Dysautonomia Awareness Month!

Dysautonomia Awareness Month!

This October I’m supporting Dysautonomia Awareness month. Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. Like many people I hadn’t heard anything about Dysautonomia until I was diagnosed with a form of it known as Postural Tachycardia Syndrome (PoTS); an abnormality of the functioning of the autonomic (involuntary) nervous system.

Normally when you sit or stand up, some of your blood drops under gravity to your belly area, hands and feet. Your blood vessels quickly narrow and your heart rate increases img_0782slightly to maintain blood flow to the heart and brain, preventing blood pressure dropping. This is all done without needing to think about it by the autonomic nervous system – the nervous system in charge of automatic body functions such as this. Unfortunately In PoTS, for some reason, the autonomic nervous system doesn’t function properly. There’s a drop in blood supply to the heart and brain when a person becomes upright and in an attempt to compensate for this, the heart races and the body produces the hormone noradrenaline. This causes many symptoms such as dizziness, fainting, blurred/tunnel vision, nausea and headaches to name but a few.

Little is known about why this happens but many cases are believed to be linked with Ehlers Danlos Syndrome (EDS) where there is a fault with the Connective tissues which provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. Medication and lifestyle changes can help with this syndrome and some can come out the other side; however a number of people suffering with this disorder continue to struggle throughout their lives with many not being able to work or take care of themselves effectively due to the symptoms of this faulty autonomic system.

I can honestly say that this has changed my life and I wanted to raise awareness of this relatively unknown disorder.

If you’d like to find out more please visit:

Dysautonomia International:http://www.dysautonomiainternational.org/page.php?ID=34

PoTS UK: http://www.potsuk.org/

Ehlers Danlos Support UK: http://www.ehlers-danlos.org/

Exercise with PoTS

Exercise with PoTS

Hi all,

Wanted to write a blog about exercise as I think it is key to feel better with PoTS and Hypermobility Syndrome. The annoying thing is though that with these two things you can feel so drained and tired all the time that you just can’t exercise! With me I work full time in an office and the last thing I want to do is tire myself out before work the next day as being off work is something I hate doing so I try to rest when I get back home. This unfortunately means that I don’t really get much exercise as I tend to be sitting at my desk (even though I’m constantly pumping my legs) which I believe makes my PoTS, Hypermobility and stomach troubles even worse.

Therefore I have been really trying to do a bit more exerciseIMG_3730! When I walk I always make sure I’m squeezing my bum and legs and stomach which I do think has helped and I’m attempting to Pilates when at home. Also, I’ve got a dance studio in my village and had a chat with the owner there about my issues and she was so lovely and helpful and suggested that Ballet and Pilates may help as they both focus on strength and posture. With Ballet it is mostly leg work and you’re constantly pumping the blood and building up the muscles in your legs, bum and stomach so she said it might be worth popping to the beginners class that evening! It was hard… The other girls in the class had been doing it since around April so they were definitely better than me – I was literally all over the place! It was interesting to see how purple/red my feet and hands went whilst doing it compared to the others… Also my body was just so weak, like floppy… I read an interesting report on ‘Teaching the Hypermobile Ballet Dancer’ and it literally was like I was reading about  myself – so uncoordinated haha. I felt like a rag doll. Oh well, hopefully it will get better as the weeks go on… I am feeling in rather a lot of pain today and my knee has taken a battering due to the turnouts but as my strength grows hopefully this will happen less and less.IMG_3700

I’m also hopefully going to start Pilates weekly soon with the owner of the studio and she wants to help me gain as much strength as possible to improve my condition which is so nice to hear! she was absolutely lovely and it makes you really appreciate people in the world that actually care and want to help :). Also, I found this amusing, this is a picture of my heart rates on my FitBit – the bottom one is me walking casually to my bus and the top one is me doing Pilates at home (the blue is when I was doing matwork and it goes into yellow when I stand up to *try* and do some squats and then put the mat away. It’s so weird seeing it like that! Just wanted to share the oddness of PoTS. I can’t quite believe how my heart rate is higher when I’m just casually walking than if I’m actively exercising. Makes me realise how much of an effect this disorder actually has on my body… Poor wee heart!

