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Posted 9/1/2006 8:33 PM (GMT -8)

I just started Topomax 3 days ago and have not really felt any side effects yet.  I just feel really relaxed when I take it and fall asleep pretty quickly which is a nice side effect!  I went to a chiropractor today who suggested that I try a mix of feverfew, magnesium and B-2.  He says that if that works, I can get off the prescription drugs all together.  That would be great as they are very expensive as you all know.  Right now I am taking Maxalt which is only working about half the time.

Have any of you tried the herbal route?  How did it work?

Posted 11/7/2006 6:48 AM (GMT -8)
I am bumping this up because I am on stupamax. Just hoping others on it will put in their two cents.

I am so leery of it I am starting on 12.5 mg.
Posted 12/7/2006 11:05 AM (GMT -8)
I too was wondering whether I should get on Topamax or not... I was supposed to be in a clinical study for it to be tested, but the month they had me do the strict migraine journal I had missed the migraine day count by .3!!! Thats only 8 hours! Oh well though because I either would have gotten the meds or gotten a stupid placebo. And I was really wishing for the meds (knowing my luck would give me the placebo) SO, the doc told me I could take the info for Topamax to my physician. I have an appt. in 6 days so I was just going to grab some info on Topamax from those who have actually tried it. I'm very worried about the cognitive side-effects as at work it is VERY important for me to not make mistakes and being 20 and only being at the job for 5 months and still learning/having to clean up others' mistakes, I always catch crap for it. So I'm pretty sure that if I were to get even dumber, lol, then we'd have some problems. However, here I am, either not being able to concentrate AT work to not even being here about 1 day a week, maybe if I'm lucky and HAVE to be there I'll go 2 weeks missing one day only... so I figure the cognitive probs may not be so bad. I guess as long as I tell my boss that I'll be a little bit on the idiot-side since I'd way rather have that than a migraine. Emotional pain from getting yelled at or picked on by coworkers for being dumb is MUCH better than the migraine pain. Anyone let me know what you have experienced and if you think its a good idea or not? Also, hair-loss? Sexual side-effects (negative, of course)? Anyone had those? Any other strange ones?

Post Edited (Mandalynn210) : 12/7/2006 12:08:11 PM (GMT-7)

Posted 12/7/2006 2:11 PM (GMT -8)

Hi Mandalynn,

Topamax is different for everyone. My advice is to increase the dosage very slowly. Follow your doctor's recommedations and keep in close contact.

I started experiencing the "dopamax" :-) effects at 100 mg. I started taking 25 mg. I experienced problems at work because they thought I was making mistakes after they had told me about problems. I just didn't remember.

The cognitive side effects were the worst effects I felt, but as I said, everyone is different. Go slow and if you start to experience something out of the ordinary contact your doctor.

Let us know how it goes.

Nicky

PS I also experienced a change in taste. I don't like pop anymore and love sparkling water / club soda now.

Posted 12/7/2006 2:21 PM (GMT -8)

Hi Mandalynn--

Okay, had this whole post typed for you and didn't hit the post reply button and moved onto the next thing---hmm perfect example of Topomax side effect!! Anyways, I have been on this med for almost 6 weeks now, and was very leary of it. But with my doctor's recommendation as it being a good match and well just plain out desperation--I finally made the decision to give it a whirl!

Side effects--oh yeah!! Hmm, let's see: memory/word recall: can't always come up with the right words at times, and forget what I was going to do or things that need to be done, etc. Seems to be getting somewhat better as time goes on, after about three weeks seemed better, then he upped dosage, and well there it went again!! I've learned to take it in stride and even give those around me a few good laughs...

Things taste funny, especially soda pop, has gotten better over time. Tingling in feet,--ouch (has got to be my worst side effect), definently is decreasing as time goes on, but very annoying and not a comfortable feeling!!! No sexual side effects or hair loss for me. Weight loss and decreased appetite were a great bonus side effect of this medication for me (definently needed that)!! Hmm, think that is about it, but may have forgotten something-LOL tongue !

