Too Darn Hot

I’m just going to break rank and say it, something that us Brits are known to do which is to complain about the weather, here goes……..It’s too darn hot!


Now for those of you who experience really hot temperatures in the USA or Australia for example must be laughing your heads off, as our heat wave temperatures are nothing compared to yours. Most temperatures in the last 6 days have been above 30 degrees celsius (86 fahrenheit), this is a rare (ish) event in the UK with average June temperatures normally being around 21-24 degrees celsius (69.8-75.2 fahrenheit). It’s also all about what we are used to and we Brits are not used to this at all.


I have been suffering since last Thursday as my blood pressure decided the best thing to do when faced with this heat was crash. When I eventually bothered to measure it, the first three times my blood pressure monitor read error, which means it’s too low to read. When I did get a pressure (probably because I was getting stressed from it not measuring it) it read 83/50. No wonder my heart was going like the clappers every time I moved let alone went from sitting to standing. I ended up spending one day in bed, whilst I waited for my medication to kick in. I had to re-start taking midodrine, a medication I don’t like taking because of the awful side effects I get with it but nothing on the side effect front compares with not being able to stand without fainting. At the moment it’s a case of the lesser of two evils.


It’s not just me that is struggling with the heat at the moment, my poor pooches are miserable with it. On Monday afternoon I was very concerned about Frankie, as although we had been inside all day he started to seem quite agitated, he started pacing and panting very heavily. Thankfully there had been lots of information shared on social media and I suspected he may be starting to suffer with heat stroke. I immediately started wiping a wet cloth over his belly, Weimaraners are pretty much hairless there and then I poured cool water over his back. He stood there and let me do it, which is most unusual as unless it’s a really muddy, yucky puddle on a walk he won’t go anywhere near water.


On Tuesday I decided from around 11am onwards that I would cover him in a wet tea towel




And that worked a treat he was much happier. The girls however were a nightmare and point-blank refused to have anything put on them. As soon as I put a wet tea towel on them they would stand up and shake it off. So I decided to make a bandana type thing for them out of wet tea towels. As they have quite big necks it took a couple of attempts to get enough slack in the tea towel so I could tie it safely around their neck.





So the above photos show you how I folded the tea towel to accommodate their neck size.


They will tolerate these, it’s great as you can just take them off and get then get them wet again whenever you need to. Plus they can wear them when out on their walks and it helps to keep them cool.


The wet tea towel bandana dog fashion as modelled by







Exhausted is an overused word however it is the only way I can describe the state I find myself in. Yesterday (Tuesday) was my trip down to Plymouth to see my new consultant, (after I got rid of the one who accused me of spending too much time on the Internet looking up syndromes to have) and catch up with family and an old school friend. 

The appointment went really well however due to two road traffic accidents in Plymouth which caused complete gridlock in the city, the rest of my plans went awry. The traffic was so bad it actually took us an hour to get out of the multi storey car park at the hospital. With my husbands blood pressure slowly climbing and me rapidly fading, I had visions of the red cross coming to our aid as I couldn’t see how on earth we were ever going to get home. It took us over two hours to get back to my parents house, a journey normally of 20 minutes to pick up my medication and various other bits and bobs that I had left there before setting off for my appointment. We then had another hours travelling time to complete the journey from Plymouth to Exmouth. All in all yesterday I spent over 4 hours in the car. This catastrophe was not in our plans and being in the car so long has caused my legs to refuse to work properly and climbing stairs is now an endurance sport which has to be completed by shuffling up the stairs on my bum. What a glamorous life I lead!

So my blog post this week will not be a long one, when I say that it just depends how much I can write before crashing completely. I have got up very early to compose this post because the worry of not having it completed was keeping me awake. I do like to have something to worry about.

