[Mac33]

Hi guys - I posted this over on the general form and it was suggested I paste it here too, to see if it means anything to any of you.

Brief medical history - I've been diagnosed with cerebellitis (inflamation of the cerebellum), and have assorted other neurological issues, which may or may not be related.

Tests I've had so far are CT scan a few months ago (negative), MRI in May or June (also negative) and visual and somatosensory evoked responses tests (again negative). I have been seeing flashing lights on and off throughout my illness (starting in April) but didn't note down times or frequencies so I'm not really sure if they came in blocks or were constant. I did ask if an EEG would be helpful but the doctor said "you've been seeing them for so long now it probably isn't anything" (!!).

Anyway I had an episode a few nights ago, not sure how relevant it is; I'll be telling me neurologist about it when I see him in two weeks but I wanted to throw it out here in case it rang any bells, so I might be able to look up useful info prior to the appointment:

while I was on the computer I experienced some strange perceptual changes. Basically the monitor seemed to be VERY far away; I looked at the keyboard and it and my hands seemed hundreds of metres away. This then made me feel very tall, huge, almost as if I was stretched or a giant. Colours seemed normal, my vision seemed as sharp as normal, but I don't remember checking my peripheral vision or how wide my field of vision was.

My apparent height made me feel VERY sick.

If I closed my eyes, on reopening them my sight seemed fine, but within a couple of seconds it was back in "everything far away" mode.

I got up to be sick, but my balance as completely gone and I staggered/fell (loss of balance was my initial neurological problem).

After I was sick, I got back to my computer and my vision seemed to return to normal, but I then started smelling burning. (No-one else could smell anything.)

The perception/vision was strange for 5-10 minutes, and the burning smell for another 5-10 minutes after.

I felt both starving hungry and very nauseus for the rest of the night. When I went to bed I then slept for about 15 hours.

Any ideas or comments? Thanks!

[Porkette]

Hi Mac,
I will tell you that the burning smell that you noticed sounds like an aura sz. also known as a simple partial sz. People will smell strange odors that others can't. As far as the colors flashing back and forth in your eyes this also can be a aura sz. which sometimes can lead to a absence or complex partial sz. for many people. When you see your Dr. for your e.e.g. you should tell the Dr. to do a special e.e.g. on you where they will flash different color strobe lights one at a time, by doing this they will be able to tell if you are photosensitive where certain colors trigger sz. to the brain. It sounds like a lot of the activity in your brain is coming from the optical lobe. Here's wishing you well and May God Bless You!

Sue

[Guitarmom]

This sounds very suspicious for temporal lobe seizures to me. Having odd perception changes as well as vision changes are not uncommon with these types as well as the olfactory (smell) hallucinations can happen in seizures.

I would ask for the EEG now. Things can go on for a long time and be missed (happened for me!) I went 12 years with a misdiagnosis, being treated for the wrong thing.

I hope the doctor will listen!
Ginny

[shawn33]

Now this sounds pretty common to the temporal lobe seizures that I have! I have complex partial, and simple partial. I've had those for 16 years now, and just last year the grand mal started up if I don't take my meds. The lights you see can be either be only a simple partial seizure. Or it can be an aura/simple partial. The aura is ranked as a simple partial seizure since it's abnormal electrical activity in the brain that effects you, but you stay alert. An aura is telling you a stronger one is on the way. So then you could be getting hit by a complex partial, grand mal, etc.. But the simple partial seizure alone is one where you can have deja vu, see things, hear things that aren't there or affect your hearing for a few seconds.
As for the EEG, you can have the average one, or you can have the invasive EEG. That one is a major one where they drill holes into your skull, and pleace the wires to detect a seizure on your brain. That gives a 1000% more detailed and better EEG. But the basic one is the best and the safest. Then you can have a video EEG where during the EEG the video tape you to see how you act during a seizure when you have one. If you have any questions about your first neuro visit. After you go through the simple registration, you get a choice of things to click on. One of them is advice for your first neurology visit. I know this won't be your first, but it might show some good questions to ask him. Also you can type in questions and they respond in a day or two.
Sincerely
shawn33

Originally Posted by Mac33

Hi guys - I posted this over on the general form and it was suggested I paste it here too, to see if it means anything to any of you.

