Please tell me about Topamax

[ThatCyndiGirl]

The Diamox is no longer working and the headaches are getting horribly worse, even after doubling the Diamox dose.

 

Has anyone here taken Topamax? I'm getting desperate.

[3littlekeets]

I'm on Topomax. I had heard about all the side effects, and its nicknames like the Stupor Model Drug, but was at wits end with my migraines.

 

It has worked wonders for me. My Dr. slowly increased my dosage, and I'm still not at the max allowable. I have had some tingling in my limbs at odd times, but no memory loss (thankfully) or weightloss (sadly!).

 

My migraine triggers vary widely, including stress, so I'm on a combo of Cymbalta and Topomax, and I have Imitrex for the very, very rare occasion that one pops through, which hasn't been in the past 4 months (knock wood!).

 

Good luck! Drugs are so different for each person it is amazing. I tried multiple combos before my neuro suggested this one, and luckily, it has given me my life back.

[ThatCyndiGirl]

Thank you, littlekeets!

 

I should have been more clear (my head was killing me and I was just trying to HURRY UP AND SAY IT!).

 

I take Diamox for Intracranial Hypertension (used to be called pseudotumor cerebrii), not for migraines. The headaches, vision changes, etc. had left for over a year, but back again.

[sassenach]

I believe that Astrid is on that. Run a search. I remember she (I think) had a pretty thorough post awhile back.

 

Ds was on it years ago for Seizures. I remember it had the honeymoon effect, but then fizzled on us. He has intractable seizures, so I can't hold it against Topamax.

[asta]

I've been on it for 9 years. You may PM me if you like.

 

 

asta

[sassenach]

Asta! That's who I was thinking of. :001_smile:

[anotherbrother]

Thank you, littlekeets!

 

I should have been more clear (my head was killing me and I was just trying to HURRY UP AND SAY IT!).

 

I take Diamox for Intracranial Hypertension (used to be called pseudotumor cerebrii), not for migraines. The headaches, vision changes, etc. had left for over a year, but back again.

 

I've had really great luck with Topomax. I take it for Intracranial Hypertension. I started with the Diamox but don't have problems with my vision and the Diamox didn't lower my pressure so the doctor told me I didn't need to be on it. I requested to go on the Topomax specifically for the Topomax and the related benefit of possible weight loss. I did have a fairly long adjustment period with some pretty severe muscle aches, but since then I've been doing really well. I've been really happy at 50 mg which is a really low dose, most people take a much higher dose. I've worked really hard to lose weight and have already lost 20 pounds since May. I'm hoping to get to my goal of losing 10 - 15 more in the next few month.

 

Long story short. Once I got through the first few weeks, I haven't had any major issues. I do occasionally have tingling in my hands or feet. I'm also very aware of my kidneys as I'm already predisposed to getting kidney stones.

 

Hope some of this helps. It's late and I'm not sure if I'm making any sense.

[Starr]

I have family members taking this without side effects. It sounds like it would be worth giving it a try.

[vettechmomof2]

I was in the 1% who developed kidney stones from taking this.

Once passed I slowly tapered off of taking it and had no residual problems from it.

I had no other side effects from it though. No foggy headedness or anything.

[MamaT]

My ds was on it a couple of years ago for his migraines, but even the very lowest dose made him so sleepy that he slept ALL day and night. It was hard to wake him up and he was groggy when he was awake. He wasn't on it long.

[MorganClassicalPrep]

I was on it for almost a year, and now that I have health insurance again I can't wait to get back to the doctor and get back on it. If that tells ya anything! :D

 

I had some tingling in my face and hands, but that went away.

I did have a few moments of "huh?" but I was on a pretty low dose and my body quickly adjusted.

The only lasting side effect I had was the inability to drink sodas. And to go from being a Dr. Pepper addict to... nothing!! was tough. :lol:

 

But during the first 9 months I was on Topamax I had no migraines at all. I started to get a few breakthrough headaches towards the end, but since I was on a lower dose then recommended the dr. said it might happen.

[ThatCyndiGirl]

Thank you, all! (Asta, I will PM you, too!)

