Epilepsy at 45Yrs old.: Three years ago... - Epilepsy Research UK

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Epilepsy at 45Yrs old.

teddy501
teddy501

Three years ago at the age of 42 i suddenly started getting what i called 'strange turns'. The best way to describe these episodes, is dejavu, feeling of total enjoyment, strange smells and tastes, rapid heart beat that i can also hear in my left ear. Unfortunately after i have one of these turns i am totally shattered and usually fall asleep. Last year i finally got MRI scans done which showed a subarachnoid cyst on the left frontal lobe measuring 2" x 1". My Neurolgist said that this is not causing my turns which are now classed as Epilepsy. I was first put on lamotrogine but i had severe side effects, then i was put on Epilim (side effects again). I am now getting to a point where i can not take this much more. I can get up to 10 a day, worst week 20 - 22 of them. To suddenly get this at my age and from a family where nobody has epilepsy is just awful. I am at my wits end. I was once an outgoing successful business women but now i have become a recluse that is afraid to go anywhere. Can somebody please give me some advice as what else can be done besides medication as that is not working. Thank you!

22 Replies
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Hidden
Hidden

Epilepsy can start at any age and can affect anyone. Mine started at 16 and now at 55, I still have seizures. I am currently taking Carbamazapine and Phenytoin, which I have been on for years. This medication suits me and only 2/3 years after my epilepsy started, did we find the correct medication and dosages after much trial and error with other medication.

The more recluse you are, the worse you will feel. The main object of the game is to accept your epilepsy and then carry on with life on a daily basis. There is still much stigma, but be brave, be patient, have willpower and understanding to be independent. Once acceptance is granted, you will be well on your way to solving other problems concerning your epilepsy. Do not give up hope!

teddy501
teddy501 in reply to Hidden

Thank you for such wise words. I know i must be brave etc but at the moment i am so unsure of what is really wrong with me that i am having trouble moving forward. How many more years am i suppose to keep trying different medication? But like you said it did take you a few years to find the right medication maybe i have to be patient for a few more years! Thank you once again.

Hidden
Hidden

I've had epilepsy for 39 years, and only as I have got older has my epilepsy appeared to have improved. Finding the correct medication and dosages is one of trial and error, and that's where the patience comes in. Only recently did I go 15 months seizure free until a small upset which put me back where I started. You will improve as time goes on and living one day at a time is the best way to go. Remember, yesterday is gone, tomorrow is still yet to come, so live for today... There is always light at the end of the tunnel! Please feel free to visit my Page on Facebook, Epilepsy Motive Quotives - Lesley Donnelly (facebook.com/lesdonn) or befriend me at facebook.com/lesmal should you wish to chat more.

teddy501
teddy501 in reply to Hidden

39 years is such a long time and there is me moaning after nearly three!!! I will befriend you on facebook and thank you so much for your wise words.

I was diagnosed with epilepsy 5 years ago at the age of 43. I had what I described as 'funny turns' too for about 3 years before being diagnosed. The thought that these strange occurances were epilepsy never crossed my mind and I convinced myself the symptoms I was having must have been those of a brain tumour. I can't tell you the feeling of relief when I discovered they weren't. Its certainly not been the most pleasant time in my life but I'm on carbamazepine and this seems to work for me, my memory is terrible though and my consultant can't be sure if this is as a result of the epilepsy or the medication but I refuse to let it annoy me. I would recommend that you continue to go out but just make people aware that you have epilepsy. Wear a medical bracelet and carry a card with you too but try not to become reclusive because that gives you too much time on your own to dwell on it. I'm sure your consultant will get the right medication for you - hopefully very soon and you can put these hard times behind you.

Good luck for the future

Dawn

teddy501
teddy501 in reply to McAdoo

Can you elucidate your funny turns? Mine started like a dejavu feeling, sweet smell and taste, dizziness and then fatigue ( i would usually fall asleep for an hour or so after a turn). That is also a good idea on a medical bracelet and card. Thank u so much for your kind words.

McAdoo
McAdoo in reply to teddy501

They'd begin with an odd kind of feeling like something rising in my stomah almost like when you're travelling slowly up a roller coaster waiting for the stomach churning feeling when it goes over the top- I'd feel slightly sick and disorientated and as those feelings passed I'd either lose the ability to speak or say completely the wrong words which I sometimes was aware I was doing but couldn't stop or sometimes I wouldn't even know I'd said the wrong words.

