My week

 

Over the last week I have been quite unwell, culminating in an emergency appointment at the doctors surgery yesterday. As is usual for me it wasn’t clear what exactly was wrong. I had severe abdominal pain in the lower right quadrant – I’m no stranger to abdominal pain, I have suffered with it for as long as I can remember. I can remember countless home visits by the gp where I was yet again diagnosed with a grumbling appendix.

 

I don’t think what I had yesterday was my appendix – its still sore today ( just not as bad). I think it is actually a cyst on my ovary, the doctors found one in 2015 but as it was only 2cm in size the protocol was not to monitor it. For years every few months I would get a pain in my lower right side. Loads of times I was convinced it was my appendix but after they found the cyst I realised that this made more sense. I started to track when I had the pain, it was always between the 20th to the 28th of each month and would last a few days. However over the last six months every two or so months the pain ramps up. I have a reasonably high pain threshold and it takes a lot to make me go to see the dr, let alone ring them up and demand an appointment. Normally I’m the patient running in the opposite direction.

 

Yesterday I couldn’t stand up straight when it was at its worst and when I was on the phone to the duty doctor I was curled up in a ball on the bed. I didn’t just have pain on the right side but the whole of my insides felt sore and were burning.  Thankfully the duty doctor agreed that I did need to be seen and set an appointment for an hour later. Thankfully Mr Myasthenia Kid was day off so he could drop me down there. I also had a pot to piss in ( ha ha ha ha!) my old gp used to give me a sample pot to use when I suspected I had a UTI. I forgot yesterday to ask for another one to replace it.

 

By the time I got to the doctors appointment the pain was already decreasing. I felt a bit of a fraud to be honest. Whilst I am typing the pain is ramping up again, I’ve taken pain killers so hopefully it will settle it again. I haven’t got a temperature and today I am not feeling unwell. I don’t feel right – I think all of us with a chronic illness or condition know when our bodies aren’t feeling right. Mine hasn’t felt right for a few weeks, initially I put it down to anxiety, stress, then the heat. But I know in my heart of hearts it’s more than that. It’s like the time I kept telling my old hospital consultant that I felt terribly unwell, I didn’t know what it was but he needed to listen to me. The arrogant twat didn’t, he sent me reluctantly for blood tests. Five days later I got a snotty letter telling me all my bloods were normal. Three days after that letter he had to backtrack because my prolactin levels were stupidly high. See I knew that something was wrong, never ignore your instinct about your health.

 

My urine was dipped and nothing was showing. I then had to get up on the couch and be examined. I knew it was coming, I made sure that front and back bottoms were scrupulously clean as I feared gloved fingers could be inserted into either orifice. Luckily I avoided that one! My stomach was palpated, as is usual the doctors always ask about the scar on my stomach. I’ve had a scar on my stomach since I was 3 and a bit. It’s been there so long that unless someone draws my attention to it I don’t remember it’s there. Now that will probably seem strange as it’s a horrific looking thing all thanks to EDS.

 

If I wasn’t such a lard-arse at the moment I may have taken a photo to show you. The scar runs from around an inch above my belly button to the top my pubic bone. It has healed very wide around an inch or more at the worst places and the skin is paper thin. I also have no sensation / feeling at all in my stomach about 2 inches either side of the scar as the nerves were cut ( I have had multiple surgeries). It’s caused me problems in the past due to burns. A few times I have ended up seeking hospital treatment as I have given myself a serious burn injury and not noticed until the skin has gone black. Like I said I have no feeling there.

 

The scar has also tethered at the end near my pubic bone. This means the scar tissue has adhered to the muscle underneath. It causes me no pain but means my stomach is divided into two parts due to the tethering.

 

I showed the doctor on my abdomen where the pain was, she felt it and I had to be peeled off the ceiling. At this point she told me that she wanted to ring the surgical team at the local hospital for advice as she felt it could be my appendix or it could be an ovarian cyst torsion ( meaning the ovary was twisting because of the cyst). Personally I thought with both I’d be in more pain than I was. I declined the call to the surgical team basically because I hate the local hospital. If I had been in severe pain, vomiting etc obviously I would have gone, I’m not an idiot. But I knew what would happen, lots of tests, no sleep, idiot medical professionals and sent home after being made to feel like a time waster. At this point all I wanted was my bed.

 

I made the doctor a solemn promise that should the pain intensify overnight that I would ring 999 and if it was bad tomorrow (now today) I’d ring them. She wasn’t totally happy but she knew I wasn’t going to hospital. I have to add here that even in that severe amount of pain my blood pressure reached the dizzying heights of 115/80 with a pulse of 95, oxygen 98%. When my blood pressure is normal ( doesn’t happen very often these days) when in pain I am normally in the 130/90 territory. So that just goes to show you how low my blood pressure has been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most doctors take my blood pressure and you can see that they are looking forward to giving me a lecture about my weight and high blood pressure. You can see the disappointment in their eyes when it comes back low! If my blood pressure is below around 115/80 I can be hideously symptomatic, every time I stand up I feel faint. This week I have been drinking expresso’s as it’s the only thing that gives my blood pressure a boost, even if it is only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how I was. That was really kind of her but I feel guilty for making her worry. It wasn’t a quick call either, she had a huge list of questions to ask to ensure I wasn’t brushing her off and telling her what I thought she wanted to hear. This is why I love the small practice I use as they have the time to care about their patients, it doesn’t feel like a conveyor belt. If you need longer than your allotted time then you get it and none of the other patients mind as they also know they won’t be rushed out the door.

 

My plan is when feeling slightly better that I will make a doctors appointment and ask to have this pain investigated. Personally I wouldn’t be surprised if my ovary is stuck to my appendix due to all the adhesions I have.  

 

I’ve been so rough over the last week or so I haven’t done very much in the way of sewing. I tried some hand sewing yesterday but couldn’t concentrate so gave up. Today I finished a Travis bag for one of my Instagram friends. Thankfully that was a quick bit of sewing as I had started it well over a week ago. I can’t put a photo up as she hasn’t received it yet. Jamie will be sending it tomorrow for me. The lovely lady and I have chatted a few times on IG and she asked me if she could send me one of her bags and give her an honest critique of her work, which is a bloody brave thing to do. The bag would be mine to keep. I couldn’t let her just send me a bag, as I knew she had a dog I thought I would send her a Travis bag.