 

Last night was bad. I know I've never had a migraine, but, man, I kept holding my hand over my eyes (as if looking out toward the horizon for an incoming sea vessel!) and closing my eyes. Too much light!

[anotherbrother]

I found my Neuro-Opthamologist to be really helpful. There aren't very many around but if you can find one I would highly suggest it. It certainly sounds like you are due for a follow up. Of course you may already be seeing one and in that case I hope they're helping.

 

Hope you're feeling better soon.

[Homemaker]

My husband was on this for a couple weeks due to migraines. He probably on too high of a dose, but it was awful. He seriously

looked like he was stoned and acted weird too. He couldn't remeber people's names and even called someone "stupid", which if he wasn't on that, he would of never called this person "stupid" in front of a group of people. I basically begged him to stop taking them. I did not feel comfortable at all with him taking it.

[anotherbrother]

My husband was on this for a couple weeks due to migraines. He probably on too high of a dose, but it was awful. He seriously

looked like he was stoned and acted weird too. He couldn't remeber people's names and even called someone "stupid", which if he wasn't on that, he would of never called this person "stupid" in front of a group of people. I basically begged him to stop taking them. I did not feel comfortable at all with him taking it.

 

Topomax isn't a medication that you should be on for a short period of time. Your should start off at a very small dose 25mg or less and work up in 25 mg increments on a weekly basis. It sounds like your husband wasn't administered this medication properly.

[asta]

Topomax isn't a medication that you should be on for a short period of time. Your should start off at a very small dose 25mg or less and work up in 25 mg increments on a weekly basis. It sounds like your husband wasn't administered this medication properly.

 

:iagree:

 

As I mentioned to Cyndi in my PM, Topamax actually has an extremely limited therapeutic population (which you'd never know, given the way it is advertised). It is designed to work in the temporal lobes pretty much exclusively. If a person's issues do not exist solely or at least partially there, it is not only not going to work, it is going to cause mild to severe problems for a person.

 

IME, the people who have the worst side effects, beyond those who have been mis-titrated or dosed, are those who have been unwittingly misdiagnosed. It isn't even necessarily the neurologist's fault: it can walk like a migraine, talk like a migraine, and be a duck. Migraines most often respond to Topamax. Ducks do not.

 

Topamax works beautifully for my migraine (I have a very rare kind), but not at the "recommended" dosing of 50 mg. Perhaps it is because I am comorbid for epilepsy, but it takes 300mg for it to work for me. Everyone is different. Any doctor unwilling to work with a patient for what works for them is being unreasonable IMO. And yes, I forgot how to sign my name at one point. It went away.

 

 

asta

[anotherbrother]

:iagree:

 

As I mentioned to Cyndi in my PM, Topamax actually has an extremely limited therapeutic population (which you'd never know, given the way it is advertised). It is designed to work in the temporal lobes pretty much exclusively. If a person's issues do not exist solely or at least partially there, it is not only not going to work, it is going to cause mild to severe problems for a person.

 

IME, the people who have the worst side effects, beyond those who have been mis-titrated or dosed, are those who have been unwittingly misdiagnosed. It isn't even necessarily the neurologist's fault: it can walk like a migraine, talk like a migraine, and be a duck. Migraines most often respond to Topamax. Ducks do not.

 

Topamax works beautifully for my migraine (I have a very rare kind), but not at the "recommended" dosing of 50 mg. Perhaps it is because I am comorbid for epilepsy, but it takes 300mg for it to work for me. Everyone is different. Any doctor unwilling to work with a patient for what works for them is being unreasonable IMO. And yes, I forgot how to sign my name at one point. It went away.

 

 

asta

 

 

Very well put.

 

I actually thought it was unusual that I was so successful with 50mg. I thought most people had to be on a much higher dose. I have notice that I can't always find the words that I am looking for and my spelling has gone down the drain. The spelling could be my reliance on spell check though. :001_smile:

[IdahoHomeschooler]

I recently weaned off of it, after being on it for about 1 1/2 years. I took it for migraines. My side-effects were fairly mild. I did have some of the brain-fog, but the most notable was reflux I got. I would certainly go back on it, but will try something else before I do. For me, the reflux was pretty strong and required more meds to manage. Also, I didn't get any weight loss, unfortunately.

