Late onset epilepsy?

[ecossaise]

Are there any other "golden oldies" out there who have developed epilepsy later on in life? My seizures began 8 years ago when I was 56 years old - completely out of the blue. I have spoken to people who have or have had childhood epilepsy but not to any older sufferers. It would be very interesting and emotional supportive to hear of their experiences.

[Spikeysusie]

Hi I wasn't exactly a golden oldie when I started having seizures about 15 years ago, but I was in my mid twenties so it really did come out of the blue, at first I felt quite angry about having epilepsy especially as I was forced to give up driving for a year. But as time has gone by I have come to accept it and am very lucky in that it is easily controlled with minimal medication, my only bug bear being that it makes it very hard to lose weight!

[ecossaise]

Thanks Spikeysusie for replying to my post. Yes, you are certainly a LOT younger than I am !!!! However, i understand what you mean because yours is not childhood epilepsy which many of the others on the forum seem to be involved in, so it is good to chat to you. I also had to give up driving for several years as it took a long time to get my seizures under control and I found that VERY hard to take - I have been driving since I was 17 and I felt my independence had been taken away. As I have now been basically seizure free for well over a year now, I am driving again. I feel a mixture of angry and upset at what epilepsy has done to my life - mainly my massive memory loss but also like you, trying to control my weight is even harder than before. My medication has also caused me to have very poor co-ordination and balance. Have you had any memory problems?

[chimaribel]

I was diagnosed at 34. Like ecossaise, I missed driving at first, but was able to return to driving after bneing seizure free for a year. Since I moved to the UK, getting licensed was such a hassle that I take the bus, cycle, run or walk everywhere. I also had the complex partial seizures return, have had two cycling accidents in traffic, and have had my dose of Topiramate increased so can no longer drive. I am returning to the States soon and hope to be able to return to driving again once I am seizure-free for a year, although the thought does scare me a bit. More than anything, I miss the sense of freedom it brought me since I enjoy cross-country driving.

I also have had difficulty concentrating, focusing, find that my depth perception is not what it used to be and my memory..oy. But I prefer those side-effects to the seizures and aura so I am thankful in many ways.

[AMH76]

Hi, sorry I'm not a golden oldie either! I had my first seizure 12 years ago at 24 and the medication worked for 5 years, which meant after a hard first year (and probably the longest year of my life as well!!) of not driving I could happily get back in the car.

Then after 5 years the Neurologist decided to take me off the meds to see if they had cured me! and no they hadn't. I was put back on them and they didn't work!!! So for the past 7 years I have been having seizures every week. Nothing has worked and the medical team are saying the only option for me really now is to have the operation next year, and I have never been so scared, just at the thought of it.

I have major difficulty concentrating and memory as well

[ecossaise]

Chimbaribel and Horsy24 - thanks a lot for your replies - I have had to be away for the last week and have just got home to my keyboard a couple of hours ago!! I'll reply asap.

[ecossaise]

Hello again to everyone - I am very sorry that I didn't reply when I said I did - very genuinely, I completely forgot all about the existence of the forum and everything connected to it - not an unusual situation for me as we have been talking about. This kind of thing happens to me all too often!!!!!! I only remembered about it because I had an alert in my own inbox about a post this morning!!

Anyhow, to Chimbarel - I have the same kind of "side effects" as you do - I have very poor spatial awareness - I misjudge distances when I am moving around, I stumble and fall frequently and my concentration is poor. I have also just recently begun to realise that my ability to calculate numerical things is now very very poor. I do a lot of patchwork and I used to calculate sizes, measurements etc fairly effortlessly, mentally. Now, even writing it down, I am frequently completely unable to do the arithmetic - I stand there looking at the numbers and just can't work out how to do "the sums". It is very frustrating - and actually quite frightening. I am still driving as I truly don't believe that I am having any problems with the abilities required to be a safe driver. My husband also says that he sees absolutely no problem with my driving skills - that's a pretty miraculous statement coming from him!!!!!!!!

Horsy24 - I can understand how frightening it must be to be told your only option is surgery. I am guessing that they really have tried every possibility in terms of medication? I say this because they medics had basically given up on controlling my seizures with medication and had almost got to the stage of telling me outright that I was just going to have ot "live" with them. then my GP suggested asking for an appointment with another consultant she knew and because he took the time to investigate in real depth exactly what form my epilepsy took, he got everything under control. He put me on drugs that the previous consultant had tried but he built them up little by little by little until I was on a dose EIGHT times higher (but still within the limits of the recommended maximum) -now I no longer have massive seizure up to 4 times a week!! Perhaps there is still a solution out there for you that doesn't involve surgery.

