Healing

Labyrinthitus or Vestibular Migraines?

Considering I have been diagnosed with Labyrinthitus for well over a year which in fact, turned out to be vestibular migraines, sometimes it really is almost impossible to differentiate between the two.

16 months ago, after an extremely stressful period at work, I caught a virus which doctors believed was Labyrinthitus. It was only when everyone returned to work after 2 weeks and 3 months later I was STILL housebound with chronic dizziness, I really started to question it.

The common symptoms for BOTH conditions can be exactly the same;

  • Tinnitus
  • Exhaustion
  • Constant Dizziness
  • Pins & Needles
  • Anxiety
  • Weak Legs
  • Insomnia

In fact, I’m certain a lot of people have been misdiagnosed with one or the other and with over 350 symptoms that can cause dizziness, you can expect a long road to get to your diagnosis. ESPECIALLY when the migraines are mostly silent like mine.

So how WAS I diagnosed? So I had;

  • Vestibular Testing
  • Ear tests
  • MRI scan 
  • Blood Tests
  • 3 x Eye Tests
  • Eye Hospital Check Up

EVERYTHING CAME UP NORMAL!

In the end, it took over 13 months to finally get to see a specialist called Dr Barry Seemungal based in Charring Cross Hospital in London. He is a well known neurologist and his diagnosis took under 15 minutes once I explained my symptoms.

He told me that because of my family history of migraines and my mum also being a sufferer it is most likely vestibular migraines. I then also saw another 2 migraine specialists that also told me it’s vestibular migraines because I have a history of them in the family.

They believed the stress at work, flu and possibly an old whiplash injury – apparently whiplash injuries are a common cause for vestibular migraines, a large amount of patients they treated previously had a head or neck injury –  made me very susceptible to this kind of migraine.

The thing is, once you’ve be labelled with a condition, the next doctor you see is going to treat you for that condition. In my case I saw 8 doctors and they all treated me for Labyrinthitus because that’s what the previous doctor said I had!

Even when I protested about the meds not working or really bad side effects, and is it possibly Vestibular migraines as migraines run in the family, it took me to see a specialist to finally have it confirmed.

My eyes most of the time! I ended up getting fillers just so I wouldn’t look ill all the time and I got tired of people asking me are you ok? Even on a good day!

IT WAS MY FAMILY HISTORY THAT FINALLY GAVE ME MY DIAGNOSIS

I am now taking a blood pressure tablet called Candesartan and although it’s only 3 weeks in, the dizziness has lessened dramatically and the headaches too.

I’ve learnt that anything can happen with this condition. You can be planning a trip to Paris on a short break after a great 2 months, and then BAM, new conditions hit you forcing you to be housebound for weeks until you build your strength up.

Each time this happens, you lose your confidence in your own abilities and it makes it harder and harder to get that tube train, or catch that bus as the anxiety that something could happen again is always there.

This is what I’m doing to cope;

  • When I feel low I make an effort to go out for a coffee, even if it’s only a 2 minute walk
  • I’ve started to look into counselling so that I can deal with living with this condition
  • I put myself in at LEAST 1 uncomfortable situation a week, a tube ride or a packed shop
  • When I need to I listen to my body and rest – Even if that’s 5 days solid in my house
  • I don’t make myself feel guilty anymore, I am coming to accept it and not fight it, only then can I start to understand this condition and treat it.

Still a long way to go but currently more hopeful, I may never get back to working full time and having the career I always wanted but I’m booking by first long haul holiday in over 16 months to Cuba next year and starting up the gym.

Update

2.5 years now and I am MILES better! I still have big issues with using a computer and may never be able to go back to an 8 hour day but I am thinking of studying again and having a career change. My vision improved so much and I even go out now on Friday nights with friends although I still suffer if the lights are very bright, or loud noise ect.

I just started back at the gyn and avoid running as it is a trigger but can lift weights and use the cycle machine.

I joined a support group called vestibular migraine professional which was a game changer as there were others like me and some friends and I created a smaller group for alternative therapies too called migraine associated vertigo – alternative therapies 

Mummy seeing double is also a great page!

 

 

 

Healing

Vestibular Migraines – And The 6 Things I Couldn’t…

I’m 15 months into living with chronic vestibular migraines and god how my life has turned around. Daily symptoms usually include;

  • Insomnia
  • Anxiety
  • Brain Fog
  • Exhaustion
  • Weak legs
  • Dizziness

Rather than a moaning session, below are the 6 things that I couldn’t live without. Although not a cure, I’ve tried to seek out where possible the best natural remedies to ease my symptoms and I’ve added a few products too.

  1. Ear Plugs

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WHAT a life saver! I seem to be such a light sleeper nowadays. Living in a large block of flats in a busy London suburb, just the slightest noise seems to disturb me and makes me so riled up, I can’t get back to sleep again! I can literally tune out the world with these in and they are so comfortable to sleep with!

2. B12 Vitimins

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There’s proof that a B12 deficiency can also cause symptoms similar to vestibular migraines. Simply put, if your body does not create enough naturally, you may feel exhausted, dizzy and lacking in energy. Although I can’t say taking 1000mg a day has given me back a massive amount of energy, it’s definitely lifted the brain fog and I can think a lot clearer. Perfect for my marketing home based job!

3. Resistance bands

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I’ve recently been suffering from the worst muscle weakness possible. The type where it feels like I’ve run a marathon when really I’ve been sat on the sofa watching sex & the city reruns! I stand up and my legs turn to jelly, shake and I’ve had constant pins and needles. This is also a common vestibular conditon and is believed to occur as your body tries to compensate for the damage caused. Your overloaded brain literally leaves your body feeling exhausted. These bands are very light and means I can work out in my room using squat methods and sidewalking to build up my leg strength. A very low impact exercise method compared to running which is one of my biggest triggers.

