Hi Porkette, I am back again.
and again looking for your help.--- I hope all is well with you.

Since I last posted, my neuro doctor has deceided to take me back to the hospital for a 72 hour long Videomonitored EEG.
And he is also refering me to a epilepsiologist ( right spelled?)
But I am not so sure this is simple partial seizures. When I wake up suddenly from a deep sleep, I feel a verry intense vibratory feeling, almost like electric current, down my spine from the base of the skull (or it feels like from the line drawn between each ear)
right down to the end of my spine at the genitalia area, then it goes down my legs, it almost feels mostly in right leg all the time. This is acompanied by a feeling of spreading warmth. Then after a while of this, I feel the heavyness of legs, as in feeling of inner numbness. The episodes last for a long time, up to 1 hour. Sometimes I just feel so tired and drowsy, I go back to sleep. Sometimes I get very frightened, and get out of bed. When I get up lately, I feel very dizzy.
Since I have neuropathy, I am wondering if this whole thing is the neuropathy. I also had a spinal tap, it was negative for MS or any CNS inflamation.
Since I have herniated C 6-7 disc, I am wondering if it could be from that, because I think the disc was impinging on the cord posterly. Last time I checked with the spine doc, (July last year,)
I have now made apt with him again.

I will be going for this 72 hour video monitored EEG on Monday. I asked my doc re holding the antiseizur med Lyrica ( which I take for neuropathy pain) he said no. He said because I am not taking this med for seizure prevention. So I do not know. he is not a specialist on this. Perhaps I should call the other doc to ask re holding it. Perhaps I could just hold a couple of doses.
I will try to stay up the night before.

Any other precautions I should know?

All the best
Synnove

Hi Synnove,

I personally think a veeg would be a good thing for you to do. By doing this the Dr. can monitor your brain and see what's going on because you will be on camera around the clock except when using the restroom.
The brain is the most active when a person is sleeping and you may be having some type of sz. in your sleep it sounds like a possible simple partial or maybe an absence (petit mal) sz. you are having. I have both of these types of sz. and when I was on Lyrica it didn't help me at all. I also have herniated discs L4, L5 S1 so I know what that's like. If your sz. are lasting longer than before this tells me the sz. med you are taking isn't helping you at all.
It will be good for you to see an Epileptologist in my opinion. I've seen many different neurologists over the yrs. and when I started to see an Epileptologist this Dr. was able to pinpoint the location triggering my sz. and he also did a DNA test on me to see what sz. med would help me the most only to find out I'm drug resistant to all sz. meds that are out on the market right now. Later on I had brain surgery to help reduce my sz. Take my word it will be a smart move seeing an Epileptologist and getting their opinion these Drs. can order a PET or SPECT scan also if you haven't had one yet and these tests show all the activity going on in the brain along with much more detail. I wish you the best of luck and May God Bless You!

Sue

Porkette,
Thanks for the input.
How do you monitor yourself regarding seizures? Do you keep a journal for the doctor? What kind of seizure precautions do you keep for yourself?
What about your daily activities? Are you working?
How often do you have to take antiseizure medicarion?
I actually take Lyrica for symptomcontrol of neuropathy. My neuro doctor mentioned something about adding Dapakot, depending on test result. I have theese strange neurological events during the night only, and it always seems to be connected to sleep, because it wakes me up, and I otherways sleddp well. I have, as I mentioned severe small fiber neuropathy ( at least that is what the neuro told me) and I am thinking the two symptoms could be connected.
My brain MRI is showing a "deep cerebral cogenital angioma" it actually states" left posterior frontal lobe congenital venous angioma. I wonder if this is what is causing problems. I also have had severe left frontal headache lately, and "bilateral vertebral arteries impingement on the Medulla" almong other things. But the aneurysm has been delt with. It is only theese two things that I do not have any explanation for.
Regarding family history of epilepsy, I have a niece that has it ( but I do not know from what part of the family she might have inherited it)
And my son had very bad fever convulsions up until about 5 or 6 years of age. I had to give him Phenobarb liquid medisine daily.

I hope I will get some good help from theese 2 neurologists I am going to see. It is a neuromuscular neuro that specialize in neuropathy, and the other is the epileptologist and he is also the one that overseas the EEG monitoring.

It is my usual local neurovascular doctor that is sending me for the consults and ordering the tests. I do not realy know how good they are. I am trying to stay within my insurance network. My insurance is tied to a spesific healtcare network So we will se.

Porkette, it seems like we all have to try and think out the best ways of solving our helath problems.

Best wishes
Synnove

Hi Synnove,

I have bilateral lesions on the right and left temporal lobe of my brain along with the frontal lobe of my brain. I had the surgery done to reduce my sz. but I've had so many sz. over the yrs. even after the surgery was done that it caused more brain damage but I have gotten used to it after living with epilepsy for 42 yrs. now.
I keep a calendar and write down what time I have a sz. along with the type of sz. I have once in awhile I will write down if I'm sick with a cold or virus along with any low pressure in the weather. It has been proven that when a person gets sick and when there's a low pressure in the weather this can often trigger sz. for a person. By keeping track of my sz. on a calendar my Epileptologist found a pattern in my sz. and noted that I also have more sz. in the fall and winter compared to spring and summer when I have fewer sz. and this is do to the amount of serotonin in the air which I never knew about until a couple of yrs. ago.
When I have a sz. sometimes I will get a simple partial (aura) sz. where I will start to see colors in my eyes and get a nervous feeling in my stomach the moment that happens I tighten up all the muscles in my body and make my hands into tight fists, if I do this in time it will stop the sz.
I live a normal everyday life, I can't drive do to state law but I try to keep busy and I work full time so it's nice when the weekend comes I can take it easy and relax after the laundry and housework is done. I take my sz. meds twice a day once in the morning with breakfast and then again at 5 pm.
Years ago I was on Depakote and it worked great for me but then my body became immune to the drug and it also caused me to become anorexic where I would eat my 3 meals a day along with snacks but the drug caused me to lose to much weight I lost 70 lbs. in 4 months then the drug started to eat up the blood platlets which is very rare so I had to go off the drug.
I have a feeling you may be having myoclonic sz. meaning the person has sz. when they first go to bed and when they wake up in the morning. Last spring I had to have a sleep study done and My Epileptologist found out I was having sz. in my sleep 1-2 hrs. before I would get up in the morning but since I have been on vimpat that has stopped that form of sz. You may want to ask the Epileptologist to do a sleep study on you and it's up to you but I would stick to seeing an Epileptologist because they not only deal with epilepsy they know all about other neurology disorders and problems and can treat you so you would only have to see one Dr. instead of 2 different Drs. but that is up to you.
I wish you the best of luck and May God Bless You,
Sue

Porkette
Yes, I too write a journal, sort of. I have to keep a journal of all the different symptoms that I have from day to day. When I first told the neurologist about theese night episodes, he asked me to take notes of it, and I have.
You mentioned you had had the myoclonic seizures at night.
I have seen a pattern in my episodes as far as time goes. They usually happen around 0100 at night, and the often again at around 0400. Then sometimes it comes as I wake up in the morning.
This is the strangest thing. When I finally get to see this eleptiologist, I hope to have a good brain scan. ( I have already had a lot, but not the SPECT scan.
I can not see why it is that I should have some sort of epilepsy, that nothing shows up during the day.
I am also wondering if it has something to do with effects from Lyrica.
But hopefully I can have it clarified.
My niece that has Epilepsy, she has done very well, has 4 kids, and is active working. I think she gets her drivers licence ok ed after certain time witout seizures. I do not know what medisine she is on.
All the best
Synnove