As usual I suffered very badly with pre hospital visit jitters which meant a pretty much sleepless night Monday into Tuesday. I woke up at 02:30am and didn’t get back to bed until gone 9pm, I have woken up at 4am this morning. This is just begging for a Meniere’s attack to happen, which I can already feel building up. I had been told by numerous people that the doctor I was going to meet was lovely but in the back of my mind there was a niggling doubt that I could be the one patient that he wasn’t nice to. You see my neurologist I saw many years ago was treated like a god amongst the Myasthenia Gravis patients, not a bad word was said about him. The problem was that he was a consummate performer who was very nice to your face but had a nasty habit of writing utter shite about you in his notes. The neurologist treated me very badly and I highly suspect that it was him that diagnosed me with somatiform disorder. So I guess you could say we (both hubby and I) have trust issues when it comes to doctors.

When the doctor called my name in the waiting room, I had my back to him due to the lack of space provided for wheelchair users (that is a rant for another day that hospitals seem to be so unfriendly towards wheelchairs). When I turned around to face him, there was a look of shock on his face. He then said something like “you need no introduction, I can see the family resemblance”. This Dr treats my sister also and due to that has also met my mum. People say that we all really look-alike but I just don’t see it. Yes we look like each other but it’s not (to me) like we are clones! So that was nice as he hadn’t seen my sister for a few weeks but he recognised me. My last consultant also saw my sister but never actually acknowledged the link between us despite me referencing her on more than one occasion simply because we have a lot of the same symptoms.

The new doctor was really friendly and open to ideas. In fact he brought up stuff that I had on my list of the most important things to discuss with him. My list read as follows

1. Mast cell activation disorder

2. Fluid intake

3. Stomach / bowel problems / adhesion’s

4. Alice in Wonderland syndrome or Todd’s syndrome as it is also known. This would be brought up if I was feeling brave enough as I have never mentioned it to any doctor before in case they thought I was nuts.

As it happened one of the first things we talked about was the Alice in wonderland syndrome. This was due to the fact he brought up the Myasthenia Gravis / Ptosis / Nystagmus and breathing issues. He doesn’t think I have MG, he thinks my Ptosis (droopy eyelid –You can see a picture of it here) is being caused by hypoperfusion (so not enough blood flow to my brain, essentially low blood pressure in my head). I brought up the fact that when I have Ptosis or MG symptoms my blood pressure is normal but he quite rightly pointed out that it doesn’t mean my blood pressure is normal locally (as in my head the pressure is low). I can’t argue it makes sense, mestinon or pyridostigmine bromide as it is also known raises blood pressure, if the blood pressure is low in my head the mestinon would have the effect of raising it. I did mention about the ice pack test also being positive and that is an indication of a problem at the neuromuscular junction. He said he felt it was possible that both my sister and I had issues with the ganglionic receptors in our brains. As I told him I roughly understand that but much more and it goes over my head.

As we were talking about MG symptoms I brought up the nightmare of 2013, when I had all the constant nystagmus and the weird visual symptoms that lead me to believe I have Alice in Wonderland syndrome. He agreed with me that it sounded like I did indeed have this, what shocked me more was the fact that he had heard of it and didn’t treat me as if I was a complete loon, when I was describing watching birds flying across the sky only for them to rewind and do it again.

He also believed I could be suffering from another weird syndrome that causes sudden desaturation (not enough oxygen in your blood). He did tell me what it was but its name was far too long for me to remember. He told me at the start of the appointment that he had only had a quick look at my notes however it soon became clear that the poor man had taken an in-depth look at them and had already come up with a treatment plan.

Due to my exhaustion I can’t remember the exact flow of the conversation and what we talked about next and in what order. So I will be brief and explain what I can remember.

My excessive fluid intake would come under psychogenic polydipsia, as I do not have diabetes insipidus. He thinks that title is harsh because I have had excessive thirst ever since I was a baby and I could in no way be able to form a habit of drinking too much from that age. So there is something wrong with the hypothalamus part of my brain that controls thirst but we will probably never know what.

