Epilepsy Community

Hello Kathy,

Well, I ain't on Topamax or Vimpat, but, know full well how bad side effects of Topamax can be from previous posters. It has earned it's nickname: Dopamax. My Daughter is on Topamax at this time. She started it about 3 mths ago & after 6 weeks her side effect was gone. You can use the Drug/Supplement Tab (in blue) above to see if anyone left reviews on either drug. Plus learn the side effects of either. Vimpat is new & not too many ppl have tried it yet. But, honestly, it really doesn't matter. Everyone's experiences on AED's (anti-epilepsy Drugs) ain't always the same. Especially on combination of AED's. Plus, What works for one, may not work for another.

Since you changed doses, hopefully, w/in 6 weeks, the side effects you are experiencing will diminish or disappear.

You can, also, use Search This Exchange tool to read past comments on either drug. I do hope the decrease works for you. But, if you continue to have seizures, you will have to consider another med or 'alternative' treatment. A great way to ensure your meds work properly is to eat nutritiously.

Do you keep a Journal? More Info as to what to include under Tips.

Please, don't beat yourself up over something you have no control of. It just adds to any Stress, which ain't Good. You mentioned your seizures are now once a mth. Have you ever heard of Catamenial seizures? (Seizures caused by Hormone Imbalances) Emma Posted excellent info under Resources.

Frustrated? Well, talk w/ us some More. Venting w/ ppl who understand, really does help. HUGS

Love Candi

Kathy,

Topamax was one of the first Epilepsy drugs my doctor put me on when I was in my late teens.... For me, the side effects always peaked when I increased the dose but tended to subside within a week. But the drug didn't work very well for me at the time.... However, a couple years ago when my seizures were very bad (So, about 8 years later) my doctor put me back on Topamax in combination with another Epilepsy medication. The combination DID work to control my seizure, but the side effects of Topamax were so terrible that I couldn't even function! I had no balance or coordination and couldn't even walk unaided! My head was constantly spinning and I was always in a haze of confusion where I could barely form thoughts, much less sentences. The vision problems and tingling in my hands and feet were the most benign of the side effects I experienced when I was put back on that drug in a higher dose a couple years ago. I am VERY impressed that you've been able to tolerate it for so many years! But I found that the side effects, for me, were MUCH worse when the Topamax was used in combination with another Epilepsy medication - because by itself, the side effects were at least tolerable and I could function day-to-day. If lowering the dose does not help with your side effects, talk to your neurologist and see if there are any drugs that are similar to Topamax in the way they work - it would be easier to transition you to a similar drug than a completely different and new one! That's what I was able to do and it worked out much better without too many breakthrough seizures at the time. Good Luck, Kathy!

Hi Candi,

I know Vimpat is new, and not many people have tried it. I know many have been on Topamax. Not everyone reacts the same to AEDs but I was sending out a feeler for anyone who may have been on Topamax for a long time that may have experienced what I am going through. For many years I could deal with the side effects. They were bad to begin with, but they reached a plateau and I just dealt. A combination of AEDs can cause adverse reactions at times. I have been through many, many drugs. Some of them didn't even have names when I tried them.LOL I know many AEDs that cause side effects of Topamax, usually not seen, to show up when taken in combination. (because I took them).

I kept a journal for years, and still keep seizure diaries. That is how we were able to determine the type of seizures I was having (mainly complex partial), and when they were occurring. 30 years ago they were all through the month, for the past 15 year they have been Catamenial.

I'll see what happens after lowering my dose, and keeping it there for a while. I haven't been at 200mg per day since I can remember.

Thanks for caring, and being a sounding board,
Kathy

Hi Elizabeth,

Topamax was one of the last AEDs I was put on. I can't remember if it was just before or after, I had my VNS implanted. That was in 2001. I think it was after, because I was having increased seizure activity, and had two Statis Seizures. The addition of the Topamax leveled my seizures to 3 to 5 a month, plus the side effects. There were many AEDs that my doctor tried adding. Each time they caused side effects of Topamax that I had never experienced to show up, and make the others worse. I am hoping since my new doctor is lowering my dosage he is considering weaning me off, and starting me on something new. That is what he did with the Dilantin. I am now on Vimpat which is a new generation drug that works very similar to Dilantin. I'm just glad he is lowering it! I'll know more in a few weeks, and after they set up my MRI.

