Does this sound like seizures or something? (Yawning)

[Murf]

I am pretty new to the site, having posted my story in the Foyer a month or so ago. Basically, had my first ever seizure back in November 2012, when as far as we can tell, I had two tonic clonics a few minutes apart. I haven't had another since

Then in December I started having strange nocturnal episodes.

I have been trying to keep a log of what happens and my husband has also been trying to observe them and check how alert/responsive I am etc. I had 23 nights where I had these episodes between mid December and mid March, but since then they have tailed off to be once or twice a fortnight at most, except the week before my period, when they seem to increase slightly.

They always occur between 4.00 am and 6.00 am and start with me waking up feeling really restless - a bit like restless legs but all over and I suddenly feel very hot. Then almost immediately I get a horrible dready feeling, tingling/buzzing that kind of rises up through my body from my feet, stomach pain and nausea, then really deep, painful incessant yawning that is like a compunction that I can't control and is accompanied with excessive eye watering. (The yawning is not like typical tiredness yawning, it's kind of a whole body yawn that really hurts my lungs and my jaw, with each yawn going on for longer than a normal yawn and then more and more of them back-to-back with no time to breathe in between). This then leads to burning, painful pins and needle type feelings in my left foot/calf and hand/arm which seems to creep up my limb and is really painful, feeling like when you have burned yourself on the oven shelf but all over my hand/arm and foot/calf.

I have had a few longer episodes that reach a point where it feels like my eyes are compulsively blinking, but quite slowly though - not flickering - although this only happens when the 'event' goes on for longer.

I tend to have roughly 3 of these in a row, followed by 3-4 smaller, shorter/quicker ones and am then totally exhausted, often sleeping until lunch time without waking if it's possible (not always possible as a busy mum of 3). The whole thing, usually lasts no longer than 15 minutes from the first longer episode to the end of the last mini-episode.

I feel like I am aware when this is happening, but my husband tells me that he can only get the odd slurry 'yes', 'no' or incomprehensible mumble out of me and apparently last night I just seemed to mumble yes whenever he said anything - although when I am between the smaller episodes I am confused but able to respond to him a bit better.

Does anyone recognise anything about my nocturnal episodes from their own experiences? I can't find much about yawning and epilepsy on the net, so am starting to wonder if this is a sleep - rather than a seizure - disorder.

 

[masterjen]

I don't want to say much and will just through out there: could this be a reflex epilepsy, since yawning is a reflex?? But wait for a more senior member to respond since I'm in the learning stages about seizures myself.

 

[Nakamova]

They sound like nocturnal simple partial seizures, escalating to complex partials. The "horrible dready feeling" followed by tingling, buzzing, nausea, etc." is a classic set of symptoms for for a simple partial. The yawning, confusion and verbal problems are more characteristic of a complex partial.

 

[BrandiBrat]

Hi Murf!
I have right temporal lobe epilepsy and have complex partial seizures that effect me approximately 80% nocturnally. This creates a pretty interesting atmosphere in my house at night time! I'm a single mom and one of my daughter's duties is to keep an eye on me at night because I'm a wanderer from about 2am-5am. Luckily I've never left the house but I do strange things such as open/shut drawers, hide things that my brain seems to think are important (printer ink, fish tank filters, forks, weird things like that). You say that you yawn and my daughter tells me that I smack my lips and stomp my feet loudly. I also slam the drawers louder than normal. I act as though I'm chewing gum. From what I've read, repetitive mouth movement is normal in complex partial seizures and perhaps yawning (even an exaggerated yawn like you describe) is a normal movement. I'm not sure about the pins and needles pain that you describe. I don't feel any pain when I'm in a seizure because I'm in a state of unconsciousness when I'm in a complex partial nocturnal seizure. The next morning she tells me what I do but I have no recollection of it. She will ask me a question like "What is your name?" and I will respond, "HUH?" Or, she will say, "Do you want to go to the moon, Mom?" and I will respond, "HUH?" I'll give her the same answer every time. Sometimes the next morning I'll wake up with unexplained bruises or wake up sideways in the bed and I'll know I wandered.
I recently had a 72hr EEG done and my neurologist said results showed I had seizure activity approximately every 10 minutes lasting a minimum of 30 seconds. She gave me a referral for a VNS implant so hopefully it will get under control soon.
When this happens to you, do you wake up with a headache and are very tired the next day? I'm usually wiped out from my brain not getting the rest it needs.
I hope you get it sorted out..