NHNN – The results are in!

NHNN – The results are in!


So, update time for my NHNN results – I have PoTS for sure! That’s the quick version, now for the long story-telling blog version…

So I went to the NHNN on Wednesday and am very fortunate that I live just near Birmingham New Street Station as my tickets were under £15 for a return! The train on the way there was a lengthy 2hr15mins though which was a tad dull but the train back was only 1hr25mins which is easy peasy. Also, I got to see the refurbished New Street Station which is absolutely gorgeous! They now have amazing food places like Leon (a definite must-visit for anyone who hasn’t been).

On arrival at Euston I walked the 15 minute journey to the NHNN which, to be honest, killed me a little bit, my heart rate was soaring but I’d rather do that instead of getting the tube, the tube scares me and I feel even worse if I’m moving slowly or in an enclosed space (I think it’s because there are less options to sit down safely/breathe so my body feels a bit more under threat when my heart rate is up). I then checked in and got called through by a lovely nurse who did my sitting and standing BP and HR (sitting – 93bpm, standing – 130bpm) and my BP was pretty much normal/low as usual. I then went to sit back down for less than a minute and got called through by Dr Ingles to discuss my results. He was absolutely lovely and basically said that my testing was really clear cut and that I definitely have PoTS and this is not due to any psychological factors (which was nice to hear). Also I have a tendancy to a vasovagal reflex which is basically fainting.Therefore after a while of a really high heart rate/PoTS episode sometimes my body will just switch to fainting to try and help my blood get around, this can also happen when just in a warm room/when digesting which explains why sometimes I randomly feel like my body is shutting down – because it kind of is! Dr Ingles explained it really well, as in a hospital when the power goes out the non important power turns off but the ICU areas are not effected, which is basically what happens in your body when you start to faint/get low blood pressure. Luckily this doesn’t happen very often with me but I do have that tendency so I have to take care when I get the symptoms.

Apparently my blood pressure is slightly low and so I could consider trying Midodrine again or he said Florinef might be better as I had some adverse reactions to Midodrine. Also, he did comment on my SSRI (citalopram) as it does lower blood pressure but he also said that if it helps with dealing with having PoTS it will be doing more good than harm and it’s something to discuss with my GP… To be honest I do feel that it is helping me at the moment as it does make me care about things a little less, it’s like a tiny fluffy buffer for my emotions – which is useful with any chronic illness. He then went through my results and said that it was noted that my feet turned dusky because of the venus blood pooling (ew)

and my BP was normal range but then started to go very low towards the 12 minute mark when the had to tilt me down otherwise I would have fainted… He then said you basically have clear vasovagal activation, clear blood pooling and clear PoTS! Then he went on to talk about the meal testing and found that after a meal my heart rate does increase more than on an empty stomach so this explains why I feel worse afterwards as the blood seems to be pooling there also – fun times! He also commented on my catecholamine levels and said that in the UK they don’t seem to do as much with these readings and that mine are within the normal levels and with PoTS there will almost always be a rise in these levels as when your heart beats so fast your body does go into a state of flight or fight which is why many times it can be misdiagnosed as a panic disorder because they do not see the physical side first, just the emotional feelings that come with it.

After this he then went on to say that he believes I have EDS (hypermobility syndrome) which is causing many of these problems and that he is going to send me to their Rheumatologist to help with the diagnosis and management. He mentioned that some people with EDS might not even have that bendy joints and it is actually more inside their body than on the outside, but, as I have PoTS and scored 9/9 on the beighton test it is highly likely that I do have EDS III. After this I asked him about informing the DVLA about my PoTS and he said it probably would be best practice to inform them just in case you ever have an accident to cover your claims/insurance.

So, I’m basically going to try the management group that is held at the NHNN next and see where that takes me, after this I may go on to meds such as Florinef and try and range of things until I get some relief/am able to shop again! If anything changes/doesn’t get better than they’ll probably repeat the testing and look at some other complimentary measures such as CBT or acupuncture etc… Apologies for all this information, I recorded our session so that I could remember everything, I literally have the memory of a goldfish.

Hope everyone is well 🙂 Any questions/comments feel free! x

The Interim.

