Living with Vestibular Migranes

So these last few months for me have been a roller coaster and I have been struggling with some health things that only recently got diagnosed. It hasn't been easy and my head has been all over the place but last month I finally got diagnosed with Vestibular Migraines and a possible damaged Vestibular Nerve, which has been causing extreme vertigo, spinning sensation and difficulty walking, as well as tinnitus, earache and some hearing loss. It has been so tough, but just getting a diagnoses and knowing it isn't all in my head has already made me feel a lot better.

A lot of things in the future are still uncertain, but I wanted to talk more about what it is actually like to suffer from these Vestibular Migraines, as until now I know I hadn't ever head of them before... so I know I won't be the only one! 


A Vestibular Migraine is similar to a normal Migraine, however instead of getting a headache, you get symptoms of severe vertigo and dizziness, as well as suffering from tinnitus and hearing loss. I know when I get an attack I struggle to even keep my head upright and can't walk without falling or bumping into something and hurting myself. 

It can last anywhere from a few minutes to a few days... normally mines can last anywhere from half an hour to maybe 5-6 hours. It can be triggered by bright lights, busy environments and noise, but everyone who suffers from these Migraines can be triggered by different things. Yes, it's complex and everyone has different experiences with them but learning how I am triggered and how to cope with them makes them a lot more manageable.

One thing that I find the most frustrating is when people completely underestimate how much Vestibular Disorders can affect you on a day to day basis. Even getting from A to B can be difficult if my balance is off and I put so much concentration and focus into walking to ensure that I am not swaying all over the place I get exhausted so easily, and often go for naps etc during the day to give my energy a boost. Because of this, my social life does get affected and I have to pull out of a lot of things, or cancel last minute because I am feeling drained or dizzy. It is a horrible feeling and I get so anxious because I feel like I am letting people down but I literally can't function at times and if I were to force myself to go out I would only make myself worse.

One good thing is I can now drive... something I am lucky to be able to do as my symptoms are much more manageable when I am sitting down. A lot of sufferers are unable to keep driving because of their symptoms, especially if their is no trigger and can come on suddenly. So I do have a little freedom in the sense I can visit people for small amounts of time and can leave if I feel my symptoms flare up. However a lot of sufferers can't do this and often get anxious to go anywhere incase they start to feel their symptoms worsening and can't get away.

I have already hurt myself a few times by falling on my knees, or walking into the door frame and cutting my hand... it is always a huge risk and one of the side effects of suffering with a Vestibular Issue. With poor balance, you are more prone to injury or hurting yourself which is never fun and can be a real embarrassment... which is silly really but I am so worried that I'll loose my balance in public one day and completely humiliate myself.

I do have a few things I do to manage my dizziness. I constantly walk around with a stress ball in my hand, which was a tip from my physio, as it helps distract my brain and reduce the dizziness when I walk (not completely but it helps). I also like having it when I am feeling anxious as it's almost like a comforting thing and being a fidgety person it's nice to have something in my hands to use when I feel like this. 

I also recently bought some cheap trekking poles from Amazon to help my balance and give me more contact points with the floor, which will hopefully stop me from being as wobbly over time.  This was recommended by another blogger who used them after being diagnosed with Menieres and spoke about how beneficial they were. I don't use them everyday, and rarely use them when I am out... but if I am having a day where I feel a bit more unsteady... or a Migraine hits and I need to go somewhere during the vertigo, it's good to have them as a bit of support.

I can normally tell when I am going to suffer a dizzy episode, or Migraine, as I get a pressure feeling in my head and start to feel quite fuzzy and tired. I know from experience now that trying to sleep it off is the best for me as it completely drains my energy. However if I am out and about, especially if I am on my own, I will find a seat or a bench and make sure I am breathing slowly and deeply as getting anxious can make things a lot worse. I will try and drink some water if I have any and wait it out until the worst of it passes, then get myself home, all while taking my time and not rushing, as again that can trigger another Migraine. It is so scary when I feel an attack coming on when I am myself but I know I will need to learn to manage it, otherwise I will always be reliant on other people, and every time it happens I get better at coping, although it is always frustrating. 

The last thing I have done is joined an online support group, which has probably been the most beneficial thing for my sanity. Speaking to others who know exactly what you are going through and can speak about their stories has been so informative and taught me a lot over the past few weeks. Having Vestibular Migraines can be so lonely and frustrating so it's a good place to vent and let of some steam if the symptoms are getting to me, and everyone else can offer support and give me that much needed boost. Trust me, this has been so beneficial mentally and knowing that the people giving advice know exactly what I am going through has made a huge difference!

So I am on medication and trailing some different ones to find one that works best at managing my symptoms, however I have been told that this could be a permanent thing and something I will need to cope with. So much in my life has been affected by this and it has caused me to make a lot of changes to my life. Work just now is unknown and I need to find out the next steps now I have a diagnosis as to what is going to happen, as I hate being off work this long. 

It really is a case of taking it day by day. Some days I feel okay and can go out for a bit if I focus, others days I feel floored and can't do much. This can be worse if I haven't slept great, or having a day where I feel a little more anxious than normal. I have had to learn to listen to my body and know if I am feeling a bit off then not to push myself too much and take it easy, otherwise I will tire myself out completely and make things a lot worse.

The Vestibular Disorders association has been a great resource for me in teaching my friends and family about what I have and I have forwarded them on some documents that explain a little more about certain issues that might be challenging to explain in person. Its been a great resource for information and is full of facts

I only hope this can raise awareness of Vestibular issues/disorders and make people aware that they really are difficult to live with. A lot of people can think we are being dramatic or because we look okay we can't possibly be ill! Trust me, you would be sick of me if I was honest about how I was feeling most of the time.

With the number of Vestibular Disorders out there, you might know someone who is in the same boat as me, and if not, then I hope it has opened your eyes and taught you something new....

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