[ThatCyndiGirl]

My neurologist is hard to get into. Case in point: Today. lol

 

He is on local commercials in this area (duh, what else would local mean, but 'in this area'?) and he treats a lot of very recent stroke patients, so I get that I am not the highest priority. I'm okay with that. (My brother has had 12 strokes. I would have hated it if he woulda' been pushed out of the way for somebody's drug question.)

 

Anyhoo....all of this makes me wonder if I should just ask him about surgery. If I could have ONE PROCEDURE and be done with it, no need for drugs...wow! That sounds wonderful!

 

Of course, the words "optic nerve fenestration" don't exactly sound like a walk in the park, nor does "shunt", but....perhaps some research and a long talk with my dr's is in order.

[anotherbrother]

My neurologist is hard to get into. Case in point: Today. lol

 

He is on local commercials in this area (duh, what else would local mean, but 'in this area'?) and he treats a lot of very recent stroke patients, so I get that I am not the highest priority. I'm okay with that. (My brother has had 12 strokes. I would have hated it if he woulda' been pushed out of the way for somebody's drug question.)

 

Anyhoo....all of this makes me wonder if I should just ask him about surgery. If I could have ONE PROCEDURE and be done with it, no need for drugs...wow! That sounds wonderful!

 

Of course, the words "optic nerve fenestration" don't exactly sound like a walk in the park, nor does "shunt", but....perhaps some research and a long talk with my dr's is in order.

 

In my earlier post I referred to an Optho-Neurologist. My doctor specializes only in eye/brain combo issues. They have all of the equipment to do the eye tests in their office. Have you ever been to one of those? I only mention this because my doctor said that he would only send me to a regular neurologist if it turned out to be regular old migraines.

[ThatCyndiGirl]

Erin, I'm gonna go see if I can find one in the OKC area. (That's where I am, btw.) My neurologist and my opthalmologist work together (on cases, not in the same office) and when I went in for my eye exam last year, just after diagnosis the eye Dr. said that my right optic nerve was almost completely hidden by all of the swelling.

 

Lately it feels like someone is poking a needle into my eye, which, I must say, I don't like one bit.

 

My dh and I joke with each other that I must have dengue fever because we would see DAILY commercials on TV during our time in Panama (four years) about how "if you have a headache behind your eyeballs see a Dr. immediately. It is probably dengue fever and it is nothing to mess around with!"

 

But, dengue fever is not as popular in Oklahoma as it was in Panama, so it's probably the intracranial hypertension. I told my brother, "I'm such a packrat that I save spinal fluid, too!" :lol:

[anotherbrother]

Erin, I'm gonna go see if I can find one in the OKC area. (That's where I am, btw.) My neurologist and my opthalmologist work together (on cases, not in the same office) and when I went in for my eye exam last year, just after diagnosis the eye Dr. said that my right optic nerve was almost completely hidden by all of the swelling.

 

Lately it feels like someone is poking a needle into my eye, which, I must say, I don't like one bit.

 

My dh and I joke with each other that I must have dengue fever because we would see DAILY commercials on TV during our time in Panama (four years) about how "if you have a headache behind your eyeballs see a Dr. immediately. It is probably dengue fever and it is nothing to mess around with!"

 

But, dengue fever is not as popular in Oklahoma as it was in Panama, so it's probably the intracranial hypertension. I told my brother, "I'm such a packrat that I save spinal fluid, too!" :lol:

 

Clearly the Topomax max my brain go fuzzy sometimes. It's Neuro-Ophthamologist. I found this one on a first hit with google.

 

McGee Dean Eye Institute: Neuro-Ophthalmology

608 Stanton L Young Boulevard

Oklahoma City, OK 73104-5065

(405) 271-1090

http://www.dmei.org/

 

I see a few other doctors listed but I think that they are all associated with the McGee Dean Eye Institute. I'm a fairly insistent person do you think your eye doctor would be willing to call in a referral for you. When my optometrist who diagnosed the problem called in my referral the Neuro-Ophthamologist got me in the next business day.