The Interim.

Only a week now until I get some answers from my tests at the NHNN and I literally cannot wait, it’s really playing on my mind whether I gave them enough information or what my tests results were. I am scared that they might say “don’t be silly, you are fine, there’s nothing wrong with any of your results” – AHHHHH! I know most people should hope for an answer like that but when you’re feeling like I do everyday, having an answer and something to focus on is like a saving grace – albeit a rather odd one!

I’ve been getting on OK the last few weeks though, obviously my symptoms are here everyday but at least I can function which is nice 🙂 2I had my birthday last week and two of my best friends came down from London and we went to the Moseley Folk Festival in my village – it was lovely! The hardest part was standing and queuing to get our faces painted but I kept kneeling on the floor or sat in a chair that was free whilst we waited.
One thing that was a bit odd though was that this was pretty much the first time I’d had a birthday or been to an event with friends that I hadn’t been drinking at… I had one glass of prosecco with them to toast my birthday but held off after that as I knew the hangovers and week long effects of it are just not worth it! I had a great time though but I do miss drinking and also being able to have the energy that drinking gave me. I also really miss being able to dance 😦 hopefully one day I can bust some proper moves on the dance floor once again.

Another thing I’ve been trying is the low-histamine diet, this has been very hard as I’ve had so many outings which has prevented me being able to cook and also I didn’t really understand fully what I could eat and what should be avoided, I’ve now found a great resource and am using that to help me manage my diet. 3I’m not excluding everything that has histamine in, just trying to reduce it and focus on things that lower histamine or have none in! I can tell a difference in my skin as I haven’t been itchy when avoiding the high histamine things and also my lips aren’t swelling up that I can tell! However I am still getting headaches so I’m unsure if this is due to histamine, PoTS or because I started back on the pill a few months ago and my body is not really enjoying it… I’ll probably ask next week what the specialists think as I’m sure they’ll have more of an insight into these things than my GP. I’m really not keen on stopping the pill though as it has evened out my moods and made my body look nicer! If it turns out they think it is causing headaches though then I will stop as it’s not wise to continue if there’s a higher risk of a stroke – horrific.So, back on to the histamine diet, I’ve been making some ‘tasty’ green smoothies and also cooking some healthier, more vegetarian options for dinner and lunch. 4Jamie Olivers gf quiche pastry recipe is now like my best friend! It’s so easy to do and I use ricotta, eggs and natural yogurt to bulk out any fillings I put in there. This one is beetroot, red onions, walnuts (bad histamine oops) and rocket – very pink and tasty! Tonight I’m planning on making one with courgette, onions, nutmeg and basil. The best thing about them is they’re so easy to pack for lunch and I can have one slice for brunch and one for lunch then just snack on an apple later on (or a tiny bit of milk chocolate as that has lowest histamine – thank god…). Also, just a note to say that I’m trying to reduce my sugar intake also as I’m pretty sure I’ve got a candida infection again so I’m taking probiotics and some anti-candida herbs to try and reduce this. I hate candida, my tongue is literally white – it’s disgusting! I had it last year around this time but it was due to copious amount of antibiotics that I was given as they didn’t know why I was having so many weird symptoms (it was PoTS stuff I think). They gave me loads of anti-fungals back then but I don’t really want to take any more of those this year so trying to do it naturally…

Lastly, I want to introduce you to my new little baby – Tiny Dinosaur (or Peanut).1 She/he (not sure yet) is a Crested Gecko and she is the cutest thing ever! She’s about the size of my middle finger including tail and eats powdered fruit mixed with water to form a paste. The only thing I really have to do is spray her house with water in the morning and evening to make sure it stays humid for her and also I occasionally feed her a cricket as a treat :). I think having a pet is really important when you have a chronic illness as it helps you to feel responsible for another life and care about something that relies on you. I’d love to get a dog but we just don’t have the room, a garden or own our own house! As soon as we buy a house with a garden then I’ll be getting a dog. Thinking I’ll either get one from Birmingham Dogs home or from Underdogs, which rescue dogs from aboard and they are gorgeous!

I’ll write again probably once I’m back from my meeting about my NHNN results – eek!

