Trip to my neurologist (12 miles away) yesterday and it was confirmed that it was 99.9% certain I will never regain my driving license, so that's me now a true ex-driver . Also confirmed that the emotional issues and severe mood swings I've suffered lately are likely to be related in part to my epilepsy medications.
There was some other suprising news as I was told that the neurosurgical team (30 miles away, who I've not heard from since Jan) have been discussing my case and looking at options to help and that they would be calling me in to discuss the options shortly. Also my epilepsy care could be shifted to their specialist team if I wanted, because in the event of any surgery/radio therapy they would be involved anyway and my full history would be available to them easier. Having discussed in clinic with my poor old, lovely wife, we have taken that offer, only trouble is it's an hour each way travelling by car but with little to no parking on site and mixing car with park and ride makes it closer to 2 hours but seems worth it. My neurologist also said he would flag up the issues I've been having and suggest a change in medication to them.
Still a bit of hope I guess as I had been told by the surgeons before Christmas that surgery wasn't an option, even if awake there was zero chance of coming out complete so guessing maybe relate to biopsy and that they are trying to weigh up benefit against risk.
Been a bit of a bumpy ride the last 3 years but at last it seems that although I might not like the answers that at least I am getting some and some possible action to maybe improve my quality of life, or at least maintain it as long as possible.
Not too sure if this a happy post or not... Gonna make it happy as answers are coming... plus I get to keep my bus pass!
Sorry for the ramble but probably the most exciting, worrying news I've had for a long while but at least news.
Thanks all this forum has been great help over the last few years and long may it be so.
Sporan
P.S. Haven't seen any posts from Emma for a while and hope all is well since her recent move.
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Thanks for the update which is a difficult mix as to whether things are good or not so good. However, I guess some relief comes from having some explanation about what is happening and why plus been given some choices about having your epilepsy care in the same place as your neuro surgery team.
It is interesting that you have been told that your severe emotional issues and mood swings are in part due the epilepsy medication. I was experiencing similar high anxiety, sleeplessness and inexplicable crashing moods for no identifiable reason when I was on anti convulsants and then the same thing continued to happened on antidepressants. When the doses were increased things got worse. 3 years of this and then it was me that worked out the connection but I still have trouble getting the professionals to accept this!! Now without those medications my mood crashes are less severe and I believe the mood lability I still exhibit is now because of the frontal brain injury.
My thoughts are with you Geoff and your wife as you travel this very uncertain and worrying road ahead of you.
The medication that is renoun for the problem apparently is levitericetam (Keppra). Apparently its a really powerful and effective epilepsy treatment but can cause the probs I've been having eithergradual build up or sudden onset. Could have warned me when I started the treatment so I didn't end up thinking I was going insane!
GP said it was stress and anxiety over my situation or depression and I'm currently taking councelling from local charity group that deals with people with long term or terminal health problems and as luck would have it the councellor I am seeing has epilepsy so put me on ther right track.
Hoping all is well with your self and you son. Centre aprks is still there so it did survive the experience.
Yes Keppra was the anti convulsants culprit for me too. I was discharged from hospital on it and up it was 2 yrs later before a psychiatrist realised that could have been causing my extreme mood problems and started to wean me off it and start an alternative. However, because it appeared that I was depressed I had already been started on antidepressants and these were continued with some changes along the way because I still had crashing moods. However, it was me who realized that when the doses were increased my mood problems and sleep problems got worse rather than better! In the end I got so despairing because nobody would listen when I kept trying to explain that I didn't think it was depression because I wasn't ruminating and thinking negative thoughts except when my mood crashed and I would then despair over why it was happening and felt I couldn't cope with this crazy mood stuff anymore. Yes like you I thought I was going crazy!! So I then weaned myself off the anti depressants expecting that my mood would drop to such a depth I would end my awful life. However, that didn't happen!! In fact my anxiety lessened, my sleep improved and my mood stabilised a bit! I still suffer with mood lability but what is apparent now is that it is the inability to regulate my moods because of the frontal brain injury damage rather than depression so that's why the anti d's made things far worse rather than better! I too have had various professionals diagnosing it wrongly as depression.
My son has recently won an award in the Kent Children's Achievement awards for the category of Exceptional Young Carer. We have an awards 'do' to attend on the 2nd October. My son was nominated by Andy who has been involved in setting up the Headway Support/drop in group in my area.
Have surprised myself a couple of weeks ago as was browsing holiday ideas and ended up booking for us to go to Butlins for Xmas!! The more I thought about it the more I realized it was the best idea for us. There will be lots for my son to do and loads of entertainment, a fireworks eve etc so the two of us won't be stuck at home by ourselves getting fed up and winding each other up with tensions going off the ricther scale!! I have booked in their Wave hotel which has a games console room which my son can go too so I can have some quiet/rest time. We have a meal package so I won't have to do any self catering (which I can't manage now) and on Xmas day we get a 5 course Xmas meal!!! So much better than the xmas's since my illness and bi when I have only managed pizza and nibbles on Xmas day and then going to a Harvester for a festive meal on Boxing Day!!
