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    topamax

    i did a search but only found stuff from 2006.

    the latest thing i'm trying is topamax.

    chelle, you still on it? any others?

    #2
    yep, I'm still on it, still working great...taking 100mg 2x/day on the occasional bad day I'll take an additional 50 or 100mg. any ?'s just ask...
    'Chelle
    L-1 inc 11/24/03

    "My Give-a-Damn's Busted"......

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      #3
      how bout your appetite? i gotta watch that as i have lost weight like crazy due to undiagnosed abdominal pain last 3 yrs. never weighed much anyway.

      am starting only on 25mg topamax.

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        #4
        Originally posted by cass
        how bout your appetite? i gotta watch that as i have lost weight like crazy due to undiagnosed abdominal pain last 3 yrs. never weighed much anyway.

        am starting only on 25mg topamax.
        I take 50 Mg twice a day, and I have not notice anything with my appetite.My Dr did tell me that I, would not have much of a appetite, but it has never happened in the 3 years that I have been on it.
        Tough Times Don't Last...Tough People Do!

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          #5
          I take it as well. no effect on my appetite - no weight loss or gain. the only problem I have is that I can't sleep as well since I started it. I use to sleep through the night and now I wake every couple hours and sometimes have trouble going back to sleep. also, some things taste funny - like diet coke and licorice are the main 2 things that taste competely wrong.
          overall though it is the best thing I have tried for my nerve pain.
          C3/4 Brown Sequard

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            #6
            Topamax - No help here

            Hi Cass,
            I just signed up on this site today and saw a post you had last year asking what do you do when the pain is unbearable? Before I get on that I also wanted to say I was on topamax for over a year, and it simply did absolutely nothing for me but everyone is different and I pray you find relief.

            I am a 46 year old Pharmaceutical Executive (I know, let the jokes fly ) with severe pain radiating from my cervical and lumbar region. I had C-4, 5 & 6 spinal fusion surgery in 2002. The pain, which had been radiating to the left side of my back and down my arm, lessened significantly but returned in 2004 to baseline. MRI & Mylegram reveals bulging & herniated discs above and below the fused area. I began experiencing pain in my lower right back, hip and thigh last Sept. MRI shows bulging, herniated and a TORN disc in L-4, 5 & 6. The pain is absolutely unbearable, and some days I too pray for death. I have a wonderful wife and 5 incredible kids and I could never do that to them, so what do I do? I just bear it and pray to God to please take it away. Recently I was taking Oxycontin ER 80 mg bid and have 10 mg Percocet for break-through pain. I also take Cymbalta for depression and it also possesses nerve pain reduction qualities. I have also had 2 spinal injections in the past 4 weeks. This regimen was not working, so I asked my PCP last Friday 3/28 to switch me from Oxy to Opana. Endo's website has a coversion chart indicating that Opana is roughly 2x as potent as Oxy so I went on 40 mg Opana bid. All it has done is make me sleepy , given rise to thunderous headaches , and as for pain relief, I feel like I am taking placebo. First I do not believe the conversion chart is correct, and second, I plan to call my doctor in a day or two (I will give Opana a fair 5 day trial) to get switched back to Oxycontin.

            Unfortunately, chronic severe pain is a way of life and what irritates me the most is the overly conservative approach MD's take when treating. Also, there are numerous "illegal" drugs that can help us and increase our quality of life but do we run the risk of being arrested? Not for seeking the "ultimate buzz" or getting high, but simply to live a relatively normal life. I have worked in the pharmaceutical, biotechnology and clinical research industries for 22 years and I can honestly report from the front lines that our healthcare and clinical R&D systems in this country are the most corrupt, inept and completely convoluted of any known to mankind.

            Hang in there, my dear, and may our Lord and Savior, Jesus Christ free you from the shackles of this terrible pain in your body.
            Michael

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              #7
              michael, it always saddens me to hear of another suffering from pain. so far, in my life, pain is the biggest disabler of them all. it robs one of practically everything. i am afraid of the pain getting worse (as it is).

              practically nobody, except those in pain, want to talk or hear about it (so i don't much). it's a hard thing to understand. i'm constantly being asked "you're in pain? you don't act like it" on the few times the subject has come up with ab friends. well, what is acting like it? screaming all day for 22 yrs?

              and, of course, now on medical loa, my short term disability wants all kinds of proof. how does one prove pain? it can be extremely disheartening.

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                #8
                My doc prescribed the topo this month. We were on catastrophic-only health insurance for one month, this one, due to having to switch ins. companies blahblah. I asked my Dr. if the Topo was expensive, was told no. Imagine my surprise to be told at the pharmacy, a month's worth was $400! I told them to keep it, I'd try it next month.

                I hope it helps you Cass. This pain is a terrible thing.
                Blog:
                Does This Wheelchair Make My Ass Look Fat?

