November Medical Update

I’ve had another few weeks of ‘medical stuff’ commencing with a longer than usual hospital stay starting the weekend before last (my fourth hospital admission this month!). I went to see the GP out of hours in the evening with severe joint pain that my painkillers just was not getting rid of. They decided I was really dehydrated and needed IV fluids while I was there. While waiting for a room to become free so I could get a cannula put in I collapsed in my chair. I have no memory of this event but apparently it involved people being kicked out of rooms in A and E back to the waiting room and me being wheeled into a room very quickly. Several litres of IV fluid later and I was still really unwell and so it was decided it was best to admit me for the night. There was quite a bit of hassle finding me a bed, but with the advantage of being a regular I have now visited enough times to have got the loyalty customer prize of the A and E staff turning up with a portable DVD player and a bunch of DVDs while I waited. I spent a couple of hours revisiting my childhood watching ‘101 Dalmatians’ and had a general catch up with some of the staff.

I was admitted to a high dependency ward and attached to a telemetry (a machine which monitors your heart rate). The hospital was pretty busy and at one point in the night the man in the bed next to me fell out his bed and was stuck on the floor. I woke up to see someones legs and feet sticking under the curtain round my bed which gave me a real fright! Luckily he didn’t seem to be too injured and they got him back into bed. As is the usual experience when I am admitted to the hospital ward they didn’t really know what to do with me. I also think people find it hard to understand that you can be sick and young. There were some problems as the next day they decided I needed to be ‘reenabled’ by which they meant I had to sit up for breakfast and until after the doctor had been. I can’t really sit up, at least not for any length of time as my blood pools into my feet, I become really unwell and collapse. They also removed my wheelchair to the other side of the room and stopped helping me with things listed in my care plan. Consequently I stood up and walked across the room and set off all the heart monitors and everybody came running in. My physiotherapist also turned up on the ward and wasn’t happy that they made me sit up and managed to speak to them and I was allowed to lie down again. It was very stressful though as I know what happens if I don’t do these things and being ‘reenabled’ won’t re-enable me or cure me but rather drag out my hospital stay as I will keep collapsing. At some point as a result of all of this I am supposed to be having a meeting with the hospital, my GPs and physiotherapist so we can come up with a hospital care plan that makes it clear what I can’t do and what help I need. Unfortunately with having rare illnesses people don’t always get it.

Shortly after getting out of hospital I had my trip down to Glasgow to see a rheumatologist about suspected Ehlers-Dalos Syndrome and the joint problems I have been having. The journey down was a little bit of a nightmare and took a lot longer than we expected as my Mum, who was driving, had to stop frequently for me to lie down as I started to faint. By the end of the trip we were stopping every twenty minutes for me to lie down for half an hour or so before I stopped having pre syncope symptoms. However luckily the route between Glasgow and here is really beautiful and we got to stop in parking spots that overlooked snow on mountains so I shouldn’t really complain!

When it was my turn to see the rheumatologist they called my name and the ultimate embarrassing moment of the day happened, I fell over! Not only did I just fall over, I fell over three times in succession as my legs would just not hold me up! I don’t think that a waiting room of people is the best place for this to happen but luckily the consultant was very nice about, saw it was very genuine and came over to help, it also helped them see what happens to me several times a day!

My rheumatologist appointment took nearly two hours and involved having to see several people as no-one was exactly sure what was wrong but could tell something was very wrong. I do know I have lost more weight (not good) and grown taller (strange but explains why everything else has shrunk!) It seems that while I would fit the criteria for Ehlers-Dalos syndrome they’re not sure that is what I have. Instead they think I might have another genetic connective tissue disorder called Marfan Syndrome. Interesting they are the third place to mention Marfan Syndrome so I’m thinking there might be something in it. Marfan Syndrome is caused by a gene so I will have testing to look for this, it can take up to two years after the test though to get the results as there are thousands of variations that the gene has mutated to in people that they need to look for. Its a fairly expensive process so they are fairly sure I have it to put me forward for it. I made the mistake of googling Marfan Syndrome and was unimpressed that the search told me that it’s progressive, often causes sudden haemorrhages, sudden ruptures of the aorta, lung collapses and all sorts of wonderful other things. A bit more research since though I’ve found that you get yearly MRI scans, echocardiograms and see lots of specialists so they try to see problems before they really cause issues and then you can have surgery and things to correct it. Some people are also only mildly affected. Unfortunately as the rheumatologist told me there is no cure and they can do very little to improve my quality of life- which is pretty rubbish!

