Hi,After a conversation about weaning back down to original dose twice a day in November, the epilepsy nurse said she was going to contact me after 1 month to see how i was doing. This should have been December. Its now nearly March and im still on 500mg morning and 750mg evening.
After first having a seizure in January 2021, i had another in march 2021 and a third in April 2022, im still none the wiser about the type of epilepsy I have but i noticed on my medical record at GP, at some point Status Epilepticus had been recorded, which no one has told me about.
Since August 2022 ive had fluid behind eardrum which usually clears in a few weeks, but ive never had it this long, 7 months. Constantly dizzy and disorientated and have weakness mainly in my right leg.
I get regualr pulsing in my head to the point my brain feels like its so agitated that im going to have another angry outburst.
Im wondering whether its all connected. These problems seem to have started after 1st seizure when id finished my covid isolation and as a result sometimes I just dont want to exist.
Dont know what to do.
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Dawn43
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Hia Dawn. It sounds like you have been really let down by epilepsy nurse but you really need to have the conversation with your neurologist about any changes to amount of Keppra you take and the pros and cons of doing so.
You mention Status Epilepticus, I believe that is a type of seizure that won’t stop unless you are given an injection by medics. Is that how your seizures are?
It will be a real torment for you not even knowing what type of seizure you’re having so that’s another thing I would ask your neurologist for clarification about. There are other anti-epilepsy drugs that you may well want to try, ask about that too.
Hi michael, thanks for replying. To be honest i dont trust the neurologist at all. Its since she increased the dosage that my problems started. Then she suggested lamotrigine which she didnt tell me the side effects, i refused after researching, and even then she didnt explain how to to take it or how to gradually introduce it while weaning down keppra. As i also have psoriasis, i dont think lamotrigine would be suitable.As far as status epilepticus, thats all i know after seeing it noted on my gp's computer, it doesnt state this on any letter or discharge letter ive got. The reason according to neurologist as to why it takes me a long time to wake up from the 3 seizures ive had in 2 years is "everyones post ictal phase is different". At the time of my second seizure which happened on a saturday afternoon, i woke up on a ward the next morning to be told id also had a sub arachnoid Haemorrage.
There was no routine testing until july 2022 as "doctors didnt see it as necessary", all they have gone off is ct scans.
I was diagnosed with chronic otitis media in September, had it since August after covid, and am constantly dizzy and disorientated, have 40% hearing loss in right ear, hopefully ENT appointment on 3rd march will sort that out so i can start to feel some sort of normality again.
it is really very tough trying to cope isn’t it? But not existing is not the way to go. It took me three years to get the right Keppra dosage to manage my seizures and one of the awful side effects is constant ringing in my ears. I didn’t have this on my old meds (lamotrigine) so I can only assume it’s connected to the Keppra as they started at the same time. I have “moderate to pronounced “ hearing loss since starting the Keppra according to the audiologist. But the side effects of the lamotrigine were so much worse for me (and didn’t control the seizures) that I’m sacrificing my hearing to keep the seizures at bay. In my (completely unprofessional) opinion - you made the right decision not going onto lamotrigine- they were some of the darkest times of my life being on that drug.
I’d imagine your fluid retention, ear issues, dizziness etc are as a result of the Keppra and finding the right dosage for you is going to be the key. It’s a fine line we have to tread, putting up with the seizures against putting up with the side effects of the meds.
When moving from one to the other I was lucky to be enrolled onto a national study which gave me access to a lot of experts. One of whom I rated very highly - he said to me “I’m not inside your head, I don’t know how it feels, only you do. You will know how it feels on more and less of the Keppra.”
Don’t get me wrong, I’m not advocating throwing out the meds or jumping the dosage - I was very closely monitored and allowed to reduce and increase until I found what worked for me. My point is - push, push hard against all the experts who aren’t in your head and make them listen, make them understand.
Only you know how it feels, tell them they need to work harder to find the right dosage for you (or even a different medication) but don’t allow yourself to spiral down because they’re too busy to help.
These days I have noise cancelling headphones and listen to thunder storms on a smart speaker at night to help me sleep, it’s manageable. It could be for you too, you just have to keep fighting.
If I had stayed on lamotrigine I probably wouldn’t be here anymore.
Hi Dawn, I’m sorry to hear of your experience and how you are feeling. It is so very tough and exhausting when trying to navigate your way through and I hope you can find your path.
I joined this forum to understand my husband’s epilepsy and to seek advice and listen to similar experiences to help my husband and I navigate his “new world”.
The things we learnt were that although Keppra is a great drug for many, it is not for all and there are many other drugs out there. My husband’s epilepsy got much worse on Keppra within days of starting it and he experienced a wide range of debilitating side effects. We pushed and pushed the neurologist to change his drug, strongly disagreeing with her opinion and it was a six month battle before she agreed to the changes and with guidance we got the change to Epilim and his side effects all disappeared within 3 months and he is now 15 months seizure free.
You mention you are unclear of the type of epilepsy and that’s hard and important for you to know. We also struggled with the moving landscape of what type of epilepsy my husband had and kept ringing the neurology dept until we finally got our answer. I guess there will be variances in service levels around the country but one of the ways I found to navigate the system was finding out the name of the neurologist’s secretary and she was very helpful in getting messages through.
We also chased and bothered the neurology dept for a named nurse to enable us to have some direct access whilst going through all this and used two tactics, firstly getting our GP to throw some weight behind it and secondly we rang the hospital at different times of the day and evening to get different people to speak to until we got a friendly ear and what we wanted.
I am sharing this with you because for what felt like a long time life was miserable and it felt like a nightmare but by persistently pushing for answers and help we are now lucky to be enjoying life again.
You are not alone and the kindnesses from people on this site will hopefully give you the insight and confidence to demand the clinical attention you need and have a rightful expectation to receive.
Sorry to hear you feel unsupportive. Finding the right treatment can be a difficult time. As others have mentioned, it important you fully understand your epilepsy, including what type of epilepsy you have and clear guidance on you medication.
If you haven’t already, try phoning your epilepsy nurse. If you don’t have a number, ring the main switchboard, and ask to be put through to the epilepsy nurse.
It sounds like you are really struggling, I wonder if you would find it helpful to use some of our other services:
We have our virtual talk and support groups that will give you the opportunity to talk to other, you can phone our helpline team or register for our befriend service.
Our befriending service links people who are affected by epilepsy to a volunteer befriender. Your befriender could be somebody to listen, if you are going through a difficult time. They could also help you take steps towards positive change,
Hi Dawn, I have a constant rushing noise in my head, that on some days moves to a pulsing sensation. I put this down to tinnitus & I’m sure they’re linked but no professional agrees. I also get a weird feeling in my head that is very hard to describe - it kind of feels like a muscle twitch but in my brain. I’m not getting this pulse/twitch as often now my seizures are controlled. I was on 1000mg keppra & am now down to 750mg a day & I’ve been seizure free for nearly 3 years now. It might be helpful to chase the epilepsy nurse about the change in dosage & ask about the status epilepticus to put your mind at rest.
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