Epilepsy starting to worsen.

[daveeb]

I firstly started with epilepsy in 1985 and for 15 years really suffered with it. After that time, I was put on the medication I'm on now which controlled it to a point. However, over the last few months it seems like it's come back with a vengeance. I've started to have seizures of a day time leaving me all battered and bruised. At the moment my eye is all gashed open after the last seizure on Saturday. I'm waiting for an appointment with a neurologist to try to get sorted. My GP thinks my medication of 16 years needs to be changed. I am currently taking 1000mg of Epilim and 50mg of Lamotrigine twice a day. I've had 2 heamorrahages, and 2 TIAs over the last few years.

[BaronC]

Bloody hell, you have my sympathy. I had quite brutal generalised seizures, but touch wood, not for 18 years now. Hoping against hope that my meds keep doing the job.

Sending you my very best wishes and hoping you find resolution very, very soon

Andy

[daveeb in reply to BaronC]

Thanks for that Andy. Yes the weekend wasn't very kind to me. I feel like I've been kicked in the face by a horse. Cheers. Dave

[BaronC in reply to daveeb]

Seriously, I recall that feeling all too well. Awful, I feel your pain

[cat3]

I've never had a seizure and, knowing what I know about them, I count myself very fortunate.

How rotten that yours have returned after all those years Dave ; I hope your neurologist will come up with an alternative to get them back under control.

All best wishes for better days ahead. Cat x

[TiredNan]

Dave, so sorry to read that you have been having such a bad time.

I've been on nearly every med for epilepsy. I now see a neurologist once a year and this has been a help to me. I've been on both of your meds, thats a high dose imo.

I hope the neurologist reviews your meds and and can help you out there.

Sending all best wishes

Nan x

[daveeb in reply to TiredNan]

Hello nan. Wow I don't think I've ever called anyone nan in the past so I hope this is taken in the context that it's meant. I've had a few replies to that post. Must've been a good one. I also have heart trouble and just got back from hospital but then I'm still smiling. I try not to let things get me down. I believe in smile and the world smiles with you, cry and you cry alone. It's good to remember that. Dave x

[steve55]

davee itake epilim to control my aggression and mood swings ( 1000mg twice a day ) ive recently been diagnosed as having epilepsy and prescribed toperimate 50mg twice a day.

this was the result of a stroke in 2012

[moo196]

Hope you get some resolution via the neurology appointment. I've had two seizures in the past and wouldn't wish them on anyone.

Hope yr appointment is soon and write down all your questions in advance

K

[daveeb in reply to moo196]

Tell me about it. When you have a wobbler as I call them you know it but then you know we can't do anything about it. Last Friday got me real shook up with a split eye and feeling like I've been kicked by a shire horse. Never mind I think I may have had worse. I've got a big block of Galaxy just to cheer me up. I'll have a chunk for you. Take care and be happy. Dave x

[moo196]

Can you have two chunks for me please as its my birthday and brainiversary ??

[Hdo115]

Hi there

I don't have epilepsy and I can only imagine what you are going through, but many years ago I watched a film with Meryl Streep in it called "do no harm" or "first do no harm" about a child whose epilepsy was so bad that he was in hospital awaiting brain surgery - the mother was so desperate that she decided to try an alternative even if it meant going against the experts and she took him to a clinic that specialised in the ketotic diet It seemed to work for him and all the actors in the film were ex epileptics who had never had another seizure since doing the diet.

I have psoriasis and if I eat certain foods like nightshades and things like white bread and potatoes and anything really that has been tampered by man such as processed foods I have painful flare ups. Goodness knows what additives they put in to make it taste good. If i cut out all these things my skin becomes normal. There is a saying you are what you eat.

Its just a suggestion but maybe one worth checking out. All the very best

[daveeb in reply to Hdo115]

Thanks for that info. My epilepsy is post traumatic that started after being attacked and years later managed to get it fairly well controlled. However, other problems and age are starting to take its toll. Dave

[Hdo115]

epilepsysociety.org.uk/keto... sorry its a ketogenic diet -

[sammy13]

I am on carbamazepine. I have not had a seizure for almost 5 months. Keppra, and epilim, did not work for me. Plenty of sleep on carbamazepine, they are like sleeping tablets :).