 

This is the bag she sent me,

 

I absolutely love this bag. The quilting is amazing, she’s also used variegated thread so it goes dark and light which emphasises the quilting beautifully. I only wish that I could quilt as accurately as this!

Down the rabbit hole

What I have been holding my breath waiting for since the start of the year and all the bereavements we went through has finally happened. I knew at some point my health would be impacted and over the last 7 days it’s happened.

 

I’ve spent a few days in bed this week, purely because the chest pain on moving and the level of exhaustion was becoming unbearable. I really hate it when my health takes a nosedive as it can be months before I get back to where I was before. The same thing happened last year when we went through two bereavements in the space of 6 months. It took me from the May until the October to get anywhere near where I had been before.

 

I hate the feeling of helplessness and vulnerability this creates within me. I lose all motivation to do anything and just want to hide away from the world in the hope it will leave me alone. But it wont and I have to be a grown up and deal with the things that make me feel uncomfortable.

 

I am fed up with the professionals in my life telling me that my body’s  and minds response to this is normal, personally I’d prefer that they waved a magic wand and made it all go away. However I know it’s not going to happen so I just need to put my big girls pants on and get through this.

 

I am trying desperately hard not to fall down the rabbit hole and get seriously depressed. I won’t lie I am dealing with depression and anxiety at the moment. I have lost my sewjo, I have just been too exhausted and when I have tried to sew I’ve ended up with horrendous double vision. Sewing to me since October has been like breathing so to not be able to currently do it is frustrating. Hopefully it ( my sewjo ) will return soon and I will physically be able to do it.

Could it be Postural Orthostatic Tachycardia Syndrome – PoTS?

I posted this in August last year. Due to having a crazy week (Insomnia/painsomnia)  and a dentist’s appointment today I find myself too exhausted to write a new blog post.

I had one of those moments this week when searching through the archives of my blog I realised that I had never done a straight forward, honest to goodness post about PoTS. I may have mentioned it in passing but there is no one post based solely on it. I know that many people use my blog to try to explain their medical conditions to friends and family, so I am sorry its not happened until now.

My own diagnosis has moved away from “just” PoTs (although that is still part of it) and is now called Severe Autonomic Nervous System Dysfunction, which as far as I can tell is just a long winded way to say Dysautonomia. Which isn’t a medical term that seems to have caught on in the UK. All it means is instead of just the basic PoTs stuff going on I have developed O.I (orthostatic intolerance – my blood pressure drops in to the toilet on standing), breathing difficulties which have been with me since the MG/ not MG diagnosis, bladder problems ( I get acute urinary retention on a regular basis), unable to maintain my body temperature just to name a few. This is a new and emerging area of medicine and many medics are yet to catch up on PoTS let alone Dysautonomia. Straight away please let me direct you to this website pots.uk.org so if you are currently battling to get a diagnosis you can print this guide for gp’s and take this with you at your next appointment.

The first symptom I developed was sweating heavily when sleeping, be it a nap or a proper night’s sleep. That was back in 2006 and which I now know is reactive hypoglycemia (blog post) from monitoring my blood glucose levels. Throughout my life I had been told I had low blood pressure (not a prerequisite for PoTS as people with all levels of blood pressure can have it), I had a lot of dizzy spells, odd cravings for salt, palpitations. I put my palpitations down to anxiety, as I had always been quite an anxious person. However once my anxiety issues had been dealt with and I learned how to combat them I continued to be left with a feeling of my heart wanting to beat out of my throat on random occasions. I would also on a regular basis get very lightheaded when changing from a sitting to standing position.

So many patients with PoTS are misdiagnosed as having anxiety, health anxiety or depression or other mental health labels before they eventually get diagnosed correctly that it is criminal. Unfortunately once you have had the mental health label attached by the medics it is a hard one to shake off. Even now when going into hospital as an emergency, I still get somatiform disorder brought up when it has been completely and utterly disproven. The problem is that to an uninformed doctor PoTS can sound very like anxiety, racing heart rate, tremors the feeling of adrenaline coursing through your body and an exaggerated flight or fight response. With the majority of PoTS patients also being women it can be even harder to be taken seriously. It seems the modern medical profession still believe in the condition hysteria.

By the time I discovered the little known condition of PoTS, like many I had been written off by the medical profession as overly anxious, internet searching for syndromes with probable somatiform disorder. It took me over a year of battling to finally get the test that would prove beyond all reasonable doubt I had PoTS. A medical condition at the time my old gp had told me didn’t exist. For more info on my experience of the Tilt Table Test please click here as I don’t want to bore you by repeating myself.

My main symptoms at the time of diagnosis were as follows

  1. palpitations
  2. feeling faint or fainting (aka pre-syncope and syncope. Please remember only about 30% of PoTS patients faint but many feel faint)
  3. feeling like an elephant was sat on my chest and not being able to breathe properly
  4. racing heart rate every time I changed position, even rolling over in bed.
  5. greying out, especially after eating.  (My peripheral vision greys out)
  6. Insomnia (BIG TIME)
  7. Dizziness
  8. Migraines and shockingly bad almost migraines
  9. Cognitive deficit (aka brain fog /aphasia/ short term/long term memory problems)
  10. Chest pain (too many times to mention I thought I was going to have a heart attack)
  11. Reduced sweating (some people start getting excessive sweating, I only get excessive sweating at night)
  12. Fatigue

This list probably doesn’t cover all my symptoms and unfortunately many PoTS symptoms also merge into EDS symptoms as in the gut problems and bladder problems that many of us with both conditions have. It can get very difficult to differentiate the two. For a full list of symptoms please click here.

So what can you do if you suspect you have PoTS?

I can only base this on how I went about getting my diagnosis but it is the same advice I give everyone who asks my advice. 

