Stay awake and risk a seizure?

[Lotte]

Hi,

Sorry to jump straight in to ask questions, but I'm pretty desperate.

I always know when I am going to have a seizure (apart from once which just happened in seconds) because my eyes start rolling and I cannot control them and my teeth grind.

My teeth started to grind before I even got to sleep tonight (I am a serial teeth grinder when I'm asleep!) But no seizure, they usually happen within minutes but it hasn't tonight. I have to be up in a couple hours anyway but the last sleepless night I had I had a seizure the following day. I dread the thought of one tomorrow. If I even attempt to go to bed I know I won't sleep now...is there any way I can avoid a seizure tomorrow?

I have around 4-6 seizures a month, and they usually happen in clusters (?) that last around 15 minutes or so, longest one I had was 25 minutes, but I go in and out of consciousness which is why I assume they are clusters?

I finally see my neurologist in October as the hospital lost the first two referrals (made in March!) I have had MRI and EEG, MRI was clear EEG showed abnormal brainwaves. They also discovered renal problems...they gave me a list of five possible illnesses, so I have constant blood tests.

My hospital is pretty rubbish, and have just left me to have more and more and longer seizures.

I do not know what the triggers are as I have experimented and there is no pattern. Oh, I am sorry for the essay, just wondered if there is any way at all I can avoid one tomorrow after a sleepless night?

Or is that a really stupid question? I really know nothing at all about what is happening to me. Sorry for my ignorance.

Thanks, if you got this far!

 

[N Sperlo]

I wouldn't say it is a stupid question. It is hard to answer, though. None of us are experts and none of us know what your triggers are. We are all different, have different types of seizures, and different triggers.

Always be prepared for a bad situation. Get plenty of sleep, eat a healthy diet, avoid stress... People here could go on with suggestions, but they may not help. When you see the doctor, hopefully you'll get better direction. Good luck.

 

[Belinda5000]

It's not so easy to avoid stress, I don't care what people say.I have a very stressful life.Anything can bring on a seizure with me.:agree:

I even have docs who freak when I seizue.

 

[Lotte]

Thank you both for replying.

I did have a seizure and now on my second sleepless night.

My friend was here and panicked and called an ambulance (I hate them being called and tell people not to unless they last too long) The paramedics when I came round said it wasn't epilepsy because I was semi-conscious and that it was a non-focal seizure.

I have had countless seizures in the last nine months and EEG showed abnormal brainwaves. The P'medics said I should be on medication already. I see my neuro in 9 days.

I am so confused...I know no one can diagnose what seizures I am having but what do they mean by non-focal...does that mean it's not coming from the brain? I have renal/kidney problems could that be causing the seizures?

My hospital really are rubbish and I'm starting to wonder if I should keep going to any appointments and just give up. The p'medics were so conflicting in what they said...they even said that because I didn't lose bladder control it wasn't a seizure! Then they said again I should be on meds and to ring each time. I had a very strange feeling before the seizure, which I usually get but this one was odd and lasted ages.

Again, sorry for the novel. I'm starting to feel like a fraud because of what the p'medics said.

Thanks.

 

[Tez_20]

Hi,

Sorry to jump straight in to ask questions, but I'm pretty desperate.

I always know when I am going to have a seizure (apart from once which just happened in seconds) because my eyes start rolling and I cannot control them and my teeth grind.

My teeth started to grind before I even got to sleep tonight (I am a serial teeth grinder when I'm asleep!) But no seizure, they usually happen within minutes but it hasn't tonight. I have to be up in a couple hours anyway but the last sleepless night I had I had a seizure the following day. I dread the thought of one tomorrow. If I even attempt to go to bed I know I won't sleep now...is there any way I can avoid a seizure tomorrow?

I have around 4-6 seizures a month, and they usually happen in clusters (?) that last around 15 minutes or so, longest one I had was 25 minutes, but I go in and out of consciousness which is why I assume they are clusters?

I finally see my neurologist in October as the hospital lost the first two referrals (made in March!) I have had MRI and EEG, MRI was clear EEG showed abnormal brainwaves. They also discovered renal problems...they gave me a list of five possible illnesses, so I have constant blood tests.

My hospital is pretty rubbish, and have just left me to have more and more and longer seizures.

