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My son is starting EMDR therapy next week and was warned that it could be pretty intense. His mental health is very fragile at the moment and I was just hoping that others could tell me about their experiences of EMDR and how it affected them afterwards?
I know very little about PTSD treatment and I'm worried about the after effects. My son also has ASD and has been completely traumatised by his illness so I feel I need to know just what to expect.
Any insight at all would be very much appreciated. Thank you.
I haven't had EMDR, but I'm keeping it open as an option. I've heard great things about it, and it's approved by the APA for treatment of PTSD.
https://www.apa.org/ptsd-guideline/treatments/eye-movement-reprocessing
Thank you so much, Vee. That's a really informative and helpful review. It all sounds highly complex but at least I know that the psychologist we have chosen has years of experience behind him and works at a leading mental health hospital in London. It will be good when the first session has been completed.
MyNameIsTerry
21-01-20, 04:28
Pulisa, might be worth a look for posts by drpattijane. She said she was a professional who used it (no idea how valid that is but her posts were very informative which is why I remember them whenever someone asks about EMDR) so it may give you some good ideas about it.
I just searched to check her name and noticed a couple of older members who mentioned they have had EMDR too. SarahH (she left ages ago but I think she was a regular in your early years here as we joined at similiar times and I used to talk to her) mentions she had it for her PTSD caused by her job as a police officer. Also, swgrl mentioned it on one of the threads I just saw and I'm sure she would talk to you about it if she was on as regular as before but maybe a PM? Both of them said it was beneficial on the threads I just saw and I remember Sarah always saying it was good.
I hope it helps him. He needs some positive move forwards right now...and you all need some stability :hugs:
Given how serious your son's mental state is they must be confident because trauma therapy must be hard going and he's surely fragile right now? I guess they will be very strictly monitoring how it affects him?
Thanks for these suggestions, Terry. I'll certainly do some research on past threads.
No there will be no monitoring post sessions. These are private therapy sessions and the CMHRS don't get involved. I doubt whether they have heard of EMDR anyway and they certainly have no interest. They can cope with moderate problems but nothing too complicated.
I think you'll find members on the PTSD section that have had EMDR. I was offered EMDR on a private basis, but didn't take it at the time. It's been very successful for some people. Hope you get some good responses on this thread. x
MyNameIsTerry
21-01-20, 17:40
That's a shame, pulisa. But perhaps the person delivering it will be doing this by assessing his responses in the sessions? I wondered because from others who go through reliving PTSD to treat it on here it sounds like it can be a hard process and I would have thought your son needs very careful monitoring right now.
I'm sure should anything show you would be straight on it anyway but mental health treatment always feels like so much is put on the loved ones to watch out for when it's such a complex area.
I'm terrified about the repercussions, Terry. I'm not sure about it at all because it could open another can of worms. Today has been a bad one so I'll have a chat with the psych and get his opinion. Thanks for the support.
ankietyjoe
25-01-20, 17:23
You do need to be very careful with EMDR, depending on the nature, intensity and number of times trauma was experienced. It tends to be unsuitable (as far as I understand it) for conditions resulting in multiple personalities. You do have to be very careful with trauma therapy and find the right treatment for the right person.
In my personal opinion Pulisa, it could be playing with fire.
I think it depends on the trauma, the nature of the person and circumstances.
Only you and your son will be able to draw your own conclusions, not a therapist, because she will be working from a textbook and that's not real life! x
As things stand I think he is too ill to cope with trauma therapy and i will be emailing my views to the psych. I do trust his opinion because of his credentials and experience of working with trauma and ASD at a leading mental health hospital. I am just a parent though but even so I am not going to take any risks with something as awful as this
ankietyjoe
25-01-20, 21:30
I can only go by what we went through with my misses, but her first round of trauma therapy made things infinitely worse. Trauma disorders are hard to diagnose properly, and unique in their effects on the sufferer. PTSD is almost an umbrella term for a multitude of mental states and unlike anxiety or depression, the wrong treatment can have significant negative effects.
I'm not saying EMDR is absolutely 100% not the right thing to do, I'm just suggesting (as you already know) to tread very carefully before committing to treatment.
I really hope you find the right path for him.
