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Nobody on Topamax?

happyHBmomhhappyHBmom Posts: 2,070
edited 06/11/2012 - 8:43 AM in Pain Medications
I'm just wondering what everyone's experience with it is :)


  • Not sure what you are wanting to take it for. It apparently has a couple of uses?

    My youngest daughter has had migraines all her life. We never got it resolved. She is an adult and still has them. She has them more under control now. I think she has tried about everything they make.

    She said they tried Topamax as a preventative medicine. She thought it helped some but the side effects outweighed its value. Side effects for her were; made tongue numb, made food taste strange and made jaw hurt periodically.

    Not sure if this is what you are looking for.

  • I tried Topomax last week as suggested by a pain mgt doc, since I'm having severe pain, burning, numbness down my leg. Evidently, it is being used now for these symptoms.

    I took a total of 4 pills over 4 days, and I experienced the same symptoms as Graham's daughter. Plus, I had ringing in the ears, and I had some difficulty thinking, memory issues.

    For me, it was worth a shot trying Topamax. Of course, I'm looking for a miracle drug for my pain.
    But, did not like the side effects either. The side effects obviously happen pretty quickly, so you would know fairly soon if you could tolerate the drug or not.

    Good luck,
  • I am changing from Lyrica to Topamax for nerve pain. So far, I am having the thinking/memory issues, but not as severe as on the lyrica. I am also having the odd taste.

    Sleeprgirl, the side effects generally abate over time, it's a shame you didn't stick it out and see if it might be your miracle drug :(

    I was looking for some people who completed the ramp-up cycle (I started out at 25 mg/day, now at 50 mg/day, I believe I will be ramping up to 200 mg/day) to find out which side effects abate and when, and at what point pain relief started.

    Lyrica worked so, so well for my pain. I finally had to go off due to weight gain.

  • Thanks for the input...I have a friend on Topamax for seizures...I will test her about the side effects...

    Get back with you when I find out something!

  • I'm experiencing some deja vue? Did we have this conversation before? I really can't remember. Could be the side effects of the Topomax.

    I originally started taking it for Migraines. I am extremely sensitive to most drugs. It took me FOREVER to get up to the nightly dose I am on which is considered very low. I have to take mine at night. It causes extreme dizzyness even still. At least that is occuring while I sleep. I started at 25mg daily too and SLLLOWWLY worked my way up to the 100mg I am on now.

    The side effects were rough but they were no where near as bad as some of the other drugs I have tried. Bonus of all BONUSES I found that it does help relieve some of my nerve pain as well. (I discovered this by trying to wean off it once.) I did try all the other usual suspects, Neurotin, Lyrica, Elavil, Cymbalta and could not tolerate the side effects. Story of my life!

    The very best thing about Topomax is that it is one of the few out there that does curve your appetite. When I FIRST went on it and got up to my daily dose I lost 20lbs. That was after trying a few others and putting on 20lbs so I was thrilled with that.

    I'm pretty sure we've been here before. LOL!

    Good LUCK with it.

    Go up slowly and talk to your doctor about taking it all at night if the side effects are too much during the day. That is what made the difference for me.
  • i have been on topamax for many months now and have not experienced any side effects. the medication works well for me and i am happy with the results.. :D i hope you have the same good results and the medication works out for you. Jenny :)
  • Thanks guys! I kind of feel like maybe the side effects should be worse, LOL! I'd heard horror stories! I'm having the dry mouth/bad taste, and am feeling a little jittery (however, I felt jittery a lot before I went on Lyrica, so maybe this is normal, LOL!). I had a hard time getting to sleep the first few nights as well, even though I take Ambien and usually am out like a light.

    Yes, I gained 22 lbs in 6 months on Lyrica. My appetite is already back about to normal from "stuff everything in sight into your mouth asap."

    Frog, I did ask about it before I switched. I guess I forgot you responded, LOL!

    Jenny, when did you start to notice a difference in your pain level? It only took about 2 weeks with the Lyrica, but I ramped up much more quickly.

