Hi All!
I've been trying to find people to talk to who have been through this, so I'm really glad I came across this forum.
It's all new to me.
I'm one of those people who never had health issues ever (except sleep difficulties). Then suddenly, at age 37:
Sept 23, 2015 - I had my first four partial seizures. At the time I didn't know that's what they were, just that I had a very strong, very strange, abnormal "deja vu" which made me say out loud, "weird". Then I had a crazy headache for the rest of the day. They continued multiple times per day over the following 10 days.
Oct 3, 15 - my first "bad" day. Four VERY strong partials, which made me dizzy and nauseated and tired. Also anxiety. I had googled and decided to go to the doctor, who put in an "urgent" referral to a neuro. She also requisitioned ECG and a bunch of blood tests (all came back normal except extremely low ferritin, so I started on iron supplements).
Nov 12, 15 - first meeting with the neuro. He requisitioned CT, MRI, EEG. All were done by the end of December. Thank God I live in Canada--it happened so quickly and didn't cost me a penny.
Jan 20, 16 - Second meeting with the neuro, where he told me all my tests came back clear and started me on Tegretol.
Mar 3, 16 - After far too many side effects (depression, fever, rash, etc.), I was taken off the Tegretol and started on Keppra.
Jun 2, 16 - I reported to the neuro that I thought the Keppra was helping a bit, but not completely. He decided to increase the dosage.
Jun 9, 16 - my first two generalized seizures. The first one happened at my office and landed me in the ER, and the second happened in the ER. Clearly the meds are not helping.
In general, I have felt as though the Keppra is helping the mild daily activity but not the strong ones, which come in clusters (and seem to be tied to my monthly cycle).
It's been almost two weeks since the hospital visit and my neuro hasn't even bothered to call me back, even though I've called there twice to ask what he wants me to do now that it's gone from partial to full. I thought that was a big deal but he apparently doesn't think it's important enough to talk to me about it. :/
I've been reading some of your other intros and can identify with all the feelings of frustration, sadness, helplessness, embarrassment. I am fortunate to have an incredibly awesome support network and yet I still feel lonely and sad and scared.
I have sooooo many questions and can't wait to read through more of your experiences and get your thoughts on everything. Thank you for being here.
~Holly
I've been trying to find people to talk to who have been through this, so I'm really glad I came across this forum.
It's all new to me.
I'm one of those people who never had health issues ever (except sleep difficulties). Then suddenly, at age 37:
Sept 23, 2015 - I had my first four partial seizures. At the time I didn't know that's what they were, just that I had a very strong, very strange, abnormal "deja vu" which made me say out loud, "weird". Then I had a crazy headache for the rest of the day. They continued multiple times per day over the following 10 days.
Oct 3, 15 - my first "bad" day. Four VERY strong partials, which made me dizzy and nauseated and tired. Also anxiety. I had googled and decided to go to the doctor, who put in an "urgent" referral to a neuro. She also requisitioned ECG and a bunch of blood tests (all came back normal except extremely low ferritin, so I started on iron supplements).
Nov 12, 15 - first meeting with the neuro. He requisitioned CT, MRI, EEG. All were done by the end of December. Thank God I live in Canada--it happened so quickly and didn't cost me a penny.
Jan 20, 16 - Second meeting with the neuro, where he told me all my tests came back clear and started me on Tegretol.
Mar 3, 16 - After far too many side effects (depression, fever, rash, etc.), I was taken off the Tegretol and started on Keppra.
Jun 2, 16 - I reported to the neuro that I thought the Keppra was helping a bit, but not completely. He decided to increase the dosage.
Jun 9, 16 - my first two generalized seizures. The first one happened at my office and landed me in the ER, and the second happened in the ER. Clearly the meds are not helping.
In general, I have felt as though the Keppra is helping the mild daily activity but not the strong ones, which come in clusters (and seem to be tied to my monthly cycle).
It's been almost two weeks since the hospital visit and my neuro hasn't even bothered to call me back, even though I've called there twice to ask what he wants me to do now that it's gone from partial to full. I thought that was a big deal but he apparently doesn't think it's important enough to talk to me about it. :/
I've been reading some of your other intros and can identify with all the feelings of frustration, sadness, helplessness, embarrassment. I am fortunate to have an incredibly awesome support network and yet I still feel lonely and sad and scared.
I have sooooo many questions and can't wait to read through more of your experiences and get your thoughts on everything. Thank you for being here.
~Holly
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