I do not know what the triggers are as I have experimented and there is no pattern. Oh, I am sorry for the essay, just wondered if there is any way at all I can avoid one tomorrow after a sleepless night?

Or is that a really stupid question? I really know nothing at all about what is happening to me. Sorry for my ignorance.

Thanks, if you got this far!

Hi Lotte,
Firstly where your seizures are concerned and the grinding of your teeth...i'd ask to get refered to an ENT as you may have TMJ Disease involvement with your seizures as I also have thos and wear a mouth shield at night with spliniters so it doesn't move if you have a seizure.

None of we can say when a seizure will actually kick off as we can have the senses or smells etc but when they actually happen is to when the cepters in the brain trigger.

I've had seizures one after the other but my hubby knows as long as they stop in between not to get an ambulance but if it's continuous convulsing then they have to be phoned as my heart can't cope and then I go into coma's....then it's wheather they attend me at the time as my temporal-lobe epilepsy as put me on the danger list regarding hurting ambulance drivers, so they can actually leave me, with helping me....it's one hell of a situation i'm in.

Your asking no stupid questions and with members experiences all we can offer is good advice

 

[joey]

I can finally feel my seizures coming ahead of time. I personally use clonipin as needed. I take them when I know im going to seize. If I dont ill have a full blown attack. My tongue will be chewed almost in half if I have seizures. I take depakote and dilantin twice daily. I dont recommend that you take clonipin when you have these feelings but it works for me.so ask your dr maybe you. as many questions as possible.

 

[Lotte]

Hi Tez_20 and Joey,

Tez_20 My dentist is getting me a new mouthguard made as I ground the other one right through! She said they will make one that I can wear in the day time as my teeth are grinding straight, I don't want to end up with really short teeth! I've not heard of TMJ? But see my neurologist on Monday and the nepthrology people the week after so I am hoping they will tell me what's happening.

Do you have any consciousness when you are convulsing? I'm sorry that you are in such a bad situation, I don't know much about epilepsy thus far I'm afraid so may I ask why it puts you in danger of hurting the paramedics? I know there are up to 30 types of seizures? And each produce such different symptoms and reactions, but my hospital tell me nothing (not sure if it's a uk thing...they don't tell patients what's going on unless we insist in a lot of cases)

I am starting to think my seizures are connected with whatever is wrong with my kidneys/renal system.

May I ask what you are like on the days in between seizures? I have about 2 good days out of 7, the bad days I am in such brain fog and feel such hopelessness, it feels like I have no control of my brain at all. I can go from manically happy to manically low in hours and simple tasks are literally not done as my brain feels like it's not capable.

Joey, I am also on Klonopin (called Clonazepam here) I have been for 5+ years, they put me on them for panic attacks starting at 0.5mg and with tolerance I ended up on 12mg a day! I have had two cold turkeys and I don't think they have helped, and am now on 3mg daily. I also take extra now if I feel a seizure looming. But my body is so used to C'pams that I don't think it does much. I hate benzo's, but know they help some people.

That's bad about your tongue, it must be so painful to eat or drink afterwards, well all the time?!

I will ask the neuro as much as possible on Monday. one of the consultants refused to tell me about the abnormal brainwaves on the EEG (he said I wouldn't understand!) But I think the neuro will say more.

Thank you both for replying.

 

[joey]

I always seem like I should ask as much as possible I can't eat for a week afterer seizure and I am unconscious throughout episode. No weird dreams or anything just darkness. I can go on and on. I like talking to others that have an idea what I'm going through. This place is perfect for that reason alone.

 

[j.j.]

During my seizures I am not unconcious, I can hear and see but can't speak. I have complex partial seizures.I think you should ignore comments by p'medics as they are not trained to diagnose what is wrong with you.I had a similar problem with different opinions, my Consultant reviewed my case and gave me diagnosis of ep

 

[Tez_20]

Hi Tez_20 and Joey,

Tez_20 My dentist is getting me a new mouthguard made as I ground the other one right through! She said they will make one that I can wear in the day time as my teeth are grinding straight, I don't want to end up with really short teeth! I've not heard of TMJ? But see my neurologist on Monday and the nepthrology people the week after so I am hoping they will tell me what's happening.

