HOT

 Well b*gger me it is HOT here in the UK at the moment. Now I know the rest of the world laughs when anyone in the UK says it is hot but please remember heat is relative to what you are used to. Also because our Summers are traditionally not that hot, 24 degrees Celsius is probably about average. However this last week temperatures have been rarely lower than 28 to 30 degrees Celsius making it unbearable for me  and for poor Dembe.

In the UK we don't do air conditioning unless it is in a shop or a very fancy home. Air conditioning units are beyond a lot of peoples means at around £350-450 upwards. Our homes have been insulated to within an inch of their lives. Meaning they stay hot no matter what doors and windows are thrown open. Believe me I have tried the keeping the windows closed and curtains drawn during the day to keep the temperature down but it didn't work. It ended up even more suffocatingly hot than usual. We have the loft hatch open in the hope that it gives the hot air somewhere to go. But other than living in my refrigerator I am just soldiering on.

The heat and Dysautonomia do not mix, I can't regulate my temperature on the best of days so dealing with this unrelenting heat is a nightmare. Standing up my vision is greying out, I have upped all the medications I can to try and retain fluids within my system but it still isn't enough. I am ending up wetting my hair multiple times a day to get my body temperature down and get some relief. I have got so fed up with it this week that I have bought some freezer blocks to keep me cool during the day. At night we are using hot water bottles that have been filled with cold water and frozen during the day. This at least is helping us sleep. Sadly though my sleep is being interrupted by heat induced migraines.

I never used to suffer with migraines caused by the Summer heat until last year when I got an absolute shocker of a migraine on the Whitsun bankholiday ( a national holiday on the first Monday of June). It happened to be the first day that was very hot and I had spent a lot of time outdoors. I put it down to day drinking and being dehydrated. However the same thing happened this year and there had been no alcohol involved. I had been out in the sun a lot as it was the day Jay and his brother scattered their fathers ashes on Dartmoor, I had spent the time with his mum out in the garden. Again the migraine that followed was another shocker.

It is so frustrating when you get a migraine due to the weather as stopping it happening is out of your control. I have now ordered some freezer blocks from Amazon to freeze and then use during the day to keep cool. Every night for the last three days I have ended up going to bed with a migraine either brewing or in full swing. Last nights was particularly bad as it came back again at around 3am. I woke up to a world of pain as my whole face felt like it was being smacked with a shovel. Thankfully it did ease off with the help of sumatriptan which has been a game changer with my migraines and it makes me angry that despite me visiting the gp practice on numerous occasions this wasn't offered to me until 2020 when my migraines were making me lose 48 hours of my memory. Which was incredibly scary.

Dembe has also been suffering with this heat, we have had to cancel his Wednesday afternoon walk this week that he adores with Sophie, Beth and the gang as it is just too dangerous to walk him as it would be risking heatstroke. Sophie did offer to walk him in the morning but as Jay is home and he would walk him at 5am there was no point. During the day because Dembe simply refuses to use the garden to go to the toilet, even a wee (!) Jay has been taking him to the shaded lane that runs near our house. Dembe gets hosed down before and after and Jay always checks the temperature of the tarmac before walking him to ensure he doesn't burn his feet. I am glad he is that much older as he is less fizzy and will sleep during this heat.

To help him with the heat we bought him a splash mat, I think Jay enjoyed it more as Dembe seemed deeply suspicious of it, only going on it when the jets were off.

He really enjoyed splashing around in the water that had collected in the pool. I am happy as long as he is enjoying himself and staying cool. He also likes lying down in the shade on the flag stones on the patio.

We hose this down regularly to ensure it is lovely and cool for him.

We may get a slight reprieve over the next few days as we have been forecast heavy thundery showers. I really hope so as we do need a short break ( at least ) from the onslaught of the heat.

**

There will be no blog post over the next two weeks as Mr Myasthenia Kid is on leave from work and we are planning on spending the time together whilst there are some contractors here doing some work on our house.

The best dog

One of my favourite sayings about dogs is,

Everyone thinks they have the best dog.

And none of them are wrong.

W.R Purche 

Dembe since coming home with us on 11th January 2019 has proven time and time again that he is not just the best dog but an exceptional dog. Highly intelligent and intuitive especially when it comes to matters of my health. It started when he was very tiny. He would some how know that I had a migraine and would lie quietly beside me with his face pressing against the side of my face that was hurting due to the migraine. He wouldn't leave my side unless dragged away. I just put it down to him being impossibly cute but there are so many instances over the last 12 months that have made me realise that his behaviour isn't just a fluke but something very real.

Around 3 weeks after we brought Dembe home I came down with a chest and sinus infection. I was floored by it, it was probably the closest I have come to feeling like I had the flu without having it in a few years. Dembe would have been around 10-11 weeks old and full of beans. Due to the fact we were still toilet training him I couldn't go to bed, I simply didn't have the energy to be going up and down the stairs every 30 minutes ( I couldn't have done that on a normal day let alone this). So I would lie on the sofa counting down the hours until Jay would be back home so that I could crawl into bed.

A pup of this age is normally a live wire, yes they sleep quite a bit but when they are awake they are into everything. Normally Dembe would have been, however he seemed to know that I was poorly. Instead of running around playing with his toys, for 4 days straight he would lie on my feet or chest up on the sofa and sleep, as I slept. At the time I thought it was odd that such a young pup would alter his behaviour so radically. As soon as I started to be on the mend the crazy pup came back and yes sometimes it was a little too much for me as I was still feeling pretty rough but to contain all that energy for 4 days whilst I waited for the antibiotics to kick in was pretty weird.

