CHAOSTOCOSMOS

Wednesday, 18 July 2018

Testing for Orthostatic Intolerance

Way back in 2009, after I'd begun heart rate monitoring (my initial readings can be found here, Compared to the normal ranges for my age, I'm dead ... and recent monitoring has confirmed this to still be the case, in fact the readings were generally even lower), I followed it up by doing Dr. Bell’s Simple Test for Orthostatic Intolerance, which I'd first read about on Sue Jackson's post on Orthostatic Intolerance and CFS. However, what with one thing and another, I never wrote up on the results.

As recommended, I began the test late morning, around 2 hours after breakfast. Before starting, I'd merely been to the loo and back - I reckon that isn't an "unusual activity!"

Interval SYS DIA Pulse Observations
Outset 91 60 78 Normal after mild activity.
5 minutes lying flat 111 62 54 Typical resting figures.
10 minutes lying flat 92 63 51 Ditto.
5 minutes standing ? ? ? Unable to stand still - swaying uncontrollably. After less than 2 minutes, twinges in ankles, feeling of swelling, assumed to be blood pooling. After 3 minutes began to get lightheaded and nauseous.
10 minutes standing 128 100 60 Shortly into round 2, began to get a headache, nausea becoming worse, extremely hot, sweating, trembling.
15 minutes standing 109 74 80 Other symptoms continue to build, plus lower back pain started, legs ache, urge to march on spot. Feet appear red and mottled.
20 minutes standing 97 60 73 Pain in ankles, shins and calves worse again, pain in hip close to unbearable, nausea and trembling both up another notch. Trying to control thinking in increasing brain fog becoming difficult. Dry mouth.
25 minutes standing 110 62 72 All symptoms still increasing, but ability to articulate ceased.
30 minutes standing 99 74 85 Ditto.

If we go by the numbers, then I think the results of this test are inconclusive.

Certainly the trend in my pulse rate appears to coincide with what would be expected in a patient with orthostatic intolerance and the final pulse reading of 85 is still more than the tolerable 28-30 rise from the resting pulse of 51.

Although there is nothing in the real danger zone there, it's not difficult to see that, once I begin walking or exercising and not just standing on the spot, however cautiously, I am bound to go into the "exhaustion zone."

OK, maybe I would be able to keep within my limits while doing a little light activity at home, but the moment I need to exert myself by having a shower, walking anywhere, even to go to essential medical appointments, I just get caught in the vicious never-ending downward spiral of the 'boom and bust' exertion, crash cycle.

The blood pressure readings are all within what look to me to be the tolerable side of low. What I don't understand is why they went up and down erratically and at times up, when the expected result would be down. My hunch, based on how I felt, is that my blood pressure rose in direct relation to the onset or notable increases in symptoms of pain, hot flushes and overall discomfort.

Frankly, I was way more than surprised that I did manage to get all the way through the 30 minutes of the standing test without becoming so lightheaded as to be unable to remain upright, because this has happened before, inside a minute.

That said, I know I was only able to push beyond what I'd normally be able to tolerate, mostly because I was doing nothing else that day and was in the relative comfort and safety of my bedroom, i.e. I knew I could lie down if it got too much and that I could - and did - lie down for most of the rest of the day to recover.

If I'd attempted to stand for a few minutes, say in a work environment, I wouldn't have been able to do anything else while doing so, nor for the rest of the day. Even if I'd only been out shopping, I'd have found the symptoms intolerable and would have needed help, or to sit down (as I have on many a shop's floor).

As soon as I finished the test, I did have to lie down and continued to have a headache and nausea, while the trembling, which is my usual response to any over-exertion, was still continuing to increase even several hours later.

The next time I got up to go to the kitchen, after a short rest, I felt achy, battered and bruised and, as soon as I was upright, the nausea and trembling increased again. The second time I stirred, to answer the door, although I didn't lose consciousness, I couldn't focus, nor keep my balance and was bumping into walls.

Later in the day, as often occurs after exertion, I suffered a nose bleed.

The pain in my back, hip and legs, lasted the next few days.

Nine years on, my symptoms come on quicker than they did in 2009. My tolerance for standing has decreased and rather than push myself into flares of symptoms that would put me in bed for a week or longer, I now have help to do all of the things I struggle with, including wheelchair assistance whenever I'd need to stand or queue.

Orthostatic intolerance Symptoms, Diagnosis, Treatments and Causes - WrongDiagnosis.com Orthostatic hypotension (postural hypotension): Tests and diagnosis - MayoClinic.com Orthostatic Intolerance Diagnosis: Orthostatic Intolerance (OI) Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome

Monday, 16 July 2018

Ten Things We Loved About Kos: 9. Papa’s Beach Bar

View to the sea from Papa's Beach Bar
Papa's Beach Bar on Lambi Beach, according to Tripadvisor, is the #1 thing to do in Kos Town. We can't really say as we only stopped there for a drink while on a walk to investigate the beach, but this time we will be close to this beach and plan to spend more time there. Even on our short stop though, we agree with what one reviewer said: "It has a wonderful relaxed atmosphere and feels like it has its own tranquility."