As for effectiveness, not the best person to judge it by, I haven't been on this medication that long--currently I am up to 100mg. I also take a combination of 4 preventative medications at this time, and they were all started within a relatively short period of eachother.

Hopefully, others will come along and give you some more input as to their experiences with this medication! I wish you good luck with this. I think it is a very hard decision when it comes to medications, and its always good to get others experiences and put together a pros/cons list and talk with your doctor about your best course of treatment!!

Posted 12/7/2006 4:09 PM (GMT -8)
Thanks. I am up to a whole 25 mg now...all I have noticed is that macaroni and cheese tastes dreadful. It probably does anyway, LOL.

I tried a whole 12 weeks on the migraine trigger diet and none of them seem to be problem...at least, I knew the ones that were and cut them out years ago, so none of the others seem to be. Cheese never was.

Posted 12/8/2006 6:54 AM (GMT -8)
Hi guys, thanks for your responses. I keep trying to convince my mother that this may turn out to be a good thing and I'm just going to dwell on it all the time if I don't give it a whirl soon... sounds like it is worth a shot as long as I keep it on a low dosage for a while then up it very slowly. It is my call in some ways but my mom doesn't want me to turn into a basket case since I'm in school AND work full-time. I'm not sure!!!!!! I guess all I need to do now is talk with my doc and see how much insurance will cover (if any) and weigh my options from there. I posted a get to know everyone topic (survey kind of thing) and am trying to get some good info there and also get to know everyone. I'll let you guys know what happens Wednesday at my appt. and until then, any other feedback on Topamax would be lovely!
Posted 12/10/2006 5:50 AM (GMT -8)

Hi Mandalynn,

Parents, family members and even friends often have good intentions with their comments and concerns, but if they don't experience your migraines they really don't understand how bad it is. Yes, topamax can be a problem, but recurrent migraines can be a far worse problem. Sometimes I have to take my doctor's advice over my family's because my doctor is professionally trained and my family is usually acting out of fear. There is just as good a chance that Topamax might work, you'll have minimal side effects and very few migraines and be able to go to school and work. If not, you can stop taking it. You won't know if you don't try it.

I'm not trying to push Topamax, I've had my challenges with it. But I would hate to see you miss a solution to your migraines because a family member is afraid for you. If you feel okay with it after talking to your doctor and discussing all of your concerns then it's up to you to decide. It's also okay to decide not to, because you don't want to risk the side effects. Make the decision by being well informed rather than afraid.

Good luck.

Posted 12/10/2006 5:28 PM (GMT -8)
Thanks for all the help guys... I've spoken with my mom and finally convinced her EXACTLY what you said, Nicky. To try it and if I don't like it, stop! I also was suprised yesterday (and very relieved) to speak with a 24 year old family member of my boyfriend who took it for 8 months and loved it. She did say she felt a little weird, didn't drink alcohol for the first month and was only up to 50mg the whole time. So as I have many options it sure makes me feel better.

My mom was just afraid that it being a strictly taken medicine, that I'd HAVE to be on it for a certain period of time. She's also worried about the cost. But think I took at least $150 worth of Imitrex in the last 2 months. The migraines are just getting out of control. I've had one non stop with all kinds of different problems going on 6 days now. Ugh... love it.

Just wanted to thank you guys! This site has been a blessing... I definitely needed to talk to people who have gone thru these things rather than those who will never even KNOW what its like. The side effects are still a little bit of a concern for me, but like you all said, I'll never know until I try. Plus, after talking with the cousin, her reason for getting off of it was pregnancy. But she is soon going to get back on now that she's done breast feeding.

