I’ve not been diagnosed with epilepsy despite having various tests (ECG, EEG and a MRI, with the results showing no abnormality. I’ve also met with a neurologist who seems to believe that I’m not even suffering from seizures, except for the one time that it was witnessed.
The first instance of this occurring was 4 years ago, during an afternoon nap. Fortunately my roommate and friend were in the room. They described my behaviour as my body stiffening and shaking, eyes rolling up and foaming at the mouth. I attributed this to tiredness as I’d come back from travelling just a few days beforehand.
The next occasion was two years later, no witnesses but I felt the symptoms were the same as the first instance. This was in the morning when waking up. No medical testing had occurred at this point.
Next occasion was August 2019, this occasion included a tongue bite and I’d rolled off my bed. On this occasion I did pursue medical help and went through the tests as per the above. This has seemed to be occurring on and off on a monthly/bi-monthly periodicity and there seems to be no link as to what is causing them
The neurologist said that the occurrences from August till recently don’t sound like seizures to him. The most recent occurrence was last month and my flatmate heard a strange noise coming from my room, he saw that I was suffering the symptoms as described in the first occurrence and I’m currently trying to inform my neurologist of this but given waitlists etc, everything takes an age!
Apologies for the length of this post, but it’d be great if I can get some advice or direction on support to seek out. It’s quite stressful living with an undiagnosed condition!
Many thanks
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I’m sorry to hear that you feel that the neurologist you’ve met with does not believe you. In the US you have to have two seizures to be diagnosed with epilepsy. Getting a second opinion may be a good idea. There’s many types of seizures, and it sounds like you may be experiencing nocturnal seizures. I’ve experienced a few of those. Signs of having them besides witnesses are tongue and cheek bites, sore body, sometimes urinating yourself and extreme lethargy. It is suggested that if you experience nocturnal seizures; one should sleep on ones side and with no more than one pillow. The reason is so that we do not choke on the foam you’re describing or suffocate by having too many pillows. It would be a good idea to get a second opinion. I would want to have a neurologist that I trust and feel they believe me. I experience more than one type of seizure and have been able to see patterns. What triggers my seizure are: lack of sleep, stress, and menstrual cycle, and sudden change in body temp. There are many other triggers and we all react differentlet. Having a seizure log is very helpful in trying to find your triggers. I’ve had EEG’s, MRI’s, CT scans, and many other things done. They cannot locate where the seizures are coming from. I am currently over prescribed and should be seeing a new neurologist soon. Let me know if you have any questions.
Hi, thanks for your response. I sent a follow up to my psychiatrist last night and funnily enough, have now received a response with a diagnosis of epilepsy due to two witnessed seizures. I’ll be started on Sodium Valproate.
I feel that you’re right with respect to the nocturnal seizures and on some occasions, I’ve had tongue biting too. As well as a sore body in the morning after, though, not relieving myself at night. Thanks for the advise on the pillows, I do normally sleep with two side by side but will remove one to reduce any risk.
I’ll start to take detailed notes on the follow up to a seizure to see if any trends to exist. Out of interest, I’m presuming you haven’t been diagnosed with epilepsy and is there any advice on medication if you have experience with this?
I am sorry to hear of your diagnosis. I’m glad you sound optimistic and willing to do things you haven’t done before to help yourself and health.
Notes will be the best form for both seizure patterns, and possible medication side effects. I advice you to always look up what you are prescribed, be mindful of how your body reacts to it, and if you’re unhappy talk to your neurologist. Being seizure free is the goal, but sometimes the side effects of the medication outweigh not having seizures; in my opinion. Many times the first medication you try works, and you’re okay for many years or lifetime. I am 29 and was diagnosed at 14. I have multiple types of seizures, the location they come from are unknown. I have been on many medications and I am currently on 3. I did not start doing research on what I was being prescribed until I was in my early 20’s, in retrospect I wish I had. Yoga, jogging, meditation, and any other form of exercise also help the frequency of seizures I experience. I only made time for this 4 years ago and wish a neurologist would have advised me to add this to my lifestyle.
Thank you G1na, some really great advice and encouragement, most appreciated! I feel somewhat actually relieved that I have been diagnosed as funny as that sounds, with a great deal of anxiety being lifted off my shoulders. Hopefully the medication continues to work well (haven’t had a seizure yet since taking the meds and no side effects except feeling sleepy on the first few days).
I hope things continue to go well for you too, fighting!
