Nead and epilepsy - feeling alone

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i have posted before about my epilepsy and always felt there are others going through what I am and it will be okay. However A new strand of complication has arisen and am looking for answers. I have a month until a neurologist appointment but can't spend a month how I am at the moment.

I started keppra in December because lamotrigine didn't work and since June I have started having non epileptic attacks. I get a really hot and heavy head and so tired I feel I could fall asleep on the spot I can't concentrate on what people are saying and then suffer memory loss and confusion afterwards because people often try to move me. They leave me very tired and take a long time to recover from. I have just started A levels and while school supports me really well in the classroom they are reluctant to take me on school trips in case something happens which is a shame because I used to love the outdoors but since these non epileptic episodes I am more reluctant to do anything. Before any medication for epilepsy I could cope with the seizures very well they could be annoying but I recognised them and could recover fast and enjoy living but these are so time consuming.

any way My question is has anyone got any information about whether medication (specifically keppra) can cause people to have non epileptic attacks. Or information about people with both epilepsy and non epileptic attack disorder. I search online but It always takes me sites about how people with non epileptic attacks shouldn't take epilepsy medication, but I can't find anything that supports people or gives information about having both and why that might happen or what causes someone who had no traumatic experiences before to suddenly have a condition that occurs to people when their mind can't cooe with remembering something awful so shuts down. The only useful information I have is that people with it shouldn't give up doing all the activities they love and must relieve themselves of stress which I am finding ironic seeing as what I love is camping and trips away and I stress relieve by camping and trips away but I can't do any of these things without getting rid of the epilepsy. 

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  • Posted

    Hi Penguins73140, I used to be on keppra for my seizures, but I didn't have any side effects. If I remember rightly, they are to control seizures, but for someone who doesn't suffer from epilepsy it can cause epilepsy type seizures which can come in many forms. What you are describing sound very much like what I have before I have a full blown seizure, I have 'auras' and it's just like de ja vous... a feeling of 'doing something before', it was so strong that if I was stood up I had to hold on to something as it felt like I was being pushed over, I have a heavy head. .. after that passed I had about 30 seconds before my seizure started....

    I'm sure that if you read the sheet that comes with the keppra it says, ' can cause seizures/fits,' or something on those lines. If you've not been diagnosed with epilepsy, I'm surprised they have put you on it. If this is the correct I would suggest you go back to the doctors and not wait for your neurologist appointment.

    I really hope this helps. I'm now just on Topiramate, if I can help any more please feel to ask. You can email me if you want.

    I was diagnosed when I was 34, I'm now 43... so starting with epilepsy mid life....

    GoI'd luck xx

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  • Posted

    .... just to add. .. if you drive, be careful, if you have seizures, you can't drive for 1 year after one. I went 3 years not driving until they got meds under control.

    I've just re read your message.

    The reason I started with epilepsy is a mystery! I was at home in bed when I had a full blown attack, lost control of all my bodily functions (not good, and I don't remember anything of that day) I was taken by ambulance to the hospital, I was kept in for a week. The consultant told me I'd had either a mini stroke or I had a brain tumour... I had to wait 18 weeks more an mri scan, needless to say that was a very long 18 weeks. In the end it was neither and I had 'just developed it" .... it happens. It was hard, it took a long time to get the right meds, my hair fell out as my meds were to high, it grew back curly! Lots of things happened before I was under control. I'm now 8 years fit free.

    Do everything you want, don't change. I tell every one I become friends with that I have epilepsy, at least then if anything does happen they know what to do. It's part of me now, like a friend... don't let it be your enemy.

    Good luck xxxx

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  • Posted

    hi there , i too am on keppra , but havent been on it long , i was thinking i had found just the right pill , didnt have a turn for a couple of months , when i did it still took a week to feel i was back to normal then another and the last turn was just a small warning , later in the day a longer one so i thought i would get them again as usually they continue over 2 days , but nothing happened , but the after affects still hung on , i had nightmares woke up with my bp high and palpitations , went to dr that day , but he didnt tell me anything to help , now since that i feel i have gone through a horrible time of feeling anxious , lonely , wondering what next is going to happen , i slept on and off through the day , felt better after a nap and a burst of enegy , i dont know if its the keppra or my old brain , scared too ,maybe its just that im going through a stage , thinking about myself just too much , usually im pretty level headed , hard to keep motivated , oh dear i hope this doesnt sound too bad lol wondering if my brain needs to get used to the keppra , and yes its so hard to explain to anyone how we feel hey , and to explain the symptoms too even to the dr's  

     

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  • Posted

    Hi, Sorry to sound ignorant but exactly what is a NEAD, I think I know but I would to be sure.
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    • Posted