Firstly get hold of a decent blood pressure monitor especially one that can also take your pulse at the same time. Here is a list of blood pressure monitors that have been validated by the British Heart Foundation as accurate enough to monitor your blood pressure at home. If you can afford it get one with a memory so it records your readings so that you can’t be accused of making the numbers up. It is important to understand that blood pressure does not play an important part in getting a diagnosis. Some people with PoTS have normal blood pressure, some have low and others have high. Why you need the BP monitor is so that you can start tracking your pulse and your blood pressure. If you can’t afford a blood pressure monitor for whatever reason, a pulse oximeter ( a little device than can read your pulse by clipping onto your finger) is the next best thing and you can pick them up online from as little as £10. 

Please remember people with PoTS tend to have very cold fingers (and toes) so before using a pulse oximeter ensure your fingers are warm enough to provide an accurate reading. Before my second tilt table test (yes I was stupid enough to do it twice) I had to sit with my fingers in a bowl of warm water as the pulse ox couldn’t get a reading.

Secondly understand what PoTS is!

PoTs is a rise in your pulse / heart rate of at least 30 beats per min (bpm) or hitting 120bpm or over, within the first ten minutes of standing. In children (up to the age of 19) the rise needs to be over 40bpm. If your heart rate doesn’t increase by 30bpm or over 120bpm within the first ten minutes of standing it is unlikely to be PoTS. 

When a normal person goes from sitting to standing their pulse / heart rate will increase on average by 15-20bpm. Within a minute or so their heart rate will go back to normal. A person with PoTS could start with a baseline heart rate of 80bpm and on standing increase to at least 110bpm. Then as they continue to stand their pulse could increase further. I know on my own tilt table test my own heart rate increased to 150bpm, unfortunately I don’t know what my baseline measurement was. Usually my pulse is in the 80’s and if that was the case I certainly managed the increase of 30bpm and smashed the 120bpm threshold.

Because many people (but not all) with PoTS also seem to have low blood pressure that is why I recommend getting a monitor. It helps to see what your blood pressure and pulse are doing after specific triggers such as climbing the stairs, raising your hand above your head, eating – particularly carb loaded meals. Many people with PoTS find their symptoms are much worse after eating heavy carb meals, so it is recommended to eat high protein low carbohydrate meals which don’t cause postprandial symptoms.

Thirdly conduct your own poor man’s tilt table test.

You maybe wondering what on earth is a poor man’s tilt table test, that is ok I was left scratching my head after first hearing this term on a forum called DINET. Because none of us own our very own tilt table designed for testing people for PoTS amongst other things, we can replicate how we will respond to the actual test by completing the poor man’s tilt table test and some gp’s who are PoTS savvy will do this in their consulting room or at the very least conduct a standing test.

To conduct a poor man’s tilt table test, you need somewhere comfortable and relaxing to lie down, without interruptions and preferably away from harsh or natural light. A wall to stand against which is adjacent to the relaxing lie down area however if you don’t have this don’t worry you can still conduct the test. You also need your bp monitor / pulse ox and a handy sidekick to record your test results. Also your sidekick can rescue you should you faint whilst completing this test so please be careful and do not attempt to complete it without having someone with you. Please also ensure that the area is safe should you decide to face plant, so free from things you could hurt yourself on. Cushions or pillows on the floor can help prevent injury!

To start the test you need to lie down and relax, no talking, no interruptions for 20 minutes. If you can darken the room in anyway before starting the test do. At the end of the 20 minutes with as little movement as possible take your blood pressure and pulse readings. These are your base line readings and what you will use to compare against the reading you get during the test.

Once you have your baseline readings stand as quickly as you can placing your back against the wall. The wall just helps prevent you from moving, people with PoTS tend to be natural fidgets because we either faint or feel like we are going to faint. Moving keeps the blood flowing, we don’t want you to do that whilst you are standing up as it may mess up the results. If you don’t have a wall to prop yourself up against try and keep your legs as still as possible.

Then at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 minutes take readings of your blood pressure and pulse or get your trusty assistant to do it. After the ten minute reading has been taken, sit down get your legs elevated and have a drink of water. You may notice that your feet / legs have gone a nice shade of red or purple. Don’t be alarmed this is called blood pooling and is very common with PoTs.

Now take a look at your readings if it shows an increase of 30+ bpm / 120 bpm this is positive for PoTS. Do not despair if it doesn’t show PoTS one negative poor man’s tilt table test does not mean it’s not PoTS, it may just mean you weren’t particularly symptomatic that day. Try to complete the test on a day when your symptoms are more evident.

Other things that might show during a poor man’s tilt table test are things like orthostatic intolerance ( your blood pressure goes below 90/60 on standing), you may have also fainted, if so I am sorry. The blood pressure readings could also reveal if you suffer from hyper-PoTS, which is where you have high blood pressure and PoTS. This needs to be treated differently to “normal” PoTS as most doctors will avoid giving you medication that will increase your blood pressure.

If you can’t for whatever reason do the poor man’s tilt table test you could perhaps try what is known as the standing test. Instead of lying down you sit down for 5 to 10 minutes to get your baseline pulse and blood pressure readings and then stand for as long as you can. Taking your readings at the same intervals as the poor mans test. This can also show PoTS. Remember PoTS stands for postural (position) orthostatic, tachycardia (fast heart rate / pulse), Syndrome (collection of symptoms and no two patients are alike).

What to do next?

Print off the gp’s guide from http://www.potsuk.org/gp_guide and book an appointment with your gp or a doctor at the practice who has been the most supportive. Sometimes these aren’t necessarily the same. Whilst waiting for your appointment take a look (if you are in the UK) at the Doctors list on the same website. This will give you an idea of who you can ask to be referred to, not all cardiologists are knowledgeable in the area of PoTS so it makes sense to see an expert, rather than someone who will give you the run around. For international readers DINET also has a Physician’s list.

If you have a disappointing gp visit and they still will not listen to you even when provided with your own test results and the gp guide, do not give up. Try every doctor at the practice if you have to and if that doesn’t work contact the practice manager. If you get no joy after all of that try reaching out to one of the many UK facebook PoTS groups. They have members all over the country and they maybe able to help you find a new gp practice with more sympathetic gp’s who are aware of the condition. 