SnowyGreen
26-01-20, 05:28
I have complex PTSD from years of abuse. I was also having flashbacks of one particular event. My psychologist did 1 session of EMDR on me, and I have never had a flashback again. This was 16 years ago.
That's incredible, Snowy and thank you for giving me that reassurance. I am so sorry that you have suffered so much in your life-abuse is a horrendous assault and i admire anyone who has managed to rebuild their life.
My son's trauma is related to his former workplace and is complicated by his ASD. I'm hoping and trusting that a psychologist who treats people like my son all the time will make the right judgement call. I'm not sure when the "right time" would be to start EMDR-the local psychiatrist is keen for him to start now and his meds have been increased. I need to have faith and not let my fears take a grip xx
It's a difficult decision Pulisa and to some extent its a bit of a gamble. See what the psych says first.
I refused because I feared the treatment and had lack of trust and more importantly, I didn't know what I would be getting into. I still think I made the right decision.
I think you have to bear in mind whether your son will fear the treatment and wants to go through with it. They are two important factors. x
ankietyjoe
26-01-20, 13:17
Pulisa, can you hint at what the work trauma was? Some trauma's are less 'ingrained' than others and may be easier to treat...relatively speaking.
Legally I can't go into details but for him it is a matter of life or death and has lead to hospitalisation following numerous self harm/suicide attempts. It is still going on after 6 solid months. Standard CBT and psychological support hasn't touched him, nor have meds so far. He has lost all interest in everything other than ruminating on the trauma. This needs an ASD expert so I have to have faith.
Have you read the book, The Body Keeps the Score by Bessel van der k (https://www.amazon.com/s/ref=dp_byline_sr_ebooks_1?ie=UTF8&field-author=Bessel+van+der+Kolk+MD&text=Bessel+van+der+Kolk+MD&sort=relevancerank&search-alias=digital-text)olk? Lots of great info and recommendations. Best book out there on PTSD IMHO.
ankietyjoe
26-01-20, 18:48
Legally I can't go into details but for him it is a matter of life or death and has lead to hospitalisation following numerous self harm/suicide attempts. It is still going on after 6 solid months. Standard CBT and psychological support hasn't touched him, nor have meds so far. He has lost all interest in everything other than ruminating on the trauma. This needs an ASD expert so I have to have faith.
Yeah I would say CBT would be pointless here as it's not a behavioral issue.
Do you have a case worker from your local mental health team?
Yes but he has just been allocated a new one(last week) and contact has yet to be made.
Have you read the book, The Body Keeps the Score by Bessel van der k (https://www.amazon.com/s/ref=dp_byline_sr_ebooks_1?ie=UTF8&field-author=Bessel+van+der+Kolk+MD&text=Bessel+van+der+Kolk+MD&sort=relevancerank&search-alias=digital-text)olk? Lots of great info and recommendations. Best book out there on PTSD IMHO.
Thanks for this, Vee..I will get hold of a copy-very grateful for the recommendation.
I see it's in Spanish..I do speak Spanish but will look for an English translation on Amazon because my competence won't run to complex psych terminology!!
ankietyjoe
26-01-20, 19:48
Yes but he has just been allocated a new one(last week) and contact has yet to be made.
Use that resource, and if your instincts are telling you that the person isn't right then trust them. We got onto our third one before we found one who actually gave a crap and pushed for treatment. Took us 2 years, but you really have to make noise about it these days. If they don't contact you, chase them. Every day.
MyNameIsTerry
26-01-20, 20:08
I have to say when you mentioned EMDR I did think that too. Your son has always sounded in a very fragile straight throughout this and EMDR is hardly a therapy that avoids looking at painbful triggers. It surprised me because I would have thought they would get him stabilised on meds and be veyr sure before they do much of anything therapy-wise and anything he would get would be more of a support/counselling process to bring him down to a place where he is ready to work on things.
If someone has severe anxiety you wouldn't be throwing them into exposure work which would be raising their anxiety levels at a time when anything minor causes a much more exaggerated reaction.
I didn't want to say this because you've got an expert recommending it, I know little of ASD (and you are an expert) and didn't want to be negative at a time where you are also fragile. But now you have I have to agree and say trust your instincts on this.
ankietyjoe
26-01-20, 20:36
If someone has severe anxiety you wouldn't be throwing them into exposure work which would be raising their anxiety levels at a time when anything minor causes a much more exaggerated reaction.
