Waiting for diagnosis
Hi all!
I am currently in the process to figure out if I have epilepsy and was wondering if anyone recognizes this situation. Also I just want to write my thoughts, as I am so stressed about it all.
In the beginning of December, I fainted while standing under the shower. Prior to that, I had taken a bath. I remember feeling unwell, and waking up sitting on the side of the bath. I could not remember sitting down, and my roommate came upstairs asking if I was alright, as he heard stumbling noises. The most logical explanation at that point was that it was due the effect of the warmth on my blood pressure. This was the first time ever in my life that I fainted.
One month later, I fainted during a cardio group class. I fell face first to the floor, and damaged my tooth. People noticed jerking movements when I was laying on the ground. I went to the GP, and had some test done to rule out heart problems (ECG, 24h heart monitor). Nothing came out of that.
Since then, I have been 'fainting' once/sometimes twice a month. Luckily only when sitting at a desk/laying in bed. At some point, I started to notice that it occurred almost always (with the exeption of 2 times) a few days prior to the start of my period. I have a Mirena IUD, which I have had for more than 5 years now. And since last year, I think around the summer, I started to have some light spotting again (was period free since I got the Mirena). I still do not have a 'real' period (only brown mucus, light spotting) but it helps me identify my cycle. I have read about catamenial epilepsy, and maybe it has to do with my Mirena wearing off.
Meanwhile I was referred to the neurologist. I went into the appointment thinking 'well, for sure the doctor is going to tell me that it does not sound like a neurological problem at all'. But during the appointment, it became apparent that my symptoms (gastric rising, feeling of deja vu) might indicate epilepsy. Particularly Temporal Lobe Epilepsy. It really took me by surprise and I have been so stressed since.
I was referred for an EEG and MRI. I have had the EEG, but unfortunately can't see the results in my file yet. The MRI is planned at the end of the month, and the second week of June I have an appointment with my doc to discuss both results.
Today I had another episode. I felt it coming (gastric rising), and decided to start a video recording of myself (I can vaguely remember this). Because I wanted to see what happens, but also to show my neurologist. It starts with me rolling my eyes back/opening and closing my eyes and dropping my head slowly to my desk. That lasted for a few secs. After that, I lifted my head and wanted to sit up right, but fell a bit to the side in my chair and made some jerking movements. I seem to have my eyes open but as my face was out of frame most of the time, I am not sure. When my head gets back into the frame, the seizure ends and I look really confused. In the aftermath, I have a headache and feel a bit nauseous for 1-2 hours. The seizure lasted for about 30 seconds.
This was really confronting to see. I am so worried about all this. The waiting drives me crazy (the initial appointment at the neurologist was at the 8th of April). I have so many questions and worries. What if I can't drive a car ever again? Why do I have this all of a sudden? What the heck is going on with me? :( I already have a lot of stress in my life (a breakup, selling our house, finding a new house for myself), which probably does not help.
Anyway I am not sure what I want with this post. Mostly get it out of my head and hopefully some recognition. Thanks for reading my story.