He believes I have Mast Cell Activation disorder just from reading my notes and looking at the strange reactions I have had with many if them. The closest I have come to full-blown anaphylaxis was when I had CT contrast dye injected. It’s an experience I don’t want to repeat. I was also able to show him the blotches that had come out on my neck that very morning, despite not eating / drinking or doing anything different. Due to the Mast Cell Activation Disorder or MCAD for short he wants to change my Betahistine that I take for Meniere’s disease to Cinnarizine (stugeron). As MACD is caused by histamine the Betahistine will not be helping me and by strange coincidence since taking it I have noticed that my skin has become much more reactive. He isn’t convinced that I have Meniere’s disease, I am, so he is requesting a copy of my audiology notes as they hadn’t been included in the file that was sent to him.

He thinks a lot of my stomach / bowel / adhesion issues are being triggered by MCAD. If we could get the MCAD under control it maybe that we can get those issues under control. The adhesion pain has been quite bad since the 29th November. I am having sudden onset of really sharp pains which take my breath away and leave me doubled over. As fast as they come on they go again.

The weirdest revelation of all was that he doesn’t think I have PoTs……….. He believes that my problems stem from my blood pressure being all over the place, my heart (or brain you could say) is responding by beating faster in an attempt to keep my blood pressure elevated. He wants to do another tilt table test, I have politely declined for the moment just due to the fact how ill I was after the last one.

He was incredulous that I had never had an echo cardiogram ( a bit like an ultrasound for your heart) to check that it was actually working ok and that I don’t have  a mitral valve prolapse. This should be a standard test that is carried out of everyone who has been diagnosed with EDS. For some reason my last consultant didn’t think so and I can’t seem to get my gp to move forward with this probably because I have so many problems it just gets overlooked. So my new doctor is going to ask that I get one done. If I don’t get it he will arrange for it to happen in Plymouth.

So due to his theory on it being my blood pressure causing the tachycardia he has started me back on Midodrine at 2.5mg once a day for a few days to then increase it to twice a day, then three times a day. Then I am to slowly get myself up to 5mg three times a day. We all hope that by slowly titrating it I won’t react as badly to it as I did the last time when I ended up with awful bladder problems and adhesion pain. 

When we talked about the bladder problems, I brought up the possibility of Fowler’s Syndrome. When I brought this up with my last consultant this was when he accused me of looking things up on the Internet, so I could have more syndromes. This doctor knowing my sisters history, that she has a sacral nerve stimulator so that she can use her bladder, agreed with me. He told me because not many doctors had heard of Fowler’s Syndrome this was perhaps why I had encountered such hostility. The Fowler’s syndrome would cause the acute urinary retention and the problems I have had when in hospital or at home when they have fitted a catheter and my bladder has still refused to empty due to the fact the valve at the neck of the bladder had clamped around the catheter. Again he couldn’t understand why I had been taught to self catheterise and hadn’t had the bladder issues fully investigated. I explained to him that when I raise this issue with my doctors I get told I have already had lots of tests done. It is infuriating because the doctors seem to blame me for the wrong tests being done, so now nothing gets investigated and it is only the symptoms that get treated.

I have just looked back at the amount of stuff I have written after claiming I wouldn’t write much. I don’t know how I am putting this together as I am so tired I can barely string a sentence together let alone see the screen.

Anyway back to the Midodrine, once I can tolerate this medication at the full dose of 5mg three times a day, the doctor wants me to then slowly add in Ivabradine. I have tried this drug before and it was wonderful at stopping the tachycardia but my blood pressure dropped very low. This is what my new doctor has picked up on, where as the old consultant was happy to just say “you obviously need a fast heart rate to keep your blood pressure elevated”. This doctor wants to get to the bottom of this and raise my blood pressure and then drop my heart rate. It was actually something (on my extended list) that I wanted to suggest. I have to say I was  in shock when it appeared both the doctor and I were on the same page. That has never happened.