 

You may want to ask about taking Topomax and Diamox together. When taken together I believe they can magnify each others effects thereby both working better.

 

Good Luck. Keep us up to date.

[ThatCyndiGirl]

I have an appt with the Neuro-Opthalmologist!

 

It's not until mid-September, but at least I have an appt.

 

Thanks, Erin! I think we were both posting at the same time! Yep, that's where I'm going! (I PM'd you, too!)

 

And I didn't even need a referral. That was nice. I just called, gave them my insurance info and they scheduled it. I wish I would have asked this question here sooner!

[anotherbrother]

I have an appt with the Neuro-Opthalmologist!

 

It's not until mid-September, but at least I have an appt.

 

Thanks, Erin! I think we were both posting at the same time! Yep, that's where I'm going! (I PM'd you, too!)

 

And I didn't even need a referral. That was nice. I just called, gave them my insurance info and they scheduled it. I wish I would have asked this question here sooner!

 

Got it. I Pm'd you back.

[Krista in LA]

I was on a low dose for a while but could not stand the memory problems I had with it. I could be talking to someone about my dh and not be able to remember his name and have to resort to "You know, the guy I'm married to..." It was that bad for me. Now maybe if I had lost weight on it, I might have been more patient with the memory issues. :D It did make sodas taste funny too, but I could live with that.

[ThatCyndiGirl]

I just got back from the library where I saw a woman who looked SO MUCH LIKE ME that I wondered if I was looking into a mirror. Then I noticed that she was a very short Asian woman. (I am a medium height chubby Caucasian woman with red hair.)

 

:001_huh: No idea what happened there.

[asta]

You may want to ask about taking Topomax and Diamox together. When taken together I believe they can magnify each others effects thereby both working better.

 

Good Luck. Keep us up to date.

 

Actually, they don't potentiate one another; the carbonic anhydrase inhibitor action of Diamox (which is all Diamox is - a CAI) is duplicated at a MUCH smaller dose within the Topamax. What happens then is that a patient simply gets more CAI. Docs have to be careful in dosing the two of them concurrently so as not to damage a person's kidneys.

 

Does that make sense?

 

 

a

[anotherbrother]

Actually, they don't potentiate one another; the carbonic anhydrase inhibitor action of Diamox (which is all Diamox is - a CAI) is duplicated at a MUCH smaller dose within the Topamax. What happens then is that a patient simply gets more CAI. Docs have to be careful in dosing the two of them concurrently so as not to damage a person's kidneys.

 

Does that make sense?

 

 

a

 

It would probably make more sense to my husband as the medical terminology goes right over my head. At the time that all of this was going on we did do extensive research and it was a recommended/suggested possible treatment for intracranial hypertension. I am aware of the potential side effects to a person's kidneys as I already have a propensity towards kidney stones. Personally I chose not to stay on the Diamox because I do not have vision issues and I believe it's primarily prescribed to reduce swelling in the optic nerve. It did not reduce my swelling at all. I am on the Topomax because it has totally stopped the migraines that I was having.

[Negin]

Cyndi, hope you find some relief fast. Been thinking of you :grouphug:.

 

I just got back from the library where I saw a woman who looked SO MUCH LIKE ME that I wondered if I was looking into a mirror. Then I noticed that she was a very short Asian woman. (I am a medium height chubby Caucasian woman with red hair.)

:001_huh: No idea what happened there.

:lol: :lol: :lol:

 

Reminds me the other evening, a group of us met a blond who looked exactly like my sister. Everyone thought so. It was WEIRD. :001_huh: :lol: My sister's a brunette like me.

Told my sister about it later. She couldn't stop laughing.

[Ottakee]

The Diamox is no longer working and the headaches are getting horribly worse, even after doubling the Diamox dose.

 

Has anyone here taken Topamax? I'm getting desperate.

 

We did not do Topomax here but Lamictal has been very helpful for my daughter with migraines. Newer seizure med but very few to no side effects.