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seeking others w/ CENTRAL CORD SYNDROME

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    #61
    Hi Revis.....I am still learning where 'the wall' is, and hoping I can find the clues before I hit it. When I've reached the limit...it's like I come undone. I do have a chair for those days because I don't want to miss anything. I use a cane out and about. Inside the house I do a decent job without it.

    Chills hit me really hard. Life is a new adventure every day. I'm doing my best to make it through with a smile.

    I started out better but kind of screwed up and went downhill.....that said. Keep walking and moving forward.

    Lavi
    CCS/Walker C6...it's a long story

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      #62
      Originally posted by lavenderthistle View Post
      Hi Revis.....I am still learning where 'the wall' is, and hoping I can find the clues before I hit it. When I've reached the limit...it's like I come undone. I do have a chair for those days because I don't want to miss anything. I use a cane out and about. Inside the house I do a decent job without it.

      Chills hit me really hard. Life is a new adventure every day. I'm doing my best to make it through with a smile.

      Lavi
      Lavi, I like your attitude...facing the challenges as an adventure and a smile. My wife keeps telling me, "Attitude is everything." I know she is right, but when the blue days hit it's a struggle to overcome. Like you, I'm trying to figure out where the "wall" is, too. It's important for me because I'm working and starting to travel more. I froze up last Friday after working most of the day, then coming home and standing outside in cool air and talking to my neighbor. After that I was in pain for an hour. I lie in the floor or in my recliner when I get to that point. As the weather is getting colder I notice I'm having more episodes. It's supposed to hit a low of 28 tonight. Ugh. Winter is coming!

      I'm impressed with your use of herbs and vitamins. So, you know they work for you? I'm semi-skeptical, not because I don't believe you. Just not sure how to know what works and what doesn't. For example, I've been taking Alpha Lipoic Acid because it's been proven to help with neuropathy. Not sure it helps me. Would like to be totally off of Neurontin. Not taking that much as it is. 300mg once in the morning, and once again around 4:00 PM. Did take Amitryptiline for 2 or 3 months at night. Helped me sleep in spite of leg spasms. I could only take 12mg. Anymore and I was hung over the next morning. I stopped using it now since my spasms have subsided considerably.
      CCS/Walking Quad

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        #63
        Hey Revis! You all have such great attitudes - I wish my sister would have 1/4 of it!!

        OK, so I think a lot of my sister's issues have to do with the neurotin (2400 mg/day). She has been acting increasingly depressed, irrational, forgetful, etc. since they increased the dose. She is acting down-right freaky and saying odd things

        Called the doc to see about weaning it down and he's out of the office. Would it be safe to skip one pill today and talk to the doc tomorrow or wait!!?!?! I've been on the phone ALL DAY with my sister and my mom and other sisters, my niece. Everyone is really freaked out by her behavior. Almost considering taking her to the hospital.
        Last edited by mcs; 27 Oct 2011, 4:15 PM.

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          #64
          Her behaviour does seem erratic. I'm supposed to take about 1800mg of Neurontin during the day. I usually skip it. Too many prescriptions cause me to lose some function and I'm a bit out of control. I don't think skipping a Neurontin would be bad. Neurontin doesn't work that well on my nerve pain. Have they tried her on lyrica?

          If you need me...you know where I am
          Last edited by lavenderthistle; 24 Oct 2011, 3:13 PM. Reason: made an oopsie
          CCS/Walker C6...it's a long story

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            #65
            Hey! They put her on Lyrica in the hospital and took her off it after a day!!?!? Then they went to Neurotin. She was only on 600 mg/day for quite a while. After she went home she went up to 900 then 1800 and now 2400?!? She says she thinks it helps the nerve pain some (I just talked to her) but I just don't think it's worth the side effects she seems to be having. It's not my life though?!?!

            Would love for her to feel good for just a day. She has no hope!

