Non Epileptic Seizures…..

 

What the experts say they are…… The following information was taken from www.epilepsy.com Psychogenic Non-Epileptic Seizures – PNES - are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency.

 

I think it was in 2012 when @raspberrytalk had his first seizure. To cut a long story short we went to see our GP who made a referral for @raspberrytalk  to be tested for epilepsy. So he had a very basic EEG test which came back clear for epilepsy … which both myself and @raspberrytalk were relieved about.  But it meant we didn’t have answers and meanwhile these seizures were becoming more frequent and violent. Some of the medications @raspberrytalk is on are sometimes used to help people with seizures mainly epileptic, but they don’t seem to work for him.

Because the doctors and specialists can’t find anything biological causing these seizures they put it down to stress, “unresolved psychological/emotional issues” and so on and there is supposed to be triggers.
I’ve been watching my husband have these for a long time now and I have even tried to see a pattern - and I’ve yet to see one. So how on earth can someone who doesn’t really know my husband or even seen his seizures say they’re all in his head? Surely if this was the case I would have seen these triggers and could help my husband avoid them when possible? I’m constantly telling the specialists that I can’t see a pattern and that there appear to be no specific triggers … but they just ignore me and still ask us to keep a record of the seizures and what he is doing/thinking/feeling when they start … very frustrating for both myself and @raspberrytalk.

@raspberrytalk even has these in his sleep! I have to sleep in a separate bed away from him because I have been injured before by him having a seizure while in bed … not a lot of fun getting smacked in the face, elbowed, kicked……. 

I believe that if more in-depth tests were done that they may reveal something. But where to start? @raspberrytalk has already had a spinal tap done, MRI’s done, blood tests, EGG but all these have been basic tests … what other tests could be done if we had money to pay for them? Maybe a Functional magnetic resonance imaging with contrast, a more in depth EGG or further/different blood tests? What is the answer? Unfortunately, without money to pay for more tests privately, there not much more the doctors and specialists can or will do. So for now all the medical professionals are treating these seizures as a mental health condition …!

 

So, how do other people react to seeing or hearing about these seizures?

Tell most people its not epilepsy and they seem to think they’re not as serious or as harmful to the people having them. I assume its lack of knowledge making them think this, but these types of seizures are just as bad and, unlike epilepsy, a lot of the time the person having one of these seizures is aware of what's happening to them and they can feel it too!

When @raspberrytalk has these while out in public most people just stare, but there has been some people who have asked if I/ we need some help. If we’re in a shop I usually ask them to get a First Aider who can then assist me with keeping @raspberrtalk safe. Going food shopping has become a real challenge because of these seizures (just read the following link seizures in supermarkets).

I was recently asked to describe these seizures and I found it very difficult to put them into words, mainly because when remembering seeing my husband have these it makes me very emotional and usually end up crying.  One way I do end describing them is by referring to the film The Exorcist because a lot of the movements he makes remind of some of the scenes in the film for example this! Also, a lot of the movements look like muscles tightening, he sometimes arches his back and twists his neck in such a way I think his head is going to turn round like in the film! 

 

So what do they feel like? Let’s ask @raspberrytalk

Non Epileptic Seizures, PNES, Non Epileptic Attack Disorder, Pseudo Seizures, Conversion Disorder Seizures. They have loads of different names for the same thing – but I’ll start by saying that everybody’s NE seizures are different. What I go through can be wildly different from what others experience, so I can’t presume that this is what everyone else experiences. I also get absence seizures (or possibly Atypical absence seizures).

Regardless of what they call them, for me the NE seizures are excruciatingly painful and terrifying.

 

I assume everyone understands the basics of how we move, that muscles only pull not push? An example – at a basic level, if you want to lift your forearm your bicep contracts. To lower it again your triceps contracts. Obviously there’s a lot more to it than that involving tendons, bones, etc, but you get the point.
If you’ve ever lifted heavy weights, or had an arm wrestle you’ll understand what it’s like straining your muscles against something. Well now imagine what it would feel like when ALL your muscles and tendons decide to pull or contract at once! What would happen to our basic arm example above if the bicep and triceps decided to BOTH contract at the same time!?
Well that is what happens to me. Arms, legs, shoulders, neck … all trying to pull against one another in all directions at the same time. We have the fun of abs spasming while my back muscles join in, so I start knifing backwards and forwards at the waist. Apparently sometimes the back muscles win and I’ll arch my back so high that only the back of my head and the backs of my heels are touching the floor!

My jaw locks tight. I have stress fractures in all of my teeth now. My chest and diaphragm go mental, so my breathing is buggered and I start juddering like I’m attached to a jackhammer. And lets not forget the clenching and unclenching of fingers and toes, wrists and ankles and everything in between.

So while my arms and legs are flailing about, bashing objects, the floor … sometime people … I can feel all of this. The agony in my muscles, tendons and bones, my arms and legs bashing things. Even my head smacking repeatedly into the floor because of the shaking and my neck muscles going “exorcist”!

At the same time that I’m going full on possession, I can barely breath because of hyperventilating or holding my breath while my muscles strain, my heart (a muscle remember) is pounding a drum solo and trying for the world record of “most beats per second”, my blood pressure is up, blood sugar is down, I’m barely aware of what and who is around me or where I am, I can’t see properly, I’m screaming in my head because I can’t scream out load (no air, jaw locked, etc) and all I’m fully aware of is that my entire existence, at this moment, is pure, agonising, burning pain. Just pain. When I do try and scream out loud it usually just gets cut off while my throat closes and stops me breathing.

