Neurology changed my diagnosis...! Sensory overload, and the keto diet

Specific Illnesses & Conditions VM/MAV
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Hi all :slight_smile:

Just thought I’d pop in to pass on what’s been happening with my VM journey!

My first appointment with Neurology was a few weeks ago - he spent a good 45 minutes listening to my incredibly long list of symptoms (I’ll post them separately, it might help anyone who is similar to me - I know I’ve gained a lot of help from just reading other people’s journeys, regardless of whether our outcomes were the same or not), and testing my reflexes etc., then he said… “I don’t think it’s migraines. I think it’s sensory overload.”

Once this sank in, and I got over the change in diagnosis again, it made total sense to me. And I totally believe him.

I know I’m a HSP (Highly Sensitive Person) so I don’t know why it never occurred to me that the last 2 years of symptoms have been purely because my brain is sensitive and isn’t filtering out the stimuli like it should. I responded to Citalopram and Venlafaxine because they dulled my nervous system, enabling me to function in the big wide world. However, I had awful side effects, because of my sensitive nervous system. Coming off Venlafaxine is one of the hardest things I’ve ever gone through. I didn’t respond as I’d hoped to the migraine diet, and it makes sense now that that’s because it wasn’t right for my body.

He recommended the keto diet, which I would recommend anyone with migraines also looks into, as it’s therapeutic for migraines and epilepsy, along with other conditions and diseases (diabetes, for example). Running your body on fat instead of glucose apparently calms your nervous system. It’s basically living gluten-, processed food-, and sugar-free, and you get your energy from mostly fat. I’ve been eating keto for 2 weeks now, and I can actually feel my body starting to let me spend more time in the outside world, with all of its noise and busyness and triggers. I need less down time. I have more energy, and more willingness to engage with things. I want to spend time cooking when I get in from work, instead of hiding in my armchair, recuperating.

If you don’t know, keto is low carb, high fat, medium protein (it’s not Atkins - on Atkins, you can eat lots of protein, but on keto you have to watch you don’t eat too much, as your liver can turn excess protein into glucose, which knocks you out of ketosis). Research it, see what you think! My Neurologist said that he’s certain I don’t have migraines, but if I did then the keto diet would be beneficial anyway. I go back in 6 months to update him.

So, no more drugs for me (which I’m OVER THE MOON with as I couldn’t face the thought of trying another drug and putting up with its side effects), I’m going to live keto-adapted and see what happens.

Tracey x

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Constant/frequent symptoms:
Dizziness – feel drunk, or like I’m on a boat
Disequilibrium
Lose balance
Nausea (take Stemetil if it gets too bad)
Fatigue
Headache in temples and/or sinuses (use ice packs/4head stick for relief)
Brain fog
Memory issues
Aphasia
Vertigo proper – only a sweeping feeling, I never get spinny dizziness for long
Eye floaters
IBS-D – this was present before migraines too

Episodic symptoms:
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 scalp
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
Stuffy sinuses
Blurry eyes
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

Timeline:
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.

Taking:
Magnesium 400mg twice a day
Feverfew 380mg twice a day

Lifestyle/workplace changes since June 2017:

Migraine diet
Hydration
Good sleep
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:
Caffeine
Sensitive to loud noises
Poor sleep
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
Stress
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.

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I’m SO GLAD you brought up the keto diet. I’ve been on it for 5 days and I’m a TOTAL mess. After a great few months of stability (and lots of sugar!) I wanted to slim back down. So I went on the keto diet but I think I went too fast. I had my first real vertigo attack just now and came on here to ASK SPECIFICALLY IF ANYONE HAD TRIED THE KETO DIET! Amazing.

So I just ate a big fat grilled cheese sandwich, had a gulp of grapefruit juice and hope the system calms the F down after giving my system a little sugar.

I would like to stay on a modified keto diet but I have to ease into it slowly. I also wonder if stevia has any impact on my vertigo. I was really having a ton of sugar this summer when I was feeling better (after 6 months of not eating any of my favorite things and going off wine completely :frowning: ).

Anyway, thanks for sharing that advice - the keto diet seems like a great idea on many fronts (anti-cancer, etc.) but if you do, go slowly!

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