Temporal lobe epilepsy support or advice. I can't cope with the diagnosis, medication and its affect on me everyday

[Rachel1987]

hi, im 30 and diagnosed with temporal lobe epilepsy Dec '14. I have been in total denial since, i always take my medication but spent 2 weeks ventilated in ICU 3 weeks ago with completely uncontrolled seizures that went on for hours. i have daily brain activity, nothing like it was pre diagnosis, just face tingling, forgetting words or mixing up my own speech. my short term memory and processing what people are saying is awful some days especially since being in ICU. since leaving hospital my left side is weak and slow and sometimes very shaky but i don't know what is further brain damage (as suggested by a neurologist) and what is anything to be concerned about. i don't know where to start with support, i'm struggling to cope with my diagnoses and the everyday effects of brain activity (twitching, poor memory etc). i was doing my master degree but have had to drop out and i haven't worked in over a year. i have a job interview coming up but i know i need to find support.

[Hidden]

That sounds like your going thru a tough time atm, I send you all my best wishes and hugs.

I cannot even begin to imagine or understand what your going thru, I hope you have family around you, you should maybe talk to your Doctor and neurologist about having some form of counselling with someone who is has experience in these areas.

Good luck

[UnwelcomeVisitor in reply to Hidden]

Some might suggest that you should see a epilepsy nurse at the hospital where you attend for your hospital.

[UnwelcomeVisitor]

Hello Rachel.

I am so sorry to hear about how your epilepsy started three years ago. Epilepsy entered into my life when I was only five years of age, which was many moons ago.

My epilepsy has taken on many different types going from petit mal. Later on in life it was diagnosed as refractory left hand temporal lobe epilepsy.

Yes epilepsy is certainly not a very easy neurological illness. This can have many ways of affecting us all.

I went out to work many years before the equal opportunities act was even thought of. And indeed getting past the job interview was certainly a very difficult thing to do.

You now have got the equal opportunities act on your side which will certainly help you to apply for a position, and likewise for you to apply for a job and God willing actually getting the position.

I think that applying for a position with one of HM Government numerous departments would definitely help you.

I also believe that you should telephone Epilepsy Action on their helpline and simply talk through all of your qualms in aspects of your epilepsy and indeed any questions about seeking employment.

Epilepsy Action telephone number is 0808 800 5050

Here's wishing you all the best.

Should you ever want a DM chat don't hesitate to contact me. Richard

[Jenny40 in reply to UnwelcomeVisitor]

Hi Richard like you I have temporal lobe epilepsy for last 35 years and worked before the disability discrimination act came in. I did lose jobs due to epilepsy but that made me even more determined to get into the job I really wanted to do. I had surgery 20 years ago that improved my seizures and I then went for a job as a veterinary nurse and even the doctors where amazed that I got empoyed in that area and there wasnt any time I had to be seizure free to bee a vet nurse. I have since became ill causing epilepsy again and have been unable to work but I have been doing voluntary work for a number of years. As my condition has improved I increased my hours and got more involved in local charities. I am currently working in a local community space that got started up in the last year and currently there is 1 paid employee and myself a volunteer. I have been asked to do a first aid course and be iln charge of new volunteers when we become a charity in the next few months. I am in the wrag group and can now do permitted work and get upto £100 a week without it affecting my benefits. Previously this got stopped after a year but now they have changed it this makes it easier for me. I may have a paid job in the next few months so volunteering first may be a good option to try things out. Good luck Rachel whatever you decide to do and think positive.

[UnwelcomeVisitor in reply to Jenny40]

Hello Jenny and thank you so much for your reply. I am so pleased that you like me are both able to go out there and maintain a job (So many other poor souls will never be able to do this).

As I have previously said it will be a very good idea to ring Epilepsy Action and discuss all your thoughts and problems

Telephone is Hello Rachel.

I am so sorry to hear about how your epilepsy started three years ago. Epilepsy entered into my life when I was only five years of age, which was many moons ago.

My epilepsy has taken on many different types going from petit mal. Later on in life it was diagnosed as refractory left hand temporal lobe epilepsy.

Yes epilepsy is certainly not a very easy neurological illness. This can have many ways of affecting us all.

I went out to work many years before the equal opportunities act was even thought of. And indeed getting past the job interview was certainly a very difficult thing to do.

You now have got the equal opportunities act on your side which will certainly help you to apply for a position, and likewise for you to apply for a job and God willing actually getting the position.

I think that applying for a position with one of HM Government numerous departments would definitely help you.

I also believe that you should telephone Epilepsy Action on their helpline and simply talk through all of your qualms in aspects of your epilepsy and indeed any questions about seeking employment.