They also think there is a lot more going on than simply POTS/Dysautonomia and a connective tissue disorder too so they don’t think I’ve got to the bottom of it all yet. I think by the time this is all over I will have a much longer medical alert bracelet! They took 13 bottles of blood for various things (not a fun experience and they went through several veins so I’m sporting technicolour arms at the moment but at least everything can be ticked off). I am also being referred to a geneticist, back to cardiology and also to see gastroenterology as soon as possible.

I made it through the trip back home with lots more stops and even went through the first snow storm I’ve encountered this year!

Also as a final note I’m really sorry for being incredibly behind with communication this month. If you’ve sent me an email, text, letter or message I will get back to you as soon as I can but it might take me a little while.


How I nearly had Astronaut Syndrome

As a child for many years my main ambition was to grow up and be an astronaut. My room consisted of posters of stars and planets, my bookshelves of tales of outer space and the only barbie I ever owned was hung from my bedroom ceiling in a homemade astronaut outfit. For a while aged about 4 I had an email correspondence with NASA and they answered younger me’s questions about their space missions and what I needed to do to become an astronaut myself.

Fast forward to the present and while I no longer have ambitions to be an astronaut, though it would be pretty cool, I was slightly too excited to learn that POTS, one of the conditions I’ve been diagnosed with, was almost called Astronaut Syndrome. I’m very disappointed that it was not!

It turns out that astronauts after being in space for any amount of time on returning to earth develop the same symptoms as people who have POTS. Their bodies are unable to respond to gravity and they are unable to sit or stand up for any length of time, their Autonomic system (which regulates things we don’t have to think about such as heart rate, temperature and breathing) doesn’t work as well and they often have problems with fainting. While their condition is not lifelong and they are able to undergo processes for their bodies to work on earth again the similarity between the two is incredible.

It was hoped for a while that in studying astronauts return to life on earth and what worked to improve symptoms the medical community could transfer this knowledge to help patients with POTS. Unfortunately it turns out that this is not so straightforward as there is nothing exactly wrong with astronauts bodies. Nothing has really changed, they just need to readapt. For people with POTS however there are neurological changes that have taken place meaning the wrong messages are sent and we cannot control things that other people can automatically. Still there maybe things that could still be learnt and I’m following a current research project into this with interest.

It also has raised for me the question as to what would happen if you put a person with POTS in space, away from gravity. Would our symptoms improve? After all there would be no gravity to pull our blood downwards so the fact we can’t regulate this wouldn’t matter. I’m more than willing to volunteer myself to find out and revisit my childhood ambition to become an astronaut after all!

The London Diaries: Part Two

Tuesday 7th November: 17:55

Another day of testing over. I didn’t have to be at the unit until late morning today but was nil by mouth again beforehand. I finished off recording blood pressures, heart rates and carrying out my list of exercises on my twenty four hour tape before going in as well as managing to have a collapse at the hotel before leaving.

Today at the unit was tests to see my response to food. The scientist running the tests went into a lot of detail to explain what they were looking for. She explained that after eating and when digesting everyone has blood redirected to their stomach to help with this process. For people with POTS this happens at the cost of the rest of your body working well. For many people with POTS eating even a small meal can make you feel like you’ve eaten too much and have symptoms other people may only have once a year at Christmas for example when overindulging. The problem is with this is that you have the symptoms even when you eat something tiny.

The test itself consisted of being back on a tilt table for ten minutes while my heart rate, oxygen levels and pulse were monitored before lying down and recovering from this. I then had to drink as many grams of sugar as I am kilos mixed with water (this was really difficult and incredibly sickly!) This is supposed to replicate the number of calories in a normal meal. I had to drink this lying down through a straw, very tricky, as my body responds adversely to posture changes. After drinking the mixture in five minutes I was left to lie in the dark for forty minutes with five minutes observation checks before being tilted once more for another ten minutes.