A Forgetful Weekend

A Forgetful Weekend

So… this weekend was horrid…

Friday night was spent in my house just chilling and watching Pretty Little Liars as I had to cancel going out for a curry with my boyfriend and his friends as my stomach was playing up a treat and I had a headache (no surprise there!). Saturday day was spent getting ready (slowly) for a wedding that evening which was lovely butFullSize I was pretty nervous as I didn’t’ know anyone except my boyfriend so I accidentally drank a glass of champers and about 3/4 glasses of wine – annoyingly this didn’t even really get me drunk at all as I was drinking water in between so I’ve decided that it really is not worth me drinking.. especially since I was drinking white wine – blergh. This obviously went against all PoTS advice and my low histamine diet but I thought as its the bank holiday weekend I had two days to recover.

Recovery was very much needed! On the Sunday I felt horrid, proper hungover and didn’t even get changed/leave the house. I also had to cancel my driving lesson as I was not safe to drive – annoying as I still had to pay! Then Monday I assumed I’d be better and I felt OK in the morning but by the afternoon I was a wreck! I had to go to my boyfriends office for two hours with him whilst he inducted someone into the company and then we went to John Lewis to buy laptops for his business before we went home – I nearly died I swear! My body temperature was everywhere, either boiling or freezing cold, I was weak, shaky, couldn’t concentrate, very dizzy, brain fogged, potsie beyond belief and I almost fainted whilst walking so we had to stop so I could sit on a very nicely positioned (expensive) bean bag in the shop. Eugh. Luckily there were sofas and water at the collection point in John Lewis so I chilled out there whilst he waited for his items. Then we went home – thank goodness! I spent the rest of the evening on the sofa and went to bed at 21:30 in the hope it might help the way I feel today as I had work.

Thankfully I do feel better today, still dizzy and a bit more potsie than usual but it’s fine and I have managed to get all my work done – phew! My ability to work means so much to me! However I have now decided that it is really not worth it at all drinking! The only plus I got was being able to stay awake longer and stand up longer on the dance floor (1 full songs worth – I’m such a party animal…).

*Histamine diet update* I have ordered all the foods I can to help me do my diet and am going to have leftovers as lunches because there are no good lunches out there that are histamine free! That I can find anyway…

Furthermore, after eating my lunch today (beetroot and goats cheese salad thing from M&S) I noticed that my lips swelled up and also now I can feel that my throat is itchy – I’ve always had these reactions but I’ve just got on with life and never really thought anything of it because they eventually go away. It’s only now that I’m monitoring them that I’ve realised that they happen after food! This lunch wasn’t the best either as it had spinach, aubergine and lentils among other things… I couldn’t find another option! Hence why I am now bringing my own lunches to work from now on.

Dawn of a new diet…

Dawn of a new diet…

Just wanted to make a quick post today to say that I’m going to start a Low-Histamine diet with aspects of GF and FODMAP parts in it! This is due to feeling very tired of the past few weeks and getting an increasing number of headaches and bowel issues which are very frustrating! 

I thought about starting this before but wanted to make sure all my test had accurate bloods and symptoms! I’m also making sure I take my vitamins – these are B-12 (as I get deficient but no idea why), high strain Probiotics, D3 with Magnesium and Calcium and also an all-round B vitamin tablet so that the B-12’s can work their best 🙂 I used to take these but have been slacking lately and my diet has really gone downhill so I think that may be why I’m experiencing these symptoms. Furthermore, I’m making sure I exercise at least 3 times a week (Pilates) and am removing all chocolate and pre-made treats (AHHHHH) but I will have some fruits so that I don’t go crazy 😛

This website explains about Histamine intolerance well: Allergy UK – Histamine Intolerance

I always seem to get random hives that appear and at the moment by body keep feeling really itchy and also I’m very congested and puffed up with watery eyes etc… I feel that this might be a different thing from my PoTS… Or at least I’m going to treat it differently to see whether it makes a difference to both! To be honest I guess I wont know what is the true cause but I know I am very sensitive to foods and have had my tongue blow up on more than one occasion randomly so I think it’s worth a try if I can feel more alert and less itchy!

