Hello,
Do any of you have epilepsy like me that scares the Living Daylights out of me both when I am going into and when I am having an epilepsy attack?
The second part of my question is, if you do suffer either in the same way or in a similar way how have you ever been able to deal with it.
Thank you in advance for all your replies.
Richard
When I have petit mal seizures (absenses or myoclonic jerks), I am usually aware of it. It is often scary because it means I am likely to have a tonic-clonic seizure, but at least is is giving me a warning to take whatever precautions I can.
I most scary thing is that I am still concious sometimes at the beginning of a tonic-clonic seizure. I can feel my body doing things that I am not asking it to do and I cannot stop it. I can remember very vividly a time when I had a seizure, probably about 12 or 13 years ago. Before I collapsed unconcious, I felt my head rising to the right and eventually my whole body following it, so that I turned round in a circle. I couldn't control my body at all and I could hear my sister talking and eventually shouting at me as she realised something was wrong. One of the most scary experiences of my life.
Amy,
Thank you for your reply. If only we could the delete the sacredness from our epilepsy life would be easier to deal with.
Thank you and take care.
Richard
I know the feeling, I'm concious throughout all of my (tonic clinic) seizures. Thankfully in almost all of them only my left hand side is convulsing so it's not too bad.
The upside is that i recover very quickly and can hold onto things with my right arm to stop me falling to the ground (if I have one during the day) but it is still rather unsettling if I have a bad night of seizures.
I will never forget the couple of times that I forgot to take my medicine and was conscious whilst my whole body was convulsing. I truly thought I was about to die and would have given anything to have made it stop.
I sympathise with you greatly. I find it scary being alone. Fortunately I don't get tonic-clonic seizure but complex partial seizure with absence that occur with out warning and find that I've done things or moved somewhere without knowing how or why.
Memory in random, I remember turning on hot tap to wash hands and after getting back from doctor appointment found it still running (luckily the plug wasn't in the sink) so no hot water for day. Came down one morning to find the hot plate still on, again lucky because there were no pans on it and nothing close to it to catch fire.
As I don't get any aura or warning there is not a lot I can do except avoid the possible triggers as much as possible. Mine, I think, are quite common, tiredness, especially mental but combined with physical is a disaster, stress or anxiety, busy places where I know there will be stress (family gatherings-Il have family members I'd rather not be with).
After seizure severe fatigue hits in and I can just drop off to sleep with no warning.
I've made sure close family, friends and neighbours know of my problems so they look out for me as best they can and I avoid risky activities at times I'm most likely to have seizures, including family events if other factors are at play at same time.
Not an awful lot of comfort in my waffle I'm afraid but I find it helps me sometimes to realise I'm not alone with the fear of the problems.
I'm now around 3 years since diagnoses and still have about 1-2 seizure a week at minimum despite drug dose changes etc. but this is most likely because my epilepsy is being caused by an in operable but at present stable brain tumour in just the wrong place.
I can't say that the fear has completely gone and my self confidence is pretty much non-existent but I have come to accept things more if not fully.
Geoff
Hello Geoff,
Thank you for your very informative response. If only the fear could be detached from the epilepsy. Some speak of highly of cognitive behavioural therapy, but am sceptical. However nothing ventured nothing gained.
I wish you all the very best
Kind regards
Richard
Hi Richard
Thank you for your kind thoughts.
At the beginning of this year I had several sessions with a neuropsychologist assessing cognitive change, speech issues and psychological issues (apparently quite commonly caused by the defective wiring caused by brain injury) and found them to be extremely helpful in putting strategies in place to cope and deal with my problems and am in fact currently waiting for some further follow up sessions.
My advice would be that if it's offered grab it with both hands mainly because they are amazingly useful and that they are quite hard to get hold of.
Wishing you well and good progress.
Kind regards
Geoff
Many thanks,
For your kind response. It has certainly given me something to think about.
Try to keep well.
Richard
My son has tonic clonic seizures which were helped by keppra . Unfortunately someone from the Surgery changed him to Levitiracetum the generic version. He started having episodes again. It was all about cost.
I have had this changed back with the Neurologists help. It is useful to read about how Epilepsy affects you. My son is Autistic and he has learning difficulties. He cannot tell me how he feels.
Thank you
Yes, having a seizure in front of others has made others cry. It sucks big time but it is what it is. There is nothing can do about, you wish there were but there isn't. It has happened before to me.
Alas Shanomera,
I believe that you are right.
Many thanks.
I wish you well.
Richard
Make sure the people you talk to have experience with epilepsy! I had a very lousy ride being misdiagnosed with Bipolar when it was really my more subtle petite mal seizures... we had caught the big ones just not the little ones. I now have full control and am way way better. I KNOW the emotional states of people with epilepsy are not well studied or understood. Be careful... get help from someone who has experience.
Xena,
Many thanks for your words. What pleases me most of all is that you say your epilepsy is under control.
Brilliant!
Regards
Richard
I have felt the same way. It started to get better when on one attack I just gave up fighting knowing it would be over soon.
That was the first time I snapped out of an attack.
After that one I would go and lie down when the warning came
and try my best to ignore it. ( not easy to do) That was a long time ago I now have full control and believe I was making things
worst when I panicked. Hope you find this useful.