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              #66
              I was on lyrica for a month pre surgery. Was switched to Neurontin...I have mixed results. Not to be a gloomy Gus, but she will have to come to terms with the pain. I'm new in the sci world, but not new to pain. A lot of it comes down to mind over matter. She has to find a happy place and go there to escape the pain. I try never to ask myself how I feel, or take a body inventory....thus the insomnia.
              I've dealt with physical pain on a daily basis for about 23 years. It wears me down some days, but I refuse to let it keep me there. I have too much I want to do.

              She has to come to terms with this, it won't disappear. It can't be wished or slept away. This is the new normal....BUT the first year (I'm still there too) is the greatest time to recover function. So tell her to find her fight, and set the example she wants her kids to see and to be.

              This is hard, but it's not insurmountable.

              It was about 6 months before I even cried or let myself feel. I got down, but the reality hadn't and probably hasn't set in fully. Has she allowed herself to feel?
              CCS/Walker C6...it's a long story

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                #67
                Originally posted by mcs View Post
                OK, so I think a lot of my sister's issues have to do with the neurotin (2400 mg/day). She has been acting increasingly depressed, irrational, forgetful, MEAN, etc. since they increased the dose.
                Thanks for the compliment, mcs. Like everyone else here I have good days and tough days. I tend to naturally gravitate towards the gloomy side. I have to battle that...exercise helps, even if it's just getting up and dragging myself around the room. Interacting with others is a great boost, too.

                I DEFINITELY believe a dosage of neurontin that strong will make your sister's depression worse. I never took more than 1200mg a day. Neurontin can be pushed pretty high, but everyone's tolerance is different. Is she taking amitriptyline at night, or something similar? That can also cause depression, although ironically it's an anti-depressent. With that much neurontin in her system I don't think skipping one during the day would hurt. I would urge you to take her to a neurological pain specialist or neurosurgeon for an assessment.

                Lavenderthistle is right in her advice. Unfortunately, the neuro pain is the new normal for most people with SCI. And, NOW is the time to be pushing it physically. Even if she went to a PT person once a week and negotiated a lower cash fee it would be worth it. Will be thinking about you in this...
                CCS/Walking Quad

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                  #68
                  One more thing, mcs. I noticed that your sister was also taking hydrocodone as recently as a month ago. I hope she is off of it now. That will not help her nerve pain. It will cause irritability, lack of sleep, and I believe depression. It was good for physical pain when I needed it but it can really cause problems because it's addictive!
                  CCS/Walking Quad

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                    #69
                    She is taking 2400 mg of neurotin and 40 mg of Baclofen a day. She also takes Flowmax (and hasn't tried to go off it because she's afraid to). She has Hydrocodone but doesn't take it often. I can't remember the name of the anti-depressant they have her on at night but it's NOT amitriptyline or similar. She said it doesn't work and she's waking up every night at 3 or 4am and not going back to sleep.

                    I'm going back there on Thursday and staying till Monday hoping I can do SOMETHING to help. Not sure what that will be though.

                    They want her to see a neurologist and have a brain scan to rule out a head injury?!?!?!? Wouldn't they have done that by now? I know they did one after the accident and it was fine? She is also going to see a psychiatrist. She is not happy about it but I'm ecstatic!

                    I know some sadness is to be expected but this is getting ridiculous. I want my sister back!

                    Hey Revis - what is Alpha Lipoic Acid? Do you take anything else besides the small dose of neurotin? If you don't mind me asking?!!?!

                    Are you able to work with you SCI? Anyone!? My sister doesn't think she's ever going to be able to take care of her (future) grandchildren!

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                      #70
                      Originally posted by mcs View Post
                      I know some sadness is to be expected but this is getting ridiculous. I want my sister back!

                      Hey Revis - what is Alpha Lipoic Acid? Do you take anything else besides the small dose of neurotin? If you don't mind me asking?!!?!

