A What Disorder?!

17 Oct
I'm so dizzy my head is spinning! Photo credit: Morgue File User taliesin

I’m so dizzy my head is spinning! Photo credit: Morgue File User taliesin

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.

Thankfully I wasn't on a beam! Photo credit: Gimnasia Madre_Matilde via Wikipedia Commons.

Thankfully I wasn’t on a beam! Photo credit: Gimnasia Madre_Matilde via Wikipedia Commons.

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’.

Is she swaying & tilting to the left like me?! Photo credit: morgue file user melodi2

Is she swaying & tilting to the left like me?! Photo credit: morgue file user melodi2

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?!

Vestibular Disorder

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!


17 Responses to “A What Disorder?!”

  1. averyfranksenior October 17, 2013 at 8:07 am #

    Harrowing story and times underlying your irony and humour Jess. Keep going. I am sure you will. And the stills you chose both illuminate your point and are often distinctive on their own.

    • myjourneythrume October 17, 2013 at 2:45 pm #

      Thank you Frank for your kind words. I love choosing photos to match my writing. I think it is my ironic humour that keeps me going. Better to laugh than cry and all that.

  2. triciaruth October 17, 2013 at 9:59 am #

    Fingers crossed that the exercises bring some relief and that the insurance companies get a wriggle on. I wouldn’t leave it to chance though, if you can give them a ring every 2-3 days even if you only speak to the first line support; a note will go on your record and if you’re calling regularly then they will get a wriggle on if only to stop you calling!

    • myjourneythrume October 17, 2013 at 2:47 pm #

      You’re right, I’ve been thinking I need to start harassing them via phone, the email and chance approach is not working!

  3. dawnhosking October 17, 2013 at 12:23 pm #

    Good news about the postural hypotension and best of luck with the exercises. Hope you are feeling OK today x

    • myjourneythrume October 17, 2013 at 2:44 pm #

      Thanks! I’m doing okay today. More importantly how are you? Hope the chest pain has calmed down x

  4. currankentucky October 17, 2013 at 12:30 pm #

    Really interesting points by your doctor, the whole eye thing is very interesting. My head dies at times, the idea of jumping, makes me sick. The idea of swiftly turning my head brings me to my knees. Every movement of my head is done slowly, must go and check out that link! On a better note, its great to hear your insurance does cover so much, that is a great relief no doubt and im sure the brain scan will turn out okay, they had me do one of those in my early days as a precaution too. I hope the beast is letting you rest today. xx

    • myjourneythrume October 17, 2013 at 2:43 pm #

      The beast is not too bad today, how is she with you? Jumping is definitely a no-no! I don’t even want to think what would happen if I tried to jump, my head would probably explode or something! I am very lucky with the insurance cover, it’s a ‘perk’ of my job – when you break and get really sick from overwork you at least have some assistance! xx

      • currankentucky October 17, 2013 at 3:30 pm #

        Great to hear she is giving you a small break today. I went through complete brain mush this morning but that’s cleared up in the last few hours thankfully. It was very very bad, I dread realising the extent of the rubbish I wrote in an e-mail to my consultant and I had a guy laughing at me on the phone as I attempted sentences! I’ve also got a burning sore throat, its been like that for the last three days and something in my memory tells me I went through lots of days of sore throats last winter, I keep meaning to pull out last years diary and check but then keep forgetting! That’s a brilliant perk of the job alright!!! Hold onto it!!! LOL xx

      • myjourneythrume October 17, 2013 at 7:32 pm #

        Sore throats are big problem for me at the moment too. Slightest bit of talking makes it feel like I’ve swallowed razor blades or something. Oh the fun. I’m the same with diaries, I write them and then forget to look back for patterns! Hope she lets you have a quiet night xx

  5. thehomeschoolingdoctor October 17, 2013 at 1:34 pm #

    Your specialist sounds very good and thorough, yet compassionate.

    • myjourneythrume October 17, 2013 at 2:41 pm #

      He is great, a little eccentric at times but that always makes me smile 🙂

  6. Lou October 17, 2013 at 2:38 pm #

    Not that you want to know this, but nystagmus comes from Greek, meaning nodding, drowsiness. See all that Greek and Latin learning comes in useful sometimes 🙂

    • myjourneythrume October 17, 2013 at 2:40 pm #

      You made me laugh Lou, thank you! Latin and Greek is very helpful. I think a lot of the odd medical words probably come from back then don’t they? Does myalgia mean anything in Latin or Greek?

  7. Katarina October 17, 2013 at 5:32 pm #

    It’s always stressful when they suggest a new diagnosis! I was at my specialist recently and mentioned my freezing cold hands and feet, which turn alarming shades of blue for cold and red for warm. My specialist mumbled something about Raynaud’s syndrome and sent me off to get blood work for things like rheumatoid arthritis and lupus! The upside is that hopefully you get a little bit closer to effective treatments for your symptoms 🙂 And, I hear you about the never ending waiting….

    • myjourneythrume October 17, 2013 at 7:37 pm #

      Yes hopefully with each new test and label it’s that step closer to that elusive recovery. Here’s hoping anyway! Yes RA and lupus are things that have been mentioned for me too, tho thankfully not gone further than that. Everything is so interrelated in this chronic illness world! I hope your tests and potential new diagnosis lead you in the right direction 🙂

  8. E. Milo October 21, 2013 at 1:54 am #

    Very interesting! I was wondering about a vestibular disorder myself because my vertigo (which sounds like your brain somersaults) has gotten so much worse. The new doctor I saw suggested it was to do with the muscle that connects from the chest up the neck to the ear (can’t remember the name) and thought I should consider “neural therapy” (basically novocaine injections in the muscles) for that and my headaches. PLEASE, if you ever get help from the physio, write about it – I would love some exercises!
    PS I got a brain MRI because of the headaches and it showed nothing, as per usual, I wouldn’t worry if I were you. 😉

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