migraine

Vestibular Migraines – The key steps I took to…

It’s been 4 years now since this all started, and I can finally say I am around 95%. I have not had a migraine in 2 months, I am not on medication, and I go out every weekend to socialise and go dancing etc.

I STILL have triggers, but it is nowhere near as bad as when this all started. My main triggers now are extreme stress – I work in schools and the dizziness comes back after a stressful week, and goes again when I calm down!

So here are a few things I find were vital on my journey to recovery. When I say recovery, I will ALWAYS have a migraine brain but at least I am functioning nearly normally on a daily basis!

If you want to know my full story and how this came about, click here.

Being able to snorkel every day and swim again 3 years later on holiday!

WALKING – At first I was bedridden on and off for at least two months. It was so severe my partner had to leave food by my bed and on some days I didn’t know how I would walk to the bathroom so I would crawl.

I also had to crawl to get up the stairs and it took so much out of me I had to sleep after. I couldn’t read or watch T.V. I would just lay my head down and have spin-outs in the middle of the night and every time I opened my eyes I just prayed to god that I would see clearly again but everything was still moving and it remained like this for 2 years – although on a lesser level as I started walking.

So how did I do it? On the days I was not in bed, my partner would finish work, and hold me up and we would walk around the block of flats where we lived. He did this for weeks at a time!

With time I got to the stage where every day I would walk laps around my living room until I got tired on my own, then rest. I then would take it further and walk a few meters to the end of the garden, and rest. I built up this routine to involve more laps as the weeks went on until I would walk outside the house and cross the small road to our local shop.

I used to say if I could make it to the shop, I could get an afternoon treat for myself like a chocolate bar. I was so dizzy I had to hold onto the brick walls to get there.

Once again, I continued this until I would walk further, around my block on a 5 minute walk. I live in Hammersmith and eventually, I got to the stage where I could walk up the busy high street for 10 minutes to reach a local coffee shop and sit down and rest up again.

YASSS! Fist long haul holiday away after a fear of flying and having a dizzy attack! I actually had hypnotherapy to help me fly again.

I found the biggest reason for me getting better was by testing my vestibular system. I saw myself as a child all over again having to learn to walk, see etc. I did try multiple medications in the early days but I was just soooooooo dizzy, nothing seemed to work.

I finally managed to make it to 15 minute walks before I would feel exhausted and dizzy, jelly legs etc. This was around the 1 year mark.

Note: Please note I had to rest when I was really exhausted for a few days if needed, and then I would carry on walking again. It’s s fine balance between pushing yourself too much or doing too little to test my vestibular system and being mainly housebound.

Once I got THIS far, I went onto vestibular exercises.

Taking a paddleboarding lesson 3 years into my illness!

VESTIBULAR EXERCISES – These exercises vary for everyone but click here to see the exercises I used to do. I was absolutely exhausted after trying these exercises and often felt DIZZIER! But over the months, I found I could ficus a little better and my balance improved. Once I realised they were working, I went to hospital once a week with a vestibular therapist that gave me exercises to try at home. I would then go back a week later and we would time how long I felt dizzy after doing a particular exercise. I found that over time, I felt dizzy less and less and then I could stop going.

MEDICATION – As mentioned, in the early days no meds seemed to work. The only thing I took if I went out anywhere for appointments etc was Stemetil which helped to take the edge of the dizziness a little.

I moved onto Flunarizine a calcium channel blocker 3 years later which seemed to help with my vision, but by this time I was already around 80% better without meds and I found this medication gave me low moods so I came off.

I am definitely not anti-meds and will look into the med route in the future if I find my full-time job working with children is getting too much and I need to take something as the dizziness comes back.

I also still have problems on and off with sleep and I need a good 8 hours a day or I will get burnt out. I take Zopiclone which is a sleeping medication on the nights where I can’t sleep and have to be up at 7 for work.

3 years later and I managed to surf again!

