5 hours ago, Emsy said:

I’m struggling so hard today.

I’ve had constant panic and head buzz since this morning its just brutal.

I’ve tried everything to soothe myself but nothing has touched the sides.

Even my go to meditations haven’t taken the edge off.

I can only think of one other day when I felt this bad which was February when I tried to change to the liquid but I’ve not changed dose or anything!

You’ve have had such substantial, big windows! 🪟 ☀️

Just gotta hang on.

I’m telling myself the same thing.

Somehow managed to get a few hours sleep last night but back in it from 4.30am today with extreme panic and anxiety and can’t stop shivering 😢

What the hell is going on? Just not getting a break from it.

Big hugs @Emsy, we're here with you 🫂💜

1 hour ago, Emsy said:

Somehow managed to get a few hours sleep last night but back in it from 4.30am today with extreme panic and anxiety and can’t stop shivering 😢

What the hell is going on? Just not getting a break from it.

Sending love, Emsy 💗

4 hours ago, Emsy said:

Somehow managed to get a few hours sleep last night but back in it from 4.30am today with extreme panic and anxiety and can’t stop shivering 😢

What the hell is going on? Just not getting a break from it.

Does anything settle later in the day?

@Finni no that’s the weird thing. I usually get a lessening of symptoms in the evening when my natural cortisol levels are at their lowest and then it all starts again with the morning cortisol awakening response, but the last few days have been brutal with no let up at night.

Lots of weird head feelings and electricity feelings in my body.

3 minutes ago, Emsy said:

@Finni no that’s the weird thing. I usually get a lessening of symptoms in the evening when my natural cortisol levels are at their lowest and then it all starts again with the morning cortisol awakening response, but the last few days have been brutal with no let up at night.

Lots of weird head feelings and electricity feelings in my body.

I wonder if this is a sort of crescendo before things start lessening…

It’s so brutal but has been known to happen!

I’ve had an awful night.

Around 2-3 hours sleep then from 2.30 awake with adrenaline spikes every time I started to doze off and the terror has just continued to build along with the burning skin in my arms and a new one for me which is feeling wobbly on my legs and dizzy.

I’m worse today than I’ve ever been in the whole 10 months I’ve been holding, it just doesn’t make sense.

The whole week has been constant terror but yesterday afternoon it calmed down a bit and I was able to have a very short walk and see my neighbour for an hour and I thought I was coming up for air finally but I’ve gone the other direction.

It’s 10 weeks since I stopped the omeprazole I can’t believe I’ve just got worse this whole time and not getting any clear windows at all.

I’m so frightened and alone.

Sending hugs 🫂

Hugs back dear @Emsy feeling a little better and wanting to walk with your neighbour is wonderful to hear. Little cracks in this im sure. Holding and waiting is horrible. I know you must feel so much fear and wonder if this will end. It will. As you know holds can need to be very long, you are doing the right thing. Wish it would all stablise quicker than this for you, but it will happen, like it did before xxxx

@Chippy thank you so much for your words. I’m letting you hold hope for me today as I’m too exhausted and will reread your encouragement throughout the day xxx

Just now, Emsy said:

@Chippy thank you so much for your words. I’m letting you hold hope for me today as I’m too exhausted and will reread your encouragement throughout the day xxx

Holding it tight my friend so you don't have to xxxxx

Sending you big hugs @Emsy .

I will hold hope for you too. Hang on, this can't last forever.

I get the jelly legs and light headed.

Rest well and go gently, self comfort under your weighted blanket xx

Thank you @Tracey you are so kind.

I’ve read your introduction and can see you have had and are having such a tough time yourself.

Hoping healing comes to you very soon xxx

So I hadn’t realised that stopping supplements could also be an issue!

What a mess I’ve got myself into.

Just after stopping the omeprazole and needing to manage my gastritis with diet I stopped my omega 3 capsule as it was causing digestive issues and I went from 250mg magnesium bisglycinate to 125mg. Apparently that on top of the omeprazole could have compounded the issue and although my blood tests show I have the top range of magnesium my brain could now be missing the extra 125mg.

I darent reintroduce it while this destabilised though in case it goes paradoxical on me.

@LostinCanada i seem to remember you are pretty up on using magnesium supplements?

Sending love, Emsy 💓💓

1 hour ago, Emsy said:

seem to remember you are pretty up on using magnesium supplements

I know that @Mao205 had a real problem stopping magnesium. She had to go back on and is slowly tapering it. That is definitely not the norm but it can happen. After I read her experience I was thinking if I ever came off, I would taper to be safe.

I wouldn't make any more changes at this point.

I do know those PPIs are really a problem...it wouldn't surprise me if this was still affecting you.

Sorry you are struggling with this. Things will level out.

I've been reading about how vitamin C really can help the adrenals and therefore help lessen adrenaline/cortisol. Are you able to tolerate citrus fruits? They can cause reflux unfortunately. Vitamin C is in other foods as well though

20 Healthy Foods That Are High In Vitamin C https://share.google/ZgSc9foVISTkYAFNr

❤️🙏

Edited September 13Sep 13 by LostinCanada

Thanks @LostinCanada for your reply and input. I think you’re right, trying to go back on my previous magnesium dose is just another change my nervous system could probably take badly.

Thinking of you @Emsy 💗

And I’m thinking of you too @Finni and your immense bravery 🫂

Hi all,

Still in it. Very disappointing call with my man from the Prescribed Drug Support Service. He had his supervision meeting yesterday with the pharmacist and the consultant, both very high up, and they said I had 3 choices, stay on a small dose indefinitely, taper off slowly, or as I’m already feeling so bad jump off the 1.2mg.

