I just wanna know.

[sarm]

Okay so I have been suffering from strange symptoms for like two years now, but they have become progressively worse with time. I had a clear mri scan but my eeg was inconclusive. This has led them to say it maybe partial epilepsy. My symptoms are severe twitching of muscles everytime I sit or lie down, disorientation, dissociation, feeling like my brain is tingling and painful, dizziness and off balance etc. So I thought not epilepsy but anxiety... I dont know its all so confusing. Anyone similar? Opinions? X

[sporan]

Hi sarm,

Sorry to hear about all your problems.

I have partial complex epilepsy and a lot of my symptoms are very similar to yours, but my diagnoses was a little easier to asses as the MRI that I had showed a lesion in the left medial temporal lobe and even then took nearly 9 months before the epilepsy was confirmed, the temporal lobes (left and right) are, apparently, an area that is often the focus of partial epilepsy (sometimes called focal epilepsy).

I am not medically qualified and so can't say yes or no as to whether you actually have epilepsy or not and I fully understand the uncertainty of a non definitive diagnoses but it must be borne in mind that epilepsy is a very difficult condition to diagnose and asses properly because it presents in a very individual way with every person and unless they can actually catch a seizure happening on an EEG or find a particular area of the brain on a scan that is damaged or affected then the neurologists can only give you their best guess.

You don't say if you have been given any anti epilepsy drugs but, if you have, you have to be patient because their effect isn't instantaneous and can take several weeks to build the dose up to a base starting level and then maybe many weeks or months for them to become effective, occasionally seizures can be triggered at the introduction of the drug but should soon settle, even then adjustment to dose is fairly common as is the addition of additional drugs or even complete changes of medication to find the one that suits you and works for your particular type of epilepsy. If you look elsewhere on this site or register with one of the main charity support organisations, a neurosurgeon in Bristol recommended the Epilepsy Society to me, but they all do good and valuable work, offering valuable and relevant support.

It is often a comfort to know you are not alone in the uncertainty and the condition and that although it may be a long time coming there is light at the end of the tunnel so try and be positive and don't be frightened of asking questions.

I do hope this is of some help and reassurance to you and wish you well.

[sarm in reply to sporan]

Thank you for the informative response much appreciated xx

[sporan in reply to sarm]

You're very welcome.

[EpilepsyAction1 Partner Epilepsy Action]

There are many different conditions that share similar symptoms. Sometimes it’s only by starting on epilepsy medicine and seeing if the symptoms improve or stop that can confirm a diagnosis. Another helpful tool for your doctor could be a diary or a recording of your symptoms.

epilepsy.org.uk/info/diagno...

Many people with epilepsy find that taking care of their wellbeing can help them to have as few seizures as possible. This simply means taking some steps to looking after your body and mind. Our information includes techniques that could help manage stress. It may be that this approach could help you. We have more details in the wellbeing section of our website: epilepsy.org.uk/info/wellbeing

Regards

Diane Wallace

Advice and Information Team