Night time awakenings

[lebasor]

My wife has been diagnosed with epilepsy. She started with focal epilepsy that Levetiracetam sorted out. She moved through Lamotrigine to Epilim. She missed a few doses that resulted in three tonic clonic seizures. As a result, her neurologist prescribed an increased dose of Epilim. She is currently on 500 mg Epilim in the evening and 300 mg Epilim in the morning. Now she has had about one month with no seizures except possibly that every three nights or so, she wakes up around 2 to 3 am calling out with alarm and agitation. The first sign is suddenly louder breathing. Sometimes, I think it is connected with a dream. She hears me and responds to my reassurances that there is nothing (else) to worry about. But our sleep is being disturbed. Have any others experienced this and should she being increasing her Epilim dose?

[grahamb]

I have had nocturnal epilepsy for many years and take tegretol (carbamazpine) at night to stop the tonic clonics, but sometimes will increase the dose if it's been a more tiring day or I'm down on sleep. Epilim was the first med I tried and it would stop the seizures for maybe two months but then I would have a much worse simple-partial and tonic clonic than usual, which is why I switched to tegretol. The loss of sleep and increase of seizures can become a vicious cycle. Monitoring daily stress levels and diet could help. Maybe she could keep a dream/seizure diary. Best of luck with this.

[lebasor in reply to grahamb]

Thanks. Are you suggesting that these night time awakenings are simple partials?

[grahamb in reply to lebasor]

That's what it sounds like to me, because of the fact that the spoken assurances can be heard. When I have a simple-partial it usually occurs as I am going to sleep but has happened as a night awakening occasionally. My heart rate increases, and my head jerks to the right (not sure about how the breathing sounds). The tonic clonics I don't realise I've had until I wake up in the morning, and they are sometimes followed by complex-partials where I can go walkabout and do strange things, though I'm not aware that I am, and I doubt it would register if someone spoke to me in that state.

[Adlon57]

I have Juvenile Myoclonic Epilepsy, am on Briviact and Vimpat, I live by myself, BUT I have very vivid dreams, and have been told [when younger] that I shout in my sleep, I also have claustrophobia, which I have told my GP about, [things go very slow and stop around here as far as medical care is concerned, Northern Ireland] 🥱? I am meant to be talking to my epilepsy specialist by phone in three weeks time, the first time since April 2018? 😗I believe I do shout in my sleep, definitely after dreaming, living in a semi detached I feel very embarrassed mentioning it to my neighbours!🙃

[Adlon57 in reply to Adlon57]

Actually since April 2018, I have had one seizure, grand mals, so my meds work, still have the 'dreams', still think it is the claustrophobia is causing them, which has ALWAYS been bad since I was small! Am 65 had the epilepsy since 14. A double bed [grand mal helpful!] and taken off my bedroom door, window is on snip at night [which can make it very cold?] very anti claustrophobic🥴 I should see a "shrink" but those are extremely expensive, not on NHS over here!🙄🥴

[busylife in reply to Adlon57]

I sympathise with you on the long wait to see your specialist. I am also from NI and had my first ever seizure in September 2020, a nocturnal grand mal. The local hospital did all the tests (kept me in so that I would be taken direct from the hospital to Antrim for an MRI scan within a few days as opposed to several months of a wait if they had discharged me.) The scans were clear. They referred me for an EEG, just to do their due diligence, after saying that everyone gets one free seizure and I might never have another one. It took 5 months for the EEG appointment, which I had done in February. They said it revealed "slight seizure activity" and put me on a low dose of Keppra (Levetiracetam, actually.) That cleared up the frequent absence seizures (there's a proper name for them which I forget - focal seizures???) which my husband had been noticing during the 5 months between the grand mal in September and the EEG being done.

However, I had my second seizure, another grand mal in my sleep, in June as a result of which they increased the dosage of Levetiracetam and so far so good. I was told that I had been referred, in September 2020, to see a neurologist as an outpatient but in February they informed me that the waiting list for such appointments was at the very least 4 years, more likely to be 5 years! Even if you are considered an "urgent" case the wait is still 3 years! This is the NHS that is supposed to protect us but instead we had to be locked down and masked up in order to protect it! Sadly, I fear that the NHS as we had known it from our youth (I'm in your age bracket) is no more. I had to pay to see a neurologist privately and even then there was a wait of 5 months.

I hope you get the help/answers you need from your upcoming telephone appointment.

