TOPAMAX (topiramate)

Hi there… out with the old (Lamictal) due to serious side effects (cluster migraines and major sleep disturbances, as well as simply no “emotional” positives to note) and in with the new (Topamax)…

Does anyone have any experiences (good OR bad) they can share with me regarding Topamax? I have never even heard of it until today.

Thank you!

it just so happens…ehum!!! standing taller than tall and holding in my rather fluffy tummy, I just quit taking it in for Zonisamide. Topoxax~ you will loose about 10 percent of your weight without trying I lost more. It doesn’t seem to cause any feelings of jitteryness or dry mouth only that my cluster headaches cut back from 4-5 days a week 3 -4 times per week and then it wore off But it lasted 2-3 years no bad side effects I was aware of…
Zonisamide does the same thing w/o weigiht loss or less , and supose to be newer and work better blah blah blah. No side effects I was aware of and on it at present.
River

ppppssssssssstttttttttttttttt… did you say weight LOSS is a side effect of this medication? Can you write that again for me, because I think my eyes do deceive me?

The only payoff for having migraines, hee hee. Yes you will LOSE about 10% if your total body weight. But I lost more. Does it thrill ya.? You’ll loose weight at first then level off. I didnt’ gain my back .
so there is an up side to meds…grin

caught this on one of my currently “rare” visits to the discussion.

i looked this one up when my pdoc presented as an option in June. the highlights i can remember:

Sometimes called “dopomax” (dope-a-max) because it often causes coginitive disturbance, probably the worse of all anti-convulsants.

sometimes called the “supermodel” drug because it can make you “skinny and stupid.” i don’t recall any other SEs.

For more info you can try crazymeds but something has changed over there. They changed servers about a week ago. I can get to it through AOL, but not directly through IE. Ifk you can get there, the drun info section is available, the discussions are not.

lotsa luck,
c.

Okay, now darn it, I left earlier feeling enthused, but now I know I will just be a bit thinner and dumb as a rock… I don’t really think that’s the most helpful route I could take! Lord - what next? Wait, don’t answer that, I’m not ready to hear it!!!

:wink: Thanks for all of the information - it’s good to hear both sides of the issue :slight_smile:

Hey I am not dumb as a rock, give it a go, or not…

Just joking, well… I am not joking, i am not a rock but I do have sort term memory loss but more from other meds.

I got the disnomia or misnomia it’s the word on the tip of the tongue thing, I have to play charades. I can see it describe but can’t name it.

Go figure…

That's true, you are NOT dumb or a ROCK... so I am in agreement :)

I have significant memory loss already - some due to medications and some due to significant traumas I have experienced ("the only way to keep you halfway sane is to forget any of this ever occurred" kind of memory loss)... I would be concerned if Topamax made this even worse, because the memory loss is quite noticeable and detrimental already... however, I have had far WORSE side effects that weight and memory loss... on the positive side, what if I forgot I was depressed and anxious... now there's a side effect I CAN LIVE WITH ;)

I've got to give it a go... the psychiatrist says he thinks this could help and is very concerned about my migraines (as am I, and my family members)... and if I could have a few less headaches, even just a few less, seriously, that almost makes it worthwhile there... though, I would hope for more positive results than just that.

Here's to hoping... and I'll surely accept, and appreciate, any well wishes, or prayers, or any other positive help, along the way :)

P.S. - River, is this what you meant above? (I had never heard the word previously)... Dysnomia

A marked difficulty in remembering names or recalling words needed for oral or written language.

What River describes is exactly it. One of the others is to know exactly what the right word is – but the wrong on pops out of your mouth anyway. But i’ve been having both of those on Lamictal – like i read on crazymeds --all anti-convulsants make you stupid to some extent.

For me, the wrong word will also “pop” out when i’m writing on the pc. I will be clearly thinking the word i want, will go ahead with the typing, look up, and somehow a totally out-of-place word will be staring back at me. Not just a typo, not a word that is close in meaning or pronunciation, but a totally different word. Once it took me 4 tries until i got it right!

But, as always YMMV

and right now, for me it’s a small price to pay if i can get through the next few months. But if i get a job as a Technical Writer, Proofreader or Editor, which is what i’ll be looking for, this could be a major hindrence . . .

ain’t life just the damnedest thing?

and that’s all folks (for today)

peace,
c

I can happily tell you that I haven’t had one negative with that medication, at all.

