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 lucy,
What you are describing sounds like an aura seizure also known as a simple partial sz. whrere you smell different odours which aren't there and then the simple partial sz. may be leading into a complex partial sz. where you see different colors in your eyes, have a wicked migraine headache and often the short term memory goes down hill over time either do the the seizure meds a person takes or because the hippocampus in the brain is beginning to shrink. This is what happened to me and my neurosurgeon removed the right hippocampus of my brain. Check out this website for more info.
Be sure and write down each time this happens on a calender along with a discription by doing this the neuro may see a pattern in the time of day/night you have any sz. and what days of the month.
http://www.emedicine.com/neuro/index.shtml#seizures

www.epilepsy.com

Here's wishing you well and May God Bless You!

Sue

thanks sue


the surgery sounds scary! am still hoping it will be diagnosed as migraine aura!! fingers crossed!

Hi lucy - I was diagnosed with epilepsy (mostly complex partial seizures) when I was 46/47 years old.
I went through lots and lots of the "weird" things you are going through now and I understand just how awful it can be.
I remember sitting in the back seat of a moving car, watching my right arm turn neon blue, growing longer, longer and longer, pushing the windshield out into space. aaaaaaggggggghhhhh. I just sat and watched it in stunned silence and horror.
I remember the smells ....... body smells that I thought were coming from me ---- hideous sickening smells.
I remember thinking I was being hung by my hundre ......
Now I'm bawling again - and this was years ago.
Epilepsy medications turned me into enough of a zombie that I lost those auras and I just 'blacked out' during my seizures.
BUT -- all of those seizures lasted just 30 -45 - 60 seconds.....not hours like yours. (The migraines last for hours) It did take maybe 10-15 minutes for everything to 'clear-up' after each seizure.

As it turned out, a tumor was causing my epilepsy and it was removed in 2006 and because the seizures continued I had more surgery May 18,2007 and I haven't had a seizure since then.
I hope and think Sue will keep talking -- she's the dear, smart person to listen to. Bless her heart.

Hi Lucy,
One thing I forgot to mention is that a change in the hormones could be causing all of the problems for you. When I went through my change I had a lot more sz. than usual but that's because the estrogen level went up at certain times of the month and estrogen can cause more excitment in the nervous system. While the estrogen level was up the progesterone level was low and progesterone helps calm the nerves. Take note if all these possible sz. are happening a week to 10 days before your monthly cycle and then when you go through ovulation because that what can trigger sz. for many women. These sz. are known as cateminal sz.
As far as the surgery it helped reduce my sz. from an average of 300 sz. a yr. to 108 sz. last yr. I had surgery done twice. The first time it was a video e.e.g. where the put 7 depth electrodes directly on my brain to pinpoint the area of my brain that was triggering sz. and the 2nd surgery was ultra sound surgery where I had to be awake for most of the sugery so they could test me doing an e.e.g., having me read index cards, and pricking me with a pin. All this had to be done to make sure I didn't lose my sight or become paralyzed. Take my word you will get the best help going to an Epilepsy Center and seeing and Epileptologist-a Dr. who specializes in Epilepsy. I've found that an Epileptologist is way ahead of any neuro I ever saw and they have had me on the least amount of meds. Here's wishing you well and May God Bless You!

Sue

P.S. Wren has a heart of gold and has been a great help to others here.

hi wren and sue


thanks again for the replies, i really appreciate it!

you both seem to think that my symptoms are definitely seizures , are you sure because i have seen some of these symptoms described on migraine aura foundation website and my first diagnosis was that it was complicated migraine. i came onto this forum because someone mentioned that there was a type of epilepsy that resembled migraine aura but i HAVE NOT BEEN DIAGNOSED WITH EPILEPSY AT ALL!! yet and dont want to be, you all seem to suffer greatly both with the condition and treatments necessary to control it. it doesn't seem to be related to the time of the month but strong light and having an argument definitely triggers it! i dont have these sympotms all the time, might have 2-3 a month then nothing for months.

Hi Lucy,
Before I started to have sz. I started having wicked migraine headaches. There is often a contection between migraines and epilepsy. You mentioned that certain colors can cause the problem. This happened to me and I found out that I was photosensitive which means certain colors can trigger sz. for a person when they are photosensitive. I found florescent green, amber, and bright white the 3 main colors that caused me to have a sz.
Arguments can lead to stress and stress can lead to sz. for people. The 2 main things that can trigger sz. the most is stress and lack of sleep. Here' are the main things that can cause epilepsy:
inherited from family genes, trauma, lack of oxygen, a bad scare, tramatic brain injury, drug or alcohol abuse, or a bad blow to the head. Brain tumors can also cause sz. for people. Sometimes video games have also.
My advice is for you to see a neuro and take it from there. Here's wishing you well and May God Bless You!

Sue

again many thanks!

again many thanks for the replies, will see neuro and maybe come back when i have some answers

I am glad you will see a neuro!! I have both complex migraines as well as partial seizures. I do not have the hallucinations of the demons etc, but I do have some of the things you mentioned. When I began taking Topamax for my severe migraines, some of the odd things I had for years started to come under control I had already planned on seeing a neurologist to have an EEG because so many things that I suspected were not part of my migraines needed testing. (My son has partial seizures and some things were getting alarmingly like his) I could wake in the morning and BARELY function at times. I could go the to store and need my kids to help guide me around the store in utter confusions SOMETIMES> the scariest part for me on those days was that I had DRIVEN them there. I had a severe numbness on my leftside on waking some days that went from my left temple, my face, mouth, down my left side that made me feel electrified, in pain, agitated and SO EXHAUSTED all day....After I began going up to 200 mg of Topamax, a very high dose for migraines this was tamed some and I actually had this start while I was awake and I had it start and spread from the left temple down my face, then in a stripe down my left arm into my left leg. It was a seizure...it was terrifying to have it during the day and know what was going on...(Having read so much about seizures, being an epilepsy educator for the epilepsy foundation even....I KNEW....) I was in the airport, traveling alone, my EEG had been 2 weeks prior but I did not have results yet....The pain and numbness was less intensebecause of the medication, but sleep deprivation from the trip had brought it on.

Before getting to my current doses my seizures could be long like yours, my migraines and seizures can be similar since they run along the same pathways. My neuro tells me how they can be overlapping.

the Best site i have found is to read
Emedicine migraine variants.

Once on medication it was easier to tell between the two and my seizures are short even when my migraines are long.

I hope you figure this out soon!
GInny