Night Terrors - Waking Terrors??

Sorry just see your update.

Please stay in touch xx

Hi Rich,

Really glad to hear things are looking up. I'm just wondering... you said a few days ago you'd put yourself up to max dose of clonazepam, which I can fully understand given that you've a business to run so you needed some sleep. But I'm still concerned about you being on high doses of a benzo. These things can be hell on earth when it comes to trying to get off them. Have you tried a very small reduction? It might well be that now you're not expecting to have a terrible time when you lie down to sleep, the attacks won't be as bad anyway. There can be a big psychological element in most sleep disorders. And hopefully your cough - which was clearly triggering attacks in some way - has been dealt with now. All this means that you might be able to cope on a lower dose. But don't stop altogether and if you do want to reduce, go very slowly.

Look, I'm going to play the old lady card here, using my grey hair and delightful eccentricity - or infuriating bossiness, depending how you look at it - as an excuse to go around saying outrageous things to young people.

So...

I know you said a few days ago: "I am very confident in my strength to beat any addiction that may result from pills". Hmm... You also said a few days before that: "...tonight I fully intend to batter this 'thing' into submission"; followed the next morning, after a particularly bad NT, by a heart-rending: "How can I control or beat this if I'm unaware of it?" Plus you told us: "...if it's the case, I'll quit smoking overnight", "it" being proof that your attacks were related to coughing fits. Have you quit smoking overnight?

I do realise how hard it is to quit any addictions. I admit I don't sleep as well if I haven't had my couple of glasses of wine with dinner. I was lucky enough to be turned off smoking for life, having lived in one room with two chain-smoking parents till I was eight. OK, OK, cue Michael Palin: "That's nowt, we 'ad to live in shoebox an' there were 15 on us"!

But seriously - please don't under-estimate the difficulties of benzo withdrawal. I volunteer on a crisis line and sometimes speak to people even older than me who were prescribed benzos back in the 60s and 70s, when they were handed out like sweets, and who are in utter despair because they still can't get off them. Try and keep to the minimum dose that will allow you to get a reasonable night's sleep.

That's an interesting hypothesis raised by Parky today. I'd never heard of the DaTScan till I googled it just now. Hardly surprising, since my neuro nursing experience was in the late 60s/early 70s when we didn't even have MRI technology! I see it doesn't specifically pick up Parkinson's, just dopamine deficiency in the brain, which can indicate other conditions as well. Well worth bearing in mind if the MRI and EEG don't turn up anything special (which will quite likely be the case). On the other hand, there's no urgency as Parkinson's, like the other diseases the DaTScan could pick up, are not actually curable and are managed by treating the symptoms. It therefore doesn't make a lot of difference whether you start treatment sooner or later.

I hope you continue to have more peaceful nights.

Lily xx

Hi Lily, I see you've pointed out a few places where I've already had to "eat my words" , but without the confidence and the intention to win, winning will never happen (even though you can't win all the time). But I really do get your point, a very valid one. With the smoking/cough... I'm not quite convinced, it's very confusing and the doctors are a little dismissive of my theory, so I'm wathcing it carefully, and analysing any changes in my feelings/head when i cough. IF it is proven (to me) that a cough is a trigger for this, then I will quiet smoking in order to minimise the chances of getting another cough. RIght now my cough is improving but is still here, and I've had 3 relatively NT-free nights. 

The Benzos - you know a lot more than i do about these, and about Benzo addictions, but right now I've considered the options and am sticking to the dosage advised by the neurologist. who has also said i can double the dose if it becomes ineffective. The dosage IS working, apparently, so I'll stick to it. I discussed this with my wife yesterday, who agrees than lowering the dosage is not the best thing right now. Lesser of two evils and all that.  I'm still confident that i can comfortably beat an addiction, because I will always be aware of it, it's not a blackout, or an NT, it's an addiction, very different.  I am an incredibly stubborn, pig-headed and frustrating individual (I like to simply say I'm strong), and I'm ok with this. I hope i'm not proved wrong.

I agree regarding the DaTSCAN, it's one for down the line, something I would bring up to the doc after the MRI, EEG and Sleep Clinic.

Cheers

Rich xx

Hi Lorraine, I just posted an update a few seconds before you posted!  See below:

Hi everyone, sorry i've been absent for a few days with no updates, just been very busy trying to get back on track with work and everything, I really had no idea how much I had ignored my work for the first week of this "experience" and it became a priority.

Since my neurology consultation on Saturday, and going on to clonazepam, it has improved dramatically. The first night I had a night terror, but with less terror than usual, and since then i've slept much better, but am still having very mild attacks - waking up feeling lost and disorientated, but with no activity, full awareness, and no feeling of terror or needing to escape. a massive improvement.

Just waiting on the MRI and EEG now, to see if they can come up with a reason.

Cheers all xx

Hi Richard

just checking in. How are you?

Lorraine x

Hi Lorraine,

It's been ok since last Saturday, mainly very mild terrors, more disorientation than anything else. The last two nights have seen a slight worsening though, I've found myself jumping off the sofa again, still without complete terror, but with the onset of panic.. my cough is almost gone now, so my theory regarding the cough being THE trigger is probably wrong, although I still believe it is A trigger, maybe one of many possible triggers.