 

[Murf]

Thank you for responding everyone.

Nakamova, you very kindly responded on my introduction thread and at the time I was hoping I could get some private healthcare and a better neurologist. Unfortunately this isn't the case, we simply can't afford it - if we can afford the payments, the excess on the policy is too big. The neuro I saw last time was dire and said these episodes bear no relation to epilepsy and even suggested the t/c didn't happen because I was alone at the time, despite my husband getting to me straight afterwards and seeing the aftermath, not to mention the bruises. I have no chance of seeing anyone else though, as we are restricted to our local health authority and you basically get what you're given.

So, I have been trying my best to log everything and keep an accurate record of what's happening in the hope of someone eventually making some sense of it all. It's either that or give up, sign myself off the neuro's list, live with it and hope it doesn't get any worse.

BrandiBrat, I can sort of remember my episodes - all very fuzzy, I know it's happened and have been able, with my husband's help, to piece together the symptoms from memory over the past couple of months. I do know that they always follow the same pattern and progression, but that some don't seem to quite make it all the way through to the end and on those occasions I don't get to the pain or the blinking.

I don't have a headache in the morning, but am really groggy, confused and exhausted every single time and feel like I could sleep the whole day if I was able. I am becoming increasingly exhausted from the cummulative lack of sleep and post episode exhaustion as well, which makes it harder to function during the day. Embarrassingly I burst into tears this morning when I realised I had to get up and get the kids to school, it just felt like there was no way I could make myself do it. Fortunately my husband made himself late for work and got them all ready, so I only had to shuffle across the road and back before coming home and curling up again.

My initial EEG was clear, but was done two months after the t/c event in the middle of the day after a two week holiday where I got to rest and be totally looked after - so not really indicative of the times I tend to have episodes, which tend to be around stress and sleep deprivation and always at night.

Good luck with your VNS, I hope you will be able to get a really good night's sleep when it's in place.

 

[Murf]

Just realised I fluffed my thread title. It should have read 'Does this sound like seizures or something else?' Oops, I'd insert a blushing smiley if I knew how!

 

[BrandiBrat]

I'm so sorry about your experiences! And I agree with Nak it sounds like you're having simple seizures leading to complex. I have tons of simple seizures (according to my neurologist and EEG) at night and it's the complex that make me wander. I know how frustrating and exhausted you must be. When do you see your Dr next? Keep doing what you're doing with the seizure diary and the note taking and I do hope you will get some relief soon. Big hugs coming your way!!

 

[Murf]

Thank you BrandiBrat.

So are you thinking the first part is the simple seizure and when it leads on to the deep yawning, pain and blinking it's gone on to become a complex partial? That makes sense actually, because it's the end part I have trouble remembering - although I'm not sure how I would remember the burning/tingling pain and blinking if it was complex, so then again, maybe not? It's all so confusing.

I don't have a date for seeing my neurologist again as yet. I have my 5 day ambulatory eeg booked for the middle of next month, but am going to have to move it, as I had forgotten I am going to be away for half of that week. That will probably push it back a month, knowing their booking system and then, going on past experience, I will either get a letter telling me it was clear and they will review me in 12 months or they will book me an appointment about 6-8 weeks after the eeg.

