't a med in the world that could reduce my pain. Im really considering a surgery if there is one, I don't mind flying over to the states to do it. just point me to the right direction.

          I really appreciate your help , everyone ,

          Max.

          Comment


          • #6
            this is kind of a long shot here max but would it be at all possible to reconnect or connect with a doc in the states somehow(i don't know if you were born where you live or are originally born here in the states and just moved where you now are for some reason?)but perhaps if you could do this,it would allow you to actually try some of the other meds out there besides neurontin.i know even at my final dose of 3600mgs neurontin just never ever worked for me at all,i got nothing,absolutely nothing from it what so ever.I am now on lyrica and for the first time ever i found something that actually even touches my central pain.that in itself is just amazing to me,and i am soo grateful.

            this is just mearly a suggestion.you said you would fly to the states for a possible surgery so I was just thinking that maybe it would really be worth it to possibly fly here to be able to try different meds that are not availiable to you where you currently live.the doc could just write the Rx ,have it filled and sent.you know,like the mail order pharms do?we do this for my son with all of his transplant meds.we just get a phone call once a month,they ask what we need that particular month,then its just filled and the meds are sent by fed ex or ups.just some suggestions for you as possible ways to try different meds.

            even getting your current doc where you live to write the Rx and have it sent to a mail order pharm in the states(there are many many different legal mail orderpharms here in the states that do this)may be a possiblitiy.just because the meds are not actually availiable there doesn't mean you cannot send the Rx to a mail order pharm,ya know what I mean?it wouldn't hurt to actually discuss this option with your Rxing doc.

            why should you have to be forced to stay on a med that is so very obviously not working for you thus leaving you to suffer thru life with this type of agony in your body 24/7,just because you happen to live in an area that offers you no other options?

            i hope this may work for you,its worth asking about and looking into a bit further anyway,at this point,what have you got to lose.I hope something like what I mentioned is actually possible for you.I DO feel for you Max,really.I know what you are having to live with is really the ultimate in agony.good luck and please let me know if something is possible for you this way.Marcia

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            • #7
              Max, why was the doctor afraid of raising your dose of Neurontin? For "traditional" uses of Neurontin 3600 mg is mentioned as the max daily dose. It's actually an anti-convulsive, so using it for neuropathic pain can be effective for many people, but that's an off-label use. Anyway, when used for pain, significantly higher dosages are quite common, I know of a number of people taking 4800 or more, even as much as 9600 mg/day. I'm not recommending you go THAT high, I'm not in a position to say that. It's a serious drug and has to be carefully titrated up or down. My first thought is that you might try seeking out a doctor more experienced in using Neurontin to treat neuropathic pain.

              BTW, I'm not sure what color the package or pills are, your pharmacist could answer that question.

              Anti-depressants can have a direct effect on neuropathic pain, as well as helping with the depression that comes with suffering from chronic pain. They are commonly combined with other meds, in this type of situation it's common to use them with something like Neurontin.

              Regarding surgery for neuropathic pain, be careful. Surgery is a permanent thing and there are some cases with some types of surgery, such as a cordotomy and even other less radical procedures, where the surgery is initially successful, then sometime later, perhaps a couple of years, the pain returns as bad or worse than before. I'm not saying it doesn't have a place and obviously all surgeries (and surgeons) are not created equal, but it's something very serious.

              Comment


              • #8
                Firesmurf, I guess that it should be possible to get meds from the states, I have though about it but never figured out how. Im actually from Qatar, born there, raised there. At the moment Im trying to get funding to go to the states for physical therapy. The therapy place that they have here is really pathetic. And I really haven't done any in a while. I could go on my expence, but there's a shot that I could get funded by them so Im trying that. If you could point me to a doctor that I could communicate with in the states that could prescribe me the pain meds, It would really be great. I told them here about lyrica, and they haven't heard of it. If I get the funding I'll be on my way to the states to get some real therapy and pain management. I hope so.

                The doctors here are pretty "PATHETIC", I really dont trust them and I didn't even do my surgery here when my accident happen, We flew to Germany, they didn't even fund that, which they should, but they said they could do the surgery here, but actually they don't, because we know people that died or got worse so we went at our expence. they like to experiment :-).
                I would like to thank you firesmurf, you're the one that always help me here in the pain forum, and I really appreciate your help and kind words, you're so kind.

                David, as i explained in my reply to firesmurf, the doctors here are not very good, when I talk to them about my pain they tell me that this is the first time that they saw a patient like me. Thats not very promising, I hope im not the only one with SCI in qatar. When i talked about increasing the dosage he was afraid, inexperienced maybe, he made start on 600 a day and after alot of convincing increased it to the dosage i told you.
                Im looking for a phycatrist at the moment, maybe the anti-depressants will help me, Im not seeking him for that reason though, Im really having a hard time sleeping and always feeling depressed. But it might help my pain.
                I don't think that i'll go through with surgery, for the reasons that you stated, I don't like to take chances.
                Thanks alot David for your help, and if there's any doctors that you know i could communicate with to get pain medication please refer me to them.

