Feeling alone and trapped:-( - Epilepsy Research UK

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Feeling alone and trapped:-(

MR75
MR75

I just want to see if anyone feels like me... I’m 44 year old man, who out of nowhere suffered a full on tonic-clonic seizure and was admitted to hospital. Cutting the timeline short, after a diagnosis period of 9 months and numerous test I was told it was ‘most likely epilepsy’ and started on Zonisamide to control absence seizures. All seemed well until about 10/12 months then the seizures started again so I began a 6 month period of coming off Zonisamide and to start taking Lamotrigine. Here I am again another year on and the seizures have started again. I’m still on Lamotrigine but now have a top up with clobazam. I haven’t been able to drive for 3 years and recently suffered another absence meaning I’m ‘reset’ and have to start my year again before being able to reapply for my licence :-(

I feel trapped because of having to now work from home, not being able to drive (and I’m a petrol head with cars a big part of my life) giving up rugby, not being able to do things with my kids who are just 12 and 6. Having my wife do all the driving in between her jobs, the grocery shopping. Then there is the mood swings from aggression to crying at scenes from soaps on TV. The not being able to enjoy a drink now and again, the tiredness, all enthusiasm has disappeared along with any desire for a relationship’ with my wife. Never in my entire life have I felt this useless and a burden on my family, that I want it all to stop and to run away. I don’t feel like I’m a husband or a father anymore and I just exist.

I apologise to anyone who reads this but I just want to know I’m not alone and other people are experiencing The same/similar things to me.

18 Replies
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Whilst I have no personal experience to impart to you ( however daughter has epilepsy and is on Lamotrigine) it sounds very much like the medication is not keeping the seizures under control. I would suggest you immediately get in touch with your neurologist for an appointment. Be totally honest, as you have here, with exactly your symptoms, feelings and how it is effecting your life. They should review meds and have a plan to get you stable and able to carry out your life ( albeit maybe a “ new” lifestyle) as there is no reason why you shouldn’t be able to pretty much carry on as normal. I can only imagine the current restriction on driving would make you very deflated. Is it worth raising this with your neurologist with regard to whether an absence seizure is regarded by the DVLA as revoking your license for 12 months? I am sure you have been advised correctly but worth a query? I think your neurologist should be pro-active here at working closely with you to get you back as soon and closely as possible to your “ former” lifestyle. Try to break each issue down and work on getting back the daily achievements that you can or maybe look to achieve things even if it’s only at 80% of what you could do previously as each step forward will make you feel happy at achieving something. ( I have a little experience of this... I have Rheumatoid Arthritis and a destroyed wrist so there are tasks I can no longer do. It is so upsetting not being able to achieve like I used to, I can only plan my day and feel good about even little achievements. I break down tasks, delegate on tasks I know for sure I cannot do, feel great about doing little things and be kind to yourself each day. Don’t be afraid to ask for help. Find those task you can still do well.) also try to find some times in the day to de-stress and do things that make you happy. Reducing stress is so important with epilepsy. Would having a chat with your wife help to open up.... I think you will find she is very happy to do the “ driving around” and understands you need this support. I am sure you support her in many ways and you may have forgotten these things. Look to tomorrow being a day to achieve, plan your day but be kind to yourself. I hope your neurologist can see you quickly and provides the support and results you need.

MR75
MR75 in reply to Deniseelk

Hi Denise. Sorry for the long time to reply. I really appreciate you taking some time to share your experiences with your daughter. I’m still awaiting an appointment to see my Neuro but it’s not long now till my next review so it would seem I’m gonna have to wait until then. I like your idea of taking things in hand and try and achieve little victories each day. I’ve put myself on a diet and I’m desperate to loose some weight and give myself some self-confidence back. I going to give it another few weeks and see how things pick up. Thank you for your thoughts and suggestions. 👍🏻

Hi, sorry to hear you are going through a tough time. It is hard mentally. I can fully understand & I should imagine a lot of readers will, you are not alone.

I’m now 53yrs & have suffered from mild seizures since I was 8 yrs, was controlled for 27yrs then the last 10 yrs all change - (early start if menopause!😡)

Changed medication from old primidone to lamotrigine then topped up with Clobazam due to anxiety that didn’t work. Saw a neurologist he put me on Zonisamide + Clobazam (can’t get off this!! Have tried) Didn’t work !

He then added Keppra . So am now on 3 drugs.

My bone density has been effective so have to take a calcium/D even though I have a high calcium intake & do a lot of sport.