Epilepsy Action telephone number is 0808 800 5050

Here's wishing you a very good time and should you want a chat please send me a DM.

Regards

Richard

[Jenny40 in reply to UnwelcomeVisitor]

Mine is also refractory epilepsy and although I am not now losing consciousness I am having drop attacks atonic, simple partial and previously complex and tonic clonic. I also get regular jerks due to other nerve and muscle problems from a number of other health problems. I am under queens square for all problems and they are great there. I did have an epilepsy nurse but havnt seen her for a while now due to being under a neuropsychiatrist who has helped alot with getting myself back out after being housebound for around 8 years due to a hospital infection I picked up years ago that I never got rid of completely. This caused epilepsy again and I have sclerosis of the remainder of left hippocampus again after previous surgery. I am taking pregabalin, tegretol, clobazam and frisium but have no more choices. I was told only drug left in zonegran which GP refused to put me on. I also take a number of high dose vitamins b complex, folate, iron, vit d, and vit c.

[UnwelcomeVisitor in reply to Jenny40]

Very interesting Jenny I too have always been under the National hospital Queen Square.

Anti-epilepsy drugs (AEDs) can work for us over the initial 5-6 weeks but then reality suddenly kicks back in, and our epilepsy has returned. AEDs can sometimes be good for us but many times they can exacerbate things for us

I am a great believer that the less we talk to our friends and indeed our family about epilepsy the better we are. Likewise the more we keep our brains occupied the better we are.

How about you Jenny

[Jenny40 in reply to UnwelcomeVisitor]

I try to have a stress free life and yes agree with family comment. I have no children myself and live alone. I find family tend to think they know better when they know nothing and make the situation worse. I do abit of yoga, avoid arguing and make everything as stress free as possible. My seizures as a child were related to problems at home due to arguing. When my Dad moved out the seizures improved.

Keeping brain occupied on something different is a trick I used to use when having an aura, I would relax take deep breaths and try to think of something different to abort the seizure. Sometimes it worked sometimes it didnt. I try to keep myself busy and it definitely helps.

[UnwelcomeVisitor in reply to Jenny40]

Jenny just out of interest why do no longer continue with your relaxation exercises etc? I would gladly do the relaxation exercises but the breathing exercises meant as you know deep breathing exercises. My auras take place on my Adam's apple thus I am no longer able to do the exercises. Otherwise I thought they were brilliant.

[Jenny40 in reply to UnwelcomeVisitor]

I still will take deep breath and relax if I am having clusters of seizures and if that doesnt work I take the clobazam. I try to do yoga but other health problems at the moment it leaves my nerves firing away with severe pain after. Its called strala yoga and is more gentle then others as its a mixture of tai chi and yoga. I watch you tube and am about to try and do just 10 mins a day at home.

[UnwelcomeVisitor in reply to Jenny40]

Likewise you say that you no longer see either a nurse or anybody else. Jenny may I ask why you have stopped

Richard

[Jenny40 in reply to UnwelcomeVisitor]

Last time I had a nurses appointment they called to cancel and as there was a long wait and I was under the neuropsychiatrist and neurology professor I felt that other people needed it more then I did so said I would ring if I needed to see her again.

[Jenny40]

Rachel for your memory problems have you been refered to see a psychologist to help with those. I play a number of games to try and help me remember things such as names of people I try and associate 2 people with same name and link the 2 together. I have further brain damage caused by seizures and a brain infection after having previous surgery. For twitching take a b complex vitamin it may help or b12.

[Rachel1987 in reply to Jenny40]

my memory is due loss of time, like tiny abscences followed by the overwhelming terror and panic/auras etc i get with these types of seizures. some have lead to generalised seizures (tonic clonic)

what is hard is to explain to people why i cant remember, its not that i have just forgotten, i have no memory

[UnwelcomeVisitor]

Jenny Everyone with TLE all endure memory problems. The best thing is to not get upset or irate over this. This will make things worse.

[Rachel1987]

hi

my terrible memory is helped if i write things down etc so i can manage that as best i can, we can all agree that stress makes everything worse!!

i have a review in a couple of weeks since my medication dose was changed when leaving hospital.

i have been home for three weeks but there is a noticeable difference from my left and right side. my left side is weak, trembles isn't easy to coordinate if at all and is slow to react. i am left handed so it is very obvious with some things like writing, picking things up etc. this has been the same since i was out of intensive care, it is no where near as bad as when i was in hospital but recovery has come to a halt with my left side not improving beyond what it is now. is this normal? to have further longer term damage after fitting for so long?