Does anyone else have Night seizures?

I wake up in the middle of the night gasping for air feeling like I've went a round with mike Tyson as it always feels after a seizure. It's disturbing my sleep to the point I don't want to go to sleep, I dont always know for definite if its been a seizure but tell tale signs are usually the sharp, deep cuts on my tongue which sting for days after a particularly bad night and feeling even more exhausted than usual. It's starting to feel like night terrors. "/

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  • I did and mentioned it to my neurologist who altered the way I took my medication, if this had not worked he may have added to the medication I took before bed

  • Thanks I've mentioned it before to my neurologist years ago haven't seen her for 2 yrs. Waiting on a GP refferal because it's becoming really problematic.

    I'm not currently on any medication to control them. I do take neurotin but not for my epilpsy it's for joint pain.

  • Hi msBrightside

    Why haven't you seen you Neurologist for two years when you still have seizures and aren't on any meds? You should have a strong word with your GP.

    I think I have Complex Partial seizures every so often in the night because I wake up with bruises (sometimes large :-) ) on my arms or body!?! Only me here so can't tell for definite what happens and they aren't Grand Mal seizures, as there are no tongue bites and they have been controlled by Tegretol meds. I have a seizure once a month during day time. I'll have to get a camera installed :-)

  • I've gave up asking the GPs as they tell me I've had all sufficient tests when I was admitted when I was 14yrs old they say because I had a MRI, CT and EEG I won't be able to have another one of either due to NHS funding. This was only a few individuals and I don't blame the NHS or believe them. I don't know what to do each doctor has made me feel ridiculous for even asking to see my neurologist. I have been firm to an extent and will only see one doctor at my practice for other health problems. Suppose I could ask him but I'm already starting to feel I'm wasting my time asking certain things. So I went straight to my neurologists secretaries in both hospitals she works at. I still came up with nothing one even hung up on me "/

  • Don't you have any other GPs surgeries you can go to? I know you are probably finding this difficult, but it sounds like they really aren't treating you right.

    There is a department in the NHS you can ring call PALS when you are having problems with your GP (or anyone in the NHS). Have a look at the link below and give the one nearest to you a call. They will be really helpful.

    You need to be treated better than you are being.

  • Aw thank you that's helpful didn't know there was such departments. I probably could but it's the closest GPs surgery and my other health issues make it difficult to travel any further.

    I have always felt that myself I think I go along with things to easy not wanting to cause a fuss.

  • Just give them a quick call and see what they say because I can't believe you're being treated like that.

  • It does sound a good idea and I do feel the service needs improved but I thought maybe it was just the same everywhere.

  • No definitely not. And you can see from everyone else's comments that they think the same.

  • I'm glad you all think the same. I will try with my new GP and if I still get nowhere I'll give them a call or might just call them anyway

  • Defiantly go back to your GP & ask to see your neurologist ASAP. I am lucky & my seizures are controlled by medication. Good luck

  • I'll give it a go :) I might try but the doctors don't seem concerned

  • Hello get back to your gp and neurologist am one of the lucky ones as i had brain surgery and have been seizure free for 44 weeks over nine months and its been fantastic sendin a big cuddle sounds like u need one :-)

  • Hey aw congrats on being seizure free I know what a relief that must be. Really happy for you :)

    Thanks, yeah could do with the hug it's a week before assessments in college and I've missed 2 days already. My lips still really stinging, don't think I had one last night though which is a relief. Slept straight through.

  • If you are at college you should talk to someone there about your epilepsy. I was allowed extra time in exams if I wanted it because of the problems that epilepsy causes to your memory. Didn't usuallly use it, but it might come in handy. I don't know if they'll be able to do anything for this round of assessments, but maybe for the future? You should speak to them as soon as possible anyway, just in case.

  • I missed this comment before... I hope I can get extra time I almost failed my last assessment from memory and stress issues. Communication is a problem for me just now with my lecturers my headaches and seizures are that bad I can hardly string a sentence. While out with friends I can't even hold a conversation it's frustrating, how I was in school makes so much sense now! I was very introverted and didn't know why.

  • Defiantly go back to your GP & ask to see your neurologist ASAP. I am lucky & my seizures are controlled by medication. Good luck

  • I'm glad they are controlled for you great advice! Got an appointment next week I got an urgent one.

  • I have never had this experience but have you talked to your Doctor,Consultant or of you have one .your Epilepsy nurse ?? Also the charity Epilepsy Action can be useful. You will find them if you google them Hope you get some answers soon

  • Thanks i will look into that, fingers crossed the doctor will refer me.

