Topomax

Discussion in 'General Health & Wellness' started by stick2013, Apr 12, 2013.

  1. stick2013

    stick2013 Member

    Ok, so I have suffered from migraines for over 40 years, and for the past 10 years I have taken 2 medications to help with them. Well, I have developed a new symptom now. Dizziness before every migraine, so my neuro finally said, NO MORE stalling on a preventative. Although I did try inderal, but could not take it.

    So the Topomax is causing major symptoms, even though it just the first few days. Just wondering if this will pass? Any advice?
  2. ameilie73

    ameilie73 Member

    Ive suffered migraine attacks and dizziness for many years im given stemetil for when i get them but no preventative meds. My aunt was put on amitriptlyine for preventing migraine. You might get a bigger response if you post on the fibro/cfs/me board

    Ameile
  3. TwoCatDoctors

    TwoCatDoctors New Member

    I'm in the chronic severe migraine category.

    The neurologist put me on Topamax at a low dose to start out then gradually got it higher. I did okay starting low dose and slow. Some people say they notice some confusion and that may pass or not. It may take a while to determine what your final symptoms may be, if any. A few days isn't very long.

    I also changed to generic Topamax, which is Topiramate, without any problem.

    My neurologist just upped my dosage to 100 mg. a day--50 at breakfast and 50 before bed. I get some tingling in the fingers, but not for long and it goes away.

    I'm also doing the botox for migraines every 3 months, which was going well until the neurologist went away for vacation and it put me back 3 weeks on getting the botox and I went into daily migraines and then I've had problems getting the botox to start in again. 3 weeks was too long for me to go without the botox and they keep it to strictly 90 days and no longer--but not this last time.

    Good luck with the Topamax and I hope it helps you out. For some it seems to make the migraines less in intensity. So if you still get migraines, note if it changes the intensity and let your doctor know. Many hugs.

  4. stick2013

    stick2013 Member

    My issue is the fact that my neuro wanted me on 100 mgs by the weekend. I am having every side effect there is, and then some. I feel like crap. Dizziness and feeling like I'm high on some kind of a drug is the worst of it I guess. I can deal with the rest of the side effects, as they aren't as bad.

    The tingling in my hands, feet, face lips is annoying, sometimes more than annoying, but I can cope with it.

    Migraines can be so fun.... NOT!!!! Well, I guess there are a lot of other things in life that are a lot worse.
  5. TwoCatDoctors

    TwoCatDoctors New Member

    Below go to Chart Number 3, which is the recommended way to get to the top dosage you need, and it appears your doctor has you going way too fast. You can do it your own way and be safe and I would. My neurologist did it very slow and was concerned and said it must be done very slowly.

    http://www.rxlist.com/topamax-drug/indications-dosage.htm

    Even the manufacturer of the drug states "start low and go slow"

    http://www.topamax.com/how-topamax-may-help--dosage-drug-interaction.html
  6. stick2013

    stick2013 Member

    Yeah, by Monday morning after I took my 2 pills, I was praying for death. I was double visioned, dizzy beyond dizzy, my entire body was numb and I couldn't even, feel parts of my body.

    That was the good part. I haven eaten anything other than toast some candy, and some nuts since Sat. I felt like I was going to vomit, couldn't sleep for more than a few minutes at a time. Felt really high, and my head felt really funny.

    I called my neuro. He said there was some misunderstanding about the medication. IDONT THINK SO, when even the bottle says to take 2 in the am and 2 in the pm.... So he wants me to go down to 25 mgs for 2-3 days, then up to 50 for 2-3 days then 75- then 100..... I haven't had ANY since Monday, and after what I went through, I am not sure I will take any again.

    Just not sure what to do here. I know I am sick of the migraines, but am I sick enough to put myself through that again???? Not sure..... Thanks for the help...
  7. jaminhealth

    jaminhealth Well-Known Member

    but remember as a little girl, an aunt was in bed a lot in a dark room in mid day due to her migraines....

    I just googled Natural Remedies for Migraine Headaches and got a lot of hits....right on top of the page was Acupuncture...I've had success with acupuncture for my back spinal stenosis issues...I have friends with great success with acupuncture too, for their issues.

    I had a history of sinus headaches before grape seed extract....haven't had a headache in moons....did you get on the grape seed yet? jam


    PS: Those side effects just sound horrific....I would work at everything possible more alternative....[This Message was Edited on 04/17/2013]
  8. stick2013

    stick2013 Member

    Still thinking about it. After what I have gone through and after reading several websites about Topamax, it's side effect, the lasting debilitating and life changing side effects it causes, I am afraid to take anything.