ACCEPTANCE – This was the hardest for me. Luckily in a way my dad was an ex marine and even though he had passed when I got this illness, I knew he would want me to fight it and push on. But all that fighting does nothing at all if you don’t accept it in the first place.

Rather than realise, Ok, I have this now, It will be here for life and I will need to take life a little easier and manage it, I at times pushed myself like I was ‘normal’ but this was my NEW normal and I had to get used to it.

Once I finally accepted, this is what I have now……. at the 2 year mark, I came on leaps and bounds as I started to create a treatment plan to get through it. I was no longer trying to carry on like my OLD self! I also had counselling to get me through this stage as I became very depressed and at times no longer wanted to be here. Click here to hear me talking about low moods.

Click here to see a video on me talking about learning acceptance with this condition.

I’m back out clubbing every weekend!

GETTING ON WITH IT – In the early days, months, years I was a google fanatic. I would google until my eyes and dizziness couldn’t take anymore to find out HOW I could get better.

I was OBSESSED with my condition and how DIZZY I was feeling that morning. I found this made me feel WORSE! After a year or so I thought, fuck it. Just GET ON WITH IT! This is NOT going to stop me and take over my life anymore, dictate when I can see my friends, how far I can walk, if I can see properly again. I used the anger I had to march to the supermarket dizzy as hell and go food shopping. I was NOT going to let this illness dictate my life anymore!

I found that once I stopped obsessively thinking, ‘How dizzy am I today’ upon waking and just ‘getting on with it’ as best I could, I also started to recover faster.

Weekend in Bournemouth for my best friends wedding and clubbing afterwards : )

Please note that EVERYONE is different, what might work for me may not work for you, but overall accepting this is your condition and realising the old you has gone but there is STILL a new you out there that can STILL have a life surrounded by family & friends can be vital in your first step to recovery and being kinder to yourself.

Through this I had to give up my university degree, I lost my job and the house I was renting, I even lost my 5 year relationship to the man I thought I would marry and friends too…… BUT…. I have moved to a new area, started to work again, made a ton of new friends, have started dating again and have an active and fin social life so HAVE HOPE!!!!!

Click here for more vestibular migraine videos

Healing

Vestibular Migraines – Signs I was Getting Better

Hello all, so I covered how I was starting to get better after suffering from chronic vestibular migraines for nearly 3 years but I didn’t cover HOW I knew I was getting better and had quite a few questions on it so here we go!

As you know with this illness, you are constantly taking a few steps forward, and then what seems like ten back. Here were the signs I noticed that I was starting to recover. Might I add this was before I even STARTED taking my preventative!

 

I could walk further – Previously I could only walk for 15 minutes before the dizziness became overwhelming and I had to go home and either sleep for an hour or have complete rest on the sofa, not even watching T.V as my brain was so fried from all the vestibular info it was trying to take in!

As time went on, even though I took BIG steps back where I was bedridden again, I noticed that even after these MASSIVE attacks, I could start to walk for 20 minutes a day before I felt dizzy, then 30 minutes a day and so on.

Vision Improvements – It’s funny but I did not see my migraines decrease when my overall dizziness and vestibular symptoms decreased, it was only the preventative Flunarizine that literally stopped my migraines and I then would only have 1 break through a month, usually around that time ladies. ( Note that Flunarizine is usually a last resort and I need to be monitored cloesly on it as it can have heavy side effects.)

But what I did start to notice was I would wake up and see really clearly that day before relapsing and it being terrible again. BUT….. as time went on I noticed I had more days where I could see almost clearly until it had completely switched around and I had more GOOD days visually than I did bad days.

Exercise Tolerance Improved – Previously if I so much as tried to lift light weights or swim I was confined to my house for at least 4- 6 days afterward from the sheer exhaustion of it. In fact, I stopped all exercise COMPLETELY for at least a year before I took it up again and then I started to notice that I needed less recovery time.

I am now at the stage where I can lift light weights 5 days a week!

Crossing Roads – Roads were an absolute NIGHTMARE! I live in Hammersmith London next to one of the busiest roads in London and trying to cross 3 lanes of traffic on my own was near impossible! The cars would always look closer than they really were and it made it dangerous at times too.

