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    Old 12-03-2007, 08:15 AM   #1
    awsam007
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    Topamax question

    Anyone taking topamax for sciatic nerve pain related to spinal disc problems? If so, are you getting any pain relief from it? What are your likes and/or dislikes about topamax if you've previously taken it or are currently taking it? I would appreciate any advice and opinions. Thanks!

     
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    Old 12-27-2007, 09:59 PM   #2
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    Re: Topamax question

    Hi There ,
    I was just going to post the same one as you did. I have the same problem and this is my third try on Topamax. The last 2 times the tingling in my feet and legs turned to severe pain and I couldn't walk or put my feet on the floor it hurt so bad. among other problems, However I agreed to try it one more time because I was told it would help me with my back and knee's I have DDD & DJD, had 2 Spinal Fusions at the S1 & L5 both failed, Sciatic Nerve pinched after second surgery, now the skin on my left leg burns like someone is holding a blowtorch to it, I can't sleep due to the pain. I am also taking OxyCodone 10/325, Fentanyl Patch 50, Topamax 100 in the morning and 100 in the evening, and my regular meds and it doesn't touch it. Everyday I wake up and wonder why am I taking Narcotics that don't work?
    I am due to return to work on Jan 8th. But everyday I have to ask myself, HOW? I can't even walk straight or bend down enough to clean my house, I have to use one of those grabber things.
    The good part is I've lost my appetite, the bad part is things taste horrible and I hate the trembling I feel inside.
    Does all this ever stop?? I've been on Topamax for 3 months now, How long have you been on it, and has it helped you any???
    Stardust

     
    Old 12-27-2007, 10:25 PM   #3
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    Re: Topamax question

    Stardust, have you been at the same dosage this entire time?? You might post on the back board. There are several people on that board that take it and it did take awhile to work.

    Good luck.

     
    Old 12-27-2007, 10:57 PM   #4
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    Re: Topamax question

    No, this is my 3rd try at it, I've just gotten up to this dosage about 3 or 4 weeks ago. I don't think it really works for Nerve Pain. I think I would rather ask for the Steriod injections and they HURT! I haven't had those in several years.
    Stardust

     
    Old 12-28-2007, 02:13 PM   #5
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    Re: Topamax question

    Stardust:
    Why are you not on Lyrica or Neurontin. I am sure you have tried them before but were they at a high enough dosage to be of benefit. Let us know.

    Brian

     
    Old 12-28-2007, 05:25 PM   #6
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    Re: Topamax question

    Hi Stardust.

    I'm sorry you are experiencing so much pain. Have you discussed the possibility of increasing your pain meds with your dr? In the past, your ESI's have been painful? Let me give you a piece of advice, if your dr properly numbs you, the injection should NOT be painful. Everytime my previous PM dr did my ESI's it felt like torture but today my new PM dr did my 1st injection and I didn't feel anything, it was WONDERFUL, really it was (yes, I'm sore, but that's to be expected from the actual needle stick)!

    I also have DDD and have had one failed fusion (L5-S1). I'm now under the care of a PM dr, who is just trying to control my pain.

    I've been on Topamax since 11.02.07. I started out taking 25 mg's each night at bedtime and each week my PM dr increased my dose until I reached 100 mg's a day. At first I didn't like the side effects. I felt tired, dopey and moody. The only WONDERFUL side effect was loss of appetite, which I still LOVE. It took about 6 weeks of being on 100 mg's for my body to get use to Topamax. I really like it now. For the first time in 2 years I sometimes have "good" feeling in my left leg and foot (for 2 years I've had NO feeling in my left leg and foot, they've been numb). I took both Lyrica and Neurontin for months and never received any benefits like I'm seeing on the Topamax.

    Talk to your doctor about your pain. Please keep us updated. I hope your pain gets better. Hang in there . I will keep you in my prayers.