I can’t really remember much more from the appointment and I will be honest I am starting to fade a bit here. He wants to see my print outs from my tilt table tests to see what my blood pressure and heart rate did. My old consultant handily forgot to include them in my notes. My new consultant ordered a load of blood tests, one for my testosterone levels (due to my facial hair), a repeat of the prolactin to see what that is doing and countless others, I was robbed of 4 vials worth of my blood. 

The assistant that took my blood wasn’t great, she had a constant sniff (that always makes me feel sick and is a pet hate of mine), she managed to jab the first attempt straight into a nerve and then had the gall to shout at me when I moved. She tried to tell me she hadn’t hurt me, I asked her “why would I shout out and jump if you hadn’t hurt me?” I was furious. I have never moved during a blood test, I have had 100’s of them, I have had 3 doctors jabbing me in the feet and both arms at once to get blood. So I don’t jump about when people are trying to get blood from me. My point was proved when she then got a vein on the back of my hand and I continued chatting with her whilst she got my blood. It didn’t help that I was tired and dehydrated when she was getting my blood but to try to tell me she hadn’t done anything to make me jump was ludicrous. My husband was getting quite tense at this point as he has seen me having blood taken on many occasions and has never seen me react like that.

Despite the horrible blood taking episode I would describe myself as slightly elated after that appointment. This doctor wants regular email updates on how I am doing……I know what doctor does that? My last doctor gave you ten minutes of his time and you didn’t see him again for 6 months if you were lucky and they remembered to book you an appointment. I had this doctor for 80 minutes.

My husband informed me last night as we were going to bed, I didn’t let the poor man finish a sentence without interrupting him. He said I was gabbling away like a loon, like I always do when I am nervous. Hubby is happy, he said he feels for the first time in a very long time that we are starting to get somewhere. As I told the doctor yesterday, I know that there is no magic wand, I know that there is no cure, I would just like to feel better and be taken seriously.


I’ve been gone a while

I am sorry that again I’ve been gone a while, well actually over a year. Sometimes I couldn’t face typing out what’s been happening in my life as the act of typing it out would some how make it more real.

 Other times the blog has left me feeling exposed. On facebook on the whole I can choose who I share the information of my life with and delete and block those who are unsupportive, fake or just rude. With my blog my soul is bare to the world.

I’ve decided I need to continue with my blog and now have it set up on my tablet so I can update it whenever and where ever I like.

My story and others like mine need to be heard even if it is just by a select few, maybe no one? At least if I co tinue writing I can’t be accused of not putting the information out there.

In the last year or so my health has declined rapidly. On February 7th 2014 I had another tilt table test but this time with glucose loading and its sent my health into a nose dive. This tilt table test revealed more than Pots ( postural orthostatic tachycardia syndrome) it also revealed Orthostatic Intolerance ( my blood pressure drops on standing), an arrhythmia ( my heart never stays in a rhythm but likes to disco dance its way through the day), post prandial hypotension ( my blood pressure drops after I eat and I black out) and at the end of the of the test my consultant told me I have severe autonomic dysfunction – that was never said during the 2011 tilt.

I have been booked in for a drug trial in April this year. The drug is called ocetreocide and its the last chance saloon for me. The ocetreocide will be injected three times a day before I eat in the hope that it stops / reduces spleenic blood pooling ( too much blood being diverted to my belly after eating). It can have some nasty side effects but if tolerated by me it could make a difference. On the second day of testing  if I’ve tolerated it then I will be taught how to inject the drug myself.

I’ve tried all the usual drugs Fludrcortisone ( triggered migraines, Ivabradine dropped my blood pressure too low and midodrine stopped me being able to urinate properly and also gave me really awful stomach pains. I’m still on my salt tablets and they’ve been increased to the maximum dose after my nose dive this month. Eight of those beauties a day!

I’m also back on the fludrcortisone so far so good. Its made a small improvement as I can now get out of bed for a few hours every day. For over a week I was bed bound and hubby had to take time off to look after me. So its been a definite improvement. The side effects so far have been fat ankles, fat hands and puffy eye lids but I can put up with them if I’m not stuck in bed all day!