[Adlon57 in reply to busylife]

I have juvenile myoclonic epilepsy, had over 400 grand mal seizures, aged 65 had it since age 14. As you said NHS in N.I. is not the best, been using telephone communication update to them since 2018, pretty hopeless! My 'appointment' to speak to my epilepsy consultant on Friday 15th, first time actually talked to her since April 2018, should be interesting. Most of my epilepsy records were lost "pre 2013", ironically I know more about my condition and progress than ANYBODY as I used to be in regular contact via email with my ex epilepsy nurse, whom I can definitely call a personal friend, those emails my only source. My new consultant/specialist diagnosed me with a drug [everytime I call it or even write it down I get a distinct cold chill up my spine Fycompa🥶an absolute disaster, three suicide attempts, most of 2017 I spent in bed, smashed my rib cage, even now ribs will never fully heal, refracture all the time, {one on my right hand side at the moment} [she was in maternity leave during that year🙄] During the process of medication change in 2018, a double mal seizure, actually in my local health centre, broke my skull, since then in a recent hospital visit, casually told "the next seizure will probably be your last!" [that should be entertaining telling her that on Friday?🥴] she is not the brightest penny in the bottle🥴 My nightmares are due to my claustrophobia, when 8 years old was smothered in a sand dune, my GP knows it, but going private would be the only way, my financial situation has always been poor, essentially I know it and am probably too old now, it's too deeply buried in my cadaver or what's left of it🥴 Actually I have acquired a good friend a personal specialist, [in contact with Guy's in London] since May, I have Schwannomatosis or NF3, a neurological condition, [schwannomas growing on my nerve sheaths] had it since aged 14, I am the only person in Ireland with it, I am in regular contact with her via phone and email, and a GREAT help with my epilepsy as well, she first diagnosed me with the condition back in 2017, after a inspection the year before, had surgery on them a couple of times. [My secondary epilepsy specialist🤗] She has her fingers in many pies, my one bright light of 2021

👍

[Considine]

If I am stressed then irrespective of bedtime I can wake in the night usually at 3am or thereabouts. There are occasions when I wake believing I have had a number of hours sleep and find I've only been in bed for an hour. Our minds are active during the night, I'm currently physically tired renovating an old property and working to a deadline, almost guarantee waking at 3am thinking about the order of jobs the next day or any problems that have emerged. It is difficult to return to sleep.

I have Transitory Epileptic Amnesia with short term memory loss particularly of irrelevant matters such as a tv programme recently watched. I have had two physical seizures both nocturnal the latter resulting in a postererior dislocation of my left shoulder that required surgery.

I have tried various herbal remedies but the one thing that works is a product called Sleepeze sold without prescription by Boots. Two strengths are available 25mg & 50mg. Warnings of not using the product too frequently are advised verbally at purchase and on the information leaflet.

I have found that when I do wake up it does help looking through the thousands of photographs on my iPad, I can do this without disturbing my wife by keeping the iPad at the side of the bed and viewing under tha sheets. It's as if they take my mind off the issues it has been working on.

Best wishes

[Considine in reply to Considine]

I forgot to mention that I am prescribed 500mg of Keppra twice a day and having joined my local Epilepsy group have learned that it is important to take at a specific time twelve hours apart. Having short term memory loss I set my iPhone alarm to ring and take the medication after breakfast and an evening meal. If I'm still eating I hit the snooze button and it will ring 7 minutes later. I have a weekly medication organiser (in effect my own blister pack) so I have a visual reminder to see if I have taken the medication if l can't remember taking it after my breakfast or tea!

[Angie140720]

Sorry to hear of your disturbed sleep. I used to be on levetiracetam but was changed to epilim due to another seizure. Once I stopped keppra earlier this year I also started with night awakening on average about once every week or two. Mine initially were like like electric shocks in the head but have settled into jumps in my head which wake me up. I have also wondered if it is linked to dreams and my brains way of telling me to wake up as my heart rate seems to pick up once awake and then I can be quite alert and struggle to get back to sleep. They are a pain and as someone else has said you get caught in the cycle of sleep deprivation which can cause more seizures but of course when you mention it to specialists they dont seem to acknowledge it might be the medication causing it. I have had a second medication added in to stop the increased absence seizures I got from the sleep deprivation which seems to have helped, I am also on 800mg of epilim a day, 400mg morning and evening. I didnt tolerate a higher dose as it upset my stomach. It might be worth mentioning it at your wife's next review to see what they suggest as sleep is important for you both.

[lebasor in reply to Angie140720]

Thank you. The specialist gave a 500/300 mg split with 500mg in the evening as the three or four past tonic clonic seizures were all in the middle of the night.