While the scientist said she can’t tell me much about the results and isn’t supposed to tell me anything she did say there was a massive change between the two tilts before and after food. I could feel a difference too, feeling particularly bad after the second tilt and during it.

After these tests I was allowed to leave again until tomorrow. I ended up returning to the hotel and sleeping the rest of the afternoon away to recover. Tomorrow I have an exercise test and have to move hotels, neither of which I’m excited about.

It’s been a bit of a hard hitting day as I’ve realised how far from right things are. The scientists and doctors keep picking things up to that show that my body is not working well, things which I’ve always not paid any attention to but actually indicate more serious problems. I’m also very relieved to have the evidence that yes there is something very real going on and I’m not making it up. I have been saying for a number of years something really is not right and in a way it’s reassuring to know that that is the case after all. I just wish I was getting happier answers or fixable conditions!

Wednesday 8th November: 21:01

Another tough day but fortunately tests are now all completed. It was a tough start to the morning but I wasn’t nil by mouth until mid morning and didn’t have to be at the hospital until early afternoon. As we had to check out of the hotel the hospital had booked us into we spent the first part of the day in the hotel lounge until it was time to leave.

At the hospital this afternoon I had my final test looking at my tolerance to exercise. This was the simplest test I’ve had to carry out but also the most interesting as I was able to see the results as they happened on screen in front of me. To begin the test I had to lie down until my pulse and blood pressure base lined and then I had a 5 minute standing test (just had to stand up for five minutes while my sats were recorded- this has become difficult for me). This in itself was interesting as it was very clear I cannot regulate my pulse, temperature or blood pressure at all while standing. I then had to rest for another ten minutes before my pulse and blood pressure returned to base line level before the real challenge began, cycling while lying down. I had to cycle for nine minutes and every three minutes the scientist took my blood pressure and pulse and increased the bike resistance. I managed to set off alarms as my heart was going too fast towards the end. I then had a ten minute lie down with monitoring every one minute before being asked to stand up for another five minutes. Once again my heart rate shot up and she was forced to end the test a few minutes in as my blood pressure plummeted and they said I was about to faint. So that ended my tests at the Autonomic Unit.

Next step is a multi disciplinary team meeting next week to discuss my results and put them all together and an action plan is formed. I then get sent a letter and return to discuss it all with my consultant. While the scientists and doctors aren’t supposed to give much away this week they’ve all said they’ve got a lot of information and I now know my pulse, blood pressure, temperature and breathing are all affected.

Friday 10th November: 13:32

I made it home and am so relieved to be back in my own bed! Yesterday I didn’t have any tests but did have to sit up for a lot of the day which was really tough. I found a park bench to lie on for a lot of the afternoon and ended up crashed out on the station floor in the evening. The sleeper train last night was amazing. As nobody had booked the accessible room and as I rolled along with my wheelchair they moved me to the accessible room. The extra space made it so much easier! I also visited a cycle shop in London and Rollo is now kitted out with lights so I’m a bit safer rolling along the single track when it gets darker in the evenings.

Arriving back I have also heard I qualify for advanced rates of PIP for both mobility and daily living. It’s a bit of a shock as I don’t think of myself as disabled even though things are difficult. I’m just me. Now just to wait for test results and rheumatology later this month.

The London Diaries Part One

Friday 3rd November 2017- 16:00

Super nervous. Setting off from home in an hours time to begin the long journey down. I’ve got a twenty minute drive, three and a half hour train journey and then a 9 hour sleeper train to get to London for my tests and I’m kind of dreading it all. At least once I’m there I can crash until Monday when the tests begin. We spent the afternoon packing, well my Mum did, turns out the biggest piles of things to take was my medication. We also have A and E protocols for if I end up in a hospital that doesn’t know me on the way down as well as a whole load of fact sheets on my conditions as it’s rare anyone has heard of it. I had a trial run with this information yesterday. I was just about to sleep when I suddenly felt really unwell and my pulse hit 176 while I was resting. A first for me to have that happen out the blue. It was pretty scary. I got taken to hospital by ambulance and the paramedics were able to use my fact sheets. I was border line being admitted but everyone needs these London tests to happen and I had only last been in hospital earlier that day so for now we’re going to see how far I can get on the way down. No pressure at all! I’m very tired from it all and I can’t get my pulse below 90 which has worn me out. I’m hoping it means I will be able to sleep on the train as a result. I’m just trying to keep the nerves at bay. It will all seem like an adventure in a few weeks hopefully!