If you have a disappointing consultants visit because despite your request of being sent to a specific doctor who is knowledgeable about the condition and you didn’t get to see one, you have a right to ask for a second opinion and ask once again to see one of the doctors named on the potsuk.org website.

You will get there in the end!

Most doctors will not confirm a diagnosis of PoTS without conducting a Tilt Table Test, ECG and possibly 24 hour blood pressure / heart monitoring. I was diagnosed on my tilt table results alone possibly because from 2007-2011 I had so many other investigations conducted they decided nothing more was needed.

The good news is that many people recover from PoTS especially if they have primary PoTS. Primary PoTS is usually caused by pregnancy, a virus, trauma or prolonged bed rest. Astronauts suffer from PoTS when returning to the Earth’s atmosphere and when their bodies re-adjust to the Earth’s gravitational pull their symptoms disappear.

Teenagers who develop PoTS also have a high chance of growing out of it. Researchers believe that teenagers develop PoTS due to the hormonal changes and growth spurts they are subjected to. Patients like these tend to grow out of their symptoms by their mid- twenties.

Patients with secondary PoTS, so PoTS that has happened due to a primary condition such as cancer, autoimmune diseases (like M.S, Lupus, Sjogrens), Ehlers Danlos Syndrome can also look forward to on the whole having the condition managed through medication and lifestyle changes (exercise, increased fluids, salt, adequate rest).

However I would be remiss if I didn’t state that there are patients like me that have refractory PoTS (it doesn’t respond to medication) and go onto develop more issues relating to our autonomic nervous system. We are the minority though not the majority. I don’t want to scare anyone who has just started on this journey I just want to be truthful.

My symptoms now are pretty much the same as when I first started on this journey with PoTS / Dysautonomia. I still have Ptosis on and off which no one has ever been able to explain. I still have issues with my breathing, fatigue, syncope and pre-syncope. A good day means that my heart isn’t continually feeling like it is fighting out of my chest on every change in posture. A bad day means not being able to sit up in bed without feeling faint, my heart rate not dropping below 100bpm even at rest. 

With my combined conditions each day is very much different with a new set of symptoms to overcome. It is exhausting, it makes me angry, it makes me sad and quite a lot of the time it makes me laugh because my body is just so screwed up!

One last thing…..if you are diagnosed with any type of tachycardia, including PoTS and you hold a driving licence you must inform the DVLA. You can do that via this Link. You will also need to contact your car insurance providers.

Another great source of information is Stars another charity which helps people suffering with a variety of conditions including PoTS.

Another Hospital Adventure Part Two

Last week I wrote about just the first 24 hours of my three-day hospital stay, if you missed it you can find it Here.. This week’s blog post will be about the remaining two days.

Day two

I woke up happy in the knowledge that Jay would be coming to visit me, we had feared had we not been able to arrange a sitter for the dogs he wouldn’t have been able to visit (thank you I.C).

 

Quite early in the morning one of my neurologists came to see me to give me the MRI scan results (which were negative) and to advise me that an anaesthetist would be coming to speak to me, he told me I needed to convince her to do the epidural blood patch. I should have realised then that she wasn’t on-board with it but it went over my head. He also discussed occipital nerve blocks (injections in the base of my skull) to see if that made any difference. If they didn’t it was more proof that the leak was real, he told me for the moment we wouldn’t be doing the caffeine infusion if I was getting a blood patch the following day.

 

Within about 30-40 minutes the anaesthetist popped around to have a chat. We spoke about my various medical conditions, the pro’s and cons of an epidural blood patch, the procedure itself and the protocols for recovery. The meeting seemed very positive and it felt like it was a go. Halfway through the meeting Jay turned up and he was able to give his input on how incapacitated I have been etc.

 

After she left we decided to have a coffee downstairs in the restaurant but as we were about to leave the neurologist came to see us and asked how the meeting had gone. We told him she had gone away to do some research ( and I had pointed her towards CSF Leak Association ), she would get back to me and that we both felt the meeting had gone well. He then asked me to go back to the ward as he wanted to do the occipital nerve block injections.

 

He did say the usual “short scratch coming” which at the moment still feels like the understatement of the year. I pride myself on my high pain threshold after having a lumbar puncture when the local anaesthetic had worn off, putting up with the most horrendous bowel adhesion pain for 6 months before they operated. Nothing prepared me for how painful this was. The doctor felt around the base of my skull asking which part was most painful and then injected local anaesthetic into that area. I was injected 4 times, the worst bit on the following three was knowing how sore number one had been. The pain made me sweat almost immediately and tears pricked my eyes. I have very colourful language and was mindful that we were on the ward, so managed to limit myself to the odd “Jesus Christ” and “Shit the bed”. I have no idea where shit the bed came from it’s not something I use ever but it helped.

 

The feeling of numbness was exceptionally weird, the back of my head felt like it was missing and the tips of my ears went numb. I was determined to go and have a coffee (and a fag to be honest) so immediately after the injections were administered I left the ward. As I had spent so much time lying flat I knew I would get an hour or so upright. My days are spent lying down so I can get the odd hour here and there to get stuff like having a shower done. It’s not a great way to live but it works for me at the moment and you have to play with the cards you have been dealt. At the moment I have an extraordinary bad hand but I am just waiting for a fresh deal.

 

Jay could only spend a few hours with me and they raced by. The times when I had visitors (my parents visited every day) went the quickest. The ward I was in was classed as short stay, essentially you were there until they could get you a bed on a proper ward, so patients were always changing over. By Thursday afternoon I was the only original patient left from those I was in with on Wednesday.

 

In the afternoon the anaesthetist returned, she caught me wheeling myself back from the toilet. Her opening statement was “You look better after those nerve blocks”. I didn’t look better, I didn’t look any better than I had done that morning. The only difference was the back of my head was completely numb. My head was still pounding every time I was upright. I knew with her opening gambit the news wasn’t going to be good.

 

She had decided that she wasn’t going to do the patch, she blamed the fact I had EDS (something I hate because ever doctor who refuses to treat me does this despite all the literature telling them the only difference in surgical approach is the closing of wounds. I find it incredibly lazy and insulting). To be fair I don’t really remember much of the conversation as I was crying so hard. She told me she thought the best thing I could do was be referred to pain management. She seemed to think that this was the perfect solution, me lying down for the rest of my life stoned off my bonce on pain meds.