                Max.

                Comment


                • #9
                  Max,

                  You must remember that those at this site include a vast range of those with central pain, ie. nerve injury pain after spinal cord injury or the like. Some of them will report benefit from anticonvulsants or tricyclic antidepressants. Others have actually had pumps inserted into the epidural space where meds like Prialt or others work. Mostly the benefit seems to be concerning the lightning and muscle pains. Those who cannot tolerate the touch of clothing do not seem to be posting much that is hopeful.

                  I have pretty much been around the world, including to the guys who do deep brain implants and have had magnetic stimulation. NOTHING works for me except to sedate myself (I use Klonopin) to try to duck these feelings you have. From what Alan has posted, he is pretty much in the same boat in that nothing works for him. You are not going to be very popular with your doc if that is the kind of Central Pain you have because he will feel no reward for caring from you.

                  As to whether you could get better care anywhere in the world, I frankly doubt it. However, occasionally I hear from people who go on the wild goose chase and actually come up with something. The National Institutes of Health has taken the position that there is no satisfactory treatment for Central Pain. These are the top pain scientists in the U.S. However, there are literally hundreds of pain clinics doing land office business with many Central pain patients. This is in contradiction of the NIH, but then again, desperate people will grasp at anything.

                  You can either cynically decide the pain clinics are not really able to help, as the NIH states, or you can figure the NIH doesn't know everything. Since nothing has helped me and I have been to many of the places I see praised on this site, I tend to back the NIH. The pain clinics are not able to deliver. I have been to some pretty good places and the top people. They all agree that CP can be untreatable. The NIH recommends making your life as stress free as possible.

                  Dr. Young has made allusion to survival strategies here so I suggest you go back through his posts, especially the one about lowering expectations. There is work going on to develop an oral N type Calcium blocker. I am pinning my hopes on that drug, but it isn't here yet. If you are very rich, you could have a pump inserted with Prialt dosing: OR, you could wait until an oral form is developed. The N type calcium blockers may very well be the first, for me, effective treatment for Central pain. The burning from light touch of clothing you describe is a hallmark for SEVERE central pain.

                  Most can still wear clothing. If you cannot, you can consider yourself a severe case. Severe CP is the worst pain state known to man. I recommend patience, because if there were anything that works out there, I would have found it in my twenty years of searching. You will go through a period when you ask why you are alive, and you probably won't answer it, but you will probably decide you can remain alive without knowing why really. I think many of the severe cases come to this.

                  We are waiting and must find a reason each day, not a reason to go on, but the making of the choice not to think about whether we will go on. Solutions are not available. Distractions are your only hope, in my opinion. I am among the most negative here, but I think you will find after time, fairly accurate. Alan also has CP in his gut. I have it in my bladder. We are pretty much a wreck. Sounds like you are also. Read the other pain sites for central pain, such as David's and the sister sites. If you are religious, ask God for help. Don't ask him to explain it to you because suffering is not explainable to man, at least not to me. I do believe God helps us survive, but it is mostly up to us. Best wishes to you there in Qatar.

                  The nearest good pain clinic to you is in London. You can log onto PubMed for abstracts of the world's literature on central pain. This site also helps you identify the docs with a real interest. I would wait for the N type calcium channel oral pills to come out and then probably we will all get some relief. They should have that medicine in Qatar about as soon as any of the rest of us get it. It is owned by a Canadian firm which is being financed by a German firm, so keep your eyes open.

                  Comment


                  • #10
                    Max, just a reminder, if you want to keep an eye on pain research in the literature one simple way is to read the abstracts Dr Young posts in the forum here on Neuropathic Pain.
                    /forum/forumdisplay.php?f=42

                    Comment


                    • #11
                      hey Max , my name is Larry , I know just what you are going through , I got hurt in 1985 and have had cronic pain since , surgery isn't always the answer so far I've had 23 operations and still have cronic pain , I've had 7 back operations , that ended up making my bladder misfunction , I have a Neuogenic bladder so I had the mitro stoma operation and that didn't work so they did a bladder bypass (ILEAL CONDUIT) they took a piece of my intestien and had that go from my kidney to a Stoma on the outside of my belly , nowI have to wear a bag to collect my urine then when the bag gets full I drain it ,my Bladder doesn't functioin anymore ,and all those back operations have made my knees also go bad I had to have reconstructive knee surgery on both knees ,and that didn't work either now I'm looking at knee replacement , I just turned 50 july 12 and have to live like this the rest of my life , if I had a chance to do it over again I wouldn't of had the first back operation , knowing what I know now ,well good luck and give it a real deep thought and get at least 3 opinions ,if you want to email me feel free LBUSH47@YAHOO.COM

                      Comment


                      • #12
                        Max,

                        for encouraging words on another possible cure, resiniferatoxin, which David described in a prior post, go to painonline.com, and see the Comment by jrueus to the article. "People with Central Pain are Weird"--to update on the status of RTX. RTX is where the NIH is heading right now. You cannot get it yet at any pain clinic, so be patient.