 At the time I just put it down to a fluke, that I was projecting and seeing what I wanted to see after losing my beloved nurse Frankie. 

There have been a couple more instances over the year, where it was clear that Dembe was picking up on health stuff to deal with me. We have had a couple of dog training sessions where Dembe has wanted to just get back to me where normally he will quite happily ignore me. One night I was sat quietly on the sidelines when I suddenly lost the vision in my right eye, I knew I had a migraine brewing but as there was only 30 minutes left in the lesson I didn't see the point in making a fuss. In the end I did have to speak up though as Jay and the trainer couldn't understand why Dembe wasn't focusing on the lesson like he normally would and all he kept doing was looking back at me or attempting to get back to me.

We had the same thing happen a few weeks ago during an agility training session. Out of nowhere earlier that morning I had been hit by vertigo. I had taken my medicatiom to attempt to stop it in its tracks but my head was still spinning. I was having to be careful how quickly I turned my head. Dembe again was really unsettled, every time he was off the leash he was back at my side. One of the fellow spectators commented on it and I just said "It is because he knows I am not feeling well, he gets very protective of me if he senses something isn't right." I then went onto explain something that had happened just a week or so earlier.

To the uniformed observer this way look like a cute photo of me and Dembe having a cuddle. Although it was cute and comforting it couldn't have been any further from the truth. I had been feeling not quite right all day. Jay had just gone back to work after coming home for lunch when I had the strongest feeling that I was going to pass out ( even though I was sat down, you see I can pass out in any position it is my super power). Initially I tried to fight it by clenching my buttocks and calf muscles in the hope that this would get the blood circulating. However when I started yawning ( this is a key indicator that my blood pressure is dropping rapidly) I knew I was going to have to get myself to the floor as quickly as possible and then get my legs raised. Dembe was asleep beside me on the sofa.

I quickly got myself down on the floor and got my feet up on the coffee table. I expected Dembe to sleep through this. Instead he got up and then curled up beside my head resting his face against my face. Normally when I lie on the floor this signifies play time. I was fully expecting to be licked, trampled on and toys dropped on me as he would think this would be part of the game. However he didn't move he just snuggled beside me, I took the photos after I had been down on the floor for ten minutes as I couldn't believe that he was doing this. I tried to get up but he wouldn't let me, he had me pinned to the floor for a good 30 minutes. If his face wasn't against my face he was lying on my arm making it almost impossible for me to move.

What I find incredible is this is not something I have ever taught him to do, this is something he has done on his own. He was also just 14 months old when he did this, he is now 15 months old.

I still find it hard to believe that he is so in tune with me that for whatever reason he knew that I was very unwell at that time and needed him to look after me. Feeling that ill, whilst alone is scary. Thankfully I had my mobile phone on me as the top I was wearing has  what I call a kangaroo pouch pocket. I always try to wear clothes with pockets so that I always have my phone. I managed to get in touch with Mr Myasthenia Kid and explain what had happened I got really tearful when I explained what a wonder Dembe had been. He asked if I wanted him to come home but I said until I knew if I could sit up or not unaided there wasn't any point. Around 30 minutes after I first hit the deck I was able to sit up, resting my back against the dresser. Another ten minutes later and I made my way up to bed and spent a few hours lying down . Again Dembe behaved beautifully, he just came up to bed with me and slept beside me.

Which if you had ever met Dembe you would know what a normal active, annoying pup he can be. Who regularly crawls onto my lap and knocks the chromebook from my hands because it has been at least 15 seconds since I gave him a cuddle. Who throws his crocodile toy, well any toy of his choosing that day around the lounge and to hell with the consequences. So to adapt his behaviour on his own accord is really quite amazing to me.

This is what I am battling against at the moment trying to write the blog post

 He is not a quiet pup, he isn't massively high energy but if he wants your attention he has ways and means of ensuring he gets it. Who could resist that face peering around the computer screen.

I thank my lucky stars everyday that we were lucky enough to have Dembe choose us to be his human parents.

I do feel like I need to point out that just because of Dembe's unique ability doesn't mean I love our previous dogs Travis, Mollie, Willow and Frankie any differently. Life will always be marked in sections before the Weims, after the Weims. Life goes on but it goes on around a huge Weimaraner shaped hole. And it always will. Dembe is not a replacement but our boy and the beginning of a new chapter. He is currently our best dog, same as Frankie, Travis, Mollie and Willow were when they were with us.

Truth v Gossip

There is one thing that I have found since having several chronic health conditions that people simply do not understand and that is the fatigue levels that come with them. I know some people have created this fairy tale in their heads that either have withdrawn from society or that Mr Myasthenia Kid doesn't let me out in the world. People stupidly believe this gossip rather than actually ask me. They are simply untrue, the reason I don't go out very much is because I get so exhausted by doing very little outside the home.

At home I have an environment I can control. I have regular household sounds, lighting etc. All of which my body is used to. The minute any of that becomes too much I can go to bed, lie down, limit the light and sound. Out of the home I have zero control over the additional stimuli my body is bombarded with. Also these days I am using a scooter a lot of the time, the concentration levels involved in driving this even for a short period of 20 minutes, drains me. It makes it hard for me to manage a conversation and drive. The minute I don't concentrate like when driving a car accidents can happen. I have almost gone off the sea wall down at the seafront because I was trying to talk and drive. It takes a lot out of me and unless you have to balance your activity and rest periods people just don't understand it.