Last year I had a few investigations performed as my eye sight was awful continual ptosis ( right eye shut constantly) nystagmus ( rapid uncontrolled eye movements) it was a great deal of fun. I had to be seen by a neuro opthalmologist one of the rudest doctors I’ve ever met. Who treated me like all I was after was a myasthenia gravis diagnosis. To be honest I’ve gone past caring if they diagnose it or not. I’m sick of the whole MG thing and the neurology department!

I also had investigations done for my bowel adhesions as my stomach pain increased and made eating impossible as it was so painful. I ended up on liquids only and lost 2 1/2 stone in weight ( 35lbs). It was needed as I wasn’t svelte and I’ve pretty much managed to keep the weight off. Getting down to a UK size 16 for the first time in years! See every cloud and all that!

So that’s a quick summary of where I am at the moment although I forgot to add I’m also having breathing problems so I’m using my oxygen concentrator most days.

Again sorry that I abandoned this blog.

Update after Consultant Visit

I visited my POTS consultant this week. Unfortunately I got myself in a complete state before I went which meant I was dry heaving, snappy as hell and a little uncommunicative! At least my husband / family and friends all know that this is how I act when I am nervous / stressed out and know that as soon as the visit is over I will be back to my normal charming self!

We were actually seen 20 minutes early (due to nerves we actually arrived at the hospital at 10.08am the appointment wasn’t until 11am!) so that was good as my consultant can run a little late – purely because he likes to spend time with his patients and address the concerns that they may have. As usual my husband and I were the youngest people in the waiting room by about 30-40 years. I am seen in the geriatric clinic! Although my consultant is geriatrics and general medicine. Its always quite amusing as the other patients cant work out why these young whipper snappers are attending their clinic!

I confessed that I was no longer taking midodrine – the side effects were just not worth it. I did have massive improvements on the drug – no more ptosis, mental functioning better able to be out of bed for longer. The down side was severe stomach pains and being unable to urinate. The pain from both of these side effects would land me back in bed…. so I admitted defeat. My consultant said it was a shame but that’s the way it goes sometimes. So I have now been started on Ivabradine a medication that is used for congestive heart failure and used off label to treat inappropriate sinus tachycardia and postural orthostatic tachycardia.( some drs are saying that POTS and IST are actually the same thing) Unfortunately one of the side effects can be lowered blood pressure, which as my regular readers will know a lowered bp is something I do not need. So I have started on 2.5mg twice a day.

Ive already noticed that my heart isn’t pounding out of my chest when standing. Ive checked my pulse and its still running fast over 100 bpm but not going above 120bpm. My pulse needs to reach over about 110bpm before I notice it. It sounds strange but I guess my body is so used to it running fast I no longer notice it. It does feel really strange to stand and not have my heart pounding! The downside is I am light headed, there has been no massive drop in blood pressure and with the heat we are experiencing at the moment its difficult to tell if its the heat or the medication causing this, time will tell. My consultant is keeping a close eye on me as he feels I may need my pulse to run that high to counteract the low blood pressure, so we need to proceed with caution.

My consultant checked my heart as I have been experiencing a lot of chest pain on exertion. He didn’t detect anything and those of you with POTS will know that chest pain is quite common. So I am not immediately concerned about it.

The good news is that my consultant is trying to start an EDS clinic for the southwest as most EDS patients find they will see a rhuematologist to get diagnosed and then be discharged from their care within 12 months. Basically EDS patients are falling through the cracks with no service looking after them. My consultant is trying to team up with a geneticist who is keen to identify the gene behind EDS 3 or HEDS as it is known.

That would be fantastic if they could get this clinic started as my consultant told me there is no NHS physio therapist in the southwest trained in EDS patient care. Which means unfortunately most of us seeing a physio will come away with more problems than when we initially started with them. My physio claimed to understand EDS but had limited knowledge of POTS which is where the problems started and ended up with me packing physio in. This cant be right and we need better understanding across all fields of medicine.