 

I cried on and off for the rest of the afternoon. It was a mixture of anger and frustration, I knew I couldn’t tell Jay at this point because he had left thinking that the blood patch was being done the following day and that potentially I would be fixed. I rang my mum, who talked me out of self discharging, I can say truthfully if she hadn’t had been on the end of the phone I would have just packed up my belongings and got a taxi. I was so frustrated with it all that I couldn’t see the point in being separated from the dogs and my husband any longer. My parents drove across the city to come to see me and to give me the medical information they had printed off about CSF leaks and epidural blood patches.

 

I didn’t see any other doctor after the news that the blood patch wasn’t going ahead. I want to think it was because they were as frustrated as I was although the thought has crossed my mind that they had heard about me losing my shit with the catering staff and were in hiding.

 

I rang Jamie later in the evening to tell him that the epidural blood patch would not be going ahead. I managed to hold it together and not cry whilst I was talking to him. We were both exceptionally angry as we had been sold the hospital stay on the premise that I would have a blood patch, that I could possibly get better. He had lost a week’s holiday pay taking the time off. It was such a blow to both of us that we are still angry about it. I should never have been admitted if they didn’t have the anaesthetist on-board.

 

Day Three

I woke up in agony with my back and spent the usual amount of time begging for pain relief. I wish I was allowed to administer my own medications in hospital but as they are controlled drugs I am not allowed. So I am at the mercy of the nurses and how busy they are. My head was also really bad as I had spent too much time upright the previous day. I couldn’t lift my head of the pillow without intense stabbing pains. My eyes were also extremely sensitive to light so from 6am I was wearing sunglasses.

 

My back never copes with hospital beds and always causes me lots of problems. Quite often it will take me a good 48-72 hours to get my pain levels back under control after a hospital visit, which is simply ridiculous. In hospital I had been confined to my bed as I couldn’t sit in the chair as my head wouldn’t allow this. At home I can lie down on the sofa or on my bed and the changing surfaces stops my back getting too angry. However today I could quite happily rip my spine and surrounding muscles out as I am in agony with muscles that are in spasm. Pain makes me emotional and tired, which is not a good combination. Any tears in front of a doctor and you are immediately labelled as depressed.

 

I saw a different neurologist first thing in the morning who advised me that the caffeine infusion would be going ahead. In my notes the pharmacist had left a message informing the doctors I would need an ECG before the infusion. To which this doctor said I didn’t. Without a definite yes or no on the ECG my treatment was delayed further. All I was concerned about at this point was getting home and I was getting frustrated that no one was taking any action. By 10am I was washed, dressed and packed, that is how serious I was about leaving. I was also beyond exhausted, although I had been sleeping whilst in the hospital I was constantly being woken up by people being moved into the bay. My bed was right beside the door and no matter how careful the porters were my bed ended up being bashed by the door as they wheeled a bed through. It would hit the end of my bed so hard that the whole thing would shake. People were in and out constantly so my no matter what time of the day or night it was my bed was being knocked.

 

Between approximately 10-11am I saw my usual neurologist who apologised for the change in plan, he was as surprised as I was that the anaesthetist had refused to do the epidural blood patch. He assured me that he and the consultant would come up with a plan. (I have now been home two weeks and have yet to have had any correspondence with them.I know things move slowly in the NHS and I am one of many patients, it’s just life is particularly tough at the moment). The plan for today was that I would have an ECG and as long as that was normal they would go ahead with the caffeine infusion.

 

Our bay was being looked after by the dream team today and I am not being sarcastic. The two nurses we had and the health care assistants were brilliant, really funny, got stuff done quickly and were in and out all the time. In the two days prior to this we were lucky if we saw anyone at all for hours at a stretch. One of the nurses was the lovely lady who had come to my rescue on the first night when I had the issue with food (Cottage pie, Fish pie anyone?) and we had a male nurse as well. I don’t know who was more unlucky, me or the male nurse as he was the one going to be doing my ECG. If you have never had an ECG, they basically stick a bunch of sticky pads on your body in various places. It can be a bit embarrassing for all involved if you have a large chest (that’s me) as a lot of the stickers have to go around and under your bosom. Years ago I had a very embarrassed male nurse putting the stickers on and he could barely bring himself to touch my breasts to put the stickers underneath. Now when I have an ECG I grab the bull by the horns and grab them myself cupping them out-of-the-way to spare both our blushes.

 

As expected my ECG was normal and half an hour later the caffeine infusion was started. I was warned prior to it starting that if I got palpitations, felt weird etc I was to call for a nurse. I really didn’t think I would feel anything as I drink so much coffee these days as caffeine boosts CSF production. Some days the coffee helps a lot and other days it makes no difference at all. The infusion would take about two hours to run and after that I would be free to leave the hospital. It was a very long two hours!

 

Just as the IV was started lunch was served to our bay. The catering staff out did themselves, managing to give 5 people the wrong lunches and I ended up without one. When we tried to get the catering assistant to sort it out, she left the bay without speaking. We ended up calling a nurse to then get hold of the catering supervisor to sort the cock-up out. I eventually got my vegan curry, however the lady across from me who suffered from Coeliac disease couldn’t get a guarantee from the catering staff that her meal was indeed gluten-free. I on the other hand never ever want to eat curry again.

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Initially I felt nothing as the drip started. It was only on the 30-40 minute mark I started to feel strange. I felt like every muscle in my body was twitching or vibrating and I felt really buzzy. I started to get palpitations which I thought were more to do with postprandial hypotension or reactive hypoglycemia. I did call for a nurse and my observations were taken, my blood pressure was just bizarre 121/66 ( a wide pulse pressure of 55 should be nearer 30) and a pulse of around 75. So there was no need for concern and the infusion could continue.

 

As time went on I noticed that my head pain had reduced and I was now able to sit up without grabbing at my head. This effect lasted for 5 hours, believe me to be headache free for 5 hours was absolute bliss. It also reduced my head pain for the following 5 days. By the time the infusion finished I was sat up and no longer had to lie down. I had my sunglasses off because my eyes weren’t light sensitive and they remained that way for the  following 5 days.

