Hi all. I was here a few months ago... when I thought everything was going well. I'd gone back to work, my medication had been reduced, in fact I was able to come off it altogether and life seemed to be almost normal. I saw my neuro consultant & he said I could send all the info to the DVLA as it had been 3 months without seizures, and by the time they'd have assessed all the info, another 3 months would be over and I'd be able to drive again. Well you can guess what happened the day after, can't you... I had an 8-minute seizure and ended up in A&E and back on the medication. That scrapped my plans of being able to drive again this summer. And then, last week, I had another seizure, this time luckily much shorter at only 90 seconds, but A&E it was and now looking like an increased dosage of meds. Driving is now so far in the distance that it's pointless even saying it, my partner doesn't want me to be alone at any point which makes me feel like I'm being stalked, and I'm now constantly worried about when the next seizure will be and whether I'm actually recovering or not. Making any kind of plans for work or holidays or even a day trip seems impossible, and being stuck in this life is driving me crazy. Did anyone else seem to be doing well and then have it go wrong? Is anyone else having occasional, irregular seizures? Anyone else on Keppra? How long did you take it for, and were you able to carry on fairly normally while on it?
Thats sad. A really good and seemingly full recovery then shattered.
I dont have seizures and I dont take Keppra. What I share is the huge disapointment of thinking recovery is going well and then finding it is not.
My recovery didnt have a major incident, but I do have lots of set backs and they do not get any easier to cope with. I thought I would be toughened by the first two years of recovery, but quite the reverse.
I can drive and I do drive. responsibly, because I know my ability rapidly declines in about 30 or 40 minutes. But that 30 minutes allows great independence.
From day one I have insisted my other half takes time away from me. She loves shopping and coffee mornings etc so I try to get her to go out every day. Which she likes. Yes she wants me to drive her to places like pre stroke, but I cant do that safely. My other half also goes away for four days each month, making the 80 mile trip which I can not yet make. She goes by train.
That gives me independence. It allows me to clear my head. And I think it keeps other half sane.
As long as you and yours have mobile phones to hand then surely you can gradually build parts of your lives independently.
It is so hard to fully accept the change to our lives. Step one was to openly state and admit that things have changed. Then the harder step 2 is creating your life to fit with your disability. So hard. And others just do not get it. Only another SS understands.
You have to regroup and get the best recovery you can. Things do get better, evn though we cant see the improvement
A fellow patient on my rehab ward had seizures, but when I saw him some months later these had stopped. He could not drive either and his wife would not let him go anywhere alone.
As Colin says, we all have setbacks. I did not have seizures, but I had down moods, occasional falls and was sometimes very clumsy with my hands. I had expected progress to be faster, but it was much slower than I thought. The keast failure tends to make one depressed, but you just have to carry on and chip away. Things get better, but may not get you back to the old you. You have to be content with what you can do, not think about what you used to do. Three years on and I am not allowed to go anywhere alone, even if I suggest I go by taxi.
As Colin says, this is where mobile phones come into their own. I am allowed a short morningvwalk alone, provided I have my phone. I hope things improve for you.
Thank you Colin. Yes, the acceptance is the hardest thing. Being a person who never had to accept someone else's decisions or let someone else control my life until now, has made everything difficult and depressing. I don't even like this version of myself and that's tough... I feel like the Real Me is on a holiday somewhere else and hasn't decided when she's coming back yet. I need something else to occupy my mind with... but even finding that is hard, when you live somewhere rural like I do, and I can't get out to anywhere. Any tips on how to become more patient and calm about this, rather than being the grumpy cow I am at the moment?
Perhpas you need to get calmer. Counselling or Relax or tai chi or acunpture or yoga and so on. I had counselling in the arly days and it was very very helpful. I now go to free ralx grooup sessions at my village church. The village hall has tai chi. One little help that I use is a tinnitus relaxer. Its just a little box that plays white noise overlaid by rain or woodland or waves etc. It is effective for me.
You give a lovely thought that the real you is on holiday. Regret that its not the case. The old you does not return. ( i assume you have infarct damage.)