Since Sunday I have had an extraordinarily busy week, for me. For normal people this will probably sound like a leisurely few days. On Sunday we went to Pets at Home the big one so around 20 minutes in the car to get there. Then we went to Tesco to upgrade our phones which took about an hour. We had Dembe with us who behaved beautifully. There were lots of people in Tesco that I knew that haven't seen me since I have lost 49lbs in weight and who also wanted to meet Dembe. So it was very busy. After the morning we had around 90 minutes sit down and then we went to visit friends with Dembe. It was lovely to see them both and Dembe really enjoyed his visit too. However by 6pm I was completely drained and was up in bed resting, before dropping off just after 8pm.

Many of you will be thinking how can that low level of activity wear you out? I wish I knew, my only explanation is the assault on all my senses just physically and mentally wears me out. The extra noise, people, lights, smells, physical activity of driving a mobility scooter. Being upright with my legs down and blood pooling, changes in temperature, all those things combined just zap any charge that was left in my batteries. On Monday it took me hours to get moving. I was fit for nothing until about 2pm, which is crazy. My body just felt like there were 15lb weights attached to each limb and my head, well I just couldn't really focus on anything that demanded more than a limited amount of mental acuity. 

On Tuesday I felt a lot better as I had spend Monday recuperating, which again if you have never suffered from bone crushing levels of fatigue you would struggle to understand. We needed to take Dembe to the vets to be weighed and to get his worming tablets / flea / tick treatment. We were there around 20 minutes as we like to have a catch up with the staff as Dembe is very popular there. We then popped up to Tesco for a few items, we took Dembe with us to give him some more environmentalization training. We only needed three things but Dembe has such a huge fan club amongst the staff and customers that it took 40 minutes. I then spent as much of the afternoon as I could resting with my feet up as in the evening we had our first night back at our weekly dog training class.

Evenings are the absolute worst time for me to be out of the house. Purely because I go to bed every evening between 7pm - 8pm or earlier if it is a rubbish day. By then I struggle to hold myself upright, co-ordinate my movements and as I discovered last night I can also end up struggling to talk because my brain can't channel the words to my mouth. Ending up with me looking like a fish out of water. I thought I would be ok, after all I did the dog training in the summer. But I don't think I had been out as much during the day. The dog training lessons are intense. Even though I just sit there and let Jay do all the training. I can't do the walking around or being up on my feet that much. 

I coped ok in June and July so it was really surprising ( and frustrating ) to me last night to get half an hour in and to start feeling really, really unwell. I don't know about anyone else but I hate having to ask for help or potentially making a scene due to being ill. I have in the past been known to wait for everyone to leave the room before I have allowed myself to projectile vomit. Thankfully there was nothing for anyone to see, although I may have gone more pale than normal. I just suddenly had the internal organ sinking feeling, then felt I experienced some feelings of dissociation. I knew I was in the room but I didn't feel I was part of it. Unless you have felt this it is a difficult feeling to explain. I can feel like this just before I faint and I knew that is what my body was preparing to do. As I was sat down I rapidly starting clenching my bum cheek and tensing my calves in an attempt to get the blood moving. The whole time I was absolutely terrified I was going to wake up surrounded by people having taken a nosedive from the chair.

The weird thing was I could see poor Dembe trying to alert Jay to what was happening as hit lay down on the floor and had his head turned to me. He was watching ensuring I was ok. When I spoke to Jay afterwards to let him know what had happened he said "why didn't you get up and go to the car so you could lie down?" which is a reasonable enough question as normally I do have quite a bit of warning so I can avert a faint. I just said to him that I felt so bad I was terrified if I stood up that I would go down with a bang. He then said "well why didn't you shout me?" the simple fact of the matter was I just didn't want to do anything that would draw attention to me.

 I really HATE the spotlight being on me, I hate it even more if it is because I am having a funny turn or have fainted. It is stupid I know but I just can't, it makes me feel so very uncomfortable. Like I am causing a nuisance or being melodramatic. This probably goes back to various incidents at school and at work where I have been seriously unwell and been called a drama queen or that I was causing a scene. When I was younger I was never believed when I was sick, even when I have had major surgery, I had work colleagues say I was doing it for attention. How on earth you get a team of NHS surgeons to open you up from pubic bone to sternum just for fun I have no idea but apparently I can.

Thankfully my funny turn went after 10 minutes but it left me feeling seriously drained. I spent the entire journey home yawning non stop which is always a sign that my blood pressure has dropped. I was in bed by 8pm and asleep by 9pm.

Today ( Wednesday ) I am seriously pooped but like I always say I'd rather be knackered due to going out and having fun or just living a normal life than being this wiped out from doing nothing. Again it has taken me all morning to get going. I have been up since 7am and it is only now at 13.30 that I am starting to feel human and that I can do anything that needs any mental clarity. On days like this I have to take advantage of any window of opportunity when I feel well enough physically and mentally to be able to get up and crack on with something I want to do.

Obviously having the Weimaraners did curtail my activities outside the house. It was too expensive to get dog sitters in all the time and there are only so many times you can ask friends to do it for you. They were too destructive to leave by themselves, so in the end it just became easier to not go out or just one of us go, than stress out about finding someone to stay with them. Our friends have been fabulous, Imogen looked after them so much in 2015 when I had my CSF leak. If it hadn't been for her I wouldn't have been able to attend half the appointments I did. She also looked after them when we went to the Emma Bridgewater factory for the day which was a 14 hour (plus) stint . My friend Sharon also did us a massive favour when she stayed with them so that Jay could appear on Sewing Quarter TV. Both Ellie and Heather have stepped up too and looked after them, along with Tracey, Sarah and so many others over the years. But even with that massive pool of helpers it wasn't fair to continually ask them to look after them. So our outside activities took a back seat, plus a lot of the time I just wasn't well enough.

