Posted 12/13/2005 4:19 PM (GMT -7)
i have been on topamax for 4 weeks and have only had one bad migrane.  I am up to 100 mg.  I have tingling and feel doped up alot of the time but thie side effects are gettig better.  The problem I am having is with my mood I am having the worst bout of depression I have ever experienced in my life.  I am also experiencing uncontrollable anxiety.  My ativan does nothing.  I see my doc in two days.   Has any one else had this?
Posted 12/13/2005 9:25 PM (GMT -7)

Hi wenmarie,

Unfortunately depression and anxiety are a side effect. It does get better eventually. If you're not on an anti-depressant I highly recommend it. It makes it much better. Effexor is apparently a good one for chronic pain and as an anti-depressant.

Fall seven times, stand up eight.
                 --Japanese proverb

Posted 3/1/2006 8:17 AM (GMT -7)
100% !!!
Posted 3/3/2006 6:25 AM (GMT -7)
I have a thread on topamax further down the list - I go to the doctor today as it is the two week follow up appt, I've been on 50mg for this entire week. I feel fine, but I've had this dull headache all this week, but then again, life has been coming at me hard, my f-i-l passed away this week - the police notified us of finding his body in his apartment (we couldn't get through to him on the phone, his neighbors hadn't seen him...) so hubby was gone to his mother and I was here with the kids, so I can't count anything I feel right now as normal.
I've done research on topamax, sometimes I guess if we can get through the side effects, we have to decide if the the benefits outweigh the negatives. I know 50 is still low and he will increase it probably to 75 or 100, but he said he was doing it slowly, so we shall see. Like I wrote, this hasn't been a normal week for me, so I don't know what he'll want or what to expect.
I have no more migraine medication, and from my understanding, this med is prevention, but it doesn't get rid of them, so I need to get refills, right? This will be fun when I get to convince him I am not a junkie, I just know what works for a migraine with me. My doc is just adament against anything beyond motrin or tylenol, he'll put you on depakote or bp meds in a heartbeat, but nothing beyond that, just deal, I must be hunting for a fix...that's why a bottle of 20 t3 from my dentist a ways back still sits in cupboard...(I hate that stuff, gives me heartburn, but it does take care of tooth pain).
Anyway, Im off to get ready for the doc visit!
Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."

dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

Posted 3/3/2006 8:24 PM (GMT -7)

I have been on Topamax, this is the 3rd time now... the only reason I have been off of it is loss of insurance...I am up to 400mg. I love it, it is the ONLY thing that has managed my migraines.

I would sell everything I own (except my dog) to stay on it to keep everything in check. As far as side effects, I occasionally have "pins and needles" and a small twitch in my left cheek...but in exchange for debilitating migraines,...I would gladly trade them in any day.

For those who don't like it, FINE...we are all entitled to our own opinion and I know everything doesn't work for everyone....I just want to share with those who are interested:

I think that there are combinations of things that work differently and mine was Topamax, Wellbutrin and Inderal....and it took forever to make this work (as far as dosage and combination)....but the right doctor, the right medications and educating yourself is the best way to get there....

Now, I still struggle and have bad spells. Right now I am trying to get back to "good" since I haven't had insurance for 3 months and trying to get back on track...

Any questions...feel free to ask!


Sara-Migraine/Headache Forum Moderator
Thanks for Visiting

Posted 3/12/2006 7:38 AM (GMT -7)
I was on Topamax but had bad side effects. No taste in mouth. bad tingling in hands and in face. memory loss. Have headaches for 5yrs now daily and seen several doctors with no help. migraines meds don't work. allergara -d worked for 2 months then stopped. currently on different meds which don't work.
Posted 3/12/2006 8:49 AM (GMT -7)
hi there - i am at the 50mg dose and it seems to be working, my pcm said if i need to go higher because migraines seem to come through, higher than 100mg, he will send me to a neurologist, alrighty then.
so far i've experienced the tingling in my hands, feet and face, and constipation (lovely when you have ibs already). I had what i thought was going to become a migraine, took my zomig and 1 hydrocodone, slept for one hour and it was gone, never got rid of a migraine like that before.
not only that, but the last two weeks have been out of the ordinary. my f-i-l died suddenly of a massive heart attack and we got the news in the middle of the night and my hubby had to drive up to ny for his mom and then to PR for the funeral and such... it's been stressful to say the least. i thought the doc wouldn't want to see me in light of everything, but in light of everything that i wasn't down with a migraine is good, so i'll take that.
i think the mini migraine might have been one, or maybe needing my allergy meds, which i've begun again, tis the season, i'm just glad it went away.
i have terrible dry mouth, but that also comes with the lupus and stuff and the other meds i have to take, right now my med of choice is those vitamin c candies, they taste good and maybe they are helping and i am not swallowing yet another pill for which i am grateful.
i'll just go day by day with this and see how it goes, so far, i am thankful it seems to be working and at a low dose AND i am back to what i weighed before chirstmas THAT is nice!
Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."

dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

Posted 3/14/2006 7:40 AM (GMT -7)
I have to question what I last wrote. Yes, stuff has been going on in my family and I thought that resonsible for the other things I was feeling, BUT, I deal with RLS and it has been out of this world and the only thing I can attribute it to is the topamax, and my anxiety is getting out of control and that's the thing I want calm.
Two nights ago, the RLS was so bad, I would have almost preferred a migraine.
Guess I am going back to the doctor again, and he'll refer me to a neurologist. Honestly, I'd rather just be treated for when the migraine hits, than more pills to add to my daily cocktails.
Anyone have RLS and feel funny with these meds? I don't believe that I can wait and see if this goes away with time, I'll be hooked on some other drug instead just to deal with my legs that make me feel like I cam going out of my mind.
Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."

dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

Posted 3/25/2006 8:35 AM (GMT -7)

I had tears fall from my eyes when I read these posts. I must thank all of you before I begin. So, thank you. I'm a 33 year old woman (obviously by my nick name) who has suffered with migraines my entire life. Well, most of what I can remeber of it. The first time I was treated for it was when I was 18 and had to go to the ER for a shot. I slept for 3 days.

I have been through the gammit of drugs, pain meds, shots, blood pressure pills, you name it, I have been on it. Unless they have JUST come out with it. I have tried it. Then, they put me on Topomax back in July. I still had migraines but they weren't as bad. Ok... cool. Then I got to where I only had them at "that time" of the month. Not a problem, my neuro treated me for that. So they weren't as bad. I have to mention, back then I was as randy as a stallion with a mare in heat. "I want some more" was all I ever said. Now... I'm a month a half away from my wedding date. And, well, I can't get it up, so-to-speak. When I do engage in premarital play... I cannot play to the utmost of my ability, whereas, previously I was blessed with the ability to play and play and play until the cows came home. I miss that. Desperately. So does my fiance. sad

Recently, The docs believe I had a stroke. I said "what?" We think you had a stroke". Although, there is no permanent damage and nothing shows up on the MRI, although there was something on the CAT scan. Why they did a spinal tap, I don't know. But, they had to do a blood patch to repair it. My neuro up'd my dosage of Topomax (which although I have to wear glasses now has been amazing) to 100 mg a day, Amitryptiline 50mg, Lyrica 50mg. I have Relpax for when I do get a break through migraine (those are amazing, but only if you take it with Ibuprofen 600mg and then follow in an hour with another Relpax), I try not to take any more narcotics or pain pills or what not.

I'm confused all the time now (just up'd the dosage), no sex drive, iritable, dizzy when I stand up. I stuttered really badly with the "stroke" episode thing... took over a week to come off from that. I have to concentrate on my words. They gave me tons of steroids in injections and by step down packs. I gained weight. I haven't really changed my eating habits. It's incredibly depressing. But, I see a bit of light at the end of the tunnel reading these posts. I'm not alone. Thank you. This too shall pass. Maybe it will all straighten out by the time I'm to slip into my wedding dress. And I better SLIP into it and not have to be POURED into it. tongue

I should also mention that I have a HUGE list of foods that are triggers for migraine sufferers and found that it is pretty accurate.


Posted 3/25/2006 9:01 AM (GMT -7)
congrats on your upcoming wedding. i haven't been on topomax but i know a lot of folks who are. i personally hate the stuff because of the side effects- some people even slur their words when they talk, slow reflexes, etc... scarey but it must help as the docs perscribe it alot. i hope you check out my other post about strategies that have relly helped me. i hate migraine and have the utmost empathy for other sufferes. i even give free massage to people who cannot affoed them if their is related to tight muscles... please check out "worst pills, best pills " by sidney wolf. also a good one is "pills that work, pills that don't" cannot remember the author but excellent reference book.
my sib is an md and they are so busy in today's world that they really don't have time to really know every single drug and it's effects, poor interactions... i find doing research really makes a diofference in how i treat my migraine.
Posted 3/25/2006 9:48 PM (GMT -7)
Thank you for the congrats. Topomax is working so far at the 100 mg dosage but it is causing me to go myopic quickly (within 7 days my eyesight changes drastically) I've changed prescriptions 3 times in four months because of the medication. I finally am "sucking it up" as my ten year old says and waiting until we get the "right" combination for me, and then I will go back in and get new lenses. I didn't wear glasses before November when I went from 50 mg a day to 100. The neuro tried to back me down because of the eyesight change, but well... the dark horse rose up and threatened to take me with him. (Which is a little odd cuz I'm getting a dark horse for my wedding present.. heehee) For me, I chose to take the side effects. I just didn't realize that some of the other things that were going on were BECAUSE of the Topomax as well.