Thanks for sharing and caring,
Kathy

Hello Kathy,

Thank You for replying. Sounds like you have been around the block a few times, too.

I talked w/ my daughter last nite. She May respond to your post, also. DRS are lowering her Topamax, too. I think she said she was down to 50 & holding. A dizzy spell the other day, but, other then that she is hanging in there. Which is surprising considering she has been thru a Lot lately. She has been on the DR/med Merrygoround for over 10 yrs & we are hoping this med will continue to work for her. I told her you just need to know you ain't alone. And You aren't!

My Sister's Homeopathic MD Figured out her's were Catamenial, too. For a long time she didn't tell him about her Epilepsy. About 2 yrs ago Depression hit Hard. Suicidal thoughts all day, every day. So she told him her 'secret'. She was/is on a Low Carb, High protein diet already, for diabetes. But, after his findings, he threw in some Vitamin D & progesterone cream & she has been seizure free for the past 2 yrs. After 50 yrs of seizures.

I do hope you will stick around, keep us updated & talk w/ us & others who need support. And of course I Care. I may not be able to walk in your shoes, but, I can walk along side of you. I, also, like knowing I'm not the Only One who does their 'homework'. And has Experienced as much/ More, then me.

Love Candi

kathy,

I was on Topamax for 5 years and had similar symptoms. What I "remember" most was not being able to say what i wanted at the moment i wanted to. Also, people would always fill in your sentences as if they were being helpful but I not really. My neurologist had me see a Neuropsychologist to see if my symptoms were cognitive related. It helpful to find out that it was indeed the medicine and not me. Now I am on Zonegran and the VNS.

Good luck,

Megan

Thank you very much Megan. I have known the Topamax caused these types of side effects. My doctor told me years ago it was giving me what I call "bad brain to mouth coordination". I've kind of learned to deal with that over the years. The breaking point was my husband finding me staring at a shirt, not being able to figure out how to put it on! It was just an over the head halter that ties in the back, but the angles blew me away. It wasn't the first time, but it was the first time it ever happened in front of him so I could really explain it so he could understand. He really understood what I meant when I said I was having a bad day because of my meds. Now he gets it! Finally!!!
My doctor cut my Topamax back again today. I'm down to 100mg once a day now. Hopefully my head will start to clear soon.

Thanks,

Kathy

Hi Kathy,

Glad the DR was willing to help by lowering your med. It Mite help your "bad brain to mouth coordination'. But, my hopes are that it will continue to control your seizures. Jeanna's Doc told her she Has to increase dose at first sign of seizure activity. My prayers are w/ both of you! HUGS!

BTW: Did you send me an e-mail? Kathy P.......?

Love Candi

Hi Candi,

I hope so also. I had an MRI done yesterday also to rule out other issues. I'm hoping between the Vimpat, VNS and lower Topamax it will keep my seizures where they are now. If not I already talked with my doctor about finding another drug. I can't take the Topamax any longer. It may well be the interaction caused by adding the Vimpat, but it has worked the best of any AED I have ever been on. Since adding it I am down to 1 seizure a month! The only thing that will completely remove my chance of seizures is to remove the scar tissue. I can live with 1 or 2 siezures, but I can't live like a zombie anymore.

Yes, I sent the email. Ooops... I sent you a reply. We emailed a lot when I was having problems with my condo association, about my dog Bailey.

Thanks,
Kathy

Hi Kathy,

Well, then I will keep your addy and FWD my 'funnies' as I get them . I didn't want to open Your email, as it came in a file form & I wasn't sure if it was You or not.

I totally understand your need to want a 'better quality of Life'. Zombie world? I lived in it for over 10 yrs, B4 being introduced to my Pheno's. I am no longer a Zombie, but, mild depression Sucks, too. But, the only other med that worked for me, was recalled 3 mths after I was on it. Bone Cancer side effects that have now been proven to be 'rare'. Still considering asking my Neuro about it. But, am scared of losing seizure control, again.