                      Are you able to work with you SCI? Anyone!? My sister doesn't think she's ever going to be able to take care of her (future) grandchildren!
                      Hey mcs...Yes, it takes time to deal with the new reality of living with SCI. I started having a better attitude around month 4 or 5, but it can still be a challenge on certain days. Family, friends and PT helped tremendously.

                      I don't know much about Alpha Lipoic Acid, just what I've read thru Google searches. I bought mine at Wal-Mart in the herbal section. Paid about $8.00 for a bottle. I do take it with a meal, can cause heartburn otherwise.

                      Yes, I work, but it's been a challenge. Fortunately I have a very flexible job. I've worked a lot out of my home via computer and phone. Started traveling for my work 7 months post injury. Will soon try flying. Pushing thru the pain & weakness when working is the biggest challenge.
                      CCS/Walking Quad

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                        #71
                        Are all the Central Cord Syndrome people away or asleep?

                        Anyway, was wondering if the rest of you are bothered by the transition from warm to cold as winter comes on...I've had more freezing moments this week than I've had in the last four months. I assume that's normal. Don't know if increasing the Neurontin intake would help, or not. I'm actually trying to wean off, which could be part of my problem, too.

                        Any thoughts?
                        CCS/Walking Quad

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                          #72
                          Hello I am new to the forum. I too have Central Cord Syndrome since a fall 6 months ago and still have some leg weakness however I am able to walk pretty well. My biggest problem seems to be the hand/arm pain and numbness. I am very sensitive to cold and wear mittens at night to sleep. I had surgery 2 level fusion surgery but my doctor feels I will continue to have the problems with my hands for life now. We have tried Neurotin, Noratriptiline, and Lyrica but nothing has worked. I worry about all the meds and the side effects what has worked for you? Has anyone returned to a full duty job i work as a nurse but haven't been able to return to work yet...any advice would be great.
                          ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

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                            #73
                            Originally posted by Revis View Post
                            Are all the Central Cord Syndrome people away or asleep?

                            Anyway, was wondering if the rest of you are bothered by the transition from warm to cold as winter comes on...I've had more freezing moments this week than I've had in the last four months. I assume that's normal. Don't know if increasing the Neurontin intake would help, or not. I'm actually trying to wean off, which could be part of my problem, too.

                            Any thoughts?
                            Weather changes do affect my Central Pain and others say the same thing.
                            2012 SCINetUSA Clinical Trial Support Squad Member
                            Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                              #74
                              Haha I just wrote about this in my thread 'season changes' the nerve pain hit again with ferocity, spasms increased...weakness a bit more pronounced. I'm keeping vulnerable areas warm. Gloves, scarves, socks, etc...I'm not giving up fall and winter. I'll plan time more carefully, and take things hour by hour. Warm baths rock. I've increased Neurontin at night. And the herbals during the day.
                              CCS/Walker C6...it's a long story

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                                #75
                                Originally posted by faceplant View Post
                                ...We have tried Neurotin, Noratriptiline, and Lyrica but nothing has worked. I worry about all the meds and the side effects what has worked for you? Has anyone returned to a full duty job i work as a nurse but haven't been able to return to work yet...any advice would be great.
                                Hello Faceplant (love your user name...) Welcome to CCC. I'm fairly new here, too. As a CCS person I think it helps to compare notes. You didn't mention how much OT you've done in an attempt to strengthen your arms & hands. My hands and arms gained considerable strength and dexterity during the first six months as a result of OT & PT. The meds, as you know, only help take the edge off the pain. Unfortunately, finding the right med & dosage is a cat & mouse game. You have to experiment and monitor the results. From what others have written here on CCC there is a good possibility you will continue to regain strength and dexterity but it takes time and pushing it. No guarantees, of course.

                                I'm working, but I don't have to stand much. If I had to stand all the time I couldn't do my work right now, I don't think. Hope you are able to make progress in the months ahead. 6 months is still early in this journey.
                                CCS/Walking Quad

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