I have run out of hope

[HopelessLes]

Background info:

M, 40y/o. I live with my Mum; we both have complex health issues that are NOT being adequately managed by our doctors.

*I had to pare this post down to 2500 characters from over 7000. A LOT of detail has been lost*

I am suffering from a condition that appears likely to be Narcolepsy type II. I also have several other physical and mental health problems.

My main symptom is a permanently reduced level of wakefulness/alertness. This has gradually worsened over 27 years. Until two years ago it was relatively manageable.

Last year a Sleep Specialist suddenly stopped the only medication that had been helping me a little. She COULD have done this in a kind and understanding way but she deliberately made things as traumatic as possible.

I had already been suffering from Demoralisation Disorder due to previous stressful incidents with doctors; the incident last year has caused full-on PTSD. I CONSTANTLY relive that situation, dozens and dozens of times a day. And it gets stronger and stronger...

I am supposed to be caring for my Mum, especially as her health is deteriorating also, but she is looking after me more and more and it is draining the little health and strength she had left. I feel so TERRIBLE. Before Dad passed away, he made me promise I'd look after Mum. That was the only thing he asked of me. And I can no longer do it. I am a failure. An absolute failure.

The final straw came last week when I had an appointment with another Sleep Specialist to get the results of my recent Sleep Study. He gaslighted me and said there's nothing wrong.

I give up. Nobody listens and nobody cares. Nothing works. I can't get any answers, I can't get any help.

I have tried nearly twenty antidepressants with ABSOLUTELY no benefit from any of them - probably because my problems are neurological and psychological, not psychiatric.

I've been feeling suicidal and don't feel very supported by my healthcare professionals.

I cannot tell my Mum how I feel as she is very religious and I know she would not react well.

My current state of mind is ABSOLUTELY hopeless. All I want is to feel OK again. But every day things get worse... I have lost everything. I used to be smart. I used to be good at solving problems. But not any more. My brain is dying more and more each day.

I do not understand why I can not get help. I have tried SO HARD, for SO LONG... and all for nothing. I am done.

[HopelessLes]

Thanks so much therising.

They have me some meds but they didn't do much really.

I told the Dr (Registrar to the main Psychiatrist) about my self harm. I think she got the message I'm no longer safe... She asked me what help I need to get through, but I didn't have any ideas. Nothing really helps my feelings and thoughts. Talking might help but there is nobody available. I have repeatedly asked to talk to a psychologist or social worker but nothing has happened. She suggested I talk to the nurses, but I've tried that and found most of them are not willing to talk (plus they're too busy anyway)

There was one lovely nurse who had a chat a few weeks ago, but she hasn't been in in a while - on leave I guess.

[HopelessLes]

Thanks Sophie, I'll check out the app.

[Chris_Tas]

Are you wanting help?

Help is there if you are willing to accept it it.

I did.

[HopelessLes]

I had my first ECT treatment yesterday. As far as I could tell, it went well. I had a very sore muscle on the left of my jaw (from the treatment itself) and felt very weak for a few hours from the muscle relaxant. Later in the day my whole body ached a little but nothing major.

Today when I woke I could barely get out of bed - almost every muscle is SORE and movement is difficult.

I haven't noticed any memory problems. My mood is perhaps a TINY bit improved, but still a very, very long way to go.

Many people say they don't remember the few hours before and after each ECT treatment - I remember right up to the point the anaesthetic knocked me out, and I remember trying to wake after the treatment was finished. Hopefully that might mean I won't have too much impairment - memory loss and alteration to concentration, decision-making etc was the main thing I was worried about. SO FAR it seems fine. But I will have to see what happens after the next few treatments...

[Croix]

Dear HopelessLes~

Well, I'm glad for you that the treatment has finally started. I'd imagine it can be a worrying experience as it may be difficult to know what to expect and the extent of any side-effects.

The muscle soreness is an established side effect, as can be some short-term memory loss. This is in Beyond Blue's summary

https://www.beyondblue.org.au/the-facts/depression/treatments-for-depression/medical-treatments-for-depression/electroconvulsive-therapy-ect

and also that of the Black Dog Institute

https://www.blackdoginstitute.org.au/wp-content/uploads/2020/04/2-electroconvulsive-therapy.pdf?sfvrsn=6

One tip I noticed which seemed pretty sensible was to take a note of things like passwords in case they temporarily escape you recollection.

While this therapy has a good reputation I'd suggest frequent regular contact and assessment after treatment, particularly if you notice something that is worrying you. You are in charge after all and can decide at any time what needs to be done - or not done.

I really hope it helps. Please let us know how you get on

Croix

[Chris_Tas]

Yeah hope it works.

[therising]

Hi Les

So glad you're making progress. Trust yourself when it comes to this new experience. If you feel the need to question, go with that feeling and question. 'Why am I feeling sore? Why am I feeling tired?' etc etc. You deserve a full understanding on what you're experiencing. You're in charge of the experience Les. Others are simply there to take you through it, explanations included. You're the boss Les.

Hope next one leads you to feel a positive significant difference.

[HopelessLes]

Thanks for the replies everyone.

I had the 2nd treatment yesterday. I didn't have as severe side-effects from the anaesthetic and muscle relaxant (I expect they adjusted the doses), but I have noticed some minor memory impairment. However my mood has definitely not improved. I felt a tiny improvement on Friday and Saturday, but that must have been due to the relief of something finally happening, rather than a true response to the treatment. Sunday I felt awful again and yesterday I actually felt worse after the treatment. I slept longer than usual last night and had to go back to bed after breakfast. Still struggling to stay awake now after more than 11hrs sleep...

I'm a bit worried that my greatest fear might be happening: that the anaesthetic is making my sleep disorder (Narcolepsy?) worse... I definitely feel less AWAKE than I felt last week.

[HopelessLes]

Feeling terrible today. I really can't tell if I'm awake, or asleep and dreaming. Everything feels far more detached and meaningless than usual, and that was already a major problem... I can only hope that the next ECT session helps. If things get even worse, I won't be able to function at all. I'm already much worse than I was on Sunday. Can't think clearly and I feel as though all my memories are much more distant than they were.

[Centaured]

Hey hopeless. When I had ECT I didn't notice any positive effects since until about the 4th or 5th session. This is usually the case with most people, some take more.

Im sorry you feel so horrible. It must be a nightmare to be in this space. Please dont give up.