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Worst seizure yet.

May 21, 2011

It started with a really strange sensation after dinner yesterday. Whenever I took a deep breath in my heart sank, it was almost like the free-falling sensation you get during turbulence on an airplane, or when going downhill on a roller coaster. The sinking sensation was immediately followed by a burst of 4 fast heart beats which then steadied out again. I started to get hot, and the tingling in the tops of my legs came on as my whole arms began to lose feeling… “Great, here we go again.”

I got downstairs and on the sofa just in time before the fitting started, and a 999 call saw an ambulance car with a crew of two from RAF Marham. Not trained Paramedics, all they could do was monitor me and give me gas and air to lower the excruciating pain in my cramped muscles, whilst we waited 30mins for an ambulance with paramedics to turn up. (marvelous stuff, as it eased the fitting slightly, but made me incredibly nauseous, not to mention dribbling with a massive smile on my face).

The Paramedics turned up (the same crew that came out to me last year, before I was diagnosed, so it was good to fill them in with the latest). I agreed with Paul, the paramedic, that we should take me to A+E without giving me any medication to stop the fitting, as this would allow them to see how bad things are without masking anything.

45mins later and they wheeled me into the entrance of A+E and we joined the Friday night queue of paramedics and their patients. It was hot in there and I soon became incredibly nauseous, so asked Simon (the other paramedic, who mum later described as ‘dishy’) for a sick bowl.

I cant even begin to find the words to describe or explain what happened next, but every vein in my body started vibrating as I felt the blood race around my body like water in a hose. My neck seemed to swell to exploding point as the veins pounded (I have honestly never felt so scared or ill in my life).

As this started Simon had return with a sick bowl, just in time as my already shaking body went for it. Every muscle cramped up solid, from my toes to my neck, and it flew in to the most violent conscious fit. My legs were still strapped down with the seat belt, which was certainly a good thing, and the other seatbelt, which was just sitting on my chest, flew off either side and as I shook the bed it clanged and banged against the side – Christ it must have looked awful for mum to watch.

Simon shouted through to Paul, who came round from reception, they each grabbed an end of the bed; “Right, we’re jumping the queue” And they sped me through to resuss, whilst I rattled every bolt in the bed and my body.

Chalom (the nurse who we met on my first seizure two weeks ago) met me there and hooked me up the monitor and gave me oxygen, before opening every window in the room. Paul was fascinated watching the blood go round my body (every vein was still vibrating from the inside), none-more-so than when the arm thing for the blood pressure inflated, cutting off the circulation completely, I lost all feeling and my arm stopped fitting, then within a split second after the arm band deflated, the blood shot back down the veins in my arm, like turning on a pressure washer, i thought the sheer force of it was going to shoot the cannula out of my hand and across the room, f**kin excruciatingly painful!

“Wow, its fascinating watching it happen. You can actually see it coming and going in your veins, and you can physically see all the muscles cramping”.

“Glad someones enjoying it Paul” was my muffled response through the face mask.

As I cooled down, the fitting came back down to a mild tremor, and I was then able to say to them that it was the worst episode I’ve had so far. Out of the corner of my eye, I saw Chalom turn to Paul and nod in agreement “Much worse than the last time I saw him”.

A good 5 minutes after my body calmed down, mum took a step to her left to look at the monitor and then mouthed to me “its 260bmp!!” – and that was after the fitting stopped, I don’t even want to begin think what my pulse was doing whilst I was in the corridor – no wonder my veins were vibrating!

With the fitting Under control, Chalom wheeled me out of resuss and into a bay on A+E, and gave me a fan to keep cool, whilst we waited for my heart rate to come back down to my normal 80bpm. Hours passed and eventually (at 11pm) the same Doctor I saw in A+E after Sunday’s seizure, came and did the usual poking and prodding to make sure it wasn’t an epileptic fit, then took the mandatory bloods.

1.30am we eventually got the usual all clear, and we eventually got home in the early hours this morning. I’m starting to become rather accustomed to this, but things are certainly deteriorating and the episodes are getting much more violent, to be frankly honest, I’m now shitting myself waiting to have another seizure.

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4 Comments
  1. Diane Martin permalink

    My 20 yr. Old daughter was diagnosed with pots when she was 17 and has what looks like grandmal seizures. No one seems concerned, but these episodes are scary and dehabilitating. Some Doctors have said she is faking, but there is no way. Some Drs. Also say they could be pain related. Has anyone found a Dr. Who has addressed this issue? She initially saw Drs. at Mayo in Rochester. Thanks for your input.

    • Hi Diane, Sadly I have never been given an explanation as to the cause of the episodes or what they actually are. Instead I have just learned to to keep calm and get through them, which is far from easy. I wish I could give you more answers, but I have asked a few Doctors and many just say it’s possibly part of POTS… Sorry I couldn’t be of more help, but I wish your daughter all the very best.
      Liam

  2. Dawnique Savala permalink

    I was wondering if you’re ever found an answer? I’ve been having these with no answers. My blood pressure and hr go through the roof and as soon as the shaking stops everything returns back to normal. My muscles tighten so much it hurts and I’m left sore. My Dr is in the process of referring me to mayo.

    • Hi Dawnique, sadly not no. There’s been mentioned of it being some sort of adrenaline overload caused by the flight or fight response of the bodies autonomic nervous system (caused by the POTS). But I’ve never had a definitive answer for them. Hopefully you’ll get some answers at the Mayo.
      All the best,
      Liam

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