  • Hi msBrightside - yes, I have night-time seizures from time to time. My main grand mal seizures have been under control for the last 4 years - I'm on Lamictal (Lamotrigine) 400mg daily and this has totally controlled my "daytime" seizures. However, I do still get night-time ones from time to time. My husband says they don't last a long time - sometimes as little as 30 seconds - but there have been times when I have had 3 or 4 in one night. I think they are often triggered by some form of stress but that is only an observation not a definite diagnosis. My GP says that these night-time seizures are in a very different category from the full blown daytime ones - the only thing I can say is that they leave me tired and a bit 'woozy" for the next 12/16 hours. The strange thing for me is that, when my husband gently wake some up after the seizure has passed, I realise that I have been "aware" of something strange happening in my sleep. I can't describe it any better than that, I'm afraid. I used to have a lot more of these seizures but over the last year, it has only happened a few times. One thing to say though is that I have sometimes bitten my tongue, albeit it very lightly, so some of them must have had a bit of "grand mal" in them!

    Like everyone else has said, please go and talk properly to your GP and get a referral to a good consultant. You shouldn't be left with no help with the whole seizure situation you are in. There is a lot of help out there - you just have to ask for it - and sometimes be very firm about it too!!

    Good luck - let us know how you are getting on.

  • Thank you, your experiences do sound familiar to mine. Several boyfriends over a number of years have mentioned to me shaking and jerking in my sleep. They also said it only lasted a number of seconds, I woke up last night at 5am for no reason with proper cuts on my lips can taste blood in my mouth and throat from how badly bitten it is.

    They haven't got to the bottom of my seizures, they say it seems a rare form and doesn't fit to one type. I don't know anything as most of the diagnosis I was a teenager.

    Thank you :) I'll let you know how I get on I have had problems with them for years but felt the GPS were a dead end.

  • PS from me - I meant to say that, because these night-time ones are infrequent and not a huge problem for me, I have not asked about any other meds to try to stop them. I feel that I am already taking a reasonable quantity of medication and have decided not to add to the list unless things were to get worse - but that is purely a personal decision - it doesn't mean it is the right one for anyone else. With the situation you describe, you should certainly be looking at getting medication to help to control the whole spectrum of your seizures.

  • Thanks again :) You're right they should be under control. I can understand you're decision as I have many meds for other conditions and taking more does seem a pain. With these night seizures I'd do anything to stop them though.

  • Hi there!

    It seems to me your biggest problem at the moment is getting a referral to a specialist. I have had to do this recently, as well.

    I used to see a neurologist regularly, but then luckily I was a put on a medication which completely controlled my seizures. I was seizure free for 7 years, and after about 1 year stopped seeing the specialist, but have recently started having them again. It tool some time for the referral to come through and I did have to chase it up after I had a second seizure, but it came through eventually.

    I think what you have been told is completely wrong. You don't only get to go back to your specialist for more tests, it should also be to discuss with them how to live with your condition, eg what medications you could take, what help there is out there for you, what special precautions you should be taking (and you can take relatives, too, so they can get in on the discussion). Plus things change - your symptoms might change, your meds might become more or less effective, or you might decide to have children, which needs to be monitored carefully with epilepsy.

    All the best, and don't stand for any messing!


  • Yeah hopefully I'll get referred somehow. I think it could be to do with the fact the last tome i saw her I was getting on ok so the notes will probably say everything is resolved.

    Only a few months later they got worse again after one bad seizure. It wasn't long after the last appointment in 2011 my night seizures got bad.

    I'll see if i can get through to the surgery tomorrow they said I need to phone at 10am for appointments to be released on the day. The problem is I'd need to wait possibly over a week to see my own doctor. I don't know if I should just try whoever is available on the day.

  • You have a legal right to a refferal and don't let anyone tell you otherwise. I am spitting with anger at how you have been treated and if I could would happily wring the necks of those so called medics. Do as horsey says and contact PALS, ring the Epilepsy action helpline but please do not think you are being a nuscience, there are people out there who can and will help.

  • I just saw this and am amazed the GP said that, granted its difficult for a GP to understand it all but NHS funding isn't the problem.

    if your MRI was carried out more than a couple of years ago then the procedures they use now are more sensitive, and the MRI machines in many places are better than they were then.

    I had an MRI done in 2006, it showed nothing. I had another done in the same machine at Chalfont St Peters in 2008 and they found a lesion. The only difference is that the scientists working on it have improved the techniques they use.

    There are also big differences between the types of machine used, the standard MRI scanners used in alot of hospitals are unable to make as good a picture as some others. The best MRI scanners are called 3T or 3 tesla scanners. They aren't in every hospital so you may have to travel to get a scan but it is well worth it.

    If your GP has your medical notes they should know where the scans were done and be able to find out whether it was a 3T scanner or not.

    As for funding, if you get a better diagnosis and as a result your seizures become better controlled you cost less to the NHS than if you continue taking larger doses of medication and have more regular appointments. Your GP should understand this.

  • Yeah it might not have been a 3T scan mines was in 2006 as well but it was at the neurological hospital in Glasgow.

