Heya to all

[Miss M]

Hi everyone. First time here. I was diagnosed with a brain tumour in June this year in the right frontal lobe which had grown into my brain and was putting pressure on so i began to have seizures. Had surgery to remove tumour, however the scarring has left me with epilepsy / seizures.

I was first put on Kepra, that caused me to have very agrovated mood swings. I was then changed to Lamictal which worked great for not only seizures but my depression, anxiety and libido as well. However, after a few months on it i have gotten 'the rash' and side effects i was warned about.

Today i seen my neuro again and he has changed me to 'Topamax', i am starting it tonight 25mg twice daily.

I have read all the side effects and am hoping this drug works for me as it will also help with my migraines and weight gain.

Anyway it will be great to learn all about my new adventure in the world of epilepsy as an adult - my disabled daughter who cant speak has it but i could never understand the effects of drugs or side effects.

Hope to hear from anyone with any info on Topamax.

Cheers.

 

[epileric]

Welcome MM

Good luck with topomax. Everyone reacts differently to different drugs but I'm sure there's a lot of people here on (or that were on) topomax. I know I've tried it but I've tried so many that I don't remember which one that was.

Make yourself at home, check out the different rooms & see what we got. You can even do a search for topomax (or anything for that matter) with the "search" option at the top of the page.

One thing that is recommended is to keep a diary of when you sleep, eat, take your meds, when you're stressed & have seizures. It's a great way to track what might trigger a seizure or even increase the odds of you having one.

 

[RobinN]

Welcome to CWE Miss M
I have had no experience with topomax but my daughter tried 4 others. We decided to go med free and use nutrition to control her seizures. It is working far better than any drug she tried. My daughter had an abnormality on her brain, no scaring, but it was always pointed out that was the reason she was having seizures. My reply was she was fine for 14 yrs, to that they have no answer.

There is a lot of research being done, that the brain can change itself, due to its plasticity. You might do some research on this to find ways to strenghten the parts of your brain that are not injured. Just a thought.

 

[Nakamova]

Welcome Miss M!

Feel free to share your experience with the Topomax as you adjust -- let us know how it works for you. It's a good idea to keep a journal tracking seizures, meds, doses, side effects, along with things like diet, sleep, exercise, hormones. That way you can potentially eliminate any triggers that are affecting your migraines and/or your seizures. If you're not already, you might want to consider taking a B Vitamin supplement and magnesium, to help with the migraines and overall brain health.

Best,
Nakamova

 

[Miss M]

First night on topamax

Hi again.

After my first dose i felt extremelly dopey (i take 8 other meds for Dep and Anx and APyshcs) with the whole combination i was asleep in seconds. However i was also up around 12 times through the night to go pee and it was urgent. Anyone else have this happen? It was very annoying as i was very unsteady on my feet and had to move very quickly.

Other than that i feel like i have been hit by a truck and have just taken my second dose, one at night one in the morning. I am wondering how i am going to feel through the day today.

Can anyone give me a rough estimate about how long it takes to get into your system and level out?

Thanks for the advice, i am going to need a hand to hold through this, i am new to the world of Epilepsy. Have had depression, anxiety, PTSD, pyshcotic symtems, and several other damn labels forever, now i just have to add this one on.

Hope to talk soon.

Miss M.

 

[Nakamova]

What will your final dose be? It should take about 12 weeks to get up to 200mg (100mg twice a day). At each increase you may find some side effects as your body adjusts to the Topomax and the other meds you are taking. Since the other meds you are taking may also depress the central nervous system then it's not surprising that you feel like you've been hit with a truck! You're doctor should have warned you about that potential side effect. As for the need to pee -- that can be a side effect of Topomax, although it's a less common one. It may go away once it levels off. Unfortunately everyone has a different experience with AEDs, so it's hard to predict how yours will go. It's a good idea to take notes of all the side effects you're experiencing so you can keep tabs on them. If any of them persist or become unbearable then call your doctor to re-evaulate -- it may be worth trying a different med instead.

 

[Miss M]

Dose

Hi.

My starting out dose is 25mg x 2. I can cope with the bus feeling as most of my meds started out that way but the interuptions all through the night are not good for my mood at all due to all the other meds i am on.

I shall start a diary today and try to give it some time to work.

The other benifits i am hoping for are the migraines and weight loss. I already this morning cant even think about eating breakfast which goes against one of my anti dep drugs which "makes you eat sugar from the bag" so hopefully they will even each other out.

BUT at the end of the day this is about the seizures so i will concentrate on those.

Great to have someone to talk too, i have been alone with this since June in no mans land.

Miss M.

 

[Nakamova]

It's a bit of a Catch-22: With Topomax you want to make sure you drink plenty of water -- which doesn't help with trying to sleep through the night! I vaguely remember having the peeing problem when I first went on Lamictal, but it went away, so here's hoping the same happens for you.