My bestist tip is that you smile. Lots of times each day. If you cant manage a real smile then a false, forced or fake smile will work. There is apparently a medical reason why a smile works. I just know it works for me. Do give it a try.
In the early months I was very keen to note what I could do rather than what I could not.
An early achievement was to step outside. Then a yard or two down the garden. Then to the post box. This became walking a mile. Then driving a few miles. So I was no longer trapped indoors.
I made a big effort to find another stroke survivor to talk to, but this never did happen.
Sources of info include the library, the doctors reception and above all the church. Village churches are a treasure trove of help and guidance.
So what can you do ? I could watch TV. I could use my PC. That was a big starter. Next came my lovely cat, who adopted me. He doesnt mind the stroke damage, he loves me for what I am (ok mainly a source of food) .
Later I have waited on tables, made tea and coffee for local voluntary groups. Its not the old me (I am an FCA) but its the new me and I am doing something useful. I also tend a very long garden, a battle that I am not winning, but at least I am participating.
And of course your local stroke group. Perhaps that should be your starting point.
I’m not allowed to drive either but how does one go out shopping one gets an electric scooter ? I have a basket At the of mine front and most shops are very accommodating these scooters themselves are pretty quick and I go to the park in mine with my dogs where as before I would just sit at home glaring out the window at my lovely car I’m just trying to make light of the situation but it’s a different world we live in now people out and about are people actually very friendly and actually helpful and speaking to other scooter owners it’s quite socialising for them I really feel for you regarding your seizures must be terrifying for you however we all have our own worries mine like most is it going to happen again if so will it be worse I just get out on my scooter and go for a blast down thepark getting some fresh air or going down the shops spending money I haven’t got
good luck all life is a learning curve teaches a lot about ourselves we have to forget the old us and now learn the knew us find something knew to be good at. Keep busy keep positive try knew things
your capable of chose something you know you can do so you don’t feel bad if you can’t. Go to a group meeting. Write a book Do an art class. Painting etc, pottery class, I don’t know something different that you could do with your good side. Don’t think of how you were or if only I knew or if I just did whatever back when.
thats me done one good luck everyone
Nice words Tx. Scooters are very useful. I quite envy those on a scooter/wheelchair in the supermarket. And I always speak to the person on a scooter or wheelchair. So many speak only to the person accompanying them.
I am however so thankful that when I come out the supermarket I get in my car and drive home. I can drive safely for 30 to 45 minutes.
Yesterday I had a very special day. My normal activity is limited to 45 minutes then I need a half hour rest. This does limit activity. But out the blue, dont know why, but I did weeding and planting for six hours and no downside. What a revelation. Much reduced SF. I am 41 months post stroke so to anyone reading, recovery can come any time. I am now going to try and fathom how o replicate yesterdays activity.
And the sun is shining
I continue my experiments with finding the limits of my fatigue experience.
this week I had to take the car to a specialist workshop for another adaptation to the handbrake. they couldn't do it at my home so I had to take it out. it was quite a challenge and the longest drive I have done so far, an hour each way. I was willing to try partly because I was accompanied by my wife, who doesn't drive but could help if I got in a mess. so we had a lovely day out in a workshop reception room! but the test for me was could I manage this, because if I can it means that I might be able to take my wife for a few days away in the summer. I coped ok motorway driving was challenging but I did it all safely. fatigue has been continuous since but at a manageable low level. I am still recovering from the unpleasant experience of lozing my job and occasionally have a rre run of the emotional upset that caused. it is the emotional stress more than anything that seems to trigger fatigue. I suppose it is just a lot for an injured brain to handle. I am trying to find ways to do gardening independently but at the moment I need a lot of help to get things setup for me as I am not very mobile and still have no activity in my left hand. this has been causing much frustration recently and I have noticed that I am getting restless, which perhaps is no bad thing. it may be the spur for some renewed focus on recovery work. on fatigue, I have discovered that I can do quite a bit if I accept a certain level of tiredness feeling as normal.this sounds easier than it is. I have had an occasional day when the fatigue haze clears, but mostly there is a constant background weariness that I have to push myself through to get going. I don't like it but I can live with it. on days when fatigue is heavier I don't push and I know the limits now when I will not attempt to drive. we are reassred that we might be able to get a short holiday soon. haven't been away for three years. I promised my wife wed go somewhere more attractive than a workshop reception room. she teased me greatly on our exciting day out together!
great to hear what you have been able to do. thanks for posting.
all the best
Really pleased for you Colin - especially to have such an active day without any 'payback!!' Long may it last - ?
