Foggy got back from his Poland adventure earlier today and is now snoring softly in Foggy HQ. Next up is a trip to New York with Nigel and co. Foggy can’t wait!!
While Foggy is asleep, otherwise known as keeping out of trouble, I am taking the opportunity to write this blog. The origins of my own M.E was very confusing and I’m going to explain why.
The virus that triggered my M.E started in November 2006, I was around half an hour into the 4 hr drive home from Plymouth to Portsmouth. Fortunately, my Dad was driving and I was a passenger on the back seat. As a family, we had just spent a few days in Plymouth for my Graduation Ceremony. Thank goodness I could celebrate before the awfulness started.
Labyrinthitis, an inner ear infection, started with a wave of nausea, diarrhea, and blurred/kaleidescope vision. Our 4-hour drive turned into an epic 6-hour nightmare. I literally had to ask to stop every 30 minutes or so as my stomach wasn’t playing ball. I had lost the ability to stand upright, I could barely see where I was walking and I felt dreadful.
I phoned the GP the following morning and after a telephone consultation, was told that I had Labyrinthitis, that it would last 6 weeks and that I would be fine afterward. OK, fair enough. I could barely leave my bed for 4 days, although I was only vomiting during the first few hours, the feeling of being off-balance and nauseous lasted for 6 weeks. Then overnight I felt better. I went back to work and to study for my post-graduate course and looked forward to ‘getting back to normal’. I got myself a second job as a cleaner to get a few extra pennies, and threw myself back into living life.
That lasted 2 weeks.
I was sat watching TV with my mum and dad one evening and I felt as if someone punched me in the side of my head, I became very disorientated very quickly, quickly as in 15 seconds. The kaleidoscope vision restarted, I had a crunching noise/sensation in my left ear, the wave of nausea hit within 30 seconds and my bowels wanted to erupt violently. I couldn’t work out which way was up or down, I could barely walk. In fact, I crawled along the hallway clinging to the walls and up the stairs to the bathroom. Vomiting and diarrhea lasted for around 30 minutes but then the shivering and deafness started. I lost all sensory ability, I couldn’t see, hear, or speak properly. I couldn’t communicate what was going on to my mum who was understandably concerned. I got settled in my bed and hoped I’d be able to sleep and ‘recover’.
Those symptoms lasted 2-3 days, I phoned my GP and he said he thought the Labyrinthitis had returned. I accepted what he told me and rested, as I had with the previous bout a few weeks beforehand. The difference this time was that I didn’t feel ‘recovered’ after the ‘Labyrinthitis’ ended. I knew deep down that the latest bout of rubbishness wasn’t Labyrinthitis but couldn’t seem to communicate my concerns with my GP. This is when the, what I now know to be M.E, started. The extreme fatigue/neuro-exhaustion, muscle fatigue, light sensitivity, vertigo…… the symptoms list is a long one! I felt ill every single day without fail.
The feeling like I had been punched in the side of my head, the crunching noise in my left ear (the same ear that had the Labyrinthitis originally), nausea, diarrhea, vision issues, and temperature control issues struck fairly regularly on a monthly basis. Always when I was at home watching TV thankfully but I had started to stress out about ‘what if it happens when I am out and about’? I stopped going anywhere that wasn’t essential. To go from ‘normal’ to unable to function in the space of 30 seconds was worrying. I confided in a colleague at work and we created a private ‘plan’ for if and when I became ill on the top floor of the library that I worked in. I would need assistance as going in the lift would have been a no-no and I would have needed to descend 5 flights of stairs and cross a large atrium to reach the nearest toilet. It was a very stressful time! Fortunately, I never experienced the onset of whatever this was whilst at work. Phew.
My GP was still insisting that it had something to do with the original Labyrinthitis and wasn’t taking my concerns seriously enough for my liking. After 9 months of worry, I was referred to a neurologist for tests. After months of tests including vision testing and an MRI scan, the neurologist diagnosed chronic migraines and severe vertigo. I suffer from all-sensory migraines, which explains the complete lack of sensory function. I have never been able to work out what my trigger is, my M.E memory doesn’t help in working it out! I was prescribed Propranolol (a beta-blocker) for the migraines and told to do Cooksey Cawthorne exercises for the severe vertigo.
It took around 2 months for the migraine/vertigo symptoms to ease but I was so thankful that I was able to ‘manage’ an element of my ill health. No one has been able to establish the link between my Labyrinthitis and the subsequent migraines/vertigo. They are both so similar it is very hard to work out where the overlaps are. It is weird that both conditions cause sensations in my left ear.
Fortunately (TOUCH WOOD), I haven’t had a full migraine for 3 years. I have had the sensation that one is about to start and have nipped it in the bud by taking co-codamol, the only drug that ever touches my migraines. I now can’t take Propranolol due to adverse reactions so I am hoping regular migraines don’t come back! I still feel off-balance, I find the Cooksey Cawthorne exercises so helpful in warding off severe bouts of dizziness or feeling ‘spinny’ (My mum hates that word but I literally feel like I am spinning). Even today, I have had a pressurised feeling in my left ear, as if something is coming, fortunately….nothing yet!
I’d be interested to hear if anyone else has had similar experiences.
and Foggy (OBVIOUSLY)
Don’t forget to donate! ME Foggy Dog is fundraising for Cure me during this year-long World Tour. https://www.justgiving.com/fundraising/mefoggydog
Thank you x