Also, the consequences of doing this with somebody with anxiety are frankly minimal. Their anxiety might get worse for a while, or it has a good chance of actually helping too. An exaggerated reaction to trauma therapy can be dire, and long lasting.
I didn't want to say this because you've got an expert recommending it, I know little of ASD (and you are an expert) and didn't want to be negative at a time where you are also fragile. But now you have I have to agree and say trust your instincts on this.
And I would like to reiterate the point that trauma is an area where experts are regularly wrong. But like Terry I would say that I'm just erring on the side of caution rather than being negative.
Yes, that book I mentioned talks about the different types of therapy and how to be careful not to choose therapy methods that will retraumatize the patient.
I really wish he could have this treatment in hospital as an inpatient. Locally it's just under a thousand pounds a night at a Priory hospital....which I think is absolutely appalling and completely out of my league. Even more eye watering no doubt at a London hospital.
I've emailed the psychologist with my concerns so now it's down to his assessment tomorrow. Thanks so much to you all for your support xxx
Pulisa, I agree with Joe and Terry's comments.
And yes, the treat in hospital would definitely be the best option, but it's not to be, so you have to work with the options you do have. Which is not alot.
If I can say the situation would be easier once settled in to his meds and we both know that could take months!
I also wonder if EMDR could be done at your home, if you choose to go that route.
For me personally, I was so broken that I knew exposure would not be a good option. I think you have to reasonably stable before approaching anything more traumatic. x
The aim is to have further EMDR via Skype, carnation.
We've had an awful day today but i've emailed the psych and told him everything so at least he knows the situation.
Sorry to hear that Pulisa :hugs:
Skype will be interesting and better than travelling to a venue, but a little cold feeling I would imagine. It also leaves you to pick up the pieces which I'm not favourable for you having to deal with.
Is there any improvement with your son? Maybe the meds need changing / increasing?
I wish there was more I could do for you xx
His meds were increased yesterday (300mg venlafaxine) but he's not in a good place. I'm relieved we are going to the appointment today xx
I don't have much advice to offer, but I'm thinking of you and wishing you both the best of luck.
ankietyjoe
28-01-20, 09:47
Here's hoping the meds take the edge off a bit. Remember to look after yourself too, and that you can 'sound off' here all you need to. x
MyNameIsTerry
28-01-20, 17:40
Also, the consequences of doing this with somebody with anxiety are frankly minimal. Their anxiety might get worse for a while, or it has a good chance of actually helping too. An exaggerated reaction to trauma therapy can be dire, and long lasting.
That's something I would slightly disagree on though. Whilst it might seem like a bad day due to exposure that can easily turn into a spiral which deepens the anxiety. Doing it on someone so severe they are sectioned would never be sensible and the consequences could be bad. I'm guessing you are talking about the affect at a deep level where as anxiety would take a lot longer to develop like that as opposed to heaping trauma onto trauma in someone with something like PTSD? The severely anxious person might just turn inward and add months of additional severity to their condition. Often how a breakdown ends up going.
But someone mild-moderate is going to handle it much better and see it fade without the long lasting effects of a shock added to severe anxiety.
MyNameIsTerry
28-01-20, 17:44
Pulisa, I think your instincts about having that as an inpatitent are completely valid. The last thing you want is your son deeply upset by something to have a quick cup of tea calming down session when it's more likely he needs days of calming down.
Now he's up into that range where Ven starts working on dopamine levels lets hope it helps him.
How is he handling the med side effects? That must be a serious worry for you all?
Dying_Swan
28-01-20, 18:01
How did it go Pulisa? Have been thinking of you.
ankietyjoe
28-01-20, 19:05
That's something I would slightly disagree on though. Whilst it might seem like a bad day due to exposure that can easily turn into a spiral which deepens the anxiety. Doing it on someone so severe they are sectioned would never be sensible and the consequences could be bad. I'm guessing you are talking about the affect at a deep level where as anxiety would take a lot longer to develop like that as opposed to heaping trauma onto trauma in someone with something like PTSD? The severely anxious person might just turn inward and add months of additional severity to their condition. Often how a breakdown ends up going.