I'll definitely let you know how things go... I'm actually really excited for Wednesday! Maybe this is my answer! (Then again, I'm one to get my hopes up) :(
Posted 12/10/2006 6:55 PM (GMT -8)
I had a terrible time with topomax. I get severe intractable migraines. I was hospitalized last year for five days with one. The neurologist put me on topomax. I have lupus with a small fiber neuropathy (feels like tingling in hands and feet). Topomax made this pain a LOT worse to the point where I couldn't sleep because it hurt so much even with my medication for the neuropathy pain (Neurotin and Cymbalta). Also, topomax killed my IQ. This doesn't work for a pre-med student. I got a C on one of my calculus exams because I had a very very difficult time computing numberes. I stopped the topomax and started seeing a new neurologist. Currently I'm on 50mg of Amititryptaline which helps both my neuropathy and migraines.
Posted 12/12/2006 8:27 PM (GMT -8)
Doesn't look like you need another response but, here goes anyway-
I've been on Topamax 200mg a day for almost a year. I was getting a migraine nearly everyday. I'm not talking about a bad headache everyday, a full blown migraine. Complete with vision loss, throwing up and wanting to shoot myself in the head and it end it all type feelings. Topamax has been a real life saver. Nothing else was working. At first the side effects were hard to deal with, I got every side effect in the book. My taste buds changed, I lost 15 lbs, I couldn't remember my own phone number, my fingers and toes would fall asleep, etc. The side effects have all gone away and I rarely get a break through migraine. Well, I still don't like soda, but who needs it?
Posted 12/14/2006 7:53 AM (GMT -8)
Thanks for all your responses guys! Seems like either you love it or you hate it!

Well, I went to my PHP yesterday and he gave me the starter pack. I'm following it just like it says, 25mg in the evening for the first week, 25 in morn. and eve. for the 2nd and 25 in morn. and 50 in eve. for the 3rd week. So far, not having any side effects. Only thing that bothered me was that he made the side effects sound really light. Like losing maybe a pound (haha) and SOME tingling. I just sat there and nodded, uhhh huh. No mention on the dumb feeling side effect though!

Anyway, I think I'm going to use this to vent a little as well...

Yesterday was a bad day for me. I took the day off because my boyfriend was going to Cancun with his Mom, Brother and Step-Father... had to take them to the airport at 5:00am. He'll be gone till Sunday. Luckily I have all kinds of things to do and people to visit! Also took it off for the PHP appt and a dentist checkup.

However, in between I went shopping and happened to leave two $50 giftcards in a dressing toom at the mall... (I just HAD to try on that sweater) So, when I finally did realize it, I was wrapping gifts at like 6:00 that evening. So I had to call Victoria's Secret, get the card numbers, call the giftcard center and have them shut off. Now I have to fax them a statement of the credit card I purchased them on so they have proof of purchase... long story short and SOME relief and good news, I get new ones issued!

But wait... I work full-time at a place I am not too fond of (and have no problem taking time off) plus, I work with an older friend of mine who got me my last job at the "drama" salon. Anyway, after all this is cleared up, I get a call from her. She is the owner's ex-daughter in-law and over 40. (its a small, family owned business, so the family can do whatever they want, you know how that goes) Well, supposedly they are upset that I wasn't there because someone else decided to take the day off as well. So I get in trouble. When I've had the day off for almost 2 months knowing that my boyfriend was going to Cancun.

Long story short... some words were said, I was plain getting crapped on by the company in the first place. I tried hard for as long as I've worked there to be happy with it and make it all work out. But after all the drama and all the migraines I've had, I just finally snapped. In other words, I quit my job last night. And for some reason, I don't care. Maybe its because of all the crap built-up inside me with their b.s. Maybe its because I am going back to school in January anyway? Who knows. But its no problem for me. Everyone's in good support of me. BUT, I still had to bawl my eyes out. So I'm feeling the aftermath from that today. The only thing that bothers me now is I haven't heard from my boyfriend (who I live with) and its his birthday today. He has no idea what happened last night. I'm not even sure if I want to tell him since he's enjoying himself in Cancun. I just want to know he's alright and wish him a happy birthday!!

I'm lucky to have such good people around in my family and friends where I live and on here. I want to thank you guys for listening and helping me in my decision to try Topamax. I'm definitely excited to see what happens.