Now we have Dembe and we are training him to be my assistance dog it means the whole world has opened up to me again. It is really weird after having 12 years of not really going anywhere but the hospital, the doctors surgery or the dentist. Those visits also wiped me out. We are so used to being home we are having to force ourselves to go out. Which is another reason why we are doing all the training with Dembe as it means at least once a week I will leave the house and also that he will be a well behaved assistance dog whom we can take everywhere with us. But I will always have to pace my activities. I will never be well enough to go out all day, every day of the week. I just don't have the stamina or physical reserves to be able to cope with that. And that is fine with me. I do quite like my own company and being able to do the things I want to do. I guess I am saying I like a balance.

So when someone tells you that someone is a recluse or that they aren't allowed to go out. Have a good long think about that person's circumstances. Think about if they have a chronic health condition, suffered a bereavement all manner of things that could be the cause of them not being outside in the world as much as you think they should. Don't take the easy option and accept the gossip no matter how credible the source because it is just that their take on what they "think" is happening. Which doesn't make it the truth.

A hard week health-wise

The last week has been really hard health wise. I haven't been the sickest I have ever been but I have certainly been sicker than I have for a while. There is no "reason" that I can identify for this other than perhaps the decline in my health that I have been waiting for since we lost Mollie and Frankie. Stress, emotional upset and change can all upset my chronic health conditions and it seems everything wanted to bubble to the surface last week. I did just power on through which now I am wondering if that was the right thing because I am having more and more MG like symptoms this week - shortness of breath, limb weakness etc sorry I should have said my idiopathic hemifacial spasm the latest bullshit diagnosis for my Ptosis, totally ignoring all the other issues.

If I am honest there is only one symptom that has me terrified and that is when I will suddenly and for no reason lose the ability to take a deep breath. No matter how hard I try to suck the air in my chest fails to move. I end up taking a series of short breaths to minimise the panic that rises in me. I have an elephant sat on my chest who is refusing to budge and I know that if I went to hospital my breathing would be ignored and I would be labelled with a mental health condition rather than the fact that there is something going on at the neuromuscular junction which has been proved time and time again with the ice-pack test. Apparently for the latest neurologist I have seen for these symptoms back in 2017 I believe, it is just a placebo effect. Words fail me.

Sunday freaked me out a bit as well. I wasn't feeling great when I got up and knew there were a couple of jobs that I had to do, then I could sit around and rest for the remainder of the day. Once those jobs were completed I noticed my legs had become exceptionally heavy, like there were lead weights attached. I could walk but it was very slow and shuffling because lifting my feet was taking a supreme effort. I attempted to climb the stairs but that was impossible. I may as well have been sat at base camp for Mount Everest without oxygen, as those stairs were impossible. After attempting three I came back down on my bum and then wondered how the hell I was going to stand up again. Thank god for Mr Myasthenia Kid being home and with it happening on a Sunday. He could help me to my feet and get me to the sofa, plus organise my medication. 

You see I get to take Mestinon / Pyridostigmine Bromide for my PoTs symptoms. I usually dose as follows 7am 60mg, 11am 30mg, 3pm 30mg or 60mg depending on how I am feeling and then 30mg at 7pm. I have to be careful with Mestinon by body is extremely sensitive to it. Too much and I can be twitching all over but mainly my face and it can trigger terrible stomach cramps. It takes a lot for me to take another 60mg during the day but at both 11am and 3pm I ended up taking the full dose because without it my legs wouldn't work. My legs not working is not a PoTs symptom, it isn't an EDS symptom either. There is no medical explanation for this symptom, other than the fact the medical profession believe its all in my head. Which is why when my breathing gets difficult I panic. This medical condition that appears so much like MG / Neuromuscular junction disease will be ignored and it could end up killing me. I am lucky, my symptoms are mild but I have bouts like this especially when the weather gets warmer where my body fails to cope. I worry one day I will be so ill that the doctors refusal to think outside the box will mean that I will be killed by medical negligence and that is a fucking scary thought.

I mean if there is nothing wrong with my breathing......why have I had home oxygen since 2009? In the current economic climate of ongoing austerity since 2010 why if I don't need support for breathing on occasion why has this precious money wasting resource not been taken from me? Home Oxygen can't be cheap,  I have an oxygen concentrator a machine that pulls oxygen from the air and then feeds it down a nasal cannula at a purer form. In case of power cuts I also have to have a huge oxygen canister in the house, I have to notify the local fire-brigade and I am classed as a vulnerable service user by the people who maintain the power grid. The canister also impacts my home insurance cost. If I didn't need it I would get rid of it, not only are the canister and oxygen concentrator ugly they are taking up valuable space in my small home. So in an age of cuts to all services who is covering their arse by allowing me to keep my home oxygen? 

Home Oxygen won't save me if I end up in a full blown Myasthenic crisis. This is where the muscles around the lungs and the diaphragm become paralysed and can't move so you can't get the air in as when you attempt to breath nothing happens. In this situation you need to be in hospital on C-pap or Bi-pap or in the worst case scenario put into an induced coma whilst they ventilate you - sticking a tube down your throat and breathing for you ( intubation ).  Today as I am writing this the elephant has returned, breathing is hard. I took my mestinon at 7.30am already my right eye is starting to droop, its seems I may have to take my next dose earlier.

