The Too Long Episodes
I am a 31 year old female living in southwestern Ontario, Canada. From the age of around 24 I started experiencing these 'episodes'. The first one started after finishing exams and getting really drunk on red wine. Really drunk. The next day I awoke to a fog state. After 3 days I called my parents with growing panic that something was really wrong. They took me right away to the university hospital where they carried out a CT Scan. They were obviously worried about stroke. They sent me home with no clue of what was going on. The foggy dream state lasted for 21 days. I felt utterly exhausted and spent the entire holiday break sleeping at my parents, and having severe anxiety attacks wondering what was wrong with me.
Less than 2 months later, I had another episode, this one lasting around 14 days. For the next 4 years I would experience 3 episodes a year, roughly around the same time. Multiple ER trips, referrals to doctors, neurologists, specialists, 2 MRIs, 2 EEGs, 1 ECG, a stress test , countless blood tests, I even had to pee in the dark in a container for a strange test. Diagnoses were thrown around. I had been told I likely had a brain tumour, to I had MS, prescriptions for vertigo, and anti seizure medication and abortive migraine pills had been written, some filled, some tossed after learning of the side effects -- why would I want to take a drug that had the risk of memory loss as a side effect? Or a dulling feeling?
Hello...I AM there already! Scared, panicked, feeling stir crazy, worried about my employers, worried what my friends and family thought, worried I was going to get admitted to the psychiatric hospital because people thought I was crazy. Told I just needed to relax, I was too stressed, this was causing me issues. It was all in my head. That I was anxious and prescribed 'chill pills' (which I refused to take because I knew something was really wrong). A part of me inside that was naive like a child about humanity, about the compassion and knowledge of doctors or family...or just people who should know better, was deadened. It was a brutish world, and I could only trust one person, myself.
It didn't help that I was having strange thoughts, or seeing things that would be there, then suddenly disappear. Thoughts like I had telekenetic powers, or that I was seeing things that just weren't there. But my dad listened to me, and didn't doubt me. And that was all I needed to press forward. I wanted to crawl into a ball and hibernate in a cave and sleep it out. What I REALLY wanted was a doctor to say 'would you submit to staying under observation for a few days (or until the episode was over)?' I had all these tests but I felt like none of them really addressed my issues. My cognitive abilities were impaired, but everyone said I looked just fine. Maybe I could walk in a straight line or stand up with my eyes closed without falling over, but I am telling you, I can't drive a car, and I can't trust any of the work I am doing in the office. Frustration.
I am a very independant person, but I think a few people who really knew me, when they started seeing me become very dependant, worried about being left alone (I once walked into my kitchen to see a pot of water on the stove on to boil and swore a stranger had entered my house as it surely wasn't me who had done this). Those close to me started to come around. And they started to stop panicking with me. They started to just accept I was having these 'episodes' (I hate that word now). Eventually I got so sick of myself and these episodes that I would go through an entire 14 day period of confusion and disorientation in my dream state and not tell a single person because I was so tired of it all. But then I panicked because I felt in it so alone and it took so much energy to try try try, to be normal. To focus on the road and the things around me, to double and triple check my numbers or reports. To pretend.
Then after much Googling on my own, discovering the term 'derealization' (yahoo! there is a name to my state!), talking to doctors who had no idea but was willing to listen to my independant 'research', I settled on what was really going on was a migraine. I have no real pain (that was the kicker). I felt a slight pressure or tension like a rubber band being stretched across from temple to temple, a 3 out of 10. A feeling of fullness in my brain. Delirium, confusion, disorientation. Strange thoughts that related to my vision - feeling like I was seeing things that werent there or looking at something and then looking at it again and it would look different or the bottle would go from empty to full, etc). Changes to my vision, a grey veil almost. Differences in shading. People's faces looked different (I call them zombies, people look like zombies). Changes to pain and pressure receptors - things were dulled, pain and pressure to my body was dulled. And sleep. Oh sleep. Oh pretty beautiful sleep. You turn on me like a horrible horrible beast.
These episodes ranged from around 10 days to 21 days, with them generally lasting 14 days. But tired. Oh so so soo sooo tired. The more I would sleep, the more dizzy and confused and dreamy I would feel. I started noticing that after a couple weeks that in the evenings I would start to feel, almost -- normal. Was it in my head? No... I definitely felt less dizzy and wobbly in my head. And less tired. Then I would go to bed, have odd fast paced dreams, and wake up very very out of it. But the worse I slept, or less I slept, the earlier I would start to feel better. I also noticed that first thing in the morning for a few minutes up to say half an hour I would feel normal then surely, the fog would set in. I started using sleep as the only mechanism to control the episodes. I would make sure that I would stay up as late as I could and get up early. Allow myself only a few hours. but that was hard, as I was SO tired in the morning. Then I would wake up every 2 hours for 15 minutes through the night. I know...I know..it's weird.
But the good thing is that 7 years later, even though I haven't gotten a diagnosis, I feel like I know what I have and after avoiding the 'trigger' foods on the migraine list (red wine, soy sauce were both triggers of episodes), keeping a regular sleep schedule, not exercising before I eat breakfast, noting when bright lights are bothering me sooner than later, I have been able to go 1.5 years now between episodes.
Unfortunately, 2 times now I have travelled to Mexico on vacation and that was a trigger both times -- I guess I wont be travelling to places with such drastic weather changes *sigh*. I have my mom now who understands and believes me, a boyfriend who is fascinated by brain things and has stopped trying to get me to try different things (oh, those well meaning people, they just can really get to you), and an employer that seems to believe what I am going through, which is the biggest pressure that was on me -- feeling like I have to pretend and peform, when I can't see straight. There is hope, never give up, and believe in yourself. And it's okay to ask for help. I just hope that one day I can get a referral to the headache clinic here in London. My doctor wouldn't give me a referral because he thought I would be denied anyway, because I get them so infrequently. True, I don't get them every day, or month. But seriously, lasting 2-3 weeks!!! Isn't that disruptive enough to a life? Oh well....I just wanted to share my story.
Community Poll
Do you feel comfortable advocating for yourself to your healthcare provider?
Join the conversation