     
    Old 12-28-2007, 06:42 PM   #7
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    Re: Topamax question

    Hi,
    Yes, I did discuss increasing my meds but my PM says he doesn't want me on a higher dose. He tried me on Lyrica and I had a really severe reaction to it and the Neurontin as well, I Hyperventilated and I can't remember how to get home or where I was going or how to take my meds or if a red light means stop or go, so I was running red lights and stopping at green ones. Then I couldn't remember which was the brake or the gas. I was a total mess. And there is nothing else they can give me.
    Last week is the first time PM actually budged and changed my Lortabs for Oxycodone. And it has made a big difference, but not enough.
    My hopes are now on the Topamax.
    The ESI's I had,(not this guy-he doesn't do them=too old) I had my face burried in the pillow screaming, there was no local, I could feel the needle going to the spine into the tailbone, the medicine going in, everything, I spent 3-5 days on my couch very weak(which hubby had to actually PUT me on, because I could barely move on my own, I couldn't even move up to the pillow it was so bad.. Is there an injection that they can do to deaden the nerve causing the Sciatic Nerve problem or the Burning skin problem? They say no, But there has to be ONE injection that might work. I have been off work 6 months, and I see the Surgeon one last time on the 8th and I really want to go back to work with his apporoval, but I have to take care of this first.
    3 months ago a double knee surgery has put me out of a job, and for some reason it aggravated the Sciatic Nerve.
    PM already has me on (Name brand) Duragesic 50, Oxycodone 10/325, I have my regular meds and then he also gave me Phenergan 50 for itching and nausea. Plus the Topamax 100 in the morning and 100 at night.
    PM said if he gives me anything higher i would be TOO sedated. YA RIGHT!!
    Stardust

     
    Old 12-28-2007, 09:16 PM   #8
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    Re: Topamax question

    Last week is the first time PM actually budged and changed my Lortabs for Oxycodone. And it has made a big difference, but not enough.

    Did your PM originally put you on lortab for b/t pain? He then switched you from lortab to percocet? How many percocet did your PM prescribe for you a day?

    My hopes are now on the Topamax.

    I would recommend sticking with the Topamax for atleast a few more weeks before you give it up. I had a difficult time with it at first too and I wanted so badly to stop taking it but I'm glad I stuck with it. I don't know how you function though, taking 100 mg's in the morning too. It knocks me out when I take it at bedtime.

    The ESI's I had,(not this guy-he doesn't do them=too old) I had my face burried in the pillow screaming, there was no local, I could feel the needle going to the spine into the tailbone, the medicine going in, everything, I spent 3-5 days on my couch very weak(which hubby had to actually PUT me on, because I could barely move on my own, I couldn't even move up to the pillow it was so bad..

    Are you joking????!!! Talk about cruel and unusual punishment. Why did you let this joker that called himself a dr continue to torture you, Stardust? You could have sued this dr. I thought I had heard it all....heck, I thought I've had some terrible dr's but none tops your experience. Was this the first ESI you had ever had? Have you had any injections since? If not, I can't say I necessarily blame you but you may want to consider it. Doctors say ESI's provide pain relief most often in patients that have back pain and leg pain caused by sciatica. I haven't found much relief from them but I don't have sciatic nerve pain, my leg and foot are just numb b/c my nerve is pinched. Look into it. If your current PM doesn't do injections, ask him to send you to someone that does. Before having any ESI's, sit down with the dr doing the injections and explain your previous experience, explain your fears and make sure he or she will numb your back before beginning the actual injection. Also, most doctors will give you medicine to calm your nerves (like valium) if you're nervous before or during the procedure (as I imagine you would be). Having ESI's and taking the topamax might be the right combination your body needs to calm down your sciatic nerve.

    PM already has me on (Name brand) Duragesic 50, Oxycodone 10/325, I have my regular meds and then he also gave me Phenergan 50 for itching and nausea. Plus the Topamax 100 in the morning and 100 at night.
    PM said if he gives me anything higher i would be TOO sedated. YA RIGHT!!Stardust[/COLOR][/QUOTE]


    Is Duragesic 50 a pain patch? Your PM is correct when he says if he gives you anything higher you would be too sedated but he needs to focus on your pain. For example, he may be able to reduce your phenergan dose to 25 mg's instead of 50. There are so many different pain meds on the market today and I think for your PM to say he "can't" is a copout. YES, he can, NO, he doesn't want to. Have you ever taken an extended-release pain med, like oxycontin? I like oxy b/c it works longer than the typical 4-6 hours that most pain meds work and it works better than most pain meds. I take oxy 20 mg's twice a day and percocet (10/325) for b/t pain.

    At your next appt share your concerns with your dr, let him know your pain is out of control and that you would like him to explain other pain med options. When is your next appt with your PM?

    Unfortunately, it may be time to start looking for a new PM, especially if your current PM refuses to adjust your meds or try any new ones. I hope your PM is receptive at your next visit so you don't have the added stress of possibly searching for a new one.

