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Online clinic on epilepsy - May 2014

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I need some help/advice

Postby hevsta4444 on Fri May 23, 2014 5:05 pm

Hi, wondering if anyone can help me. For about 18 months I have found myself day dreaming, being confused and disorientated. In January I was driving my HGV and I blacked out for a few seconds at the wheel. I was fine before, I was on my way home singing along to the radio, when it woke up my head was on the side and I had a tingling in the top of my neck. I managed to pull over and it was a good hour before I started to feel with it again. Since then iv been constantly dizzy, my memory is terrible I can phone people and by the time they have answered I have forgotten who I called. I feel like I live in a bubble and find it hard to work out what's real and what is a dream. I have blacked out another 4 times since. My dizziness seems to be worse at night with car lights coming towards me, or while I'm busy at work. I can find myself staring at walls or out of the windows. My boss will notice this and tell me to go and have a sleep out the back until I feel better, then I get a really bad headache.
So far I have had blood work, MRI, ECG, eye test, ear test and I am awaiting an EEG. People have lead towards epilepsy, but I feel like I'm being passed from pillar to post, my EEG is another month away and then it will be weeks before my results then another 8 weeks before I can see a specialist. I cannot cope with this much longer and it's getting worse. I have looked at going private but can't find anyone that will do an EEG, do you know where I can go to get this done sooner as I just cannot cope anymore I need help.
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Joined: Fri May 23, 2014 4:56 pm

Re: I need some help/advice

Postby Andrew Kelso on Tue May 27, 2014 2:40 pm

Dear Hevsta4444
I’m really sorry to hear your story. You describe a very familiar scenario, which is often frustrating for patients and difficult for them to navigate.
What you really need is to see an epilepsy expert, who can look at all the clinical information, listen to you, try and give you a diagnosis, and then come up with a management plan. They might not be able to give you a diagnosis straight away, and in some circumstances it can take many months to get to the bottom of these types of symptoms.
What will definitely help is if you can bring someone with you that has witnessed your episodes of memory loss , blackouts, or any other funny symptoms, as they can often provide useful information which you are not aware of. If any of the events can be videoed (e.g. using the video camera on a mobile phone) that can sometimes help.
Although the tests that you’ve had are important, in themselves they’re unlikely to provide a diagnosis for your symptoms. In particular, the EEG is likely to provide only a small amount of useful clinical information – it’s still important, but don’t pin all your hopes on it providing the answer.
Whilst going to a private doctor might seem like a way to make this process happen more quickly, in reality it often makes the assessment process longer, as a private neurologist is unlikely to have access to any of your NHS investigations, which they would need to see.
Finally, you mentioned that you’re an HGV driver. The law is quite specific about this – if you have any medical condition that might impair your ability to drive safely, you are required to inform the DVLA of your symptoms and stop driving until they say so. I’m sure you’ve been told this already, have informed the DVLA, and have stopped driving, but if not, please do so, so that you’re not breaking the law.
This is tough on you, but it sounds as if all the right things are being done. There just isn’t an easy way to make the process shorter.
Good luck and best wishes
Dr Andrew Kelso
Consultant Neurologist at Barts Health NHS Trust
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