Starting Over
 

Hello again everyone.
Man, it's been a long time since I've posted regularly. Someone once said that people only post when things aren't going well, when things are good they move on... That's actually pretty true. I used to post pretty regularly, then moved on and for the last few months have been looking for this site and haven't been able to find it.
I've been seizure free for four years. Or so I thought. I started having what I thought were possibly simple partials about six months ago and some serious headaches (which have been known to plague me before). I questioned hormones, blood sugar levels and again returning seizures. I had a brain tumor removed 4 years ago Aug. 21 and had been seizure free since then. I went to the neuro for the first time in over two years this last week (the headaches are just too much for me now) and she said I'm definitely having migraines and she thinks simples occasionally too. Uughh.. I started Topamax on Wednesday night.

Kinda creepy to be going down this road again,but like she said better to get it early and before it gets worse... Maybe in a couple of years I can try going off meds and they will be gone. Who knows.

Either way, I guess... I'm back.
stef

Hi Stefie,
I don't know if you remember me, but I had a tumor(colloid cyst) removed Nov 2000. I was on seizure meds for a year post op and was allowed to wean off the med. I went about 2 years without problems, then the dizziness, visual disturbances in left eye started. I went back to my neuro, and she had me take another eeg just to see what was going on. It was abnormal, and she started me on seizure med again. I continued this for about 2 years, and saw her again last month after having another sleep deprived eeg. She says normal, and to start weaning again. Honestly, I am scared the same thing will happen. Things will go fine for awhile, then I wind up having to go back on the med.

Somewhat reluctantly, I have begun weaning from the Trileptal. We will see what happens.

One thing about the topamax, it will help with the headaches as well as seizure control.

Hang in there. You have gone through a very serious surgery, and recovery.
I can totally relate to your feelings of frustration right now.

Wishing you the best, Dodi

I've been seizure free since tumor was removed 7 months ago but I have to go back to hospital every 3 months for "check-up" MRIs. That will last for 1 year then the check-ups will drop to once every 6 months. Then it will be MRIs once a year for the rest of my life.
I'm currently on Trileptal and Topamax and the neuro said that in Oct. I'll start dropping some of the meds but I will be on AEDs for the rest of my life.

I had an Astrocytoma removed 27 yrs ago. Didn't need AED's for the longest time. I was on Depakote for a couple of years but I have achieved better control with Keppra and have been sz free for over 2 years now. Wish you the best of luck gaining more control.

Hi Stefie,
It's good to see you back! I know that when my Dr. put me on Topamax it increased my sz. making me have 23 sz. in 1 month the AED just made things worse for me and just like you I got headaches also. I hope things get better for you and the sz. stop. Here's wishing you well and May God Bless You!

Sue

Starting Over..
 

Hello again..
Thanks for the response everyone. I really have missed this site. I imagine everyone has.
Originally I was told I would have to do MRI's every year for the rest of my life but after a couple of them came back clean I would only have to do them if I had problems or symptoms (which for me seems to be whenever I have headaches,which is frequently).
I stopped taking AED's 9 months post op (I think anyways) and did fine (except for the headaches) until the vision thing started in. What was your vision distubance like? How did it progress? I'm a bit wierded out about the possibility of these small seizures "growing" into larger ones (exactly what happened last time over the course of several years).

I'm going to schedule another MRI soon. Just waiting for the hospital to call.

Jingle- You had a DNET removed didn't you? That's what mine was. I seem to recall talking with you about that before. I'm glad to hear you're doing well.

Stefie, I hope everything turns out great for you! Be safe for now, and keep following up until you have all the answers you were looking for. :)

Ah, Stefie..... I'm so very glad to hear you're having another MRI soon. ( I hate having those miserable things done - noise terrifies me - and I have to make a 1 1/2 - 2 hour drive to have mine but I wouldn't miss one for anything :o ) I think those check-up MRIs are SO important.

My tumor was a grade 2 oligodendroglioma and it's rare but not impossible for those things to return.

Like I said - seizures haven't returned but some headaches have. Certainly not like they used to be but.........

Hi: I was reading the posts and thought I would like to respond,but I haven't had surgery, I have no right to put my nose in this. BUt if your lives can be made easier I thought why not. This is not to offend anyone or to be pushy.

Would any of you consider acupuncture to control your pain from the headaches. You would still be getting your checkups and taking your meds.
But your pain would be controlled and you would have quality of life.

Wishing all of you the best of health!!!!
Sz free life without headaches and side effects!!!

Riva

Still pluggin' away!
I got my copy of the doc's report to my normal doc and have a couple of questions (like what is "temporal lobe dysfunction")... I posted another question here on the board for someone to offer some wisdom.

Dodi- Of course I remember you! I see lots of familiar names on here, good to see so many have found their way here. Glad I made it.

Jingle- Oligo looks a lot like DNET, lets hope neither of them returns.

and Riva- it's not pushy- I've considered acupuncture, I actually wore a temporary short needle for three days as therapy for my TMJ and it really did help. That's the only experience I have with 'acupuncture' of sorts (it was a bit different) but it did help.

Now I have a cold and can't tell if it's the topamax,the cold medicine or the cold itself but I feel totally stoned and that's not a lot of fun. Hopefully it's not the topamax cause my headache actually feels better. I'm really sensitive to cold medicine so I usually only take half a dose or even take childrens (I took half a dose of childrens this morning when I left for work at 7 am) and felt totally buzzed all day. Matter of fact I didn't feel 'better' until I came home and took half a dose of night time cold medicine at 5 pm. Funny huh?