A What Disorder?!

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.

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

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!

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Post appointment cool down: POTS Party Part 2

I’m so dizzy my head is spinning…like a whirlwind it never ends…I’m so DIZZY…love that song and so appropriate. Image credit: Morgue Files User seeman.

Last post I shared some news from my latest appointment with my ME/CFS specialist. In short, thanks to my low blood pressure and racing heart on standing he suspects I may have POTS. From the comments I received on that post, it is relatively common for people with ME/CFS to also suffer from POTS or at least some form of othostatic intolerance (an intolerance to standing up….yes I can see the funny side of that too, my body doesn’t like standing up, great….but the dizziness is far from fun).

So what is POTS? What are the symptoms? What causes it? How do you treat it?

These are all very good questions.

And to be honest they are questions that I am still somewhat floundering around with trying to understand what the hell POTS actually is and why it has suddenly (potentially) joined my little party of medical acronyms! IBS…ME/CFS…potentially POTS…enough already!

Have a read of this article from patient.co.uk  or this article if you want to know more about what POTS is.  Both are highly informative but be warned these are both quite medical heavy articles, lots of jargon if you know what I mean.

A site that has helped lift the cloud of confusion for me is a blog I’ve been reading and following for a while. Jackie over at Lethargic Smiles suffers from POTS. Her doctors thought she had ME/CFS for a while prior to a doctor finally noticing her increased heart rate. I’ve always enjoyed reading her blog, but have turned to it in with renewed interest since my specialist appointment. Jackie gives a wonderfully clear explanation of POTS on her POTS 101 page and a comprehensive list of POTS symptoms too. If you want to know more about this condition in layman language I recommend you hop on over to Lethargic Smiles. I know I shouldn’t recommend you leave my site (please come back!) but I don’t see the point of using my precious little energy to write out what POTS is when Jackie has done it so beautifully 🙂

What I will say is this. POTS stands for Postural Orthostatic Tachycardia Syndrome which (very simply) means the body does not react as it is should when we stand up. In a POTS patient on the transition to standing upright from a lying or seated position, the heart rate increases and blood pressure can drop (causing the dizziness) and blood pools in your lower limbs. In short the autonomic nervous system is malfunctioning which causes a whole array of symptoms.

POTS can develop following an acute virus, especially during the course of a chronic illness and when the body has become de-conditioned (e.g. as a result of chronic illness). POTS does seem to fit my situation given:

• I’ve suffered from a chronic illness, namely ME/CFS, knowingly for the last 2 and a half years, and without a formal diagnosis for many years more prior to then; and
• I had a horrible flu virus in April; and
• the dizziness and racing heart (tachycardia) have been much worse since then; and
• POTS symptoms include headaches, anxiety, sweating, shakiness, neck/shoulder pain, bowel problems, poor concentration, palpitations and dizziness, all of which I suffer from; and
• I suffer with what I will describe as lower limb myalgia – my calfs and ankles in particular often feel very heavy and achy, as if there is something tight wrapped around them squeezing them tighter and tighter. This has become worse in recent weeks. And finally,
• POTS can cause purple discoloured feet and lower legs. I do suffer from that sometimes but never thought anything of it, it’s normal for your feet to turn blue/purple sometimes isn’t it?! Erm, perhaps not…

At this stage my having POTS is only suspected, though seemingly highly likely. I don’t think it is being suggested that the diagnosis is POTS instead of ME/CFS. I think it is POTS in addition to and as a result of ME/CFS, but that remains to be seen for sure. I know POTS is often misdiagnosed as ME/CFS. For now all that is clear is that I have relatively low blood pressure (115 over 80) that falls sharply on standing up (to systolic 80). My specialist has diagnosed this as orthostatic intolerance for now, subject to POTS tests including heart rate tachycardia monitoring.

It seems like POTS may be another piece to the jigsaw of getting me well. Though that said, POTS like ME/CFS, is a chronic illness and does not yet have a known cure, but there are ways of managing it to improve your level of functioning and quality of life. The POTS path at least gives something else for me and my (numerous) doctors to get our teeth into. It gives another angle, another possible symptom management option which gives me a renewed surge of hope that there is away out of the ME/CFS maze for me. If not an actual get out of jail free card, it at least offers hope of some relief from new symptom management.

POTS aside, onto headaches

POTS wasn’t the only thing discussed with my specialist in my appointment last week. We also covered my frequent headaches in some detail. After he had prodded and pressed my head, neck and back in numerous places (erm…ouch) the conclusion on this was that my specialist suspects my headaches and upper body myalgia may be as a result of contracted muscles and trigger points in my neck and shoulders. So he wants me to have some physio which should relax the muscles and triggers and reduce the level of pressure and tension that keeps giving me headaches. The more headaches you have the lower your migraine tolerance threshold becomes which is why I suffer from severe migraine headaches much more now than I used to. Fingers crossed the physio does the trick, he mentioned botox injections into the trigger points as a second option…

I also discussed my plan to live back with Mr B in our flat rather than staying up at my parents. He said he thought this was a good idea and would help my morale but that I would need to be very careful so as not to wipe myself; so lots and lots of pacing.

So all in all a very productive appointment. It was (this perhaps shows how dire my situation has been at times) nice to come away with a possible new cause of my symptoms and physical treatment and tests that we can try.

Next appointment with my specialist is booked for September 20th, providing plenty of opportunity for my specialist to travel before then so he’ll lots of stories to share with me 😉

Do you have POTS and/or ME/CFS? Has a doctor ever thought POTS may be causing the ME/CFS, or vice versa? If you have any POTS and ME/CFS related advice let me know. 

Do you suffer from frequent headaches? How do you cope? Lets all share in each others’ experiences, it can only help!

Have you read my previous post, POTS joins the party Part 1? If you enjoyed this post, part 1 is definitely worth a read!

Yoga for Headaches 2

Yoga for Headaches from Fit Sugar.

Having talked about Yoga to ease headaches earlier in the week, I then came across another link for Yoga Poses for Headaches on Fit Sugar so I just had to share it with you!

These Yoga Poses for Headaches look really good and I will definitely be trying them when I get back from my weekend away with Mr B!

Back to my lovely anniversary weekend in the country for me,  in the meantime do check out:

Yoga Poses for Headaches on Fit Sugar.