Migraine Awareness Month #11: ‘Say what’

” It’s all in your head – pull yourself together”

Today’s bloggers Question for Migraine Awareness Month is:  What’s the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances?  

Knowing what I know now – I know I was born with Migraine… and whilst I had a formal diagnosis at 13 no-one ever told me you can go chronic… then 6 years ago following a c section for my twins I experienced a haemorrhage; which resulted in a near death experience and ended in a massive migraine stroke…with my left side totally weak, dribbling and with slurry speak… this event turned me chronic…. I was left in a constant migraine 24/7 at a scale 7 for over 3 years (and even today I am not totally free)
In those early days of total confusion and brain fog; I could not think straight at all  – I recall standing on the bread isle knowing we needed bread – but which one – there was so many – my then 5yr old saved the day………… I just needed someone to help me and not a 5 yr old
I had developed persistent aura, where I could see snow, squiggles and what I call Vaseline images 24/7 – I had a constant numbness in my left cheek, weakness in my left side and pain in my head …I lost words and could not explain myself clear…I could not read and had lost the ability to stay asleep…
I know now I had:
  • Alice in Wonderland
  • Depersonalisation
  • Derealisation
  • Auditory symptoms – wind in ears and ringing
  • Dreaming disturbance
  • Hallucination of coldness
  • Dysphasic aura – speech and/or language symptoms
  • Anomic aphasia – ‘loss of a word’,
  • Reading disturbances
  • Writing disturbances
  • Autokinesis – movement of stationary objects
  • Corona phenomenon – light round an object.
  • Visual – zig zags, floater, soft focus, snow
  • Mosaic illusion
 ………. I was the mother of twins in constant migraine…. I needed help…..
The doctors at the hospital diagnosed a stroke and I was sent to a local private Neurologist….. who I have to say at the first meeting seemed to know what he was talking about and he set to work arranging test, after test, after test……… MRI, ECG, PFO, Blood test after test  – even genetic tests….
The diagnosis  (even though the MRI was clear) :
” its a stroke and give it 6 months you will get better”
6 months turned into 18 months and I was no better at all – back to said Neurologist – who sat there looking at his now exhausted list of tests and declared
” It’s all in your head – pull yourself together”   !!!!!!!!!!!!!!!!
I was left a wreak of tears, confusion and helplessness…………..Thankfully my husband did not agree with said Nero……. and we went to see my GP who arranged for me to see another Neurologist now up in London…… a tortuous trip to make,  only to be given the same diagnosis:
“It’s a stroke – give it 6 months and you’ll get better”
The fact that we had already given it three lots of 6 mths did not seem to register. Well the new 6 mths turned in to a year and I was no better… if anything worse… My life had stopped, I had given up planning,  I was not in that take it one day at a time – I was in a take it one hour at a time…….
Now in daily tears and hating those ‘give it 6mths’ words I hit a low (which is another story) – I finally visited my GP for what seemed the hundredth time and broke down ‘I cannot go like this’
She agreed that if this had been a stroke I would have made progress by now and she was the one who suspected Migraine – so I finally agreed to see yet another Neurologist; my faith in which was low – BUT this time I wanted to see the best.
I left the surgery that day and made 3 phone calls – I was blessed that day  – firstly I contacted Migraine Action where I had a wonderful conversation with the then director Lee a wonderful sympathetic lady who gave me the name of a Professor in London – but with the warning that getting in to see him was a long hard wait…………my second call was to my GP  – again another amazing lady –  who called the prof direct and then sent him the referral letter  – my third was to my private medical insurance company who agreed to pay for the consultation – within 5 days I was sat once again in London with my now third Neurologist.
Not an easy meeting, as I was at a scale 9 at the time and struggling to find the words and explain myself – which compounded as he did not seem to be listening and kept timing me out…………… yep the full American T shape hands and time out comment………. the questions where hard…….. ‘When did I have my first headache – ever’ – How the hell do I know I was a child!………….
The fleeting thoughts I was going to get the magical words ‘give it 6mths’ again – brought me to my knees and tears flowed hard………….  If he says 6mths I was going to scream…….BUT
He sat back in the chair, put his hands together and said  those words…….
‘You have chronic hemiplegic migraine with persistent aura’ 
The moral of this story – NOT ALL NEUROLOGISTS ARE THE SAME……….. If you are starting this journey make sure you get to see a neurologist with migraine or headache as a specialist or research subject – look for those who have written papers on the subject….ask for recommendations and if you do not agree with what they say……….. go see another one…… keep pushing…….
Further reading

#NMAM and #NMAMBC

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.

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