I finally realized I was getting better when a bus driving past me out of the corner of my eye would not give me a dizzy attack or a train going past me would not give me a spin out where I had to hold on to a wall.

Gradually, by confronting these situations every day I also realized the crowds of people affected me less and now I can cross roads or be in Oxford street for at least an hour before I start to get slightly dizzy. Before I couldn’t even stand in an overcrowded place for a minute without feeling sick! 

Loud Noises – I avoided bars like the plague. Just hearing music on a speaker behind me would make me feel very dizzy and sick and how do you tell people you feel dizzy because of MUSIC? How are they seriously meant to understand THAT? 

Luckly overtime I got used to being in supermarkets and shopping centres playing music until now I am at the point where I can go into a restaurant with a speaker playing music above my heard and I can HANDLE it!

I even wne to a live gig and I was fine and stood up the whole hour last week too.

Lights – This was perhaps my WORST symptom! Strip lighting in offices and supermarkets was the WORST for years! and I even had to wear sunglasses out in the middle of winter just to do my shopping.

I also could not use a computer for more than an hour without going to bed with extreme exhaustion until I got computer glasses and built up my resistance.

Once again, by confronting these difficult situations every day rather than avoid them, I noticed my tolerance got better until I could shop in any supermarket for at least an hour or go clothes shopping before I started to feel slightly dizzy.

Last month I managed to actually go to 2 different nightclubs and dance for an hour too!

Lessons Learnt 

  • Even though I may get MASSIVE relapses, as long as OVERALL since this all started I can see a general improvement then I AM healing!
  • Be good to yourself on the bad days. Cry it out if you need to and have a good sleep. In fact get as much rest as possible and be kind to yourself. 
  • Communicate as clearly as possible when you get these attacks so family & friends will understand how bad these attacks really are. I ended up saying when I get an attack, I can’t walk, stand, see well or speak properly…… they soon shut up then about me not being able to stick to certain commitments  I had made! 
  • Seek a counsellor! It’s highly likely your friends & family will NOT understand what we go through as we look FINE! We also need support as we need to learn to accept we are SICK and only then I found could I get better.
  • STOP fighting it! I did for so long and actually made myself WORSE! Before this I traveled, surfed and was a still a bit of a party animal lol and I tried to make myself believe I was FINE and it would just go in a week. I was actually prolonging my illness by not taking charge of it and sorting out the problem and with that, once again acceptance was the key stage to help me fight this and seek out a good neuro and preventative.

Ok any questions guys just comment below.

 

Sian x x 

 

 

 

migraine

How I Recovered From Vestibular Migraines

I’ve suffered from vestibular migraines for nearly 3 years now, and although I did have migraines when I was a teen I never had them as severely! 

When I say ‘recovered’ I will always have a sensitive migraine brain and have issues when over using my laptop but I mean recovery as in nearly got back to normal.

My Story

Just over 2 years ago, after an extremely stressful period at work, I caught a virus. I just shook it off assuming it was a cold but on my way out to lunch, the ground felt like it was moving and I became very dizzy and nauseous.

Things started to take on a dream-like quality and I felt I wasn’t really present. I had to hold onto a wall to get back to the office and then the symptoms died down only to return a few days later but on a daily basis 24/7.

The doctors believed it was Labyrinthitis and it would clear up in a few weeks, but 7 weeks later I was STILL extremely dizzy and unable to go back into work.

My symptoms included:

  • Anxiety
  • Depression
  • Sensitivity to lights
  • Sensitivity to loud noises
  • Eye pain
  • Sinus Pain
  • Neck pain
  • Jelly Legs
  • Exhaustion
  • Tight Chestedness
  • Heart Palpitations
  • Problems speaking
  • Brain Fog
  • Feeling of vertigo

It took around a year and a few ENT appointments until I was sent to a neurologist that diagnosed me with vestibular migraines – Dr Barry Seemungal in Charring Cross Hospital London.

