Any Help Please?: I suffer with... - Epilepsy Research...

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Any Help Please?

HeroOfChaos profile image
22 Replies

I suffer with blackouts, have them @ least once a mnth, two so fr this mnth! Basically I fall to the floor & am confused afterwards

My night supervisor has suggested I check out whether I've gt epilepsy or not, but know my GP won't refer me, is there a way round this?

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HeroOfChaos profile image
HeroOfChaos
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22 Replies
UnwelcomeVisitor profile image
UnwelcomeVisitor

Hello,

Low blood pressure can be a prime cause of black outs and the like.

You say that your doctor will not send you to a neurologist for assessment as to whether you have epilepsy. However you do not state why?

If you told us their reason that would speak volumes.

Richard

HeroOfChaos profile image
HeroOfChaos in reply toUnwelcomeVisitor

Going up to a neurologist on the 26th of this mnth as the doctor I saw seems pretty sure that it's absent seizures I suffer from

UnwelcomeVisitor profile image
UnwelcomeVisitor in reply toHeroOfChaos

Well done. Your neurologist will listen to all that you have to say and no doubt send for all the appropriate neurological examinations

Here's wishing you well

Richard

HeroOfChaos profile image
HeroOfChaos in reply toUnwelcomeVisitor

Just to let you all know saw the consultant on the 26th & he thinks the same as the same as the GP I saw @ my surgery, that it's absent seizures

Gotta go up for a brain scan plus tracing, also a 24 hrs heart monitoring

The hardest part when when told the DVLA & they straight away said that I surrender my licence, do this mean for good or will I get it back in the future? This means I have to sell my car hopefully to a garage in another town this wk, gutted!

Angiebaby0121 profile image
Angiebaby0121

You can insist that your doctor refer you as it is not normal to have blackouts they can be a sign of epilepsy as well as other conditons. I would suggest to speak to your gp again and hope you get somewhere soon

HeroOfChaos profile image
HeroOfChaos in reply toAngiebaby0121

Got my tests next Tues & then see the consultant once the results are back

Twice now I've had an episode & bit the inside of my mouth, but don't remember when I did it

Today is the day that I sell my car :-(

Angiebaby0121 profile image
Angiebaby0121

That's good news to be able to get a diagnosis is the first step.

It is normal to bite the inside of your mouth or tongue during a seizure/episode, whenever I've had a seizure this has happened I have never remembered but it hurts like hell.

I know you may feel very depressed about not driving but please try to think positive as once you are seizure free and on controlled medication for 12 months you can re-apply for your driving licence.

Hope this helps, feel free to message me if you want to talk.

Angie x

HeroOfChaos profile image
HeroOfChaos

Sold my car yesterday & that has got me down, not being able to drive as part of my job isn't helping either, it's also means I've gotta rely on public transport & lifts to & from work

You're right it does hurt & be glad when the tests are done & on tablets to control it

gillyhan68 profile image
gillyhan68 in reply toHeroOfChaos

The biting of lips and inner cheek was my first sign that my daughter was not right, she mainly has seizures overnight and the neurologist was like have u seen any, I told him politely that my daughter sleeps in her own room lol. We have video recording every night now and a baby monitor set up she is 14 but asked the neurologist if she will be able to drive. He said if no fits for 2 years and controlled on meds. X

HeroOfChaos profile image
HeroOfChaos in reply togillyhan68

Got my tests today & am nervous as worried just incase nothing shows up & the consultant don't wanna see me again

I've also bit my tongue when had a twitch whilst @ home & a couple of minor episodes @ work last Sun

gillyhan68 profile image
gillyhan68 in reply toHeroOfChaos

Write them all down as evidence for the consultant ( they told us write down pre, during and post episode) fingers crossed for today. My daughter’s eeg only showed epileptic tendency and we were fobbed off with review in 6 months, ours wanted video footage . X