 

[BrandiBrat]

Yes, that is what it sounds like...it is too bad you have to move your Ambulatory EEG back a month. It could still be complex with partial memory, though. When I have some cp's I have trouble seeing and comprehending my surroundings. Although I smack my lips, you blink your eyes. It's very common. Your Amb. EEG will tell the story, I'm sure

 

[Murf]

Well, after getting a letter earlier this week confirming my EEG - and me realising I was away that week and would have to postpone - I today received a letter from the locum neuro, via my GP, to tell me my EEG has been cancelled, as I do not fulfill the critera.

The letter says I will be reviewed in the outpatient clinic, they will review my history and then 'arrange further management plan'.

I was surprised to receive the letter, but am not surprised by the Trust's decision. I felt myself that an ambulatory EEG on a random week that may or may not be the week before my rather irregular period (not least of all because they've based my May dates on the dates from my cycle in March) was a bit hit-and-miss.

This week has been, well, rather active and I do think I am premenstrual, so it does seem there is a hormonal component and the week before my period is the most likely time to catch one happening - but how they're supposed to do that when I can't predict my periods is beyond me. I have also been under a lot of stress this week and extremely sleep deprived.

Dh decided that when I had a nighttime episode this week he would flick on the light so he could get a better idea of what happens and feels he has a better handle on what happens during an episode as a result.

He said that my pupils weren't hugely dilated, but were appeared sort of fixed and didn't appear to respond to the light going on. He also said that he's sure I was completely unresponsive to him, but only for a very short space of time - 30-45 seconds to a minute at most. Oddly I remembered being on my side on the bed and seeing his face loom in front of mind (although it looked disproportionately large for some reason). I knew he was speaking to me, but couldn't make sense of what he was saying and couldn't respond either.

I have also noted that on each of the nights I've had an episode this week, I have had a really odd headache in the rear quarter of the right side of my head even before I go to bed. It's like a fizzy/buzzy headache, crossed with a kind of odd pressure feeling. The best way I can describe the fizzy/buzzy feeling is like a smouldering electric cable, but I know that doesn't really make any sense to anyone but me.

So, I have no idea what will happen now. There is every chance the neuro will shove me onto 12 month review appointments and ask me to keep a diary in the meantime. If not, given his attitude at the last appointment, I wouldn't be surprised if he doesn't say there isn't anything else he can do and discharge me.

Dh and I have decided we are going to do what we can to try and work out what's going on ourselves. First of all we are working on improving my sleep hygiene, by instigating a regular bedtime and morning routine. We are also looking at my diet and giving it a major overhaul, as I had almost a full year of really good health last year following on from my initial TIA like episodes, coinciding with clean eating and circuit training that resulted in significant weightloss. (My health deteriorated after a botched lumbar puncture as part of the MS investigations. I ended up flat on my back with the dreaded LP headacheds and severe backpain for almost two weeks and my health has gradually declined ever since - ultimately ending up with the T/C in November.)

I can't do the exercise to the same extent now, as I am too debilitated and have had an injury in the meantime, but I am going to do as much as I can to clean up my act generally and hopefully build back up to it as I regain my strength.

 

[Nakamova]

So sorry that you're getting the runaround from the docs. I hope that being proactive in your overall health will help. If you feel like your seizures may be related to your cycle, try avoiding foods that contain or stimulate estrogen, and go for foods that are "anti-estrogenic".

 

[Murf]

Thank you Nakamova.

I hadn't thought of that, but in a way am planning to, as I'm going back to my old way of eating, which having just read the book, I now realise is the same as the diet in Jillian Michaels' Master Your Metabolism. So, nice to get the confirmation that I was doing the right things and also gives me some hope that getting back in line with diet and exercise might get my neuro stuff under control again.

Definitely getting signs that it's hormone related now, monthly feels imminent and another episode last night, that's four out of five week nights this week, plus a migraine coming on as I type. Think I'd better get off the computer actually.

Think I'll go back and re-read the section of the book on estrogen before the migraine gets a proper hold on me.