In all, I visited around 11 doctors and specialists. Each gave me their personal opinion which ranged from Labyrinthitis, to anxiety, depression to Migraines.

I was bed ridden for the first few months and it took around two years to walk properly again and longer to see properly. I was dizzy everyday for at least 2.5 years and often I was so depressed I didn’t want to carry on.

The BFG diving lol. I managed to snorkel every day a few months ago, and I was completely bedridden years earlier. There IS hope!

I fought against the anxiety diagnosis as I knew it only started once my balance issues began and it seemed like the easy way out for a lot of doctors that couldn’t admit to themselves they just didn’t have enough understanding of my condition.

Treatments I’ve tried:

  • B12 Vitamins – They definitely gave me back more energy
  • 5- HTP – I found this greatly improved my anxiety and insomnia
  • Acupuncture – This did actually work and settled my dizzy symptoms down for a few days but not completely and it was expensive to keep up with it. It also helped with my nausea and digestion.
  • Natural Healing – Hands on healing definitely helped with the anxiety and I would get a better night’s sleep but although it helped lessen my symptoms, like acupuncture it didn’t clear it up completely.
  • Physiotherapy – My trigger seems to be my neck and I often wonder if this resulted from an old whiplash surgery. Physio helps reduce the neck pain and lessens my migraine frequency.
  • Medication – In my case, I happen to be very med sensitive so medication such as epilepsy drugs, nortriptyline, stemetil, topiramate, amitriptyline, sodium Valproate, propranolol just made me feel like a complete zombie and I could not function day to day.

No matter WHAT I did or how much make-up I put on I looked CONSTANTLY shattered! I was tired of people telling me how ‘sick’ I looked even on a good day! In the end, after at least 6 months of research, I got under eye fillers done. Mentally, it made a massive difference to look in the mirror and not see a sick face looking back at me!

Note: Stemitil was my go to take the edge of the dizziness on bad days but it wore off after a few hours and didn’t get rid of the migraines.

My vestibular disorder has impacted my life massively.

Friends – You don’t see them as much. In time, they stop inviting you to things, not out of spite, but realizing you are limited when it comes to traveling on trains, busy bars, bright lights and loud music.

You LOOK Fine – I can scrub up pretty well each morning : ) But underneath I still can’t walk more than 20 minutes before I feel the need to go home as the floor is moving, or my legs are like jelly. You also end up having anxiety just trying to do normal everyday things, like get on the Tube, or cross a busy main road. As I’m a blogger, you will see photos of me smiling and laughing, but you won’t realize it took maybe 2 weeks of resting and building up
my strength to have that night/day out, and If I do, I can guarantee a few days/week resting afterward.

It’s Lonely – A lot of us had to give up careers we really loved when we were hit by this illness. I was working in travel and content and was ready to move into a dream job role when this kicked in. I had to give up my job and find a home-based one – which I did – and luckily I really enjoy. But when you’re in your flat day in day out, for months on end, without your co-workers, you start to get depressed and think of the life you had before and is this my future? This is my Youtube video on getting past loneliness

Anger I was so F&CKING ANGRY! Why me? Why now? Why for so long? WTF and there’s meant to be a god? Pleading to god, make it be over now it’s been a WHOLE F&CKING year! make that 2 years and so on – and I haven’t really prayed in years! How the hell is it possible to feel fine then wake up dizzy 24/7 EVERYDAY for 2 years plus?? 

Loved Ones – My partner is incredible, but he gets tired too, He works 10 hour days and he worries about me constantly. Can I go out today, have I used my laptop too much? Am I getting another attack?

I managed to fly long- haul for the first time in years recently, a MASSIVE achievement! I used to get very sick & dizzy, panicky on planes.

How I Got Better

Accepting it!Here is a video on how I had to learn to accept it and stop FIGHTING it all the time as it was so exhausting! 

