I'm not even sure how to write this post. I'm still a little bit shaken but I'm glad to do this.
We were talking to do this for about 2 years now, but you have to wait so long for an appointment, so I'm really happy I finally got my turn.
It’s time to see what’s going on in my brain when I'm sleeping.
It really wasn’t clear to me how this was going to be done, so I was pretty nervous.
At 10 in the morning I arrived at the hospital. They gave me some time to get used to the room and recommended that I relax before we started. This is easy to say, but hard to do. I really wasn’t sure what was waiting for me.
3 years ago my husband noticed that I behaved very strangely while sleeping. Before the epileptic seizures, I slept very peacefully, did not speak and also breathed normally.
After the first attacks, however, my sleep pattern changed. Suddenly, during sleep, I started talking, gnashing my teeth, and sometimes I didn't catch my breath at all, as if I suddenly experienced a shock and forgot to breathe. Sometimes when I wake up I have the feeling that I have relived traumas that I don't remember, I am surrounded only by strange feelings that I can't explain and usually then a few moments later an attack occurs. This is very strange, so we started to look for solutions.
How can we discover what's going on in my brain's during the night?
We talked to some people, and they recommended us a hospital where they only accept patients with epilepsy and try to find out the source of the seizures. You spend a week there and during that time you are connected to all possible devices where they control brain activity. If there is no attack during this time, they try to trigger it themselves in all possible ways. A great opportunity to maybe find out what is causing my attacks. But there was a problem. This hospital is in Germany.
This means that I don't have health insurance in this country, and you have to pay for it yourself. Then they told us the price. I was shocked. I knew it wouldn’t be cheap, but I didn’t expect such a price. So unfortunately it is currently unfeasible, given our plans for the future.
Certain people have told me to stop looking for the cause of my seizures and to focus on current therapy instead. I was quite a bit surprised. Although this is in all likelihood a side effect of the medicine, but still something triggers them and I am really interested what. So should I rather leave everything and devote myself to therapy with pills, without knowing what is causing them? Should I rather live in fear that the attacks will happen all of a sudden somewhere in the wrong place?
Me and my husband will not give up and we will continue to look for causes, even though certain people think it doesn’t make sense.
We won't give in, why should we? There is a possibility that we can find the cause. Of course, this is said by people who have never had health problems, but I don’t care anymore. It doesn't make sense. This is my life and my husband suffers the most because he accompanies me and lives with me, he sees the seizurs, and he lives in fear that one day he will come home, and found me on the ground. Unfortunately it wouldn't be the first time.
So it was necessary to find another option. But what?
I devoted myself to finding a similar hospital in Austria but they don’t have it.
And then I discovered something similar. Sleeping clinic.
They use sleep clinics to monitor patients overnight. They have rooms, which are equipped with a bed, as well with a lot of equipment that can detect sleep problems with monitoring brain activity, heart rate, eye movement, breathing, body movements, and so one.
I had been waiting for a free term for almost a year and now that day has finally arrived.
I got there around 4pm to get used to the room and to relax before they hooked me up to the appliances. Then it started. Preparations took almost 2 hours. I wasn't ready for that. I knew I was going to have cables on my head and body, but so much?How can a man sleep like that?
Luckily I was really tired, and after about an hour I was already asleep. But the nurse woke me up, because something wasn’t working. However, after that, it was really hard to go back to sleep. Everything was so uncomfortable. But luckily I fell asleep again.
They woke me up at 6 in the morning and removed all the cables. Luckily I wasn’t even that tired. I was so happy to see my husband when he came for me. Another challenge is behind us. Maybe we'll really discover something. Who knows what’s going on in our brains. This is another step closer to figuring out what triggers the attacks.
We will have to wait about a month on the results, because it's really a huge amount of data to review through. So, let see what will came out from this.
So, this was my day. There is always something going on, we are never bored. 🤔😎
“Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.”– Arnold Schwarzenegger
Guys, thanks for reading and till next time 😍