I'm also thinking it was a good thing I quit my job since I'm going to be on Topamax and I may need to lay low for a while and not do much problem solving :) Luckily I have money saved up! Just not sure if I can sit around and do nothing for more than a week... haha. Anyway, thanks again for the advice, support and help guys. It really does mean a lot to me to be able to come here and get some relief!

Mandy
Posted 12/21/2007 8:03 AM (GMT -8)
First, I'd like to apologize, I am new to this forum stuff, and I have no clue what I'm doing! =-/

I was referred to this site by a co-worker and what a help it has been! I was put on topamax about 5 weeks ago for frequent, persistant migraines/headaches by my family physician. I have had trouble with headaches/migraines for years and had been on Zomig for treatment when I got the migraine... Ok, so basically, I got a migraine, turned off the lights, closed the door to the world, took a pill, and slept it off... what a great way to live life! Problem was, I couldn't take Zomig when I would get a migraine at work because I couldn't sleep at work! It was excruciating... I couldn't think clearly, function properly, nothing made sense, and the pain was more than I could bear!

On top of that, my migraines were becoming far too frequent and the Zomig quit working. SO, here I am taking a medication that I knew nothing about until I met you fine people! =-)

My doc warned me about a lot of the side effects and I felt very prepared. The one thing that she failed to mention.... the fact that it's nicknamed "DOPAMAX!" Duh! I thought it was just me being an airhead! I kept thinking that I was losing my mind at 23 and my family and I have been very concerned. So now, I can't think clearly, i'm forgetful, and things don't make sense... but I'm pain free!!!

I occasionally get headaches, but I can take advil and it will go away... I've never had that happen before! I am short tempered and irritable, I cry alot and I get tingly a lot... my doc told me that it was a mood stabilizer. I thought it would make those symptoms better not worse??! One of the common side effects is weight loss and considering I need to lose 25lbs for my upcoming wedding, doc and I thought Topomax would be great! So far, I get full quicker, but I'm hungry more often and I haven't lost a pound! grrrr! When did ya'll start dropping the weight?

Thank you for all of your helpful input! I am not crazy!!! =-) YAY!

~Jessie from Ohio~

Posted 12/22/2007 1:18 AM (GMT -8)

Jessie!

Welcome to Healingwell...Sorry to hear you are struggling with migraines and/or side effects!!! I can tell you I took "dopamax" off and on for years. The biggest and best advice I have for you is to take the SMALLEST dosage possible and start slowly/increase slowly. I got up to 400mg a day (hey, I'm a tough case, what can I say?!?! lol) I did really well on it (the only reason I stopped was price and no insurance)

I did have some tingling in my feet, more than my hands...and I had trouble with obvious words.

Hopefully your body will adjust, and if not then talk to your doctor about adjusting the dosage so you still have relief but not as much on the side effects.

Keep us posted!

Posted 12/30/2007 7:57 AM (GMT -8)
sad


HELLO THIS IS MY FIRST POST. I HAVE HAD MIGRAINES SINCE THE BIRTH OF MY 2ND CHILD.

I USED TOPOMAX 2 YEARS AGO

THE PLUS SIDE
LOST WEIGHT
MIGRAINES GONE

THE NEGATIVE SIDE
AFFECTED MY FOCUS WHICH RESULTED IN 2 TRAFFIC ACCIDENTS

I NO LONGER TAKE TOPOMAX AS A RESILT . ONE OF MY TRAFFIC ACCIDENTS WAS SERIOUS, I SUFFERED A CRACKED RIB, INJURED ARM, AND INJURED NECK.

DO I RECOMMEND THIS FOR OTHERS?
IT DEPENDS. JUST TAKE NOTE AND SEE IF YOUR FOCUS IS OUT OF WACK.
Posted 1/1/2008 8:29 PM (GMT -8)
Hello,

I usually post on the lupus forum, but occasionally visit this one. When I saw this topic aabout topamax I had to respond.