Was watching that Longleat programme last night and I now understand the eccentricities of Lord Bath that you described to me previously!!
Yes fun guy isn't he lol. Hope your son didn't watch the murals or awkward question could arise
Great to see your son get the recognitionhe deserves. I think sometimes there is so much focus on us that htose that have to put up with and support us get a bit forgotten.
Butlins sounds a great idea and will certainly take the pressure off both you and your son so have a brill Chrimbo when it comes. Ih by the way whats wrong with pizza? Always a great treat even at Christmas.
Boxing day is my pressure day because in our house it's know as 'Prawn Cocktail Day', bit of a trdition I took over from Dad making a swimming pool of prawn cocktail from scratch, chopping salad and making sauce from start to finish. Served in soup bowls chilled and mixed with brown bread or crusty rolls. Not everyones cup of tea but fun day with board games etc and NO telly. Brilliant!
I hope you're not too disappointed by the driving verdict Geoff ; it's quite a game-changer. I was lucky in getting back to it but I don't enjoy driving the way I used to. I took the train to town last week and was surprised at how liberating it felt.
Having to travel further afield for treatment is getting to be the norm these days ; local specialist facilities are closing down everywhere. More cost-cutting I expect.
But alongside the travel complications, I hope you can continue to keep your spirits up amidst the chaos of life with a dodgy brain.
You're very special here Geoff......................so take good care of yourself !! xx
PS I imagine that Emma is focused on her living arrangements & will be back with news once things are settled ; I hope so. x
Loss of license hard to contend with reall as when I left school at 16 I did an apprentaship as a car mechanic just so I could learn and practice the basics before I hit 17. Then became a lorry driver to indulge in my driving which was always a release for me. Any row or upset and off to the car for drive to cool down.
Still it is what it is and now I just have to try and get by without.
That's exactly what I used to do when wound up ; head straight for the motorway with radio on. Of course it was like a desert at night in those days, like one's own private road, but not any more.
I hope your humour will keep coming to your rescue and pulling you through any more dark periods. It takes courage to adapt to some of the radical changes we face, on top of the medication problems and other bi issues.
Well the surgeons were always a long way away so I just as well have all together it seems to make sense.
I must say I've had a couple of really bad and low months but as with all things there are plus sides..... I've managed to lose 1st 4lbs since Christmas so getting to be a slim trim defunct machine lol. Now a mere silth like 12st 10lbs.
I expect you are right about Emma. She did pop her head over the parapet a while ago to say she was finding it hard work settling along with all her other probs but would still be reading posts from time to time so if you read this Emma bestest wishes.
As for the driving I havn't driven now for over two and half years but my confidence in using my bus pass unless I have someone with me is a bit missing because of my 'blank moment's' causing doubts all the time.
From reading your post, you seem to be a bit uncertain as to whether this a good move or not, I'm hoping it is a good one :).
I can understand how you must be feeling as I have abeen in a similar situation a few times before. That's right, Southampton General Hospital was like a second home for a while.
I do wish the best outcome for you and your family :).
It is quite interesting how your neuro has pointed out the emotional issues and mood swings possibly related to the medication.
When it comes to pharmaceutical drugs, I do not trust them or the pharmacies and docs who suggest you take them. I would prefer to avoid the docs now at all costs when it comes to menial things like a flu or something.
So, I am not too surprised to hear about what your neuro said and I do think it is good that they pointed that out.
My grandad swept up asbestos when he was young and had breathing problems for years. He had been on different meds for years and usually one drug could lead to another symptom... Then another, and another... And so on. My grandad is dead now. He went in 2007.
My nan had been on meds for a few years too. She has been through a few meds also. She had to take meds to control her blood pressure, I think it was, then her breathing started getting bad and was taken into hospital and eventually passed away.
So, there are other reasons why I do not trust the pharmaceutical industry but as part of the reason involves my granparents then I do not trust them or want anything to do with them.
Asbestos exposure wasn't thought a problem back then. I used to blow the dust out of brake linings (all asbestos then) with an airline with no mask, used to cut it with abrasive wheels etc. etc.. In the factories they used to have 'snowball' fights with raw asbestos fibre. I have a photo of in a product manual showing a guy spraying abestos fire protection (worst type of asbestos) on to steelwork in a ships boiler room with NO mask and looking a bit like a snowman.
As for the meds I've reached the stage where there is a grave temptation to either stop taking all of them but know that would probably do more harm than good so keep on taking them but question the side effects.
