Sorry to hear you had a crap appointment Nikkinoo. Hang in there.
Jo
xx
Hugs nikki
sonia x
Hi Nikki x This is going to ba a bit of a long one - but bear with me!
When I was 13 I suddenly started to suffer badly with what I would call ‘classic’ migraines - I’d have what they call the aura - ie my vision would go for 20 mins - followed by the most excruciating headache ever and nausea - sometimes I’d go numb down the side and have pins & needles in my face and tongue. They were very scary and I would get them weekly until they just stopped when I was 20 - thank goodness!
3 years ago - aged 45 - when I had what I now believe to be a ‘relapse’ that lasted a few months - I started getting Acephalgic Migraines - sometimes 2 or 3 a day - basically these are ‘migraines’ without a headache!
It starts with a big blind spot to the right of my vision - in both eyes - I literally can only see half of anything. It’s at this point I have to lie down before I fall down! With the blindness comes a small shimmering spot that slowly growns into a full on shimmering zig zag ‘arc’ that grows until it fills my whole vision. I’m totally blind during these attacks and they always last dead on 30 minutes. I sometimes get a ‘buzzing’ in my face and tongue and numb hand. I’m then left with a horrible washed out feeling for days.
16 years ago after a car crash I had an EEG - the guy who was doing it suddenly said - '“Ah ha!! you get migraines!!” I said I hadn’t had one for many years - how do you know? - he then explained that there is a particular abnormal ‘wave’ that when present always indicates a migraine sufferer - not all migraine sufferers have it but the ones who suffer the ‘visual auras’ usually do.
What was interesting was that he said that it is right next to the abnormal ‘waves’ they use to diagnose epilepsy - and can sometimes lead to a misdiagnosis.
Getting to the point - I have asked my GP, opthalmologist & the neurologist if they think my illness is related to migraines. They have said emphatically and absolutely NO! Yes there are migraines that can last several days - weeks even - causing neurological symptoms - but when the symptoms of numbness, pins & needles, fatigue, heat intolerance, muscle spasms, fasciculations, double vision etc etc etc go on for more than a day or two - they can NOT be attributed to migraine!!
They said that it’s more likely my ‘illness’ is neurological and is ‘triggering’ my migraines for me - not the other way around!
I think what I’m getting at is that ‘proper’ migraines are definitely neurological and can be very disabling - a lot of people - and doctors too (!) describe/diagnose many headaches with nausea as ‘migraine’ - the word is very much misused and they haven’t got a clue what a ‘real’ migraine is like!!!
For your neurologist to diagnose/dismiss you with migraine is very wrong! You need to see that 3rd one and demand MRI’s, EEG - a lumbar puncture if need be - etc etc etc xx
Only then would I accept the rather flippant ‘it’s migraine’ - and that’s from someone who knows what migraines can really do to you neurologically!!
Hope you get there soon lovely xxxxjenxxxx
Wow you are all so lovely. I have had an eye test and it was fine. I used to get migraines that consisted of tunnel vision, flashing lights, vomiting then Headache at the end. They stopped as soon as I started lamotrigine, my neuro said they sometimes prescribe eppy meds for people with severe migraine. Some of my symptoms even yesterday’s neuro couldn’t blame on migraine he just said it was my age. When I went in I was 40 when I came out I was 96!! My eppy nurse has just rung and she wasn’t impressed. She is going to talk to my decent neuro and also the migraine specialist nurse to see if they agree. Thank you all so much for the support Xxx
Hi nikkinakkinoo, Glad your eppy nurse is on your side. I hope she can get something sorted for you. Teresa xx
Hi Nikki, my first symptoms were half my head, face including half my tongue all went numb. I was taken into hospital as they thought I had had a stroke. He sounded an absolute waste of space I just don’t know what to suggest. Is there another hospital where you can be referred to, even if it means travelling a bit further it might be worth enquiring. Sorry I can’t be much help. Karen x
I’m hoping I can get to see the other neuro, there is reviews for him online and he sounds great. One of the reasons my nurse was annoyed was because he blamed my age and she is older than me lol. If I don’t get any joy I’m going to ask to be refered to a different hospital. It’s like banging your head on a brick wall!