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Epilepsy Diagnosis.
Former Member
Posts: 1,876,323 The Mix Honorary Guru
I don't know why but I've re-written this a million times, Its something really personal to me and its hard to talk about.
I've been having severe migraines for months now, To the point I've collapsed in pain on places like trains and I can't be in a bright room, I've had these for months but they were triggered off when I had a seizure in my bathroom one day when I overheated, I was taken to A+E but by the time I'd got there I'd come out of the seizure so the doctor told me to see my own GP, anyways later that day I had another seizure and didn't go to A+E, My doctor referred me for testing to see why I was having seizures, Since this day I've had quite a few more seizures, Tonic Clonic seizures and around 20+ Absence seizures a day. I went to my doctors yesterday to pick up my results and I've been diagnosed with Epilepsy, they originally thought I had a bleed on my brain but that ended up being clear.
So I've been given a seizure recording chart and I have to record every seizure i have including absences, Trouble is I'm not aware when I have them its when Sam when i come out of them is looking at me shouting my name and I'm just very confused. I've been given Epilepsy information packets and told I have to tell people like my manager and everything.
I feel like this is going way too fast, When i was younger for about a year I'd have guaranteed a seizure a month, my mum didn't have time to take me to the doctors so she just pushed it away, but reading my social services notes it sounds like they suspected for a years I was epileptic.
Just feeling pretty confused right now.
I've been having severe migraines for months now, To the point I've collapsed in pain on places like trains and I can't be in a bright room, I've had these for months but they were triggered off when I had a seizure in my bathroom one day when I overheated, I was taken to A+E but by the time I'd got there I'd come out of the seizure so the doctor told me to see my own GP, anyways later that day I had another seizure and didn't go to A+E, My doctor referred me for testing to see why I was having seizures, Since this day I've had quite a few more seizures, Tonic Clonic seizures and around 20+ Absence seizures a day. I went to my doctors yesterday to pick up my results and I've been diagnosed with Epilepsy, they originally thought I had a bleed on my brain but that ended up being clear.
So I've been given a seizure recording chart and I have to record every seizure i have including absences, Trouble is I'm not aware when I have them its when Sam when i come out of them is looking at me shouting my name and I'm just very confused. I've been given Epilepsy information packets and told I have to tell people like my manager and everything.
I feel like this is going way too fast, When i was younger for about a year I'd have guaranteed a seizure a month, my mum didn't have time to take me to the doctors so she just pushed it away, but reading my social services notes it sounds like they suspected for a years I was epileptic.
Just feeling pretty confused right now.
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Comments
Here to listen if it helps
I had epilepsy as a child. Because it happened at night, I was unaware of the whole thing and would just sleep. Apart from the one where I got up at some stupid hour, threw up and went back to bed. I appear to have grown out of them. However, I (as does dad) have a head injury as a result of falling.
Because you're banned from driving for a certain amount of time, (I'm not sure which way it goes - it's either 12 months and another 6 if you have another seizure during that time or the other way around) you can apply for a bus pass. Your council has more information on how this works.
If you do need someone to talk to, have you contacted the Epilepsy Society ?
Im sorry I'm not much heIp I'm sort of in the same situation and can sort of relate to what you're saying. I had mild West syndrome (a severe form of epilepsy) as a baby. With medication it seemed to go away but at the age of 15 I started have these funny turns. I would and still do feel spaced out and dizzy when having them sometimes the left side of my lips and arm will go numb or tingly and occasionally I've have trouble speaking (stuttering) the doctors said it was my migraines (I've had them since I was 9 and on medication) however more recently I've had a few were during the funny turn I've become confused or unable to carry on with what I was doing e.g. trying to cross a road, and as far as I know I've had one (suspected) tonic seizure. And now they are saying they think its epilepsy returned. I also record them but I'm normally aware of them. Again I've been told they will start medication if epilepsy is discover and in will need to be 2 years seizure free before they will consider me driving. There is no clear Patten I can have one and not have another for a few months, I can have a few within a couple of day or a few a day.
Hope you're ok
I have spoken with the epilepsy society as I felt really confused about it all. It might be helpful to drop them an email. I hop your feeling ok and that they cn get them controlled soon
How you feeling about it?
Sick
Sounds really frustrating Redhead
How did it go with the nurse?
*hug*
She basically told me not to have a bath on my own because i could die </3
And that advice, though practical, is a pretty scary image - I've edited it slightly as it was a little graphic and upsetting to think of.
Perhaps it's about not locking the door in the bath rather than the idea that you need to have company - or just letting someone know you're having a bath so that they can be aware of how long you take and check in that you're okay.
In terms of memory, would you be able to make notes of things you want to remember on your phone or a small notepad? Or, it might be worth just letting people around you know what's going on so that they won't be surprised if you're asking them twice about things. I know that doesn't stop it being really frustrating but it might just make things a little more bearable..
Is there any sense that this side effect is going to be long or short term?
Hope you're doing okay *hug*