I don't come on very often but take a peek now and again and can't believe what you have said about Keppra because I've been on it since Jan started low dose then upped to 4 x 500mg a day and only last week my neurologist has now put me on 2 x 1000mg a day 1 xmorning and 1 x night and already feel different .
My neurologist did say I would possibly have a few blips at first because of changing the dose ,at night i also take 0.5mg clonotril but been adv by neurologist to take one to work with me in case i start to feel strange and if i feel strange take 1 or even 1/2 of that tablet which is the minimum dose anyway of clonotril.
I've read a lot about this drug and they say apparently its supposed to be the best on the market compared to others as this is quite a new drug!!!!
I've spoken with my neurologist about maybe trying the generic one as where i live here in Cyprus its expensive so we are slowly trying to find the right dosage and see how its working out then maybe trying the generic Levitericetam.
I must admit when i first started taking it my moods where erratic but have claimed down compared to what they were like but still get those moments of being very inpatient especially with the job i do which can be very stressful which my neurologist has mentioned before it doesn't help me....
So glad i popped in today and read this article because at times feel like I've been going crazy and even mentioned this to my neurologist who even asked me if i have felt or had any suicidal thoughts(which i haven't and said noooooooo to him ) the one thing it has done is change my appetite which is better for me than putting weight on like a lot of epilepsy meds are known for.
Also I'm not depressed and quite clearly told my neurologist i don't like taking meds at the best of times so please don't add them as well but he did explain that Clonotril is like the cousin of valium but i only take at night to help me sleep and like i said before its only 0.5mg the lowest dose....
Also sometime i will be sent for another EEG to compare the results from before i started Keppra and to see if its showing any difference after taking the meds...
Well I hope the EEG shows an improvement. My EEG proved normal before Keppra but the symptoms of epilepsy were pretty clear and as there was a direct cause in the area associated with epilepsy there wasn't any further thought given to it really.
The brain tumour is also the reason the epilepsy is difficult to control and the reason I won't get a driving license again.
Interesting your Neuro asked about depression because after reading the guff in the Keppra pack it is also a know side effect and it shouldn't be given to patients with depression or ever had suicidal thoughts. SOmetimes I think the meds are worse thatn the condition they're given for.
mine was a brain abscess back in April 2013 then had a mastoidectomy on my right ear 2014 so both ops right side temporal area.
My first EEG Jan 2015 did show abnormal activity in that brain of mine along with previous symptoms diagnosed partial seizures......
I'm not suffering with depression but was told some epilepsy meds can also be used along with some anti depressents ....
It's interesting when you start reading about side effects and like you say taking meds can be worse than the condition they are given for.
I felt better after having my craniotomy than I do taking meds now even though I was having strange feelings then and was getting peed off being told its anxiety which of course looking back it would be after going through all that.
Eventually after seeing a few different dr's and inc my outpatient neuro Dr I was referred to see a neurologist....
Thnak goodness that you are at least getting some answers now. They might not be what you wanted to hear but at least you can give a huge chunk of your imagination a rest.
Hoping that news from the team is positive and a change of meds gives the moods and paranoia attacks a real boost.
Take time to digest all aspects of the news and lots of love to you and the wife.
Thank you. Yes finally answers, not the best I guess but far more definative thatn before so now have something to target my efforts on.
Sometimes I think they try to be overprotective or tell little in case they're wrong and you sue.
It's my wife I feel sorriest for because she has to put up with me and my moods and paranoia on a daily basis and her efforts are rarely noted by people who keep asking and worrying about how I am and give no acknowledgement to poor old Pam who, I think, has the hardest time.
I can't imagine how you feel for not being able to drive again, when I had my accident in May this year I wasnt allowed to drive for 8 weeks and that was bad enough. I have a friend who has mild epilepsy and the drugs he's on can make him really moody and down but Iv suggested he goes back to his doctor for a re think. He says this all they can do as the side effects of the drugs are mood swings.
I don't know enough about it so can't agree with him.
The driving is a devastating blow as is the loss of so much else I used to do.
As for your friend he's shouldn't hesitate to question the meds. The only reason I questioned them was because the councellor that I'm seeing to help with my moods etc. actually has epillepsy and immediately recognised what I was feeling and experiencing from her own experience in the early days before hers was controlled by changing to different meds.
I hope and wish for a continued recovery to full fittness or as close as practical for you.
Its nice to hear that you are accepting not being able to drive again! Like you say, it's nice to have news, and some boundaries.
Good luck with you future visits to your neurosurgical team. Who knows, maybe one day you WILL drive again. They are continually coming up with new medications, and operations.
Thank you for your support and yes they do keep coming up with new techniques and if I get offered any, even if it's a trial of a new med or technique I will grab it with both hands.
I am so desperate to get back at least part of what I've lost. I keep getting told that I should be grateful I have what I do but that's so hard, as I guess many of us on here find.