[daveeb in reply to sammy13]

Thanks for that. Carbamezapine was my second medication following phenatoin both of which I was allergic. I've been quite controlled for a long time and now I'm waiting for an appointment with a neurologist. See what happens. Dave

[timmarshall666]

I had epilim 14 a day did not help me I was one of the first the try Lavepentrium kapra 1500 in the morning and same again on the night, this has helped me ask about this but you may require an updated mri . All the best

[daveeb in reply to timmarshall666]

Thanks Tim, the last EEG that I had was around the time of my troubles starting and I've always known that it's not light (flashing or otherwise ) that affects me. I think it could have something to do with my own fault because as a soldier I know that I used to drink too much. However, I don't think that I've got that problem nowadays. What I do believe is that it is it comes down to age and other complications. I have heart trouble, brain injuries, BP and HR . Even the specialists aren't sure yet

[steve55 in reply to daveeb]

daveeb im ex forces the neurologist tried to use that as an excuse for my behaviour and seizures. ( i got a right shit on when he kept me waiting 35mins when i had the first appointment ).

while i dont do the 20+ pints or bottles of vodka now, i still have a drink, 4 tins of kestrel a day and once in a ble moon a shot of rum.

[daveeb in reply to steve55]

Hiya Steve. Good to hear off another one of us lads. As I've said before my epilepsy is post traumatic. I was sober only finished work nearly 2 and half hours earlier so I haven't had that thrown in my face although I've had it since. Of course I have a drink. Not at home, only for company .I admit it causes problems but I see a psychiatrist for depression . It's another vicious circle. Anyway, good to hear from you. Take care. Dave

[steve55 in reply to daveeb]

daveeb i gave up smoking when i had my stroke, my gp whos a great bloke started on about my drinking, so i said to him i give that up up youll be telling to cut down on the number of times i have a shag during the week. the drinking stays.

hope your neurologist is better than the asshole i had , lucky he didnt go through the window

i take topiramate 50mg twice daily and 1000mg epilim twice daily for my aggression and mood swings.

have you tried big white wall because civvis may not be able to understand unless theyve been in the forces

[daveeb in reply to steve55]

Good one Steve, that's my sense of humour. I've never smoked (glad of that what with the price ). Yes I only drink very moderately almost none nowadays. However, you can't teach an old dog new tricks. I'll never fully stop. If I stop everything I'll end up in a straight jacket in no time. Thanks for giving me a laugh. Take care. Dave

[Elenor3]

Hi,

I'm so sorry you're battling all of this, and just when you think it's under control it changes Fingers crossed for your search for different medication and with an updated MRI and eeg. Hope you don't have to wait too long for it, enjoy the chocolate x

[daveeb in reply to Elenor3]

Elenor, thank you for your concern, but when you've got it you know about it, it gets its claws in your back and it don't let go. The worst part is that at first you get the bang, then you sleep and when you wake you ache all over, as they say SOB. All the same, I've got strong shoulders and can take it. Thanks again I'll get over it. Dave x

[daveeb]

Oh yes chocolate has all gone. Sorry. I'll go buy some more tomorrow. x

[Elenor3]

Take care - sending you a hug.

[Winb143]

Good Luck and let's hope they give you a better pill to stop these horrid things..wishing you all the best. My Mum always said to me laugh and the world laughs with you cry and you cry alone. Now get to Docs and get something more substantial !!

Win xx

[Winb143]

Sorry you have not been well to say the least the epilepsy is enough for anyone to put up with. I have had Epilepsy since 14 now an old dear!! Stress is a bad thing in life so if you can do something to help stress levels fall ? I sing not too good but I don't care if it lowers stress xx Good luck and do relax and sing, it may lower levels .. Happy ones though xx

[daveeb in reply to Winb143]

Thank you very much for your concern . As you also have epilepsy you must understand the trouble it causes . What got me mainly was I'd been controlled for so long . Oh well , see what the doc says . xx

[Winb143]

It is a rotten thing to have and still scares the life out of me when my arm starts jerking, I think uh oh here we go and panic lol. Which does not help at all, so I decided with my Doc and hubby that I know when I feel rough so I will take an extra pill then and only then, he was okay with this phew as I do not want to go around drugged up and keep sleeping.

Good luck when you see Doc, longest I've been is 6/7 years without one not even a twitch then a strong one came along which scared the life out of me . Keep Well xxxx

[Winb143]

I was on Epanutin with Phenobarbitone but Epanutin made my teeth fall out so dunno what it does to insides !! Got taken off these and replaced with Keppra and phenobarbitone.

Went 6 years without one then Doc changes them !!Grrr . Get pills sorted Dave and all will be well. Good luck

Win