Feels like Freedom

[Crystal11]

Hey everyone. I thought I would write a little bit about how things are going right now.
I recently went to the neurologist and discussed a lot about my migraines which seemed to flare up over the last few months. He prescribed Butalbital and thank God for it LOL.. Migraines ruin my day! I feel more sick with a migraine that I do after a seizure! hehe
We also talked about how my seizures have been lately and I feel that I have been doing so well.
We recently changed my Lamotragine to Lamictal XR 400mg. I am still on Keppra XR 3000mg and so far so good. I have been off of Tegretol XR 600mg for 4 months now which feels nice.
He seemed like he thought it strange that a patient would ask to be taken off of a med instead of the doctor recommending it etc. I told my neuro that I would rather have a few minor seizures than take so much medications.
I take Propranolol/Inderal for Tachycardia and Trezix for neuralgia pain as needed. So less meds the better in my opinion.

Now I'm on just Lamictal XR and Keppra XR and seem to be doing well. When I don't have seizures for a while, I get more energized and seem much more in a better mood. I like waking up, getting around and not having interruptions in my day. I used to have up to 20 smaller CPs a day and it made me in a bad mood and just didn't feel I had my whole day.
It's like it was stolen from me..in a way.

So far so good and I am very happy.
I think Lamictal XR and Keppra XR at this dose is helping quite a lot and sometimes I sit there and think: "I haven't had a seizure in a while..feels strange." as silly as that sounds. lol
I more at ease about my seizures and hope that I get even better control after being on them longer. I wonder sometimes if I will be off meds one day. My last neuro said that I probably won't have total control or seizure freedom since Ive had them since I was 6 without treatment until later at 13 and then again at 22-now.

I hope you guys are doing well.
Good night all.

Crystal and her guide Umbro

 

[CQ:)]

Hi Crystal,

Its good to hear that your seizures are less frequent now & you were able to go of 1 of your meds.

That's funny how your neuro was surprised you wanted to be taken of the tegretol. I'm sure quite of a few people on this forum have reduced or gone of their meds in order to try other ways to help control their seizures.

I hope the Butalbital helps with the migraines because like you said migraines are a real pain in the butt.

Hope you are able to continue keeping the seizures under control & you never know one day you may be able to go of all the epilepsy meds

 

[Crystal11]

I too am happy about the Tegretol not being used. I haven't used it in a few months but am happy that the Keppra and Lamictal are working out so well. I always get nervous just getting on a new med and now that its working, its nice. My seizures seem to be in better control and actually I've had so much energy that I am not sleeping when I should (as in now) LOL.
I don't need a nap during the day and I am not as irriated. My last bigger seizure was in May- but maybe June since sometimes I forget to write it down. Almost not little ones-sometimes have one or two but those I don't really count even though I should. So for me, just a reduction in the little ones (45sec) is a great feeling.
I think the next neuro visit will be more positive and I will be glad to tell neuro about how things are going.
It has been so frustrating trying to figure out what will work and when to change and then change again etc..
we talked about surgery time before last and I surely wasn't happy. So knowing that meds are working is nice to know and feel.
I've had 9 surgeries in my life and don't care to have another LOL.

Now that is 5:08am here- time for bed.
Don't need break-through seizures due to lack of sleep oopps.. (working on that).

Crystal and her guide Umbro

 

[Nakamova]

Your neurologist was surprised that YOU made the request to go off a med? What world is he living in?

Anyway, it's terrific that your current combo is working and that you're feeling decent.

 

[Jbo57]

Hey everyone. I thought I would write a little bit about how things are going right now.
I recently went to the neurologist and discussed a lot about my migraines which seemed to flare up over the last few months. He prescribed Butalbital and thank God for it LOL.. Migraines ruin my day! I feel more sick with a migraine that I do after a seizure! hehe
We also talked about how my seizures have been lately and I feel that I have been doing so well.
We recently changed my Lamotragine to Lamictal XR 400mg. I am still on Keppra XR 3000mg and so far so good. I have been off of Tegretol XR 600mg for 4 months now which feels nice.
He seemed like he thought it strange that a patient would ask to be taken off of a med instead of the doctor recommending it etc. I told my neuro that I would rather have a few minor seizures than take so much medications.
I take Propranolol/Inderal for Tachycardia and Trezix for neuralgia pain as needed. So less meds the better in my opinion.

Now I'm on just Lamictal XR and Keppra XR and seem to be doing well. When I don't have seizures for a while, I get more energized and seem much more in a better mood. I like waking up, getting around and not having interruptions in my day. I used to have up to 20 smaller CPs a day and it made me in a bad mood and just didn't feel I had my whole day.
It's like it was stolen from me..in a way.

So far so good and I am very happy.
I think Lamictal XR and Keppra XR at this dose is helping quite a lot and sometimes I sit there and think: "I haven't had a seizure in a while..feels strange." as silly as that sounds. lol
I more at ease about my seizures and hope that I get even better control after being on them longer. I wonder sometimes if I will be off meds one day. My last neuro said that I probably won't have total control or seizure freedom since Ive had them since I was 6 without treatment until later at 13 and then again at 22-now.

I hope you guys are doing well.
Good night all.

Crystal and her guide Umbro

I'm glad to hear you are doing well. God bless you.

 

[Crystal11]

I thought it was strange that they wanted me to stay on Tegretol, Lamictal and Keppra all at the same time. He said he was getting me off of it and then tried to act like he wasn't right before I asked to be taken off of it. I wanted off of it and then got mad when I realized they almost didn't do it.

You would think that most people would know a lot about their own medical histroy or what they are on! My family doctor said that he wished most patients were like me, knowing their meds, how much of it you take and what for. I said "That's not good if something were to happen and people don't even know what they are on. It can be dangerous!" He agreed.

Anyway- I am glad things seem to be doing well. Feel very well and "free".

Take care
Crystal and Umbro

 

[Endless]

Wow, Crystal. It's GREAT you haven't had a seizure in awhile and you can go off one of your meds.

You asked to go off one? You are my role model! I'm now on two, and I'm gonna ask to make one go away.

I had asked my epi the same question about being drug-free. He had a complicated answer with lots of "depends" in it. But the bottom line was probably not.