fbpx
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 

 

 

 

Healing

The Top 3 Vestibular Migraine Triggers

This post has been created with doctors in mind…..

I’ve been suffering from vestibular migraines for the past 19 months. We believe in my case it’s a genetic condition, as my mum has also been suffering from dizziness and migraines for the last 35 years.

My treatment is currently Candesartan, to lower my blood pressure and stemetil when I get a dizzy attack. Other than that, I turned my back on the heavier options of epilepsy medication and strong anti-depressants due to the horrific zombie-like side effects and even worse, the amount of support groups I found on Facebook trying to help people that are struggling to come off them. They HAVE been proven to work for some people and others couldn’t cope without them, but personally, I just seem to be too sensitive for them so it’s best for you to try for yourself and make up your own mind.

I recently conducted a poll on the biggest vestibular migraine triggers on one of the largest migraine associated vertigo facebook groups and here are the results.

capture

Over 400 people suffering from this illness voted and the top 3 triggers are anxiety and stress, the weather and hormones. This is SO important as at least 50-60% of us are often fobbed off by our local GPs with ‘you just have anxiety’, when it is actually the illness that CAUSES anxiety due to a weakened vestibular system, constant dizziness and vision/ balance problems.

I did NOT have an anxiety problem before this. I was very active and social, travelling at least 4-5 times a year and I loved to surf whenever possible and had just started climbing.

After a year of suffering from V.M I developed a general anxiety disorder and Insomnia. I am currently seeing an anxiety counsellor in the hope of improving my sleep and soothing this erratic condition. So I was only diagnosed as having an anxiety disorder months AFTER having V.M, NOT before. I find because of my anxiety, if on top of this I am having a stressful time in my work or personal life, it’s my BIGGEST trigger and I have the worst attacks and relapses. Almost like I can only handle so much and once I’m pushed beyond that, my brain just can’t cope!

I also had problems with periods from the age of 14 and was ill every month so again this is definitely one of my triggers alongside cold weather or a change in humidity.

I understand that it would be impossible for doctors to comprehend every possible health condition but in general, we sufferers are likely to know more and have a better understanding than your average G.P. We are the ones living through this. So rather than looking at your P.C and following the general guidelines for medication and giving up on us when you can’t find one that fits, how about looking into it yourself? Within 10 minutes you will gain so much understanding from the facebook groups.

Where am I now?

Just so other sufferers know and to give a little hope, I have found that my symptoms are improving. I seem to get relapses caused by one of my top 3 triggers, stress & anxiety, the weather and hormones but they are becoming less frequent and I seem to bounce back quicker. I put this down to continuingly pushing myself.

15094386_10154249979569671_4109716855488269990_n

At first my symptoms were so bad I couldn’t walk up the stairs by myself and needed help for a few weeks. Gradually I could walk a few hundred metres to my local shop, by holding onto the wall at times. After this came the hardest test. Walking up Hammersmith high street in West London. It took around 5-6 months for my eyes to be able to cope with the bright lights, noise and people but ever so gradually my body started to compensate and my eyesight and balance improved. It took time and effort.

I am NOT one of those naturally highly positive people. I found it impossible to try to stay positive when I felt so terrible, and at my very worst I thought if I had to live through constant dizziness and vertigo attacks for another year then I would rather not live at all. What helped me was simply just ‘getting on with it’. I’m hungry, no one is around to food shop for me so I would HAVE to walk to the supermarket ect.

15380550_10154341470099671_502569271893536293_n

You CAN recover to some extent, obviously everyone is different, but if I had just sat in the house all day and talked myself out of it, I wouldn’t of had any life at all. I stopped the ‘I Can’t’ and at least TRIED.

It’s time to take control back of our lives and push ourselves wherever possible. Once you achieve a small step, like food shopping on your own, you will find that after, you start to take bigger steps towards your recovery.

It’s likely I will ALWAYS suffer from these symptoms but with hard work and commitment, I hope in another 2 years, I will be 90% back to normal for prolonged periods of time.

 

 

 

 

Healing

Learning Acceptance With A Chronic Illness

I’ve had a chronic vestibular condition for the last 17 months which led me to giving up my career, university degree and in general my Independence.

learning-acceptance-1

It’s believed I have possible permanent damage to my inner ear and vestibular migraines meaning my vision is effected on a daily basis, and I frequently get hit with waves of fatigue, vertigo, anxiety and insomnia. Just some of the things that set it off are;

  • Bright lights ( Shopping Centres )
  • Busy streets with too many people
  • Cars driving by too fast
  • Loud noises – Bars ect
  • Travelling – Cars, Tubes or Buses
  • Escalators – Vertigo
  • The weather – Rain or storms
  • Talking or trying to listen too much
  • Walking too far – Over a mile – Exhaustion, jelly legs

I get good days where my vision is around 90% and I can go to my local bar and as long as I’m sat down, I can have a drink and it actually makes me feel better! I forget about the swaying lol. But in general, every few weeks something will trigger it and I’m back to square one. Mainly housebound.

Ive tried to get on with things as much as an able bodied person, but it came to mind that this attitude of constantly fighting and not accepting my situation is possibly hindering my healing process, and it’s EXHAUSTING. It’s so demotivating to make yourself believe you’re going to get better, just to be hit by another hurdle. I used to do silly things like book a surf trip as I would persuade myself I’m going to get better for it, just to cancel 2 weeks before as I couldn’t walk more than 50 meters.

I also would tell my friends I suffer from a vestibular disorder but then I also find myself in the same breath saying, ‘but it will go soon’

IT HASN’T.

So after speaking to a support group, I’ve decided I’m going to try to accept it instead and stop FIGHTING it. Before, accepting it for me, meant giving up on ever returning to normal, so I fought even harder. But I researched it a bit and I found that acceptance simply means;

‘The recognition that the moment is as it is’

Accepting something as ‘true in this moment’ doesn’t mean that we endorse it or approve of it, and that was the ice breaker for me. I’m tired of planning things with friends and dropping out at the last minute as I put on all this pressure to try to be as NORMAL as possible. I need to start accepting that I can’t do certain activities and drop the GUILT! As the guilt’s the WORST part, like below for instance;

  • I can’t go to my best friends birthday, shes going to think I could make more effort
  • My friend is ill and needs help moving out, but I’m too unsteady on my feet. She’ll be disappointed
  • My partner wants to go on a dream holiday but I can’t fly long haul. 
  • I have to pull out of that girls night out AGAIN – they will eventually stop inviting me
  • I have to cancel at the last minute that trip to see my family. 

It’s hard when you LOOK ok and people can’t tell there is something wrong. INVISIBLE illnesses are the WORST!

So as from next week, I’m going to start swimming a few times a week. I’m going to work on acceptance and stop fighting it, instead saving all that wasted energy on healing instead. I’ve heard from a few people suffering from this mention that when they accepted it, they actually started to get better or have more energy.

I’ll update you in a few weeks my progress with swimming too.