Saturday 4th November: 10am

Successfully arrived in London and so very relieved to be here! The train down wasn’t brilliant but not disastrous either. The hardest part was sitting on the train to Glasgow as that felt very long and I was ready for a nap by the time we arrived. Luckily we didn’t have to long to wait until we could get on the sleeper. This was definitely a bit of an adventure as there is not much space, which seems obvious, but I didn’t fully consider it. Rollo, the wheelchair, just squeezed in but took up the floor space so we squeezed on to the berths and rolled him in. I was very nervous about getting a sleeper for the first time however there was really no need to be. It was an incredibly comfy bed, you get given an eye mask and ear plugs and there are no announcements. I managed to sleep on and off on the way down. It was fairly bumpy but you get used to it quickly and it only became strange when we stopped. We arrived in London nearly an hour early and were woken up by the assistance people with their van to take us through the station and help us get off the train. The only downside of this was an extra hour to be up in the day.

Squeezing Rollo on the sleeper

We’re spending the first night in Premier Inn Hub in London before we get put up in hospital accommodation for the tests. Premier Inn were absolutely amazing! We arrived at 9.30 in the morning (check in is at 2) to drop our bags off. As I was a very grey colour and having presyncope symptoms they however offered to let us check in then and we only had to wait ten minutes for the accessible room to be sorted and that was it. We’ve consequently just checked in and so relieved that this has been made easier. The staff here are really friendly too. It’s my first time staying in an accessible room and it’s been well adapted with a shower seat, emergency alarms and more space. Not sure what will happen the rest of the day.

Sunday 5th November: 16:00

Had a very rough day so tucked up in bed in a new room dosed with strong painkillers. I think I’m paying for the traveling and a mini trip out to Hyde Park yesterday to people watch.

We moved Rooms today as for the rest of our stay we are being provided with accommodation by the hospital who are carrying out my tests. We’ve been put in an NHS hotel which is a novel concept for me. It’s a really nice hotel which provides accommodation for people who have to access services at the University College London Hospitals but live further afield. Apparently most of the people who stay here are seen either by the same place as me, are getting transplants or have rare forms of cancer. Everyone staying seems really friendly and there is a sort of day room where you can go and sit. There’s also a laundry that’s free to use, you can borrow Kindles and DVD players from reception and the rooms are well stocked with drinks and snacks. Since we’ve checked in I’ve been stuck in bed though so not really been able to do anything today. Tests start 8.30 tomorrow morning and I’m nil by mouth from tonight.

Monday 6th November: 17:39

Feeling absolutely deathly. I knew today would be tough I just didn’t appreciate exactly how tough! I got to the Autonomic Unit at 8.30 and had to wait in a day centre for tests to begin. The day centre was a room of recliner chairs where patients sit until they are taken away by porters and in between tests. I had my blood pressure and pulse done here which were already not too good. They couldn’t pick up my oxygen sats as my hands were too cold so I had to sit holding a bottle of hot water they gave me. Apparently the cold hands thing is an Autonomic thing, I always thought it was just me!

About twenty minutes after arriving I was taken to a different floor for my tests. A doctor who was really nice and once she found out I was interested in the details of the tests gave me lots of information ran them. After a mini consultation going over my daily symptoms I had to lie down for part one of testing: seeing how my Autonomic system responded to everyday things. I was attached to an ECG machine, oximeter and had a cannula put in my arm. I had to carry out a number of breathing tests, had an temperature test where ice was applied to my arm, had my reflexes tested, had some lying down to standing up tests and also had a stress test. The stress test consisted of counting backwards in 7s from 100 but apparently nothing changed on my sats so they started giving me quick fire maths problems instead. After this round of tests was the tilt table test. The tilt table test consists of being strapped to a table which is then tilted upwards 60 degrees- it sort of replicates standing up and can last between 10 and 45 minutes. The doctor made the decision from my readings to lower me back down after ten minutes. I didn’t faint but felt very dizzy and light headed. They took quite a lot of bloods to check for autoimmune diseases and also to check adrenaline levels when I was both lying down and on the tilt test.

