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    Old 07-01-2005, 11:38 AM   #16
    sandollar
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    Re: Radicular Pain & Topamax?

    You must of missed this part of my post:

    [B]I've been on Neurontin before and cannot take it, it makes me really confused and I couldn't remember what I was doing most of the time. When driving, I would stop at green lights and run the red ones because I couldn't remember what to do, so I was taken off it before I killed myself.[/B]

    I have tried Neurontin, I am just one of those who cannot take it, it has nothing to do with my dosage, I WAS on a high dosage when I had to be taken off of it.
    But I do Thank You for your Concern & Information.
    StarDust

     
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    Old 07-01-2005, 11:46 AM   #17
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    Re: Radicular Pain & Topamax?

    Yes I understand that some people can't take Neurotin just as some people cannot tolerate Topamax. I don't take any Neurotin during the day only at night and oddly enough I find it takes 2 hours before the sleepy side effect kicks in. When I took a much lower dosage at regular intervals during the day I was sleepy and dizzy. The heavy dose only taken at night does help me when nothing else has been of any benefit. I hope you do find something that offers you some relief. By the way it isn't like I take my pills and go to bed and actually get a night's sleep. I constantly wake in pain and struggle to get back to sleep but even with that the pain is not as severe as it was it is a 7 before it was a 10.
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    Old 07-01-2005, 11:57 AM   #18
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    Re: Radicular Pain & Topamax?

    I would really LOVE some decent sleep right about now-Day or Night- I don't care which anymore. When I finally do get to sleep the pain gradually gets worse until I have to change possitions which is pretty often, and just turning causes the pain to hit a +10.
    Right now I have some kind of Viral Infection so my Family Doc told me I could not begin the Demerol until it passed, ugggg.
    The good news is, as of Tuesday the new PM in his office will do the EMG & Nerve Conduction Study and continue to be my New Pain Management Doc, so maybe things will finally get better.
    StarDust

     
    Old 07-02-2005, 12:33 AM   #19
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    Re: Radicular Pain & Topamax?

    Don't know who told you that if your nerve pain goes over 6 months it's permanent. My doctor said it can last 3 years and still clear up. Who told you that? A neurologist?

    I have a spine surgeon who did my surgery but he's no neurologist and it sounds like they have a different view of things. I wonder if it would be good to see one.

    I have heard nerves can take very long to heal. My doctor said that he has seen very bad cases wake up one day with no more pain, but that it can take 3 even 5 years. The only reason I'm still hanging in there is hope, otherwise I'd be dead by now unable to endure the pain and difficulty.

    I so wish people who have gotten better would revisit and post because all we hear from are others in pain so we don't know if anyone ever gets better and over this nerve pain. For all we know, there may be no end in sight to the pain. I'm one year post op and my nerve pain intensified at 7 months which doctor says is normal. wonderful.

    Frankly, if this pain continues the rest of my life, I'm outta here. Can't live with it.

    Does anyone know why our pain increases whenever we roll over in bed? Does anyone else have the problem of their back tightening and spasming so that you have to continually change sides and thrash all night? If not for that, I could sleep. It's after midnight and I'm waiting for a second pain pill to kick in so I can TRY to sleep.

    Neurontin helps a great deal, but level 10 stabs still break through. Been on the neurontin since March and am finally getting used to it. Still having difficulty thinking but it is better. I know what you mean about running red lights. I found myself walking head on into a moving car at first. I suspect the suicides they attribute to neurontin are actually caused by dulled brains and accidents.

    I can totally understand your need to find out if your nerve is still pinched. I worry about the same thing. My MRI came out clean showing no reherniation but that doesn't show everything. There is that fear that if it is pinched again that we will do permanent damage. I can't believe the fear this creates. We want to do the right thing, but how do we know? I catch myself asking, "is that the same pain as when the nerve was compressed by the disk? Or is it a bit different? what if it's pinched again and nothing is done and it's permanently damaged and I can't walk and have to live in level 10 pain the rest of my life?"

    My doctor says to give it time to heal and be patient and take the pain pills and exercise and wait it out. But I keep wondering if there is any more damage and find it hard to believe that a year after surgery it could ever get any better. Sorry, I'm totally depressed. This is just too much to take. THAT is the reality. And there seems to be no help whatsoever. No human should have to endure this kind of pain. I'd up my neurontin but can't function on any more. Catch 22.

    Keep us informed. Let us know what you do. Blessings.

    night.

     
    Old 07-02-2005, 04:21 AM   #20
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    Re: Radicular Pain & Topamax?