Someday, maybe, you will work up the courage to have the scar tissue removed. Laser surgery is gettin More & More advanced. I can see the future brightening as DRS learn & practice. Make sense?

Love Candi

Hi Candy,

Thanks for keeping my addy. I'm sorry the med that was working for you was recalled. I agree if the side effect is rare I would consider asking him about it. Rare means many different things. Most times I have found rare means 1 in many thousands, or more.

I don't think I will ever have the surgery. It has a 70 - 90 percent chance of stopping my seizures, but it is also very expensive. I'm not so much affraid of the surgery itself. It is what I have to do to prepare for the surgery. I would have to come off all of my medications, and be monitored 24hrs a day in hospital while they plot the brain wave patterns of my seizures. They could possibly need to see atleast two or three seizures. That is where my greatest fear lay. I had two status seizures in 4 years. Both times I spent a week in neuro ICU, in a drug induced coma for the first 2 days. After I started coming around, the next few days halucinating, and having terrible anxiety attacks. I would wake up and not be able to move, or come completely awake. I just started screaming because I thought was not going to come out of it. I wrote letters to my family about how much I loved them because I knew I was not going home. I was going to be trapped forever. It was worse than I can explain, and the second one was worse. When I came home I kept having panic attacks for months, and thinking the same thoughts.
If I have to come off of my meds I am petrified I'll have another one. I can't live through another Status seizure. I don't think my heart could take it, much less my mind.
The future is getting brighter. New and better meds are coming out everyday. New technology is being used to lessen seizures, or cure others of them all the time.

Take care,
Kathy

Hi Kathy,

You are Welcome. My list of Contacts/Friends Blooms again.

I know what ya mean about the Status, hospital stay. My Daughter has been in the EMU twice, for brain mapping. Her seizure activity kept them quite Busy. But, if Status Was to occur, I think I would rather it happen around the DRS.

New tech, new meds are Great, Maybe. But, I'm still leaning toward the 'old' treatments. If HomeopathicMD's ever get included on Insurance (which my Sis says is a Good Possibility, in the near future) I think that is the route I will go.

Love Candi

I know just how you feel. I felt like I was reading my own personal blog. I thought I was the only one out there as well. It is so frustrating when you are trying to talk to some one and you can't get out what you are trying to say exspecially when it is your boss. I have lost my job twice. I been told over and over again the reason I have been laid off twice from two different companies wasn't me but it is hard not to think it isn't me when I know I wasn't able to perform to my fullest because of the topamax. My Dr. is now going to try me out on just VIMPAT so we will see if I can finally get my words out. He explain to me it will take time to develop back my sort term memor0y. So therefore, it will not happen over night but at least this my take care of the seizures and my memory. I am nerves because the topamax has kept me seizure free for over 5 years. I really don't want to have a seizure anytime soon. I'm really scared.

Hello Flower,

Unfortunately, Topamax has been knick-named Dopamax for a reason. I know going back on the med merrygoround is scary, but, you Won't know, unless you Try. I had seizure control for over 5 yrs, at one point & decided I had had Enough of the Side effects, too. Insisted on a new Drug. It Worked. And I was Happy & Energized. It felt like I was Me Again. B4 Epilepsy. For at least 3 mths anyway. Then the med was recalled due to new research findings. So I had to go back to Phenobarbital. And Deal w/ the Naps, mood swings, vitamin deficiencies, etc. I would really like to try the med again. Now that they have dtermined side effect is Rare.

Suggestion: Keep a Journal! See under Tips. Talk w/ your pharmacist about over the counter meds that are good to take w/ this med. Eat Well Balanced meals & don't change soap, laundry or other daily product brands.

Have you heard of the Epilepsy Bill of Rights? If you Suspect job discrimination, please seek help. The epilepsyfoundation.org site has more Info & the Jeanne Carpenter Fund for people who need lawyer assistance.

Stay Strong! You can do this. One Day at a Time. Hugs!

Love Candi