The Myasthenic like symptoms are the worst thing I currently deal with and I am lucky they are mild the rest of the time. Last week was like a smorgasbord of every medical condition I have. My PoTs symptoms were crazy - heat induced despite me upping the salt tablets ( to 8 a day ) there  were multiple episodes of pre sycope ( near fainting). I had vertigo luckily I caught that attack very early so I only had to endure the room spinning for an hour but it leaves me tired and feeling out of sorts. I had a migraine on Friday one of the worst I have had in months. It was actually the first migraine I have had since January 14th ( my last one was the Monday after Dembe came home with us). My Tinnitus has been so loud it has been difficult to hear the TV and radio. I have felt constantly exhausted .

Then there was the joint pain and my right shoulder continually fighting to escape it's socket. To be honest I have only scratched the surface of what I have dealt with over the last 7 days. I really don't like to say much most of the time because I don't want to be accused of moaning but if I stay silent about it people think that you aren't as sick as you claim you are. You just can't win, you're an attention seeker if you say something and a liar when you don't. It drives me nuts. I stay silent because to be honest it is easier that way. I don't want Jay aka Mr Myasthenia Kid worrying about me when he is at work, I don't want lots of platitudes on social media. It isn't because I think they are false it makes me feel like I am drawing attention to myself and trying to play the sympathy card and that's just not me. 

It's been really hard this week being a puppy mum, I love Dembe dearly, I wouldn't be without him but it is hard work trying to keep him occupied whilst using as little energy as possible. On the whole he is brilliantly behaved but like it is with kids there are days when he can be a little bugger and whilst amusing, it can be frustrating, especially when you aren't feeling well. He is just a puppy though at a little over 6 months old and over time he will calm down. I guess I was so used to Mollie, Frankie and Willow being older and more sedate this has come as a real shock. Jay does loads, he gets up and does his breakfast, he does all the walking and he comes home everyday for lunch to give me a little break and check I am ok. I take my hat off to those of you who are chronically sick and have children, I don't know how you do it.

It has been a hard week health-wise, I just hope things start to settled down very soon.

Sh*t

My fear of the dentist has become sort of legendary on the pages of this blog. It's now no longer a fear `but has evolved into a phobia, which would be fine were it not for the fact that I can see in my future lots of dental work being needed. Which fills me with dread.

The phobia really took hold last year, I was sat in the waiting room and I could hear the sound of a dentists drill going in one of the consultation rooms. As I heard the drill sick reached the back of my throat and I started to sweat. I felt incredibly light headed and I had to fight the urge of just getting the hell out of there...if indeed my legs would have worked. 

I have never had a very good relationship with dentistry. I have a high pain threshold everywhere apart from my mouth. I am incredibly sensitive even a dentists tool checking my teeth can trigger sharp nerve pain. I often wonder if I have more nerves in my gob than the average human being? I also wonder if it is because you are so vulnerable lying their unable to move or communicate effectively that my fear or phobia has now taken grip. Pain happens at every dentist visit, even check ups. My reaction gets the same response from whatever dentist I see, they simply don't believe that their action has caused me pain or discomfort. To be constantly told that your pain isn't real by the people who you are supposed to put your trust in just erodes it over time. I'd love to say that as I have got older my visits to the dentist have got better...they haven't and now a week Friday I will be going for my first extraction since 2003.

Last year in May I was told I needed a filling. Instead of stopping there my dentist in his friendly way that he was probably taught at university as a way to talk to patients then gave me every minute detail of what he would do to fill the tooth. You see the tooth was decayed beyond saving. He would remove all the pulp you know the bit where the nerve sits, clean it out and then fill the tooth. Panic coursed through me as he continued to give me every last detail. You see for this patient the more technical detail I know the worse it is. My heart rate his risen just typing this, even though I know that he won't be doing this to my tooth next week. Remembering the appointment still fills me with horror.

I duly made an appointment and the earliest I could get was July. Which was crap because it meant I had a two month wait in which to build to complete hysterics. I was all set for July 12th and then the week before the appointment the dental surgery rang and cancelled. My head was all over the place as that was the same week my mum had been told she had cancer but what type and how bad wouldn't be known until she was operated on. They offered me an alternative date but we had visitors coming so I said I would ring them back and make an appointment. I never did.

I won't lie it was easier just to forget about the dentist than deal with it and just get it done. That is when I knew that my fear had turned to a phobia because rational sensible Rachel should have taken over and just bit the bullet and got the filling done. Instead I have endured a year of toothache on and off and the fear of developing an abscess.

When my husband had a phone call to prompt him to book an appointment I asked him to book mine as well. I didn't want to go but the pain in my tooth was becoming more severe. I'd rather go and get the tooth pulled than wait to get an abscess ( I've had an abscess before it took three months to sort out as I developed a dry socket). A dry socket is agony but that is still preferable to me than hearing the drill go whilst it is inside my mouth.

So yesterday despite the mounting panic rising within me I went to the dentist. The dentist tried to tell me off about not coming back for the filling so I just told him my mum got diagnosed with cancer and that I just forgot. I didn't forget I just chose not to remember. He shut right up and apologised. I then told him that the tooth that needed a filling now needed to be removed and that I wasn't taking no for an answer. He tried to tell me that he wouldn't remove the tooth if it didn't need to be taken out. So I told him either he did it or someone else would. He was quite shocked as normally I am really polite and don't say boo to a goose - always being terrified that being rude would cause more pain. I explained the tooth had been giving me toothache at a low level for months and that I just wanted it out. It is right at the back of my mouth and its being missing will make no difference cosmetically. He said he would take a look. So with my heart beating out of my chest he lowered the chair.

