migraine Archives - Page 3 of 5

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.

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.

Healing

Labyrinthitus or Vestibular Migraines?

by Viking Wanderer

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…

by Viking Wanderer

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.

Ear Plugs

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

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

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

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

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

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.

Category: migraine

Learning Acceptance With A Chronic Illness