While I didn’t get any results and couldn’t see any numbers from today the doctor did stop several tests early and said they had a lot of information that would be useful from the tests so I’m expecting it definitely showed something. My blood tests get sent to Oxford so it will be a while before I hear back about those.

After a 30 minute lie down as I wasn’t well enough to sit up, I was wheeled through to another room for part two of the day. I had to fill out quite a bit of paperwork agreeing for my test results to be used in research (there’s currently very little research so this will be interesting). I was then attached to a blood pressure cuff which will take my blood pressure and pulse every twenty minutes for the next 24 hours. I have to write down every twenty minutes what symptoms I’m experiencing and what I’m doing as well. Alongside this I have quite a bit of homework to do with the blood pressure cuff on including walking up stairs, standing up for five minute intervals, walking briskly and carrying out activities I know exacerbate symptoms. It’s not too much fun.

After all of this there was a bit of a break where I had lunch in the hospital canteen and then sat up in the day patient room before seeing a doctor this afternoon. The doctor appointment was a little bit pointless as it was to check I was well enough to have the tests I had already had. It was also to answer questions which unfortunately she didn’t know the answer to any of mine so will have to email her boss but isn’t sure if they will reply before I leave. The doctor was surprised I hadn’t been admitted as an inpatient for tests on the ward and left us with the parting words of to go straight to A and E of my symptoms become particularly troublesome. Not very encouraging.

After all of this it was mid afternoon and so it was time to head back to the hotel and begin my homework of activities. We arrived back at the hotel for me to have a near faint on arrival and so I’ve not moved consequently for the last couple of hours except to record my diary and do a sit and standing test. I still have the stairs and other homework assignments to go.

Unfortunately I’m really feeling far from well after today and am struggling to move at all. I’m well dosed up on morphine though it’s still all feeling a little bit unbearable. I’m holding on to the fact that these tests are the only way to get the answers I really need. Luckily I’m not due back at the hospital until 11am tomorrow morning when I have a meal test and have to have two more tilt table tests. We also have to move hotel tomorrow as the one we’ve been put in is fully booked so the Autonomic Unit are moving us somewhere else, we just don’t know where yet.

Assessments, assessments and some more assessments

After months of waiting for things to happen I’ve suddenly had several weeks filled with assessments for all sorts of things; carers assessments, PIP assessments, option assessments and also assessment results back from university. It’s felt pretty busy all of a sudden and there has been a lot of reviewing everything. I had been really hoping that all my assessments for things would hurry up so I could start getting help that I needed put in place but what I didn’t expect was for them to all be quite depressing. The assessments, understandably, are designed to work out what is going wrong, what you need help with and what you can’t do. However, I’ve found that quite tough. I try not to focus on the negative side of things as much as possible and suddenly I’ve had several weeks of meetings that have all focused on problems and difficulties.  I also realised I hadn’t quite appreciated the extent my health has deteriorated and how much I’ve lost the ability to do things. Probably because everything has happened gradually over the course of this year things have just slowly changed or adjusted and I’ve needed more help with daily tasks as time has gone on. It was a bit of a shock therefore to suddenly have to examine the differences between me being well and now and list everything that has happened. It also became more apparent that my symptoms have also been present for quite a long time and I just ignored them as they were milder for many years. This has been a bit of an odd realisation as suddenly more and more things are linking together that I had previously dismissed and just carried on with.  All of this has been quite hard to bounce back from as well as physically exhausting with having a lot of meetings all clumped together. Luckily all of them were carried out at home so I didn’t have to travel anywhere. I’m now waiting to hear back from them all as to what the next steps are.

