Results from 3 day VEEG

[horsehead]

I got my medical records back from the university. according to them I had 4 spells while doing the eeg. I only remember 3. 2 with rapid eye blinking one i didn't know I had and one where i pushed the marker button and I couldn't respond to the nurses. i had 2 nighttime spells both i guess i woke up in stage 2 sleep and screamed and my legs kicked out under the sheets . They only lasted a second. They said it was either non e seizures or parasomnias. What do you guys think?

 

[Nakamova]

Do you also have seizure-like symptoms while awake? That would tend to rule out parasomnias, or at least indicate that other things were going on in addition to the parasomnias.

They can treat parasomnias a number of ways (including with Depakote, which is also used to treat e-seizures), so perhaps the most crucial thing is what they are recommending in terms of treatment.

 

[horsehead]

They didn't recomend anything. Just took me off of keppra and klonipin , which were helping.Said go home and have a nice day.

 

[Crystal11]

It is possible that they feel that the episodes you are having aren't epilepsy related or due to an abnormal electrical discharge in the brain.
It would not make sence to just take you off of everything so soon without doing other tests.
Maybe you can have a sleep study done to see if you have a parasomnias or other sleep related events..

Take care,
Crystal

 

[occb]

I think doctors need to stop relying on EEGs alone to make a diagnosis, since there are often false positives and false negatives. I suppose a good doc would take all things into consideration.

 

[Rae1889]

I agree with Crystal.
Although I do understand them taking you off the meds. maybe they wanted to make sure that they didnt do more harm keeping you on the meds. But they should have had you taper off slowly and then replace it with something to help with the parasomnias. this way they could have seen if it helped any.

I do think that they should run a few more tests before giving you a definitive answer. If they think its NES, have they ever asked you to see a therapist or psychologist etc? They seem to be putting you in the middle of nowhere. regardless of what your diagnosede with. "You have E" and then dont follow through with that to make certain. "You have NES" and then dont follow through with that to make certain. "You have parasomnias" and then dont follow through with that to make certain. I would be madder than hell at them.

Be proactive and ask them to explain why the sudden stop in meds and why not Rx something to parasomnias see if it hellps.

*grumble grumble doctors grumble*

 

[horsehead]

Crystal this was done back in september. I just got all my medical records sent to me and finally saw what they wrote. Yes they simply took me off everything and said they nno longer needed to see me because I did not have epilepsy.
Nak I do have daytime spells too. two of the spells recorded were during the day.
i have had a sleep study done it came back normal except that i body rock in stage one sleep. I did not have any spells during that study.I was on the medication then ( keppra and klonipin)
According to the report and I did not remember this but I did not have any spells at all since I started klonipin. They had me ween off klonipin before getting the VEEG and just stopped keppra when I got there. I started having spells the second day I was there. i continued having spells everyday after that for two weeks or so. Then they stopped for some reason for about a month and came back.
i went to my regular doctor and she tried starting me on trazodone. that was very bad in one weekend I had 3 tonic clonic type spells losing bladder and almost constant crawling sensation all though my body. that stopped as soon as i stopped the trazodone. she then tried nortripiline. That is helping me sleep but i still have spells. For the last few days I have had a tingling filling in my neck ,top of my head and face that will not go away. My eye started blinking a little earlier today as well but no other issues. I am seeing a psych now as well no changes from that.

 

[Nakamova]

Given loss of bladder control, sounds like epileptic seizures to me -- Your neurologist doesn't seem to be putting the pieces together, or at least providing you with some comprehensive assessment, explanation, and treatment plan.

 

[horsehead]

I never lost control of my bladder,to that extent anyway, before being put on the trazondone. I think those spells were do to that medicine. I have however bit my tongue and completly through my cheek in the past. They didn't seem to care about that.
What do you guys think the tingling is from.its in my arm today as well.

 

[horsehead]

No he is not doing anything for me at all .He dropped me as a patient.

 

[RobinN]

I think changes in type of seizures and including bladder control can possibly be due to medication intolerance as well. You could have nerve damage that is causing the tingling and blinking issues.

Dr Blaylock says that seizures due to blood sugar are often overlooked.
Here is his response to a parent of a 19 yr old that has nighttime seizures.

Since seizures often occur during sleep, they are
frequently not diagnosed. There are many newer
observations concerning seizures that can offer new
ways to control them. One of the links most often
overlooked by physicians and even neurologists is
hypoglycemia. We know that, in healthy people,
dropping the blood sugar rapidly can precipitate a
seizure, and those prone to seizures are much more
sensitive to hypoglycemia.
Studies have shown that a buildup of the
excitotoxin glutamate in the brain triggers the
majority of seizures, and most of the newer
antiseizure medications block glutamate receptors in
the brain. When blood sugar falls, brain glutamate
levels rise. So, avoid sugar and high glycemic foods,
especially around bedtime. Potato chips are a major
culprit, especially those with excitotoxin additives,
like MSG. Magnesium plays a major role in
regulating glutamate receptors and has been shown
to reduce seizure risk. Take the magnesium three
times a day. The last dose should be made by mixing
500 milligrams of magnesium citrate/malate with 4
ounces of water. This allows rapid absorption and
promotes good blood levels.
Another anti-seizure supplement is L-carnosine, a
natural compound that suppresses seizures triggered
by excitotoxins. It also protects the brain. The dose
is 500 milligrams three times a day, to be taken 30
minutes before each meal.
DHA, which promotes brain development and
repair, has been shown to reduce seizures as well.
The dose is 1,000 milligrams a day. Omega-6 oils
increase the incidence of seizures, so they should be
avoided as much as possible. It has also been shown
that all antioxidants reduce seizures, especially if
used in combination. Vitamin B-6 (as pyridoxal
5-phosphate) reduces brain glutamate levels and can
reduce seizure risk. The dose is 25 milligrams to 30
milligrams a day. Melatonin (time-released form) is
another nutrient that helps: Take 3 milligrams to 9
milligrams 30 minutes before bedtime

 

[horsehead]

Thanks for the info robin. I have been tested for that but it has been awhile.

 

[Endless]

:agree:

Yes, I've been tested for all those things as well, and am negative for all.

Some tests are really easy, like just drawing some blood. Some are not so easy, like an endoscopy to look into your stomach and take a biopsy of your large intestine (to test for celiac disease). That last one most insurance pays for, while most insurance doesn't pay for genetic testing which would uncover if you have the gene for celiac's.

Also blood glucose tolerance tests (for hypo or hyperglycemia) are about 5 hours long, and you have to periodically drink lots of nasty sugar stuff colored with what I'm sure must be an extra-nasty orange chemical dye and have your finger pricked all day long to have your blood sugar tested.

Testing for minerals and toxic minerals, etc. requires giving up not only blood but also some hair, which I hate to do, even a little sample. (snip snip!)

My insurance doesn't pay for genetic testing, otherwise I'd have that done. A few of the specific genetic-based epilepsy types respond differently to meds and surgery, and the doc can better prescribe treatment: http://pcs.hmc.washington.edu/Epilepsy/EpiInfo/genetic.htm

The point is, you don't have to fumble around trying cures when you don't know if you even have that problem. There's a test for almost everything. If you have good insurance it's worth going to your doc with a list of possible epilepsy root causes and get tested for as many as you can.

A few you can't test for, and for those, you'll have to fumble away!

:twocents: