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Hospital, tests, and in a very bad way without meds!

August 21, 2011

Torture; pain; exhausting; unbearable; upsetting. Five words that don’t even begin to touch on last couple of weeks. Neither the doctors or myself truly realized what I would be like once off of my medication… not good to say the least.

A couple of weeks ago on the Wednesday, I stopped taking the fludrocortisone, and within days of it leaving my body, I suddenly realized how much it was actually helping me. The night sweats returned (its like getting out of the shower dripping and then climbing into bed) these leave me seriously dehydrated. With these the earache and jaw ache also became much more intense, and obviously my BP (blood pressure) dropped even lower, and as a result of that, the head pressure also increased.

Sunday night, my legs started going into convulsion; strangely it didn’t break out into a full blown seizure, so my only guess is that there was still a small amount of fludro left in my body. So instead I sat in the chair, legs shaking away uncontrollably, whilst I watched TV singing “horsey, horsey dont you stop, keep on going….”

Sunday morning I also took my last beta blocker. Monday, throughout the day, I could feel myself getting gradually worse. I grew incredibly fatigued, and out of breath just by moving about the house and it eventually became a struggle to stand any longer than 10mins without feeling massively dizzy.

Tuesday I got up feeling much, much worse. My heart was fast even laying down and the palpitations were incredibly nauseating and intense. Very dizzy upon standing so I took to crawling around the house on my hands and knees.

By lunch time my heart was erratic, and I crawled through to the loo – for some stupid reason unbeknown to myself, I decided to stand to carry out the task and came close to passing out. I immediately laid down on the bathroom floor, before commando crawling back to bed. Then the inevitable happened; after a month of nothing, I broke out into a seizure. The paramedics came out and we explained that going to the QE hospital would be a waste of time as I’m not allowed to take medication etc etc, so they left me be and I multitasked ‘sleep’ with watching a film. The slightest movement, even something as small as a wriggle was enough to send my already fast heart rate racing.

6pm on Tuesday and dinner was ready, so I rolled out of bed onto the floor and commando crawled (I swear this was easier to do when I was 7) and waited at the top of the stairs for 5mins to calm my heart rate down, before sitting up and going down the stairs a step at a time on my bum, clinging onto the banister supports for dear life as I grew fainter and fainter. Dad stood in front of me just incase and I continued down stairs in the quickest slowest way possible (if that makes sense).

Once in the lounge… away we go, seizure number two! This time the paramedics took me to A+E, and the doctor there phoned through to the NHNN (The National Hospital for Neurology and Neurosurgery) and the Neurologist told him to give me a Beta blocker as my symptoms we too severe to leave untreated.

10pm Tuesday evening I took a beta blocker and within an hour and 30mins I went from not being able to sit up, to being able to stand and stumble to the car.

Wednesday morning the Transport ambulance (glorified mini bus with stretcher bed) came from manchester to pick me up at 9am and with the beta blocker still in my system we made it almost all of the way before I broke out into seizure number 3.
Just 5mins away from the NHNN unable to treat or help me all they could do was jump red lights in an attempt to get me to the hospital quicker. They wheeled me up to the ward still fitting, where I was met my multiple nurses who transferred me to a bed and eventually stopped the seizure.

The doctor (one of Prof Mathias team) came and talked me through the following days as well as took extra notes on my symptoms etc. 7pm and I grew hotter and started sweating with intense head pressure. One of the nurses came over to mum and asked if I was going to have a seizure, to which mum replied that she didn’t know. Within 5mins I was rattling the bed yet again for seizure number 4.

They moved my bed to the next bay opposite the nurses station so that they could see me overnight, and 6am the following morning my bed was surrounded once again for seizure number 5.

Exhausted and now without the beta blocker in my system, I was constantly hot, nauseous, with a stonking head ache, palpitations with a racing heart rate, and barely able to lift my head off of the pillow. My joints and muscles were now rather stiff, cramped and painful from all the seizures, and I had quite frankly had enough!! To feel so incredibly ill and know that a couple of tablets is all you need to put things right, is a difficult and mentally challenging place to be.

