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Appointment for London!

July 4, 2011

Its been a massive week of ups and downs. Monday as you all know was a day from hell, and Tuesday – despite being much cooler than monday – didn’t exactly end very well…

I was laying on my bed, when all of a sudden my heart started sinking, (it feels like an airplane hitting turbulance and dropping, or someone grabbing hold of your organs and pulling on them) put plainly, its probably one of the most awful sensations you can imagine.

The cause of this was an irregular heart rate – three fast beats, followed by a skipped beat and then two slow beats – this reapeated itself for 5 mins, so we called 999. My plan was to take advantage of the ECG that they carry on the ambulance to get a proper reading of my heart to show the abnormality to the specialists. My heart has been doing this quite a lot lately but ive never had it when in medical care and able to record it properly.

By the time I got downstairs and onto the sofa, I had entered into a full blown seizure. The ambulance crew arrived shortly after and I inhaled the Entonox as quickly as I could, but for some reason it took ages to do anything. The crew got me on the ambulance and we headed for A+E.

A few minutes up the road and off my body went again – agonisingly painful as I was still exhausted from my seizure and the trip to London in the heat the day before. The blue lights and sirens went on after my 3rd seizure (two of them in the ambulance on route to A+E) I don’t think i’ve ever made it to Kings Lynn that quick before!

As usual, I laid there and the doctors that know me, popped in for a chat in between seeing their patients, and eventually it was my turn and we got out in the early hours of wednesday morning.

Wednesday, I woke up feeling exhausted beyond belief. My joints were exceptionally stiff and painful and my muscles felt bruised. Eventually I summoned up the willpower to get up, only to realise that I couldn’t straighten my legs, or infact put any weight on them. As soon as I got to a 45degree angle they started to go into spasm.

We phoned the GP and requested a home visit. I slept all day until the doctor came at about 3pm. Fortunately it was the GP that I deal with all the time and knows my situation. To cut a long story short, he prescribed me Diazepam in tablet form (the same muscle relaxant ive had injected by paramedics during seizures). After an hour of taking a tablet, I was able to straighten my legs, and despite still being crippled with pain, I seized the opportunity to get out of bed and shuffle on my bum downstairs for some dinner. I splept all night (whatever happened to these restless nights of insomnia?? I must have been exhausted to sleep all of tuesday night, all day wednesday and all of wednesday night!)

Friday I arranged a followup appointment to see my GP to discuss how the Diazepam had worked. Sat in the waiting room, I started getting hot and the leg spasms started, fortunately my GP called me in just in time and despite him and mum having to carry me to his room, I did avoid having a seizure.

I told him the Diazepam had worked well and I also started to discuss the meds that London tend to use to treat the symptoms of POTS. He very openly and willingly discussed these with me and we have started a small dose of fludrocortisone (It swaps the potassium in the body for sodium and that then allows more water to be held and as a result more plasma in the blood, which effectively raises the blood pressure). Im on a small dose at the moment, and after the blood tests in a weeks time, we should be able to raise this further – obviously a high BP can lead to heart attacks and strokes, so I’m happy to err on the side of caution and start with a small dose!

The beta blocker is not Prof Mathias’ drug of choice for treating the Tachycardia associated with POTS (largely because it leaves the patient with a very low BP and dizziness), but unfortunately, the drugs he will likely use to replace the beta blocker (eg. the drugs that will lower my heart rate) are not licensed drugs, and therefore generally need his say so, in order for a GP to be able to prescribe them.

But best news of all (actually, wait a second… im going to turn the capital locks button on for this bit and write it on a new line…)

I HAVE RECEIVED MY APPOINTMENT TO GO TO LONDON FOR THE AUTONOMIC TESTS!!!!!!!

We’ve phoned up today to confirm the appointment and because of the seizures, they are now going to keep me in as apposed to seeing me as a day patient. So on Wednesday the 17th august I go in and come home on Sat 20th.

As I’m sure you can see – I’ve had far too many seizures this week, which has more than exhausted and traumatised my body, but on a positive, I have started one of the medications that London will inevitably try me on, and I also have just over 1 month until the POTS tests. I can’t quite believe that things are actually moving forward!!

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One Comment
  1. Adriana Marks permalink

    Dear Liam

    We are so glad to hear about the appointment. Finally! Good to know things have now started to move along. As always, we wish you all the best!!!
    Love, Adriana, Peter and Daniel

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