Ive been resting up since my visit, I also managed to have another migraine on Monday. They are just wiping me out. So its been a pretty exhausting week.

Thanks for reading.

Arrghh Heat!

Well those of you in the UK will know that we are experiencing a heatwave at the moment. To my friends over seas you will be laughing your heads off that temperatures of 25 degrees Centigrade are considered a heat wave when you have to put up with temperatures much higher!

Those of your with POTS or dysautonomia will know heat is the absolute enemy of our condition! One day of the heat was fine but this has been going on since Monday, its now Friday and I have seriously had enough! I’m not only having to cope with swollen feet but my skin has become incredibly light sensitive and I’m burning in a matter of minutes. I’m having to wear factor 50 sun block and I am still burning!

The first few days were OK for me although some of my POTSY friends were already struggling. I actually felt quite smug that I was coping so well in the heat and then yesterday it hit me like a hammer. Every time I stood up I felt like the world had turned into a merry-go-round and it didn’t stop until I was seated again. Even indoors there was no escape. Today its around 1120am and I feel sick with the heat and I am spinning! I checked my temperature and its running a little hot for me. As usual my crazy autonomic nervous system isn’t working and giving my body all the wrong signals.

I have taken midodrine today (after another break because of bladder issues) in the hope it will provide me with some relief. It hasn’t so far but every time there is a small breeze I’m covered in goose bumps! My toe nails are blue despite the rest of my body feeling like its going to melt. What fun!

We have had a bit of a stressful week here my mother in law has just been diagnosed with cancer and we are waiting to find out what stage it is at. Hubs is very up and down as its the second time his mother has been diagnosed with a cancer. The last time was over 25 years ago and she sailed through. This time however its different. This type of cancer has no cure, isn’t treated aggressively in older people and will eventually lead to the inevitable. It was found totally by accident and the consultant believes its been caught very early. My mother in law is very sad obviously about the diagnosis there have been more than a few tears. Its going to be tough all I can do is be there for my husband and try and support him.

It makes the challenges I face in my life quite insignificant, here I am moaning about a little heat when she is facing this.

I don’t want this post to be all doom and gloom so I will let you know I have been out in the garden and managing to potter around a bit. We have been preparing the pots ready to get some bedding plants in. We are really behind this year as the weather has been very cold, last week the temperature barely got above 12 degrees centigrade. The temperature has been really dropping at night and would have killed off anything we planted so we have been putting it off for as long as possible. I am getting quite excited now about getting some plants in and adding a splash of colour to the back garden!

A solitary strawberry plant has survived so when it bears fruit Mollie will be able to steal them! Shes obsessed with the pink broom (plant not a sweeping implement!) and spends each morning sniffing it before she finds the perfect spot to sunbathe! The other two dogs only go outside when I am out there, they have never been into sunbathing!

I hope everyone has a lovely weekend what ever they are doing.

Thank you

I just wanted to do a quick post before I head back to bed to say Thank You, to those of you who have left comments or who have contacted me to say that they enjoyed my last blog post. It means the world to me that you enjoyed it and understood the place that I was coming from.

I thought I would also take this opportunity to update you on my recent hospital visit which took place last week. The appointment went very well I saw my consultants registrar although my consultant did pop his head around the door and say hello.

The results of the appointment are that I now have the registrars e-mail address and I am to forward to her any info / Medical papers / videos that I come across on the various forums that I lurk on. I think the registrar may come to regret this as my last email contained close to 14 medical journal articles! Due to a lot of the forums I belong to being mainly American a lot of the research comes via the Vandy, Mayo and Dr Grubb. Some stuff I am sure that she may have seen others I dont know. Hopefully they will be of use to her and my consultant as they are hoping to start some research. I know its along genetic lines as yet again I was asked in the future would it be ok if they took my blood to have a look at it. I asked them would they have the vascular access team on hand as my veins are notorious for refusing to give up the red stuff. My consultant and registrar both said “oh no your one of those!” meaning its not uncommon for my feet to be used as the puncture site!