    It's been 3 days since I have had any of that crap, and I only took it for 5 days, and I am STILL having some residual side effects. Some people 2 yrs later are still suffering... That drug should be take off the market. I can't believe that the FDA can allow such crap.... But then again, it's all about the almighty $$$$$

    Makes me sick....
  9. jaminhealth

    jaminhealth Well-Known Member

    look at all the damage from those fluoride laced abx and they are still pushed on the unknowing.....and how big pharma works their bloody best to rid our supps....I like to use the word criminals in so much of the drug world. Yes, follow the $$$$$$

    I don't think I've seen damage from grape seed,but your call.

    To my thinking at this late date, alternatives SHOULD BE the first lines of attack and if they fail, do the drugs...our system is upside down, in my mind. Feel better....jam
  10. TwoCatDoctors

    TwoCatDoctors New Member

    I wish I had gotten back on here earlier. You shouldn't have stopped abruptly and that would make you feel just as bad. You have to come off it just as slowly as you are supposed to go on it.

    The results you had initially are because you went on overload from too high a dose to start. I didn't go that fast and I didn't up the dose in 3 days. He gave me a week or 10 days and that was to allow me to get used to the dose. Your doctor is not really familiar with the med, otherwise he wouldn't have made the dosing mistake and then when you told him about it, he told you to go to 25 and then up it in 3 days. That's way too soon.

    Let me tell you some of my secrets for trying to reduce or rid the migraines and see if any of them will work for you:

    My first and best secret: What I will tell you is that I have gel packs that I keep in the freezer and they have a light cotton cover. they used to sell them at Target but no longer do. I put one at the back of head at the occipital area and then put another where the beating is on my head and I lay down in a quiet place. Stick, it should stop some of the beating. then as the gel packs lose their cool, I replace them with more frozen gel packs. If you find a place that has them, get about 8 of them because you will use them often. The neurologist said that what I do is called "the poor man's occipital neural block." The gel pack does a sort of really cold to the occipital area and induces a sort of "block" and that's the area where the neurologist would normally actually inject to do the occipital neural block (and I've had those). So this is a way of doing a short term block without needles and using real cold--but you must use those cotton covers on the gel pack.

    My other secret is that I have the Shower Massage head in my shower and I dial it to extreme pulsating and then I let it really hit hard on my head, neck and shoulders. I don't get in the shower to get showered, I get in just for the pulsating on my head. Get the pulsating onto the beating part of your head, then figure about the top of your ears but about two inches back--that's the occipital area where many migraines are involved and it can give you sore areas there. Hit the pulsating shower head there for a while. That shower head really hits hard and makes my head, back from my ears, my neck and my showers more relaxed and I feel better.

    My next little secret is that I will get in my car and go up the street for a plain hamburger (not a cheeseburger) and a diet coke or diet dr. pepper. For some reason, the protein in the burger and the caffeine in the fountain soda (can't be in a bottle or a can) will sometimes lower the level of the migraine. I don't understand it and I just appreciate it when it happens.

    Sometimes if you get a hat that is tight and put it on around the beating part of your head, it can feel much better. A migraine is from the veins constricting and then suddenly expanding so much. So the tight hat helps settle the veins down.

    Stick, I'm so sorry you are going through this. I have had this since 1990 and they can't find a reason for it. I went to so many migraine specialists in many states and no one could find a cure. they tried herbs and vitamin therapy and they tried 5 red pills as soon as the migraine came on and I would vomit up the pills. It was insane. Try whatever you can to see if it will lower the level of the migraine.
  11. stick2013

    stick2013 Member

    I agree that my Dr didn't start me out correctly on the Topamax, but after reading forum after forum about people and the horror stories about Topamax, I would never try it again.

    People that only tried it for a few short days, weeks, months, and got OFF of the drug, that are still yrs later having adverse reactions to it. People that have memory loss, hair falling out, tingling hands, feet, limbs, eye sight issues. Ect ect.

    No, Topamax is not a very nice drug, and the side effects can be debilitating, and life long. I want no part of that. Today is the first day that I feel 95% better, and I finally got some sleep last night for the first time in a week,

    I wish you all the best with it, but caution you also to rethink it......

  12. DebbieN

    DebbieN Member

    I suffered with migraines for years. My neuro put me on topamax,but did increase it very slowly. I have Zomig to take for breakthrough migraines. It took a while but the headaches are a rare occurance now. It is not a med to stop suddenly