9am and day 1 of the autonomic tests. The first beautiful thing was feeling a cool breeze as the porter wheeled me down the corridor. It may sound stupid, but my heat intolerance is so bad that I was starting to feel suffocated and trapped on the ward.

I’ll try to keep the test explanation brief as there was a lot that went on, and this is supposed to be a blog post and not a novel or a trilogy!

The tilt table setup was the same for both days. You lay flat on a table with your feet butt up against a footplate at the end of the table. You have a normal BP monitor cuff on your upper right arm and another that goes on the upper left arm, but this one is much much tighter and than the other. Then you have a small inch long BP monitor that goes around the middle of your middle finger, this is a strange metal device that stays consistently tight and therefore takes a constant BP reading (needless to say you end up not being able to feel the finger at all). Then there is the ECG leads and another that goes to the BP monitor on the finger and to your chest.

They then take readings throughout all of the tests, measuring your HR and BP all the time to see if anything alters it. The first tests all put your bodies autonomic system through daily challenges (i.e the things the body should control without thinking about it “autonomic” = “automatic”)

Long deep breathing – almost overdosing on oxygen
Shallow erratic breathing – starving the brain of oxygen
Squeeze a pressure device and hold it at the same pressure for 3mins – emulating physical strain
Keep subtracting 7 away from a number they give you – emulating mental strain
Blow down a small pipe maintaining a certain pressure – again strain and lack of oxygen
Place an ice pack either side of your right hand for 1.5mins – very painful stress/strain

I think thats all of the basic tests. These were all done while laying down on the tilt table and I can honestly say that every one of them made me much worse.

Then the torture bit – the actual tilt itself. Basically the clinical scientist places three big straps over you holding you on the table and then tilts it up so that you are just about standing up, but not quite vertical. This means that your body is completely relaxed and doesn’t feel the need to tense any leg muscles etc to hold you up. Without tensing your muscles the blood is free to do as it pleases. In my case, gravity won the day, with unbearable and equally fascinating results.

Within seconds of being put in position, my HR was seriously racing (a good 180bpm+). The palpitations from the force of my HR was thumping in my throat and neck with immense nausea. My whole face, lips and eyes where also pulsating in time with my HR and my head ache became frighteningly painful, like someone was pounding my brain with a baseball bat in time with my HR. The palpitations were so powerful that my whole body was being pushed away from the table forcefully with each heart beat.

With in these same few seconds my internal body temperature seemed to go to boiling point and beads of sweat poured out of me. My arms, legs, hands and feet turned to the same colour as beetroot as the blood pooled with heat pulling down like lead weights, and all the veins in my head, arms, hands and feet pushed out with the sheer volume of blood that was pooling.

‘All’ of the above happened within a few seconds… torture doesn’t come close to describe your body feeling like its about to explode. My vision went blurry and I felt as high as a kite and faint. She brought me back down just under 2mins.

An obvious 15min rest ensued before going to the next room and laying on yet another bed, completely at rest for a further 15mins. She raised the bed and placed my feet into the pedals of an exercise bike, which I then had to pedal while laying down on the bed. 3mins on setting one, 3mins on two and 3mins on three, so a continuous 9mins of cycling at 60rpm (this is to test if you are exercise intolerant while laying down) needless to say I couldn’t handle the full 9mins.

I was then fitted with a 24hr BP monitor, which inflated automatically every 20mins and I had to record the time and what I was doing while it inflated. The diary she gave me also had manual readings that had to be taken, such as “a brisk walk”, and readings to be taken at meal times. Its not surprising that the clinical scientist, crossed most of them out and left me with the basic ones, like “at 7pm lay for 5mins and take a reading, immediately sit for 5mins and take a reading, and then immediately stand for 5mins and take a reading”….. HAHA GOOD ONE!!

I managed to lay for 5mins, sit for 2.5mins, but had to lay back down for 2mins, before I could push myself to the max to stand for 1min. Obviously I recorded everything id managed to do.

Dr Oliver (Prof Mathias Registrar) came around that evening and said that for all their best intensions they clearly didn’t realise how bad I would be off of medication and that he would put me back on the fludro, but didn’t want to give me a beta blocker as it would mess up the following days tests. I was also far too claustrophobic to have the MRI done, despite all my efforts and almost making it into the machine (I did try!!) so they opted for a CT of the brain instead.
Day two of the tests. Yet again not allowed anything to eat, just water to drink and I had another dose of fludro in the morning.

