I've had migraines since I was very young. I've been taking 200mg of topamax twice a day since the beginning of May and prior to that it was 200 and 300mg and before that it was 300 mg twice a day since last summer. I had brain surgery for a non-cancerous menginoma in March of 2007 and went right back to work after 6 weeks of rest. I was under alot of stress due to closing my business. Since October I've been working at a new job, 3 days a week and am having a problem just working those days due to my migraines, they are severe and I'm also having problems focusing on my work and just getting things done in a timely manner. I'm even having a problem reading lines of text - sometimes the text flips on me and I lose track of what I'm doing. I have trouble following recipes at home and I love to bake. I'm worried that I'm losing my mind. The neurologist has had an EEG and an MRI done and all have come back ok. I see him again in July - in the meantime my boss wants me to apply for disablilty. I've been home with a migraine yesterday and today - my head feels like its going to explode. I get to the point where I don't know what to take to relieve it because if I take one thing too often, I get a rebound, if I take imitrex plus ibuprofen - I'm out for a few hours, then I wake up achy and hungover - it just seems like I'm never without pain.
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Q: Do I have early onset dementia or is it the topomax that I'm taking?
Hi marycarr
Seeing as we are not medical professionals here we're unable to diagnose people.
The best thing to do in my mind, if you are concerned about early onset dementia, or topamax with a history of brain surgery, is to have a serious discussion about it with your neurologist or neurosurgeon.
Topamax is not the best Migraine preventive medication out there, just the one we all hear a lot about because it is heavily marketed to patients and doctors alike. There are many other options, Eileen gave you the link to look into.
Good luck
Nancy
Hi Mary!
It very well could be the Topamax that is causing this. Have you ever tried other preventive medications for your migraine treatment? Don't feel cornered in my just topamax! There are over 100 drugs being used for migraine prevention. You can talk to your doctor about trying something new.
As far as the Imitrex - yes, if you take it more then three times a week you would be prone to rebound headaches. Do you also have a rescue medication to switch to after you've maxed out your Imitrex?
I would really talk to your doctor about the possible side effects you are having. It could be worked out by backing down or switching off the Topamax.
If your doctor is unwilling to try something else, it may be time for a new doctor.
Good Luck!!
Hi Mary - I quit Topamax last summer, when it became apparent that I was experiencing long "spaces" in my conversation while I searched for words, became confused, or wandered off the topic entirely. My neurologist who specializes in migraine agreed that we should try another preventative medication, and within three weeks, I felt like a new person! I lost the stress of feeling like I was "losing it," but still was experiencing up to 3 migraines a week. I use Maxalt or Relpax to stop migraines when they come, but just a few weeks ago my doctor added Neurontin, and this has added an additional level of pain relief and migraine control for me. I had to quit working last fall due to the interruptions that my migraine disease is causing me, as I experience visual, auditory and mild intellectual disruption with every migraine, which resolves now when the aftermath passes. Don't give up, but be assertive with your doctor, or seek another who really understands the combined issues you are dealing with. You may need to consider taking a medical leave to focus on your health, as this takes time, serious stress management, and a chance to focus on prioritizing your health. Many have experienced the side effect you are having from Topomax, but don't just quit taking it - work with your doctor, since you will have to either taper down on a schedule or switch to another migraine prevention medication. Hang in there - you are not alone. Lynne
Hi Mary, I'm certainly not a doctor, but I'm on 125 mg of Topamax, and I've had similar experiences to the ones you describe. I will "lose" a word...or break off a sentance in the middle. I'm much more forgetful than I was. I've actually got little "memory tricks" so I don't lose keys, etc. I read up on Topamax when I first got it, and this is definitely a side effect...
I should mention that I'm a 61 year old woman who's father just died of Alzheimer's Disease, so every time I forget a word or lose my keys, I get really spooked!
Judy
I appreciate the comments and suggestions. In the meantime I have contacted my doctor and he has decided to try me on depakote er and is going to wean me off the topamax and hopefully this will help the memory/focusing problems and also help with the frequency of the migraines. This all takes time though and alot of patience which I have to keep reminding myself and the rest of my family every time they say "why can't they just give you something that will get rid of those headaches once and for all!" My husband and son (he's 27 now) and most of my friends understand that it's a disease but I just don't seem to be able to convince the rest of my husband's family of that.
By the way, this website has been a real blessing for me - this week has been just horrible and I'm glad I found it!
Hi again Mary!
I'm glad you discussed this with your doctor and are trying something else! I hope the Depakote works well for you!
As far as others in your life "not getting it" see Teri's wonderful articles on the topic: Migraine and Headache Education: for those who don't "get it". I've given many copies of the friends and family letter!!!
Good luck Mary!!!!
Feel free to visit us on the forum side of the site too!
I am so glad that I found your question! I felt like a complete crazy person on Topamax - and it didn't do anything to prevent my migraines. After being on the drug for 6 months I felt like I didn't know who I was anymore. I couldn't tell if the paranoia, anxiety and depression had always been inside of me or whether it was from the medication. It was definitely the medication! 300 mg - wow, I was only on 100. I am in the process of tapering off and I feel much better.
I also felt really slow on it. I would search for words in the middle of sentences and I have always been an articulate person. I slurred and mispronounced words while talking. Topamax is called dopamax by a lot of people now.
Hi,
When I was on Topomax, first I noticed that my feet felt like they were in an ant bed, stinging. I thought it was from a herniated disc. Then I started thinking funny and forgetting things. Embarrased, I kept this to myself as I mulled the posibility of Altzheimers, and didn't want anyone to know. The memory got so bad that I frorgot how to sign a check! Things that I should have known, I didn't anymore. By then ignorance was bliss. My best friend, flew down to visit, and after spending little time with me, informed my husband that something was very wrong. She took me to the Dr.s and made notes of all that had been happing. The Dr. asked why I didn't seek him out first? You see, I was so far gone that I didn't even know I was gone. He immediatly weaned me off of the Topomax. While it is true that it got rid of my migrains, it took my mind also. "Ignorance is NOT bliss!" It was frightening. I did gain back all of the weight that I loss as an effect of indigestion from it. However, that was over 3 yr.s ago and I still am not totally up to parr on my memory. After talking to a neurologist, I may never get it all back. One thing positive about this whole nightmare, is that I have a deep compassion for those who are going thru Altzheimers and the fear and terror that they feel until they are totally engulfed by this disease. I will always know, "The Mind is a terrible thing to waste." The irony is, I was a nurse! Tis can happen to anyone.
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