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Yikes - i have an appointment at a sleep disorders centre!

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barefoot

MyPTSD Pro
I have been referred to the sleep disorders centre at Guy’s Hospital in London re my night terrors. The appointment will be an hour long consultation and my partner is going to come with me as she really has a much better idea about what happens than I do.

I’m now not really sure what I want to get out of going there. I think it’s partly because I have never been diagnosed - I’m pretty sure it’s NTs, but I guess a sleep specialist may tell me it is something else. And they might be able to give me some tips to manage it that I haven’t already discovered.

I’m not sure whether I should disclose that I have PTSD and that I see a therapist? On the one hand, I think I should give them an honest, accurate picture. But my worry is that they may then just dismiss me and think I am wasting their time and that I should just keep seeing my therapist and stop bothering them.

My therapist believes the NT are a trauma response and that it is trauma/anxiety leaking out and unconscious trauma-related experiences being processed while I am asleep. So I also think she might wonder why I’m going to a sleep centre when we are already working on the root of why I’m having these sleep issues. But then, I am also aware that she is not a sleep specialist. Maybe the sleep specialists will think differently?

Writing this, I am not sure why I am so worried about what the sleep specialists/my therapist will think of me or how they will react to me going for an appointment! But I am unsure now why I am even going.

- Just to get a diagnosis? That feels important. But what for? What does it actually matter?
- Advice on managing it would be good but I’m not sure I’m expecting much on that front.
- Stopping them altogether? Is that even something I can realistically hope for?!
- Medication - I’m a bit worried that this will be their recommendation but I don’t really want medication. I don’t really know why not. Maybe because I worry that it will stop all dreams and I don’t really want that.

I now realise that I am posting a lot of questions that the sleep clinic will be able to answer so maybe I don’t need to know the answers to those questions now.

I think I am feeling very anxious...

I don’t know what to expect from the consultation. I asked if I had to do anything in prep or take anything with me and was told no but I am feeling very uncertain.

Don’t even know now why I’m posting either! Good grief!

Er....so some questions someone here might be able to help me with:

- does it even sound worth me going?
- if I go, should I tell them about PTSD/that I already have a therapist?
- I will probably try to pull together a bit of an idea of when they started and main themes, patters, behaviours and will ask my partner (and possibly my parents re when they started - but that feels like quite a frightening idea as I don’t know whether I want them to know I am going) Is there anything else that would be useful?
- has anyone else been to a sleep specialist re NTs and, if so, did you feel you got anywhere?

Sorry....didn’t realise how anxious I felt until I started writing!
 
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If it makes you feel any better, my therapist has actually suggested me going to a sleep specialist. (I refused. That's a whole different topic.) I think there's a pretty well known connection between sleep problems and PTSD. If EITHER the sleep specialists OR your T want to make an issue out of you consulting both, I'd be less than impressed with them. Personally, I think you're best bet is to go ahead and keep the appointment, and tell both sets of professionals what you're doing. What you're doing isn't all that unusual, as far as I know. (Good luck & let us know what you learn!)
 
Hi there Barefoot. Thanks for the post
I think you should go to the appointment you may be able to find out lots. I also wonder why people think they should with hold info from the professionals you are going to for help, How can they truly help you if you are not truthful and up front with them. I think the best bet is to tell them everything if you want help. the Ptsd is most likely connected or it is the cause of your NT at least it has been with me. I wish you all the best.
Peace be safe
 
Thanks @scout86 - I don’t know why I’m having such a wobble about this. And the appointment isn’t even until December so I need to get a grip otherwise I’ll burn out by then!

If EITHER the sleep specialists OR your T want to make an issue out of you consulting both, I'd be less than impressed with them

I know you are right...they must be used to their clients/patients consulting with other services. I don’t even know why I’m worrying that my T won’t be supportive. I think I am worrying that she will take it as some kind of criticism that I think she isn’t doing a good enough job. I don’t know why I’m thinking that either! Jeez!

