We will gladly take you into the world of vestibular migraines. In this blog we are still assuming that this is our diagnosis. We think that we (in addition to the vestibular migraine) both have a form of mild traumatic brain injury (mTBI), where the exact same complaints can be heard. You can read everything about it here. In short this we think this because our complaints 24/7 are present. Sometimes a bit more violent, sometimes somewhat milder but they. Are. Always. There.

Migraine is a condition that strongly responds to internal and external stimuli. In this blog we deal with the incentives we get from our senses. Those are already super annoying. In addition, our symptoms are also exacerbated by hormonal fluctuations, air pressure changes, storm and food. Maybe we’ll write a blog about that subject later on.

Also a disclaimer here. We are not doctors, everything you read here is based on our own research, the answers of our doctors and reactions from fellow sufferers. With us the complaints express themselves in this way and this is the explanation we have for it. If there are factual inaccuracies and you can substantiate this scientifically, please send an email to info@epicsisters.nl

Well, here we go

Chronic vestibular migraine means that our head is in a constant state of migraine. Everyone knows the classic variant of migraine. The symptom that prevails there is a headache. Fortunately, Agnes does not suffer so much from this, but Paula unfortunately does. In addition to the headaches, we both suffer from a feeling of oppression in our heads, as if there is too little room in the skull. Everything feels under pressure. This also means that we have a constant brain fog Feel.

So in basics our migraines are is on us on the vestibular system. When you think of a vestibular system, you quickly think of your balance organ in your inner ear. As long as that one is in tact there is nothing going on right? Scientists have also thought this for a long time. But this seems to be rather more complex. Your balance organ is controlled from your brain, and the other way around your brain gets information from your equilibrium organ. This transfer is done by your vestibular system.

All senses are involved

The vestibular system not only gets information from your balance organ. It also gets information from all senses: seeing, hearing, feeling and to a lesser extent also from tasting and smelling.

If this vestibular system does not work enough by, for example, too much or too little blood flow, due to cramping of the blood vessels, or other causes, all the senses are going to be sharp. Your body then uses your senses to keep the balance. You can compare it with someone who gets blind, he or she is going to hear better, feel better, etc.

Of course this is a wonderful system. So magnificent, that’s the way our body works, completely out of itself. However, when your vestibular system is chronically bullied by migraine, you become tired of all those overactive senses.

Freeze, fight or flight

Your vestibular system is also linked to your fear system. What is very logical because when you lose the balance, adrenaline rushes through your body. This is to be able to catch yourself quickly, move your foot a bit or that you’re able to walk away from the unstable situation. This adrenaline comes free out of itself and provides a freeze, fight or flight response.

However, when the migraines play a little trick in our heads (below we describe when this happens mainly), this adrenaline also comes free. This immediately creates a panic feeling. You also want to flee or fight but you can’t do anything about it because in theory there’s nothing going on. We do not fall, we are sitting safely and there is no danger.

Panic attack

In the beginning this was very difficult and we sometimes got a panic attack. The advantage of having these complaints for years is that you are also know by now how this system works. So if we now feel the nasty dizzy spells, or are being too much over-stimulated, we know that this adrenaline rush is coming. What works for us then are meditation techniques and repeating our mantra: this too shall pass.

In addition to our 24/7 complaints, there are also things that we know for sure that the migraine plays it tricks on our vestibular system. Below we will try to explain in what situations that happens, what the complaints are associated with this and what impact this has on us. We appoint the three senses that are most acute.

See

Our eyes are very sensitive to movement. The doctors call this visual dizziness. As far as we are concerned, seeing is the biggest bully. We will mention here a few examples that make it clear how our eyes work differently from those of most people.

If we scroll on our phone or on the computer it can give the feeling as if we were in a elevator. As if you are in a plane and there is turbulence. This can be one time at that time, it can happen with every scroll or only comes when we are in bed. When we get these complaints at night, this is often a sign that we have been on our mobile or on a monitor for too long. The tricky thing of the delayed response is that one day 5 minutes behind the display is too long and so these complaints show up at night. And the other day we can be fine when we expose ourself an hour to displays, without getting any complaints at night.

Such an elevator/ turbulence feeling leads directly to anxious feeling in our body. The freeze, fight or flight response comes directly. As you have been able to read, we have taught ourselves to breath this away and reassure us with: this too shall pass.

Reading is also something that has totally changed since we are sick. Reading works but very briefly. Preferably also short pieces of text. If we try to focus on letters then our eyes start to twitch. No idea how we should explain this differently. They tick away? They shoot from side to side? Twitching. Reading a book or reading an article is simply no longer successful. Fortunately there is Audible where you can listen to books, this works a lot better. So now you can easily understand how difficult it is for us to type and reread a blog like this.

Even more migraine tricks

The migraine also plays tricks with us when someone with whom we talk moves back and forth (or a earring that moves back and forth), then our brain thinks we are moving. Even though we don’t pay attention to it, our eyes pick up (unconsciously) every move. Super annoying because this gives very quickly a feeling of nausea and an off feeling.

Also walking/driving along the canal, makes sure that our body thinks we are moving to the rhythm of the waves. Even if we do our best to focus on the road, our eyes pick up the movements. This same goes for watching some programs on the television. For example, Formula 1 is almost impossible to do. Also other programs with fast unexpected movements make us immediately sick.