 

I managed to leave hospital at around 3:30pm with a diagnosis in writing of Spontaneous Intracranial hypo-tension (SIH) or in layman’s terms a cerebrospinal fluid leak. I suppose even though I hated every minute of being in hospital at least I have that diagnosis, which has been backed up by the occipital nerve block injections and the results of the caffeine infusion.

 

We are still raising money via Help me walk the dogs again for a new wheelchair and power trike attachment so I am able to get up to Woodbury Common and walk the dogs again. We have now raised £1400 of the £5000 we want to raise. Hubby is getting his back waxed on 31st July and as you can see from the picture he is pretty hairy! You can sponsor him via my go fund me campaign. The waxing is being recorded and it will be released on YouTube and via my blog.

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Many thanks

Rach

 

Could it be Postural Orthostatic Tachycardia Syndrome – PoTS?

 

I had one of those moments this week when searching through the archives of my blog I realised that I had never done a straight forward, honest to goodness post about PoTS. I may have mentioned it in passing but there is no one post based solely on it. I know that many people use my blog to try to explain their medical conditions to friends and family, so I am sorry its not happened until now.

My own diagnosis has moved away from “just” PoTs (although that is still part of it) and is now called Severe Autonomic Nervous System Dysfunction, which as far as I can tell is just a long winded way to say Dysautonomia. Which isn’t a medical term that seems to have caught on in the UK. All it means is instead of just the basic PoTs stuff going on I have developed O.I (orthostatic intolerance – my blood pressure drops in to the toilet on standing), breathing difficulties which have been with me since the MG/ not MG diagnosis, bladder problems ( I get acute urinary retention on a regular basis), unable to maintain my body temperature just to name a few. This is a new and emerging area of medicine and many medics are yet to catch up on PoTS let alone Dysautonomia. Straight away please let me direct you to this website pots.uk.org so if you are currently battling to get a diagnosis you can print this guide for gp’s and take this with you at your next appointment.

The first symptom I developed was sweating heavily when sleeping, be it a nap or a proper night’s sleep. That was back in 2006 and which I now know is reactive hypoglycemia (Blog Post) from monitoring my blood glucose levels. Throughout my life I had been told I had low blood pressure (not a prerequisite for PoTS as people with all levels of blood pressure can have it), I had a lot of dizzy spells, odd cravings for salt, palpitations. I put my palpitations down to anxiety, as I had always been quite an anxious person. However once my anxiety issues had been dealt with and I learned how to combat them I continued to be left with a feeling of my heart wanting to beat out of my throat on random occasions.I would also on a regular basis get very lightheaded when changing from a sitting to standing position.

So many patients with PoTS are misdiagnosed as having anxiety, health anxiety or depression or other mental health labels before they eventually get diagnosed correctly that it is criminal. Unfortunately once you have had the mental health label attached by the medics it is a hard one to shake off. Even now when going into hospital as an emergency, I still get somatiform disorder brought up when it has been completely and utterly disproven. The problem is that to an uninformed doctor PoTS can sound very like anxiety, racing heart rate, tremors the feeling of adrenaline coursing through your body and an exaggerated flight or fight response. With the majority of PoTS patients also being women it can be even harder to be taken seriously. It seems the modern medical profession still believe in the condition hysteria.

By the time I discovered the little known condition of PoTS, like many I had been written off by the medical profession as overly anxious, internet searching for syndromes with probable somatiform disorder. It took me over a year of battling to finally get the test that would prove beyond all reasonable doubt I had PoTS. A medical condition at the time my old gp had told me didn’t exist. For more info on my experience of the Tilt Table Test please click Here as I don’t want to bore you by repeating myself.

My main symptoms at the time of diagnosis were as follows

  1. palpitations
  2. feeling faint or fainting (aka pre-syncope and syncope. Please remember only about 30% of PoTS patients faint but many feel faint)
  3. feeling like an elephant was sat on my chest and not being able to breathe properly
  4. racing heart rate every time I changed position, even rolling over in bed.
  5. greying out, especially after eating.  (My peripheral vision greys out)
  6. Insomnia (BIG TIME)
  7. Dizziness
  8. Migraines and shockingly bad almost migraines
  9. Cognitive deficit (aka brain fog /aphasia/ short term/long term memory problems)
  10. Chest pain (too many times to mention I thought I was going to have a heart attack)
  11. Reduced sweating (some people start getting excessive sweating, I only get excessive sweating at night)
  12. Fatigue
This list probably doesn’t cover all my symptoms and unfortunately many PoTS symptoms also merge into EDS symptoms as in the gut problems and bladder problems that many of us with both conditions have. It can get very difficult to differentiate the two. For a full list of symptoms please click here.
 
So what can you do if you suspect you have PoTS?
 
I can only base this on how I went about getting my diagnosis but it is the same advice I give everyone who asks my advice. 
 
Firstly get hold of a decent blood pressure monitor especially one that can also take your pulse at the same time. Here is a list of blood pressure monitors that have been validated by the British Heart Foundation as accurate enough to monitor your blood pressure at home. If you can afford it get one with a memory so it records your readings so that you can’t be accused of making the numbers up. It is important to understand that blood pressure does not play an important part in getting a diagnosis. Some people with PoTS have normal blood pressure, some have low and others have high. Why you need the BP monitor is so that you can start tracking your pulse and your blood pressure. If you can’t afford a blood pressure monitor for whatever reason, a pulse oximeter ( a little device than can read your pulse by clipping onto your finger) is the next best thing and you can pick them up online from as little as £10. 
 
Please remember people with PoTS tend to have very cold fingers (and toes) so before using a pulse oximeter ensure your fingers are warm enough to provide an accurate reading. Before my second tilt table test (yes I was stupid enough to do it twice) I had to sit with my fingers in a bowl of warm water as the pulse ox couldn’t get a reading.
 
Secondly understand what PoTS is!
 
