Meniere’s Disease and Vestibular Migraine are misunderstood and can devastate peoples’ lives to differing degrees. It is very difficult to explain to people what they are and when you do, people zone out or comment “I get dizzy sometimes” or “it’s just a headache. Go to bed and take some pills.” It's right up there with "well, you don't look ill!!!"
I thought I would give you an insight of one of my Vestibular Migraine attacks. Stress, salt and rapid changes in air pressure are my biggest triggers although others can include sensory overload, shopping centres and crowded places are a nightmare. I am currently in the third day of my latest attack.
Day One
I woke up with what I call, a sober hangover. The aching starts at the back of my head, behind my ears. The tinnitus becomes louder and my hearing very patchy. The irritability starts because I can’t hear everything people are saying, and my ears become full and super sensitive to the point I want to scream “shut the f*ck up!”
The aching spreads down my neck into my shoulder and chest and when I try and move the room spins, yet sitting still, the walls feel as though they are closing in.
After a few hours of this and feeling sick, I have a very weird sensation in my eyes. They feel blurry yet light seems ultra-bright, painfully bright. That’s when I notice the sickness the most. Even remembering to breathe requires effort and energy I don’t really have.
Bedtime is difficult. Getting comfortable is a nightmare, I need to find a part of my head that does not hurt when I lay down. I cannot move too fast otherwise the room spins. When I close my eyes, I have the sensation that things are moving around in the darkness, increasing the sickly feeling … a bit like watching a scary movie when the actor is moving through pitch black rooms … why don’t they put the blooming light on?
Three to five hours sleep is a good night!
Day Two
Waking up, I dread to think how the day is going to pan out. It feels like I have been in the ring with Mike Tyson. My whole-body aches and it’s as if the brain signals are not getting through to my limbs … a bit like when CP30 malfunctions! But … the pain in the neck and head is overwhelming. Even my chest aches today as well as my fingers!
Just getting dressed is a challenge and very tiring especially trying to stop the shaking but I won’t be defeated and stay in bed even though it is scary and depressing.
By lunchtime, I couldn’t bear sitting on the sofa any longer. I had tried reading and writing but no focus and couldn’t cut through the brain fog. I baked. Probably, from a health and safety point of view, it was not the wisest move, but I positioned everything well and minimised any sudden movements. I need to accomplish something even on my worst days. I was sweating buckets and shaking after I finished but I did it. I feel better if I keep going, a defiant act! By the evening though, the pain had extended to my jaw and nose. I was back to feeling like a Zombie. Flickering eyes, very hot panicky feeling. Breathe!
It is bedtime again and I dread it but it’s a vicious cycle. If I don’t rest, the illness will not subside. This alien life form needs putting back in its hole after it has drained me of life. Once sleeping, the nightmares are disturbing. Last night, I was looking for Bobby (my dog) in the street I have not lived in over 20 years. I stumbled across a factory, in the next street, that was experimenting on humans and dogs! Bobby returned home bleeding! Scary!!!
Day three (today)
I woke up really anxious, barely being able to breathe. The tinnitus screaming through my head. I lay there thinking “is today going to go back to normal.” It made me laugh as there is nothing in my life that is normal, even on good days!
I gingerly moved. Nope … not quite there but improving. My vision is still blurry, my ears feel full and fit to burst, my jaw aches and my limbs, whilst functioning, are aching. The house feels like a ship on the ocean. There is a clamping feeling pressing on each side of my head. Sickness is the order of the day!
Adding pressure on myself, I really need to work on my PhD. One skill I have developed since developing this illness is typing with my eyes closed.
In the early days, I used to panic, the anxiety would consume me. The boys were so young and needed me to be fighting fit. I felt guilty I was not! I still suffer from anxiety, but it is manageable most of the time. There are days I want to give up and days when I just sit and cry from frustration, but I have learned to really appreciate the “good” days and not feel guilty at resting when appropriate.
The lockdown has meant I don’t have to worry about being out and dealing with the noise, the lighting, the sensory overload and asking people to repeat themselves.
For me, by far the worst feeling is being in the room but not feeling present, like an out of body experience. A George Bailey moment of looking in but not being there. It causes me the greatest anxiety as I look at people and wonder if they know what I am feeling, and they are judging me. The tinnitus has the same effect. When it is really loud, I am second guessing whether the words coming out of my mouth are actually making sense at all. Makes me feel people will judge me as being a useless orator or communicator. Sometimes silence is a better option but equally as frustrating!
Every attack brings some very strange side effects. One of them is smelling and tasting a particular type of food without it even being present. For example, fish and chips. I can smell and taste them so even my cup of tea tastes of fish and chips!! The human body is weird and wonderful in equal measure.
Maintaining a sense of humour is an important coping mechanism for me. I try to stay positive, some days I am successful, others I am totally miserable! But always honest! There is no respite … a constant, never ending cycle of trying to stay well and manage the good and bad days. It is a full time job in addition to life!
I am sickly exhausted again now. It is only 11am! I hope this has given an insight and provides some comfort to fellow sufferers. Love to hear from you and how you manage your illness.
Stay Safe