    I hope this works. Next stop would be Neurontin.
  • hi!! i noticed a difference in my pain levels in 2 or 3 weeks. good luck! Jenny :)
  • Correct me if I have got the wrong idea but it sounds like you are one of the many that is looking for help with nueropathic or nerve pain and maybe I can help if that is the case.....

    I my self am lucky enough not to have nerve pain (though I have massive back pain which makes up for that) but my Mum suffers - 9yrs ago discectomy and massive clean up of broken bits they removed from around the area and before the op she had major siatic pain, and my husband had his discectomy nov 09 for the same thing with huge nerve pain.

    Anyway with mum they were not able to find meds to help so she just had to put up with which nearly ruined her, but well done medical advances as my husband for the same thing was given a drug called GABAPENTIN, which is normally used for epalepsy but worked wonders for his nerve pain!

    We live in New Zealand and I have noticed that alot of the drugs that are used in the USA are not what we get here and if they are the names often differ but google the name and you will find the other names it has so you could ask your Dr. Another that is used here but I dont know if it works too well is the likes of amitrip (amitriptyline) but really the gabapentin worked like magic!

    If anyone is interested I can get him to get me out the box and I can put all of the details up for you.

    Im not a doctor of any kind just another back pain patient, and the above is just what I (we) have seen and experienced. Remeber always ask your doctor!

    Hope this might help, good luck!
  • Happymom,
    It's been a few weeks.

    Just wondering how it's going with the Topamax. What dosage you are at? Are you getting any pain relief? How's the side effects? Are they settling down if any? And of course you know I want to know if you have noticed a decrease in appetite or any weight loss since you went off the Lyrica and went to the Topamax!

    It's the little things in life sometimes!
  • Thanks for asking, Frog!

    Side effects definitely settling. I'm at 150/day now and the main one I'm still noticing is the weird taste. I can handle that.

    I'm feeling fatigued and dizzy but I can't for sure blame Topamax. I think it might be a new diuretic I'm on for high blood pressure (yeah, I'm only 43. Yeah, I'm only a size 16. Pain does weird things to a person).

    I'm only about a week into the 150 and just now noticing some positive impact. I had definitely noticed the improvement with the appetite since going off of the lyrica, but more to a normal level, and the pain was pretty bad. I just had RFTC and it's not good now, but I'm feeling a little more active. What was your max dose?

    Yes, a little word finding difficulty and short term memory stuff. But I was willing to accept that with the lyrica, so the question will be... can it help with the pain? Otherwise I'll have to try Neurontin. The weight is going to be a huge issue now that my blood pressure has become a deal breaker. The diuretic still hasn't brought it below 150/110, blech.
  • Hey there,
    Good to here you are starting to feel some positive impact!

    I was taking 150mg for quite awhile. That's the max I've ever taken but have heard of people taking much more. I actually stepped back down to 100mg when my vision started going blurry. My hopes were I could get the vision to settle and still get some of the relief because I was so thrilled with finally getting some relief I didn't want to give up completely on the drug. (Sounds crazy I know but I have tried SO MNAY!)

    The weird taste you do eventually get used to but I really do think it has something to do with the whole "you may lose weight on this drug." It sounds like that's not such a bad idea for you right now. As far as the fatique and dizzyness are you taking all of it at night or part during the day. Mine symptoms of fatique and dizzyness seemed better controlled when I started taking mine all at night.

    Good luck on your pain control along with your BP and weight. The Topamax may be just what you need. Your activity is increasing. If you get the pain relief and the suppressed appetitie along with it the weight will begin to come off. This all should decrease your BP. Way cool if you get this all under control and get off that diuretic. But what the heck do I know.
  • Oh, I forgot to mention, my sense of smell has become oddly acute!

    It's not just the taste thing, I'm just really not hungry. Things still taste good. I mostly have the odd taste when my mouth gets dry. I find I get low blood sugar and never even thought about eating, so I almost have to set an alarm to eat- and yes, I must lose weight, so no problems there (stage 2 hypertension, sudden onset).

    I think the dizziness is my new hypertension drug, really. It has no correlation at all with taking the topamax. When I've looked up the symptoms they seem to point to a potassium deficiency, which is not common but does happen with thiazide diuretics.

    So I'm going to ask to try 200. Although I might never eat on that! (I am still eating 1500 calories/day , so don't worry too much!).

