Night Terrors - Waking Terrors??

I'm so sorry to hear this, Richard. Is your bitten tongue bad enough to justify a visit to your local A&E (or ER if you're in the States)? This would be the best course of action for you right now, but your wife should accompany you and you should both make sure that you tell them the whole story. It's likely they'll get a neurologist to see you immediately.

Richard, you can't go on trying to tough this one out.

Last night's experience is to some extent in line with night terrors. It's rare to have any kind of control over what goes on, and some people do indeed have no memory whatever of these episodes.

However, I'm very concerned about the bitten tongue. This isn't normal in night terrors and suggests some kind of seizure, which is what I was a bit worried about from the start. This still isn't the end of the world. There's a stress-related condition called pseudo-epilepsy, which causes what are to all intents and purposes full-blown epileptic fits, but without any evidence of a focus in the brain. It's treated with a mix of medication and psycho-therapy.

There's no need to panic, but you must get yourself seen asap.

So sorry to hear that Richard. I know you got fobbed off at the doctors but please make an emergency appointment and fully explain what's happening to you. Don't wait for your Thursday appointment go today if you can. Please let me know how you get on xxx

praying for a resolution for you xxx

Thanks Lily... I guess I've learnt a lesson last night. This is NOT going to be easy, I won't be able to control or beat it by being strong, and there are probably going to be more downs than ups.

I've been to the doctors already this morning and am being referred to a sleep clinic and a neurologist - it could take a couple of weeks though, so my doctor will speak on the phone this afternoon with a neurologist in order to find out what he can best prescribe for me - he doesn't want to prescribe anti-psychotics without advisement and, to be honest, I don't want to take anti-psychotics unless 100% necessary.

I guess this will be a long haul for me and my family...

Thanks Lorrain, I've been to the doctors already this morning and am being referred to a sleep clinic and a neurologist - it could take a couple of weeks though, so my doctor will speak on the phone this afternoon with a neurologist in order to find out what he can best prescribe for me - he doesn't want to prescribe anti-psychotics without advisement and, to be honest, I don't want to take anti-psychotics unless 100% necessary.

I was happy with the doc this morning, I think the burns across my face and nose drove it home that this is serious, but he's now doing everything that he could/should have done on Wednesday.

 

Pleased your now getting the help and annoyed that you wasn't helped on your previous visit. Do you recall how you burnt your face and bit your tongue? Please stay strong it will get sorted albeit a late start. Please let me know what's decided for you xxx

They are carpet burns Lorraine, it's coming back more clearly now, and I remember trying to escape by burrowing my way through the floor with my face. I guess I bit my tongue during that unsucessful process.

I asked my doctor something this morning, which he dismissed. I'd like to ask you too, if I may:

When i had the episode in the bathroom, when I blacked out when awake, it started by me coughing badly. Now, I DO have a really bad cough, my throat is raw and my phlegm is bloody at the moment, and when I dry cough I get a little "starburst" in my head. I was coughing very badly last night as well, so could this "starburst" be a trigger for an attack?

Thanks as always xx

Hi Richard

not liking the sound of your doctor at all! How he dismissed this concern is beyond belief! If you are bringing up phlegm that would suggest an infection. Probably the blood is from coughing too hard. The doctor should have addressed this. The fact that you blacked out on your first episode makes me think there is an underlying health issue eg virus or similar as you developed this cough. The body usually blacks out or faints if it's unable to cope with what's going on eg.blood pressure.fear virus etc. Also night terrors begin at a time of stress. I didn't recognise I was stressed an put up with the night terrors for a very long time. They only completely stopped when I started taking antidepressants in June of this year. Keep me posted and please get firm with your doctor xx

That's interesting, Richard. The only thing I can think of is that it's normal for blood pressure to rise when coughing. What exactly do you mean by a starburst in your head? Seeing flashes of light? Or something else? I suppose it might just be the rise in BP that triggers the attacks.

So sorry to hear about trying to burrow through the carpet. I know exactly how that kind of thing happens in night terrors, and I see now how you could have bitten your tongue without it being a seizure. However, that doesn't mean you don't need a full neuro check-up. A bitten tongue should always be taken seriously.

As someone with some medical experience, I can see no reason for prescription of antipsychotic drugs in a case like yours, neither am I convinced they would work. This is nothing to do with schizophrenia, which I suspect is the line your GP is following. Doctors in general really can be breathtakingly ignorant about sleep disorders.

As a young student nurse, 50 years ago, I saw a GP about my other sleep disorder (having not started getting night terrors at that time). This was the REM sleep disorder, which caused me to wake paralysed and subject to truly terrifying hallucinations - something that's continued throughout my life, though I can cope with it now. It started, quite typically, at a time of stress, in the run-up to my final exams. I'd never heard of this condition, so didn't know what was happening to me and was terrified. I was sent to see the GP in charge of nurses' health, who told me it was the onset of schizophrenia and referred me to a psychiatrist immediately. Fortunately, the psychiatrist knew better.

