Hi I'm Kevin,
I posted a couple years ago about discovering my arachnoid cyst and hydrocephalus after a ct scan due to nocturnal seizures. My hydrocephalus is congenital. My whole life, 40 years, I've had this condition and had no idea. Signs early in life, such as headaches, were excused as nothing to worry about. Focal seizures were excused as staring spells. Decline in school performance was dismissed as laziness or lack of attention, although I was tested as well above normal as a child.
This condition even caused issues in social situations. I either didn't know how to respond or worse my "filter" took a break and I said or did whatever came to mind. And, I had no idea I was behaving this way. Luckily, it wasn't ALL of the time. In fact, it was kind of rare. But, it did happen.
Even in college, it just got worse. I went through a few close relationships because I did inappropriate or even violent things without realizing it. My wife, fortunately stuck it out until I started having noticable seizures. That led to some ct scans and mri's. That made it a little easier for the people around me to know that this behavior wasn't all my fault.
The lack of a "filter" got worse when they were experimenting with different medications. But, has gotten a lot better now that they got me on the right cocktail of medications. I do remember that when they took me off of Keppra (which did nothing), and put me on Trileptal, it worked for a while. Then when they upped the dose of Trileptal, it had an inebriating effect. So, they lowered that dose and added Lamictal.
Last year, I went to see a neurosurgeon. He said my cyst was the biggest he has ever seen in a functioning adult. Then they tested my CSF pressure. BTW LP's are terrible. They found out that my CSF pressure was about double the normal pressure. So they decided to fenestrate my Arachnoid Cyst in order to relieve the pressure. That 1 hour surgery took about 6 hours. They neurosurgeon said the cyst was filling up to fast for him to do anything, so he closed me up. Unfortunatly while doing that surgery, some trauma was done to the cerebellum. After the surgery I had little to no balance.
The neurosurgeon said that it was normal for that surgery. And, it's the brain, it heals at its own pace. About 2 weeks later (still no balance), I woke up with a massive headache and vomiting. That's when my wife noticed CSF drainig from my incision. Well, another trip to the hospital. The next day, they were doing scans and preping me for surgery for a shunt.
Well, after that surgery, massive pain in my side where they ran the drain lines. And, still no balance.
After another couple weeks with no improvement to my balance. Which involve me using a walker at times, the scooter thingy at wal mart. When I did walk with my walker, I got wore out mentally from concentration on ever step. I couldn't go more than about 50 ft without stopping to rest. Then the doctor decided to enroll me in balance therapy.
The therapist said he never had anyone as bad as I was. And, that he was looking at 9 months minimum before I could be fully functional. If you've ever studied really hard for a test and your head hurt in an exhausting kind of way. Well, I got that concentrated in the back of my head every time I got done with therapy. I had to rest before leaving.
But, I was determined to get better, I did extra therapy at home on my off days. After 6 months, I was running, Iwas going up and down stairs without a problem. All better. The therapist said he has never seen such improvement in that short of time.
Anyhoo, that was a year ago, earlier this year I wen rock climbing on my birthday.
I was seizure free for a year and a half. I had one about a month ago. I didn't realize it when it happened. I have mine while I sleep. I woke up kinda groggy, nothing new. But, all day got that feeling of being a little off. And the next day, and the next... After three days of feeling that way, I thought that I had a seizure. I took a look at my tongue and sure enough....
Okay, that happened. It's going to happen sooner or later. My biggest issue lately has been intimacy. I'm just not in the mood. At all. Ever. I read online that lamictal has had this ecceft on others, even though it is not listed as a side effect. Any people here ever had this issue since on these meds?
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Hi I'm Kevin,
I posted a couple years ago about discovering my arachnoid cyst and hydrocephalus after a ct scan due to nocturnal seizures. My hydrocephalus is congenital. My whole life, 40 years, I've had this condition and had no idea. Signs early in life, such as headaches, were excused as nothing to worry about. Focal seizures were excused as staring spells. Decline in school performance was dismissed as laziness or lack of attention, although I was tested as well above normal as a child.
This condition even caused issues in social situations. I either didn't know how to respond or worse my "filter" took a break and I said or did whatever came to mind. And, I had no idea I was behaving this way. Luckily, it wasn't ALL of the time. In fact, it was kind of rare. But, it did happen.
Even in college, it just got worse. I went through a few close relationships because I did inappropriate or even violent things without realizing it. My wife, fortunately stuck it out until I started having noticable seizures. That led to some ct scans and mri's. That made it a little easier for the people around me to know that this behavior wasn't all my fault.
The lack of a "filter" got worse when they were experimenting with different medications. But, has gotten a lot better now that they got me on the right cocktail of medications. I do remember that when they took me off of Keppra (which did nothing), and put me on Trileptal, it worked for a while. Then when they upped the dose of Trileptal, it had an inebriating effect. So, they lowered that dose and added Lamictal.
Last year, I went to see a neurosurgeon. He said my cyst was the biggest he has ever seen in a functioning adult. Then they tested my CSF pressure. BTW LP's are terrible. They found out that my CSF pressure was about double the normal pressure. So they decided to fenestrate my Arachnoid Cyst in order to relieve the pressure. That 1 hour surgery took about 6 hours. They neurosurgeon said the cyst was filling up to fast for him to do anything, so he closed me up. Unfortunatly while doing that surgery, some trauma was done to the cerebellum. After the surgery I had little to no balance.
The neurosurgeon said that it was normal for that surgery. And, it's the brain, it heals at its own pace. About 2 weeks later (still no balance), I woke up with a massive headache and vomiting. That's when my wife noticed CSF drainig from my incision. Well, another trip to the hospital. The next day, they were doing scans and preping me for surgery for a shunt.
Well, after that surgery, massive pain in my side where they ran the drain lines. And, still no balance.
After another couple weeks with no improvement to my balance. Which involve me using a walker at times, the scooter thingy at wal mart. When I did walk with my walker, I got wore out mentally from concentration on ever step. I couldn't go more than about 50 ft without stopping to rest. Then the doctor decided to enroll me in balance therapy.
The therapist said he never had anyone as bad as I was. And, that he was looking at 9 months minimum before I could be fully functional. If you've ever studied really hard for a test and your head hurt in an exhausting kind of way. Well, I got that concentrated in the back of my head every time I got done with therapy. I had to rest before leaving.
But, I was determined to get better, I did extra therapy at home on my off days. After 6 months, I was running, Iwas going up and down stairs without a problem. All better. The therapist said he has never seen such improvement in that short of time.
Anyhoo, that was a year ago, earlier this year I wen rock climbing on my birthday.
I was seizure free for a year and a half. I had one about a month ago. I didn't realize it when it happened. I have mine while I sleep. I woke up kinda groggy, nothing new. But, all day got that feeling of being a little off. And the next day, and the next... After three days of feeling that way, I thought that I had a seizure. I took a look at my tongue and sure enough....
Okay, that happened. It's going to happen sooner or later. My biggest issue lately has been intimacy. I'm just not in the mood. At all. Ever. I read online that lamictal has had this ecceft on others, even though it is not listed as a side effect. Any people here ever had this issue since on these meds?
Long story......
December 5, 2015 - 7:23pmThis Comment
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