Feeling slightly demoralised again, with it getting slightly worse again, plus after a decentt few days of reasonable sleep I am again becoming ridiculously tired, I'm waking up far more often again. 

Strangely, the last two evenings I have felt less settled on the clonazepam, which has coincided with the two worse nights I've had.I hope my body isn't already becoming used to these pills, it seems too quick to me.

I've got my first outpatients appointments with the neurology department on Wednesday, so we'll see what happens then.

Hope is eternal, as they (who?) say... I'm young(ish), strong, and stubborn as hell, and am holding on to my optimism that I WILL beat this somehow, just not sure how yet. I HAVE to beat this, I can already see that it is a potentially life-changing condition, one that I cannot afford not to beat - my work entails 100% from me, and I haven't even got close to 50% since it started.

Fingers crossed...

Cheers xx

Bless you Richard

such positive approach you have. If you get chance let me know how your appointment goes on Wednesday. Thinking of you xxx

Thanks Lorraine, it's really just a matter of "needs must". My business, and family, relies heavily on me, and therefore something like this needs to get the hell out of my life and leave me to get on with "the plan"... I'll do whatever it takes - even if it means relying on pills for the rest of my life, it's a better option than trying to stay on top of everything when at only 50% of productivity.

Speak soon xxx

 

Hi Richard

so pleased you had a better night

what a shame you have to wa so long for your appointment. i hope you dont have to wait too long for your scans. Thank you for the update andplease keep us posted

god bless xxx

Hi Rich,

Just back from five days in London. Don't have a smart phone or any gizmos like that so wasn't able to keep in touch.

So sorry to hear things haven't going quite as well as they were. As you say, this might be because you're developing tolerance for clonazepam. That's the trouble with benzos. However, it could also be that your attacks aren't seizures after all, in which case clonazepam wouldn't have much effect anyway. As sleep disorders are heavily affected by our mental state and attitude, it might be that the initial effect was just placebo. However, whatever you do, don't abruptly stop the clonazepam now. If these attacks are seizures, stopping will make them much worse.

​I'm guessing that they're planning to do the investigations before you see the neurologist. Hope so anyway. Is there any way you can ask your GP whether he/she can speed up the process? I'm guessing you don't have private health insurance, so can't jump the queue.

Just a word of caution. I know this all sounds a bit psycho-babbly, but it's not always a good idea to be too aggressive ("I HAVE to beat this...") when dealing with your own unconscious. Even if they find something on the MRI and EEG - which I suspect they won't - there are still going to be psychological factors feeding into this. This is true of most sleep disorders. Sometimes when we get too determined to beat something it can be counter-productive. I fully understand how difficult your situation is, but it might still be advisable to adopt the attitude: "I'm going through a tough period and it might get worse, but I accept it and it's OK. It will eventually get better". While at the same time trying to get to the cause, naturally.

Years ago I worked with a young man - a high-flying international lawyer - who was plagued with eczema. He'd had it as a child and it had never gone away. It was terribly disabling and very visible - all over his hands and particularly his neck. He had to bring several changes of shirt to the office every day as his wounds constantly oozed into his collar. He'd tried everything to no avail, and used to shout and scream at his reflection in the mirror along the same lines as you: "I HAVE to beat this!" But it kept on getting worse.

Then he had a serious skiing accident. Smashed up his pelvis and both legs, to the extent they thought they might have to amputate one of them. They managed to save both legs in the end, and he limped back to work about four months later... with no eczema. He said it had disappeared spontaneously while he was in the hospital, though the doctors had assured him they hadn't treated it. Clearly, he'd had better things to worry about during that time... The body isn't just a machine. Our thoughts and feelings - whether conscious or not - influence every aspect of how it works.

I hope you continue getting nights like the last one you've described above. Try and concentrate on the good nights and ride out the bad ones, hard as that sounds at the moment. That will help put you in a better frame of mind. But try not to get angry with "it".

Sorry for that inappropriate smiley in the middle of my last post. I didn't put it there, but forgot that this site always inserts one automatically if you type a quotation market followed by close bracket. Maybe the moderator can look into this?

Hi Lily, no probs really the smiley

Sorry I haven't replied, super busy right now, will update here on Monday. It hasn't been going so well this week though, but I'm doing well separating my nights from my days, which is what I'm currently concentrating on since I'm not doing too well stopping my unpleasantly eventful nights.

Xx

Hi Richard

I love the way you are handling things! Inspirational and makes sense. I know it cannot be easy. Looking forward to your updates

god s blessxx

Absolutely no need to apologise for not answering. You have quite enough on your plate already without having to read my long, rambling posts - let alone answer them! (Intentional smiley!)

Separating your nights from your days sounds like a good way of coping. If you can keep this up for a couple of weeks, I'd predict a slow improvement.

HI Lily, I'm now replying to your long post (post London trip). Firstly, I hope you had a lovely time in London!!

Benzos/seizures/placebos - I don't feel it's been a placebo for me, I had hopes but no expectations when I first started taking them, and no matter what's happened over the last week or so, they are still exerting some control over my attacks.