He took a look at it and asked me again if I wanted it removed to which I said yes. He informed me that the tooth was now fractured right down the middle. There is very little left of my actual tooth as it is being held together with a filling. He said due to the state of it he would remove it for me but he would need to keep an eye on the tooth in front of it as that had developed some decay and would need a small filling. I immediately jumped in and told him I didn't want any detail. Small filling fine I can live with that. I just don't need to know what that entails.

I was quite surprised during the appointment to find out I still have a fully erupted wisdom tooth. I was under the impression that they had all gone when I was a teenager as I had a few removed due to them trapping a small piece of gum between the wisdom tooth and the next tooth as they erupted. That piece of gum would then balloon forming like a pink bubble that would then cause horrendous pain. So all my previous wisdom teeth had been removed at the dentist. He explained that the wisdom tooth was showing signs of decay and due to its position it would be nigh on impossible to put a filling in. This again would need to be watched as it would need to be extracted. I don't know if he means by him or if he meant I will need to have to have it done at the hospital. News to me anyway that I have an erupted wisdom tooth.

I was in and out on that appointment, I booked next weeks appointment and then went out into the fresh air. My legs had turned to jelly and I felt pretty close to passing out. Which isn't nice when you are alone and waiting for hubby to get the car. I thought ( I don't know why) they had a bench outside and was going to park myself on that. They didn't so I had to balance myself against a wall in such a way that if I did pass out there would be minimal damage to me.

Two hours later and my legs were still jelly and I was still feeling like I was going to vomit. Just from the feeling of panic that a visit to the dentist will produce. Jay kept telling me how brave I had been to attend when I hate it so much and for stating my case for getting the tooth pulled. I didn't feel brave I felt awful. Its a difficult feeling to describe. You know logically the fear and how it controls you is out of proportion to the event but you can't help it. There is no logic to it and it isn't a case of talking yourself down. For me it is a whole body reaction, I feel faint, I feel like I am going to be sick, I find it difficult to speak, my legs turn to jelly and feel like they will crumple under me at any moment. The whole time my brain is screaming "Shit get out of here". My heart rate well is probably close to the 200's the way my chest feels and all the while my exterior maybe cool and showing none of the inner turmoil / fear that I am feeling.

Maybe that is the problem? It seems no matter how many times I tell people I am terrified of the dentist, it is dismissed with "well nobody likes the dentist". But it is just so much more than that. I will be honest last week when my tooth was really sore I contemplated going to the kitchen shit drawer getting a pair of pliers and removing my own tooth. Just so I could avoid going to the dentist. If you think that is normal behaviour for someone who doesn't like the dentist... then you have a screw loose.

My gp tried to help and told me there was CBT online courses I could try to get over my phobia / fear. I told her I was sure there was but when your own dentist fails to appreciate how much going to see him fucks you up then me doing all that work is pointless. It's not like I can up and change dentists any time I like it took us years to get an NHS dentist when we moved here. Many of them now have closed lists. So it simply isn't a case of moving and finding a more sympathetic one. However Jay spoke to his dentist that morning and she said she would accept me onto her list if I wanted to move. I am giving my dentist one last chance. If he blows it this time I will be taking her up on the offer of moving within the practice.

I quit........smoking

Mr Myasthenia Kid has managed to pass on his sickness bug to me. He ended up coming home from work on Monday after vomiting twice. He spent the rest of Monday sleeping. I spent last night going from freezing cold to boiling hot, my hair is crazy this morning. I am also horrendously nauseous. So today’s offering will be short and sweet.

On 6th August I packed in smoking tobacco, over the previous couple of months I had slowly been falling out of love with it. It no longer tasted the same, smelt the same, I was smoking more but enjoying less and less. Because I rolled my own cigarettes I was also getting stained fingers which meant several times a week I was having to bleach them to get rid of the tar stains. I knew the time was approaching where I was going to give up. I just didn’t know if I would be able to do it.

At the same time as I was falling out of love with cigarettes, a friend of mine had given up smoking. Something I never thought in a million years would happen. She had bought a vape and literally swapped over from smoking 20 plus a day to none and solely using the vape in a few days. She brought the vape over to show me and a week later I bought myself one. With the intention of slowly reducing the amount of cigarettes I was smoking and using the vape.

I really struggled to get on with the vape, for some reason every time I inhaled I coughed my lungs up. I don’t know what was causing the problem but it was infuriating, why could I inhale cigarette smoke and not inhale from a vape. It took a few days of persevering but I got the hang of it. I was coming to the end of my tobacco and after the first cigarette of the morning on Sunday 6th August I decided that was it. I had enough tobacco for one cigarette but I just put it away in the cupboard. I haven’t smoked since.

A few days after stopping smoking I threw my tobacco tin away, bagged up the papers and filter tips which I bought in bulk and removed the ash trays from the house. We only ever smoked in the kitchen, but the difference in the surfaces keeping clean without me facing a losing battle daily against bits of ash and tobacco was enough to convince me, it was over. Jay took my papers and filter tips into work and gave them to my friends that smoke.

Giving up and switching to the vape has been easy, far easier than I thought it would be. I much prefer it to smoking. Over the last few days I have found that I am using it a lot less than I was initially. I did experience some problems with my blood pressure being quite low for a few days whilst my body sorted itself out. I gave myself a week for it to settle and if it hadn’t I would add a nicotine liquid to my vape to boost my blood pressure. Thankfully the giddiness and feelings of pre-syncope reduced and I managed to not use nicotine liquid.The other issue I have had is really painful sinuses.

