Dizziness – feel drunk, or like I’m on a boat
Nausea (take Stemetil if it gets too bad)
Headache in temples and/or sinuses (use ice packs/4head stick for relief)
Vertigo proper – only a sweeping feeling, I never get spinny dizziness for long
IBS-D – this was present before migraines too
Full ears – deafness, especially just after standing up
Noises in ears – last for a few seconds
Stiff sore neck
Leg issues – really hard walking (feels like walking through deep water), or don’t feel like they’re mine – use a stick when this happens
Crushing inability to make decisions – feels like brain has just shut down
Numb fingers – usually in bed
Heavy feeling in head – feels thick
Head pulling (feel like I’m veering to one side when walking) – occasional, more a symptom in 2015
Everything just becomes really hard – general difficulty doing everything
Eyes ‘popping’ – feels like a little pressure, then ‘pops’ away – new symptom, since July 2017
Panic in chest – like a panic attack, without the actual panic
General weird feeling
End of July 2015 – onset of condition
Sept 2015 – off work sick for 3 weeks. Private consultant diagnoses Meniere’s Disease – start Betahistine. Back to work shortly after as symptoms improve enough to cope
January 2016 – NHS (Freeman ENT) diagnose Migraine Associated Dizziness instead of MD – advised to start trigger avoidance diet (with an extremely limited list of things to avoid given to me….). Still on Betahistine.
February 2016 – anxiety and depression from dealing with condition gets too much – GP prescribes Citalopram.
Symptoms disappear – I think it’s the trigger avoidance diet, never thinking about the Citalopram.
March 2016 – ENT consultation – told to wean off Betahistine, consultant doesn’t tell me the Citalopram is the reason I’m feeling better. Maybe doesn’t realise. Tells me foods will trigger me within half an hour, so I believe I’m free to eat everything again (apart from caffeine, which does trigger me quickly).
June 2016 – have to come off Citalopram as side effects are too great. Experience my first ‘proper’ migraine as soon as I come off them, off work for 3 days. Horrific experience. Not expecting it, as I didn’t realise Citalopram can be a prophylactic medication.
Locum GP prescribes Propranolol, reluctant to discuss ‘specialist medication’ as he put it. Propranolol helps a bit, but not enough.
July 2016 – GP prescribes Venlafaxine alongside Propranolol when I ask to be referred to Neurology.
I’m happy as the Venlafaxine stops symptoms. Dosage is increased over the next 6 months as and when symptoms creep back in.
November 2016 – ENT consultation – I’m discharged as I’m happy on medication at that time.
April 2017 – I change from Propranolol to Atenolol, due to side effects (mainly excessive sweating – I know it is probably the Venlafaxine, but also know it’s the main reason I’m not having migraines so reluctant to stop it at that time).
May 2017 – I start to wean off Venlafaxine as side effects become too great to bear.
June 2017 – Horrific withdrawal from Venlafaxine when I finally come off it, begins an 8 week stint off sick from work. Dizziness and worst symptoms back. Relentless.
GP refers to Neurology.
Start strict trigger avoidance diet using a recently published book with a comprehensive list of foods.
July 2017 - Feel well enough to go back to work, phased return over 4 weeks.
Come off Atenolol – feel big revolt against medications due to side effects. GP says I’m sensitive to medication.
To present – Working full time again. Dizziness present in one degree or another everyday, with other symptoms creeping in if trigger foods eaten, or try to do too much. Very wearing, but trying really hard to cope. I’m very tired, want life back.
Magnesium 400mg twice a day
Feverfew 380mg twice a day
Lifestyle/workplace changes since June 2017:
Want to exercise – too tired, struggling
Blue light filters on phone and computer at work.
Moved desk at work – away from busyness, overhead light removed, beside window. They’re monitoring my stress. Occupational Health very supportive.
Triggers I’ve identified:
Sensitive to loud noises
Too much stimulation - open plan office at work, or Metro Centre – lights, noise, movement, computers, patterns, lots of people
Doing too much – I need a lot of down time, e.g. at least one day a weekend resting in the house
I’m assuming I have food triggers, but not tested yet since started migraine diet – have eaten a few trigger foods, infrequently, sometimes feel hungover after them
Side effects from prescribed medication:
Propranolol & Atenolol - even more fatigue than normal, weight gain
Citalopram – anxiety dreams and nightmares every night (follow me round the next day, replay in my mind weeks later), major dulling of emotions, occasional insomnia
Venlafaxine – excessive sweating, dulling of emotions, vivid dreams (remember them for weeks later), constipation, disordered eating
May or may not be relevant – 6 week period of 'labyrinthitis' from April 2012. Very similar to the beginning of this in 2015.