                        Comment


                        • #13
                          dejerine, Wow, I didn't expect it to be that bad, I mean it's horrible, but not to that extent. Afterall it's been a year since I first felt this, But I hope that will be something for it soon.
                          About the pump, money is not an issue, I will look it up. Is there anyway to diagnose this as the type of pain that this pump will help with. How invasive is pump surgery ?
                          I can wear clothing when I go out, I tend to forget the pain If im having a good time, Sometimes It gets too painful, but then It returns to its regular state, Which is still bearable, Its those moments when it hits the maximum level that I cannot tolerate.
                          Its really not up to me to decide if pain clinics wont help, as i said before, we do not have them here, and I didn't have this pain when I was in germany, although when i got out of surgery my doctor was concerned and asked me about it, I didn't know what he was talking about. A year passed with me not feeling any type of pain, then it started happening. It only has been 2 and half years since my accident.
                          I hope that I don't get mentally to the state that I ask my self why I'm alive, I still have some hope, for a better future.
                          Please let me know If you any of the meds you talked about is in production, Or if you found anything that helps your pain.
                          Thanks alot for your input, much appreciated

                          David, I'll make sure to check Dr.Wise's posts. Thanks.

                          LBUSH49, Im gonna make sure to get peoples opinion before I decide to do surgery, I really thank you for your advice, and I wish you the best.

                          Max.

                          Comment


                          • #14
                            yep,LB is soo right.i would never ever go thru any surgery knowing what I know now either without getting those seperate opinions.i went into my herniated disc surgery wayyy to quickly thinking i would just "get it out of the way and move on with my life"big mistake there.

                            i hadn't tried PT or any other options.although I did have the cavernoma inside my cord right below the herniated disc,and saw one suregon before that second one who actually refused to even touch my disc issue unless he could remove the cav first.that would have involved major in depth surgery on my cord just for a disc fusion.i said no thanks and moved onto the second NS who said he could do it.so I dove onto it just to have it "done'.

                            that NS did my surgery but it was one ongoing nightmare after that with non fusion and another surgery to plac hardware to hold the area together so it would eventually fuse.well this NS ,when he blindly placed my plate and screws(it stated in the op notes that he could not actually visualize the area because of the imense amount of scar tissue there from the first surgery only nine months prior)he actually impinged my c 7 nerve root.it was all down hill from there with ongoing extreme pain with him seeming clueless in any way to try and help me and insisted that despite the fact that he knew I was having this horrid pain,he just couldn't say why.well I found out 'why' when I had to have my cav removed and that particular NS(he was my third opinion)actually saw with his own eyes while inside my cord,or on his way into my cord,just what the first NS had done,so he 'unimpinged "the nerve root for me(thanks doc).

                            the thing is,if I had actually had the sense to wait for surgery until i had actually tried and failed with other modalities,i never would have lost two full years of my life to just wanting to get it over with.we didn't have the computer or the net back then or I definitely would have researched my other options before consenting to the fusion right away the way I did.

                            when i found out my cav had bled twice and needed to come out,well you can bet your ass I got on the PC and researched everything before even consenting to that surgery.i also obtained three seperate opinions as well.i ended up with my current nightmare tho,and that definitely sucks,but going into the major spinal cord surgery,i felt confident that i had made the right decision,i actually really didn't have a whole lot of choice in having the surgery as to let it go would most certainly resulted in total paralysis when the third bleed happened,i was just running out of cord space.but getting those three opinions,well I knew i had at the very least,looked at all my options.

                            If there is ever another way to treat something without having to actually undergo some form of surgery,it should at the very least be tried first just to see if that way may have worked before placing yourself in that position along with the huge list of risks associated with certain surgeries.almost ALL of my major medical problems and the resulting syndromes are all from the surgery.some just couldn't be avoided,but some I DO wonder about,but it just totally devistated my world the second my spinal cord was dug into.

                            just make sure to fully research ALL of your options Max,before actually 'doing' anything that you cannot reverse,like surgery.in many cases,surgery just makes a bad situation much worse than if you had just left it alone and tried some less invasive approach.just be sure it is your only real option.then like i said,fully research it before consenting to it.and ask alot of questions of your surgeon.I had three very full pages of questions i needed answers to from my NS before I could really comfortably consent to this dude digging around inside of my spinal cord.

                            Good luck Max,Marcia

                            Comment


                            • #15
                              HI Max,
                              Have you ever tried tegretol for your nerve pain, I used to take it and it worked somewhat for the pain but I have found that for me the neurontin is better, but maybe for you the tegretol would be better, let me know if you have tried it or not and I can give you a link to some info on it.
                              W4Me

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