Hello there, I've joined Stroke Org because I recently had 4-5 minor cerebellar strokes over three months and then a major one in September. I'm 44. My story thus far. (Apologies in advance for the essay length).
Early June, I was working in my orchard and took a step only to feel faint. I jumped on my Kabota, drove like the wind back to my house. Ignored my niece and son who were begging for a ride. Raced up two flights of stairs and fell asleep on the couch for several hours. I thought I was having a panic attack (I have had these since my twenties, so they are a mere nugatory in respect to what was really going on). After rest, I felt fine. During the following days, I felt a bit giddy, not dizzy but giddy. I contacted my GP who over the phone diagnosed me with BPPV (Benign Paroxysmal Positional Vertigo). "There's a lot of it about, everyone's gardening because of lockdown," she said. Okay, fine. Over the next few weeks, I went about my daily duties with a cane, mucking out pigs, pruning fruit trees, gardening, and making light of my "wobbliness". Everyone I spoke to who had had vertigo had recovered after a few weeks. Mine was now a month in and I started to worry.
So, I booked a face-to-face appointment with my GP. I went through my concerns because I had done some research and I was troubled with my symptoms, but my doctor drew me a picture of my inner ear and that was that. After several months, I contacted a different doctor and told him that I had done some research and vertigo symptoms can be the result of lack of blood or oxygen to the brain. He said this was certainly possible and booked me in for a cervical spine x-ray. I waited ten days for the x-ray to get to the surgery. When it did, I contacted the doctor but he had gone on annual leave and my previous GP had seen the x-ray and given it the all clear. About a week later I had the major cerebellar stroke. The paramedics were convinced it was a severe case of vertigo and asked me if I wanted to sleep it off. I refused. Even in hospital, I was given the Epley Manoeuvre. It is clear that this kind of stroke is so uncommon that it just doesn't register on the radar for most medical professionals. A few days later, in hospital, thanks to the Ear, Nose, and Throat specialist, a doctor who was convinced it must be something more than just vertigo - I had an MRI and they discovered that clots had formed on both sides of the cerebellum. This in itself is unusual, the clot normally goes up one side (left, right, or middle). To be honest, it was only myself and my cat who seemed to sense something more sinister was afoot. My cat curled up next to me while I waited three hours for the ambulance to arrive.
So, here I am. They still haven't found a cause yet. The stroke consultant doctor believes it may be caused by the Patent Foramen Ovale, so I am due to have a Bubble Study to determine if this is the case. I have, by their accounts, been thoroughly tested for other causes. This unkown gives me great anxiety and nervousness. After a week in hospital, I have been discharged and have been home now for three weeks.
I can walk okay, my coordination is pretty good, my strength is fine. However, my head often feels fuzzy and heavy. I suffer fatigue quickly and unfortunately, I rapidly am disconcerted by the perceived states of normality that swing back into disorientation. I don't feel dizzy (I don't want that feeling again), I'm back to feeling a bit giddy, like a lag between my head movement, eye movement and brain awareness. This lag contributes to the fatigue. I am not out of the woods, but I am on medication. I get sore legs at night causing bouts of insomnia, cramps in my upper thigh and lower calves. My neck is stiff and sometimes cramps. Swings and roundabouts, some days, for a few hours I feel fantastic, back to normal, and then later on, I feel rotten. I am nervous about any acute changes, I have become quite an on edge and prudent individual.
I know that I need to get outside and do what I would normally do. I know from experience that when I have done this I feel good but tired. What have I got to lose? If I have another stroke outside, what is the difference from having it in bed? It's the steps to get out there that make me hesitant. If I feel a bit giddy in the kitchen, I want to go straight back upstairs and sit or rest. I am slowly introducing meditation, CBT and mindfulness into my life and slowly exiting coffee (more than one cup), booze (more than one glass) and smokes. I teach English online as a profession, my students have been fantastic, as I can't teach for more than half an hour, and many of my lessons have to be rescheduled or cancelled depending on my frame of mind. Hopefully, I can resume as normal in three to four months.
I would be interested to know what other symptoms people who have had cerebellar stroke have incurred. My main symptoms are: neck ache, fuzzy head, disturbed vision (a kind of detached sensation to my surroundings), giddy/wobbly gait, extreme fatigue, shortness of breath (on occasion), leg cramps, auditory overload, loss of appetite, speech exhaustion, some muddled words, unclear thoughts, and of course, anxiety/nervousness. I also suffer from panic attacks, but I am so used to them that they don't bother me with the underlying symptoms of post-stroke.