I am no longer able to perform on the drums with the several bands I was with, I've tried getting my guitar out and struggle to cope with even simple stuff I used to find easy. Playing a song more than once and all the words, chord sequenses go out the window into a hash. Walking any distance or concentrating the mind for more than a few minutes is so tiring people don't beleive me.
However fingers crossed and time to start trying to wear out my bus pass.
Well, it's a mixed bag but better than an empty one !
I never learned to drive so never had to give it up - shanks's pony or 'the wheels on the bus go round and round ' for me ! An occasional train or tram but balance is hard work if no seats available. I am not confident on buses either - I worry that I will go blankety blank on stating destination or have a hard time judging where I am and getting off at the right stop ! I have to confess I have never been on a bus alone since illness, although last week I did get on at a stop further up by myself to meet my partner who was already on the bus and we carried on up town. Stood in bus shelter singing about going to the ring road ( my required destination ) so I wouldn't forget !
It is unfortunate that the medications taken for problems can sometimes cause a further issue. I think having your E managed by the specialist team is a wise move, despite the travel. I refused meds on the grounds of side effects and am lucky that they could possibly be beneficial but are not essential for me. I wasn't willing to mess with the status quo of how my spasticity symptoms had settled and possibly end up taking time off work as a result ( I had only just completed 6 months back without sickness, after being 'on a warning ' )
Anti spastics can help with the stiffness but can also amplify the weakness and general fatigue . I know how to work with my current level and would struggle if it caused these additional probs. I feel that keeping active, within my limits, is the best way to keep things reasonably stretched and functional : )
Just a thought- I found certain foods made it worse for me with my concentration and frontal lobe activity. I love cooked breakfasts and bacon and anything fried really but it was having an effect on my thinking and actions. Im pretty healthy with MX and work but it was strongly having an effect on my brain. Stopped it all now no cooked breakfasts or even a fried egg and feel so much better. I wasn't having it all the time but when I did i felt awful just could concentrate even after fish and chips.
For the first year I needed food every few hours or I ground to a halt. I seem to have got over that, not what I was where I'd get distracted by work and not eat over a 24hr period or more, at times upto 80hrs I don't last 8hrs now!
Thanks for the ideas on diet. As yet haven't found any links to diet but my wife takes a firm hand to that tiller... healthy is her way.. apart from the odd 'treat', pref a full english or cheeseburger and despite the odd indulgence must be getting something right lost just over a stone now and holding steady.
I really miss bacon and fried eggs but feel much better for it brain wise. Must be the oil. I only used to have them on a Friday or Saturday and it gave my a terrible head ache last time so not eating it at all now. Im sure certain foods have a distinct effect on brain recovery and function.
I've reared my brain on here again and must agree I've often wondered about what foods I was eating so changed my diet as well and done quite a lot research into this and have found at times it does make a difference and of course the odd indulgence now and again doesn't hurt
Also at the moment my dosage has changed from 4 x 500mg keppra to 2x 1000mg a day and have noticed a better difference already after 2 weeks even though I still get the odd weird feelings whatever that is???
So I'm crossing my fingers,legs and anything else I can cross.....lol
So its well worth looking into diet change for sure I used to be a smoker and liked a few drinks on nights out before all this happened now I don't smoke and rarely touch alcohol even though joking I say to friends I was more healthy then!!!!! but I don't really think so
Touch alchahol? No way goes into glass and straight down the throat no touching involved... well it used to when I was 18 (thats what I told the bar staff).
Smoking 50 a day then got married no more smoking just a mortgage, two children, a dog, tropical fish.... no money left for smoke
When I could drive I couldn't drink cause I was always nominated driver now I CAN'T drive I still can't drink because of meds and health
Still the sun is out and.... Still enjoy the day every day.
Hi Sporan, that sounds like a good positive for you (minus distance involved)
is there no medical transport assistance available, or a local charity that might help out for the days necessary for your appointment? Worth a try, do you think?
sorry for the time delay in my response to this, unless I've responded before....
and yes I still feel the loss of independence in not being able to drive, it's gut wrenching having to rely on others, especially here amongst expats all getting on with their lives!
I have to admit to not checking on medical transport assistance and feel the charities mught be best deployed to those with more difficult transport problems.
The other thing is I feel so much better when my wife is with me and she wants to be there which is also useful to the consulutants for aditional observations of the troubes I have. She also gets a better feel for what she might expect from me both physically and mentaly.
Time delay is never an issue. Any comment or advice is always welcome.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
. Also confirmed that the emotional issues and severe mood swings I've suffered lately are likely to be related in part to my epilepsy medications.
Driving Assessment blues
Dvla driving assessment tomorrow 
Hello, I'm new and this is 1st post - Revoked Driving Licence