    Please keep me updated. I would appreciate it. I will keep you in my prayers. I hope your pain gets better everyday. Stay strong .

     
    Old 12-28-2007, 09:34 PM   #9
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    Re: Topamax question

    Nicely stated, Scrappin...I am fairly new to this board (member since December 2007) and was wondering what "b/t" stands for...Thanks in advance.

     
    Old 12-28-2007, 10:00 PM   #10
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    Re: Topamax question

    Thank you...I also unfortunately live with chronic pain. Like all of us here, my pain is constant! I go for my first appointment with a neurosurgeon on January 22nd and will be sure to let everyone know what I find out...I pray that it will go well!

     
    Old 12-29-2007, 12:20 AM   #11
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    Re: Topamax question

    HI,
    At first he wouldn't give me a Breakthrough med, but I kept saying I didn't want to go up on the patch because they are to hard to come off of, but I am LOSING MY JOB!!!!!, He got the hint and finally after several months gave me Lortab 10/500 twice a day. But it didn't help at all, I had to take 2 at one time just to know it was working, so I didn't take any and then took both at bedtiime.
    I fussed enough that the last visit he changed it to Oxycodone 10/325 twice a day, but he again said NO MORE THAN TWICE A DAY or I would be too sedated! NOT (I also have Panic attacks, I am being treated for and he knows the other Doctor) I think because of my 4mg of Xanax a day he is afraid to give me anything stronger. But after 14+ years on Xanax I am used to it.
    Yes, I'm going to stick with the Topamax. If nothing else it might be a good weight loss drug.
    When I had my ESI, I also had other injections at the same time, I had an IV, and it was done in the outpatient surgery of the Hospital ,but nobody ever put anything in it, it got so unbearable I begged the Nurse, but by then she said it was too late and it was almost over., So I had an IV for NOTHING!

    They kept telling me to wait and wait, so I did, but the pain was so unbearable I can't believe they didn't give me anything, they told me they would. Another thing is they thought it was funny and was laughing, they said it should not hurt after it was over with. WANNA BET!
    Needless to say, I fired her. I had 8 bandages on back there and 3 in my crack with gauze that wouldn't stop bleeding where she did the injections.
    And NO, I've never had them done again. That was 3 or 4 years ago, before my 2 Spinal fusions. I now have a pinched nerve causing all the problems.

    So 3 months ago when I had to have double knee Surgery my Sciatica started up really bad on my left leg mostly. I'm not sure why.

    Valuim won't effect me at all, because of my Xanax being so high.
    But she could of at least used a local!!!

    Duragesic 50 is a Fentanyl patch, but it is the name brand.
    I only take the phenergan once in a long while for itching or nausea from th patch or something. so he doesn't need to cut that down. I keep telling him I REALLY need my breakthough 3 times a day, but he keeps saying NO.
    With the patch and Breakthough meds, Topamax and my regular meds he thinks it would be too much.
    I have only been on a long acting Pain Med after surgery and it never lasted long enough, I had to sit and just watch the clock.
    My next appt is not until Jan 16th, but I need to get in earlier and ask him about the ESI so I can get rid of this and get back to work (I need the money) just like we all do.
    I thought about the ESI again because I can't stand even having this Laptop on my lap for very long, my legs get hot, then cramp up, then the pain of the nerve goes down the back to the feet, and it's really hard to try and stand and walk a minute and then get back on here, So I know I CANNOT work until this is fixed.
    I am going to try and call him Wednesday after all the Holidays are done and get in to explain that I need some kind of injections. With my luck he will want to put me on Steriods, but I can't take them by mouth, I have problems with them as well.
    I'll let you know when I find him, He has 3 offices, but is close to 70 and is probably going to retire soon.
    Stardust

     
    Old 12-30-2007, 01:15 PM   #12
    scrappinmaniac
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    Re: Topamax question

    Hello Stardust. I hope you are having a relatively pain-free day .


    I fussed enough that the last visit he changed it to Oxycodone 10/325 twice a day, but he again said NO MORE THAN TWICE A DAY or I would be too sedated! NOT (I also have Panic attacks, I am being treated for and he knows the other Doctor) I think because of my 4mg of Xanax a day he is afraid to give me anything stronger. But after 14+ years on Xanax I am used to it.