I have had migraines since I was 7 years old. After I had my children, they became less frequent altho they did not go away. I never took anything to prevent or abort them (those drugs weren't around when my headaches were super active). I was on topomax for seizures that began when I was 48 or 49 (can't remember) and the headaches remained severe and frequent. I didn't suffer any side effects from the topamax and it was at a much higher dose than normally given for migraine control. My neurologist then added verapamil (titrating the dose until it helped) and my headaches were gone!

I see a different neuro now due to insurance coverage. He decided to get me off of topamax to see if it improved my cognitive abilities. I knew it hadn't but evidently he has to see for himself. (the creep!) Of course my migraines are back; the are lasting for days at atime now with varying intensities during those days. When I called the neuro, he said to increase my neurontin by 300mg per day. It has helped but not like the topamax. But again, the key to the topamax control was the addition of verapamil.

By the way, my seizures and migraines along with many other symptoms (the cognitive problems being one of the other symptoms) led to the diagnosis of Hashimoto's encephalopathy. If you google it, you find that it's very rare. I feel fortunate that my first neuro who diagnosed me was well acquainted with it and had treated it previously. Anyway, he was at a major teaching hospital that is very well regarded. He was also an "expert" on migraines.

Sorry this is so long. I hope that my experience can help you. Good luck! I know how horrible these headaches can be.

emmie
Posted 1/4/2008 1:21 PM (GMT -8)
Hi everyone, just stumbled on this site and wanted to warn everyone that the side effects of Topamax can be life altering. Heres my story: I decided to try Topamax, again, on the advice of my GP. She is really into "curing" my migraines. I'm forty-three and have been diagnosed as chronic, fifth-generation migraine sufferer, I don't have any such illusions. Also, my first diagnosis was at the age of three so I figure I'm stuck with them. Anyway, I don't know if my doctor upped my dosage too quickly,25mg to 75mg in less than 3months or if the medication was just poison to me but I ended up in a locked down psychiatric ward. I know some of you write about feeling sensitive or weepy but this medication made me unable to deal with everyday life. I am not depressive, and I generally don't cry. By the time I was on 75 mg. for four days, I couldn't stay awake-sleeping from 11pm to 3-4 pm, and in the few hours I was awake, I would cry constantly. Finally my doctor asked me to commit myself for my own safety.
I was totally misled as to how I would be treated-my doc said I'd be monitered as the medication left my bloodstream and I would be treated effectively for the migraine I had at the time. None of this happened. After signing what I thought were voluntary papers, my husband and I didn't like what was happening and decided to leave. It was at that point that the doors were locked behind us and two burly orderlys were brought into the room. In the state where I live, I guess voluntary is a very fluid term. Since it was a Saturday, I was locked in until Monday. With the hardcore rehab individuals. My roommate was detoxing from heroin cold turkey, laying in her own waste and vomit. The doctors repeatedly asked me how I became addicted to Topamax! I never did get through to them that it is not an addictive drug,and I spent the next 48 hours just trying to survive. I was never monitered and in fact at one point when my blood pressure dropped to 80 over 60 instead of being concerned these people told me to go do some jumping jacks or something. I was afraid I'd pass out and no one would know what to. I finally got myself released, but now I have this in my medical record and I'm really angry about it. Even though I'm aware that I was neither addicted to Topamax or legitamately suicidal, anyone else reading my records won't make the same conclusions.

PS: as if the holidays aren't already stressful, this all transpired 2 and a half weeks before Christmas.
Posted 1/4/2008 2:58 PM (GMT -8)
Hi abishag,

Welcome to Healing Well. So sorry to hear of the awful time you have had. It was an completely dreadful way to be treated and my heart goes out to you as I was very depressed on Topamax myself, but thankfully was not treated like that!! It is a sad fact that Topamax has this effect on some people, I wish Doctors would make a better note of it!!!

On the other hand, there are a number of sufferers who find Topamax gives them the relief they have longed for without those sort of side effects.

Are you getting some help with the depression now? I really hope you can find something to give you some relief. I would suggest however, that you get yourself referred to a Neurologist who is a Headache Specialist as soon as you can.

