On this website you have been able to read a little where it started for me, in this blog I want to take you through how I have experienced it all.
Back in the day I have had dizziness attacks (two or three times), it was a matter of sleeping and then this was all over again. When I experienced the dizziness on October 3rd 2015, I also thought that sleeping it out would be enough. As soon as I woke up the next day and wanted to lift my head, it was struck again against the cushion. Everything turned around me and so I couldn’t even get my head up decently.
My partner was already working and I was with my daughter of 2.5 years old and son of just 6 weeks old. I immediately called my partner but he was unfortunately stuck at work. My father would complete his work and come straight away, but that lasted for another 60 minutes with the trip. 60 minutes of which you hope your children are quiet and need nothing, 60 minutes I have been staring at his Moses crib to have a focus point.
The first week I survived like that, every day staring at that crib, while hoping that a little extra sleep would be sufficient. I still was breastfeeding the first days of that week, but each time I had to switch my baby boy to the other boob, the world started turning. Bending over my little son to puke next to the bed in the bucket and then crawl bad in the bed and breastfeeding again. This wasn’t working, and my body had also noticed that, after 7 weeks of breastfeeding the production was stopped all of the sudden.
I was not getting better
When I did not got better after this week, we called the GP, he said: ‘it’s a virus on your equilibrium, which can last up to two weeks’. Two weeks in which I couldn’t do anything myself, was constantly dependent on family and friends. Thankfully I was able to lift my head up again and take myself to the bathroom, but that was about it. So then again I called the GP, he came to my house and indicated that I was completely cramped and probably exhausted.
For family and friends it was also a lot to continuous helping us out, so we had a few months of home care through the municipality. I could slowly do a little bit more, this meant mainly to come downstairs and sit on the couch. The dizzy spells remained and my body panicked. After blood tests I found a B12 and iron deficiency, although the GP found it still pretty good within the limits, research shows that you can have complaints with these low values.
I was allowed to start with B12 injections. Unfortunately with every vertigo attack, my body continued to panic. The GP continued to visit regularly for checks and said ‘it is not easy being a young family.’ And he was right when your body completely abandoned you.
Because I didn’t got better and I was suddenly so far away from who I was and wanted to be, I started to see it all a bit darker. Not having any sight on getting better or any hope on improvement was hard to digest. Soon I got the label ‘depressed’ and was put to anti-depressants, this medication also had some influence on the vestibular system so I gave it a chance.
Very slowly I was getting a little bit better, but never came above that 20% of who I was before. I have had problems with my cavities in the past and have been operated several times for this. I then went to the ENT to see if there where things that we didn’t pay attention to. After a CT scan he could not notice anything special and from the allergy test only came back that I am very allergic to cats.
And unfortunately I had two cats. Hoping to get a little bit better, I’ve found a very good place for them, this was very hard because we were so crazy about each other. But to feel like this, no thanks. An answer about the continuous sounds in my head and the pressure I felt he didn’t had other then ‘well some people have that’.
Because I still couldn’t accept that this was it, I asked a referral to the internist. After physical examination where nothing came out it was time for questions. ‘Do you Sport?’ ‘No’ ‘well sports is very healthy so it makes sense that you don’t feel good’ ‘Believe me sir, I would prefer nothing else, because I am so fond of it. But I’m so dizzy, I’m afraid I’ll fall’ ‘then just go swimming, you can’t fall over in the water.’
And yes, he still had to laugh at his remark too. In order to help me, he wanted to give me an iron infusion, because that level had now dropped below the lower limit. Unfortunately I didn’t got better of this infusion and also my level didn’t go up, I got a second infusion with the comment ‘If this doesn’t work we need to look for the why’. There I got some hope.
So I had the infusion for the second time, unfortunately I didn’t got better this time, and my level didn’t increase either. I called with the doctors office to make an appointment, because he wanted to figure this out. First the assistant had to consult with the doctor and then she would call me back, she did. With the announcement that the doctor could not do anything for me… With no possibility the doctor wanted to see me again.
Defeated by the doctors and abandoned by my body. Fortunately, during this period I had conversations with the psychologist to be able to give everything a little bit of a place and to be able to cope with it. Also had EMDR for the traumatic experiences I had in the first few weeks. Staring at that Moses cradle.
I was so in love with that crib and I had intended to keep it so my son or daughter could use it later. But I couldn’t see that crib anymore without having a horrible feeling. This is why I got rid of the crib and up to this day I’m ‘happy’ about it, although I am so much further in this process, that cradle still stands for the impotence, fear and misery that I have felt then.
After a while I had some energy again to fight with a doctor. Well once you have the label ‘depression’ and do not sport then it is difficult to explain to doctors that that is really not the reasons for your complaints. I went to another ENT doctor, this one wanted to investigate some more. A test to my equilibrium organ and to my hearing.
Both tests showed that both my hearing and the equilibrium organ were damaged on the right. But the doctor did not have an answer to the question of how such an attack can suddenly take place. Normally there is a cold or something to do with it, but I didn’t have that. I was asking the doctor if vestibular migraines could also be an option. With a laugh he said no.
To a doctor in Antwerp
My sister Agnes has already found a specialist in the field of balance in Antwerp. My GP wanted to refer to me there in the hope of getting more answers. What an enlightenment was that already, the questions they asked were recognizing the complaints I’m experiencing.
After several rides back and forth and try out different medication they came to the conclusion ‘vestibular migraine’. This was actually quite a relief, after all these years not knowing what was going wrong up there. She stated that the fierce dizziness attack came because of all the hormones that come with pregnancy and childbirth. But a statement why it is 24/7 and why I feel that pressure in my head never came.
The second round
So I went for a second time to the internist, since my iron levels are still not on the right track. Of course in another hospital. This internist quickly came up with sports. I already had started with running again. Then they at least could not say anything about that this time.
But well that miserable depression label was also still there. And the doctor named that immediately. People I was not depressed I just could not see how I would come out of this miserable and desperate situation. Completely hostage by my body while I wanted to enjoy my young family.
I have had a few appointments in which my blood levels were constantly monitored. In the long run one of the iron levels began to rise. The internist could not explain that. Today you can see the reports online that the doctors write and communicate with your GP. Here I read up to three times that the internist doubted whether I told the truth.
Again defeated, why should I lie? Why should I put my own trajectory at risk? And if you can’t explain that iron level, it should be very interesting for you right? Unfortunately this was a tough conversation with the internist and we decided to stop this process. I simply did not have the energy to go back to that fight again. Certainly not with anyone who doubts my words.
Meanwhile, the GP keeps an eye on those levels, doing blood-test every three months, and just talking about how it goes and how we have to go on from here. I hope in the end that they stabilize themselves but knowing that in my childhood I have also had iron shortages I think my body needs a little support.
Finally hope for recovery again
For me, the options in the Netherlands and Belgium were a bit done. From Belgium I have medication that you can take for half a year. The hope was that that medication would reset the mess a bit, but unfortunately that didn’t happen. I do feel a little better in that half of the year. But in the short and long term there are quite a few side effects, so really I don’t see that as a solution either.
Fortunately, there is now CognitiveFX, and from the intake I’ve learned that there are so many similarities with the patients they treat there. For the first time I have hope again! Hope to finally have the time and energy to spend with my family. Working out again (because that solves all the problems according to the doctors;)), but without kidding, I can not wait to be able to run again, because that I always found the best!