I haven’t been able to drive, have an electric bike 👍. Recommend sport, gym or running, yoga to help with the mind. I walk a lot & do voluntary work which is uplifting.

My neurologist did say don’t drink but I do have a glass of wine but never a lot & always lots of water as the drugs dehydrate you.

It hasn’t stop me living but it isn’t easy & I’ve had some big shit.

Take care of yourself and we are here, one thing I take vitamins B6 & B12 just one of each in the morning, which I find helps with energy & mind, my neurologist said that was fine 👍😄 X SJ

MR75
MR75 in reply to SJClaverley

Hi SJ,

Thanks for also taking the time to reply.

I does Make me feel so much better knowing I’m not the only one out there. I’ve never been be to share my thoughts n this way as I’m always a private person when it comes to personal things. I think I mentioned that I’m taking 600mg of Lamotrigine daily with a top up of frisium. I don’t know if it’s my head but I know feel like my joints are starting to ache and become painful making walking quite painful at times and my hands,

Wrists and fingers can ache quite badly too. I have looked to add extra vitamins to see what works/helps. I’ve been helping out at the rugby club to get out and have small social life where I can interact and chat with people outside my immediate family circle. Knowing there are people like you to bounce off is great to know. Thank you for sharing your thoughts and views. It really does help. I will try and post some update

Over the next few weeks and then look back to see what if any changes have occurred.

But thank you. 👍🏻

SJClaverley
SJClaverley in reply to MR75

Hi MR75

For the last 9 years my aim has been to drive again, don’t know if I’ll ever succeed. Seem to go for a year fine then blip 🥺 don’t know why maybe a bit of stress or worry! Just over 10 years ago had a big incident leaving me with psychological issues, happened out of the blue.

Take care & keep in touch. X SJ

I would highly recommend trying the ketogenic diet. I had ugly side effects from those two seizures meds (they made me feel suicidal) and in between seizures I often felt depressed and just awful. I’m a single mom and I felt like I had lost everything when I was finally diagnosed with epilepsy. The neurologists kept wanting me to try new meds and I just emotionally couldn’t do it anymore, they told me the keto only worked in hospitals ( not true) and it was only for children ( also not true)The keto has given me my life back, it’s not always easy but it’s completely worth it to me and I have reduced my seizures by over 90%. Hang in there, I always forget how exactly how awful that time in my life was, but I do remember how hard it was to not feel like myself.

MR75
MR75 in reply to Chingona

Hi Chingona. I’ve started poking into the ketogenic diet. Several people have mentioned it and not only other people with epilepsy but with many people

Supporting different medical situations. I have always been the happy and outgoing person, so to feel down and thinking ‘those’ thoughts has really gotten to me. So many people have told me to forget about the driving thing and to focus on other areas of my life, but for me it hinges so much in my life and options available to

Me in terms of finding a new job and taking some of the stresses and strains off my wife. We are all being affected as a family, something we didn’t take into account when diagnosed. I struggle to remember what my life was like before that initial seizure that started this while new chapter in my life. It was my 3rd year anniversary on Friday night/ Saturday morning so

This weekend has been especially hard to cope with. Once I can get my arse in gear I’ll try the ketogenic diet and see what improvements I experience. I’ll post up something in a few weeks and let you guys know how things. Are working out. 👍🏻

Hi Mr75,

it can really difficult to get through this if you're fairly new to epilepsy but there's many drugs to try so try and stay upbeat on the future. My wife has severe epilepsy who's epilepsy has progressed over the years despite us trying everything from medications through to various surgeries. We're a little older than you at 47 but we've never given up hope. We also have a daughter who's almost 18 and she's been brilliant with her Mum and dealing with seizures. Please get in touch if you're feeling down and i'll share our story in a bit more detail.

Take care

Paul

MR75
MR75 in reply to Paul72

Hey Hi Paul, thanks for sharing your thoughts and experiences. I think becoming Epileptic late In life at 42 has been part of the issue. Why now? I have a young family to support. I haven’t had time to understand what it was to be epileptic. It was just dropped on me. I’d not grown up with it nor had years of meds to find that happy balance to keep me seizure free. So far I’m starting my 4th year and still no sign of them completely disappearing. Whilst they are only absence seizures now, they last only for a second or so, but I just can’t be completely free of them ,try them. Im curious to know was the surgery options available?

Paul 72, thanks for the message. I’ll post more over the coming weeks and gauge if anything has improved or become worse.