Brief medical history - I've been diagnosed with cerebellitis (inflamation of the cerebellum), and have assorted other neurological issues, which may or may not be related.

Tests I've had so far are CT scan a few months ago (negative), MRI in May or June (also negative) and visual and somatosensory evoked responses tests (again negative). I have been seeing flashing lights on and off throughout my illness (starting in April) but didn't note down times or frequencies so I'm not really sure if they came in blocks or were constant. I did ask if an EEG would be helpful but the doctor said "you've been seeing them for so long now it probably isn't anything" (!!).

Anyway I had an episode a few nights ago, not sure how relevant it is; I'll be telling me neurologist about it when I see him in two weeks but I wanted to throw it out here in case it rang any bells, so I might be able to look up useful info prior to the appointment:

while I was on the computer I experienced some strange perceptual changes. Basically the monitor seemed to be VERY far away; I looked at the keyboard and it and my hands seemed hundreds of metres away. This then made me feel very tall, huge, almost as if I was stretched or a giant. Colours seemed normal, my vision seemed as sharp as normal, but I don't remember checking my peripheral vision or how wide my field of vision was.

My apparent height made me feel VERY sick.

If I closed my eyes, on reopening them my sight seemed fine, but within a couple of seconds it was back in "everything far away" mode.

I got up to be sick, but my balance as completely gone and I staggered/fell (loss of balance was my initial neurological problem).

After I was sick, I got back to my computer and my vision seemed to return to normal, but I then started smelling burning. (No-one else could smell anything.)

The perception/vision was strange for 5-10 minutes, and the burning smell for another 5-10 minutes after.

I felt both starving hungry and very nauseus for the rest of the night. When I went to bed I then slept for about 15 hours.

Any ideas or comments? Thanks!

[southie]

I strongly recommend that you keep a diary, journal,
ledger, or something - and write down the date, time,
and when these things happen to you and what you
experienced (to the best of your knowledge and memory)
and if there are any witnesses, have them record what
they remember (lest there be any confusions or "I forget"),
and the more specific details there can be - can be of
tremendous assistance to any Neurologist or Epileptologist.

It will also let them know exactly how frequent you are
experiencing them, and giving them a generalized idea
of what time of the day/night you are having them the
most. And even more so it would be of even of tremendous
benefit if you recorded if you had some drinks or two
(alcohol), or what you ate, what you did, if you lacked
sleep (how much sleep did you get that 24 hour period?),
and don't be ashamed or shy about it. If you did illegal
drugs - some people do, like marijuana, and smoked it,
log it down - be honest, don't withhold anything back.

These Doctors are here to help you, not be against you!
So if you party-hearty the night before until 4:30 AM and
then then about 24 hours or so later you were smacked
with it, then so be it, record it. This will be all a major impact
and make a big difference on everything.

(And of special note - because this is a public posting and
everyone reads this - if you have a child, and is entering
into puberty, please log it as well and document such,
including activities that they have did and done. And for
women - this includes your menstrual cycles as well, log
them - every small bits and details do make a big difference
and an important key function in everything!)

Hope this posting helps you a lot and for a better future
ahead for you and develops a better rapport as well as
enlightenment and getting to the bottom line of everything!

[Mac33]

Thanks for the replies all - this post is about a month late because my memory is so bad I completely forgot about this forum, heh.

My memory only got jogged because I spent most of the last few hours strongly smelling a strange burning smell no-one else was aware of.

Anyway - I raised it with my doctor a little while ago, and he said it was "Probably a migraine and nothing to be worried about." Ahh well! In an ideal world I would like an EEG, but I don't even know that it would be helpful because, as far as I can tell, if I wasn't actually having an episode during the EEG it would come back negative anyway.

As for partying all night long and getting high on semi-legal drugs . . . I wish, lol. Unfortunately since my brain went on the fritz in April I need to sleep 12 hours a day to feel even close to alive, and Red Bull is the strongest substance I can abuse ;-)