I really do hope you get the right medication soon. It makes such a difference when the tablets actually work (asd mine do thank goodness).

Best wishes and feel free to contact me anytime.

Dawn :-)

I was diagnosed with epilepsy 5 years ago a month before my wedding. I was having déjvu experiences for about 2 years and thought they were panic attacks due to my job as a teacher. Then out of the blue I had a full blown seizure in my sleep and in hospital and then was diagnosed with epilepsy at the age of 28. I was a successful teacher and was signed off sick for a whole year & 4 months until they found the right medication for me. In that time people would tell me that everything would be ok & they knew lots of people with epilepsy who live a normal life. I didn't believe them. It was the loneliest time of my life. I had all my friends and family around me but I can honestly say I felt like running away and never coming back, except I was scared to be alone therefore I felt like a burden. I felt like a failure, I had lost all my independence and I honestly thought I would never teach again. I would cry and cry then feel guilty because there were people far worse than me. It took 5 different medications until they found the right one for me, I know take pregablin which is quite an expensive drug from America. A pharmacist once told me they try giving you all the cheap medications first in hope that they agree with you. You must talk to your consultant or gp about how you were feeling. I spoke to my gp who put me forward for counselling which is the best thing I've ever done and highly recommend it.

Gradually I started to go out with my family one hour at a time, alwàys wearing my identity bracelet (look online they have some beautiful ones) then eventually I went off for a short while on my own knowing my mum or husband was close by if I needed them and I built up from there. I had to start using the bus rather than drive but the first time I did that alone I was terribly nervous yet incredibly proud that I did it. Try and build things up gradually and always have your phone on you plus a drink and a snack as it's important to keep hydrated and not get hungry.

5 years on I am driving again, seizure free and working 3 days a week as a teacher, my life is on track. I've had to adapt my life and listen carefully to my body as I get tired very quickly. Sometimes I have to miss out on things but often if I plan things carefully I get to go. I am also in the middle of ivf which is making me feel poorly but that's another long story lol!!

Please try not to give up. I know it doesn't feel like it at the mo but things will improve and life will get better. Remember,speak to your consultant about medication and see if you can have some concealing. Good luck xx

teddy501
teddy501 in reply to Carley

Thank you so much for your comment. I am with the neurologist tomorrow so i will keep you posted. I just want my life to be like it was and not worry about where i can and can not go. Hopefully like you things will get better in time. xx

Hidden
Hidden

I also wear a Medic Alert bracelet and carry cards on me, which explain my medical poblem. My bracelet has been a life saver and I won't go without it. The other good thing I carry in the back of my cell phone cover, is a card giving all details for VEMA, which is our Voluntary Emergency Medical Assistance paramedics... they are wonderful people!

teddy501
teddy501 in reply to Hidden

I am going to look at these bracelets as this sounds like something i could do with. Thank you.

nicolagreves
nicolagrevesVolunteer

I referred to my seizures as 'dodgy spells' initially, before official diagnosis. I was 21 at the time, and like you felt so vulnerable and frightened to go out. So many times I 'came round' without knowing where I was or why I was there. I chose to be as honest with as many ppl as possible, simply in order to reduce any risk. I also wore a medical bracelet, which I needed more than once after a seizure when I was out in public alone. I feel a cold shiver before a fit, which I was able to recognise and let whoever I was with know.

It took 11 yrs and 5 different medications to control my seizures - but I have made it. I've now gone 25 months without any type of fit and feel incredibly lucky, and grateful for the help I've had.

Don't give up, and don't hide away - it will just make you dwell on your anxieties more :) xxx

Thank you. 11 yrs and there is me moaning after only a few!! I am so pleased that yours are under control now i just feel as though the Medics are missing something else. I really dont feel and am struggling with the concept that i am having Epileptic seizures that started when i was 43yrs old.