[annaje]

Hi

I have just had my second seizure at 67. Both in the last 3 months. I had Chemo up until May but have been ok up until October, anyone else had seizures following chemo?.

[ecossaise]

Hi Annaje - sorry to hear about you seizures. Having had mine arriving "out of the blue" so to speak, I know how frightening it is. Mine certainly don't involve any kind of Chemo etc but I ma just wondering if there is any possibility that they have been brought on by what I would imagine has been a very stressful experience for you with being ill enough to need chemo treatment. My specialist believes quite strongly that mine may have been triggered by a very stressful episode in my life so it is possible that yours could have similar origins. Have you discussed this possibility with you specialist?

[annaje in reply to ecossaise]

Hi

My Neurologist thought it may just be a one off, I have not been able to see him again yet but am hoping to in January. I will certainly discuss this at the appointment. As yet my doctor does not want to give me any medication, he says go back to neurologist.

Getting appointments are not that easy in UK unless you pay. Of course until I get medication to control them I can not apply for my driving licence back.

I did think I was just about getting back to a normal life when the seizures came out of the blue.

[ecossaise]

Hi Annaje - I can understand your frustration about it all. I actually had most of my epilepsy problems when I was back in Britain for a while - and ended up staying longer while trying to get it under control - I speak reasonable French but the idea of trying to sort out something as frightening and complicated as my seizures was terrifying!!!!

Regarding your driving licence - I really understand that too. I may be wrong but I believe that if you have had a single seizure, they will give you back your licence 6 months after it has occurred but if you have had any more than that, then you have to be seizure free for 12 months - to the day!!! I actually lost mine for almost 4 years as they couldn't get mine under control but yours don't sound nearly as bad as mine were. It is also more than possible that they are not actually epileptic in origin - I have learned throughout all this how incredibly complex a subject this is!!

The one thing I will share with you is my honest belief that, because resources are under enormous pressure in the NHS, sometimes the only way to get quicker help is if you get very "firm" about it and make polite but very definite requests for speedier help!!!!!!! It is also worth remembering that not all neurologists are epilepsy "specialists" - that doesn't in any way make them "bad" neurologists, it just means that epilepsy is not their specific field of expertise. I know that it is very frightening as well when you don't really know what it is you are dealing with. Once you know, even although epilepsy can never be "good" news, with an actual diagnosis, you can start to move forward!!

If chatting to me on the forum is of any help at all, please don't hesitate - I understand so well what you must be going through and, unlike some illnesses, with seizures, it is quite difficult to find other people with the same problems and you can feel very alone.

[annaje in reply to ecossaise]

hello

I hope you have had a nice Christmas day. After my set back in the week I have had a lovely day with my children and grandchildren, they were all very helpful which made for a very nice day,

I can no longer hope it was a one off and have to look at further investigation to try to find a cause . I have some heart investigation coming up in January but now everything seems to be in slow motion.

I have holidays planned and outings to shows, but it is a worry whether I should go because of putting the responsibility of me onto other people whilst I am out and about. Both times I have been taken to hospital and would like to know if this is neccessary, since they do not find any cause.

Oh well I guess I will just have to be patient and see what develops.

I do have a very good husband who keeps a good eye on me but by this age (late 60s) is also developing problems. Getting older is not easy, although we were both fine golfing and bowling up until 18 months ago.

Sorry to go on but it is nice to be able to let it all out without burdening those nearest and dearest.

[ecossaise in reply to annaje]

Hi again - I can't reply properly tonight - I don't have the peace and quiet to do it justice! I do promise however to try to find the time tomorrow to write to you. I can identify with EVERY word you say -and so very few people can! - so maybe we can do a bit of "sharing". Till asap.

Margaret

[annaje in reply to ecossaise]

Hi Margaret

I hope you are alright and just having a good time over the holidays,

'

Beth

[ecossaise in reply to annaje]

Hi Beth,

I have just written a reply to your message above and sent it but it seems to have disappeared!!! I was explaining that I had just arrived back home from a Christmas visit to my son and that my laptop battery went flat on Thursday and I had forgotten to take my charger with me!!! I wrote more than that but won't repeat ti all!! i WILL write over the next 2 days, I promise faithfully!!!

Thank you for your concern and my apologies again for all the delays.

Margaret

[annaje in reply to ecossaise]

Pleased to hear you are ok and just celebrating the holiday season.

