What with mini- breaks to Sussex and flu jab shenanigans resulting in my enforced rest and hibernation, I haven’t managed to get round to writing up how my review appointment went with my consultant when I saw him on September 20th. Better late than never, so here it is.
Good news is that the postural hypotension (blood pressure plummeting on standing up), that was so marked at my last appointment back in June, has responded well to the Fludrocortisone and has now stabilized. Yippee! At least one part of my body is co-operating.
But less good and far less helpful is that I am still experiencing dizziness and giddiness, when it feels like the insides of my head of lifting up and down whenever I stand up, bend down (pretty much a no-no) or turn ‘too quickly’ (meaning anything other than very very sloooowly). So although my blood pressure has stabilized I am still getting orthostatic intolerance symptoms. Great. Bring on bizarre ‘scientific’ experiment:
My specialist tells me to: ‘Stand there, with your eyes closed and walk slowly heal to toe towards me.’
In a bemused tone I reply: ‘Okaaaaay’
Specialist: ‘Don’t worry I won’t let you fall or crash into anything’.
Me: nervous laughter as I begin to slowly walk; instinctively putting my arms out for balance.
Specialist: ‘How did that feel?’
Me: ‘Unstable. I felt like I was wobbling and could fall over’.
Specialist: ‘Now go back’.
Me: Still with my eyes closed I start to walk backwards.
Specialist, highly amused says: ‘No no, you can open your eyes and walk back normally’.
Me, laughing: ‘Ah Okay!’
Once I’m back on the other side of the room at my starting place, my specialist has me walk quickly towards him with my eyes closed.
Specialist: ‘Can you feel you’re tilting to one side more than other?’
Me: ‘Erm no’.
Concluding this highly scientific (!) experiment my specialist tells me I sway markedly to the left when walking and that I have a definite head tilt to the left. Confused as to the significance of all this? That would make two of us. On shining a bright light into each of my eyes and having me follow his finger move up and down left to right without moving my head, my specialist tells me that I also have a subtle nystagmus on right gaze. Why is it that medical jargon is totally and utterly incomprehensible?! Apparently this is commonly known as ‘dancing eyes’. It is involuntary eye movement. Really did they need a big fancy word ‘nystagmus’ to describe that?!
At nearly an hour into my consultation I am wilting fast. My specialist can see this and quickly explains that he thinks my dizziness and giddiness on standing and turning is, at least in part, due to me having a vestibular disorder. A what you ask? Yes precisely my thought too. There they go with their fancy medical words again. Apparently this is common in association with advanced stage ME/CFS – as everything seems to be! Basically it means a balance disorder and concerns the inner ear and part of the brain that controls eye movement and balance.
Treatment, at least initially, is simple exercises done at home. My specialist assured me that by ‘exercises’ he did not mean stomach crunches but instead rotation of neck and head and so forth. My insurance provider’s rehabilitation physiotherapist is meant to be providing me with these exercises as part of her treatment program for the trigger points in my neck and shoulders that are suspected to be causing the horrendous headaches I get. The physio was recommended by my specialist back in June and I am still waiting for the insurance company to sort it out for me. I know I shouldn’t grumble, I am very fortunate to have the support and cover but I’m beginning to think I should just pay out of pocket to get this therapy done or started at least. The speed with which the insurance company is moving will see the doctors having discovered a cure for ME/CFS (here’s hoping) by the time I get going with the physio!
But in the meantime, a lovely blogger friend (thank you Terri) sent me a link for Epley’s maneuver exercises which seem highly relevant and helpful. I am going to try and incorporate these exercises into my daily routine. It’s all about helping yourself.
If you want to know more about vestibular disorder, check out this very helpful link (what did we do before the internet?!)
On telling Mr B about my apparent head tilt and vestibular disorder, he took it upon himself to talk to me with his head bent to the left, ear to shoulder and pretend to be all lopsided and off balance. Adorable as this was, the joke wore thin pretty quickly. And thankfully nearly a month on he seems to have forgotten about it (hopefully he will not get round to reading this post so will not be reminded to begin his comedy antics once more….).
Headaches and Brains
The other gem that my consultant came out with during my appointment was in relation to the aforementioned headaches. ‘Have we ever done a brain scan on you?’ asked my specialist. ‘Erm no’, and ‘Why’? I reply slightly scared, I mean brain scans are scary after all. My specialist (whom I like a lot, trust and credit with me not being more ill than I am) is full of stories and this time was no different. He tells me of an elderly lady, a long term patient of his, who had ME/CFS and who complained of bad headaches for years. In her late 80s it was discovered that she had a large brain tumour and this was the probable cause of her headaches. She died soon after. Erm, great Mr Specialist. Thank you so much for sharing this story with me, I won’t be having nightmares about that all! My specialist assured me that he did not think this was the case with me and was not ordering a brain scan for me. They are highly stressful and we all know that stress + ME/CFS = BAD. So for now, we’re sticking with the theory that the trigger points at my ‘cranio-cervical junction’ (i.e. my neck) are causing the headaches and will be eased with the illusive physio. ‘I am not giving you permission to worry about this, okay?’ were my specialist’s final words on the matter!
So that was about it from my appointment with my specialist. We also discussed the flu jab at length. As I’ve already bored you senseless about that, I won’t (breathe a sigh of relief!) go into that again here. I’m seeing my specialist next in December. By which time I hope the physio might actually have begun! Well we all live in hope don’t we!