That must be really debilitating for you and I am so sorry. I know very little as my daughter started to have seizures only 2 yrs ago and I find it very scary, especially when she goes out on her own. I can say she is also very wary now about her safety when she is out and this does effect how you socialise. I hope you find the right treatment and get your confidence restored. Take care

teddy501
teddy501 in reply to georgi04

Your comment is so appreciated. Like you said i too worry about my safety when i go out. I used to socialise quite a bit but i dont know for the fear of having one of these 'turns'. Like i have posted above i am still trying to come to terms with Epilepsy, as i look as these as something else. Epilepsy to me is something completely different. But fingers crossed i can get this sorted. Thank you once again x

To help get your confidence restored there are epilepsy groups around the country where other people who have been in your situation meet. You will be able to chat and find how they are coping plus more information on epilepsy can be provided. Social activities and talks take place. I found this very helpful and gained my confidence to go out again. To find out more go to the Epilepsy Action website (epilepsy.org.uk). Go to "Get Involved" then into "Local branches and Groups" to find one near to you

Hope you find this useful. All the best

Thank you so much and yes I will contact this group as I think this could help me. x

bevA
bevA in reply to teddy501

Hi Teddy, I go to an Epilepsy Action Coffee and Chat group near to me which is once a month, its helpful to get together with other people who are effected by epilepsy, some of whom are carers for family who have epilepsy, but this was something that was reassuring to me to see other local people who were going out and about their normal life who had more regular seizures than myself made me think myself lucky, I only developed it after being ill with encephalitis at 45, not being able to drive is one of my biggest battles as having children that relied on me to take them to after school clubs/activities and meet up with friends during the holidays etc. I have tonic clonic seizures which I was having every 3 months like clockwork, waking up in the middle of the road not knowing where I was or in an ambulance, my medication had been Kepra which has been increased regularly, it did have some effect but I was then having strange sensations and felt like I was still going to fit ( my hearing goes funny when I'm going to have a seizure so I do get some warning) but felt exhausted after, my epilepsy nurse thought I was still have some kind of seizure activity so added another tablet lacosamide which has been effective, I've only had a couple of funny sensations but nothing like before, this has been over the course of 2 years, I'm now 9 months without one so hoping it will continue, my life has changed dramatically and I didn't want to go out or see people as I felt like a burden, it has changed my relationship with my husband and children as I feel they are my carers rather than me being theirs , it does effect your confidence but I have taken small steps like a lot of the others on here and now make use of my free bus pass, I don't go far as I like to know I can get home quickly if I don't feel good but I do have some freedom, I do get very tired so try not to plan to much on any one day, but I work part time I make people know that I may have a seizure but do not need an ambulance and just to stay with me and keep me safe, I have a card from epilepsy action that I carry in my bag that has details of who to contact and I have the same details on the front page of my mobile, please speak with others or try to find an epliepsy nurse who is far easier to talk to than my consultant, I know I can e-mail her if I need to and she comes straight back to me. Don't give up! Please feel free to contact me if you wish to chat, all the best.

bev

I know exactly how you feel! I too was diagnosed at the age of 45 having a full blown seizure one night and waking up in hospital. That was 3 1/2 years ago. I have since lost my job as a banker, have felt isolated, depressed, a burden on others, frightened and lost all of my confidence.

Sorry! I pressed send before I finished. I get confused sometimes ha! I also have chronic migraine caused by epilepsy so have to deal with coping with that too. Anyway, I took tiny steps to try to rebuild my life. firstly I had to accept that this was not going to go away and getting angry and upset would only make things worse. I got a bus pass, a medical bracelet and card and on a day when I'd had plenty of sleep , had eaten properly and was hydrated, I got on the bus into town, bought a pie and caught the next bus home! This was after 2 years of being a hermit.I haven't looked back! I'm still trying to find the right medication, have to take care of myself and have learned to laugh at what I refer to as my crazy ways. My friends are all used to me now and laugh with me when I forget what I'm doing or saying. Finding humour in a difficult situation really helps.I don't hide my condition and will warn anyone new I meet of what may happen in a very matter of fact way then move on and change the subject. I've avoided being taken to hospital on many occassions by wearing the bracelet. I have to miss out on things sometimes or leave early but it is what it is! I'm nowhere near being able to work or drive but force myself to think positive and am selling Avon to give myself a purpose. A far cry from the independant career woman I used to be. I have children too and it's important that they see me striving to conquer this. Things are getting better very slowly and they will do for you too. Good luck with moving forward. Some people find the right medication quickly and for some it takes longer. Hope you're on the right track very soon! xx

You should ask your doctor about Kepra.My daughter suffered bad side effects from both of those,and now she is using Kepra.she was free of fits for approx 6 months but has just had to but I believe that it is because she has outgrown her dosage. She gets a terrible rash from all the other meds.i hope I have helped you.

Feels and sounds like my miserable life.

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