Hydrocephalus

[epilal]

Hi,

I'm new here. I may have made one or two posts a few years ago but other that than that, I'm basically new.

I searched for my question but got too many hits on too many threads and I'm not very good a reading long threads either.

Has anyone here been diagnosed with "hydrocephalus?" That's also referred to as "water on the brain." I have a lot of the symptoms of hydrocephalus but have never been tested for it. I've had quite a few seizures over the past five years and I'm 62 years old now. So if you do the math, I didn't start having seizures until I was 57 years old. However, I started having a lot of the symptoms of hydrocephalus when I was in my young 20s while I was in the Navy. The doctors never found anything wrong but after I got out of the Navy, my private doctor had me start taking Valium, which is a very addictive drug but also helps prevent seizures. I think he just got tired of seeing me and told me to try Valium and at the time, little was known about the drug. That may have contributed to me not having seizures until I was 57 years old.

Once I started having seizures, I had at least three EEGs done, maybe four or five. The last one is when I was diagnosed with epilepsy but none of the others had been diagnosed as epilepsy. I have a "hunch" I may have been misdiagnosed as having epilepsy because at the time I was trying to quit taking Valium and I've read on other websites that people trying to quit taking this drug causes "electrical shocks (zaps)" in the brain and that's what I felt when I was diagnosed with epilepsy.

So, my question is, has anyone been diagnosed with hydrocephalus and causing their seizures?

Thanks for any insight,
epilal (Dave) :dontknow:

PS. If anyone is interested, I'm now taking 2,000 mg of Depakote (1,000 am and 1,000 pm) and 400 mg of Dilantin (all at night).

 

[Endless]

Hi, epilal,

First, welcome back!

I have Idiopathic Intracranial Hypertension (IIH, or as it used to be called, Psudotumor Cerebri). I'm still trying to figure out the difference between that and hydrocephalus. The net result of both is fluid pressure in the brain that is way too high.

My doc isn't sure if my seizures are physiological/non-epileptic, or epileptic. The IHH could be causing it all (physiologic). Pretty hard to sort out. The AEDs have had some, but not total, success.

We're trying to get the fluid pressure in my head under control for a few months so that we can see if the seizures will totally dissapear. That would be very telling. So far the pressure is not under control, which is another story. I do NOT want to be traveling down the merry path to brain surgery.

In the meantime, I'm on Diamoxx, ACTZ, Lamictal, gabapentin, and a whole host of other stuff. Managing my meds has become ridiculous. I have to take pills 5 times/day.

There are tests these days for high fluid in the brain. A spinal tap where they measure the opening pressure is a good indicator. See a neurologist and tell hin what you suspect. If it's anything like IIH, it's rare - 1 in 100,000. So the neurologist might be pretty clueless. But hopefully they'll at least know where to send you.

 

[epilal]

Thanks for the quick reply. I'm taking 11 pills twice a day and managing them is also a chore. Eight are related to seizures and the rest are for other things. I tried "alternative" medicine but the seizures returned and I figured out that wasn't such a good idea. Each time I have a seizure, my memory is bad for a few months and never quite returns to its previous condition. I have an appointment with my neurologist on February 3rd so I will ask him about both conditions.

Regards,
epilal (Dave)

 

[Endless]

Epilal,

Over time, how have the seizure meds worked for you?

Physiological non-epileptic seizures are seizures that are caused by a physical illness, like cardiac, hormonal, or in our case, neurological (high fluid pressure in the brain). The seizures are caused by these physical problems, not by electrical mis-firing in the brain.
AED's typically don't work on this type of seizures.

The thing that gets confusing is that seizures have random variation - it can look like meds are working, when it's really just a natural pause in seizures. Quite the puzzle.

 

[epilal]

Epilal,

Over time, how have the seizure meds worked for you?

Physiological non-epileptic seizures are seizures that are caused by a physical illness, like cardiac, hormonal, or in our case, neurological (high fluid pressure in the brain). The seizures are caused by these physical problems, not by electrical mis-firing in the brain.
AED's typically don't work on this type of seizures.

The thing that gets confusing is that seizures have random variation - it can look like meds are working, when it's really just a natural pause in seizures. Quite the puzzle.

Well, the meds seemed to be working fine but then I had a "probable" seizure just over three years since I had my previous one. I say "probable seizure" because I had what I have called "symptoms" all day and then woke up the next morning and had severe memory problems like I usually have after a seizure. This means I probably had a seizure while I was sleeping. Then I discovered I had mixed in some "vitamin pills" with my Dilantin (they look almost the same) accidentally. However, just to be on the safe side my doctor raised my Depakote to 1,000 mg in the am and 1,000 mg in the pm (it was 750 mg am and 750 mg pm). Yes, I agree sorting this out is hard, but it's almost a "slam dunk" that I will have seizures if I cut back on my meds so I have decided to do what the doctor says. I hope this answers you question. If not, let me know.

epilal (Dave)

 

[epilal]

Well, the meds seemed to be working fine but then I had a "probable" seizure just over three years since I had my previous one. I say "probable seizure" because I had what I have called "symptoms" all day and then woke up the next morning and had severe memory problems like I usually have after a seizure. This means I probably had a seizure while I was sleeping. Then I discovered I had mixed in some "vitamin pills" with my Dilantin (they look almost the same) accidentally. However, just to be on the safe side my doctor raised my Depakote to 1,000 mg in the am and 1,000 mg in the pm (it was 750 mg am and 750 mg pm). Yes, I agree sorting this out is hard, but it's almost a "slam dunk" that I will have seizures if I cut back on my meds so I have decided to do what the doctor says. I hope this answers you question. If not, let me know.

epilal (Dave)

PS. That's one of the reasons I asked about hydrocephalus. I'm wondering if something else might be causing my seizures instead of epilepsy. Until the doctors find something else wrong, I have little choice except taking the current meds.