@ExLexaBro I'm a psychiatrist also in WD. I prescribed SSRIs for OCD all day, every day because that's what the NICE guidelines demanded otherwise my NHS patients couldn’t qualify for psychology (had to be on meds, seriously). Let me tell you how many of those people benefitted. ZERO. Hand on heart, it made no jot of difference for 80% of them. I suggest getting ERP again if you can afford it and skipping the RI. It isn’t a long term solution really.

33 minutes ago, Sminismoni said:

@ExLexaBro I'm a psychiatrist also in WD. I prescribed SSRIs for OCD all day, every day because that's what the NICE guidelines demanded otherwise my NHS patients couldn’t qualify for psychology (had to be on meds, seriously). Let me tell you how many of those people benefitted. ZERO. Hand on heart, it made no jot of difference for 80% of them. I suggest getting ERP again if you can afford it and skipping the RI. It isn’t a long term solution really.

How is this not being pushed back against?

12 hours ago, Sminismoni said:

I suggest getting ERP again if you can afford it and skipping the RI. It isn’t a long term solution really.

@ExLexaBro No one should be looking at RI as a long term solutions IMO. I agree these drugs don't help our mental health. RI is not to help an 'underlying condition', only to answer the brains call for the drug it has become dependent on. Big difference.

12 hours ago, Sminismoni said:

I'm a psychiatrist also in WD. I prescribed SSRIs for OCD all day, every day because that's what the NICE guidelines demanded

Makes me sad

12 hours ago, Luke said:

How is this not being pushed back against?

@Luke The UK has 2 NHS tertiary, specialist centres for severe OCD, one on London, another in Kent. The referral criteria for both state the patient must have had trials of two SSRIs at maximum doses for 12 weeks each, and a trial of Clomipramine (a tricyclic antidepressant) AND have trialled augmentation with antipsychotics. Without this, patients can't be referred. It is based on NICE Guidelines and these draw heavily from meta analyses amd randomised controlled trials, and are supported by the Maudsley Prescribing Guidelines.

6 minutes ago, Sminismoni said:

@Luke The UK has 2 NHS tertiary, specialist centres for severe OCD, one on London, another in Kent. The referral criteria for both state the patient must have had trials of two SSRIs at maximum doses for 12 weeks each, and a trial of Clomipramine (a tricyclic antidepressant) AND have trialled augmentation with antipsychotics. Without this, patients can't be referred. It is based on NICE Guidelines and these draw heavily from meta analyses amd randomised controlled trials, and are supported by the Maudsley Prescribing Guidelines.

That is absolutely shocking! Those poor people are likley getting to those centres already really harmed! What actual use are the centres? Do they have any non drug techniques/options that they use to help patients or is it just more drugs?

13 hours ago, Sminismoni said:

@ExLexaBro I'm a psychiatrist also in WD. I prescribed SSRIs for OCD all day, every day because that's what the NICE guidelines demanded otherwise my NHS patients couldn’t qualify for psychology (had to be on meds, seriously). Let me tell you how many of those people benefitted. ZERO. Hand on heart, it made no jot of difference for 80% of them. I suggest getting ERP again if you can afford it and skipping the RI. It isn’t a long term solution really.

Thank you for the reply.

Yes I will bot reinstate unless I can no longer bear the pain. It's been hell already and I don't want to go back to that hell. Meds aren't the answer.

1 hour ago, Chippy said:

@ExLexaBro No one should be looking at RI as a long term solutions IMO. I agree these drugs don't help our mental health. RI is not to help an 'underlying condition', only to answer the brains call for the drug it has become dependent on. Big difference.

Yes I just want some relief. I really can't bear another year or two like this. I can not function and I just want to be normal again.

2 minutes ago, ExLexaBro said:

Yes I just want some relief. I really can't bear another year or two like this. I can not function and I just want to be normal again.

Im sorry to read @ExLexaBro I'll not say more about your RI here, poor @Its-me-Rosie is having her thread hijacked a bit too much already today. If you want to talk more about RI you can post on your thread about it.

9 hours ago, Sminismoni said:

@Luke The UK has 2 NHS tertiary, specialist centres for severe OCD, one on London, another in Kent. The referral criteria for both state the patient must have had trials of two SSRIs at maximum doses for 12 weeks each, and a trial of Clomipramine (a tricyclic antidepressant) AND have trialled augmentation with antipsychotics. Without this, patients can't be referred. It is based on NICE Guidelines and these draw heavily from meta analyses amd randomised controlled trials, and are supported by the Maudsley Prescribing Guidelines.

I understand this, however if psychiatrists are prescribing medications that they are almost constant observing have no benefits, for which long term harms are becoming clearer and clearer, purely to get referrals- where is the pushback?

Especially with antipsychotics that are objectively proven to have permanent harms with a diagnostic criteria for them?

Tardive dyskinesia - Symptoms, diagnosis and treatment | BMJ Best Practice

You can PM me if it is more appropriate to keep it off of Rosie's thread.