I have been fine since last seizure and got appointment in January for neurologist,

I have been advised by a friend to visit dentist as her husband had 3 unexplained seizures and after some dental treatment had no re-occurrence

best wishes Beth

[ecossaise]

Hi Beth - that would be great if that were the reason - let's keep our fingers crossed that you have that kind of a result. Also. you'll have the chance to ask lots of questions when you have your appointment with the neurologist. Fingers crossed for a good outcome from one or other of these visits.

Cheers

Margaret

[annaje in reply to ecossaise]

Hi

No outcome from Dentist and still waiting for results from heart tests, Nuerologist has put me on Lamotregine a low dose to be built up over a month, apart from a clearer head no other effects after 5 days. Hope you are well and not too much snow in your area. Just a quick question Is it safe to fly and what distance would you go?

Beth

[ecossaise]

Hi Beth - I'm glad - in one sense!? - that the dentist is happy - but it would have been a nice easy solution if it had been that! I am on Lamotrigine as well and have been for over 3 years now - a high dose of 400mg a day - mine was built up slowly too until the level that controlled things was reached -I think I started on 50mgs?? I am very happy on this drug - it controls my seizures - which is fantastic! - and I have very very few side effects - none of them effect my daily life to any really noticable degree. I have never been told not to fly - except at the beginning when I was having the huge amount of severe seizures constantly - then I hardly left the house!!! I fly quite regularly, most recently to Kenya and back - and have had absolutely no problem at all. Of course, it would be best to double check this with your GP. One thing you MUST do is to make sure that your travel insurance covers you properly because many of the companies charge a absolute fortune for cover or won't insure you at all. If you have any problem re travel insurance - there is an insurance company recommended by Epilepsy Action(??) - it's part of Direct Line (I think??!!) but a completely separate section dedicated to epilepsy sufferers and they give you total cover with very little difference in cost. It may be, of course, that you have no problem as you haven't actually been specifically diagnosed with epilepsy itself - but I think it is worth checking out. I'm sorry that I can't remember, off the top of my head, exactly which company it is but if you need it, I can go and check in the depths of my filing cabinet!! - I think I should still have the info somewhere.

I know it is really hard not to be very worried when you really don't know what the outcome of all of this is going to be, but try your best. I'm sure that, if it is epilepsy then they will find the best way to get things under control, even if it doesn't happen immediately.

Snow has been quite deep here but it is now raining so the white stuff is vanishing as I write!

Take care

Margaret

[annaje]

Thank you . You give me hope.

[ecossaise in reply to annaje]

Keep your chin up as they say and honestly, things will get better even if it doesn't feel like it right now. I'm always happy to lend an ear when you need it. Please let me know how it is going.

Margaret

[Hidden]

Hi Ecossaise,

Regarding your epilepsy starting at the age of 56. Hormonal changes has a lot to do with epilepsy as I have found out during my 39 years with epilepsy. My epilepsy started at the age of 16 (puberty), I have had a hysterectomy and am on HRT. As oestrogen levels are changing, so does the seizure control. I am now coming up for 56 too, and would you believe , I have been seizure free for 13 months. My only answer at this stage is Menopause. Some women grow out of their epilepsy during that time and others possibly can start. Don't forget hormones play a big, big part in our bodies.

[ecossaise in reply to Hidden]

Hi Lesmal,

Thanks for taking the time to write. My specialist did look at the hormonal aspect of my seizures back at the beginning but I don't think they came to any real conclusions there! Nowadays, i don't think there are many, if any, hormones left there to have any influence!!!! I have been free from DAYTIME seizures for about 3 years now - thanks to Lamotrigine but have recently started having some occasional mild night-time ones - doctors' thoughts are that they may well be triggered by stress? My dosage has been increased - just today in fact - so hopefully this will sort this latest "hiccup" out.

[Hidden]

Glad to hear this may be sorted now with medication. Yes, stress could be a big factor too. Slow down and relax, as the saying goes. Sometimes its harder to do than everyone thinks, but hope all goes well in the near future. Keep us posted.

[ecossaise in reply to Hidden]

Thanks for that. Yes, I'm crossing my fingers very firmly as well. I'll let you all know how it goes. It certainly helps to be able to share these worries.

[ecossaise]

Hi Annaje - how are things with you? I have been a bit worried as I didn't hear back from you after my last reply to your email to me. I know how worried you are and would like to know how things are going for you?

Margaret

[Freebo]

Yes i started having seizures when in my late 40's and very lucky to be alive as had a major car crash last september due to a blackout at the wheel. I am now on medication and they appear to have stopped since then. All i can say is they are very unpleasent due to complete memory loss after and also had an uphill battle trying to impress upon the Medical Profession that there was something wrong!!