They both favoured jump off at 1.2mg as the pharmacist said ‘she’s on 1/12 of the standard dose people usually stop on (ie a 15mg tablet) so if she gets some psychological support to do that she’ll have an uptick in symptoms for a couple of weeks then she’ll be over the worst and could feel substantially better than she does now’. They think my symptoms now are side effects of being on such a small dose and that it’s aggravating my system and not allowing it to find equilibrium.

They also both said jumping off now wouldn’t cause any damage to my brain or nervous system it would just be the psychological and physiological affect.

The pharmacist also doesn’t think my current issues are anything to do with the omeprazole.

Complete lack of understanding of the hyperbolic effect these drugs have on the brain or how sensitised a nervous system can become.

The only saving grace is that they both agreed the decision should be patient led.

My stress levels went through the roof when my support guy told me that as that’s exactly what my GP was favouring.

He is so supportive thank god and said he’s not going to put that on the notes to the GP, he’s going to say that they said the taper should be patient led and omit the jump off option and just write about the slow taper option. He also said he was very suprised by their response as the rest of the team had all fed back on my case when he asked them for their thoughts that a slow taper was the only way.

The trouble is it has put alot of doubt in my mind now as to whether they are right about the dose just keeping my system aggravated and that I’m not going to stabilise here, even though I stabilised so well for 10 weeks previously.

I’ve scared myself silly over the whole thing and need to start using a new syringe soon and am too freaked out to even try doing that with the same dose right now!

I’m now on the obsessed carousel of wtaf to do to move forward at this stage as even after holding 10 months I’m no further forward than I was and in fact worse now than the first wave.

Sorry this is such a long post but I’d really love to hear others thoughts on what to do.

Hugs to everyone you are all such brave hearts 💕

Edited September 17Sep 17 by Emsy

Hey @Emsy I’m so sorry that the folks from the prescribed drug support service showed such a fundamental lack of understanding of your situation and the kind of harm these drugs can do. I’m not familiar with that service, are they supposed to know about tapering and withdrawal?

I have to say I think this whole idea about being on such a small dose keeping your system destabilized is absolute garbage. I have spent an unreasonable amount of time reading books and watching YouTube videos about drug harm and deprescribing lately and I have never come

across anyone making a claim like that. We constantly see people slowing their tapers down and doing long holds at low doses — why would that be such a standard approach if low doses are inherently destabilizing? It makes no sense and I think is the product of complete ignorance to be honest.

I suspect you’re right about the omeprazole destabilizing you and that continuing to hold is the way to go. If we take into account the PPI disruption you’ve really only been holding everything stable for a couple months. I know that doesn’t make it easier but I think you’re on the right path and stabilization will come for you 💜🫂

Thanks so much for your reply @SarahMc and yes they cover North Wales and support people to come off benzos, antidepressants, opiates and Z drugs. The team ‘on the ground’ so to speak all come from different backgrounds but the group supervision they have is with a woman from a drug and alcohol addiction background which as we know is a total different kettle of fish!

I’ve said I want to give holding some more time as I suspect this stabilisation is going to take longer than the first wave took for many reasons.

And thank you for pointing that out Sarah, it’s so easy for me to get stuck on the ‘10 month hold and no better’ story when actually it was 4 month wave, 3 month window, 1 month moderate wave, omeprazole, 2 month bad wave.

Really appreciate your input here as always 💕

1 hour ago, Emsy said:

I’ve said I want to give holding some more time as I suspect this stabilisation is going to take longer than the first wave took for many reasons.

I’m really glad you stuck to your guns, I know that’s not always easy under pressure from the supposed ‘experts’, especially when you’re feeling vulnerable! That shows a lot of strength 💪🏼💜

1 hour ago, Emsy said:

And thank you for pointing that out Sarah, it’s so easy for me to get stuck on the ‘10 month hold and no better’ story when actually it was 4 month wave, 3 month window, 1 month moderate wave, omeprazole, 2 month bad wave.

It can be really easy to forget the better times and lose perspective when we’re in the thick of it. There’s no reason to think you can’t stabilize again when you had such a lovely bright, long window not so long ago.

1 hour ago, Emsy said:

Really appreciate your input here as always 💕

Anytime 😊

Hey @Emsy Sorry to hear about your experience with the Deprescribing Clinic. It's shocking in someways but not in others. It seems pointless having such a clinic if it is staffed with people who no less about WD than we do.

As someone who took Mirt for 6 weeks and then was told to CT the drug I can assure you there is no quick happy ending after you stop (as Im sure you are aware). When you are on the drug you have control, you can hold, taper, slow the taper, make choices about doses, once you are off the doctors wont be interested in you after a couple of weeks, they will have run out of options and you'll be left fighting on your own. Good for you sticking to your guns.

One positive I can see, which is a very much passed from Dr H I think, is the 'patient lead' approach, at least they recognise this, it alone will save many people from unnecessary I think.

As Sarah said, you haven't been on this hold 10 months, some people have to hold 12-18 months for things to settle, you are only a few weeks in, lots of room for improvement there.

Thanks @Chippy

I’m aware my own mental health is starting to slide now from the loneliness and isolation of all this so this is adding to my stress and fear.

Trying to find a withdrawal aware therapist in the UK is so hard though and the few I’ve found are well out of my price bracket.

Very good point about the NHS support once I’m fully off. If there is no taper to support then as you say I’m off the books. The cynic in me wonders if this is why the GP wants me off asap!