HeroOfChaos profile image
HeroOfChaos in reply togillyhan68

Had the test where they attach wires to your head on Tues & the twitches started soon after, got really bad when used what they call the disco light, both my husband to be & the lady doing the test notice them then

That's what both of us have been doing as had one yesterday in the car that my husband to be noticed & he mticed the 1st ones last yr

Sorry to hear that gilly,any way you can get it reviewed sooner?

gillyhan68 profile image
gillyhan68 in reply toHeroOfChaos

Unluckily Beth had a tonic clonic seizure during the day in July and ended up in hospital only good thing they started her on meds and she’s had 2 since

HeroOfChaos profile image
HeroOfChaos in reply togillyhan68

That's good that she's been started on tablets, hopefully the same will happen to me as unknown to me, I had another episode the other day coming down from the hospital & twitches yesterday

gillyhan68 profile image
gillyhan68 in reply toHeroOfChaos

Hope u get it sorted soon x

HeroOfChaos profile image
HeroOfChaos in reply togillyhan68

Got my MRI scan 6th Nov, had a letter from the DVLA last Sat & my driving licence has been revoked due to dissociative seizures, might get it back in the future

I hope so to gilly

My EEG came back fine, but was warned that things like that can happen as had an episode only a few days before, found out can still have it even though it's come back all clear, worried now about my MRI scan next Mon & what will happen to afterwards as don;t want what happened to your daughter to happen to me as getting these episodes daily & sometimes more than once a day! Can remember it happening when I worked nights in a factory 17-18 yrs ago after falling from a machine a couple of night s before. This is leaving me feeling SO tired & doubting whether I can do my job properly. I know I've got absent seizures & until something is done about it, won't be able to get my driving licence back

gillyhan68 profile image
gillyhan68

Are u keeping a record of what u were doing before, what happened during and how it affected u afterwards. Our consultant wanted video footage inspite of me witnessing 2 of Beth’s tonic clonic seizures . As if u would make this stuff up lol. Can anyone record u on their phone? Fingers crossed hope all goes well x

HeroOfChaos profile image
HeroOfChaos

I'm keeping a written diary of what you said. You can't make this stuff up. The duties I do @ work are done alone & most @ work don't know what to look for, my husband to be doesn't exactly either as thinks I'm ignoring him.

Got my MRI scan today, still waiting for the results of the 24 heart monitoring they did a few days after my EEG as suffer from heart problems.

Thanks gilly

Just to give a update, haven't had the results of my MRI scan yet, the 24 hrs heart monitor wasn't good & the consultant don't wanna see me until May next yr despite still having episodes @ least once a wk, looks like it's heart & absent seizures giving me trouble

Dave40 profile image
Dave40

Ask your supervisor to phone a ambulance when it happens again .They will take you to hospital and then they will know what is wrong with you and then send a report to your doctor.

HeroOfChaos profile image
HeroOfChaos

Had the MRI results & that came back fine, but still having these absent episodes. Been there many times Dave & they just sent me home. Got a Cardiology appointment today, hoping won't be fobbed off like earlier on in the yr

Dave40 profile image
Dave40 in reply toHeroOfChaos

Hope you get things sorted

HeroOfChaos profile image
HeroOfChaos

Thanks Dave, so do I, guess it could be both that's giving me trouble, sort one out & the other will still remain

Biting my tongue & inside of my mouth now, but not seeing the Neurologist until 8th May, had an absent seizure whilst on a bust last mnth, thankfully it was way before my stop, but went through a whole area without me knowing, twitches are coming back with a vengenance

Still getting the absent seizures about 1 or 2 a mnth that I can recall, possibly having small ones more often, seeing the Neurologist a wk today & will tell him all, doesn't look like I'll be getting my driving licence back until towards the end of the yr

Saw the Neurologist on the 8th & it's been conformed that I do have a form of epilepsy, been put on Lamotrigine with the plan to try & get my driving licence back towards the end of this yr. Thanks to all of you for your support through this time & it feels like I've finally got some answers

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