Does anyone have any experience with this diet? Or anything similar? x

NHNN Autonomic Testing

NHNN Autonomic Testing

Hi all,

It’s been a rather long time since I posted last but I’ve been trying to concentrate on managing my PoTS and also my work/home life.

I would say that I feel more in control of my syndrome now than I did when I was writing before. I still have my down days but luckily they are few and far between! One of my most recent down days was on returning from London following my 3 days of autonomic testing, I think I was just completely worn out and had built up these days in my head thinking I would get some more answers, when in truth I knew that the answers would take a while to come as everything has to be analysed! It was my own fault and I was concentrating on the things I couldn’t do rather than those that I can do. Lesson learnt!

Anyway, I’d like to give an overview of my experience of the NHNN testing as I was very nervous beforehand and tried to find out as much information as I could and found other peoples reviews really helpful 🙂

Tuesday PM

After work my boyfriend and I caught the train from New Street to London Euston and walked 10 minutes to our Hotel (Holiday Inn, Bloomsbury) which the Autonomic unit had booked the previous week for us. When we arrived we checked in and everything was already paid for, including breakfast (which my boyfriend loved, unfortunately I was only allowed to eat on the Wednesday morning). That evening we just stayed in the hotel as it was late and I had to be at the NHNN day care unit at 8:30am.



After waking I got ready quickly and we walked the 5 minute walk to the NHNN. They also offer a transport service at either 7am or 8am for those that are not able to manage the walk but I felt ok with this 5 minute walk and did want to see what was around the area – also I had my boyfriend with me so always feel safer!

On arrival at the day care unit I had some preliminary tests done such as weight, height, BP and HR then sat in their day care unit room with comfy chairs. These rooms are for patients to use at their will and you even get a free meal voucher or lunch if you’re staying the whole day! All the staff were amazing, albeit a little hard to understand at times as they were many different nationalities – but that’s London for you, the most important thing was how caring they were.

When it was time for me to go to the Autonomic testing unit I was taken by the porter through the hospital as it was a bit of a maze – if you feel you can’t walk they have wheelchairs available but the walk isn’t too far and they always use lifts rather than stairs. PotsOn arrival I sat for a few minutes and was then called in to one of the rooms. The nurse fitting my 24 BP monitor was lovely and friendly and he showed me exactly what to do and how to record my readings on the document that I was given. The BP monitor is easy as pie and takes automatic readings every 20 minutes until 11pm then every hour after that until 8am when it goes back to every 20 minutes. It is a bit annoying and 20 minutes really does go by fast! Also, there are a lot of task that you need to do whilst wearing it and for these it explains everything on the document given but you need to manually press the monitor for it to take readings as and when. When automatic readings are taken you need to make a note of the time also on the document and any symptoms – this enables them to get an overall picture of your day and how your body reacts to doing different things. The monitor was annoying during the night but it wasn’t too bad, it was great to get it off the next day though! I put mine under my top so that you couldn’t really see it either and meant that I didn’t look odd when out and about in London. However, you do see people with these on in the area and it really doesn’t matter!


Pots4This was by far the hardest day. I wasn’t able to eat any breakfast and was tired from the BP monitor the night before. I arrived at the day care unit at 08:30am and was taken down once again by a porter to the autonomic unit where I was called into a room shortly after arriving and my BP monitor was taken off me along with the documents. The nurse was an absolute star and she explained everything and also asked me a few more questions that they felt they needed answers to following my previous consultation with the Dr (a month before these tests). After this I led on the tilt table bed and was strapped up to the BP machine around my arm, had the little monitors on my chest (so glad I wore a bra!) and had another cool BP and HR monitor on my wrist and finger. Let the tests begin (in no particular order as I can’t actually remember):

Hyperventilation test

This test consisted of me breathing very fast in and out for a period of time and was absolutely fine.

Deep breathing test

Breathing in and out slowly and deeply for an amount of time – also easy and very calming 🙂

Blowing test

Breathing in to a tube and keeping it at a certain amount for a certain time, this was difficult but was fine for me. Had to repeat this 3 times.