7 minutes ago, Luke said:

I understand this, however if psychiatrists are prescribing medications that they are almost constant observing have no benefits, for which long term harms are becoming clearer and clearer, purely to get referrals- where is the pushback?

Especially with antipsychotics that are objectively proven to have permanent harms with a diagnostic criteria for them?

Tardive dyskinesia - Symptoms, diagnosis and treatment | BMJ Best Practice

You can PM me if it is more appropriate to keep it off of Rosie's thread.

Sorry to interject, but since I used an antipsychotic, even at a low dosage, for more than 3 months I can assume my symptoms are forever? Or did I misunderstand?

5 minutes ago, MischaDE said:

Sorry to interject, but since I used an antipsychotic, even at a low dosage, for more than 3 months I can assume my symptoms are forever? Or did I misunderstand?

Do you have Tardive Dyskinesia?

People can and do recover from TD, but symptoms can persist for a long time or seemingly permanently for some. I would say it's unclear why or whether further drug interventions then worsen it and so on.

1 minute ago, Luke said:

Do you have Tardive Dyskinesia?

People can and do recover from TD, but symptoms can persist for a long time or seemingly permanently for some. I would say it's unclear why or whether further drug interventions then worsen it and so on.

I don't think so, I do have akathisia-like states sometimes and I noticed sometimes as I am falling asleep I might do the odd jerky hand movement but not like all the time. It's mainly feeling terribly injured and in pain.

Also I did not mean to hijack the thread, so I am sorry about that, I just got a bit worried here.

Oh and I do have an inner buzzing, like a little tremor sensation inside my upper body, but that is something everyone gets on here, not just people on antipsychotics, am I right?

@MischaDE I was talking specifically about TD, which you don't have. I would try not to worry.

Anyway, let's steer the thread back to the clear progress towards recovery @Its-me-Rosie is making.

Well I’m

Back on, on a Sunday, which I try not to even use my phone at the weekend so it’s a sign I need some help 😞

I don’t understand my recovery pattern.

I get these good windows of which the last one was so sparkly, but I’m now in a wave that so so intense it’s like I cannot see out of it at all.

All hope is gone, l feel so gloomy, so low, so so anxious, like my whole body is full of electricity ⚡️ like this will never end. It lifts a bit then bam 💥 back in it. It feels like acute.

I’ve been going over my history and I was doing so much better months 11-13, my wave in month 14 was a huge setback which I’m sure was caused by stress, it lifted for a few days then I got a virus and another wave… I had a good 2 week window before this current wave but it feels impossible to remember in this moment. I feel less capable, less functional and whilst my looping dark thoughts remain fewer.

I still feel incredibly sad.

My main symptom is still this intense anxiety that then makes me feel so hopeless. It lifted for an hour yesterday and I feel so much more hopeful and better. It’s absolutely crippling when it’s here, like the whole of my insides are in a tight ball and there’s no point to anything as

I’d love to hear from anyone who’s experienced this and found improvement or ways to help it. Currently I feel like I’ve tried everything and nothing helps. Accepting it and floating Claire Weeks style doesn’t help! It’s impossible when it’s this intense.

I know for some of you 16 months won’t seem like long, but I’m suffering so much today I feel like I’m never going to heal. Any words of wisdom or stories of hope helpful.

I had this anxiety feeling ever since my Compazine injury, Prozac made it worse initially and then eased it off. Every time I tapered it came back along with the intrusive thoughts but would ease off again and I was functional and able to work etc.

Since coming off Prozac it’s skyrocketed, it’s my main symptom and I’m so fearful now that it will never ever go away. Even though I’ve had breaks from it.

What I’m really struggling with is the intensity of it getting worse when I feel at this stage it should be getting better! I read so so SO many stories and people often say they feel their Symtoms slowly improve. This symptom when it comes is just as bad as ever.

Hope welcome and gratefully received on a very tricky Sunday.

Thanks

Rosie

Wanted to do a small positive update to the above.

We had a family event today that I really didn’t think I could go to as I’ve been so tearful and feel like I’m about to jump out of my skin.

I decided it may help me to go and whilst it didn’t overly help, I did manage to sit mostly for the meal and chat and appear ‘normal.’ But what is positive and what I need to reflect on and try to be grateful for is that my brain wasn’t constantly looping with dark morbid thoughts the whole time.

This time last year we were at a family wedding and I was 4 months off my meds. I remember feeling extremely anxious like I was today (sadly I really don’t think in my waves that anxiety is much improved) but my brain was also looping constantly about death. I remember it clearly. Just watching my cousin walk down the Aisle thinking ‘well there’s no point to this we are all going to die.’ I mean talk about awful 😞

I didn’t have that today. I sat in the lovely gardens of a stately home and I thought ‘I wish this feeling would f*ck off so I can enjoy these gardens’ and I thought ‘I can’t wait to be healed.’

It’s been a whole year and I’m obviously in a wave today so I can’t say much else that’s overly positive, but I think I needed to just reflect upon that here.

My looping brain was a symptom I NEVER EVER thought would go, just like the anxiety I now feel like will never go, I felt exactly the same about my brain and I know I did.