But someone mild-moderate is going to handle it much better and see it fade without the long lasting effects of a shock added to severe anxiety.
With respect bruv, I've seen and understand the consequences of inappropriate exposure therapy on somebody with a trauma based disorder and the consequences are beyond what 'we' would suffer. Immediate, dramatic, and potentially life threatening. I think it's common to assume that trauma disorders are a form of anxiety, and they are not. It's actually a dissociative disorder where reality can be immediately distorted and misinterpreted. Re-traumatising an already traumatised brain can add another layer of long term issues.
MyNameIsTerry
28-01-20, 19:15
With respect bruv, I've seen and understand the consequences of inappropriate exposure therapy on somebody with a trauma based disorder and the consequences are beyond what 'we' would suffer. Immediate, dramatic, and potentially life threatening. I think it's common to assume that trauma disorders are a form of anxiety, and they are not. It's actually a dissociative disorder where reality can be immediately distorted and misinterpreted. Re-traumatising an already traumatised brain can add another layer of long term issues.
My disagreement was with the point inappropriate exposure therapy on a severe anxiety sufferer could be classed as minimal.
That doesn't mean I'm disagreeing with your points over trauma based conditions or your experiences, just that minimal wouldn't be how I would describe my experiences of being exposed to triggers when I was barely able to brush my teeth every day. It takes hold and pushes you back further which is nothing like the immediate dramatic impact you are explaining.
The dramatic consequences you mention would certainly be more appropriate when considering pulisa's son.
Apologies if that was unclear. I'm probably going a bit off topic.
Just to say that I'm back and thanks for your concern-I really appreciate all the advice and good wishes xx
Another awful start to the day but we survived the morning and managed to get up to London before carnage hit the rail network. It's not easy travelling with a son eyeing up the rails (he has "history" at train stations). He didn't have EMDR but was able to talk about how the trauma dominates his every waking moment. He is so spaced out and distant now. I don't think this is true PTSD-more trauma mixed in with ASD which has locked him into a destructive mindset. The aim of EMDR will be to try to unlock this mindset, I suppose? I haven't had any feedback from the psych but I wouldn't as he's an adult. Feeling totally crap to be honest-it's horrible living like this and my poor daughter is a wreck.
Journey back was a nightmare thanks to derailment and cancellations..Could have done without that. Will have to Sky + Silent Witness as a treat for whenever!:)
Sorry it’s all so stressful, you just have to hope it’s going to help I suppose? Do you have any ideas what will help your daughter? I suppose it’ll be when her brother is a bit better?
Pulisa, I'm not at all surprised there was no EMDR today and in a way, that must have been a relief there.
I also wondered whether it was PTSD, but a traumatised state and deep depression.
Meds seem to be the best option presently and obviously because we don't have the background it becomes more difficult for us to make suggestions.
Although you have said that you can't due to the nature of the situation.
But we are here for you and will help you in anyway we can and give you a much needed hug when things get too much. :hugs: x
I think being away from the situation would help her so I have booked an overnight stay for us both at a hotel next week. My OH will have to hold the fort.
Pulisa, I'm not at all surprised there was no EMDR today and in a way, that must have been a relief there.
I also wondered whether it was PTSD, but a traumatised state and deep depression.
Meds seem to be the best option presently and obviously because we don't have the background it becomes more difficult for us to make suggestions.
Although you have said that you can't due to the nature of the situation.
But we are here for you and will help you in anyway we can and give you a much needed hug when things get too much. :hugs: x
Thank you, Carnation. I don't know how to try to move on from this really. I wish I could erase the last year from his memory and ours but I obviously can't. Just got to wait and see what happens next xx
Oh P, this thread has kind of been off my radar - as it started with discussion of a therapy I know nothing about at all. I've just read the last few pages now, what a time you are having, it must be hell seeing your son and daughter struggling and so much pressure on you as an individual ! So, you travelled for this assessement today to London (yes the Basingstoke freight derailment was a pain in the backside to many trains!) but who is there who supports in the more immediate area on an 'as needed' basis, in terms of psychi support ?
I don't know how to try to move on from this really.
You answered it yourself in the last sentence - all you can do is let things progress, let time happen, wait for the next step, make choices as they happen and are offered, keep yourself as well as you can and keep everyone as safe as you can in the meantime. What a huge amount to be responsible for though !