@Esterio Yes, I see what you mean about withholding info from medical professionals. I think I am worried about saying too much and being dismissed/treated as though I am wasting their time. But, you’re right - I won’t get clear, accurate help and information if I don’t give them the full picture.

I think I will tell my T next session that I have an appointment booked. I might feel better about it once I have told her - at the moment, I think I feel like I’m keeping it secret, which is silly.

I think I am also nervous about potentially having to go in overnight to be monitored but I know I am getting ahead of myself with that and that it’s very possible that I won’t need to do that.
 
This is so complicated to figure out so just my thought about it if you don't tell them what is going on it makes it even harder for them to try and figure out what is going on with us. I try to tell as much as I can. I miss lots as my memory and recall are not very good. If you tell them both what is going on then you won't have to wonder if you should or not, it will be done.
2 of my friends just did sleep studies and they had a hard time sleeping they thought but the machines got enough info so they got results. I can't tell you the results but they both have found out something. Now whether it helps time will tell.
Peace be safe
 
Tell them everything!

If they are going to help you, they need to know what you're dealing with.

Otherwise you may end up wasting their time and yours, or they may go off down random Bunny trails.
 
Not sure if this is helpful or not, but I suffer from C-PTSD and have a terrible time with sleep issues (insomnia, waking up, nightmares)
I decided to go through with sleep study recently, mainly to see if I suffered from sleep apnea, or any other medical issue that exacerbate my sleep issues related to PTSD. I did NOT reveal my PTSD diagnosis, as I have found that once I do this medical professionals become very lax in trying to find medical issues and just chalk everything up to anxiety etc.

My sleep study results showed sleep apnea, and I will like be getting either CPAP or other breathing device. This will help to ameliorate my waking up from
apnea (not nightmares) and will help give me more restful sleep. Which I believe in turn will help me towards ameliorating some of the more severe symptoms I suffer with PTSD.

The reality is that PTSD will cause or exacerbate underlying medical issues and you may need treatment for these in conjunction with therapy, meds or whatever treatment options you are pursuing for your PTSD. Despite positive changes in people's attitudes in the last decade or so, many medical professionals still dismiss anything they deem to be related to mental illness.

So imho, it's better to keep mum. If they find nothing you know what you're dealing with is solely related to PTSD. If they find sleep apnea or something else, you can receive appropriate treatment AND still pursue your treatment for PTSD. Just my two cents.
 
medical professionals become very lax in trying to find medical issues and just chalk everything up to anxiety etc.

Yes, this is what I’m a bit worried about - that they won’t take me seriously and will shrug it off as “just anxiety” or something.

That said, I’m sure there must be a correlation between trauma/PTSD and these kinds of sleep disorders and I surely can’t be the only person who has turned up there with that background.

The doctor I’m going to see specialises in neurological sleep disorders including parasomnias (rather than the respiratory side of things or insomnia) and I’ve just had a look online and the sleep centre has a team of psychiatrists/neuropsychiatrist who are also sleep physicians. So, perhaps that is a good sign in that it seems a more holistic approach, including medical and psychological/mental health?

On the other hand, I have never seen a psychiatrist and think I would feel very nervous about doing so. Worried about what diagnoses I would end up with, probably!

But I’m getting ahead of myself again - worrying about seeing a psychiatrist when it might not even be suggested that I should see a psychiatrist!

And I still haven’t told my therapist I’m going...!

Oh God...I am still stressing about this!
 
Before I got diagnosed with PTSD I went thru a sleep program for insomnia and night terrors and it was one of the best things I've ever done. It was a 6 month program. 3 months of self evaluation and then 3 months of working with a specialist.

He said the goals were to teach my brain how to sleep because it had forgotten how to shut down and to teach me to react differently to the NTs when I had them. It has been freaking amazing. I still have issues with sleep, and he said I probably always will, but they don't seem to matter as much anymore.

I don't know if knowing that I had PTSD would have changed the process or not. But it was so very worth it!!
 