Hi,Mr75,

although rare, epilepsy can start for no apparent reason in some people. I'm sorry to hear you've suffered for 4 years but still have absences they are a few drugs that can be effective in cutting or controlling these. I'm not sure if you're in the uk but if so it's a long process down the surgery route, but I can help and share what we've been through.

Hi Paul,

I think that’s what I’ve found most difficult to understand, the ‘not knowing’. I’ve been on 3 different drugs with the last 2 being used combined. I wasn’t sure if surgery was a little overkill for my epilepsy. Or if the dangers of the surgery outweighs let’s benefits.

Thank again for your advice. It is gratefully appreciated.

Matt.

I am based in the Uk, in the area around Portsmouth. I’m not

Hi Matt, there's many things to consider with surgery buddy. We're from Derby in the East Midlands, nice to meet you here.

Having epilepsy isn't easy to deal Matt but with your families support i'm sure you'll get through these "Low" times. The medication alone can make you feel crap, having been with my wife for over 28 years we've been through this together, I myself don't have epilepsy but as you probably guessed I have plenty of understanding/knowledge and met many people with the condition over the years. As a bloke too it can be extremely hard to "open" up to others whereas the ladies seem to do this much better.

Absences as i'm sure my wife (Lisa) would tell you are very quick seizures and as you quite rightly say these can last just seconds, however it's enough to have a massive impact on you. As a couple we've tried to spread awareness of Epilepsy over the years and even taken part in channel 5's Brain Hospital as Lisa was one of the few here to have DBS (Deep Brain Stimulation) solely for epilepsy.

The feeling of being trapped is an understatement with this condition, but I think you're a strong guy and by asking for support here or on Epilepsy Actions Forum4e or Facebook you'll never be short of friendship and support.

It can just be as hard for your partner and other family members but always remember this isn't your fault and they will love you very much despite the uncertainly.

Over 65% of those with epilepsy will become controlled on just medications but the tricky bit will be getting the right medication to suit you with the least number of side-effects. The side effects can be horrid including double vision, headaches, dizziness, drowsy, moody along with anger and emotions even sex drive is effected, but tweaks to meds might solve many of these.

There's no cure for Epilepsy but the meds are designed to control the abnormal electrical activity and you'll probably know from an EEG there's peaks and troughs to this activity and the idea is for the meds to "flatline" these, you really must be careful if you drink or smoke and it can have an effect how medication breaks down in your system, a couple of beers would usually be fine for most people.

Is this helping?

Paul

MR75
MR75 in reply to Paul72

Paul.. I can’t convey how much this is helping. Just someone else knowing what it feels like or understands is comforting. Everything you typed I can put a tick against it. To help myself, I’m losing weight, I’d stop drinking alcohol 3 years ago once I got my confirmed diagnosis, so I’m doing all that I think I should be. I’ve tried to find a path in life that is less stressful but I’m trapped in job that is just that, but as the major household income is my wage, quitting my job right now isn’t an option. Whilst my wife has been my rock. We have 2 wonderful kids, but my behaviour is making our family life a misery at times., which in turn makes

Me feel so bad, that as a 44 year old man, I go find a quiet space away from anyone and cry. As hard as we are trying to keep everything together, at the same time it seems to be pushing us further apart. I feel like I’m in a ‘house share’. All this because of a brain condition and the array of drugs that are trying to treat it. I work from home which is both a blessing and curse. Blessing as not being a driver right now, I’m not struggling to get myself to/from an office but in the other hand I’m isolating myself because I’m in a house with no one else and no social Interaction. Not helpful when you already feel emotional and a burden.

I hope our exchange in here will be read by others and they will realise like

Me, they are not alone and that there are some great peoplE like you always ready to listen and be that friendly ear that many of do not have.

Matt.

Paul72
Paul72 in reply to MR75

I'm sure you are an amazing Dad and husband, life can be a challenge Matt no matter who you are. If you're having seizures on a regular basis you could be entitled to some support.

Crying is like a pressure relief valve and nothing to be ashamed of my friend. As I said earlier for you the medications will be doing strange things, it's NOT your fault however you MUST shout up to your epilepsy nurse/GP or Neuro if your are getting "Dark Thoughts" or the side-effects are getting too much.

Remember also with epilepsy (the abnormal electrical spikes) within your brain will be constant although the meds will be calming some of this you will feel tired maybe exhausted and drained of energy, again this isn't your fault, just part of the condition.