I feel that the attacks have worsened again due to my home situation, probably. My wife is very poorly, off work and in bed, and I am doing everything right now, for myself, my wife, my 3 year old and my 16 year old, plus trying to stay on top of work. I'm stressed, pure and simple, and I can feel that inside me, and I believe that it's being reflected in my night-time "activities". I'm trying, with relative success, to completely separate nights and days, and I think I'm managing ok, at least with a modicum of success. If I let the stress get to me, I think my nights would fall apart completely right now.

Regarding my "HAVE to beat this" attitude - I actually think it's a good thing for me, although I understand why it wouldn't be for many people. Much of my adult life (and childhood) was based around this kind of statement, the will to win, to not show pain (not such a good thing perhaps), to be srtong in face of adversity, and it has stood me in good stead for pretty much everything life has thrown my way. I am, however, understanding that this will be trial and error until I find the right method TO beat this thing. It will take time, maybe a long time, and maybe even i can't actually beat it, and may just have to control it. I'm stubborn but not pig-headed, so I think I've "got this".

The last week or so - not great, lots of attacks, mostly mild(ish), with a couple of interesting ones mixed in to keep me on my toes. No damage, no injuries, the most notable one being the sofa (currently my bed) turning into a black spongy mouth which tried to eat me. Not pleasant, I remember it but couldn't control it and couldn't make myself wake up from it this time. I awoke in the morning in the corner of the sitting room with a wall of toys and a Christmas Tree in between me and the sofa (mouth).

Anyway, I'm sticking with it, adjusting my own attempts to cope/control/beat this as each one fails (or doesn't succeed enough).

Cheers

xxx

 

Hi Lorraine,  thanks for that, if I can in any way "inspire" others, or at least help a little or give possible ideas, then it's worth every second i spend on here. You're right, it's not easy, as everyone here already knows, which is exactly why I'm on here - you and Lily have been fantastic!!

Cheers xx

 

Sorry to hear about the sofa thing. One of mine used to be pictures, or even shadows, on the wall being portals to another dimension through which "they" were going to come and get me! I did some spectacular furniture removals too. One night, when I believed the door to my room was about to be sealed shut, trapping me there for all eternity, I moved a heavy chest of drawers right across the room. Where I lived in those days the bedroom was thickly carpeted, and in my waking hours if I wanted to move the chest I'd have to remove all the drawers and make a huge effort just to pull it out a few inches to hoover behind it. Goodness knows how I managed to push it about six feet, fully loaded, and into the doorway. When I came to my senses I actually thought I was having a heart attack. My pulse must have been nearly 200 a minute and I couldn't get my breath for ages.

I think you're right to retain a wry sense of humour at your own antics. I found that helped, though I understand all too well that it's not funny at the time. And it's worth bearing in mind that no real harm ever came to me as a result of my nocturnal sorties. The acute phase only lasted about 18 months, and apart from the unfortunate fall in the kitchen about five years ago, I've had no serious attacks for more than 20 years now. (Touching all the wood I can lay hands on!) I still get the "portal" thing from time to time, but these days I just sit up suddenly in bed then tell myself not to be so daft and go straight back to sleep!

I really admire your fighting spirit, all the more so because it's tempered with acceptance. I think that's exactly the right approach. It's entirely possible that no cause for all this will ever be found (though that doesn't mean you should skip the investigations) and that you will indeed have to live with it. Paradoxically, that might well be the outcome that leads to a significant improvement. I've only ever met two other sufferers in the flesh, plus quite a lot on-line, and I've also seen several interesting TV programmes on the subject. What I've gathered from all of these - plus my own experience - is that in the vast majority of cases this is a transient condition. People seem to suffer from it for a year or so, then it disappears or at least becomes manageable.

On the subject of finding a method to beat this - I assume you're attempting to identify possible triggers? Stress, obviously, though I can see there are limits as to how much you can control this one. Unfortunately, triggers seem to be harder to identify for night terrors than for the REM sleep disorder, but it's still worth a try. As an aside, I had a god-awful attack of the latter my last night in London, but that was my own fault for disregarding a known trigger!

My heart goes out to you, coping with children aged 16 and 3 as well as all this. Both difficult ages in their own way. It would have been easier if they'd been, say, 10 and 8. I feel very sorry for your wife too. It must be hard for her to understand all this. By the time I started having a serious problem I was no longer in a relationship and living alone, so I was the only one troubled by all this. I hope you're both able to talk about it.

If your GP can't get your investigations brought forward, it might still be worth asking him whether there's any other medication you can take, in addition to the clonazepam. Antidepressants can be quite effective for all kinds of sleep disorders, though they also have withdrawal effects. However, I can't stress enough that you shouldn't let him start you on antipsychotics. As he's in touch with the neurologist, I think it's unlikely he'd do this but you still need to be watchful.

Stay in touch if you find it helpful. Lorraine and I are here for you. But don't add to your stress by thinking you have to reply. No one is going to feel hurt because you haven't answered. You and your family are the important ones at the moment.

Lily xxx