Hospital visits

[gotmarried2012]

Hi I urgently need to know I have had seizures for a very long time with out medication my neurologist said its not epilepsy because I would be dead is this true I urgently need to know as I am so destraught about it all many thanks.

[AMH76]

Hi gotmarried2012,

Your Neurologist must have given you some indication as to what you have and why you aren't being given medication. What treatment has he/she given you over this long period?

[rustypen31]

It's difficult to know if you have seizures. If you have them, they must be caused by something. A doctor would be able to tell you the cause and would give a prescription.

[Rachael1967 in reply to rustypen31]

Drs got no idea Seizures occur at all

[Rachael1967]

Get another opinion

[Barney1942]

Hi there,

If I where you I would suggest contacting your G.P. and getting him to refer you to another specialist after all it's better to get a second opinion.

There are good specialists and bad ones out there. As for your specialist suggesting that you would be dead well that is very unprofessional of him.

[gotmarried2012 in reply to Barney1942]

Hi my name is Julie thank you so much for the advice to much has been said they have ruined my life they have said there none epilepsy I have researched this they never explained it to me but I realise what they were saying was not right what I discovered was that people who suffered that condition had flash backs before seizures this I could mot relate to in any shape or form I have things that set them of even the t.v I have not whatched any in 2/half years I have warnings before the house lights go on i have really strong smell of gas and sulphate and other smells it all started after a shoulder operation. I have seen neurologists my gp was never interested in my seizures no one ever asked me questions about them it has effected my mobility i am now in a wheel chair this has turned my life up side down my voice has changed my face has changed .could not ever imaginet in the wourld this happening less than 3 years ago I was getting married and had a job now I am at war with people with there opinons I have took my case to the onbudsman because I have been left wth all this on my own my husband has been amazing but has been destroyed what people have been saying thank you for your message hope we talk again

[AmyBadd in reply to gotmarried2012]

Oh my goodness, you really have had an awful experience. I'm sorry, I don't really know what advice to give, because I have not experienced most of the problems you are having. I just want to say good luck and I hope you deal with some more sympathetic people from now on! Also get well soon xx

[Hidden]

There must be a reason for your seizures! Surely your doctor or Neurologist must have put you on something before? Perhaps he has also told you what the problem is if not epilepsy.

You need to see and speak to your Doctor/Neurologist in this regard.

Les

[AmyBadd in reply to Hidden]

Most people with seizures do not know what the reason for them is, though.

[Hidden in reply to AmyBadd]

Most doctors and Neurologists are equipped enough to let the patient know what might be causing the seizures.

I know what my triggers for seizures are, and I know the area of the brain that is affected.

Thank you.

Les

[AmyBadd in reply to Hidden]

I know what my triggers are but there is no obvious reason for my seizures - no head trauma or brain tumour. This is true for most people with epilepsy. In my case I am "lucky" enough that my symptoms fall into a well defined syndrome: Juvenile Myoclonic Epilepsy (JME), so this helps the doctors treat it, but I think a lot of sufferers do not even have this level of clarity.

[Hidden in reply to AmyBadd]

No problem. I do know what mine where caused by - a diving accident at the age of 14, where I hit my head on a diving board.

Good luck.

Les

[Hidden]

Hi, another suggestion would be to seek a 2nd opinion!

This I think is vital!

Regards,

Les