 

[TempusFugit]

Hello Miss M The advice and information you can obtain on this forum is wonderful and they have certainly helped me step out of 'no-mans land' and back into the land of the living (and surviving)

I do hope that you are feeling better soon

 

[Cint]

Hi Miss M,

I also take Topomax, 100 mgs. 2x a day, along with Keppra. Initially, I started slowly, I believe it was 25 mgs. 2 x a day increasing to 100 mgs. by the end of several weeks. It's also called dopamax, cause it can make you really feel dopey at first, but that should subside after you get to the full dosage. It is also used for bi-polar disorder. I lost 15 lbs. after being on it after about 4 months. I don't remember it helping with migraines.
I also have to get up in the night to pee, but I also have diabetes and do insulin, so I don't know if it is from that or the other meds. Btw, I also had brain surgery, a left temporal lobectomy, which made the seizures worse.

 

[Bernard]

Hi Miss M, welcome to the forum. :hello:

My wife could not tolerate Topomax at all. I hope you have a better experience with it!

 

[Miss M]

HI everyone.

I am nearly due for my third dose of Topamax and i am really really scared. I have been to hell and back today. I feel like i have been poisoned. Sliding in and out of sleep, i feel like i have had 50 bad dreams and have no reality of what was real and what wasnt.

I am shaking and jerky and just to type is taking me three or four times to get it right. Can strand the light or concentrate on anything, everything seems huge.

I dont want to take another dose. i waant to just wait for my gp to open on monday, its saturday here. i am too scared to ring my neuro incase i am a neusience to him as im sure he will say i need to wait longer.

people im really scared and in a horrible way from only 2 doses.

sorry to be so dramatic but thats how i feel. the lamictial was great, no side effects at all. only that i got the dangerous rash and sore throat so they had to take me off it.

no sure what to do.

 

[epileric]

What you described sounds like how I felt when on Keppra.

My advice would be to try to make it through the weekend. Sometimes side-effects subside as the body gets used to new medications. If there's no change after that definitely tell your GP or neurologist.

 

[Miss M]

Time

Yeh i thought so as well. Do you know how long aprrox it takes for the drugs to get into and saturate your system? for them to start to fade away?

To think that my disabled daughter who couldnt speak was on this for years, how awful the start must have been for her, i remember her zoned out and now i know why!! i wasnt ep back then but now i really feel for her.

Miss M.

 

[epileric]

I don't let it go longer than a few of days anymore. A week at the longest.

I spent 6 months too zoned out on Keppra & now I"m frustrated at myself for wasting that time of my life. I'd still wait a little while in case the side-effects lessen & you do get some benefit from the topomax. It's always a matter of balancing the benefit with the cost of the side-effects.

 

[Miss M]

How long it too long?

I have in the past had the same problems with all of the anti depressents i have tried, i cant take any of them and it took us almost 5 years to find one that i could, but i did have the same war of side effects for a few weeks that i had to get through and now i have been on it for years and wouldnt go off it. So, with that in mind i will do my best to stay on and try to ride it through until the end of the week.

I am lucky enough that i dont have to worry about work or the kids as they are grown up and i have only myself to look after.

Am i posting in the right place or is the a section for meds that i am supposed to be in?

Thanks so much for talking to me, i really do feel alone with this as i got it for my 40th birthday out for dinner have a a seizure present!!! Applying it to my daughter was one thing but now the shift to myself seems much more different.

Miss M.

 

[epileric]

What I try to do when struggling through the side-effects is take my meds before bed (I do that anyway) and try to take them with food in hopes that it's metabolized faster.

you're continuing the thread you used to introduce yourself, no problem posting here. Besides we don't have a special place to talk about meds (though the library would be the place to post info on them) but we do have a "padded room" which is for going to vent your anger & stresses.

Also, it is sort of cool since most parents have no clue what their epileptic kids are really going through. You know 1st hand.

 

[Meetz1064]

Hi there

Miss M. My name is Meetz, and I'm very pleased to make your acquaintance.

I am on Topomax at the moment (one of 4 AEDs I'm taking.) I use it for both seizure control AND migraine control, too.

I did go through a rough time at first with adjusting to it. I basically slept for almost 2 weeks. It made for a rough time at work, but there wasn't much that could be done about it....

I'm at 100 mg morning and evening. I haven't gotten the nice side effect of weight loss from Topomax, I've gotten that issue going on from something else...

You will find that journalling, as was previously suggested is one of the best things to do to help keep track of side effects and such. It's also great to hep keep track of your seizures, and to possibly find your triggers if you don't know what they are. I have a great list of what to put in a journal for that (seizure and trigger tracking) if you'd like it.

I wish you luck, and welcome to CWE! I'm sure that you'll find you like it here. Many great people to make friends with, lots of nooks and crannies, and tons of information to find.

Take care!!

Meetz
:rock:

 

[Miss M]

Update

I just lost my breath, not a panic attack, but like i had run a marathon. I rang the on-call neuro at my hosp and spoke to him and he said to stop it immediately - no arguments from me there. Hope this isn't too much information but i had to run too the loo and lost my breath at the same time.

Oh i dread this. I went through this for years with my A-deps now again for these, lets hope i get lucky and find one with no side effects for me.

Thanks everyone.

Looking forward to a bright day tomorrow.

Miss M.

 

[Meetz1064]

Awwww, I

wish you the best of luck finding a new med, Miss M. It's rough sometimes finding one. I went through that a while back with Keppra...