As you know i'm not the one with epilepsy but a carer to my wife who needs Full Time care/support but even for me I've burst into tears when things have got too much.....the stress and worry sometimes just explodes out of us, for us males it's especially hard as we try and bottle things up, that's natures way of a man trying not to show weakness. It's been good that in more recent years Mental Health is become more recognized and epilepsy can have a impact on this.

In a way as you describe the situation like a "House-share" and you being a burden...well you mustn't view things in that way, if your relationship is good with your wife and children then the love is still there mate, think about your wife maybe deep inside she's worried about her husband, look at your kids maybe they're worried about their Dad who they dearly love.

It can a rollercoaster on emotions but listen it's very early days for you and i'm sure one day you'll find that magic pill.

Although my situation is much more complex I work full time building the Aero Engines here at Derby's Rolls-Royce but while i'm on shift my wife has a Care Package set up to cover her needs, but the work doesn't stop when I get home.

That's why your Title of your topic "Trapped" rings home to me at times. However you'll find the more you talk the more confident you'll feel, fight for the best neuro's remember there's are more specialists centres on the NHS like the Epilepsy Society in Buckinghamshire, The Nation Hospital For Neurology and Neurosurgery in London or like us The Walton Centre in Liverpool. If you're getting nowhere with your local doctor don't wait years and years demand to be reffered to a specialist further afield.

Are you just having absences? don't take a bath or a shower without your wife being close by until you're on better control.

Don't push yourself too much, there is support out there and it's possible to claim PIP while working.

Matt message me if I can help any more

Paul

MR75
MR75 in reply to Paul72

The problem for me is that I’m in limbo. I’m not anywhere near severe enough to need full time or partial care. My problem is that I take these drugs and the seizures stop, then for no apparent reason they start again. As you know, the reset button gets pressed and we start the whole process again. It’s this constant highs and lows, the winning, the losing. I think it is this rollercoaster effect that is the issue. As for my absences, I might not have one for months and then I might have one or a cluster. I’d gone from Feb to Dec last year without any absences and then 2 weeks before Xmas ‘bang’. I was so close to reapplying for my licence that I even started looking at cars. I kinda knew I’d be torturing myself.

The kids are great and keep an eye on me when my wife isn’t about. They know when to call an ambulance or when just to keep an eye on me. I don’t swim anymore, no rugby, no cycling incase god forbid I have an episode and fall of my bike into traffic, drown in the pool or risk a head injury. I Only shower and never bath unless someone else is at home. And gone are the days of having privacy in the bathroom by locking the door!

Anyway..enough of me rattling on. Bless you Paul. I’ll leave you in peace for the rest of the evening. I think I had

More advice and compassion from you in 5-6 exchange of messages that I’ve had from some of my healthcare professionals since this all started.

Have a great evening Paul and I hope you and your wife and a relaxed and uneventful evening. My regards.

Paul72
Paul72 in reply to MR75

you sound a very sensible chap, you'll be ok i'm sure of it. We know all about drugs and the tolerance wearing off clobazam is a classic example of this. You keep in touch, lovely to meet you online and if its helped then that's even better.

Matt,

here's a link with useful info with regards treatment theres a link to the medication list for the uk epilepsysociety.org.uk/trea...

Hi, I am not sure how much I can help but maybe I can tell you a bit of my story. I had my first seizure at 14 but I was told that until I had a second I couldn't say or think I was "truly diagnosed"...I went through medication for almost 2 years and it was all good. Fast forward 6-7 years and I find myself struggling with severe depression without anything I could call "a reason", just feeling extremely down, extremely exhausted, no energy at all, not going out, I normally share everything with my mom and se had no idea anything happened until I came to a point that I needed help. I went to my university's psychology department I answered some test and they told me they needed to speak to my parents. The next day my mom arrived at 6am by 10 I had an appointment with a neuropsychiatrist and by 12 I was doing an EEG . Turnes out my epilepsy came back but in such small levels that it affected in a non-corporal way, no one told me that could happen, no one tells out that depression is linked to epilepsy, no one tells you what to expect from the beginning, it took me doing my thesis on this subject to finally understand everything I was feeling, the why, the expectations and how it was not my fault. Instead of seizures I was extremely distracted, feeling like "I'm here but I'm not", my feelings and reactions were "non proportional" to my experiences, I would feel overly sad for someone drinking my soda, or overly frustrated over something minimal and then feel extremely frustrated for having this reactions that made no sense.

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