    Stardust, I have heard the same thing ladybird said about 3-5 yrs for nerves.
    I know it's not easy but keep looking for the answers and a dr that will help, I wish I had known better 6yrs ago when I first got injured because I truly believe my nerve damage wouldn't have ended up permanent if I had gotten proper treatment.
    Ladybird I wish I had some answers for you, I know I have to change sides all night and I can't roll over so I have to sit up in bed and change positions..
    My PM is suppose to start working on changing my meds around the end of next week, now I finally have my SCS removed.
    Linda

     
    Old 07-02-2005, 08:14 AM   #21
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    Re: Radicular Pain & Topamax?

    Ladybird,
    Please don't worry, I know how you feel, I am a hyper person and it causes me to be more and more depressed when things don't get better when I think they should. My Surgeon is an Orthopedic/Neurosurgeon.

    First of all, it was just a regular Family Doc who told me about the nerves, so don't worry about him. My Surgeon is ignoring my phone calls about ordering a EMG & Nerve Conduction Study which DOES show pinched nerves, inflammation or whether it is a muscle problem. SO I went to my Fam Doc and he ordered the tests through the new PM in his office. That is the only test that will tell all. and I wanna know ALL.

    I TOO have to actually sit up in bed using my arms and elbows just to turn and change possitions. I also have alot of nights I have to get up and wait for the Meds to kick in. Hubby wants a quarter for everytime I say OWWWW
    BUt this test is very important to me. I HAVE to know.

    I have heard the pain will increase before it gets better, that is a sign it is beginning to wake up, I hope that is true in your case as well. Mine however, is not doing that, it is staying the same.
    I think (my oppinion) that when we turn in the night, that we contract muscles that squeeze the nerves, etc. causing the pain to increase. Then it's a waiting game for it to calm back down again.

    I agree with you 100% about the accidents that can be caused from a dulled brain, not being suicides at all. I feel for the poor families who were told it was a suicide when we know what that med can do to our thinking (or not thinking).

    BUT... I am NOT going to be patient, I found another Doc to order the test (EMG & NVS) and it will tell me for sure, what is going on. IF it is not a nerve I will calm down and stop giving my Surgeon a headache, if I find out it IS a nerve, he is going to get a MIGRAINE!

    I am hoping for the best from this test, not hoping for the best without it.
    If this test shows everything, I will let you know and I would highly recommend it for you.
    Do a search on google, just type in EMG and everything will come up about this test and you will see what I mean and that there is hope.
    Stardust

     
    Old 07-02-2005, 08:50 AM   #22
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    Re: Radicular Pain & Topamax?

    OMG - LADYBIRD - you posted and said it better than I ever could have and said exactly what I 've been trying to verbalize (post) for weeks now. I'm waiting for wc to ok an mri to see if I have impingement as I did presurgery because of what I'm now experiencing with nerve symptoms and they seem worse to me than what I experienced before my surgery with my injury!

    I guess I hope it's the Catch 22 because of the obvious - I don't want it to be nerve impingement again nor do I want surgery again! I feel better just having read your post. Thank you. I felt I was going crazy. Maybe I am. Kind of sick that I feel better knowing I'm not alone. Sorry guys! I wouldn't wish this on anyone else and I'm not glad that you're experiencing it too just glad someone else was able to explain it to me.

     
    Old 07-02-2005, 09:16 AM   #23
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    Re: Radicular Pain & Topamax?

    I can't believe it took my drs so long to order a EMG for me and unfortuantly I wasn't educated enough about spine conditions to ask, my mri's just were not showing what the drs believed was enough to be causing all the symptoms and pain.
    I'll never forget the day my PM dr walked in after the EMg results came and said we have good news and bad.
    Good news is no your not crazy and the bad is damage is permenant..
    I hate it but after all these years just to hear a result was a relief and then knowing what I had to deal with.
    I fought WC for yrs and had 2 discgrams and a list a mile long of test and procedures of course I ended up setleing and now have the proof and like my dr says the EMG is one test that you can not fool...If only I had been wise enough to have had it done so long ago !!
    Linda

     
    Old 07-02-2005, 09:51 AM   #24
    BettyJ
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    Re: Radicular Pain & Topamax?

    Ladybird, the same thing happened with me...the doctor said it could take years....even after two years one should not give up on it...I once had a dr tell me that if my damaged femoral nerve did not come back after 18 mos., it would not, however, it did come back.....after about 3 1/2......so I am proof that nerves can heal even after some dr's think not.....

    as for nerve pain and sleep......I don't know why more doctors are not giving their patients ambien for that.....it is the ONLY med that I have ever taken since this ordeal began that has given me any relief of the pain.....it is a sleeping aid....one that you need to take and go to bed...no dawdling after taking it....I usually just take 1/2 to get the relief I need...comes in 5 and 10 mg...i recommend getting ten and breaking in half.....I know how you feel ladybird....it is not a good place to be and I am mad as h*** and don't want to take it anymore.....

