Please Help, undiagnosed Epilepsy?

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alice123

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Hi, I am 20 years old and have cerebral palsy and live in the UK. I generally live quite a lonely life and sit in my bedroom a lot watching tv etc.

I never told anyone about my first seizure which was over a year ago in 2011. This happened in my sleep and I thought it was an earth quake. I was aware of it and could see weird patterns/lights in my mind.

I then had another one in my sleep in 2012 after a days work, so i may have been tired.

I never told anyone because I was scared and hate doctors/ hospitals. for the last 5 years I remember hating my self and I have always been very stressed at the doctors because I will have to show my body to them.

I carried on learning to drive and passed my test and drive atleast once a week with someone with me because I am unconfident driving. Im scared I will get in trouble for this?

I can now make my eyes roll and twitch, so have finally decided to see the doctor but am worried because I carried on learning to drive and passed my test and drive atleast once a week with someone with me because I am unconfident driving. Im scared I will get in trouble for this? I was scared because I thought I would loose my independance!! I used to think i was incapable of buses so didnt think there was an alternative to driving. My parents dont know how hard my life is, I dont talk to anyone about this.

They dont help me with personal things so I just have to learn to cope by myself. For example the answer to stop hating my self would be to get a professional to wax my legs so they look nicer (cos i dont do it very well) especially before getting any tests done because that all im worried about, but i worry too much about what people think!!

Again the main thing im worried about is that ive been driving!!
 
Hi alice123, welcome to CWE!

The UK driving restrictions are at the link below: http://www.gp-training.net/pal/epilepsy/law.htm My understanding of them is that it's up to you to report that you've had a seizure. However if you aren't sure you've had a seizure (and how can you be, you haven't been officially diagnosed), then I don't think you need worry about not reporting your past episodes.

That said, I do think it's important to see the neurologist and discuss treatment, especially if your symptoms seem to be escalating. The sooner they are controlled, the better. Once you get control of the symptoms, you will feel safer driving, and be more confident going out in public. Please do not worry about what the doctors will think of your body -- doctors have seen every kind of body under the sun. The are there to heal, not to judge. Any doctor -- any person -- who makes you feel bad about yourself isn't worth your consideration.

I'm so sorry that the seizures have made you fear for your independence. You sound like you're a very strong person -- stronger than you give yourself credit for -- and I hope you can get some peace of mind over this soon.

We have a great group here at CWE, so please make yourself at home!

Best,
Nakamova
 
I have a feeling the eye twitching is just stress related but I am going to the doctors on thursday for an ear problem. Im not sure if i should tell my mum before hand atleast about the eye twitching, as it doesnt sound so bad.

But im going to tell the doctors about it and as it says online the least that can happen is a 1,000 fine :S I just need to avoid driving now!

thankyou
 
Just want to say Hi and welcome,

Please tell the Dr. EVERYTHING so that they will know how to help you. I know it is easier said than

Is your mother going with you?
 
If you decide not to ask her to back in exam. room with you, you could wait and maybe the Dr. will help you in how to deal this matter and telling your mother.

When I was disg. at the age of 18, I had just got married. When I called my Mom to tell her the results she would not hear of it. My husband went to my Mom and talked to her.
 
Good idea. I've been reading various forums and read that eye rolling can be a trigger? I've had that symptom for at least 2 days and I haven't had a seizure of any kind. Is it still possible it's a trigger?

I'm aware of everything whilst eye rolling/blinking and it's happened less cos ive been busy
 
Hi Alice! I'm going through the same thing right now so I can totally relate. I also don't like the feeling of..."vulnerability", in the doctors office..so you're certainly not alone :)

Hope you get to the bottom of this soon.

Take care
 
I told my mum and she didnt understand why i kept it to myself. Shes so ignorant, she should know that I have a developmental learning disability, its written on all the paper work she has. yes it is better than it was but it still affects my judgement and how scared and lacking in motivation to live my life I was. Surely she should understand what I was saying to her.

I told her I dont care about my life and she didnt understand. This is why i never talk to her cos i never get a reasonable response from her.

She knows I spend most of my time in my room and dont see many friends etc
 
Hello Alice,

defo see neurologist, you don’t want these sensations getting worse....I would not worry about the fact that u got your license (you can easily plead ignorance) but you need to stop driving until you are sure, because u could hurt yourself or others.

My Son of 27 has epilepsy. I am so sorry that you have to keep so much of your pain to yourself :( My Son sees a therapist, it’s a Godsend, he can blow off all steam and he does :). I would think very likely in UK (we are in Holland) that your health care would cover this...and once you are real comfortable, would be great to bring your Mum along, maybe she could learn (or at very least recognize and acknowledge) the trials and tribulations you are suffering with and a 3rd party can really help bring/deliver the message

Do not sit lonely, come and join us anytime/all the time :) there will be plenty of people who will learn from your story and who can use your support too.

Warm welcome to CWE!
 
Hi thankyou! I find music really helps me get things done when I dont feel like doing anything and puts a lot of things into perspective.

I will see what they say, it will of coarse be awkward telling them everything but ive finally realised Its pointless keeping it to myself anymore.It just doesnt make me feel happy not socialising and keeping myself locked away in my bedroom.

Yes I think a doctor could explain my situation better. She seems to have come to a conclusion that they way ive grwon up is fine when I know that if it had been gone about a slightly different way, I may not feel this way. But I will feel much better once this weeks gone by and will let you all know how it goes.

I feel I've let a lot of people down, like the friends I do have, I felt I couldnt tell. I used to want something bad/ a seizure to happen so people would realise or I would remember how bad it was instead of sitting here in denial.
 
Not funny at all Alice, this type of flashing pictures are posted on purpose with the intent to cause seizures to epilepsy patients.
 
Oh i didnt realise :S Luckly I'm not affected!! Thats not nice. and thats really bad who ever does that!!!
 
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Got my doctors appointment tomorrow, quite nervous to be honest. I've read lots of interesting threads about diagnosis and heard its sometimes not easy. hopefully everything will be ok. I have no idea what can be done before a neurologist appointment? I know the referal can take more than 2 months, so i just wondered what happens before hand?
I explain everything
Tests they do before hand like blood tests and blood pressure etc
it would be really useful to know so im prepared.
 
I Know How you feel

Hi Alice123

I was undiagnosed for most of my teens and adult live and frightened to go to the doctor for fear of being told, even though I am an intelligent mature male, I was going mad. I am absolutely certain you will here that a lot in this forum. I am also disabled in other ways, ain't we lucky/

But I am here to tell you that the world is not as bad as it seems right now, in three weeks time, even with what is happening to you it is still christmas, and a week after that a New Year. So long as you have a positive outlook on life, not always easy, but I always try, and you always try and have a smile on your face, you will get through. Epilepsy is just another test and we are all standing up to the little trials our brains throw at us, all you have to remember is every day you wake up is a victory for you.

I have had Epilepsy for 42 years most of them I didn't know but I controlled what was happening to me. Now I have the help I need. You will get the help you need.

Merry Christmas and Happy New Year
 
Hi alice123

I can certainly relate! I have cerebral palsy too and I am having problems with undiagnosed epilepsy or undiagnosed something else - who knows? I am not really supposed to be driving at the moment either, but still do around town.

Prob not a lot can be done before neuro, just keep a record for yourself so you are able to explain your symptoms easier. Hang in there and know you are not alone! :)
 
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