Squeezing tests

Firstly it was just squeezing to how hard you can on this blown up glove thing, then I had to squeeze and hold at a point for a certain amount of time. The holding was tiring but again, fine.

Maths test

Horrific! But it was fine, it’s just that I hate maths… It doesn’t matter if you get them wrong, it’s just to measure how your body reacts to mental stressors I believe. I was terrible so don’t worry – they like to spring this one on you so you’re not thinking/worrying about it. The are no scores recorded at all.

Cold pressor test

This was probably the most uncomfortable test I guess as they put two ice cold packs either around your hand or your arm and leave it there for what seems like a long time! This is measuring your bodys reaction to cold and pain, but don’t worry it doesn’t do any harm and it really isn’t that bad! I was actually asked if I went ice skating as apparently my body was fine with having the coldness! I am a very hot person almost all the time though so I think that has something to do with it… Maybe I should live in the North Pole or something as I’m clearly habituated there!

Tilt test and Catecholamine blood test

This is what I was most scared about, I literally hate needles and having my blood taken and it also makes me feel really weak and dizzy so not the best! However the nurse was excellent and explained the cannula to me and that it is much better than getting your blood taken. When it was inserted there was a sharp pain but then this went away and it was all set up, I could even look at it! I was then left to lay down for 15 minutes until my body went back to normal after everything and then my blood was taken through the cannula, which I felt nothing (thank goodness). After this they began the tilt test. Eugh. Eugh. Eugh. I hate tilt tests! I felt nauseous as soon as the tilt began and all my symptoms came. I even cried during as my body is just like going mental and is so uncomfortable. Bless the nurse, she wiped my tears and asked if I wanted to stop – I said no as I wanted to carry on and get all the results (I’m just an emotional person haha). I managed 12 minutes until she decided to bring me down as my BP suddenly dropped and I think there was a high chance of me fainting, which is never fun with a cannula in! She moved me straight down without asking and tilted me a little upside down to get my blood to my head again then she took my blood from the cannula to enable the tests for the catecholamines to be carried out. I was worried that as I was no longer upright, and started to feel better as soon as I was lowered, that my results wouldn’t show anything but she reassured me that the hormones stay in your blood stream for a few minutes so I should be absolutely fine, this is why they have to leave you for 10 minutes as it takes that long for it to change properly – glad I made 12 minutes! Apparently the longest they keep you tilted is 45 minutes.

So that was the end of the testing and I was allowed to sit and chill in the room for a bit and had a quick look at the screen with my readings on it, I could see that it had gone up to around 160bpm and then came down as I was tilted back but the nurse wasn’t able to comment as she needed to look at the readings and analyse them first as she didn’t want to tell me anything that might not be true – makes sense! After this I went for lunch with my boyfriend at this lovely place called Gourmandina which is only a short walk from the hospital – definitely recommend it there, the gluten free lasagne thingy was beautiful! That evening we stayed in the hotel mostly (I napped) and then went to GBK around the corner for some dinner then straight back to sleep as I was knackered.


The last day! This day was for the meal test. I arrived the same as yesterday as was taken to the autonomic unit again where I was called in very fast by another lovely nurse.
She asked a few questions and then I sat on the tilt table once again and she went through what was going to happen. The nurses made sure all through my stay and beforehand that I was ok with milk and this test required drinking two small glasses of milky glucose substance in quick succession! I was attached to all the monitors like yesterday and then left to rest for 10 minutes until I was at a normal state (by the way, my BP is always waaaPots7ayyyy higher in hospitals than out of them, I think many people get this and it’s called ‘White coat syndrome’ – just means that you’re body is a bit more stressed than usual, but with the 24hr BP results the should get an accurate view of my BP and HR on a normalish day).After this I had my first tilt test which was horrid but not as bad as the last two I’ve had – I didn’t cry! Luckily it was only for 10 minutes thank goodness. I was then lowered and left to get back to normal for 10 minutes. After this I was given two glasses of the drink to have through a straw which the nurse held for me, this was difficult as I had to keep laying down but with just my head up – my body and stomach were really confused as to what was happening! The second glass was the hardest and I had to stop occasionally to be able to carry on. Once done I was left with the lights down to literally just lay there for 45 minutes. This was dull but I just moved my legs into a comfier position and shut my eyePots3s (or looked back at the monitor to watch my readings – probably not recommended lol). Once the 45 minutes was up I was then tilted again for 10 minutes which was also not as bad as yesterday but still unpleasant. I don’t think there was too much difference in the two but I did feel worse on the second. I think my problem is mostly with larger/hot meals… Drinks don’t tend to ruin me tooooooo much. I told her this and she noted it down. After all this was done I was allowed to chill out and then the nurse asked if I wanted to take part in a research study they were doing into Psychological aspects of PoTS symptoms so I sat down and filled out the form, the questions were rather personal but I was happy to answer and believe that the more info we can get about PoTS the better and I was happy to see research going into it! I’m going to ask if I can see the published study when it is complete and also offer to help in any other research when I go back for my results. Lastly, I had a chat with a Dr and she answered any questions I had and also asked me about how I was feeling and if there was anything else I’d like to add to their notes that I’d forgotten last time.