You want it gone, everything erased that has caused the damage which you know can't happen, but I truly believe the age old 'this too shall pass' will eventually be true. The healing will come, the steps and stages aren't clear now and it is that which is so damned hard for you. I'm sorry I didn't read this all sooner. :(
Dying_Swan
28-01-20, 21:11
Sounds a lovely idea to have a girls night away. It must be very difficult trying to balance looking after everyone at the same time, and I hope a night away will also give you some relief.
I had some trauma therapy (not EMDR) and often felt spaced out and far away during that time. Whether or not I have PTSD depends on who you ask, and I am unsure how ASD affects things, but I am hoping the psychologist has given your son some grounding techniques that are appropriate for him and his needs. Will he go back for EMDR or will that be via Skype?
Enjoy Silent Witness :)
Great idea to have a night away, I hope it’s good for both of you.
I think you and your daughter being away, even for a short while is just what is needed. It will give you a breather and hopefully some much needed, good quality sleep. x
I agree with C. Also, see if they have a jacuzzi!
Thank you to you all..I am so grateful and it's good to have advice from people who can think far more clearly than me.
I know they have a pool and a spa at the hotel...My daughter will like that but it's not my thing (too skinny to show my bones!!) I think it will do us both good to get away from here just for a short while.
The sessions will now be via Skype which is a blessing because train travelling is so stressful. He does adapt his EMDR therapy to suit his ASD patients but my son can use the sessions for counselling if he isn't in the right place for EMDR..
As for local support, Carys...I have had words with the CMHRS and the psychiatrist has increased his meds. There is no support for family members though-we are collateral in all this despite my daughter also having special needs. Her GP can only offer diazepam as she lies "between services" in terms of mental health support and is unable to take anti depressants due to medical reasons.
I will let things happen, Carys...Nothing else I can do. Just a week until our night away and things could be a whole lot better by then xx
MyNameIsTerry
29-01-20, 13:13
Yes, a good night away to try to relax. And try to allow yourself to relax and not spend the time wanting to phone home to check. You need a break and don't feel guilty about it either.
DArned right you need a break !!!!
Dying_Swan
29-01-20, 16:10
When is the next session Pulisa? I think it sounds positive that the psychologist is willing to be flexible in approach depending on your son's needs at that time. That way he is still getting some professional support, but hopefully at his own pace. I wonder whether having it via Skype might feel less intense for your son to cope with, as well as not having the travel difficulties.
There are so many gaps in mental health provision, and far too many people unfortunately fall between them. I hope the short break will be therapeutic for your daughter, as well as for you.
Thank you, DS. We both need a break away from the situation. I think anyone would struggle with this, regardless of anxiety.
The next session via Skype is on Tuesday. I am thankful to have appropriate professional support even if it's just for an hour.
MyNameIsTerry
30-01-20, 19:13
Yes, they would. And some would likely end up on here with an anxiety disorder after going through this with a loved one. Anyone could have a breakdown from so much prolonged pressure.
I think my OCD/poss autistic traits/motivation have helped keep me going and have done me a huge favour, Terry. I would probably have a breakdown if I had nothing to do/nobody to look after and had to face up to my own demons.
ankietyjoe
30-01-20, 21:59
To put this into perspective, I have a one hour weekly session with a therapist because of my partners DID. It's easy to lose track of just how much stress it is being around somebody with a trauma disorder. For example yesterday she 'split' on the sofa at home just before I had to pick up the youngest from school and my eldest (still only 11) got home. Obviously they can't find her there like that, but I had to get her sorted out and still not be late for the school run. I had no idea who she was at that point, but she was basically mumbling incoherently and was 'dead weight'. I managed to get her upright, but couldn't move her from the sofa (physically moving her without her consent can cause extreme reactions, so it has to be handled with care and permissions). I managed to get her propped up and quiet, but had to text my son on his way home from school that Mummy had a massive headache so don't even talk to her when you get home and just go upstairs and play for a while. I deal with stuff like this on a regular basis, and more. Trauma disorders suck. It's stressful to deal with as you cannot do the normal reasoning with somebody who isn't really there and doesn't know who you are.