  • p.s. I was exactly the same way about the lyrica. I knew the weight was not going to be good for my health, but I didn't want to give up on the lyrica! It worked SOOOOO well! sniff.
  • I did the same thing when I first went on Topamax. Eat? Oh, I'm suppossed to eat? Well, why didn't somebody say so? LOL! Same thing with the sense of smell.

    You never get back a huge appetite and your stomach shrinks. Weight loss was a given! Yeah!

    I have a few friends that take more than 200mg so you should be fine.

    Keep me posted.

    Good Luck!
  • Seriously! Starving is no longer a word in my vocabulary, unless I use it to describe "passing out from low blood sugar."


    Be careful! Keep the snacks around. I used to keep a box of those smores flavored fiber bars in my desk and force them down just to make sure I had something healthy in me. (I knew I would go all day without eating.)

    That and suck down the fluids. (Maybe, I'm thinking, Nah, Patron is probably not a good source of fluids. Darn!)

  • just checking in on you and i am so glad to read you are having some positive results.. the blood pressure is a worry though!!! take care and remember to eat!! i have just started to eat a small lunch to see if that helps settle my tummy some. good luck and keep us posted!! Jenny :)
  • I tried Topamax short term as it made my brain fuzzy but if it chills out over time then it is worth it and my PM said to take it in the daytime instead of night to see of that helps? I am thinking of alturnatives to the infusion pain pump... looking at all options!
  • Barb,
    Everyone responds differently so it's hard to tell.

    When I had a hard time tolerating the side effects of the drug but didn't want to give up completely on the benefits my doctor told me to just take it all at night and see if I could tolerate the side effects better.

    I now take mine all at night. I don't notice much change in the benefits but the side effects are more tolerable this way. (I do notice if I am up wandering around in the middle of the night I am more dizzy. Good reason to just stay put in bed.)

    Not sure if this helps.

    Good Luck.
  • Yes, fuzzy brain definitely evens out over time, more so than it did with lyrica, at least for me. I take it twice a day. So far, no serious side effects other than the appetite and icky taste, but since losing weight is a life or death proposition for me at present it's not something I'm complaining about.

    I don't think it's as good at the pain control as Lyrica was, but it's definitely helping (if my doctor didn't keep poking needles in my back, I'd be feeling better ;)
  • My doc just gave me a script. Not filled yet. My sister has been on it for a couple years to help control her migraines. My doc thinks it will help the migraines and the nerve pain.

    The problem my sis said is that she can not tolerate the generic form and maybe that is a negative factor for some of you. My sis has lost about 30# (all she could afford to loose) then the weight loss tappered off. She is taking 175 mg daily.

    Interesting enough there is a new med coming out for weight loss (just announced by the FDA last week) that combines Topomax and Phentermine. My doc says that after a couple months she would let me start back on phentermine. I have gained about 35# since last summer.

    I heard the taste in your mouth is like copper pennies- my sister does not mention the dizziness. I am already dizzy all the time so that wouldn't help me much.

  • hi,

    I thought I'd add a little bit here. Years ago, I suddenly started getting cluster headaches in addition to the migraines I'd had since I was a child. As bad as I thought my headaches were... nothing prepared me for the agony that a cluster headache introduced to my life.

    I went through several different meds in an attempt to work with these, finally the neurologist put me on topomax... started out at 25 and ramped up to 100mg a day. It, more than anything else helped my headaches... but after about a year, I started noticing the headaches started to come back(cluster, because the migraines pretty much continued as usual for me) and worse to me at least was I started having memory issues.

    I weaned off the topomax and have not taken it since, though the thought of pain relief makes me think I could just carry a notebook for remembering stuff ;p I don't remember (HAH!) whether it did anything to my weight or appetite.

    I would suggest talking to your md to see if you could ramp up the dosage slowly so you'd be more likely to notice changes due to the medication.

    while I've had back and knee issues most of my life, I cannot say that I ever noticed that it helped in those areas... on the other hand, I was almost 10 years younger, a lot lighter and I guess, not as broken as I am now.

    I wish you luck in your search for some pain relief!
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