    I have had bad seizures outside since then. So to me there is a possibility of damage.

    You will all be glad to know I miraculously got an appointment today someone had just cancelled before I phoned. I got one of the good ones too who is also a consultant in dermatology at the hospital. He referred me to my neurologist and thinks she could help with all my conditions. :)

    Thanks everyone for the push to try again :) xx

  • So glad to hear this! I am going to meet my new neurologist next week and I am excited and nervous! My husband and I really want to try for a baby, but we want to check whether the doctor thinks it is safe with my current condition before we do... Just hope we get the OK, and hope your appointment goes well, too!

    Hugs xx

  • Aw thanks for your support :)

    Good luck for your appointment! I don't know for sure but I think as long as it's monitored while pregnant it's fine if the seizures are controlled especially. My best friends mum has epilepsy and has 2 kids :) All the best for you it sounds very exciting.


  • Well, it also depends on the medication. A lot of AED (anti-epileptic drugs) increase the risk of children having developmental problems if taken during pregnancy. Unfortunately this includes the one I take, Epilim Chrono. I'm on a fairly low dose, so the risk shouldn't be too high, but the neurologist might think it is better for me to switch to a different one or something...

  • Oh yeah he might switch it might be safe in a low dose though you never know I hope all the best for you. He might find something safer. I hope it goes great!

  • I don't remember the time when I was having seizures--they destroyed my long-term memory completely. However, I was told that at first, the only time I had grand mal seizures was in the middle of the night (around 3:00 am). I guess they started with a yell, then the seizure happened, and then I would get up and go to the bathroom and remember nothing of it the next day. I guess they must have been pretty scary--my family thinks they were the reason he left me.

  • I find my short term memory is worse my sister even calls me dory from finding nemo hilarious nickname. I could remember hints from years ago but if you ask me what I had for dinner last night I might have to think for a sec.

    I have found I wake up suspiciously during the night for no reason. I suspect it's grand mal since a boyfriend said I reverse head butted him while sleeping. My body was secretly trying to tell me something he did turn out to be a bad egg lol

    That's horrible if that was the reason. I wouldn't want to be with someone who would think that way though so you are probably better off without him

  • My family agrees with you. (I don't really care, since I don't remember him anyway.) :)

  • That's he right way to look at it and yeah you're family are right. Plus there is plenty more fish in the sea and I hope you find someone alot more caring and understanding :) x

  • I did find a guy shortly after my seizures were controlled who has become my best friend. I met quite a few other guys in the last 16 years, but they don't quite measure up--and the seizure thing/memory loss freaked a lot of them out, even though I wasn't having seizures any more, and even though my memory has seemed pretty normal since then (I just can't remember the details of the first part of my life.)

    I hope you'll be able to figure out what's going on with you; our brains are so complex I'm pretty sure even neurologists don't have a really good handle on how they work. Have you looked into seeing a doctor that specialized in seizures? In the US, we call them epileptologists--if you live in the UK, I'm not sure what they are called there.

  • I've been lucky most guys are a bit freaked out initially but almost every guy I've had a seizure in front of and they have been very supportive though slightly worried. It can be a shock to people that haven't seen it before especially if they care about you. I always say the right guy won't mind.

    My memory loss is getting worse and gets me into trouble sometimes bug I generally just laugh it off. I would to see s neurologist in the USA would have to research it though as I'm based in the UK.