4. Nike Trainers

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How I wish this was a sponsored post and Nike were sending me over a pair of light weight Air Maxs….. but it’s not. My partner has the most ridiculous collection of expensive Nike trainers, easily over £100 a piece. I’ve had it drummed into me from a young age that if it’s not leather, then it’s not going to last. So when he walked in with another pair of Nikes made from a lightweight textile upper rather than leather, I told him he was being ripped off. Until he bought me a pair. AMAZING! With the issues I have with tiredness and leg fatigue, these have be a godsend! They are extremely light and feel like I’m walking on air ( Excuse the pun ) I’ve even dizzily stumbled into a puddle and they dried up within a few hours. Unlike my other pair of heavy, water logged leather trainers. I am now a complete convert and wouldn’t buy anything else!

5. Computer Glasses

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Ok, so I had to give up my full time job as I just couldn’t handle the 8 hour days with the dizziness and fatigue. Even 5 hour shifts used to send me to bed for an hour or two as I was so tired. Here comes in the incredible gamers glasses! More widely used by Playstation addicts spending up to 7 hours on a gaming sesh, these only set me back £10 on Ebay. Of course, I could go for the gunners glasses but these are a fraction of the price and guess what….. NO MORE EYE STRAIN! What a miracle! I rarely get any headaches after a shift now either. The yellow tinted lenses clearly define images and content.

6. Hematite Bracelet

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I have always been aware of the healing and grounding properties of crystals….. but at the same time rather skeptical. Hematite has been used specifically for vertigo and dizziness in Chinese medicine for centuries, so who am I to judge? Once again, only a few pounds on Ebay, when it arrived I could instantly feel a calming, grounding presence when I held it in my hand. Just to make sure, I handed it over to my very dubious, equally sceptical partner who told me it was all in my head. Until he went very quiet and admitted he could feel something too, a calmer more relaxed feeling. This really helps me in the evenings when I find it IMPOSSIBLE to switch off.

 

 

Healing

Living With Vestibular Migraines

I’ve been living with vestibular migraines for 15 months now. The main symptoms being the 24/7 dizziness, exhaustion, insomnia and anxiety.

I have tried nearly every form of medication, epilepsy drugs, nortriptyline, stemetil, toporimate, amitriptyline, propranolol the list is endless. I seem to be very sensitive to meds so for most of them I couldnt even last a few days on them, even though I’d take them at night on the lowest does, I would be so drugged up until 3 the next day that I couldn’t function. Not to mention the natural methods I have tried. Magnesium, Acupuncture, B12 patches, hematite grounding bracelets, Reiki and alternative healing methods. Although some of these things has helped my symptoms for a few weeks, So far nothing has helped me get this under control.

I had a really good 2 months and for the first time my vision was probably back to 80% and I could walk short distances and go out for a drink with friends ( If I wasnt dancing! ) but then it all came crashing down again 3 weeks ago.

Here is what I have learnt living with an invisible illness

Friends – You don’t see them as much. Your social activities can never be planned as you never know how you’ll be on the day. In time, they stop inviting you to things, not out of spite, but realising you are limited when it comes to travelling 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 every day things, like get on the Tube, or cross a busy main road. Also, on my good days, I will make the most of it and go out. As I’m a blogger, you will see photos of me smiling and laughing, but you won’t realise 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 afterwards.

Its 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 5 months on end, on your own without your co workers, you start to get depressed and think of the life you had before, and is this my future?

 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 eating? I suppose it shows just how strong we are to get this far, as everything is on hold. I’ve already cancelled 3 holidays as a few weeks before I was meant to fly I was exhausted and couldnt leave the house. We are now trying to book a long haul and I’m terrified of it. I’ve flown over 50 times so I never used to have any fear of flying, but now I have constant anxiety of being ill or not being able to go out when I get there and it’s just too much. When did it get to the point that the happiest time of your life is turning into something you dread?

Weird Symptoms – Recently when i refuse to stay in and try to go out for long stretches, I start to slur my words like I’m drunk. I also get my words mixed up and can’t seem to string together a sentence on really bad days. I laugh it off most days, other it really frustrates me. Another one, weird symptoms seem to pop up every few months. More recently, tingling in my legs for 5 days and then I could hardly take a few steps, it felt like I had no muscles to hold my body weight up and my legs felt like led. Another weekend trip away was cancelled.

Acceptance – I think this is the most dangerous one, accepting it. You always have to find a way to get better, or at least get it under control. But recently I’ve been thinking this is my life from now on. I’ll never get my career back, struggle to save for a pension, money will always be a worry, I won’t be able to go out and socialise like I used too and I can’t plan anything as this is so unpredictable. It get’s you really really low. I want to work full time again, travel, surf as much as possible, start up running again, go and have a few mad nights out, or go for a really long hike.

I’m currently trying a new med candesartan that helps to lower blood pressure with NO side effects! It will take a few months to see if these work.

You just have to hold in there and wait for the cycle to break…. 

As an update it’s now been 4 years now and I am back to full time work in a school and live a relatively normal life. I can go to bars, clubs etc. I still need to mantian stress at my job or I will have a mini relapse for a day or two.

I started a facebook group a while back if anyone needs support so click here to join

Also the video quality is terrible lol, but I have recorded my progress on Youtube so click here 

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