My carers assessment was probably one of the toughest assessments to get through as it was very long, fairly repetitive and quite difficult to know what sort of information you were expected to give. Carried out by a social worker they looked at what help I need with day to day living, taking part in social activities and getting out and about. They also look at whats already been put in place, what the goals you want to achieve are and barriers in the way of reaching them and also how you feel on a daily basis both mentally and physically. I didn’t quite expect there to be so many parts to this assessment and ended up having to have it carried out over two separate meetings as I wasn’t well enough to sit it all out in one go. I’m not too sure how it went overall as the assessment didn’t feel like it was very well geared question wise to me or to someone who has health that is still deteriorating or in fact to younger people. My longterm goal is I want to live independently, I do want to work and I want to carry on studying again at some point but I have to wait for more health answers first from hospitals and that got quite confusing to try and explain. It felt a bit like the assessment tried to put you in a restrictive box and assumed because you were ill that you had no plans other than to sit around doing nothing and have it arranged that people would be paid to come to your home to talk to you about the weather or something for an hour a week (OK I’m quite cynical and possibly over exaggerated a bit but it did feel very much like that!) The assessor also seemed fairly convinced I needed to have a television in my room (I don’t currently and don’t have any plans to) and I don’t think she understood that. The assessment then finished with several questions that felt a bit patronising such as ‘name x number of things that are going well with your health right now?’ This after an hour of all that’s going badly seemed a little bit odd and seemed a bit like a token question on the assessment sheet to try and end on a positive note but was kind of hard to answer. I have about a months wait to see a copy of the report from this one.

In-between my two carers assessments I had my PIP face to face assessment. PIP is a benefit paid to people who struggle with daily living tasks and mobility in the UK to help you be able to get support with these types of tasks. You apply by sending off forms and evidence and then you have a face to face interview with an assessor who checks your evidence, asks you a lot of questions, gets you to carry out exercises and writes a report on the interview. In the press there is a lot of horror stories about PIP assessments and so I was incredibly nervous about this. Luckily, I was surprised at how well it seemed to go. Originally I had been told my assessment wouldn’t be until February but it actually ended up being less than a month after I sent my forms in. I heard I was having an assessment four days prior to the day and also found out I was being assessed at home. Assessments are normally only carried out at home if you are terminally ill, or have good supporting evidence as why you can’t travel to an assessment centre. I had expected to have to travel for it and was really nervous about that as I really cannot sit up for very long, so I was incredibly surprised and relieved to find out they would come and visit me. The day of the assessment I was in the middle of a flair up and not long out of hospital so she was quite happy that I was stuck in bed and just carried out the interview in my room. The assessment lasted about an hour and a half and was mostly a lot of questions covering all sorts of things. I then had to answer some maths questions and spell words backwards which was easy and then I was supposed to have a physical assessment where they ask you to carry out several activities and see what happens. However the assessor took my pulse and oxygen levels before any of this and as these were not good readings  and apparently I was a fairly grey colour she wasn’t happy for me to do anything as she was worried she would end up calling an ambulance so that ended the assessment. While I am not sure what the report will say this assessment was no way near as scary as I thought it was going to be and the assessor told me to appeal the decision if I’m told I’m not eligible. While there were some questions that did seem a bit designed to trick you out if you weren’t genuine, this was one of the best face to face assessments I’ve had throughout the process of being ill. I’ll get the assessors report in a couple of weeks and the decision in about a month.

This month I’ve also heard back about my masters degree assessments. I’m absolutely thrilled to have passed my course and also did better than I had expected I would do when I handed my final dissertation in. It’s made it really worth sticking it all out when it got really tough towards the end and has been excellent news to get in amongst all the other assessments!

Now just to wait for next week- the week of London hospital tests!

Dysautonomia Awareness Month

Once again I’m a little bit behind with blogging but my excuse is that I have had a month of feeling especially rubbish with symptoms and consequently had quite a lot of hospital visits. I’m considering giving the hospital as my address now. Luckily admissions have become  routine; they know what to do, I know what will happen and I know most of the staff now fairly well. My last admission my nurses ended up changing so that I have consistency with it being the same few people which I was very grateful for as I didn’t have to explain anything and they knew the signs to look for too. Consequently it was a fairly quick visit as they just attached me to a drip and started giving me fluids very quickly. They also got a vein first attempt, the first time this has happened for months!  As a result though this post that I had hoped to write near the beginning of October is just being written now. However as it is still October which is Dysautonomia Awareness Month I decided it would still be relevant.

