hi Sue
I am picking up on this thread again. Since I last posted, I have been having those night episodes frequently.
I now have had visits with my neurologist. He is now arranging for me to be admitted as in patient on a special neuro unit in a hospital He said it will be 48 or 72 hours. They will do a video EEG monitoring test regarding seizures.
He is also booking for a spinal tap, and is testing for a few things. MS included.
My neuropathy is now so bad. I was on a steroid treatment with Prednisone for a few weeks, and it helped. That tells me there is a terrible inflamation on my whoke nervous system. Because those fine vibration like neuropathy pain I used to feel they got better. But now I am tapering the Prednisone over 4 weeks, for the last few days I felt very sick, ( as due to the Steroid was tapered)
I have to tell the doctor. I do beleave that my symptoms are from a systemic attack on my nervous system. I am very scared of those night episodes, I woke up and had one of those symptoms, as I woke up, I felt i urinated, very embarasing, but I thought it was like a seizure so I had to tell the doctor What do you think about this?
I thank you for the information to ask for a PET scan abd SPECT scan Can you explain theese?

Hi Synnove,

I think you are playing it smart going in and having a few tests done. I had this done a few times in the past and I'm sure the Dr. will find out what's going on.
The PET an SPECT scan will show a lot more detail in a persons brain that other tests don't show, it can show blood vessels, area of the brain that are more active etc. If you go on line and type in Neurology Now you can see the magazine and read about these tests they aren't painful or anything. I was amazed at all the detail my tests showed that other tests never picked up. You may want to ask your Dr. to do these tests. Here's wishing you only the best and May God Bless You!

Sue

Hi I am back
Sue,
I was admitted to hospital for 72 hours Video Monitored EEG. All the time I was ther I did not have any of those episodes that I described befor. I had one that I thought was similar, but not as severe and iontense as the ones I some times get.
The neurologist there said they did not see any seizure activity on the strips or monitor
So that is good, but I wish the EEG had observed a real episode.
Now we have to wonder what this is.
The neuro there at the hospital said that perhaps it is all head ache/migrane related.
Question; Will an aura show up on the EEG?
Thanks for reading this

Hi Synnove,

I'm glad to hear the Dr. said you didn't have epilepsy but there are times when an e.e.g. will not pick up and sz. activity because it's to deep in the brain. I can't be sure but it seems like an aura sz. would show on an e.e.g.
If I may ask did the Dr. cut you back on any of your meds or tell you to stay awake and not go to bed the day before your e.e.g.? If the Dr. didn't do either of these things then the e.e.g. was a waste of time and money. You should always cut back on the meds a day or 2 before the e.e.g. and stay up later at night getting less sleep this in turn give a person a better chance of a sz. which will show up on the e.e.g.
I would also ask to have an MRI with the dye or a PET or SPECT scan to be done. I wish you the best of luck and May God Bless You!

Sue

hi Sue
Thank you for your reply. No, the doctor did not instruct me of any of those things. I am on a pritty high dose of Lyrica due to neuropathy. ( and of course, we know that this is an anti seizure med) And I did not think of asking eighter. If I had, perhaps I would have had some withdrawal symptoms? And I did not think of staying awake the night before, and I was not instructed to As a matter of fact, the first night in the hospital I did not sleep at all I think, due to all disturbance and noice. I was in a room with close observation, and door open etc. But I slept the second night.
I have those strange episodes 2 or 3 times a week. And it was unfortunate they did not "catch" one. I would think it would be unreasonable that they will do it again. You mentioned PET scan and SPECT scan. I will make sure I ask my neuro for that. I also will tell him regarding the lack of proper pre procedure instruction.
The symptoms are unlike anything I have ever encounter.

hi,
there is one more thing, I have had MRI of brain so many times in last 2 years. due to an aneurysm. and TIA and CVA. ( It also showed leisons that looked like MS) The last one with the dye, I think was in October last year, and that was befor I was having all of theese symptoms So I should be due for one now, they could also check for new demyelinating lesions.
Wat is best PET, SPECT or MRI?

Hi Synnove,

If I were in your place I would have either the PET or SPECT scan done because these tests will show much more activity going on in the brain than a MRI will. They show more detail of activity going on along with blood flow through a person blood vessels and much more. Some hospitals have changed these tests over so everything is in color and that's when it really shows a lot of detail if you want check out Neurology Now (magazine) and it will show you a picture of one of these tests.
Just like you have hav 2 lesions that are bilateral on both temporal lobes.
If MS runs in your family there is often a contection between MS and epilepsy. I had an aunt that had MS for 15 yrs. and what helped her the most is steroid shots every other day. If you start to notice any pain in your body and it's hard to get around and move this could be MS but I hope I am wrong. Here's wishing you only the best of luck and May God Bless You!

Sue

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