Having a bit of a roughy time atm with a cluster of seizures over the past two weeks,having anywhere from two to twelve seizures (mainly complex partials)a day,feeling absolutely exhausted and worn out. I try to sleep but wake up in the middle of a seizure seemingly andmy breathing is way off and at times I am aware but my body is rigid and I can't move, then after so weak . It does a mess to my memory and mood and it's like I am in a fugue state sometimes for weeks. Like the last four weeks I have been out of it and now I feel like my brain has reset and it's suddenly mid August.
I used to have this the odd time after a migraine as a kid. And more so in the last year and a half with the diagnosis of epilepsy.
Does anyone else completely spaced out and then get sudden clarity. My breathing and heart rate is still off, atm,but I feel that's my head all seized up for a day or two at least I hope.
My neurologist won't give me any credence, from day one she said anxiety, even though it's been proven without a shadow of a doubt.s till waiting for them to switch the brand of Keppra back. But it just seems like a lot rn,but I'm told to just get on and stop being anxious. I'm on the waiting list, forty seven weeks till a new neurologist. Till then I'm not sure what to do.
Thanks for reading this post. I'm sure many can relate.
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LottieLou96
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Dear LottieLou96This sounds like a tough time for you and it sounds like it’s been difficult to get support.
Focal seizures can be distressing. What you experience will depend on what part of the brain is involves. You may remain alert during this type of seizure, or you may not be aware of what is happening around you. You may have movements that you can’t control, or unusual sensations or feelings. epilepsy.org.uk/info/seizur...
Anxiety is common when you have epilepsy and it can be very difficult to live with. I wonder if you have seen our information on epilepsy and wellbeing. There may be some useful information in there for you.
From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.
If you wish to talk to our helpline team and you live in the UK please do phone our freephone helpline 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 7.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.
hi LottieLou96 i am not new to the board but ive not posted for a while,funily enough because my tonic clonic epilepsy has been very severe for a while. i have had seizures since i was around 2 years old (38 now..i think?) im also severely classic autistic and have mild learning disability.
i have had no short term orr working memory at all since age 5/6 and my old learning disability nurse (part of social services learning disability team) who knew everything there was to know about epilepsy told me im losing a bit of memory with each seizure and its caused lasting damage to mine,a GP had mentioned something like this to my parents when i was 6 anyway.
i asked if going to a memory clinic woud help and they told me they woudnt as the memory clinic is designed more for older people who are developing age related memory problems.
this might be part of being learning disabled as well but witrh each seizure i get regresion, so i end up losing skills,and i lose the whole day,even who i was or where i was for a hour or two after the seizure.i used to suffer badly with todds paralysis after every seizure, and i had many seizures every day at this point so i was pretty much paralysed from the waist down permenently unless i had a days break which was very rare, but they increased my meds added two more anti epileptic drugs (in total i was on tegretol,keppra and epilim) and it has given some control back but i recently had a bunch of days of really bad seizures and the todds paralysis is back but luckily it doesnt hit me if its only three or less tonic clonics a day.
sorry its took me ages writing this as my cat must have thought he woud be a great help as he decided to first walk on my laptop while i was typing then he plonked his butt directly under my right arm while im using my laptop and is now using my right arm as a heating device,happily purring away.hes a bit to high up for an arm rest lol.
I also experience this particularly during a cluster of seizures. I dont feel myself at all and my brain just doesnt work properly, memory is way off and I am always forgetting what I’m saying. During the clusters that last a few weeks I feel like I’m constantly on the verge of a focal seizure. I forget what it feels like to feel normal / to have that clarity that you mentioned. I feel confused most of the time and sometimes nauseous. Its incredibly hard to explain to others around me, and soo hard to meet expectations to just carry on as normal.
I did have a lot of trouble with breathing and heart palpitations but this was found to be side effects of Topiramate (this drug was awful for me!) I’m not sure if they could be side effects of Keppra? I remember having difficulty with my mood levels on Keppra but that was years ago and I wasn’t on it for long.
I’ve noticed doctors/neuros like to put things down to anxiety like you said which is really frustrating! I was misdiagnosed with panic attacks at 18 for 1yr & 4 months until they suggested focal seizures and referred me to neurologist (another couple months of waiting) so no treatment that whole time. I wish there was more knowledge of focal seizures; we would feel much more understood & supported.
I’m sorry you have to go through it too. Not the most helpful response but it can be comforting to know others experiences so I hope it helps <3 much love!
Hi I am relatively new to this forum and was only diagnosed with epilepsy last year at 22 even though the doctors suggested that it was happening before then but got unnoticed as they were absent ones and only became apparent at the point of. tonic one. Since then I get partial seizures every now and again is clusters like many here. I can relate here when I have aura/partial seizures in clusters I can completely forget what was happened before, between and after it and it feels embarrassing actually.
My seizures sound very similar to yours, I have lots of clusters, severe memory loss and complete exhaustion. I have had 4medication changes in this year and have gone back to my original ones, I seem to have just taught myself that this is my life as much as I hate it and the feeling after the seizure.
To be honest my seizures have become a lot worse since I had covid and my vaccines. I have gone from having between 2 or 4 every 6to 8 weeks to having between 2 and 6 daily. I have also lost so much of my hair that you can see my scalp, so not sure what that’s about. So yes I can completely understand. I wasn’t sure if I read it right but did you say 47 weeks to see a neurologist? speak to your gp and see if they can do an urgent referral . I personally think the professionals are quick to say anxiety 😟 I hope everything works out for You👍🏽
I have just come across this thread again and read what u posted car67. I am also finding that I am losing small chunks of my hair without even realising. Do u know of any reason why this would be because I am at a loss about it
I’m sorry to hear that you are losing chunks of your hair. Tbh I think it is a side effect of all epilepsy medication, anyone I have spoken to has the the same problem. I’m currently on topirematesince April this year plus my other 3 , my hair loss is about the same but it has calmed my seizures down so I have to balance it out. Generally stress, does cause hair loss, I wouldn’t advice buying anything over the counter, nothing works they are all fads,I have done the research , however the only shampoo and conditioner I use is vivascal it makes my hair look a lot thicker , so that works for me. I’m not sure what else to advise to be honest apart from checking all your bloods etc, .but I’m sure they will have done all that, they just diagnosed me with alopecia areata but I’m a bit sceptical, but then I’m not a doctor! It is very difficult , I really struggled with it but I was desperate to get my seizures under control, after 14 meds change they seem to be a little better so I can’t complain 🤞.
Please message anytime, try not to get down though and if your really stressed please contact your dr or neurologist again.take care.
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Kepra 1250mg, Newly diagnosed, epilepsy 
Focal motor seizure disorder
Night time awakenings
Driving with Focal aware seizures
Pure stress and tension! Epilepsy seems to thrive on it!