PoTs is a rise in your pulse / heart rate of at least 30 beats per min (bpm) or hitting 120bpm or over, within the first ten minutes of standing. In children (up to the age of 19) the rise needs to be over 40bpm. If your heart rate doesn’t increase by 30bpm or over 120bpm within the first ten minutes of standing it is unlikely to be PoTS. 
 
When a normal person goes from sitting to standing their pulse / heart rate will increase on average by 15-20bpm. Within a minute or so their heart rate will go back to normal. A person with PoTS could start with a baseline heart rate of 80bpm and on standing increase to at least 110bpm. Then as they continue to stand their pulse could increase further. I know on my own tilt table test my own heart rate increased to 150bpm, unfortunately I don’t know what my baseline measurement was. Usually my pulse is in the 80’s and if that was the case I certainly managed the increase of 30bpm and smashed the 120bpm threshold.
 
Because many people (but not all) with PoTS also seem to have low blood pressure that is why I recommend getting a monitor. It helps to see what your blood pressure and pulse are doing after specific triggers such as climbing the stairs, raising your hand above your head, eating – particularly carb loaded meals. Many people with PoTS find their symptoms are much worse after eating heavy carb meals, so it is recommended to eat high protein low carbohydrate meals which don’t cause postprandial symptoms.
 
Thirdly conduct your own poor man’s tilt table test.
 
You maybe wondering what on earth is a poor man’s tilt table test, that is ok I was left scratching my head after first hearing this term on a forum called DINET. Because none of us own our very own tilt table designed for testing people for PoTS amongst other things, we can replicate how we will respond to the actual test by completing the poor man’s tilt table test and some gp’s who are PoTS savvy will do this in their consulting room or at the very least conduct a standing test.
 
To conduct a poor man’s tilt table test, you need somewhere comfortable and relaxing to lie down, without interruptions and preferably away from harsh or natural light. A wall to stand against which is adjacent to the relaxing lie down area however if you don’t have this don’t worry you can still conduct the test. You also need your bp monitor / pulse ox and a handy sidekick to record your test results. Also your sidekick can rescue you should you faint whilst completing this test so please be careful and do not attempt to complete it without having someone with you. Please also ensure that the area is safe should you decide to face plant, so free from things you could hurt yourself on. Cushions or pillows on the floor can help prevent injury!
 
To start the test you need to lie down and relax, no talking, no interruptions for 20 minutes. If you can darken the room in anyway before starting the test do. At the end of the 20 minutes with as little movement as possible take your blood pressure and pulse readings. These are your base line readings and what you will use to compare against the reading you get during the test.
 
Once you have your baseline readings stand as quickly as you can placing your back against the wall. The wall just helps prevent you from moving, people with PoTS tend to be natural fidgets because we either faint or feel like we are going to faint. Moving keeps the blood flowing, we don’t want you to do that whilst you are standing up as it may mess up the results. If you don’t have a wall to prop yourself up against try and keep your legs as still as possible.
 
Then at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 minutes take readings of your blood pressure and pulse or get your trusty assistant to do it. After the ten minute reading has been taken, sit down get your legs elevated and have a drink of water. You may notice that your feet / legs have gone a nice shade of red or purple. Don’t be alarmed this is called blood pooling and is very common with PoTs.
 
Now take a look at your readings if it shows an increase of 30+ bpm / 120 bpm this is positive for PoTS. Do not despair if it doesn’t show PoTS one negative poor man’s tilt table test does not mean it’s not PoTS, it may just mean you weren’t particularly symptomatic that day. Try to complete the test on a day when your symptoms are more evident.
 
Other things that might show during a poor man’s tilt table test are things like orthostatic intolerance ( your blood pressure goes below 90/60 on standing), you may have also fainted, if so I am sorry. The blood pressure readings could also reveal if you suffer from hyper-PoTS, which is where you have high blood pressure and PoTS. This needs to be treated differently to “normal” PoTS as most doctors will avoid giving you medication that will increase your blood pressure.
 
If you can’t for whatever reason do the poor man’s tilt table test you could perhaps try what is known as the standing test. Instead of lying down you sit down for 5 to 10 minutes to get your baseline pulse and blood pressure readings and then stand for as long as you can. Taking your readings at the same intervals as the poor mans test. This can also show PoTS. Remember PoTS stands for postural (position) orthostatic, tachycardia (fast heart rate / pulse), Syndrome (collection of symptoms and no two patients are alike).
 
What to do next?
 
Print off the gp’s guide from http://www.potsuk.org/gp_guide and book an appointment with your gp or a doctor at the practice who has been the most supportive. Sometimes these aren’t necessarily the same. Whilst waiting for your appointment take a look (if you are in the UK) at the Doctors list on the same website. This will give you an idea of who you can ask to be referred to, not all cardiologists are knowledgeable in the area of PoTS so it makes sense to see an expert, rather than someone who will give you the run around. For international readers DINET also has a Physician’s list.
 
If you have a disappointing gp visit and they still will not listen to you even when provided with your own test results and the gp guide, do not give up. Try every doctor at the practice if you have to and if that doesn’t work contact the practice manager. If you get no joy after all of that try reaching out to one of the many UK facebook PoTS groups. They have members all over the country and they maybe able to help you find a new gp practice with more sympathetic gp’s who are aware of the condition. 
 
If you have a disappointing consultants visit because despite your request of being sent to a specific doctor who is knowledgeable about the condition and you didn’t get to see one, you have a right to ask for a second opinion and ask once again to see one of the doctors named on the potsuk.org website.
 
You will get there in the end!
 
Most doctors will not confirm a diagnosis of PoTS without conducting a Tilt Table Test, ECG and possibly 24 hour blood pressure / heart monitoring. I was diagnosed on my tilt table results alone possibly because from 2007-2011 I had so many other investigations conducted they decided nothing more was needed.
 
The good news is that many people recover from PoTS especially if they have primary PoTS. Primary PoTS is usually caused by pregnancy, a virus, trauma or prolonged bed rest. Astronauts suffer from PoTS when returning to the Earth’s atmosphere and when their bodies re-adjust to the Earth’s gravitational pull their symptoms disappear.
 
