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facenu (@FaceNu)

New to epilepsy and need guidance and support

Epilepsy & Seizures | Last Active: Jun 7 1:17am | Replies (33)

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Hi @irvkay312 @FaceNu @19aleckelly @beccahp @debburrington
Just checking in. How are you doing? @FaceNu how did you appointment go this week with your neurologist?

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Replies to "Hi @irvkay312 @FaceNu @19aleckelly @beccahp @debburrington Just checking in. How are you doing? @FaceNu how did..."

It went fine and my new medicine Keppra was increased to 2000 mg. a day
over a period of four weeks, in an effort to wean me off of the Primidone
entirely in time.

Fatigue still a problem. I believe from experience and events that “when I
broke my hip in two places, I was downhill already enery wise. With the
standard protocol in Rehab to get you up soon–their physical aoccupational
therapies used up my calories and proteins before they could be renewed.”

Consequently, I feel I’m facing Muscle Wasting now, due to third stage
chronic kidney disease and the Islet Cell Cancer that mestasized to the
liver and was uptaken by the spleen, GI and GU tracts.

Neurological control remains stable fortunately.


Hi Ms Colleen! Zach is having ups (YEAH!) and a few downs in the past few weeks. The new doctor has him on a new medicine. Getting that regulated is a challenge! He HAS been able to get out of the house some in the past few weeks!!
Everybody at church has been just REALLY encouraging and HAPPY to see Zach out and about! All those prayers are
On Wednesday, Zach is going to visit his brother for a few days. Joel is a dentist and is going to do a bunch of work on Z’s teeth. All the medicines are having a horrible effect on Zach’s teeth! We hope Z is able to handle the noises and the smells AND the unfamiliar bedroom! We hope the visit goes well!
Thank you for checking back on us! I hope you have a great week!
Becca 🙂

It is interesting to see that there are others with very frequent migraines. Mine are daily, mainly nocturnal but only 24/7 at times Weather changes and springtime often cause my migraines to be extremely severe that I am confined to bed for a whole week. Debburrington, Topamax and Lamictal are anti-seizure medications yet they caused seizures in you? How unusual. Now I know someone else who has most likely taught doctors something new. Just like me. Seizures are not related to migraines! Where did your doctor get his catalog degree? I've tried triptans but never Verapamil. What class does that fall into?

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