Uphill and downhill and this in-between

I woke up again.

Four weeks ago.

Awakened from an artificial coma, which developed into a malignant neuroleptic syndrome from which I was initially unable to wake up.

The drug interactions with the psychiatric medication raised the suspicion of serotonergic syndrome. Simply put, I was given too many and the wrong medications.

I'm getting a lot of messages saying, "Next year will be better." My 2024 has been a constant up and down. But I don't want to say it was just a very bad year.

The year started with new, bad attacks that no one could help me with (for over 20 years). It was always diagnosed as a migraine, but my gut feeling told me it had to be something else. I had these attacks irregularly and without any identifiable trigger (that's what they called it at some point). During these attacks I could only remain in a sitting position - often for 6 to 18 hours. I tried to move as little as possible. Every movement or even a change in altitude caused incredible pressure and pain in my head. It was almost impossible to stand up, lean or lie down. I had very bad headaches, severe pressure in my head, visual disturbances and eye pain. When the pain became too severe, nausea would also occur.

When I couldn’t take it anymore and had to call a doctor, I was often not taken seriously—sometimes even insulted. There were times when I was forced to move, lie down, or change positions.

Today, I know that these pain episodes were very likely caused by increased intracranial pressure because the cerebrospinal fluid in my head couldn't drain properly. In reality, each of these episodes was potentially life-threatening. Changes in elevation—such as lying down, standing up, or moving—further affected the intracranial pressure. That’s why the pain was so excruciating.

In February I had 4 of these attacks in just 2 weeks. The doctors' statement:

"According to your MRI-scan: Your brain has deteriorated further. We can't explain that either. And the seizures - we don't see any need for further action there either. We can't say anything about that."

I contacted my doctor, who has known me for a long time and has been trying for years to understand my complex picture of diseases and symptoms.

The whole picture. You have to look at the whole picture.

He finally recommended that I have a VP shunt system installed.

I was pretty upset and scared. A 5th surgery? Again?

But I dared to go through with it. The surgery and the subsequent recovery went surprisingly well. I was in the hospital for only four days.

The recovery went so smoothly because my PTSD was taken into account. I was taken seriously. When I was in pain, I was given pain medication. I was believed.

And today? Since then, I have been seizure-free. I'm not celebrating too soon, but it's okay to be a little bit happy. It took weeks and months, but I noticed how I was gradually regaining my strength.

Maybe they were just mini steps, but for me they were huge mini steps.

It was a quiet but beautiful summer. At the beginning of October I went away for a few days for the first time - to visit a friend on a short-haul flight. It was simply fantastic.

At the end of October I had enough energy again and flew on holiday for the first time in 2.5 years. To Madeira, Portugal. Unfortunately I only had 2 good days. But these days were full of Happy-bumble-bees . Landing on the island, the sun, the sea breeze, the mountains. The people I got to know, the beautiful nature - it was simply amazing wonderful. After that everything got completely out of hand, as I described in my previous blog post.

I've been back home since the beginning of December. Little by little, the pieces of the puzzle are coming together as to what actually happened and why. Unfortunately, all the medication, the coma and the entire disaster didn't do my stomach or my blood values any good. Last week, my stomach rebelled so much that I had to go back to hospital for 4 days.

I wasn't exactly motivated to be in the hospital again. But I had a great doctor. My blood values aren't ideal yet, but they've improved significantly. My stomach needs a little extra care now.

I'm struggling to keep up once again with the bureaucratic madness of the healthcare system—health insurance, sick pay, phone calls, emails.

I'm not always well and I have to process all of this. But I am grateful - grateful for my body and my inner strength, which enable me to walk this path. Grateful for great people who are with me and support me.

I don't want to sugarcoat anything.

There are also moments that scare me, when I'm sad or terribly angry.

Sounds pretty crazy? A pretty challenging year in 2024, yes.

But in between – this in between. The Happy-bumble-bees.

They were wonderful.

And that's exactly what I want more of.

More in 2025.