Diary of an Epileptic

Rae1889

Veteran
Messages
2,651
Reaction score
0
Points
161
I'll have Chad with me the next visit. Plus it will be my last with Dr. Fast. Chris515 managed to get his Neurologist to take me on, so I will be making my next appointment with him. Yay! *Huhe hugs to Chris!*
 

Inaara

New
Messages
336
Reaction score
0
Points
0
Second best way is if you can get someone to come with you and have them take notes -- it keeps the docs on their toes.
This will be me soon...and I feel half sorry for the docs! :roflmao: "Motivating friend" is not the one I'd want to piss off if I were them, bwahahaha!

Yay to Chris (and Rae!) for getting the the new doc :)
 

Zoofemme

New
Messages
502
Reaction score
0
Points
0
SOrry to here about the T/C Rae...Big Hugz to you! Good thing that Chris got you into his neuro...a change in docs and perspectives is a good thing :)
 

Rae1889

Veteran
Messages
2,651
Reaction score
0
Points
161
Since no meds have been in my system for so long, the gluten free really hasnt helped much in control either. my idea was that maybe I had seizures from my brain scarring and that gluten was a big trigger for me. now it looks like the gluten simply helped my medication absorb properly or differently so that they would "work" better for me. with out the meds I have been a wreck. almost constant seizures. myoclonics or simple partials. back to clustering and longer complex partials and tonic clonics. I see Dr. Fast this afternoon at 4:00pm. its 11:15 now, so just under 5 hours to go. then maybe I can get on some other med while I wait for my referral to go through with Chris515's doc.
 

Zoofemme

New
Messages
502
Reaction score
0
Points
0
Oh Rae...I wish there was something more to do for you than offer just words of encouragement and a virtual hug...Winnipeg is such a long drive away dang it! Hopefully the doc will be able to offer you an alternative and it will kick in quickly without a negative reaction...HUGZ, BETH
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,568
Reaction score
50
Points
158
Let us know how it goes this afternoon. Hang in there.
 

epileric

Veteran
Messages
4,500
Reaction score
1
Points
163
Shoot Rae, I know how that feels.

When my seizures to go wild like yours the 2 things I do is be very aware of my breath, breathe long, deep & slow. If I feel a full blown seizure coming on I try to use the pressure point on the upper lip.

Meanwhile be careful.
 

Chris515

New
Supporter
Messages
550
Reaction score
0
Points
0
Good luck with everything Rae, hope the appointment goes well. Hopefully he can get you on another med for now. Dr Eggertson will help, I hope you'll be able to get in to see him soon.
 

Rae1889

Veteran
Messages
2,651
Reaction score
0
Points
161
Good luck with everything Rae, hope the appointment goes well. Hopefully he can get you on another med for now. Dr Eggertson will help, I hope you'll be able to get in to see him soon.
Okay so Dr. Fast has refered me to the Epilepsy Clinic. I didn't even know winnipeg had that. I have to call him for one More appointment in June, and then he is happy to drop me with his collegues.

I have been put on gabapentin 100mg, 3 times a day and he wants me to gauge the side effects and work my way to 300mg, 3 times a day. Never heard of this drug, although I'm sure someone here is on it. And not sure If this is a lot. It sounds like it, but when I look at Keppra people are on thousands on mgs a day.
He also thinks that Chad is a nice man to marry. He noticed my engagement ring and randomly inputted that If I were his daughter he would approve of the marriage because of all that Chad has been through with me. Kinda nice, but really out of topic and place. Not sure what to think of that.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,568
Reaction score
50
Points
158
Gabapentin is also known as Neurontin in the U.S., so you might want to search for info using that name as well.
 

darcness

New
Messages
251
Reaction score
0
Points
0
Rae, I haven't been around in a while but still come back to check on you every so often. It's so nice to read your story and know that we're not alone. It gives all of us, even those like me who have a loved one with E, hope to go on and that things will always wax and wane with E.

I'm sorry to hear that things aren't working well for you right now. Give it time hun and don't give up hope. Keep on trying and some day you'll find out what works for you. It just takes some experimentation unfortunately. I know you'll find something, regardless of what it is, that will turn your life around for the better. You have too good of an attitude and too much spirit for E to hold down. Take it day by day and baby steps for now.

Hope you're doing well soon. I'll be checking in again so don't think I've forgotten about you!
 

Rae1889

Veteran
Messages
2,651
Reaction score
0
Points
161
Rae,

When's your appointment with the epilepsy clinic?
He says that it could take a few months to even make an appointment. So keeping my fingers crossed for that to be sooner rather than later

And thanks darcness! Its nice to hear from you again and nice to hear that you and your lady are finally looking up in the E world.

Love and hugs!
 
Messages
1
Reaction score
0
Points
0
I'm so sorry about the MRI! I hope you never have to do that again! It sounds like that was terrible for you!!!
 

darcness

New
Messages
251
Reaction score
0
Points
0
Just checking in to see how you're doing Rae. I hope all is well with you and Chad. Let us know how you're coming along.
 

Rae1889

Veteran
Messages
2,651
Reaction score
0
Points
161
Ugh.
Seizures havent slowed. had one yesterday morning. My social was terribly long because of it. i didnt feel good the whole time yet I stil had to be happy and a good hostess. blah.
 

Endless

Even Keel
Messages
4,466
Reaction score
2
Points
0
Rae,

Sometimes a call from your neurologist or primary care doc to the epilepsy center can get you an appointment there sooner. It's worth a try. I'm really hoping you can get in FAST, becuase you are going through more than you should have to right now.

I'm so sorry your social was a burden instead of a joy. Sometimes I think epilepsy is a joy-sucker. Any chance you and Chad could go out with just your best friends and celebrate, in a way that isn't stressful or triggers seizures? This time for YOU, instead of everyone else?
 
Top