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                  #9
                  oh geez, beth...i'm on samples...dunno if my ins. covers it. so far, no relief anyway. but, ya know, short term dis ins can't even decide if i'm truly dis or fakin it anyway so..... f em. sorta....i've pretty much decided i can't do it any more. NOW they want me to talk to voc rehab HA. 2 degrees, 27 yrs working as an engineer, 21 as a quad in pain....ummmmmm, i don't think so.
                  Last edited by cass; 5 Apr 2008, 2:32 AM.

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                    #10
                    I'm on topomax, I take 3 at night before bed so I can sleep (even though I'm supposed to take them seperately... I can't be bothered. lol) I have a loss of appetite, but no real fluctuation in weight from the medication itself (I'm still trying to shed my neurontin pounds) It doesn't work that great but nothing does. I find it has the least side effects of any of the other medications for nerve pain, and it's the only med I take other than 1 bladder regulating med.

                    I just deal with the nerve pain the rest of the time. The side effects were so bad with everything that I finally just quit them all (slowly/according to Dr.s orders) I'll take a hit of herb now and then when it gets too rough, but that's it.
                    An administrator made me remove my signature.

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                      #11
                      Originally posted by cass
                      oh geez, beth...i'm on samples...dunno if my ins. covers it. so far, no relief anyway. but, ya know, short term dis ins can't even decide if i'm truly dis or fakin it anyway so..... f em. sorta....i've pretty much decided i can't do it any more. NOW they want me to talk to voc rehab HA. 2 degrees, 27 yrs working as an engineer, 21 as a quad in pain....ummmmmm, i don't think so.
                      Dont get me started on Voc Rehab I guess in NC the only jobs they can find for someone is telemarketing so I finally gave up on them!!! I have better luck on my own.....

                      Anyway....you have been at it a long time. Maybe you need to take some time off and take care of yourself. Every few years I develop some problem that I just cant take care of and work too. I am amazed you have worked a straight 21 years disabled and raised a kid too.

                      Working is a lifesaver for me as I go stir crazy when I am at home.

                      Its okay to step back and take care of yourself. I wish you health and happiness. VR is a waste of time!!!!

                      My short term disability wouldnt even accept my claim in 2005....yep I paid my premiums....so I just went straight back to SSDI.
                      T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                      My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                        #12
                        Topomax

                        Hello, I am new here but. I have been on Topomax since about December I think. I had tried Neurontin and Lyrica and could not stand the side effects and read about topomax at another forum and asked for it.

                        I started out slow and the doctor increased it. I take three 50 mg tabs at bed this is how its prescribed and it makes me tired so it helps me sleep as well. It has helped me tons with neuropathic nerve pain. I have no nerves impinged. It helped alot at first, it knocks out alot of the burning part I had. The nerve pain is still there but greatly diminished. I also take cymbalta but have been on that for a year longer. The pm says they can only increase the topomax by 50 more mg's so they are holding off for as long as possible.

                        I do like it, it doestn' have the brain fog, I am on five meds so the combo or one of them effects my memory long and short but much better than neurontin and lyrica by far.

                        I didnt loose any weight till the last month or two. I then lost ten lbs or just gradually lost it. This is all the weight I had to loose I am now back to my normal prepregnancy weight or weight I should be when I had to quit working, however I have no muscle which sucks...

                        I love it and would recommend it. It also is used as a mood stabilizer for bipolar disorders and for migraines so it has other qualities to and I really do think it had a calming effect for me, and ya know I have been through a very stressful time.

                        I am one year post op spinal fusion and well basically it didnt' help.

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                          #13
                          PS there are programs out there for help with meds for people who need them. I can find the link if you guys need me to.

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                            #14
                            Doc wants me to try Topamax again. Start at 25 mg. What dose is supposed to be effective? I already have no appetite due to abdominal pain, so I can't lose it.
                            Alan

                            Proofread carefully to see if you any words out.

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                              #15
                              Its gradual

                              It kinda has to build up. I felt no immediate effect where others told me different. I think it was about a week I noticed a difference, then I think at two weeks he increased the dosage to two pills. Then I got alot more relief or it might of been that's when I started really noticing a difference. But when he then went to the third pill, is when I got the most help. The plan was the full dosage of three pills but you can't start on three, you have to follow a certain order of starting and adding gradually.

                              I would definitly give it a shot, For me it has had the least side effects, and really if you have to choose between loosing weight and gaining weight as a side effect health wise loosing has to be better.Alot of people have gained due to inactiving and being on these others.

                              When I was on lyrica I had such severe swelling in my hands and feet I could not handle it, I gained weight very rapid, and I am not a person who tends to gain weight.

                              But it has helped alot, not eliminated it, but made a huge difference. The pm doctor told me the other day I can only go up one more dose so...we'll see

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