This last week has been a challenge, as I’ve really tried to carry on as a normal mum during the school holidays – and have used far too many spoons. So much for pacing myself. Those of you who follow my facebook page will already know that I went for afternoon tea with my mum and some friends at the very posh Cannizaro Park, Wimbledon. We were c
elebrating the 80th birthday of a family friend and I was delighted to be able to enjoy the afternoon – and to be able to wear a dress that I haven’t been able to get in to for a while.
So to those all too frequent swoony moments (no hunks involved sadly) and one story that I put on facebook. The weather has been beautiful, but has left me with massive dizzy spells and faints – I even managed a fantastic one during a short dog
walk the other day! I knew I felt rough, so Duncan called home for a teenager to come and help get me along the road. By the time Olly came wandering along I was just coming round on the pavement….what do you think he did? Straight to the dog to check he was ok!! Forget the blasted dog, what about your mother sprawled on the pavement?? Dunc says I’m not allowed out again…
This week has included a hospital trip to see a new consultant in a different speciality – cardiology. The neurologist had recommended that I be seen as she felt, along with me, that the faints are not epilepsy related but probably a dysautonomia condition. It probably wasn’t a bad thing that it was a warm day and as I wasn’t seen until late afternoon, I was feeling pretty rough. I was lightheaded and massively fatigued. Twelve lead ECG first with a new cardiographer and then the usual wait in a corridor. My blood pressure was taken on a dynamap(always think a proper sphyg better) in the corridor and, not surprisingly, was elevated – well for me anyway, as my BP is normally on the low side. The cardiologist was great. He seemed to have a sound understanding of Ehlers Danlos, wanted to know about childhood issues related to it, when & where I diagnosed (University College Hospital, London) and what heart investigations I had already had…..answer: none since childhood. He seemed slightly surprised, but went through some of the common issues of leaky valves, postural issues, thyroid levels, palpitations and then took a lying and standing BP. Whilst there was no significant difference with this (and I thought he nay think I’m making it up), he could see that I couldn’t stand up straight – it feels like I’m being pushed backwards, although I’m told I fall forwards. Weird! Anyway, he believes me enough that he has ordered a tilt table test (exactly as it sounds, but the patient is left lying flat for considerably longer than an outpatients lying/standing BP and injected with nitrates etc to observe reaction when tilted to angles which will induce symptoms. Can’t wait!), bloods and a 5 day heart trace. He mentioned postural orthostotic tachycardia syndrome (POTS) and that postural circulatory issues are a symptom of EDS – which I knew, but had been concerned that he might not recognise! More news as it unfolds.
The light entertainment has been enjoyable but tiring. I have been writing this post for days now, but the fatigue and brain fog have taken over! Duncan had bought tickets for my mum and I to visit Cadogan Hall in London for the concert “An Enchanted Evening” – with Lesley Garrett, Ruthie Henshall, Gary Wilmott and Michael Xavier (I have copied my short review to the books & reviews page). Public transport is a nightmare for me these days and I can’t manage the journey home after a show, so Duncan drove us up to Sloane Square where we managed to get the one and only disabled bay. This is where I feel so guilty as my husband came to dinner with us – really could have done with a wheelchair to get to the restaurant- and then took himself off for the couple of hours that we were being enchanted! Our darling eldest son was also in London for the evening and eventually called his father to invite him to join his group for drinks – because he felt guilty. Too late, student engineer – Dad was already headed down the Kings Road for the Curzon and a performance of the new David Brent film. Of course Duncan spent many years working on THAT Slough trading estate! Office fans will understand. Without him I just would not have been able to do this night out, and for that I am so grateful.
We had a lovely evening as a family with our dear friends Evi & David over the weekend too – they have been a major support to us in so many ways for all the family, and this is ongoing. Evi and I are just massively relieved that David & Duncan have found each other – kindred spirits in their love of Prog Rock music, meaning that we don’t have to listen any more (sorry, boys!). Then, bam!, it hit me. The fatigue, the pain – everywhere, the swelling of my feet and hands…..here comes another PJ day! I’m so sorry, I can’t come out today….
3 thoughts on “Cardiology, POTS & Some Enchanted Entertainment”
I have EDS secondary to POTS and I do quite a bit of faintin. Good to hear that your doctor was familiar with Ehlers Danlos.
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Sorry to hear about your difficult week. I am new to your blog (found it through Small Victories Sunday linkup!) but am thrilled to hear you are getting a tilt table test and finally getting diagnosed with Orthostatic Intolerance conditions (which you clearly have). Most EDS patients have some form of OI, if not multiple types.
The lying down/standing test your doctor did was much too quick – sometimes OI in EDS can take 10 or 15 min to completely show itself when standing – so I am glad you are getting a proper TTT.
However, the doctor is still talking about 2 different things and kind of mixing up terminology. Make sure that with the TTT they look at both aspects of OI: your blood pressure AND your heart rate. POTS is when the heart rate goes up while upright, and Neurally Mediated Hypotension (NMH) is when your BP drops while upright. It doesn’t matter whether a single BP reading is low or high – what matters is that your body can’t maintain a steady BP and/or HR.
I urge you to learn more about the forms of OI and the treatments so that you can help to educate your doctors (by the way, this is very common! Doctors often focus only on POTS and ignore the NMH).
This document is an excellent overview by one of the world’s top experts in ME/CFS and EDS (and OI as a part of both illnesses) – the paper specifically focuses on ME/CFS but many of Dr. Rowe’s patients also have EDS (it’s quite common in ME/CFS). For the best outcome, you should read this summary yourself (he has written it in plain language) and also print a copy to share with your cardiologist.
Click to access RoweOIsummary.pdf
The good news? All forms of OI are VERY treatable, and treatment often brings dramatic improvement to ALL of your symptoms! Treating OI has been life-changing for my sons and I (we all have/had ME/CFS – one son is recovered).
Here is a summary I wrote for my own blog (again, all the references to ME/CFS also apply to EDS):
And, finally, our experience with one treatment – beta blockers – that have dramatically improved life for both my son and I. I can now be much more active, both physically and socially, without the horrible symptoms you are describing:
It is harder to get doctors to treat OI in the UK, but persevere – it is worth it!
Nice to “meet” you – good luck with your TTT!
Live with ME/CFS
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Hi Sue, Thanks so much for your comment and for taking the time to read my post. Your information is really, really helpful. I have been printing bits to arm myself for my next appointment – thank you so much! It is really good to meet you too – look forward to keeping in touch! Claire x