Lambi beach looking north

Lambi beach looking south

Sunday, 15 July 2018

Cottages in Port Isaac

Cottages in Port Isaac
Painted cottages like these will be found around the streets in the port of Porthkeres.

Photo © Philip Halling (cc-by-sa/2.0)

Monday, 9 July 2018

Ten Things We Loved About Kos: 10. Agios Stefanos Beach

View to Kastri Island from the Basilica of Agios Stefanos

Ruins of the Basilica of Agios Stefanos

Basilica of Agios Stefanos, Agios Stefanos Beach, Kefalos

It's a fair way from Kos Town being right up the other end of the island, but I was glad to get there to see it. We drove there independently. There are also public buses. Another way to see this area is on a Kos Island Tour, which might be easier.



Sunday, 8 July 2018

Farm Cottages

Cottages, Pentireglaze
A pair of typical farm cottages like these will be found near Porthkeres.

Photo © Derek Harper (cc-by-sa/2.0)

Monday, 2 July 2018

Countdown to Kos

A last coffee before leaving Kos in 2015
Later in the year we're going back to Kos and looking forward to it very much. Last time we were there was in 2015, right in the middle of the refugee crisis that the island was facing. Unlike some selfish Daily Fail reading types, our holiday was not ruined by the presence of these people (I was moved to the odd tear of frustration, being unable to offer any meaningful help), but we were impressed by the immensely humane reaction of the majority of the people of Kos. It endeared me to the island and to its people.

Refugee tents on the front at Kos Town in 2015
We only came across one person, a cafe owner where we were eating lunch, who began saying nasty things to some tent dwellers opposite his premises. We're pretty sure he only did so because he - wrongly - assumed that we would be bothered by their presence. We did stay out at night. The tent city was right opposite our hotel and the police station just up the road. We didn't see or hear of any untoward incidents.

Originally, I'd researched Kos as a potential alternative location to live when leaving Tenerife. Someone (who should have known better) had tried to tell me then that it was awful and I wouldn't like it, so of course I had to see for myself.

And, of course, they were completely wrong!



Having fallen in love with the island, it touched us too to hear that the island had suffered in the 2017 Aegean Sea earthquake. We are also eager to go back and see how the island is faring and what repairs have been able to be made.

So, over the next 10 weeks, I'm going to write about the 10 things we most liked on Kos.

But before I start, here are a few items that didn't quite make the top 10:

Just a glimpse of some of the delicacies at Special.
Coming in at a close number 11 is Ice Cream shop: Special

Do I need to explain why ice creams and cakes get on the list? Thankfully, it's further away from the more central hotel we've booked this time, which will limit temptation!

Other stuff we recommend, but only if you have time:

Crater in Nisyros

This was a fascinating day out, but it was all day, much of it travelling on coach, ferry, coach, ferry ... so if you have limited time, you may not think this is the best use of it. 

A view of the Asclepeion complex

It could be argued that the Asklepion (or Asclepeion), the healing temple on Hippocrates' home island, is the whole point of Kos. It's a question of time and priorities again.

Archaeological Museum on Eleftherios Square

Things we didn’t do before, but plan to do this time:
  1. Roman Odeon
  2. Kos Archaeological Museum
  3. Triantafyllopoulos Vineyards  

A few things we wouldn’t recommend:
  1. Kardamena. Only saw this town whilst getting on and off the ferry to Nisyros and I can’t think of any other reason why one would wish to go there.
  2. Kos Mini Trains. Just not great value. For most people, everything on the Kos Town route, which isn’t particularly long, can be easily and better reached on foot.
  3. Car hire. Quality of the vehicles is decidedly hit and miss. May have been source of some fraudulent credit card activity.
  4. ATM machines. If not skimmers, very bad rates. Get cash from inside the bank.
If you can't wait, the 10 things we liked about Kos are all pinned on this map, but you won't know the order unless you read my upcoming posts!



Sunday, 1 July 2018

Tree by a country road

Tree by a country road
An example of the landscape you'd expect to find around Porthkeres.

Photo © roger geach (cc-by-sa/2.0)

Sunday, 24 June 2018

Steam Engines Of The Great Western Railway



This programme takes a look at some of the thousands of steam engines operated by the G.W.R until nationalisation in 1948.

Steam Engines Of The Great Western Railway

Sunday, 17 June 2018

The Village Green


Every village has to have it's green and Porthkeres will be no exception.

Photo © Tony Bacon (cc-by-sa/2.0)

Sunday, 10 June 2018

Steam trains in St Ives



A brief record of the steam trains at St Ives station in Cornwall. Amateur home movie. A train moves over a rail track set on a green coastal edge that also holds large white houses that look out to sea.

Steam trains in St Ives, 1940's
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