    All chronic pain people and all pain mgmt dr's know that after taking the same meds for so long your body no longer "reacts" the same way it initially did in the beginning to them. Meds that would "knock out a horse", so to speak, probably would keep most of us chronic painer's up all night. That's just how it is. It sounds like your PM is simply too old. Elderly people don't believe in taking medicine, do you know what I mean? They grew up toughing it out. I really think you should begin looking for a younger PM dr that believes his or her job is to control your pain.


    Yes, I'm going to stick with the Topamax. If nothing else it might be a good weight loss drug.

    Good. I'm glad to hear that. I think it's a good weight loss drug. Since I started taking Topamax on 11.02.07 I've lost 20 lbs without effort. I haven't changed what kind of foods I eat and being disabled I don't get much exercise in, the topamax just kills my appetite and while I know losing weight won't fix my back problems, it certainly can't hurt them either. There are many days that I have to remind myself to eat something. It could be the topamax or the fact that I have a 22 month old to chase after all day...lol...whatever it is, something is working.

    When I had my ESI, I also had other injections at the same time, I had an IV, and it was done in the outpatient surgery of the Hospital ,but nobody ever put anything in it, it got so unbearable I begged the Nurse, but by then she said it was too late and it was almost over., So I had an IV for NOTHING! They kept telling me to wait and wait, so I did, but the pain was so unbearable I can't believe they didn't give me anything, they told me they would. Another thing is they thought it was funny and was laughing, they said it should not hurt after it was over with. WANNA BET!
    Needless to say, I fired her. I had 8 bandages on back there and 3 in my crack with gauze that wouldn't stop bleeding where she did the injections.
    And NO, I've never had them done again. That was 3 or 4 years ago, before my 2 Spinal fusions. I now have a pinched nerve causing all the problems.

    So 3 months ago when I had to have double knee Surgery my Sciatica started up really bad on my left leg mostly. I'm not sure why.

    I thought about the ESI again because I can't stand even having this Laptop on my lap for very long, my legs get hot, then cramp up, then the pain of the nerve goes down the back to the feet, and it's really hard to try and stand and walk a minute and then get back on here, So I know I CANNOT work until this is fixed.


    I would be really interested to see if ESI's would help calm your sciatic nerve pain. I'm guessing they would. I hope you can convince your dr to send you to a good dr that can give you the injections. I certainly understand you concern about getting back to work because you need the money. My bank account has been bare since day 1 of this terrible journey. I get through each day only with God's help. I don't know what I would do without my relationship with Him. Good Luck to you Star and yes, please keep me updated. Happy new year!

     
    Old 01-03-2008, 07:31 AM   #13
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    Re: Topamax question

    Quote:
    Originally Posted by awsam007 View Post
    Anyone taking topamax for sciatic nerve pain related to spinal disc problems? If so, are you getting any pain relief from it? What are your likes and/or dislikes about topamax if you've previously taken it or are currently taking it? I would appreciate any advice and opinions. Thanks!

    Hi,
    I was on Topamax for epilepsy. It made me brain dead, gave me the tingles, anxiety, depression, eye problems. Icould go on.

     
    Old 01-03-2008, 10:57 AM   #14
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    Re: Topamax question

    I am on Topamax for Epilepsy, and I am having great success. No seizures, no migranes, and I have lost a TON of weight with no effort, and not changing my diet. I have not had any breakthrough seizures, and it has not interfered with any depression meds I have been on either. I have no complaints.

    Having said that, not every med works for everyone, so just because it worked well for me, doesn't mean it works for you. I know people who Topamax did not work for. If your meds are not working, you need to see your dr and have them try something else until you find something that works for you.

    Good luck!
    __________________
    Rebecca

     
    Old 01-03-2008, 11:29 AM   #15
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    Re: Topamax question

    Quote:
    Originally Posted by TopamaxKillsMe View Post
    Hi,
    I was on Topamax for epilepsy. It made me brain dead, gave me the tingles, anxiety, depression, eye problems. Icould go on.
    Hi TopamaxKillsMe,

    I'm sorry to hear you had such terrible side effects from topamax. Can I assume you no longer take it? The only side effects I've had from it is feeling brain dead and weight loss. I've read it affects your frontal lobe so I guess that explains the brain dead feeling, but I have found the longer I'm on topamax the better my brain works. The weight loss side effect is very welcomed. I have back problems, and while I know nothing will cure my pain, every little bit helps, even if it is a few pounds . What do you now take for your epilepsy? Have the side effects from topamax been long-lasting?

    Take care.

    I sincerely wish you the best,
    Scrappin'

     
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