Until you have a better diagnosis, maybe try and relax properly for an hour or so before going to sleep so no console gaming if you do that prior to bed. Also write down what you have done and eaten in the morning and during the day prior to having a seizure during the night. You might be lucky and stumble on some pattern yourself before you even see another consultant. Good luck anyway as help and diagnosis can take a long time
Thank you Alex. I think the advice is really valuable here, I’ll start to document as you’ve mentioned and the part on stopping gaming before sleep makes sense! Luckily I’ve received the diagnosis as of this morning and I hope the medication prevents future reoccurrences!
I can’t belie the EEG didn’t catch anything.. this looks like a temporary epilepsy( my sister and I have epilepsy , but hers is more like one in a 10-17 years or more.. very rare.. on the contrary for me I have to take medicine every day.. she doesn’t anymore) try to relax, do not get stress, do exercise or get tired, (I found out that we epileptics do have to be tired before going to bed, so we can have a good day)and most importantly what every neurologist recommend is sleep well.. try to have a very good night sleep and you will have a good next day..
Hello I do certainly hope that you are right in that it is something temporary! It is rare but not impossible for epilepsy to not get picked up in the standard suite of scans I’ve been told.
Yes good sleep hygiene seems to be a good way to control any symptoms. I’ve recently started to take up book reading just before sleeping - it works really well 😂
Hi there. They certainly sound like epileptic seizures to me! My son’s condition is described as “Generalised Epilepsy” but the doctors call it nocturnal epilepsy which means he’s always asleep when a seizure occurs. Usually it’s during the night but occasionally he’ll fall asleep on the sofa, as you did, and then have a seizure. It took five years to have him diagnosed and was only when he had a girlfriend who used to stay over with him that it came to light. It’s difficult to capture. He has to live with us now (he has other conditions) and we are sometimes only aware he’s had a seizure by a very damp pillow. He has no recollection whatsoever. He is very tired though. It took numerous tests ... MRI, EEGs, etc but it was only when he had a sleeping EEG that they admitted it was epilepsy. He takes sodium valproate which has little effect on the seizures but does stop him biting his tongue. At one stage he couldn’t speak properly because his tongue was in shreds. I’m afraid you have to accept that with the NHS it’s a marathon rather than a sprint. We had to have some very full and frank discussions and eventually a change of neurologist.
My advice would be - if you have a friendly flatmate who is wakened by your seizures (warning sign for us is a gutteral sound), try to persuade them to film it for the medics. Also, make sure your bed is safe and there is nothing you can bang your head on (Alex has frontal lobe damage from either falling out of bed or banging his head on the headboard). Just the other month he got his head wedged between the bed and the bedside table and there was nothing we could do (two pensioners trying to cope with a 6’2” bloke at 2am was worthy of the Carry On films). He now has his bed against one wall, a padded headboard and no bedside table.
Apart from the secondary effects like head banging, tongue biting and fatigue, there seems to be little Impact on general health from nocturnal seizures but you need epilepsy diagnosed so keep plugging away.
Good luck and let us know how you get on. If you need moral support, we’re always here.
Sorry to hear about your sons condition but glad in that you’re more sure about what it is! I think not knowing and at the same time, not getting anywhere with the NHS can be frustrating.
When I have occurrences I awake from my sleep and am conscious for what I estimate 10-15 seconds at the start of the seizure and then pass out. So I do recall the early symptoms and the pain, fortunately I had two witnessed seizures (first in 2016 with my roommate) and in March this year by my flatmate who as you mentioned heard the seizure at around 5AM. The seizures only really started to appear August 2019 and some of them were potentially sleep paralysis hence the neurologist had a hard time admitting it was epilepsy, especially when paired with the normal eeg, mri results. With the second witnessed seizure though I’m glad things changed.
I’m also on sodium valproate, my dose increased from 500 to 800 as I had a seizure two weeks ago roughly. It’s still below the average adult amount I believe but oh well, it’s a waiting game as you mentioned and a bit of trial and error!
Appreciate the advice! I’m keeping my flatmate up to date on my condition, medication etc. I do have beside tables but I tend to find that my seizure just rotated me on the spot - I sleep in the middle of my bed so it’s pretty safe but will look into moving them anyway! The tongue biting is super painful, there were occasions where it would be sore for me a good two weeks after... but it doesn’t happen on every seizure thankfully.
Thank you for the support and all the best for your family
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