Vestibular exercises – Here are the vestibular exercises I did. Luckily living in London put a massive strain on my vestibular system meaning I actually think I got better FASTER! I also did a few weeks of vestibular exercises and here are some of the basic ones I did although I do not need to do them anymore. 

Physiotherapy – I started to have regular Physiotherapy on my neck. After a past severe whiplash injury which I thought added to my symptoms, I used to go for a weekly massage for around a month, and then every 3 weeks. I found that my neck was less sensitive and I had fewer migraines too.

Counselling – My biggest regret was not seeing someone sooner, and I tried to manage it all on my own. I felt my partner although incredible loving & supportive just couldn’t handle this all the time and working 10 hour days & also providing for a very sick partner who was depressed and down every day. Here is how I felt on dealing with the depression that goes with it. 

Computer Glasses! – I still had to work but I could only manage 2 hours a day working from home as a social media manager. I found the screen made my symptoms worse and I felt exhausted but when you need money, not a lot of options there, you just have to do it! I bought computer glasses that helped get rid of glare. Here are some other vital things that helped me vitamin wise.

Time – The biggest thing was time. My brain was almost like it was recovering from an injury and rehabilitation takes time and can be incredibly frustrating. 

Flunarizine – When it comes to meds, this was the one that changed everything. Although after 2 years of staying active I was around 70% anyway and could start going to bars and stay out late, I still had that daily dizziness and although no way near as bad it was still THERE! Flunarizine 5mg a night helped with the dizziness to the point that on some days now I actually FORGET I am ill. I still get a few breakthrough migraines but otherwise, I am mostly migraine free.

( This med is usually the last resort for many people and it can have bad side effects and has been linked to parkinsonism. Not many countries offer this med and I have to be regularly checked up on by a neuro and monitored every 6 weeks )

Diet – Special diets really didn’t seem to make a difference on my 24/7 dizziness so in the end I gave up. I can now drink and I eat cheese and to be honest too much junk food! I did speak to a migraine specialist that said diet doesn’t make that much difference to migraines but the way I see it is, if you eat crap food you’ll feel pretty crap lol.

My computer glasses, yellow lenses and under £10 on Amazon. They are unbranded for those that asked but if you just google computer glasses on Amazon, you will see a whole range with reviews.

My words of wisdom to you

Accepting that this is now your life and there is nothing you can do about it is not true but you literally have to get up each morning and fight to walk that 100 metres to the shop, even if you can’t see very well or feel you will fall over as with time, I managed to improve massively by testing myself each day.

It’s very easy to become housebound with this condition, but living and working in London I had no choice but to go out every day to busy supermarkets, catch busy tubes to doctors appointments and manage busy high streets packed full of people.

I am certain that I am where I am today because rather than avoid my triggers I confronted them. Always remember it CAN be extremely hard to find compassion from loved ones as we look fine! I’ve often thought people would be more accepting if I had a physical symptom or illness.

REMEMBER YOU WILL TAKE STEPS BACK!!!  – But as long as you can look back and see that OVERALL you have improved since the beginning, that’s a positive thing! 

YES! The illness will ALWAYS be there but I am taking steps to manage my stress more and It’s likely it will come back if the med stops working but it will be no way near as bad as I managed without meds for nearly a year and was functioning pretty well, but Flunarizine got me past the last hurdle.

UPDATE 17/03/2019 – I am not currently on any meds unless I take sumitriptan for when I get break through migraines. I have ni dizziness at all anymore and can go out drinking and clubbing etc. I can also fly on plabes now, do some sports and swim.

By biggest hurdle is I cannot use a computer for long periods of time maiking me have to consider changing career and finding suitable work has been tough.

Starting to get a lot better! I could stand for 15 minutes then had to rest but I didn’t fall in! I couldn’t walk without holding on to a wall a few years previously

I’m now a VEDA ambassador and I’m hoping to bring more awareness, especially to doctors that try to treat us but label us with the wrong thing! Also to make friends & family more aware of what our daily lives are like and even though we may LOOK ok, we can be going through hell! 

Veda are always looking for stories so feel free to add yours on their website!