Filming my convulsions for evidence???

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Filming my convulsions for evidence???

Postby Queenie_70 » Fri Oct 31, 2014 8:43 pm

Hello again guys,

I know that I seem to be asking a lot of questions at the moment, but while I am up and about, I squeeze in what I can....I am sure you can all relate. :crazy:

My question is, on Wednesday I had one of my regular fits, I was convulsing for about two hours and the Valium managed to slow it down eventually. My mother and father witnessed this, and my mother suggested I film, well, my partner or daughter film one of my episodes to show to the doctor/medical team, anyone, what is going on. Is this a good idea? Or do you think that they will push it off as me being too over zealous about my condition? The problem I have is that the doctors keep calling my episodes tremors...but when you black out, cannot remember what has happened, "tremor" so mush you throw yourself off furniture, isn't that more convulsion??? My doctor claims that it is not a fit because I did not soil myself. :?: :pull-hair: That, apparently, is the criteria for a fit.....

Anyway, again, because you have all been there, done that, I would love to know what your thoughts are. I guess I am concerned that even if I do have someone film what is going on, it will be ignored or I will be told I'm faking it, as it seems that when-ever you talk fibro to a specialist, that is their immediate reaction... :face-slap:

Sorry for the negativity, but I am still recovering from Wednesday's tremors...lol

Massive gentle hugs to one and all...xx
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Re: Filming my convulsions for evidence???

Postby FluppyPuffy » Fri Oct 31, 2014 11:05 pm

Filming them definitely won't hurt, and actually being able to see what happens when one strikes, along with your descriptions of how it affects you, leaves you feeling etc might help bring about some more definitive answers about exactly what they are.

If you can tolerate it, filming more than one might be more beneficial as it could show what happens in particular places, in certain situations etc. As much evidence as you can possible provide will hopefully mean things can be answered as quickly as possible for you :fingerscrossed: :fingerscrossed: :fingerscrossed:

Making a copy of what you do film for the consultant to take away and watch in detail would be a good thing to do as it could also be viewed by other specialists they think might be helpful in getting to the bottom of what is happening to you during one of these attacks.
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Re: Filming my convulsions for evidence???

Postby ..:: lisa ::.. » Sat Nov 01, 2014 12:27 pm

Hi, when I first became ill I was having seizures. My first one lasted around 45 mins, I was hospitalised and had another while there.
I was told they had no idea what was going on.

For an epileptic seizure usually the eyes are open and yes apparently you do lose control of certain bodily functions.

My eyes apparently rolled back and I kept my bowels and bladder under control.

I had an mri scan and got sent home.

After speaking with gp I was told these were probably non epileptic attacks brought on by the brain experiencing far too much information and shutting down to reboot almost, without any evidence on the mri I accepted this explanation and over time the big episodes subsided.

I will give a brief description of what I experienced

I would feel extremely cold and start shivering, this would become uncontrollable and take over my whole body, eyes would roll back and jaw would clench shut. After a time I would come round and not know what had happened but feel so so worn out.

In between the big episodes I was having small attacks a number of times a day.

There are so many different types of seizures and its a good idea to film what youre experiencing, epilectic seizures generally dont last for long unless its whats known as Status epilepticus, in which case an ambulance needs to be called after 30 mins.

Have you had an mri or has anyone suggested and eeg?

Im not sure but without soiling yourself they may not believe these are epileptic in origin so again if you show video evidence it will hopefully give them a better idea of whats happening.

Good luck, its very difficult for us to get our concerns across without being seen as hypochondriacs, let us know how you get on x
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Re: Filming my convulsions for evidence???

Postby Queenie_70 » Sat Nov 01, 2014 9:58 pm

Hi Lisa,

I am pretty well versed with seizures. My youngest, whom died at age 5 years, was Status Epilepticus most of her short life. She would go from a Grand Mal seizure, to a Petite Mal seizure and back again for 17 hours out of the day. Sleep was her only repose, and we are not sure how much of that was truly restful due to the extent of her condition. Split brain surgery was not an option as hers were all over the place (electrical activity wise), so we gave her what medications we could that she didn't react to, cuddled her, loved her and watched her fade away.

What I am experiencing starts with my inability to walk, I get a hot sweat that turns cold and clammy, then when I do try to step I am shaking from head to foot. My neck stiffens up, which leads to massive head pain afterwards, and my whole body jerks around like I am being electrocuted, but there is nothing I can do about it. My breathing is ragged, I groan and moan quite loudly, I have to be held in place for my own safety if I am on furniture as I will throw myself off, my eyes are shut, though do flutter occasionally, my jaw clenches, but I can hear what is going on around me for a while, then it is as if a white noise takes over and then I am gone....I often find myself somewhere I wasn't previous to the attack as my partner has laid me down somewhere to recover when he can get near enough to do so. (Disclaimer: This is what has been described by those who have witnessed the events and what little I can remember, so there maybe more to it). If I get a couple Diazapam into me when it first starts, it fades down to twitching usually within an hour or so, the twitching is odd, as it has been described as my body relaxes, but then just "jumps" for a second before it relaxes again and this can happen for a few minutes before I seem to completely relax and sleep. I cannot be roused from this sleep either...boy I wish I could sleep like that at night....because I was rushed to A&E on one occasion as it happened at the local council and they dialed 999, and apparently the paramedics tried to rouse me by shouting and rubbing my sternum with their knuckles and I didn't respond. Before the Diazapam was given to me my longest attack was from 1300 on a Thursday afternoon to 0700 the following day (Friday) morning.

I was told to get an EEG, MRI, be tested for ME, CFS, and especially MS, but my new doctor seems to think that this is all psychosomatic and that a referral to the Psychiatric department is all I need right now.....

This is one of the reasons I asked about having my episodes recorded, or at least part of one, so that I can say, look....something is happening and I don't like it!!!!
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Re: Filming my convulsions for evidence???

Postby dazzleship » Sun Nov 02, 2014 6:45 pm

hi Queenie

so sorry to hear what you are suffering as you've described - it sounds frightening and terrible for you :hugs: :(

yes I think you should film these fits/episodes - surely then your GP cannot be so stupid as to think that they are all in your head (how on earth they think anyone could fake something like that I can't understand).

hope you get the help you need and soon. xx
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