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    Old 03-22-2005, 10:47 AM   #1
    ycadena
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    Question Question about Neuroutin

    My daughter has been taking Hydrocodone for her pain in her thigh. Lately the RSD has spread to her lower back. She is in so much pain the Hydrocodone is not helping her at night. Her dr prescribed Neuroutin same time he prescribed the Hydrocodone. He said don't get the neuroutin filled unless I had to. Well, I think I have to now because nothing is helping her w/the pain. Her lower back is so sensitive to touch. I called the dr today & he said to go ahead & get it filled. Does anyone know anything about neuroutin? I'm sorry. I'm new to this whole RSD. The pain is really bad especially at night. She is due to have her 2nd nerve block done in a week. Someone please let me know what you know about this medicine.

    Thanks,
    Yolanda

     
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    Old 03-22-2005, 01:58 PM   #2
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    Re: Question about Neuroutin

    Good afternoon,

    I hope your daughter is feeling better, and i would start her on the neurontin.

    We all on here are on either the neurontin or Topomax which are used for the same reasons RSD. Dont be freeked when you get it filled and it says that its for seizures, you got the right stuff. The neurontin works on the brain and helps with the nerves that controll the RSD. I have been on it since my diagnosis of RSD and if i go off it I think my RSD pain would be even higher then it is now.

    She will start on a low dose and slowly work up to a higher dose. Right now i am on 3200mg a day. I would try the neurontin and it will take a couple days to get the full effect from the meds, but i would deffinetly get her started on it. I am also on Hydrocodone (Lortabs) and they aer like candy to me and dont touch my pain. My RSD is in my Right foot and has spread to my other foot (not as bad) and also in my lower back. Also ask your doc about Lidoderm patches for her back. I live on them when my back flares up so bad that i cant wear pants or anything aroud my belly/back. They are patches that you put on your back and they numb the area and help soo much wit hthe sensitivity to touch! Also warm soaks in the tub when it gets really bad. My doc told me that any med's for pain wont take the pain away because the RSD works on different receptors then the pain meds do and no matter what they give us it wont take the pain away.. thats the evilness of this disease.

    Hope i helped and if i can help more ask away...


    Amber

     
    Old 03-22-2005, 03:29 PM   #3
    Bob A
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    Re: Question about Neuroutin

    I agree on the affects of Neurontin. I am taking 2400 mg. a day. As for the Hydrocodone, it makes me sick and does no good for the pain. I tried the Lidoderm patches and couldn't stand the touch of the patch. I also take 2400 mg. a day of Skelaxin and 2400 mg. of Ibuprophen. Hope this helps.

     
    Old 03-22-2005, 04:57 PM   #4
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    Re: Question about Neuroutin

    Thanks Amber & Bob
    Amber,
    My daughter was using the lidoderm patches on her thigh before she had the nerve block done and they did help her, but for some reason now when I tried to put them on her again on her thigh she said the pain got worse. Maybe because of the nerve block? We did try them on her back last night & It hurt her too much to have anything on her back. This will be the first nigt to try the neurontin, but like you said it will take full effect in a couple of days. I just hope the 2nd nerve block does help her. She is only 12 yrs old & I just feel so bad for her. She was so active & loved being outside running around. If this doesn't work I really don't know what next step to take.

    Thanks for your support,
    Yolanda

     
    Old 03-22-2005, 05:27 PM   #5
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    Re: Question about Neuroutin

    Yolanda,

    Im not sure why the lidoderm patches hurt after the blcok. but with RSD it could all be nerve related. Im sorry to hear how young your daughter is... i was 24 when i got this and its been 3 long years and have been through soo much.. and hope the best for your daughter and that the blocks will put her into remission soon!! How long did the blocks work for her? and did you doc tell you the warm soaks or baths with epson salt in the water helps alot and takes some of the pain away for awhile.. i live on them when my foot starts to flare up bad and cant sleep or anything and i soak it in the tub with the salt and it makes it calm down alot.. might want to try that with her back and then put the lido patches on right after. Also another good med that i have tried is Baclofen... it helps with the hard pain and twitches or muscle spasms.

    I have 2 stimulators implanted because mine is so bad and fast. i have a spinal one nad the other one is called a peripheral stim and its in my leg. Hopefully she will not need this but just prepared to have this suggested as a possibility. Another thing that helped me after the blocks stoped working for me was the epidiural infusions. It is when i was admitted for a week in the hosp and had an epidural for the whole week with the meds going in contiuous and you dont get the nasty side effects of the meds if they go directly into your back. For the first time in a year i was pain free for that week and was in PT to try adn loosen my foot up , because its frozen and also severly inverted and i cant wiggle my toes bc it has aten all the muscles up. But once it came out i was back to the horrible pain , but my doc said that usually puts pepole in remission, and i wasnt able to becasue mine was so far advaced by the time i saw my new doc , but he had to try it....