Please let me know how you get on, take care

Ann
Posted 1/5/2008 2:13 PM (GMT -8)
I think the holidays are always the wrost for my migraines. I had frequent ones and one that last for 4 days!!! Since I dont do topomax anymore( it got rid of the migraines but made me loose focus with dangerous consequences, 2 car accidents). I had a large icepack on my head. I find an icepack on the back of my neck really helps!

I also use what is called BLUE OIL made by AVEDA , I rub it on my temples and it helps. You can order blue oil on the AVEDA website. I have a friend that is a migraine sufferer amn she says it helps her too.

People that dont have migraines have no idea how BAD they are!
Posted 1/10/2008 12:50 PM (GMT -8)
I so appreciate this site.  I never trust docs but real people who get my pain I trust.  After increasing migraines over the last 15+ yrs I'm ready to try a daily med and Topamax interest me.  I'll see my neuro well informed thanks to this site but I'm wondering what else have folks tried with the kindest side effects?
Posted 1/10/2008 12:53 PM (GMT -8)
p.s. I swear by Tiger Balm when a migraine hits.  It gets hot as hell, but acts like a heat pad or good massage where it hurts in the back of the neck, shoulders, and temples. Make sure not to get it in your eyes!

Posted 1/10/2008 1:17 PM (GMT -8)
Abishbag, it breaks my heart to hear how you were treated!!!!! I hope you are receiving better help now. I think part of the reason some people think topomaz is an addictive drug is because it was widely reported that Ann Nicole had abused this drug for loosing weight.!!!!

I have used Tiger Balm also. Also the Swiss oil OLBAS helps too. Soak some of the oil and mix it with warm water onto a washcloth and place it on your head. Right now I am using BLUE OIL by AVEDA. I rub some of it on my temples. It is convenient and small enough to carry in my purse.

Massage therapy may work for some of you.

I do yoga.

Also if I have a real bad migraine I eat a whole can of water packed tuna and sometimes that helps. However I am careful to limit myself to 1 can a week because of mercury concerns. Water packed tuna is the best tuna to buy though if you are worried about mercury.
Posted 1/11/2008 6:02 AM (GMT -8)
  In relation to the Topomax side effects, ie; word recall, etc. does anyone know if any of it is permament? As in brain cell degeneration? I, like most of you on here I'm sure, feel way too young to be acting like a senile person. Albeit, this last headache I've had that has now lasted 33 days is telling me different.
Posted 1/12/2008 9:50 AM (GMT -8)
I'm not pushing Topamax either, but here is my story.

I've been on it three years for migraines. I hope this doesn't sound like bragging, but I have a Master's degree and am pursuing my doctoral degree so obviously I have to be paying attention to academic type things. I've had some intricate testing in the past three years. I have not noticed ANY "dulling" of my intelligence at all. As a matter of fact, I recently took a lengthy exam last minute without studying--I knew I could take it again if I failed so I figured I'd give it a try. I passed it with no trouble. I hear a lot of people say Topamax makes them feel "stupid", but it does not do this for everyone.

I've had no other side effects that I am aware of. I think soda did taste funny as I recall, but it's been three years. I drink soda fine now. I wish I didn't. LOL.

I had terrible migraines. They were coming three or four times a week. I had to get demerol at the ER several times. It was so embarrassing to be begging for narcotics at the hospital. Of course they think you're some kind of crazy drug addict. It was so demeaning.

Since the Topamax, I've had about two migraines per year. I take two Aleve, followed by an Axert to relieve them. This always works.

This is just my story, everyone has to do what is right for them.
Posted 1/12/2008 12:26 PM (GMT -8)
I am glad to hear that topomax works for some. I did find it got rid of my migraines, but I seemed to have more trouble sleeping and my focus was off causing me to have 2 car accidents. I found myself alert but focus was lacking. It was all in the focus...........that is where the problem was. When I went off the topomax my focus improved and went back to normal.

With any other drug, you dont know till you try it.
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