     
    Old 07-03-2005, 09:35 AM   #25
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    Smile Re: Radicular Pain & Topamax?

    Jdlfmc (linda)

    I just had to comment. Although at this time I am beyond sleeping on my side for the last 22 years I have not been able to turn over from one side to the other. I have had to sit up and then turn. Even without my pain this really does a job on a good nights sleep as you must change positions during the night. It just struck me as funny that someone else has exactly the same problem. My fusion is 22 years old.
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    Old 07-03-2005, 09:56 AM   #26
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    Re: Radicular Pain & Topamax?

    pooby, Although I'm sad to hear others have the same problem, at least now I don't feel as if I am losing my mind. I felt really sorry for my husband until last year we splurged on a 12 in. memory foam mattress and now sitting up and turning over doesn't disturb him.
    Actually my 78lb. dog can jump right in the middle of it and it doesn't even disturb anyone.
    I can't remember the last time I had a nights sleep, everyone tells me to get sleeping pills from the dr, I can only say I'm afraid if I ever got them I wouldn't be able to give them up, I could get real use to sleeping at night and am afraid I would become addicted really. I'm not so much afraid of all the pain meds because I have no doubt I would give them up in a heartbeat if I wasn't in pain, though that won't be a issue I have to worry about.
    Linda

     
    Old 07-03-2005, 02:26 PM   #27
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    Re: Radicular Pain & Topamax?

    Hey Guy's
    I have been on Ambien for years and never liked the side effects. So I finally asked my Doc to prescribe the New LUNESTA, and I love it, it works great!
    I don't take it every night (which is why I am not sleeping). I am not sure if it will mix with the pain meds, (I forgot to ask to be sure).
    But I can tell you this.
    On the nights I took the Lunesta & tried NOT to take the pain meds, the only time I woke up-was in the morning, and I am still in shock!
    I am trying to take it 1 hour before my pain meds begin to wear off.
    Just a thought,
    StarDust

     
    Old 07-03-2005, 08:22 PM   #28
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    Re: Radicular Pain & Topamax?

    Betty, when you say your femoral nerve came back, did it come back all the way? Did you lose function as in leg went weak and then regained it? Did the pain then finally go away?

    The doctor says that he sees people with this nerve damage who one day wake up with no more pain, just fine. Overnight. Though he agrees there will probably be a little permanent damage. Hopefully only a little.

    I can say that my dad had radiation on cancer in his pelvis and lost 50% strength in his leg, then two months later, woke up with 50% of that back. Just like the doctor had hoped. Doctor said that was nerve damage due to radiation and the nerve would repair itself with time.

    I do get big increases in strength over night. At 6 months my leg went from 20% strength to 50% overnight literally. So i hope that gives someone hope.

    And precluding that, I had increased pain and sensitivity so bad you couldn't even lay an ice pack on my back or touch my leg lightly, and BAM, increased strength followed and that sensitivity subsided. And when it gets real sensitive again, BAM, I get another increase in feeling, as in the numbness lets up. I asked the doctor about that and he said it was normal. That's the way it happens. And he said yes, when you heal, often the pain gets worst, up to a 10.

    Blessings to you all. Happy 4th!!!!!

     
    Old 07-03-2005, 10:35 PM   #29
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    Re: Radicular Pain & Topamax?

    Isn't it starnge the way thoughts just drift through our minds, our maybe it's just me I'm not sure.
    Can't rest or sleep tonight the nerve pain is so bad I just lay with tears rolling and am miserable.So I was sitting here reading and even though I know my damage is forever, I can't help but wish.
    Anyway this is kind of off topic but not really as it does relate to nerves just not of the spine.
    Years ago I had damage to the left optical nerve from a hit to the back of the head, I was blind for a short time and when I did get any vision back it was double, the drs told me it could take up to a year for the nerve to heal.
    So a little over a year later I was scheduled for surgery to repair the nerve, when a few days befoer I was scheduled to go in I woke up and had perfect vision, goes to show that nerves can heal, to mention though had I had the surgery they would not have been able to correct my vision and the damage would have been irreversiable.
    So I guess there is hope for those with the nerve damage and I believe after reading all the post on this thread the drs just don't have all the answers and I think the nerves is one thing they really haven't figured out yest.
    Linda

     
    Old 07-03-2005, 10:48 PM   #30
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    Re: Radicular Pain & Topamax?

    Yes, I'm up too .
    Just wanted to wish everyone a wonderful and painfree 4th of July. At least as much as possible .
    I can't wait until Tuesday to hear from the New PM, seems time is dragging by. But as long as I know I am on the right track I'll behave myself and take it easy.
    I hope you are able to get some sleep soon Linda
    StarDust

     
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