Do you have any consciousness when you are convulsing? I'm sorry that you are in such a bad situation, I don't know much about epilepsy thus far I'm afraid so may I ask why it puts you in danger of hurting the paramedics? I know there are up to 30 types of seizures? And each produce such different symptoms and reactions, but my hospital tell me nothing (not sure if it's a uk thing...they don't tell patients what's going on unless we insist in a lot of cases)

I am starting to think my seizures are connected with whatever is wrong with my kidneys/renal system.

May I ask what you are like on the days in between seizures? I have about 2 good days out of 7, the bad days I am in such brain fog and feel such hopelessness, it feels like I have no control of my brain at all. I can go from manically happy to manically low in hours and simple tasks are literally not done as my brain feels like it's not capable.

Lotte I wish you the best on Monday with your neuro and please update we but regarding TMJ Disease the ENT department deal with that which your under and really you should have had your jaw x-rayed to check this out with the grinding of your teeth.

This link explains about TMJ Disease (Temporomandibular joint)

http://www.patient.co.uk/health/temporomandibular-joint-disorders

Lotte I have no consciousness when having a grand mal seizure at all and with my temporal lobe they send me into autisms where I can't remember a thing what I've done....I do suffer from internal bruising now from the Grand mal as times gone on and they ran deep x-rays to find out the soreness to my body.

The brain surgeon I was under showed me a list of the rarest seizures to the commonest ones and theres 135 different forms of seizures, as I was shocked and Temporal lobe is the rarest one...with this seizure my mind goes into a state of blocking off the present and what's going on around me but my actual brain and functions carry on...it's like being in a trance and opening your eyes to what you may have done.
Regarding the paramedics my hubby called them out as I was in a bad grand mal but apparently I came out of that and went straight into a temporal lobe...he told them the situation and to be careful and I lashed out without knowing and hit the ambulance man...I came around properly in hospital and the police was there ready to press charges for assault...when my hubby explained the situation and my records was looked at, they didn't press charges but put me on a dangerous list for paramedics to either treat me or leave me to how they feel.

Lotte what's causing you to have problem with your kidneys and renal system? if you don't mind me asking....as I also suffer with organ trouble ontop.
Sounds like fogginess you've got but also slight depression hanging about for you to be up one minute then drop...with me seizures occur regular in a week as they've never been able to control them to a steady level and besides those I cry a fare bit with depression and ontop cervical spondylosis driving me mad with my hip and joints and the constant seizures make it more painful...I live on painkillers daily...I have Muscle Atrophy / Todds palsy another form of seizure and very bad circulation from DVT which nearly killed me.

Lotte just ask away if anything I say helps you understand seizures more

 

[Tez_20]

During my seizures I am not unconcious, I can hear and see but can't speak. I have complex partial seizures.I think you should ignore comments by p'medics as they are not trained to diagnose what is wrong with you.I had a similar problem with different opinions, my Consultant reviewed my case and gave me diagnosis of ep

Hi j.j,

My hubby did try to explain at the time and for then to watch themselves but took no notice, so i'm now registered on the dangerous list which I've stated to Lotte.

Well at least you know what you've got properly with the consultant stating it

 

[Tez_20]

I always seem like I should ask as much as possible I can't eat for a week afterer seizure and I am unconscious throughout episode. No weird dreams or anything just darkness. I can go on and on. I like talking to others that have an idea what I'm going through. This place is perfect for that reason alone.

Hi Joey,

I'm totally unconscious in a grand mal seizure but it takes me a couple of days to settle my stomach from cramps...do you have that mate because if so that's hat may cause the eating issue

 

[N Sperlo]

I'm starting to feel like a fraud because of what the p'medics said.

They are paramedics, not neurologists. Quite frankly they have no business telling you weather it was an epileptic seizure or not. They have no clue of the complexities of seizure disorders.

Don't let what they say effect you.

 

[Janellie8]

I can finally feel my seizures coming ahead of time. I personally use clonipin as needed. I take them when I know im going to seize. If I dont ill have a full blown attack. My tongue will be chewed almost in half if I have seizures. I take depakote and dilantin twice daily. I dont recommend that you take clonipin when you have these feelings but it works for me.so ask your dr maybe you. as many questions as possible.

What is clonipin?

Janellie