I have to continue with the midodrine for the time being to see if we can get to a dose that I can tolerate and doesn’t irritate my bladder. The next appointment is in August and if the midodrine is still not playing ball with my bladder its time to move onto the next medication. I am happy to continue but I already know it doesn’t matter what dose I am on my bladder really doesn’t like the stuff, it reacts on 2.5mg, 5mg, 7.5mg and 10mg – I don’t think there is an optimal dose. But as they said I have a good head on my shoulders and they know I will play the game until August…. unless I have any nasty urinary tract infections and then I will say no.

I asked about taking a small dose of beta blocker at night to see if that helps me sleep better. I had come across some research that showed POTS patients also have symptoms whilst we sleep and due to that we don’t get any useful, restful sleep. We are constantly running on an empty battery, if you add the pain of EDS into the mix its no wonder we feel like extras on the TV series The Walking Dead! I can sleep 12 hours and wake up feeling like I never slept at all!

They are thinking about it and then getting back to me. So fingers crossed.

I also came across this brilliant blog it shows you some of the bendy crazy stuff that we EDSers can do. It also explains why we are so clumsy all the time. Our brains basically dont have a very good idea about the space our body takes up, hence the permanent bruises on my knees from walking into my bed, the very same bed that has been in that position since 2004! Why all the door frames in this house gang up on me. I have to consciously think about where things are in relation to me all the time. The onetime I don’t do it I walk into things! So thank you to the author of this blog.

Thanks for reading!

I’m heading for a crash….

In January I had a good few weeks and managed to get lots of jobs done that had been bugging me for weeks. I actually felt the best I had in a long time. However things have slowly been changing. I noticed I have been becoming more tired, sleeping 11-12 hours a night, having very bad spinal pain and a feeling of just not being right. Nothing I could really put my finger on. Just the feeling something wasn’t right.

I am constantly dehydrated no matter how much I drink and I drink a lot (4-6lts). I know when I am dehydrated as my fingers crinkle like I have been in the bath for an hour. When there is enough fluid on board my hands are normal. People ask me how can I drink that amount of fluid in 24 hours – its really bloody easy I’m constantly thirsty. The problem is I’m just not hanging onto this fluid despite the salt tablets.

The good news is that now I am off the amiltyptiline my bladder doesn’t seem to be as badly affected by midodrine. The bad news is that currently the midodrine isn’t doing anything. My highest blood pressure reading this week has been 102/53 not exactly the results the Dr’s and I were hoping for. The blood pooling in my legs is worse than ever.

I’m also getting a whole host of new symptoms such as really awful headaches around an hour after I have eaten. A sudden feeling of a really swimmy head when sitting down which takes a while to settle. Also my legs are buckling underneath me when I am standing. I nearly ended up wearing the kitchen worktop on my chin earlier today. None of these symptoms come with any warning they just happen. Its beginning to frighten me.

This slow decline has me worried I am managing to hide my fears from my husband – he really doesn’t need the added stress. Mother knows because during two phone calls this week I have sounded drunk because I have felt so awful I could barely string two words together. Unfortunately one of the phone calls was at 7pm and hubs wouldn’t be home until after 10pm. I couldn’t move from the chair I was in and I just had to hope I didn’t pass out. Hubs did ring me around 20mins after my mum had and on hearing how bad I was asked if I wanted him home. I said no, what could he do? What could anybody do? POTS is such a rare condition if I went to hospital I would be put in an observation ward and left until morning. Leaving me open to hospital based infections and taking up a bed for someone they could actually fix.

I know this post sounds depressing, I promise you I couldn’t be further from depressed if I tried. I am concerned how bad is it going to get? As I really don’t want to be admitted to hospital.

So If I am MIA for a while you will know why, I am hoping it doesn’t come to that. However the signs aren’t good. Even my early warning system Frankie is concerned…….never a good sign!

Thanks for reading xx