So… Overall the experience was emotional and draining but positive. The people at the NHNN were amazing and the equipment they use is fabulous! I felt completely safe and happy throughout my stay there and in the Holiday Inn.

After all my tests my boyfriend had booked us in to a lovely 5* hotel in the centre of London for the night and also took me for a posh meal which was amaaaazing! I was so tired the next day though that we couldn’t really do any sightseeing in London and I was feeling pretty down because of this (the weather was sooooo hot and humid also which made things worse). The next day I checked my fitbit and it showed one of my worst days to date, so that’s why I was feeling so horrific! One tip I would give anyone is to literally just relax afterwards and if you do stay in London, maybe go to a Spa instead of trying to have a posh night out and drinking 2 glasses of red wine – yummy but OMG not fun the next day/two – I was so happy to get home!

So, that’s it! that’s my testing experience 🙂 Please comment with any questions or any of your experiences also. I’ve got my results meeting on the 23rd Sept and I cannot wait! x

The impatient know-it-all

The impatient know-it-all

I’ve learnt some things about myself over the past 10 months dealing with the symptoms of PoTS and they include: being very emotional, obsessive and a massive need to know everything about anything that affects my life! These traits, twinned with finally moving house next week, have become very pronounced over the past week. I literally am SO EXCITED to move house it hurts. I have found out everything and anything about the place we are moving, have looked into as much as I possibly can and even found old photos of it from when it was first bought like 3 years ago. It’s gotten to the obsessive point now that I can’t even sleep properly due to this excitement. I found out that the previous occupants were moving out yesterday so persuaded my boyfriend to drive there so we could go and look in the windows! ARGH, I just want to push a hibernation button until the time when we get the keys… (Tuesday btw). I think I’m so excited as I’ve been living with the boyfriends parents for around 8 or so months and so I’m finally going to get my independence back and time to just *be*.

These traits have also made having PoTS a massive nightmare. I constantly feel the need to explain and know as much

This is actually me doing some Science (before I had to give up my Dietetics course) :(
This is actually me doing some Science (before I had to give up my Dietetics course) 😦

as I can about every aspect and every symptom – which is great as I’m very clued up but on the other hand it’s tiring and when thing don’t go as I thought they would I get really annoyed.

Such as if a flare up just randomly happens and I can’t explain it (this happened yesterday afternoon, I literally ran out of energy and had to lay down for about an hour and a half when I got back from work – breathing was even hard! Does anyone else find it hard that PoTS is a ‘syndrome’?. I think I would feel so much more in control if it was a disease and there was a reason for everything that was happening that was explained by science. But instead it’s just a faulty autonomic system and no-one knows why! I’m hopefully going to the NHNN sometime this year so might get some more information. I really wish I was just studying PoTS rather than living with it as it is interesting but my goodness is it confusing!

A Cloudy Week

A Cloudy Week

I must make my apologies once again as it has been a while since I have posted. The truth is I’ve just been feeling horrid and a bit down so mustering up the energy to post something positive has been unmanageable. I think it’s a combination of coming back from holiday, flare up of pots and being at the end of living with my boyfriends parents!