There is help out there though, and we're always here too P. :)
A hug for you Joe :hugs:
For you and your daughter, Pulisa :hugs: x
I do appreciate your input, Joe and I'm pleased you have some small form of professional support. I have been in the system of caring for 34 years now and am very used to putting up a fight to get what my children need. At some point you realise that you're better off on your own because you know more than the so called experts and Surrey is appalling as regards being flexible when round pegs don't fit in square holes regarding care packages. I'm currently negotiating with IAPT to get some counselling for myself alongside my daughter as it's really difficult to get help for her as she has an ASD label.
thank you, Carnation xx
ankietyjoe
31-01-20, 16:04
I do appreciate your input, Joe and I'm pleased you have some small form of professional support. I have been in the system of caring for 34 years now and am very used to putting up a fight to get what my children need. At some point you realise that you're better off on your own because you know more than the so called experts and Surrey is appalling as regards being flexible when round pegs don't fit in square holes regarding care packages. I'm currently negotiating with IAPT to get some counselling for myself alongside my daughter as it's really difficult to get help for her as she has an ASD label.
thank you, Carnation xx
We have been lucky (combined with fighting) to receive the support we have. If you like, I could ask about any other resources local to you. Surrey isn't far from me, and my therapist is part of a larger dissociative specialist, so maybe she could help?
And thanks too, Carnation x
Thank you Joe. That's very kind of you.
Is it tomorrow your hotel stay Pulisa?
Wishing you a blissful rest whenever it is. x
We had to cancel the hotel and are going for the day on Wednesday instead, Carnation. Things are just too unstable and my OH isn't used to anticipating danger signals from my son. It's fine..we will still have some time away and will try again when things are easier xx
It's something you can expand on if you need to.
The time away will still be beneficial to you both. xx
Dying_Swan
04-02-20, 00:26
Sorry to hear that, but glad you'll still get a day trip. Have a lovely time, and I hope you'll soon be able to have your girls night away.
Thank you to you both. We haven't been able to have a day out since July other than an afternoon in London in December so it's probably best to start with a day trip. I think the weather is sunny but cold tomorrow so ideal. We both have to make that psychological break away from my son's illness-I'll be ok but my daughter won't unless she gets a chance to experience normality again.
It's going to be a lovely day tomorrow Pulisa, like you say cold but sunny with no wind, unlike today.
I think it will be a breath of fresh air for you both.
I know you have the situation to go back to afterwards, but at least you can treat yourselves for the day.
Mr C and I used to do this in our days of caring.
We'd take some books or mags, order a nice lunch, then have a stroll around the Hotels Garden and finish with a tea and cake in the afternoon.
And people watching can be interesting too.
I'm hoping you will make this an ongoing treat, you both deserve to breathe some fresh air. xx
That's really kind of you Carnation xx
We are going to visit a favourite tea shop and get some much needed bracing sea air. Also going to visit a couple of new attractions. Just hope the trains don't play up as I always fear being stranded! Mind you, might not be a bad thing:D
Hope you had a nice day today Pulisa x
We had a lovely day out in sunny Brighton, Carnation! All went to plan which always helps!! Got some quirky socks and a new soap..Also shared a seafront bench with a very persistent enormous seagull who was intent on being fed! My daughter took loads of photos so some memories to look back on.
Am glad we didn't stay the night-the day was just the right amount of time xx
That's lovely to hear :)
I'm sure it's done your daughter a lot of good.
I'm so pleased you went Pulisa, you deserve it! xx
Dying_Swan
05-02-20, 20:27
So pleased to hear you had such a nice day. I haven't been to Brighton in years, but it's such a cool place. Sometimes a day trip is all it takes just to give you a breather, and a change of scene, and sometimes it's less stressful than staying overnight. I hope the sea air (and the hungry seagull) did you both good x
Thanks to both of you and yes, it did us a power of good ! I'm not good at staying overnight at the best of times so we made the right decision.
We did loads of walking and it was good that there weren't too many people about. No people in masks either!!:D Plenty of coughing and sneezing on the packed commuter train back though-no sign of mass panic though just blind indifference which I like!
We both feel like we have caught the sun-good going for Feb!! Back to reality now but plenty to remember to get us through any difficult patches xx
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