I didn't realize the forgetfulness and the problems with remembering words and dizziness and no libido and I could go on. But ya'll have given me hope that they will dissipate. I will once again be me. My fiance says I'm no longer as bubbly as I once was. Actually last night, I have the problem with sleeping, but I finally slept. Do ya'll have strange dreams? I was dreaming of playing in the snow (as an adult) Very vivid dream! We were tunneling through the snow by the fence-row. We had spots where we could get out of the tunnel, but they weren't very big and I went to get out. I could hear them up there throwing snow on me and laughing. I would scoop the snow away and they would throw more down. I screamed at the top of my lungs, "QUIT THROWING SNOW ON ME!!" My fiance sat straight up in bed. I shouted it out loud. I woke myself up and of course him. He thought something was terribly wrong. I told him what I was dreaming, giggling the whole time. Tears were coming out of my eyes, I was giggling so hard. He just laid back and said it was so nice to hear me laugh again. I have some looney dreams when I do sleep.

I'll check out your post. I'm always checking anything about migraines I can get my hands on. My ex-mother-in-law still turns me onto articles she reads in magazines or newspapers if it says ANYTHING about migraines. Food is a big trigger, even a tiny bit, and some of the food you wouldn't think they would be. I found out that I can't handle anything dairy. Not milk, ice cream (oh and I love ice cream), cheese, I think I'm even having trouble with non-dairy creamer. Tomatoes I have found are a trigger for me. Here I am babbling along again.

Have a great day everyone!
Posted 3/26/2006 10:54 PM (GMT -7)
keep a log of those migraines and triggers. i am not to good on the food ones. sometimes caffeine helps but too much hurts... wine is bad and so are some cheeses and too many nuts.

i swear by calcium magnesium! works like indural as a preventative. see my how i deal post.
Posted 3/28/2006 12:57 AM (GMT -7)
I clicked on this site by active on the lupus forum....but thought I'd add some of my experience with topomax. I took it for a couple of years and loved it, especially the unexpected weight loss. That was wonderful. But I started having trouble finding words, then memory loss became increasingly serious, not to mention embarrasing. I felt as though I had alzeimers and could tell that my friends noticed it too. To the extent that they were treating me differently, like you'd treat someone with dementia. So I talked to my primary care doc about it and asked if the memory loss could be related to the topomax. She said she calls it the Stupid Drug because it makes you feel like you're stupid. She had a patient who was a professor and he had to stop teaching. Then he went off the topomax and went back to teaching.

So I stopped it and my memory problems went away in a couple of weeks. Too bad because I loved the way it made me feel and I loved the way it curbed my appetite. But for me anyway, it wasn't worth it. I doubt it affects everyone that way, but thought some of you would like to know, in case you're experiencing the same thing I was.

By the way, the best remedy I've had with my very occasional migranes is accupuncture. It really works for me.

Good luck with your migranes!
lupus, fibromyalgia, reynauds, neuropathy, restless leg, IBS; recovered from cervical and thyroid cancers and hepatitis; hysterectomy;
Plaquenil 400mg; prednisone 60mg; mexotrexate 15mg; neurontin 1200 mg; synthroid; tri-est; triamterene; actonel; carafate; green lizard; calcitrate; multivitamin plus minerals; vitamin e.
Am 56, married, mother of 3 (18, 28, 30) and stepmother of 3 (22, 24, 29) all healthy!!!

Posted 3/28/2006 6:38 AM (GMT -7)

well, my experience with topamax has come to an abrupt end.  I spent roughly a week trying to tough it out with my legs feeling totally crazy and my anxiety way out of control before I couldn't stand it anymore and stopped, from 50mg to nothing.

I might not have given it enough of a chance, but my legs driving me crazy was just unbearable, having lupus and fibro, the fibro especially, needs sleep and my legs just weren't letting me have it.  I stopped the med and now it's gone.

I still have to wonder if it was all the craziness that was going on in my life at the time (my f-i-l passed away totally unexpectedly) and maybe my emotions had part to play and now I am wondering if things since have gotten a little more "steady" that I should try again?  I probably ought to call my pcp and get his thoughts, I am sure he won't be happy that I just stopped, but I couldn't stand it.

It says this drug can cause muscle aches (as well as cure them, go figure, I found this site that gives a play by play of this particular person's experience that LOVES topamax) and maybe because my legs are already prone with RLS it went there?

I did enjoy the weight loss part, got rid of those holiday pounds for me...could've stood a little more, but I will wait and see what the doc says. Oh, and I was SEVERELY constipated, a side effect as well.

Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."

dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

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