How I’ve felt for the past 2 weeks – cheery 😛

My boyfriend and I have found a lovely apartment and will be moving out of his parents house in a week or two so I’ve just become completely detached from being at the house currently as I know we’ll be moving out soon. Also, since I’ve had my pots diagnosed I know that I shouldn’t push myself too much and therefore having the freedom of my own house to walk around (mostly lay down actually) in my pants and only do things when I feel the energy is something I cannot wait for! Luckily my boyfriend is pretty understanding so that’s good, but I know it is hard for his parents to understand as they are like uber energetic and do so much every day! It does make me feel bad and also makes me push myself more than I should sometimes. Another thing I can’t wait for is to cook for myself again and start using my Nutribullet! We all eat together at the house at the moment and the food is lovely but I can’t eat as healthily as I want to/used to and I think that has a big effect on my stomach – dairy is pretty much with every meal and that doesn’t always sit well with me!

I am so thankful that we’ve been able to stay there though and they are amazing people but, at the age of 26 having been independent since I was 17, I’m finding the last stretch a very hard one!

In Potsie news, I saw my specialist the week before last and he prescribed my Midodrine to trial. I tried it for 3 days and it didn’t seem to help much but I did feel a bit stronger (I think). The reason why I stopped was that it made me feel quite ‘keyed up’ and also gave me permanent goosebumps on my legs and I developed a rash on one leg which was SOOOOOO itchy! I think it was a combo between Midodrine, goosebumps, shaving and sensitive skin and it hasn’t gone away yet so I’m going to wait until it’s cleared before I try Midodrine again to deduce whether it is that that is causing it or if it was a random occurrence. I’ve also been put on Microgynon birth control pill to see if that helps my BP and symptoms during the time of the month and he is referring me to the Autonomic unit at the National Hospital for Neurology and Neurosurgery in London (NHNN) which I’m quite excited about! I have so many random issues that he thinks they must all be connected somehow – I’m like a puzzle 🙂

I wanted to share this post below with you all also, I think it is an amazing depiction of anxiety:


 Pots Holiday Blues…

 Pots Holiday Blues…

Apologies for not blogging sooner, I’ve been in Marrakech and then recovering from Marrakech!

The Henna Cafe

Firstly, my holiday in Morocco was absolutely amazing! The riad (Riad El Mansour), people, food, sun… Everything! I can’t wait to go back there next year and years after :). The temperature was difficult though as it was around 42 degrees but I managed by using a cooling face spray, drinking lots of water and trying to walk in the cooler shade – thankfully there was a light wind. The first two days I did really well but the last two day I struggled a bit and we had to cancel a plan to see the tombs as I was just too weak, dizzy and tired… This was a good choice though and we just chilled for the last day with a little shopping and cooking! Unfortunately I did eat a load of gorgeously yummy and gluten filled food whilst I was away though and have paid the price since being back 😦

Lamb Tanjia & bread
Chicken & Lamb Tagine

When we got back I had a non stop weekend of doing things and seeing people which, in hindsight, I won’t be doing again! I think holidays just make you feel invincible and then PoTS brings you crashing back to real life with a bang. I also didn’t eat too well at all over the weekend so my IBS flared up and I had the worst stomach on Monday at work (thank goodness the loos are nice and separate!), Tuesday was a bit better but still not 100% then today I thought I was feeling much better… Until after my lunch. About half an hour after finishing my Super Bean Salad and boiled eggs (tastes better than it sounds) I started to feel breathless and unconfortable, I put my legs up and this helped for a few minutes but it just got worse and I started to feel hot, cold, dizzy, weak, shaky, lightheaded and nauseous as well as breathless! I checked my HR and it was normal so I went upstairs to a spare room and led down with my legs up for 10 minutes to try and feel better. This worked but the symptoms came back on standing so I asked my manager if I could leave early to which he said yes thankfully! So I’ve spent the rest of my day lying on my bed. I am confused as to why my heart rate didn’t go up though if I was feeling so terrible? Any ideas or experience with this anyone? Autonomic issues suck! I feel pretty down right now and have no energy either – bad day!

On the bright side I have an appointment with my specialist tomorrow so will update on how that goes 🙂