I’ve had sinus problems for years. I regularly use a nasal spray as the inside of my nose gets inflamed and causes problems with my eustachian tubes swelling shut. Since stopping smoking I have been in a lot of pain with my sinuses, at some points it has been going into my teeth. I have no idea why giving up smoking would make it worse when I have always been told that it would make it better. It’s still hurting today but it is getting less as the days go on. I am hoping that this will eventually settle down.

I know that I will never be able to take for granted that I no longer smoke. I have stopped for years in the past only to start again. I will need to be constantly vigilant and be honest with myself that whenever I want a cigarette it is the addiction talking. So far it has been much easier than I ever anticipated it would be, I hope it stays that way.

Eventful

On Thursday 1st December I had my 6th Caffeine infusion. To say it was eventful would be an understatement. What has previously gone ahead pretty smoothly other than being unable to cannulate me without multiple attempts was littered with potentially dangerous errors. I am still in shock to be honest.

Over the few days leading up to the infusion my head was letting me know it was long overdue. By the time Thursday came around my head pain (from a csf leak) was reaching a 7 out of 10 on the pain scale within seconds of getting upright. By the time I reached the ward I was dry heaving, which happens when the pain gets to a certain level. I had felt sick before leaving the house and had taken my anti-sickness medication hours earlier but they had done nothing. All I was relying on to prevent me from blowing chunks were deep breaths and they were becoming ineffective.

On arriving at the unit I advised them of the fact I wanted to be sick, several times. My request for anti sickness medications went unanswered so I demanded a bowl as I didn’t want to puke all over myself when I didn’t have a change of clothes with me. In every other hospital situation I have been in when I have told staff I needed to be sick they have sprung into action. Here I was asked by one member of staff if I had a hangover, I don’t drink, well it’s easier to say I rarely drink. I had drunk two bottles of Budweiser the night before as my head was bad and it was a last resort but it wasn’t enough to give me a hangover. I calmly explained to the member of staff, the same member of staff I have been seeing since June (every month) that when my head is bad I will be sick. He knows who I am as he then asked me how my birthday had gone and laughed about the fact Mr Morris had booked me a dentist appointment on my birthday. So he could remember that but not the issue that I come in and see them for every month.

This time it was on my notes that I had to have an ECG, whilst wiring me up I was given a sick bowl. The battery was out on the machine so the nurse had to get a new one. Whilst she was gone I dry heaved into the bowl, bringing up no more than a couple of teaspoons worth of saliva. The dry heaving was automatic, I had no control over it, yet when the nurse came back she demanded I lie still so that she could do the ECG. Believe me it gets worse. Anyone with a modicum of common sense would have sorted out anti-sickness medication so that I didn’t want to dry heave during the ECG but no she was getting the ECG done and I wasn’t to interrupt with anything so petty as throwing up.

Finally after what seemed like an eternity I was presented with two tablets in a paper cup. I looked at them and I don’t know what happened but I asked the nurse what it was. A lot of the time I wouldn’t do this, many patients don’t and just assume what they are being given is correct. So let this be a lesson to you, accept no medication without asking what it is. Nurses / doctors are only human and make mistakes. The nurse told me it was ondansetron, a medication that I have suffered a hideous allergic reaction to when given via IV in 2014. Now this nurse (same one as the ECG nurse) had just put my red wrist band on, the one that alerts staff to the fact the patient has allergies so they must check their notes before issuing medication.

I carry with me at all times a mini medical file which contains the latest letters from my consultants, my prescription list (I can print off from the doctor's surgery) and a list of my drug allergies as I have quite a few. Every time I arrive at this unit they ask if I have allergies, I give them the list, they scan it and the same receptionist tells me every time that I won’t need to bring it with me next time. On Thursday she just asked if I had allergies and printed off a red wrist band. I assumed that the allergy list was in my notes. After I pointed out I couldn’t be given ondansetron she checked my notes and surprise, surprise my allergy list wasn’t contained within the file. So my hospital buddy Sharon found it in my bag and gave it to her. Sharon was sat in shock that potentially this nurse had nearly just killed me. Sharon is a veteran of hospitals and said “I never ask what they are giving me, I just assume it’s right”. I told her over the months of me coming to the unit I had heard them give patients ondansetron as the anti-sickness medication of choice. It is probably the cheapest and I don’t blame them for that but not everyone can take them and before issuing a patient wearing a red wristband it might be an idea to check their allergies. If they don’t ask you demand to know what medication they are trying to give you. I don’t want to sound melodramatic but I might not be alive today if I hadn’t have asked the question on Thursday.

As I couldn’t take ondansetron, I was given cyclizine a medication I have taken numerous times before with no issue. In their wisdom they gave it to me in tablet form despite me telling them I wouldn’t keep it down. I had stopped drinking at this point despite my tongue sticking to the roof of my mouth as I was so dry. When I tell you that I am not going to be able to keep a medication down I am not pissing about or trying to be difficult. They ignored me, so I took the tablet and promptly threw it up much to the nursing staffs surprise.

I won’t lie I had come into hospital on Thursday fully expecting a fight with a nurse I shall refer to as Dick. Dick seems to have a problem with my wheelchair and will move it away from my bed and put it in the next room claiming it’s in the way. As my chair will cost £2,500 to replace I have an issue with it being left unattended. He even has a problem with my old wheelchair insisting it is folded up and moved away from the bed. He also won’t provide my hospital buddy with a chair let alone my husband so they always use my wheelchair.