  • Hi Ms Brightside! Just saw this post after joining and it was kinda appropriate given my reasons for joining in the first place...I was diagnosed with frontal lobe epilepsy 2 and a half years ago, my seizures mainly arise from sleep but that doesnt do justice to them at all! Some of the symptoms you describe are similar to mine before diagnosis, though it looks like my condition has been underlying most of my life. Frontal lobe epilepsy, although it is the second most common form of epilepsy after temporal lobe confuses even some neurologists save those with specialities in this area and the updates for clinical treatment are based on ongoing research. I too was subject to the vagaries of the NHS postcode lottery and refused to believe it for quite some time, then when things became more concerning actually moved to an area where I knew there was a university research hospital(they had been involved in my diagnosis since they were the only place locally with the right kind of mobile EEG/video telemetry suite)and my life changed almost immediately. Frontal lobe epilepsy, nocturnal or otherwise can confuse medical staff by dispersing the irregular electrical discharge in the brain, associated with all types of epilepsy, quickly and widely so that it appears normal on a standard EEG reading, or occurs so deep in the frontal lobe that it would not register since EEG readings can only register electrical discharges when they occur across or near the surface of the brain. Often the type of seizures associated with related conditions can seem relatively non-threatening since they appear to be short and self terminating. The danger, as it was in my case, is in if the condition goes unmonitored or untreated for long periods of time, these seizures can then 'cluster' together, recur more frequently, become more debilitating and in some cases become secondary generalised seizures (the same as tonic clonic) and can 'spill' over into daytime. I now find myself affected by both simple and complex partial seizures, night and day, with the constant threat that these will cluster into much worse attacks. My condition is proving particularly resistant to medication (over the 2 years I have been prescribed fairly high doses of carbamazepine, keppra, topirimate and clobazam as a 'rescue' med after particularly bad clusters), with my neurologist now trying combinations and admitting that the likelihood of controlling things with medication is lessening with everything we try. Unless we can gain any measure of control over my seizures we will never be able to find any kind of focus for them in the brain so I am unlikely to be a candidate for any kind of surgery. I am relatively well educated (two degrees and a phd) and up until a year and a half ago had my own music studio and cafe, now with the combo of the seizures, chronic sleep deprivation through them, the medication and side effects, I have neither business, feel unemployable and can barely string a coherent thought together(this post has taken almost am hour to write/edit etc)! The point being? Make a fuss, jump up and down, tell them whats wrong over and over, ask to see another expert and another expert until you feel you are in the right place...I waited too long, I hid away from girlfriend's comments, I thought I'd be ok, I wasn't! Make sure you are, its great you got your appointment, I hope the neurologist really helps and you've found the right place, if it feels like it isn't, ask someone else! Don't be put off by neurologists, they seem to be used to being top of the heap in most hospitals and quite a few I've encountered have a bit of a 'god complex', dont be afraid to question them or stamp your feet, good luck! :)

  • Sorry to hear you had to give up so much I can imagine how hard it is. At 14 I used to have a seizure everyday this lasted for about 2-3 years. It was only when I was admitted to the southern general which has their own neurology hospital and teaching university (I used to wake up some mornings with 6 young doctors standing around me asking questions and doing tests lol I was happy to help them learn though. It was in that stint in hospital my first night seizure was noticed. Luckily the day ones only happen every 4-6 months sometimes closer than that my trigger can be lack of sleep, stress, temperature changes or alcohol.

    Frontal lobe epilepsy could be a possibility I've had about 3 EEG tests all normal and a normal MRI 9 years ago. Think I may call my doctors and double check the referral has been done and that it is with my usual neurologist. Chasing it up is sometimes the only way I think I am in good hands with the usual neurologist. Probably will take about 6 moths to see her as she's always in demand with being the top neurologist in Scotland and possibly the UK. I'll let everyone know how I get on.

  • My seizures are generally at night. I have no aura and I'm alone but I can tell I've had one by how I feel afterwards. I never know what's going to happen. Once I broke a finger and have no idea how. The knuckle was crushed.

    I have tried many medications in varying strengths and combinations. I had 2 or 3 seizures a month on average but the medicine Fycompa, along with to oxcarbazepine, seems to be keeping them at bay. However the dizziness is pretty awful. It's taken 15 years to find an effective medication and I'm reluctant to tell the neurologist about the side effects.

  • That's exactly the same as me I torn a tendon in my foot woke up with it black and blue. The doctor presumed it was a seizure, I have found it has happened less with medication. I do get terribly dizzy feel the doctors don't find It relevant I do have an array of symptoms with a few diagnosed conditions though so it is probably hard for then to tell which box each symptom goes in. Could do with something to help it dizziness had got worse with the new medication.

  • That's exactly the same as me I torn a tendon in my foot woke up with it black and blue. The doctor presumed it was a seizure, I have found it has happened less with medication. I do get terribly dizzy feel the doctors don't find It relevant I do have an array of symptoms with a few diagnosed conditions though so it is probably hard for then to tell which box each symptom goes in. Could do with something to help it dizziness had got worse with the new medication.

  • My seizures seem to be similar. Its how I feel afterwards makes it hard. Am working with GP at present to find meds. which suit. My memory seems to be getting worse & worse, little by little I realise what will happen as I get older. And what will go wrong with the meds. too, the side-effects are not nice. Since I've not found any which help, I just wonder to go without and enjoy as much as I can NOW.

  • I can relate my memory is becoming concerning! Some people take advantage of it too. It's usually worse when I'm stressed, tired or in pain from other conditions.

    I try to just forget how awful it is too and laugh at the confusion haha It's all you can really do.

    I really hope your GP helps its great when you find a good one.

  • I sometimes have night seizures but wake feeling ordinary, I have trouble getting to sleep again and often just lay awake the rest of the night, so in the next day have very little energy.

  • Yeah I can tell by my energy levels sometimes. The neurologist says there is not much they can do. Doesn't help I forgot all about and appointment last year and they discharged me.

    I've found meditation very useful with getting a solid sleep I do it every night.

  • i yes I have night sezuires and iam scared to sleep at night tv view or surf net doctor gave me some muscle relaxtens but no good so I kmow how you feel

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