      So I have focal epilepsy anyway but aside from epilepsy there's a disorder whereby people have non epileptic seizures, mine appear to imitate partial seizures as I do not pass out but I can identify the defference between seizures and non epileptic seizures other people pass out but if in an eeg there are no abnormal waves so they don't have epilepsy it's quotes confusing to explain as I've only recently found out about it myself
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    • Posted

      I have, although controlled, simple partial seizures, but have had full, floored,seizures.... many mri and ct and eeg's... most of the time I'm semi conscious, just can't control what my body is doing, very strange!
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    • Posted

      I have only ever had one seizure in 30 years where I lost consciousness but I was playing squash at the time, an anaerobic sport!  I was diagnosed with complex partial epilepsy of the temporal lobe, my symptoms are of three types:  1.  absenses - where I am not aware of what is going on around me but anyone nearby probably wouldn't even notice, I recover feeling confused after about 5 minutes.  2. deja vue - speaks for itself and 3. aura - I thought these were the least serious but have just read these can often lead to a full seizure, fortunately they haven't yet and hope they never do.   My seizures come in cycles, very roughly every month.

      ​I have just found out there is a problem with supply of Epilim Chrono, this is one of my medications.  I have been given a generic for Keppra again, a tablet that seems not to dissolve and thus is useless.

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  • Posted

    For once I may have some info that is straight from the horses mouth. My wife has recently had a massive increase in activity with the seizures changing slightly, she had a week in a video telemetry clinic and it turns out she was having non epileptic seizures.

    these are common in people with epilepsy and are formed in a similar way to a panic attack.

    due to the medsyou are on a panic attack can not manifest its self normally, your body's default /panic setting is a seizure, these will be different to a epileptic one. My wife NEAD one are shorter 5mins, lots of crying, and fast recovery (5mins) tops. Her elilepcy one last for 6+min, silent, lots of movement and recovery is an hour.

    the problem is you tell your neurologist that your seizure have increased hey increase your meds, your tell them your seizure have increased more meds and so on...

    the AED meds do not work on NEAD seizure. As the NEAD seizures are not formed in the same parts of the brain as epilepsy seizures.

    from the video telemetry it was very visible when a epileptic incident happened the brain waves go mad. When a NEAD incident happened not that much of a change.

    my wife's Meds have been reduced and she has been diagnosed with depression, a few visits to the phycatrist and the NEAD have stopped

    its a long process I'm afraid this has taken us 6+ months so far 

    good luck

    jason 

     

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    • Posted

      This is very useful information thank you!

      its good to know what the neurologists/epilepsy nurses might say and do in the upcoming week with my appointments glad to hear there are people who have Nead and epilepsy and it could be from the medication as well as underlying stress as I know that keppra has high chances of depression side effects so hopefully less meds will help especially asters is evidence these attacks have only started since an increase dose in keppra

      thanks

      penguins

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  • Posted

    Keppra is actually used for seizures and what you were feeling when you were taking it were actual side effects from the drug.  Have you consulted your clinician regarding those side effects that you have felt? It's very difficult to diagnose NEAD.. Non-epileptic attack disorder are often mistaken for epilepsy. What does your electroencephalogram results show? If you were dianosed with NEAD I don't think that you should be taking Keppra or other epilepsy medicine for that matter unless you've actually experienced seizures. Why did you started taking keppra by the way. Why was it prescribed to you? You see NEAD is also known as dissociative seizures which is different from epileptic seizures. NEAD is traditionally attributed to psychic trauma. There are a lot of differences, so it is necessary to 100% sure on the diagnosis in order to trace the actual cause of the seizures. If you are positive about your NEAD I suggest that you talk with a psychologist too.
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    • Posted

      I was given keppra because lamotrigine didn't work, I was given lamotrigine because I have temporal lobe epilepsy. Since the keppra increased I have developed Nead, this made me presume that because of all the side effects related to it that I got at the beginning of keppra that the medication could be contributing, I started medication only because the seizures were stopping me doing fun activities not because I couldn't cope, now this Nead has stopped me doing everything including school stopping me going to school for 2 weeks, I wish I had never said yes to the medication in the first place my life used to be so much better even with the seizures. While the seizures have reduced I still get small ones very regularly so it feels like there is no point to it at all. I tried to tell my neurologist at the appointment how much I hated the medication and how I just wanted to go back to seizures instead of seizures, medication and Nead, but he doesn't accept that keppra has caused it even though there was a day I forgot medication and had a really great day, it has only started since keppra and the feelings in a non epileptic attack are the same as the side effects I got when started the keppra. He just told me what I had already worked out for myself in the 3 month wait to see him about how the episodes are non epileptic, I'm still having seizures and so he is going to try a new medication which I really don't want and anti depressant things so I will fail miserably at school if they ever let me back. I feel like everyone's against what I want
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