Thanks for sharing @Freida - great to hear that the sleep programme had such a positive impact on you. Very encouraging!

to teach me to react differently to the NTs when I had them

Are you able to say anything more about this in terms of what you were taught/how you react differently to your NTs now?
 
Are you able to say anything more about this in terms of what you were taught/how you react differently to your NTs now?

Sure! first...
that they won’t take me seriously and will shrug it off as “just anxiety” or something.

uhm. yes. It is anxiety. But that is what they should be expecting once they have ruled out any physical problems. That was the whole point of the program I went thru. I wasn't diagnosed with "anxiety" by a doctor or therapist. I just couldn't sleep. So that is what they needed to fix.

In my experience they treated it as two different classes of anxiety.
One is the anxiety you have all day long that affects your day to day life and you take medications. I didn't have that one.
The other is the anxiety that causes insomnia and night terrors and it is attached to sleep. That was me


So - back to the program. It was several years ago but it kind of went like this....

The idea was to retrain my brain to think of going to sleep as a good thing, instead of dreading it as a place where insomnia and scary monsters lived. Ok, that was odd because I thought sleep was just something all humans knew how to do. Nope. Sleep patterns can get so screwed up that your brain actually forgets how to do it. I needed a reboot.

The first thing they had me do was a self eval/training. I had to track my sleep every day for 3 months. If I got into bed and wasn't asleep within 20 minutes, or if I woke up during the night, I had to get up, leave the bedroom and log it. Logging my sleep showed me how many hours of sleep I was actually getting (more than I realized) and how often I was having NTs (less than I realized). That was wild because I thought it was worse than it was. Again, I guess that is pretty common. Then I would look back to the day before and see what I had been doing. Once it was laid out on paper in front of me the connections were pretty amazing. big shocker - I didn't sleep when I was stressed. Ok, I knew that -- but seeing in chart form over a three month was a eye opening. And some of the stressers were unexpected.

I took all that info into the specialist and we started working on how insomnia was affecting my sleep and my life. The first goal there was to slow down how stressed out I was getting about the "cost" to not being able to sleep. I came out with was a much calmer approach to insomnia. Now if I can't sleep it's no big deal. So I only get 2 hours tonight. No biggie, I'll make it up later. That was a total change from watching the clock all night long and wondering how I was going to get thru the day

For the NTs we worked with training my brain to let them come and go without having such an impact. It's almost like they became ....softer. And much less often because my stress about having them was lessening. That was the wierdest part. Finding out my worries about having them was actually increasing the number of times I had them. Does that make sense?

Now when I have them it's more -- "hmmm that was unpleasant" and less "oh dear god I'm going to die!" The way they present can still be the same. What they taught me was how to change my reaction to them. They haven't go away entirely, and neither is my insomnia. But they have become easier to live with (or is that sleep with?) and I'll take that as a win. Sorry I can't be more specific about exactly what techniques they used but to be honest I don't remember. Probably I was so freeking happy it worked that I didn't care how. I will say it's not something I have to remember to use. It's more ingrained into my sleep process as part of the brain reboot.

I think if we had known I had PTSD it could have been a two birds with one stone thing. We could have looked at WHY I was having them as well as how to prevent them. Looking back now that may have saved me a couple extra years of stress because we could have been working on both issues at the same time. Instead I went thru the sleep program with no idea of where my scary monsters were coming from. I just knew I had them. Then a couple years later I was diagnosed with PTSD and had to start dealing with the memories that were actually causing the NTs. That's why I would suggest connecting your sleep doc with your therapist. If they are both in the loop you can be working on the same problem from different angles.

Sorry this got a bit long -- but I hope that helps!
 
Thanks for the info @Freida

Finding out my worries about having them was actually increasing the number of times I had them. Does that make sense?

Yes, this does make sense. I have noticed that if I’ve been speaking to someone about my NTs or reading about NTs I tend to have a NT that night. So, yeah, it seems that having them on my mind can sometimes trigger an occurrence.

I haven’t actually had a NT for weeks - typical! :-)
 
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