Dysautonomia Awareness Month

I’ve always felt a bit unsure of awareness months for various things if I’m completely honest. Maybe its because there are a lot of them and sometimes it is confusing if it is awareness about the issue as a whole, or a specific element of it and also what as an individual you can do about it. However, I have found that with something like Dysautonomia Awareness Month it is quite useful. As a result of the month more information is being released about dysautonomia and made public and so more people are told what dysautonomia is and signs to look out for. As it is a relatively unknown group of conditions dysautonomia is rarely diagnosed and often people know little about it including medical professionals. Since being diagnosed I have only come across three medical professionals who knew what it was (and I have seen a lot!), one of these worked specifically with people with these conditions so I’m not sure if they count. Out of the other two medical professionals I was the first person one of them had met with the condition and for the other only the second in their career and they worked at a large teaching hospital. My own diagnosis really only came about by chance. Now consultants think I may have started to show symptoms of it, albeit mildly, since I was nine years old. It was not until several years of being abroad resulting in me being directed to tropical diseases, in what ultimately proved to be a red herring, leading to a consultant who remembered reading a journal article about dysautonomia who put my symptoms and the condition together. If it wasn’t for that one person, I’m not entirely sure where I would be now or if I would be any nearer a diagnosis. Awareness therefore can make a massive difference.

So what is Dysautonomia?

Dysautonomia basically means disruption of the autonomic nervous system. There are various types of it; some only affect specific population groups such as specific ages or ethnic groups, others are incredibly rare, they also range in seriousness. Postural Orthostatic Tachycardia Syndrome or POTS (which I have a diagnosis of) is one of the most common types. POTS while only being recognised as a syndrome in 1993, has however been around throughout history. Previously it has been known as Soldier’s Heart, which was documented as a condition that caused soldiers to faint on exertion; Irritable Heart; Effort Syndrome and De Costa Syndrome. There is also documentation of an abnormal type of polio that consultants today now think might have been POTS. More recently many people with POTS and other types of dysautonomia have been diagnosed with ME or Chronic Fatigue Syndrome and it is estimated that up to ten percent of people with a diagnosis of ME/CFS might actually have a form of dysautonomia that has never been diagnosed.

Throughout history and even today it is extremely common that people with dysautonomia are wrongly given a psychiatric label, especially as there can be so many symptoms and yet it can be difficult to see, making it an invisible illness. Instead it is often believed to be in the patient’s head and there are many associations made with the historical idea of the hysterical female (POTS sufferers are mainly female and develop symptoms as a teenager/early twenties). From my own experience I started to have an increase in symptoms when I first started university as an undergrad, I was directed by my university GP for Cognitive Behaviour Therapy. I was then rejected from the CBT course as the person running it did not think I displayed stress or anxiety and didn’t understand why I had been referred. For many people this becomes a never ending loop. POTS is not connected to mental health however sometimes symptoms may seem similar to those experienced by people who are anxious or stressed by a doctor. The average person takes six years and eleven months to get a dysautonomia diagnosis from when their symptoms first start becoming problematic.

What is especially frustrating about this is that dysautonomia, especially in the case of POTS, can be recognised from very simple tests. Taking your pulse from lying down and then monitoring it while standing up for ten minutes can provide an indication of whether there might be something more serious going on. If your pulse goes over 30 beats per minute higher than your resting pulse within ten minutes of standing (over 40 beats per minute if your under 19) then this is a sign something isn’t right and your body is struggling to correct itself in relation to gravity.

What causes POTS?

POTS symptoms are caused when the autonomic nervous system doesn’t work properly. On standing gravity pushes blood downwards into the legs. Most people are able to continue to get their blood flowing back to normal and their bodies constrict to changes in posture quickly enough that they don’t notice. For people with POTS this doesn’t happen and you end up with blood pooling in your feet and legs, your body consequently has to work much harder to pump enough blood and oxygen around, which causes your heart to beat faster. People with POTS may faint on standing up as a result. Often we also don’t have enough blood volume either. It is basically torture by gravity.