Antidepressants, on the other hand, are often quite helpful for night terrors, and can be the treatment of choice. My original caveat remains, however. Regardless of what your doctor says, if you're prescribed this group, start on the lowest possible dose and work up from there as necessary. Check the notice in the packet, which will mention which group your medication falls into.

As you've bitten your tongue, there's also a possibility that you'll be prescribed anticonvulsants, at least for the time being. These can have nasty side-effects, but none of them mental, so it's quite safe to take them at the recommended dose.

In the meantime, it's probably best to continue sleeping apart from your wife, and taking any other precautions (e.g. locking the door etc., as already mentioned) that would slow you down and give time for the attack to wear off.

And it's important that when you get to the neuro or sleep clinic you really tell them everything - including details like the starburst. While you're waiting, it would be helpful to keep a journal of the good days as well as the bad. This could help you identify possible triggers and will also ensure you don't forget to pass on something that could be important.

You can still employ all the other measures suggested here, especially trying not to get too scared - though I know from personal experience how hard that one can be. (Don't forget I'm the gal who nearly jumped out of the window.)

Believe me, there is life after night terrors. Although my REM sleep disorder continues to haunt my nights, it's been more than 20 years now since I had a serious night terror. That's why I can now laugh at some of the unbelievable things I did during these episodes. But I do understand that it's really not funny when you're in the middle of it.

Stay in touch if you find it helpful.

Lily

Thanks Lily, everything both you and Lorraine are saying is helpful - some of it I will tentatively dismiss as non-relevant to me, but hearing from people with their own experiences is helping me try to get a handle on all of this, which clearly isn't an easy thing to me.  

One question I will never get an answer for though, is "why me?!!".

Starburst - you know in the cartoons when someone gets hit in the head, he sees stars? Well, that's what I mean, athough the stars are more like pinpricks of light, and I get a "buzzy" sensation (not pleasant) in my head. This is due to the dryness and ferocity of my cough at the moment, I just wondered if it could be some kind of trigger.

This is all so sudden, the first episode was, I don't know, about one week ago, and suddenly it's controlling everything i do. The journal is a very good idea, i'll start it today, something is happening just about every night, so logging it could be important to the specialist I eventually meet.

Right now I'm waiting for a call from my doctor, to tell me what he's going to prescribe... I don't like the idea of anti psychotics or anti-depressants, but I guess it will be one of the two... probably the second option.

Thanks as always 

Rich

Dear Rich,

Perhaps the better question would be: "Why not me?" I think we can apply that to every situation in life, not just health problems. I'm afraid the answer is that rather coarse two-word slogan you sometimes see on tee-shirts, the second word being "happens". But then I expect you already knew that.

Yes, that's what I thought you meant by "starburst". This is caused by a momentary rise in blood pressure. It probably isn't triggering your attacks, but just might be. That's why it's important to keep a journal. We all think we remember things accurately, but it can be quite illuminating when we read a journal of this type a couple of months later.

It's normal that you should feel this is controlling your life at the moment. You'd feel just the same if you'd had a serious accident or other illness. It's inevitable that you'll go through a period of anger and bewilderment. And I suspect that it's particularly hard for you because you're someone who's used to always being "in charge". I was like that too - still am, though a lot of it has been knocked out of me by life. I have to say that the various times in my life when the rug's been pulled from under me have been quite salutary in the long run. They made me realise I was never really in charge of my own life in the first place! If you stop and think about it, how could any of us be?

I wouldn't worry too much about taking anti-depressants for a while. As Lorraine says, they can really help with sleep disorders. If this is what your doctor prescribes, limit yourself to the lowest possible dose you can get away with, but do take them every day, not just when you've had a bad night. Stopping and starting antidepressants can cause mental and physical problems, which is another reason it's a good idea to start as low as possible and work up gradually. This is even more true of antipsychotics, which should never be stopped abruptly under any circumstances. Amazing though it might sound, your GP may have no knowledge of this. Well, maybe not even surprising in the case of your GP, who - as Lorraine says - doesn't sound up to much...

Hang in there. There will be a solution.

Lily

Richard you are more than welcome and I really hope you keep sharing your journey with us xxxx

Well, Rich, acceptance of things the way they are is in itself a form of positivity! That way, you can start doing something about it.

So glad to hear they're finally taking you seriously. This doesn't automatically mean there's something seriously wrong with you, btw. This could still be an extreme reaction to bottled-up stress. But it's always best to get a tongue-biting episode thoroughly investigated. Just make sure that when you go to A&E you get through to them why you're there. Communications in the NHS aren't always the best!

Delighted too that the neuro isn't going to prescribe without seeing you. This way you'll get the right medication, not just something your GP has looked up from a list.

I hope the birthday celebration relaxes you enough for you to have a peaceful night. Good luck for tomorrow, and keep us posted!

Lily

 

Hi Richard

how was your night?

Thinking of you x

Hi Lorraine, had 2 more episodes last night, neither was terrible, and I managed to stop both before they developed too far. At hospital now, waiting in the neurology department.

Cheers x

Glad you managed to get them to take you seriously. Good luck!