On going Epilepsy problems: Hello All, I am... - Epilepsy Action

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On going Epilepsy problems

5 Replies

Hello All,

I am new to all this. I have been having epilepsy type problems since, 2011 but I have not had a diagnosis. My GP has given me Tegretol 200mg slow release two am and pm.  If  you could help me recognise which type of epilepsy this is.  My fit starts with me getting very hot and uncomfortable, then my muscles in my leg/legs begin to tighten up and I fall to the ground. Many times I pass out and other times I do not.  The period this happens in is short but the period of recovery is long.  I have had scans and other checks but all was normal.

Thank you all for your help.

5 Replies

Hi artgirl, I don't know if telling you about my own experience will help, but you never know so I'll give it a shot.

When I was initially diagnosed many years ago, I was placed on Tegretol. I had to keep stopping it though, as I was a care assistant and it made me too slow: you can't properly care for vulnerable people when you're half zombie and feel like you're wading through treacle. I was never referred to a neurologist, because the GP who "diagnosed" me was a self-proclaimed "expert", and he refused to change my medication or refer me on.

Nine years ago I moved to a new city and found an excellent GP. I was immediately referred to a neurologist and had a sleep-deprived EEG, which showed up abnormal brain patterns that had nothing to do with being autistic - so yes, I'm epileptic all right! It took several years and many failures before we found the right meds for me, but we got there. I have generalised epilepsy (so my entire brain is affected) and so I'll never be free of seizures - but I'm about as controlled as I ever can be.

It's absolutely imperative that you get referred on to a neurologist for this. If it's epilepsy then the neurologist can refer you on to an epilepsy nurse (or "Sapphire" nurse if there is one), and if it's a different seizure disorder entirely (because there are many) the neurologist can perform some non-invasive tests (if you're offered an MRI it's best to tell them if you're claustrophobic: I didn't actually have a clue that I am until I was in the machine, and that didn't end well, because I suffered a panic attack and the whole thing had to be aborted).

If you haven't already, I would also advise that you get yourself an Epilepsy Action membership. Through EA I've come in to contact with a lot of very supportive people who "get it"; I used my wedding four years ago to raise money for EA in lieu of wedding gifts, and I've since become a media volunteer. Without EA, I would still feel quite alone.

Sorry for the ramble, but I hope this has helped somewhat. All the best, and please keep us in the loop.

Gemma x


Artgirl , I've lived with the epilepsy disorder all my life do to I was born with hydrocephalus at birth. I have a shunt on the right side of my head and the tubing goes from behind my ear down the side of my neck and I to my abdomen. As far as my seizures go mine are controlled with tegretol and Keppra . The tegretol is 400mg and the Keppra is 750 Mg. In the past I've taken phenobarbital, Dilantin, as well as depokeen . I've never had a problem with the tegretol it's worked well for me over the years. I've had bad seizures it me at times that are bad enough that I don't remember having it or know what went on afterwards. Those leave me with bad headaches like a migraine. For your sake I hope you don't get the that bad. The best doctor to see for seizures is a neurologist they know what's best to control your seizures other than your gp. Good luck . J. D. Quinn


Hello artgirl

It is difficult for us to say what type of seizures you may be having. You may find it helpful to take a look at our seizures explained information. This explains more about different type of seizures, so you may find some of this sounds familiar. It may also be helpful when talking to your doctor about this: epilepsy.org.uk/info/seizur...

As you have not yet received a diagnosis, it would be a good idea for you to ask your GP to refer you to a neurologist. This will give you chance to talk about what is happening and try to find a cause. It is not uncommon to hear that the tests used to diagnose epilepsy have come back as normal. An electroencephalogram (EEG) for example only shows the electrical activity in a person’s brain at the time they are having the test done. You may find our information about diagnosis helpful: epilepsy.org.uk/info/diagnosis


Epilepsy Action Advice & Information Team




Thank you all for your kind reply's. I have a neurology appointment at the hospital in July. Perhaps I will find out more then.


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