Gary

[ecossaise]

Hi Freebo - sorry for the delay in replying - for some reason, i couldn't find your post again after reading it for the first time!!! I had my license suspended for 4 years after developing my epilepsy and only got it back after being seizure free for over 12 months -due to Lamotrigine finally being found to control them. As you will see on my "Memory Loss" blog, I have massive memory loss problems both long and short term - I don't seem to be able to improve that aspect!! I also had a very long search to find a neurologist who did actually have an understanding of epilepsy. Several others were probably very good neurologists in their own fields but their appreciation of how an patient with epilepsy feels was NIL. Like you I also had several who said I didn't have epilepsy at all!!!! I don't know if you have long term memory problems as well but I certainly have no memory of having had the seizures and used to be "out of it" for up to 7 hours after an "episode". I am also absolutely exhausted for about 48 hours after any kind of seizure.

[SandyH]

Hi I got epilepsy in 2005, I'm 50 next month. I found out I had a brain tumour on my left temporal lobe!!! I can't have it fully removed its too near my brain stem. Had brain surgery twice, last one was December 2012, and to be honest it hasn't helped. My epilepsy is drug resistant and over the past 2 years have a secondary epilepsy, Tonic Clonic which I have in my sleep...when its over the pain wakes me up, the other one is Complex Partial, which come in clusters, so all in all I can have around 30-35 seizures a month. They would like to do more surgery but they would have to take a large amount of my left hippocampus away which is where your short term memory is, so once that's gone I won't have the memory. I had a memory test this week to see how much I have lost, I definitely know I've lost some. I'm not letting them do anymore surgery I think enough is enough.

[Clarence11]

I have read all the stories and it is heart breaking to hear what everyone goes through. I was diagnosed in 1973 with Epilepsy(my dad died in 1972). The doctors then did not know enough about it and there were no scanners. They put me on Phenytoin(Epanutin) 300 mg a day. I stayed on that, and had only two more fits after that apart from feeling "weird" sometimes if I forgot to take a capsule and the dose had gone down so my doctor told me to take all three (300 mg) at once at night as they were slow releasing. So I stayed on that drug and I am now 65. Now I have really bad pain in my feet and legs and although I am still having tests to see if it is pinched nerve, it seems the neurologist thinks it is an effect from being on Phenytoin all those years has effected the nerves, which I have found from the internet can happen. I was told by a doctor many years ago that it may be an idea to come off the drug but he did not say why, and as I was fully controlled I decided to stay on it. I am still hoping it is a pinched nerve in my back, but if it is Polyneuropathy then it is something I will have to deal with.

In my area there is a course going(I think it is supposed to be Nationwide) which my surgery put me in touch with-EPPC CIC(Expert Patients Programme-Community Interest Company). It is a course for people with long term illnesses. It has helped me a lot and down here it is run by two ladies who themselves have long term health problems. If you get a chance to go on this course it is well worth it.

Best wishes to you all and I will keep reading the forum.

[riverboat]

I was in my late thirties when my Epilepsy started and it caused great problems as I had 5 children and was married and of course I had to stop driving which meant someone else had to do the school run. My husband couldn't cope so we divorced and The judge said as I had epilepsy I was not fit enough to have the children, 17, twins at 16yrs, 12yrs and 11yrs so i lost everything. No-one helped. Even now I have the epilepsy under control with medication there is a time when I have a feeling and I think, OH no, I'm having a sz, and it the feeling goes away. Only when I am under stress.

[Dragon14 in reply to riverboat]

5 years ago I was in the post office and out of nowhere I remember feeling strange and I ran towards the counter that is the last I remember I had 4 or 5 minute episode and cant remember anything for about 4 hours. woke up in the hospital. We never found out why I had many testings done and a second opinion. I was 65 had never ev en fainted in my life. I was put on 750mg of generic Keppra 2 times per day. They claimed that loads of people have one time seizures in their life. I had to take the medication because I am on a b lood thinner for life and could get hurt.

Five years later November the same time of year another seizure at home where I turned blue, hit my head and was behaving angry again. I am lucky to be alive.

woke up in hospital not remembering anything again!! I am now on 3,000 mg of Levetiracetam 750 mg tab I take 2 am and 2 pm the fear factor is better now as I am alone a lot! I wear an Alert 1 necklace around my neck and if I fall it alerts the emergency, ambulance etc. I was not able to push. a button so we changed to the if I fall one

Live life xx be happy