hi there....never done this before so hope i'm doing it right!!

i'm due to go for a second neurology appt - the first time was nearly five years ago (was in my mid twenties) when they sent me the following day despite long waiting lists and had mri for vision loss but no headaches. i was eventually diagnosed as having "rare complicated migraine" and told strange things may happen but no clarification. well...many strange things have been happening which i intend to discuss with this new neurologist (even though it terrifies me that she'll think i'm losing my marbles). the trigger for this new appoinment was an attack which not only was prolonged (10hrs) whereas normally the visual problems last 30mins but also for the first time an incredibly severe headache which i nearly overdosed on strong pain meds (60mg codeine,tramadol,mefanamic acid 500mg and ibuprofen all within 4 hours to zero effect and then sumatriptan). the headache was most severe for the 10 hours both sides like brain freeze after eating ice cream too quickly not throbbing and on both sides and at the front not back
also over the last few years i have had the following:
buzzing in the ears
funny smells
pizza that tasted like paint
numbness in right forearm
forgetting the place where my husband proposed!! i have (had?) an excellent memory and we were driving through the village where we got engaged and my husband started to reminice i knew i SHOULD remember it but couldn't recall anything as to why the place was special
coloured blobs
seeing the air particles?
nightmares where i can FEEL a presence (demonistic) where usually something/someone wraps around my right arm and then jumps onto my face trying to bite me....sounds ridiculous but truly terrifying i can feel it happen!
days where i just cant seem to get motivated, really muzzy headed
lying in bed at night not sure if i'm asleep or not- imagining body parts (nothing rude....usually my forearm or lips) being zoomed in and disproportionately large....sounds really strange but that's the best way i can describe it
being in a conversation and suddenly realising that i cant seem to listen to the person..i can hear them but it's like there words are "going in one ear out the other" without any of the content being retained at all...then i start to panic because they will think i couldn't be bothered to listen and start trying harder to concentrate on the conversation but cant!!
sometimes words that i have been using all my life suddenly look completely wrong or unreal?? i keep checking the spelling and am certain the word exists but it looks "silly" ???

somebody mentioned partial seizures...that worries me because we live in a rural area and i cant afford to lose my driving licence as i have 2 young children. does anyone out there think this sounds familiar? i would be tempted not to mention the wierd symptoms in the appt to avoid any potential loss of my licence....dont want medication anyway as most things i can live with!

Hi, Lucyobee! Welcome to NeuroTalk!

You're doing fine!

Boy, that's an odd mix of symptoms and sensations, I'm afraid I don't know anything at all about this type of condition. It might help to check our headaches forum for similar experiences here: http://neurotalk.psychcentral.com/forum32.html

Hello Lucyobee an welcome to NeuroTalk from me as well.

You really have been through a rough time lately haven't you? I wish could say some wise words that would give you all the answers that you seek, but unfortunately I can't.

We do however have a great Headache Forum where you'll meet others in smilar situations to your own and I see you already have the link to that.

Here is the link to our Epilepsy Forum as well : http://neurotalk.psychcentral.com/forum11.html

May I also suggest the Medication Forum if you're concerned about any aspect of those that you've been taking. Here's the link to that one: http://neurotalk.psychcentral.com/forum72.html

Lucybee

Yes, they do sound a lot like partial seizures. But they also sound a lot
like you are having aura's which is also simple partial seizures. And honestly
you sound like that is the kind you are having if any almost completely.

The reason you need to mention this to the doctor is because if this is
true then she/he can help you get on the right medication and help get
them controlled. Because if you don't get them controlled they could
turn into more severe seizures, either complex partial seizures or the
ones that used to be called gran mal.

Now about the fact that you might not be able to drive. Its a toss up really,
because if its technically aura's and simple partial seizures, then its very
much possible the neuro will ask you to take a break from driving as much
as possible. But still allow you to drive after say a month or two, when you have seen how you will react to the medication. Reason being because you
aren't exactly having a altered conscious.

And that is what you are wanting to keep from happening. And if you don't
get this under control and they are seizures then that is what might happen.

But the good thing about what you are describing is that you are aware of
what is going on. Seem to have a good recollection of things that are happening, and can keep alert through them. I know how frightening it
can be, but it could honestly be worse.



Also there are a couple of forms of migraines and other things that cause some of these symptoms too. So its also possible, that your headaches are
connected.

Please also go to the epilepsy forum here.

Donna

hi

thanks a million for the advice....still not sure because my last visit with a neuro said it was migraine aura without headache and even though the majority of the symptoms have been happening with varying frequency over the years they are not affecting my life too much, i can cope with it most of the time. (generally keep it to myself though because people dont seem to understand when i try to explain). i really dont want to start medication and bring very real symptoms from side effects on myself when i don't feel that bad! and also even a temporary restriction on driving would have a huge effect!

Hi Lucy! Welcome to NeuroTalk!

Hello lucy and Welcome to NeuroTalk. Glad you found us, so please make yourself at home.

I sure can relate to most of what you are going through and it isn't any fun.
I have a lot of strange symptoms, most of which would make me sound a little on the crazy side. I have been labeled a drug seeker many times and I have suffered silently for many years.... Arm your self with data when you go into the doctor... Take a look at MAGNUS. There is a lot of useful info, and I always take new articles to the doctor supporting my thoughts and ideas.
Unfortunately, everyone is unique and what works for one doesn't always mean that it will work for another.
Don't give up! We all deserve to not be in pain.

Hello lucyobee and Welcome to NeuroTalk. Hope you make yourself at home here.