Agnes was at the hairdresser the other day. Which is also a challenge in terms of sounds, ‘ must ‘ chat and the movements that the hairdresser desires of your head. This hairdresser had mirrors from the floor to the ceiling, super fancy. But to be able to see yourself well, this mirror was in a certain angle. Looking in such a mirror is a guarantee of nausea and an overall unwell feeling. Fortunately, the hairdresser was ok with Agnes turning a quarter and could look outside: This problem was solved easily.

Hypersensitive to light

In addition, our eyes are hypersensitive to light. Again this is one day worse than the other day but it is always there. On very bad days we prefer to stay in a dark room, every strip of light will make us feel dizzy and sick.

Also, there are certain types of lighting that make our symptoms worse, fluorescent tubes and halogen spot lights are least favorite. Unfortunately you come across these two in the supermarket very often, for example. Doing groceries are, besides the other visual and auditory abundance of stimuli, a challenge.
Also, certain lights seems to blink. This brings us out of balance too.

Doing groceries is asking for a little bit more explaining. Rows full of all kinds of products in different screaming colors and shapes, it really is a challenge if you are suffering from visual dizziness. Put on top of the music and another handful of people and the suffering that is calls Supermarket is complete;-).

The Sun

All this is of course annoying and limits our lives tremendously. But the most sad we are about not being able to enjoy the sunlight. How much we used to be able to enjoy a lovely sunny day, we now have a lot of trouble with the sharpness of the sun. One can think: Put sunglasses on, but believe us when we say that only a ski goggles that closes completely all around the eyes and with the darkest glasses may suffice.

The sun during a car ride is horrible for us. Our entire body feels awful. The flickering of shadow to light is a tragedy for us. On some days we can do this better but usually it is horrible. We can only handle a little bit of this and it is always 100 % guarantee that the days after that we feel miserable.

Hear

What we did not know is that hearing is also part of your vestibular system. Yes you know that your balance organ is in your ear but that sound really does something with your balance was a whole discovery for us. Did you know that the so-called eighth nerve in your head controls both your hearing and your equilibrium? We did not know that.

Sounds, how much we always loved sounds. Birds that whistle, children’s voices that were having fun and the Backstreet Boys who sang their most beautiful songs. Never was this too much or too loud, always brought pleasure, joy and energy within us. It’s totally different now.

We write this while there are birds outside singing there songs, spring is coming. It is very irritating because the sun is also coming in, we have to close the curtains again and we prefer to put in earplugs. But ear plugs can also get us out of balance because you experience everything different all of the sudden.

May it be a little less loud?

Sound is no longer just nice. Sound does make nauseous and causes fatigue. The impact of this is enormous. Not only for ourselves but also for the people around us, everything should always be less loud. The children playing must tone their voice, the TV must be less loud, the radio in the car must be switched off. Everything is too much.

They are now doing construction work near Agnes her house. You know, bam, bam, bam, hours in in a row. It immediately creates a false start one day. The sound is penetrating and makes nauseous, even before you open up your eyes.

Another thing that you as a healthy human being does not take into account: electric teeth brushing. Most of the days this is causing too much symptoms so we have to grab the ordinary toothbrush again. Not the worst thing ever, but it feel kind of stupid that we can’t do that anymore.

A constant beep

Also, we both suffer from tinnitus. Call it a beep, call it sought, it’s always there. Also, the tinnitus is explained by our doctor as being appropriate to the vestibular migraine. The beep, the sound also works as a kind of signal function by now. The louder the beep, the more we go across borders. Unfortunately and fortunately, during the day the beeps are often over-toned by all the other sounds. Why unfortunately? Because then we get the signal that we have gone far across our borders only until we are lying in bed. The beep is sometimes very loud and there is no escaping.

Agnes also has her heart beat in her left ear. All day long she hears a boom, boom, and if the boom is too fierce, she also literally feels it. Her head goes back and forth, this is visible to others. Internally this gives a rocking feeling.

Feel

And then there is feeling. Also something that we have never known before what influence this has on your vestibular system. Feel is always there and is everywhere. Your feet on the ground, your butt on the chair and your back against the back of the chair. Or as with us often, your feet on the couch/bed, your butt on the couch/bed and your back on the couch/bed, haha;-).

Our complaints worsen considerably when we are not stable, sitting or lying down. So for example a chair that is not with 4 legs on the ground but where a very light suspension is in. or a double bed in which your partner is also located and only moves a millimeter. Our vestibular system picks up every move, not matter how small. It immediately gives a shot of adrenaline and screams: go out of here!

Escalators, elevators and wind

Escalators and elevators are also very annoying. They can have an after effect for days, as if we are still on the escalator or are still in an elevator. Or a walk over a gravel or other track can make sure that as soon as we walk back on asphalt, we feel like we are walking on a trampoline.

Wind is also such a non ok element that can bring us out of balance. This is still apart from the fact that weather changes also causes an aggravation of the migraine. For example, if we walk a bit and suddenly there is a gust of wind, it can literally throw us on the ground or if we are lucky we know how to correct ourselves fast enough.

Our body therefore constantly balances on everything we feel. When what we feel is too intense, we become overstimulated. For example, the warmth of the sun can be too intense or the cold in the winter idem. We are not only getting it hot or cold, our vestibular system is totally out of whack and gives all the signals that we need to get away from that situation.

It’s all between the ears.

And that is truly literally the case with us haha. While writing this blog we realize that some of these complaints may also seem like a panic disorder, a PTSD or a burnout. However, the doctors in Antwerp have diagnosed us with 100 % certainty with vestibular Migraine and visual dizziness. This is mainly because we have both responded well to the treatment with Flunarizine. However, this medication may only be used briefly and occasionally. It is not a permanent answer. Read more about this medication and all our other treatment attempts.

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