Hi Richard,
I am always conscious during a tonic clonic seizure (35 minutes long). I get no warning signal, but know as soon as I am on my cell phone if the one hand starts to stiffen. My immediate reaction is to shriek out and burst into tears, which I just cannot stop throughout the whole seizure. If able, I run for a chair or wooden bench to lie on and get support.
During the whole seizure I am conscious of voices around me, what people are saying, but unable to speak properly and gasp for breath during the course of the seizure. I always need water and often Paramedics are called in to give me oxygen. I believe the losing breath and gasping is due to the muscles in the respiratory tract contracting and relaxing during the procedure.
A massive seizure petrifies me especially when I feel I may go into status epilepticus, which so far hasn't yet happened.
I have had epilepsy now for 41 years, but must admit my seizures do frighten me!
Regards,
Les
Thank you all
It is so useful to read about your experiences. My son cannot communicate how they make him feel. It is pretty distressing to witness and hear about. The change in brand of his AEDs led to more seizures and new types of seizure. The helpful Neurologist helped me sort It out. Now no seizure for 2 weeks. It didn't save any money in the long run.
Led mal,
Thank you for your sad detailed reply. My heart really goes out to you. However some of us short of a miracle will always suffer from this horrific illness.
All we can hope and pray that scientists could find a revolutionary new way of dealing with epilepsy. Not in our cases curing it but making it bit more bearable and easier to live with.
My kind regards to you.
Take care
Richard
Hi Richard,
There's nothing to be sad about. The seizure is detailed, but it doesn't upset me after 41 years with epilepsy. Life goes on.
Yes, we all hope a cure will be found but having epilepsy has certainly made me stronger!
As my Mom said to me when my epilepsy first started at the age of 16... "Patience, time, willpower and understanding' are the main aspects to living with epilepsy. I will never forget her words.
So far, 8 months seizure free.
Regards,
Les
Lesmal,
I am very pleased to read that you have so long weekend having epilepsy. However I suffer from epilepsy the vast majority of the time, both by day and by night.
Take care
Richard
Most Welcome Visitor,
Hope you're doing well, I see this post is a month old.
How to cope? Get more help. Go to your GP, tell them about the anxiety this is causing you and get a referral. The cause could be a somewhat rational fear, or the changes made to the brain by epilepsy itself, or both. Epilepsy can cause mood disorders after all. Either way, whatever the fear whether it is seizures, spiders, or the sky falling down, it is possible to face it head on without fear, leaving a mindful balance of caution, diligence, and control.
CBT is really good. It shifts the perspective.
Hypnotherapy is great, it's like other therapies on steroids. Not sure that's on the NHS though.
Talk therapy can be good and can deal with other sources of anxiety if you felt like this before.
Ask Doc about other options.
Hope this helps!
Also, sleep well and drink water 
Good morning Dangermousie,
Thank you for caring to ask how things are going.
Epilepsy and fear are interlinked in my case so I will have to sit back and accept it. Any form of therapy known to man cannot break this link. I have sometimes wondered about hypnotherapy but again my neurologist heeds me not to do this as he says that in some cases it could be more detrimental than good.
After all that my neurologist has also increased my usage of Fycompa a anti epilepsy drug and thank the good Lord my epilepsy is better controlled.
Many thanks once again and thank you for your caring nature.
You take care.
Kind regards
Richard
I realise that this thread hasn't been active for about a year, but I just want to say thank you for asking this question, and to all of those who have replied and shared their experiences.
Earlier this year I had a particularly bad day and three convulsive seizures close together where, during the "coming around" phase I gradually became conscious before my body could move (I have no idea what was happening at that point, actually just that during one my boyfriend was slapping my face to try to bring me round faster) and I thought that I was dead for some reason.
I had also had some focal seizures during the period when I fall asleep (a wave-like feeling going through my head and body that causes anxiety).
Since that day of the multiple convulsive seizures it has taken months to feel "safe" again being alone and falling asleep, as that dozing, semi-conscious period before I would fall asleep would remind me of waking up after those seizures and bring back the sense of panic from the moments that thought that I was dead again.
I don't know if that makes any sense to other people but when you say that seizures are scary, I agree, they are. I hope that they become less scary as time goes on - good luck with yours.
Hi There,
I'm currently only under investigation for epilepsy at the moment, no confirmed diagnosis. I experience myoclonic jerks, and last year had a suspected tonic- clonic. Before the tonic-clonic I experienced what I can only describe as an intense dizziness waving through my head. Now every time I feel a bit dizzy or light headed I panic that I'm going to have a seizure and start shouting for my housemate, after the dizziness has passed I often remain quite worked up and upset because I'm so terrified of having another seizure, even though at the time of the suspected tonic-clonic I was too "out of it" to feel any pain or distress. I know this doesn't quite reflect your experience, but the only thing I've found soothing is to make "action charts" and posters that will talk my housemate through what to do if I do have a seizure. If she's not home I'll unlock the flat door so I can call for help if I need it. I'm finding it difficult not having a diagnosis right now, but learning more and more about epilepsy and triggers etc helps me feel a bit more in control.