Teenagers who develop PoTS also have a high chance of growing out of it. Researchers believe that teenagers develop PoTS due to the hormonal changes and growth spurts they are subjected to. Patients like these tend to grow out of their symptoms by their mid- twenties.
 
Patients with secondary PoTS, so PoTS that has happened due to a primary condition such as cancer, autoimmune diseases (like M.S, Lupus, Sjogrens), Ehlers Danlos Syndrome can also look forward to on the whole having the condition managed through medication and lifestyle changes (exercise, increased fluids, salt, adequate rest).
 
However I would be remiss if I didn’t state that there are patients like me that have refractory PoTS (it doesn’t respond to medication) and go onto develop more issues relating to our autonomic nervous system. We are the minority though not the majority. I don’t want to scare anyone who has just started on this journey I just want to be truthful.
 
My symptoms now are pretty much the same as when I first started on this journey with PoTS / Dysautonomia. I still have Ptosis on and off which no one has ever been able to explain. I still have issues with my breathing, fatigue, syncope and pre-syncope. A good day means that my heart isn’t continually feeling like it is fighting out of my chest on every change in posture. A bad day means not being able to sit up in bed without feeling faint, my heart rate not dropping below 100bpm even at rest. 
 
With my combined conditions each day is very much different with a new set of symptoms to overcome. It is exhausting, it makes me angry, it makes me sad and quite a lot of the time it makes me laugh because my body is just so screwed up!
 
One last thing…..if you are diagnosed with any type of tachycardia, including PoTS and you hold a driving licence you must inform the DVLA. You can do that via this Link. You will also need to contact your car insurance providers.
Another great source of information is Stars another charity that helps people with a variety of conditions including PoTS.
 
 
 
 
 

 

And Breathe part two

I am exhausted, I have been “normal” and been out of the house two days in a row and not for completely medical reasons.

For regular blog followers who don’t follow the The Myasthenia Kid on Facebook, my mum’s operation was cancelled on Monday 12th at 3pm, she has now been booked in on 28th April. So fingers crossed it is third time lucky. It is quite stressful waiting for her to have this operation. She needs it so desperately and the pain is so bad for her. Every day I worry she is going to have a bad fall and end up breaking bones. So we wait and hope that it will happen on 28th.
I had my dermatology appointment today for my dodgy mole. I had two dermatologists look at it and they are not concerned at all. I have been discharged from their service however if I have any concerns in the future I am to contact my gp. I have many raised moles on my body so I don’t think it will be the last time I will be seeing them. The consultant I saw was really lovely, the registrar was not very welcoming – not rude but you could tell he was either shy or just felt out of his depth with my medical history. Before even looking at the mole he was panicking about local anaesthetics as they don’t work very well on me. He asked me how I manage to have dental work, I told him most of my dental work is done at the speed of light as I burn through locals very quickly. He went quite pale.

He seemed quite unprepared as one of my moles I needed checked was in an intimate area. He asked me to undress but provided no blanket or gown for me to cover myself with. When I told him I wasn’t going to sit half-naked unless I had something to cover myself up with he quickly went and got me a gown. I was really surprised that he thought this was ok, when moments earlier he was asking me if I needed a chaperone, despite my husband being in the same room. It seemed he was more interested in keeping himself protected than protecting my dignity!

As both my moles were ok we were in and out in around 15 minutes. I had booked a dog sitter for 4 hours – just in case, so hubby and I were furbaby free (furniture would not be eaten and the dogs would not be serenading the neighbours). We headed off into the city to have a mooch around the shops. It was the first time we had been out of the house together for a non medical reason for probably 6-12 months. No that wasn’t a typo that’s how long its been. I actually can’t remember the last time we were out together alone.
I also went out yesterday for non medical reasons (as in no gp or hospital appointments). My friend H took me out to the local garden centre. It was quite a big deal, as previously when friends have taken me out I have used crutches or my sticks rather than my chariot. I have a really big issue about my friends seeing me in my wheelchair or me needing them to push me. Yesterday marked the first time ever that I had been out in my chariot with a friend. I was very nervous about it. H needed a crash course on assembling the chair and she picked it up like a pro. I decided that I was going to propel myself as doing that means whomever is with me can walk along side me and chat rather than have me have to turn around and speak to them. You don’t think about these things until you are in a wheelchair.
As its been a while since I have been out in my chair I had forgotten exactly how wheelchair unfriendly the outside world is. I managed to leave a nice black line down a newly painted white plinth because it was just a few millimetres too small for me to get past comfortably. I also managed to destroy one Wellington boot stand. Normally that would leave me mortified but for some reason it drove me to hysterics. I wasn’t even embarrassed that I had knocked it over. Poor H had to hurriedly pick them up whilst I negotiated an even tighter right turn. Luckily that was the extent of the damage caused.
I stayed out for 2 1/2 hours (go me!) it left me utterly exhausted. I went to bed for two hours when I got home but as usual when I have been out I return wired tired / amped. My head is buzzing from the excitement of being out of the house my body is wanting to melt down. I battled on until 7pm and then crashed spectacularly, falling asleep, well actually it was more of a horrific postprandial episode that I didn’t come around from until 10pm and then it was only briefly.
For some reason the postprandial collapses are worse than normal and due to one starting right now I am going to leave this and come back when it’s over!

Ok so I am back its is getting a bit boring now having to rest / collapse every time I eat. It has been really awful since yesterday. My heart pounds so hard in my chest it feels like my ribs are going to shatter. I become unbelievably tired as my blood pressure drops, today I recorded 79/40 just before I had to go to sleep as I couldn’t stay awake any longer. It seems to start my heart off in a funny rhythm where it pounds in my chest for the rest of the day grrr!

Anyway I digress both yesterday and today I have had a lovely time in the outside world. It makes a change from the four walls I normally view. I am beyond exhausted and I feel like I am having an out-of-body experience.

My own hospital appointment for a week of tests has been pushed back until May at my request. There was just too much going on this month for me with mum’s operation, my dermatology appointment and my sisters scan for her baby. There was no way my blood pressure was going to be my normal low, it would be raised with the stress of it all.

So I am a very tired but happy bunny today. 

A general update

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

Octreotide:
In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.

B12:

I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.