    Good luck and give your daughter a gental hug for me and wish her the best... and if you ahve anymore questions at all ask away... we all here have been through it at one time or another and glad that we can help someone throgh this.!

    Talk to you soon!!

    Amber

     
    Old 03-23-2005, 11:04 AM   #6
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    Re: Question about Neuroutin

    Amber,
    The nerve block maybe lasted about a week. I do admit the pain is not as bad as it use to be, but it is still there. Now her back is starting to hurt. We did do the bath soaks when her thigh hurt her so bad. I should try it on her back when her pain is so unbearable. She is on crutches, she's been on them for about 2 months. All this is happening on her left thight & left side lower back. She can't go to school because sometimes her whole leg falls asleep. So she is on homebound schooling.

    Thanks,
    Yolanda

     
    Old 03-24-2005, 02:07 AM   #7
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    Re: Question about Neuroutin

    Hello Yolanda - In addition to Neurtonin I am on Clonmazepem which is also a seizure type medicine but stronger than Neurontin so you do not have to take as much. I could not handle more than 900 Neurontin a day as it upset my sleep. If she is not sensitive to cool water, try taking her to a pool and have them put her in with the hydrolic chair using a noodle between her legs for floatation (a flotation belt gives her more freedom but it might touch her on the back but a noodle works too). The sense of freedom and ability to move is much greater in water and may keep her muscles from atrophy. Was a God send to me and decreases my pain every time I go. Good luck.
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    Old 03-25-2005, 02:08 AM   #8
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    Re: Question about Neuroutin

    I haven't posted on here before, but I have found myself lurking around this forum at 3 am when I can't sleep. When I found your post I felt compelled to respond.

    I am a 16 year old girl with RSD. It originally started in my left foot after a fracture when I was 9 years old. I was put on neurontin and elevil originally, but was non-functional on both of the meds. I don't know how sensitive your daughter is to meds, but I am very sensetive to meds, and both of those meds are very powerful for a younger person. I also had two lumbar sympathetic blocks which seemed to work for about a month and then the pain would come back. However, both the blocks were very traumatic for me, so my parents looked for any other alterntive there was to the traditional pain management treatments. I am eternally thankful that they did that because had they not, I probably would have been on morphine before I got to middle school.

    I was able to keep the RSD managable for quite some time, and I was lucky in that it didn't spread quickly. Stress plays a key factor in the pain causing my RSD to go out of control when I hit high school. That's when my parents took me back to a pain management dr because we had run out of all the alternative treatments we knew of in town. The pain dr then put me back on all the meds and did 2 spinal blocks and 2 radiofrequency thermal coagulations (RFTCs).

    After those, I kept having pain, and the pain dr kept saying that it was all in my head because I had had the problem nerves burned. That's when my parents went searching for things out of our city and found a dr in Texas who invented a sympathetic therapy system (STS) unit that treats the cause of RSD, not just the symptoms. I will say that I am still in Texas working with this dr, and so far my RSD has gotten worse, but that is what's supposed to happen before it gets better so that the nervous system starts a healing process. I do have a friend though that I met at the clinic who was 13 at the time she first came to the office and had only had RSD for 6 months before going and she was pain free with in a month. I am taking longer to heal because my nerves are so messed up from the sympathectomys.

    I just want to encourage you and your daughter to not give up and keep looking for things that work for her other than meds because I know from first hand expierience that it is no fun to go through school on heavy medication and on the homebound program.

    I will keep your family in my thoughts and prayers,
    Amanda

     
    Old 03-25-2005, 10:43 AM   #9
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    Re: Question about Neuroutin