I’m rediscovering the forum so plse forgive my tardy Response. I look after my brother who had a massive stroke over 4 yrs ago. After one year he had his first big seizure... I didn’t even know that lots of stroke people get epilepsy.he was put on Epilem 500 , the he had a few little seizures so the dosage of Epilim went to 1000. For over a year he didn’t have a fit but then had a big one last March. They gave him 1000 Keppra and he started getting delirious. We had to go to 3 different docs to finally have 1000 Epilim prescribed and 500 Keppra . I think it’s a lot but he hasn’t had a seizure for 18 months. The side effects of these meds can be severe - so look at the instruction sheet in the boxes. It’s a question of finding the right drug and dosage that works for you. Unfortunately my brother seems to get more tired with these Epilepsy drugs.
PS : My brother lives alone with a carer in for only 5 hours a day ... your partner will eventually accept that you can’t be under surveillance 24/24. I was so paranoid at first that I slept at the foot of my brothers bed, or rather I lay down and listened to his every breath!
I had a subarachnoid hemorrhage in April and was put on Keppra, I take 1morning & night 1000mg, luckily I've had no side effects.
Hey you how’s it going for you these days, keeping busy and I hope your driving is still good, I’m trying to pluck up the courage and drive coz I really do miss it, it’s a bit faster than my scooter, take care and God Bless ?✝️
Hi hi everyone. Could do with some advice please... I suffered a stroke about 18months ago. Rehab was going well for the first few months then about six months after I had a seizure out of the blue. Doctors prescribed keppra- I was on this for a few months but, due to severe fatigue asked to come off it. The neurologist perscribed lamotrigine which I've been on ever since. Had about 4/5 seizures whilst on it and each time the neurologist has increased the dose. I'm now at 550mg, so very near the 600mg daily limit. Obviously I hope that will be the end of it but I'm not sure. I worry 24/7 I'm going to have another seizure and I constantly feel 'jittery' - I'm not sure if this is psychological or if the drug simply isn't for me - it feels more physical than just 'worrying'. The doctor suggests switching to another medication is problematic and, as I'm so afraid of having another one, I'm not sure if just to go up to 600mg and wait, or if there is other medication which I can switch to easily that will help. Any comments on advice greatly appreciated.
I had two seizures after my stroke in 20017. They were a year apart. I have been put on Epilim. I take three tablets twice a day. It is supposed to be a good one for epilepsy and the neurologist was going to sign me off. I asked to be rung after another year. I can take it because I am over child bearing age which wouldn't be an issue for you. I have no idea if it would be appropriate for you but you could ask about it. Best wishes, Hilary
I'm no medical expert but your experiences are similar to mine in my first few years after my stroke - I was put on Epilim at first which made me hungry all of the time and didn't control my Grand Mal Seizures. I was working full time so asked if my Warfarin medication could be changed to the newer Rivaroxaban, which does not require regular blood tests. Epilim interacts with Rivaroxaban, so I was transitioned to Keppra and have been seizure free for nearly eight years now. I had less fatigue with Keppra than Epilim, so I guess we all respond to drugs differently.
I can certainly understand your worrying about having another seizure - they are pretty horrible but I'm sure the real medical experts will find the best solution for you eventually. Until then, stay safe - I walked around with a cycling Helmet on while I was on Epilim. I did get odd looks but it's better to look silly than have a major head injury, I thought.
Take care now,
Dear Damian, Sorry to hear Epilim didn't work for you. I have been OK on it. I have been scared of having further seizures. My remedy is to only go out with my husband and a mobile phone in my bag. The neurologist who I had a phone appointment with was going to sign me off. I said could he ring me in a year. Best wishes Hilary
Thanks Damian, appreciate the advice. Stay safe. Mike
Many thanks Hilary. Stay safe and thanks again. Mike