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 🙂
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. On 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!
This 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):
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 🙂
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.
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.
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 waaaayyyy 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 eyes (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