POTS though is just not a case of your heart rate speeding up on standing, there are many other symptoms alongside including gastrointestinal issues, difficulty thinking and concentrating, exhaustion, headaches, muscle and joint pain, tremors, lightheadedness, numbness in limbs, dizziness and many more.

Why does it happen?

This is different for everyone. Some people develop POTS after a virus and they just never seem to get better. For other people it develops during pregnancy or after surgery. For many people though there may be an underlying condition that triggers dysautonomia such as a connective tissue disorder, lymes disease, lupus or a number of other conditions some of which are extremely rare.

Long term Prognosis?

This is fairly unclear as research into POTS is quite new. What research has shown is that people living with POTS have the same quality of life as those with severe COPD or on dialysis. Maybe unsurprising from this is that the biggest killer of people with POTS is suicide. Getting ill can also prove more serious with POTS patients being at more risk of developing things such as pneumonia. Getting a cold can quickly turn into a hospital admission.

Some researchers predict people who have POTS caused by a virus are the most likely to recover and respond well to treatment. There is no cure for POTS but treatment can help to manage symptoms. If there is an underlying cause then treating that as well as possible should help to reduce POTS symptoms.

Originally it was thought that the majority of people would improve over time although a new study that was carried out over a longer period with a bigger group of people has partly disproved this instead showing that the majority did not get better although symptoms may improve.

What POTS means as an individual?

For me POTS has definitely changed my life. I am unable to tolerate sitting up or standing for long periods of time. My blood pressure is extremely low, on standing my pulse can go very high and my oxygen levels drop and my legs go purple while my hands stay their usual colour or I go very grey.

POTS has meant I now use a wheelchair to get around when I am out the house. I also have to have a LOT of salt in my diet to increase my blood pressure and have to drink a minimum of three litres a day to try and increase my blood volume.

If you’ve managed to make it to the end of this post and want to learn more about POTS, for Dysautonomia Awareness Month last year, this video was made which provides a pretty good outline of the condition. POTS video

London Calling

Last week I wrote that my week of tests had now been funded. Really strangely while my week of testing has been funded my appointment to get my results and plan next steps hasn’t been! So I’m facing having to go through the whole funding process again so I can find out my results and what I can do to improve. This seems really ridiculous and sums up bureaucracy at its finest. However I’m trying not to think about that too much for now and will worry about it when it gets to the stage of meetings.

However more positively I have had my inpatient stay confirmed now and I will be admitted in early November. I am absolutely terrified and also excited, which is a strange mix. I know the week is going to make me feel terrible as the whole purpose behind it is to trigger symptoms so that they can be recorded and measured. I’ve kind of signed up to feel especially rubbish for a while. However I’m really excited at the prospect of finally getting answers and knowing what is going on. Hopefully with that information I will be able to learn more about what I’m dealing with and there maybe be more treatment to make life manageable.

With my appointment letter came a further letter with a list of tests and instructions on how to prepare for them as well as length of time each one will take. Some last 24 hours such as a wearing a blood pressure cuff which will take readings every twenty minutes another one involves cycling and says it takes an hour and a half (now I know cycling for an hour and a half will be impossible for me!). Other tests require me to keep my hands warm before, the majority involve fasting for four hours prior and slightly horribly the majority also need cannulas- I’m hoping they’ll have more luck there then they do here at finding my veins! I’m being tested for many autonomic related things from breathing to heart rate to exercise tolerance to why I can’t manage to eat meals without feeling ill. Some of my blood samples will also be sent off round the UK to different specialised labs for testing (my blood is becoming better travelled than me!) It’s very odd to be going somewhere were they understand my symptoms and have finally found potential connections between them all.

I’ve booked sleeper train tickets which I’m pretty excited about. I’m hoping this will make the journey seem a lot better than the last one and it will be something else to tick off that I have done. I can’t really imagine what it will be like so shall have to wait to see.

I just can’t quite believe after these months of waiting I just have a few weeks to go until it is here!