Back at the autonomic unit, after taking advantage of the cool breeze while being wheeled through the hospital, I was yet again placed on the tilt table, with the same 3 BP monitors and ECG cables etc. Time for the PROLONGED TILT… yes, not the word I wanted to hear.

“Technically a prolonged tilt is for 1hr, but we only managed 2mins yesterday, so we’ll see how we get on” says the clinical scientist as we sort things out.

Good God! I thought, I’m clearly going to die!!

Now for the surprising bit. Up went the table, and again exactly the same symptoms as above came on within seconds, but just when I thought I was about to pass out, my body seemed to come away from it slightly (when I say slightly I mean VERY slightly), then I felt as though I was about to pass out again, but just the same as before, my body seemed to hold off.

“Do you find you’re feeling a bit better now” said the executioner from my right.

“Yeah… it…. se… seems… to… b… be… hol… ding… off… faint… ing” me trying to explain how I feel whilst trying to stay conscious.

“Yes, that would be the fludrocortisone holding your BP from going too low” she replied.

Great! I thought, they’ve given me a drug that will allow them to torture me for longer!!

She picked up the phone and I heard her ask for a second opinion, and soon another executioner disguised as a scientist walked into the room, unfortunately she was no more senior than my scientist, and I heard her whisper and say,

“Yes that clearly proves things, you’ve got to bring him down, you cant leave him like this”

Fortunately within a minute of her leaving the room, a senior scientist came in and said,

“Yes thats everything we need” and then turned to me “well done liam, thats fantastic as you could only do 2mins yesterday”

I remember thinking, forget the bloody congratulations, how about flipping bringing me back down!!

20mins… yes 20mins or sheer hell, the symptoms were exactly the same, the only difference was that the fludro stopped me passing out. Which in hindsight is great as it proves how much it works for me despite being on the smallest dose.

I then had to drink a special concoction full of glucose and other wonderful things, which basically gave me something major to digest. The scientist left me laying there for 45mins to digest it. My stomach bloated painfully and yet again, sweat, palpitations, racing heart, thumping head ache all came on simply because the blood had gone to my stomach to digest the food.

I found this highly fascinating that simply digesting something, an everyday task that we expect our body to do automatically, much like the simple tasks from the previous day, could send my body into such an awful state. All this because theres not enough blood in the brain… pure craziness!

Oh and then after the 45mins another tilt, this time for 10mins, only it was much worse as I had just digested the food.

Once back on the ward, I had my beta blocker, and went for my CT scan. Soon followed by a trip back home booked this time by the nurse – would you believe it, I had a ‘critical care’ ambulance and two paramedics… I think they really do now realise the severity of things.

The clinical scientists now collate all of their results (I now know why you have to wait so long for the tests, its a very complex thing and very 1 to 1). Next Tuesday, the Doctors, autonomic nurse, and clinical scientists all have a big meeting and sit to discuss my case, each giving their input to come up with the best possible solution to help ‘manage’ my symptoms.

Coming off the beta blockers meant that I couldn’t even sit up let alone stand, but without them it did ease this constant pressure in my head that i’ve had for best part of a year (apparently this is because the beta blockers lower the BP, so they will be swapping this for something else). The fludro, is clearly a miracle drug for me, and Im sure after seeing what a difference it made for me scientifically, they will almost certainly keep me on it and up the dose.

There is going to be a lot of trial and error to follow, but I will never take for granted what my current medication can allow me to do. I have seen the shockingly debilitating state that I am in without them, and its not a place I wish to visit again.

Next Thursday I go to Barts to see Prof Aziz, in regards to the gastro EDS problems, but for now, I’m gradually getting back to what has been ‘normal’ for me over the last year, although not perfect, its a bloody damn sight better than the alternative.

I’ve just treated myself to my very first Taylor guitar, the Rolls Royce of acoustic guitars, but I’ve certainly earnt it!

  1. What an absolute nightmare! I’m so sorry you had to go through with that. Hopefully, it will have all been worth it!

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