    Amanda,
    Thanks for your prayers. I feel so helpless. I wish I could take this pain away from my daughter. She is due to have another nerve block next Friday. If this time it doesn't work then I don't know what we'll do next. The meds really don't help her at all. But, what can I do. Like I said before she cannot put any pressure on her leg, if she does she gets a shooting pain up her leg. I try to get her to exercise as much as she can. We do live in Texas & wish I knew that I was taking her to the right dr. She is under the care of a pain management dr. He has even said he has consulted with other dr's to see what they think. So, that is kind of telling me he really doesn't know if this is RSD or not. He says he is leaning toward thinking this is RSD. These are her symptoms: Her thigh is very tender to touch, recently her lower back became the same way, she gets a tingling in her thigh then it falls asleep, sometimes her whole leg may fall asleep. The pain she describes is a burning pain. The extent of the pain is from right below her knee to her upper thigh. These are all the symptoms she has. This all started by her knee hurting so I took her to a bone & joint dr. An MRi was done and a 9x9mm cyst was found behind her knee on her legaments. This dr told me to have her do pt & this would shrink or disolve the cyst. Well, come to find out the PT told me that it would not. By then she was even in more pain. So, I took her back to the same dr & basically told me he did not know what else to do. So, then we went to an orthapedic surgeon. He gave her a steroid shot in her knee. This I think shrunk the cyst, But then then this is when she started to get the pain in her thigh. Her knee doesn't bother her as much anymore, now mainly her thigh & lower back. Then we got referred to the Pain Mgmt dr. Her referred her to a neurologist to have an EMG nerve study done & all the tests she has had done have been normal. She had x-rays,MRI,Bone scan. All are normal. We are back with the Pain Mgmt dr now.

    So, anyone out there what do yall think? Is this RSD? What else can we do? The pain Mgmt dr does not want pt done at this time.

    Thanks for all of yalls support.
    Yolanda

     
    Old 03-25-2005, 10:51 AM   #10
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    Re: Question about Neuroutin

    Yolanda,

    I live in Upstate NY nad my doc has runn out of options that he can think of to help me , so he called a BIG doc in TX that specializes in RSD and has done lots with it. His name is Dr. Gabor Racz in Lubbock TX. He is highly reconized and you can search his name on the net for more info, but he has been in on my care on my RSD for about a year now and hes awesome!!


    Amber

     
    Old 03-25-2005, 11:17 AM   #11
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    Re: Question about Neuroutin

    Thanks Amber:
    If this next nerve block doesn't work then we will be looking for more options from other dr's. It's just hard to know if this time a dr is going to be able to help. I hate switching dr's, but if this is what we have to do to get our daughter better then we'll do anything.

    Thanks,
    Yolanda

     
    Old 03-25-2005, 12:03 PM   #12
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    Re: Question about Neuroutin

    Yolanda..

    dont worry about changing docs or even seeing another one for a second opinion. I have been through 3 docs since being diagnosed with RSd and there are many of us that have seen more then tht. I dont really think that one of us stayed with the first doc. I had to find a doc out of my area adn i drive an hour and 1/2 to see him and also have my surgerys there. I live in a small community and had to go to a university setting to get the right and fast treatment.

    Tell your daughter she is in our prayers and hope the next block works great for her and if not, we are here for you and your daughter.


    amber

    Ps how is the neurontin working???

     
    Old 03-25-2005, 04:09 PM   #13
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    Re: Question about Neuroutin

    It sounds like RSD to me. Currently, my RSD is in both my legs all the way from my feet to my hips and I am confined to a wheel chair. The RSD is also in a state of spreading in both my arms. But this is simply a state of trying to basically detox my RSD from my body to put it into remission. I don't know what city in Texas you are in, but the dr I am currently seeing is Dr. Rhodes in Corpus Christi. I would at least research him if I were you because all of his methods are non-invasive and he also does not use drug therapies. I truly believe in what he is doing with his STS therapy machine. He has been able to help everyone who has come to him with RSD, with an exception of 6. Those 6 gave up on him and his treatment, though. He never gives up on a patient. That's what I love about him is that he perserveres through each case and doesn't even care if you call his house at 3 am with a problem. He also himself has RSD and knows what it's like first hand.

    ~Amanda

     
    Old 03-26-2005, 03:21 PM   #14
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    Re: Question about Neuroutin

    Hi Everyone,
    Thanks for the prayers. So far the neurotin is working okay, I really don't know what it is supposed to do. My daughter says her thigh is just numb now, but her back still hurts. Is it supposed to make her thigh numb? So, we are just going day by day.

    Thanks again for the prayers,
    Yolanda

     
    Old 03-27-2005, 01:27 PM   #15
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    Wink Re: Question about Neuroutin

    Quote:
    Originally Posted by Ambrusky
    Yolanda,

    I live in Upstate NY nad my doc has runn out of options that he can think of to help me , so he called a BIG doc in TX that specializes in RSD and has done lots with it. His name is Dr. Gabor Racz in Lubbock TX. He is highly reconized and you can search his name on the net for more info, but he has been in on my care on my RSD for about a year now and hes awesome!!


    Amber

    Amber could you tell me if DR. Racz in quite elderly - because my doctor here went to a conference and came back with a paper by a doctor with this name and immediately put me on Clonmazepam. He said he was the experts expert as far as he was concerned and that he was still handling patients at 72. I will be check for more information on the web but just wonder if he was the same person. Laura.
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