I hope your doctor has you taking Topamax at bedtime because it will make you drowsy. By the way, I take it, am an LSW and going to school for my Master’s degree, so I have to be sharp, so maybe the “dopey” applies to taking a strong dose of it, I have never been dopey, unless I was drinking which was many years ago, but not due to medication, lol~~~! I don’t agree with the statement that all anti-convulsants make you stupid to some degree. That is not correct. I certainly am not stupid. It is also prescrible for relief of migraines. Good Luck to you, I am sure that you will be fine, Punky. Karen

That is GREAT news! No negatives - I’ll take THAT with a side order of weight loss ANY DAY OF THE WEEK :slight_smile:

And I thought I had problems! hey dear buds, You all have my prayers on a daily basis for Complete Wellness. I figured that request covered the 'board". Punky, I,m still on 25mgs of lamictal so I haven’t turned into a rock yet. I hope I don,t get headaches or I,ll be off this stuff in a shot.My love to my two other buds,with hopes that you keep up this discussion. You are educating me on pharmacology. XOX. I just found out there is a rare surgery for my hip bursitis. They can actually remove the “bursa” without harm to the joint to relieve pain.The steroid injections had no lasting effect, so I,m going to an orthopedic surgeon soon to check it out. Love marjie

Hmmm… I just took my first Topamax a couple of hours ago and I’m not thin or dumb (no matter what anyone says!) or a rock… does this stuff really work???

Okay, I’m jumping the gun, but I get to do that after starting on #19 :slight_smile:

You know, the bottle just says “take one 25 mg tablet two times per day”… does anyone have experiences to share WHEN the best times might be to take them? I just took one yesterday when I filled the script, and the other last night… and now this morning when I got up… I’m really not sure which times might be best… thanks so much for helping me on this, I truly appreciate it!!! :slight_smile:

You’re right kiki, and i never meant to imply the side effects i mentioned ALWAYS apply to EVERYONE who takes topamax. In fact, in my first post on the topic i actually wrote:

Sometimes called “dopomax” (dope-a-max) because it OFTEN causes coginitive disturbance, probably the worse of all anti-convulsants. (from http://www.crazymeds.org/topamax.html)

sometimes called the “supermodel” drug because it CAN make you “skinny and stupid.” (from http://www.crazymeds.org/topamax.html

In my second post i wrote: “But, as always YMMV.” However, i certainly should have indicated that anti-pschotics HAVE THE POTENTIAL to make you stupid to some extent.

I never meant “stupid” to be taken to mean “ stupid” as in Dopey the dwarf stupid. More properly, i should have said “experience some Cognitive-related dysfunction”

WebMD lists these possible side effects: Weakness, tiredness, drowsiness, dizziness, confusion, difficulty concentrating, tingling of the hands/feet, loss of appetite, diarrhea, impotence, and weight loss may occur. If any of these symptoms persist or worsen, notify your doctor promptly.

From the official PI sheet issued by ORTHO-McNEIL NEUROLOGICS, INC, the manufacturers of Topomax (http://www.topamax.com/topamax/assets/topamax.pdf):

“Cognitive/Neuropsychiatric Adverse Events
Adults: Adverse events most often associated with the use of TOPAMAX® were related to the central nervous system and were observed in both the epilepsy and migraine populations**. In adults, the most frequent of these can be classified into three general categories: 1) Cognitive-related dysfunction (e.g., confusion, psychomotor slowing, difficulty with concentration/attention, difficulty with memory, speech or language problems, particularly word-finding difficulties); 2) Psychiatric/behavioral disturbances (e.g. depression or mood problems); and 3) Somnolence or fatigue.

Cognitive-Related Dysfunction : The majority of cognitive-related adverse events were mild to moderate in severity, and they frequently occurred”

** NOTE: The above info specifically mentions only epilepsy and migraine, because those are the FDA “approved” uses for Topamax. However, many meds are used “off label” because research shows they are effective for other uses.

If “off-label” – or anything else – concerns you, always talk to your doctor. Don’t rely on information from a website of discussion board. I daresay the vast majority of us are NOT doctors.

i hope this clears up any misconceptions relative to my posts on Topamax.

peace, c.

I always take each person's posts as applying to things they personally have read, heard, or experienced about the medication about which I am asking... I never expect that any poster here is saying it's definitely going to happen to me and that's it ;) so no worries :))))))))))) I hope everyone else feels approximately the same as I do about this topic.

I also use my sense of humor A LOT to get through life, and I find this the easiest route :)

Thanks, See, for educating me - you have a lot of avenues of information, and I surely appreciate your information, as well as everyone else's :)

I am going to try different times, I guess, to take this medication as the pharmacist directions don't give a clue, nor do I recall the psychiatrist saying anything specific. 

Hey Punk,
If the topomax isn’t your cup of tea try Zonisamide. No side effects
A newer drug??? I think.
My forgetfulness was only a problem at work, it’s like pretty casual
I didn’t even realize how much it affected me until I started really paying attention.
The words aren’t gone forever just till you don’t think of them and then
they leap into your mind like blam! clear as a bell.
Migraines alter your brain slightly I was told.
I have horrible ones so frequently and cluster headaches too.
I find everything a triger. YIKes.

Thanks River, I’ll keep that Z-one in mind (I’ve already forgotten what’s it called)… I’m only on day two, and dose three, of Topamax, so I can’t give up or in yet… but I’ll let you know :slight_smile: I appreciate the information, advice, and support for sure :slight_smile:

The right side of everyone’s conversation is cut off—for some reason, but if you are taking 25mg. once a day, that is a very low dose, so maybe you don’t have to take it at bedtime. I take 200mg. at bedtime, because it makes me very drowsy.