And lets not forget the terror. What is happening to me? I can’t control my body – what if it never stops? Is this it? Am I going to die this time - have a heart attack or burst a blood vessel in my brain? Stop breathing? Are my muscles going to tear or a tendon snap (it bloody feels like it!)? What if I survive, but get brain damage? Snap my spine and end up in my wheelchair permanently? Burst blood vessels in my eyes and go blind …. and on and on and on … all running through my head, while at the same time still worrying that I might hurt my wife or someone.

Afterwards I feel like I’ve run a marathon and then gone 5 rounds with a seriously pissed off tiger. All I can do is lie there, completely unable to move, everything hurting and aching and just concentrate on breathing … IF I’m lucky … because sometimes what follows my seizures is the fun of a panic attack!

 

And what have I been offered at every turn, by every doctor I’ve seen? A referral to a psychiatrist. Hmmm, well, it must all be in my head then.

  

What @raspberrytalk seizures look like.

 

 

My Health Part 2

Some of you may remember me writing a blog entry about my own health. For those of you that didn’t, you can view it here http://carersvent.blogspot.co.uk/2013/06/my-health.html.
I wrote that back in June last year and since then a lot has happened.

I think I will start with my mental health. Well I finally got referred for some counselling, but unfortunately the only kind of counselling available on NHS is CBT. But I thought I would give it a go anyway …. and you know what? It has actually helped!
I have become a bit calmer as a carer and I have also worked through some of the guilt I had bottled up. So in this instance CBT has helped, but the only trouble with it is that it only deals with the hear and now and not the past.
So what about my physical health? Well I personally don’t think that has changed much. It’s no worse or better, but I do now at least have some answers.
For the past few years I have been having problems with my legs. To cut a long story short, I saw a neurologist back in January this year and he has given me a diagnose of Fibromyalgia. Yep, the dreaded F word! Those of you that read my blog and have followed my blog will know that my husband @raspberrytalk suffers with this condition as well.

So is this just a strange coincidence or is there more to this condition? This is something I will talk about more in another post.  

Also, I have been given a diagnose of a condition called syncope, which is basically another word for fainting spells (well that's how I understand it).
So, I have some answers to what was and still is going on with my health. Meanwhile I am still having to care for my husband full time. One of the things my CBT lady wants me to do is to have more me time, which I have done, but I have only been able to do this when family were visiting. Yes, having time for myself is important, but it is hard to do when you are the prime carer for someone with not only physical health conditions but also mental health problems.
Since last June I have had loads of blood tests. If I remember right some of my markers were slightly high, so the docs wanted to check them a month later. When they rechecked them they were then showing up normal, so that was the end of that.

 

 

The neurologist put me on vitamin D and he also requested I have some more blood tests! Hopefully these will give the doctors and me some more answers.
I also have a had a psychiatric assessment because I was having hallucinations. The psychiatrist basically said there’s no real help they can give me because they no longer do counselling …. what a waste of time that was …. never mind.
But it did give me opportunity to talk about things, however briefly, and I did get prescribe something to help me sleep. I now no longer take SERTALINE but instead I am now taking MIRTAZAPINE at night to help me sleep … seems to helping so far.

Flu Jab refused

Last Friday me and @raspberrytalk booked in our flu jabs which as far as we are both concerned are eligible for them.  

This is who the NHS say should be eligible for the flu jab.  

As most of you will know @raspberrytalk has ME and Fibromyalgia. 

When we went in on Tuesday 5^th November the nurse politely explained to @raspberrytalk that she had been told by the practice manager that he was not eligible for the flu jab. WTF is almost the words I said to the nurse. @raspberrytalk was bemused and asked why this was the case and she replied that he doen’t have any neurological conditions or an immune system problem!

He then had to explain to the nurse that he has ME and Fibromyalgia, which are both Neurological disorders … and we then discovered that neither of them, nor his arthritis or seizures are listed as “active” problems on his file! 

As far as me and @raspberrytalk are concerned he should be eligible for the flu jab, but the nurse said that none of that information was on his records and she then explained that  even if it was, the surgery do not recognised the fact that ME and Fibro are neurological disorders. She also said that @raspberrytalk’s latest blood tests showed that his immune system is currently normal, so he wouldn’t get the jab because of that. 

 

Well at this point I was very pissed off and so was @raspberrytalk to say the least.

Anyway I had my jab done. 

@raspberrytalk explained to the nurse that he was concerned about the overall care he could expect to receive from the GP’s at the surgery if they don’t consider ME as neurological (i.e. they think it’s all in the mind).

I am also concerned about this as @raspberrytalk’s ESA renewal is coming up very soon. As most of you will know it was a real battle for him to get any kind of benefits.

If we don’t have the support of our GP and other health professionals, what hope is there for us?

It feels like we are fighting a battle that we will never win and it’s a battle we are fighting alone ………… 

We have been invited in by the surgery to “discuss our concerns”(!) I will update you all on this.

 

Take Care of Each other

Carers Vent

 

If like @raspberrytalk you have ME or Fibro and been refused flu jab please contact me on @carersvent

 

UPDATE: 7th November 2013

 

spoke to our GP and apparently according to the records they received from our last surgery there is no record of @raspberrytalk being given a 100% confirmation that he has ME or Fibro.

 

Also the only active problem on his records is his mental health problems and nothing about his arthritis which is a active problem.

 

really not sure where we stand or what we can do any advice would be welcomed.