Sharon had witnessed this nurse's behaviour during my last caffeine infusion. She knew from our conversations over the last month that I wasn’t going to accept this from him this time. To me it seemed to be disability discrimination, he also has a problem with the walking stick I bring to help me transfer from my wheelchair to the bed. I was fully ready to get PALs involved if he kicked off this time. Much to our disappointment  Dick wasn’t on the ward when Sharon moved me through into the unit so by the time he came back from his break, she was fully ensconced in it, at the foot of my bed using it as a chair. We were pissing ourselves as we could see he was seething that we had got it past him. This entertained us greatly whilst we were there and the junior doctor we spoke to who managed to cannulate me first time whilst I was waiting for the cyclizine to come. Although he didn’t say it in so many words he also thought Dick was being a dick about the wheelchair.

The room in which I receive the infusions is pretty small, it has six beds and then a desk by the door where the nurses and doctors do their admin work. I don’t know which doctor it was that had to do the prescription for IV cyclizine but he was kicking off that they hadn’t done it IV to begin with when I was telling them I wouldn’t keep the tablet form down. So someone in there does have some common sense. I also heard the same doctor getting excited about my ECG asking the nurses who was in with sinus tachycardia, the nurse dealing with me told him “she’s always like that and we aren’t treating her for that”. Poor lamb had only wanted to help and was asking the question as to why my heart was racing whilst I was lying down still during an ECG, now we will never know as PoTs is only supposed to occur with changes of posture, I hadn’t moved for ages at the time the ECG was done.

Finally after what seemed like forever I was given IV Cyclizine. Within a few seconds of the injection being finished I really didn’t feel very well. I must've turned a funny colour too as Sharon told me I wasn’t looking very well. I suddenly felt very panicky and was worried that the nurse had just given me Iv Ondansetron. I just about managed to tell Sharon that my chest was tight and I felt woozy. Within seconds I was battling to remain conscious, my eyes were rolling in their sockets, unfortunately no one could see this as I had my large very dark glasses on as I become very light-sensitive when my head pain is bad. I felt myself falling as I slumped to the right hand side of the chair. For the briefest of moments I blacked out only coming around as Sharon was screaming my name and shaking my leg trying to rouse me. I couldn’t respond as I was still fighting to stay awake, I couldn’t focus on anything as my eyes just kept wanting to disappear into the back of my head.

Eventually the nurse realised something was wrong and whacked the bed back so that I was flat and then took my blood pressure. By the time she got her reading 109/73 I was feeling more or less with it again. She was trying to excuse herself for not noticing the fact I had passed out by telling Sharon and I it was because I was wearing makeup and sunglasses. I think the biggest clue was I wasn’t responding to Sharon and had slumped to one side. She did tell us that Cyclizine can crash your blood pressure which was obviously what it had just done. What she failed to tell me was that it would repeatedly crash my blood pressure for the remainder of my time in the unit. You’d think that she would have monitored me regularly after that episode but she only took my vitals once more and that was just before I left, nearly three hours after the faint.

I have faced some scary times when in hospital but that has to be one of the most frightening because I was shit scared the nurse had killed me by giving me IV Ondansetron and who can blame me with her laissez-faire attitude towards protocol.

I spent the rest of the infusion time trying very hard not to faint. Throughout the infusion despite the extra fluids going in, I kept feeling like I was going to pass out. I kept feeling like I was having an out-of-body experience. I knew if I fainted again there was a high probability of me not being allowed home, so I drank loads and kept being completely upright to an absolute minimum.

I only let Sharon know how bad I was feeling so that she could place herself in front of me should I try to face plant.

Despite how awful I felt I did have a good time during the infusion, it’s always great to catch up with Sharon, we always have something to say. Plus I got to catch up with a doctor who I thought I had lost forever to the acute stroke ward. He knew I had been to Bath the week before (it wasn’t a great appointment and all they will do for me is write a strongly worded letter to tell the hospital to get on with the blood patch as there is no increased medical risk) and we talked about the clinical trial that he wants me to be a part of. Its called a Sphenopalatine ganglion Block, it's basically a small catheter type device placed up your nose, which they then use to squirt a dose of local anesthetic up. It works on a group of nerves at the back of the nose and has good results in conditions like chronic migraines, trigeminal neuralgia and facial pain. This doctor and my neurologist want to trial it to see if it is effective for pain caused by a CSF Leak and I am more than happy to give it a go if it has a chance of stopping my pain completely.

I let this doctor know that last month’s occipital neuralgia nerve block injections had been ineffective. I told him although the nurse that does them maybe highly qualified she doesn’t do it the same way he does, which is multiple small injections along the occipital nerve. He agreed due to the fact the last lot hadn’t worked he would repeat them for me, if he came back from his meeting before I left the unit. Thankfully I was still there on his return and the injections he gave me have worked beautifully.

I have very little memory of the rest of Thursday, Friday and most of Saturday as my blood pressure wouldn’t settle and kept crashing after the cyclizine injection. I have had to piece the events together from Sharon and my husband. I don’t think I have ever been made so sick from a trip to hospital.

Due to the incident with the nurse ignoring my red wrist band and attempting to give me a medication I am allergic to, I have had to report the incident to the hospital. I have wrestled my conscience and I wouldn’t be able to live with myself if another patient ended up being given the wrong medication due to protocols not being adhered to. It could make things very difficult for me in the unit but I couldn’t live with the thought that  by not making a complaint it contributed to someone else coming to harm.

So last week’s Caffeine infusion was eventful to say the least.

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.