I felt 100% hopeless about it.

The thoughts are still there but much less often and they don’t loop. They just pop in and then go away again.

I need to remember that if this symptom can go so can the anxiety. It’s going to be my most stubborn symptom I just know it, but it will go one day and I need to remain patient 🙏

Thanks for reading

NB: just to clarify I had the looping dark thoughts since my Compazine injury in 2023. They never fully went away even on the Prozac and would come back relentlessly when tapering. This past 7 weeks is the quietest they’ve been since March 2023…..

🙏🙏🙏🙏🙏🙏🙏🙏

Edited June 21Jun 21 by Its-me-Rosie

41 minutes ago, Its-me-Rosie said:

My looping brain was a symptom I NEVER EVER thought would go, just like the anxiety I now feel like will never go, I felt exactly the same about my brain and I know I did.

I felt 100% hopeless about it.

The thoughts are still there but much less often and they don’t loop. They just pop in and then go away again.

I need to remember that if this symptom can go so can the anxiety. It’s going to be my most stubborn symptom I just know it, but it will go one day and I need to remain patient 🙏

That’s amazing! Thanks so much for posting this. I think almost everyone on here feels like they have at least one symptom that’s the worst and won’t ever heal. Really glad you were able to notice that the looping thoughts have gone 😊. You’re absolutely right that the anxiety will go too, in time, even though it feels so torturous right now. All the best to you 💜

Thanks @SarahMc

I always believed that the thoughts triggered the anxiety but here I am after about 7-8 weeks of a clearer mind and the agitation I feel is pretty darn bad, so clearly they didn’t!

Maybe as time goes on without as many dark thoughts my anxiety will slowly calm down.

In the meantime I’ve decided to ask my doctor if they’ll do a B vitamin blood test on me. I’ve considered taking vitamin B6 for a while now as I get so much tingling in my hands and feet, and restless legs at night but I’ve been too scared as it was documented on SA that it can be activating.

I’m going to see if I can get a blood test to at least determine my levels of B6/12 and folate.

I’m also going to start lifting some very small weights very gently. I am not really doing any exercise other than light walking and I feel I’m making very little movement forward it can’t hurt ?? To add in just 5 minutes morning and evening of some slow steady strength training.

All the best with your healing

Hoping for a sparkly window soon

Love

Rosie x

5 hours ago, Its-me-Rosie said:

I always believed that the thoughts triggered the anxiety but here I am after about 7-8 weeks of a clearer mind and the agitation I feel is pretty darn bad, so clearly they didn’t!

Maybe as time goes on without as many dark thoughts my anxiety will slowly calm down.

I’ve also thought that some of my psychological symptoms were linked to others — for example I thought that my brain fog was causing my depressive symptoms, but recently I’ve been having very foggy days without depression, so I guess not! It’s so hard to find patterns in all of this, and often as soon as we identify a pattern it changes anyways 🤦🏼‍♀️

5 hours ago, Its-me-Rosie said:

I’m also going to start lifting some very small weights very gently. I am not really doing any exercise other than light walking and I feel I’m making very little movement forward it can’t hurt ?? To add in just 5 minutes morning and evening of some slow steady strength training.

I’m a big fan of exercise in WD, but I’m lucky in that my physical symptoms are relatively mild and I’m not exercise intolerant. I think some gentle weightlifting is a great idea, but if it’s a new activity for you just start slow and listen to your body! Hope it goes well 😊

Hello everyone

I made a decision in my own mind to not come on here unless I could post a noteworthy update!

I thought I wouldn’t come on for 17 months unless there was some positivite change and assumed I wouldn’t be on for a while.

I’ve decided to come on today to post some Postive change that has surprised me.

For the past week my gut has resolved, or at least, seems to have!!

I’ve had daily Diarreah now for many months. Initially I had it for 5-6 months and it eased off a little but not totally. It came back terribly in February and so I had very bad daily Diarreah for 4.5 months. No end in sight.

I have tried various diets, cutting out dairy and gluten made no difference. However. Last week I decided to try reducing my gluten again as I want to be low carb anyway…

Two days later I had a normal trip to the loo. Almost a week later it’s been normal every day.

No horrible squirming, no intense pain or pressure. Just a normal loo trip! The first normal trip for 16.5 months.

This feels quite major. Im hoping it stays this way. I waited a week to update in case it was a one day fluke!

As a small side note I’ve had plenty of good or OK days the past two weeks. Not perfect. But OK and manageable.

All the best

Rosie xx

Ps just to say I’m not Celiac as I had a test about a month ago so it may just be that gluten was irritating my gut.

Why it didn’t work cutting it out last year I don’t know! But for some reason this time around it has.

Maybe last year it was just too bad for gluten removal to make a difference 🤷🏼‍♀️ and now it’s healed a bit removing it made all the difference 🫠 confused! But not overthinking it x

30 minutes ago, Its-me-Rosie said:

Hello everyone

I made a decision in my own mind to not come on here unless I could post a noteworthy update!

I thought I wouldn’t come on for 17 months unless there was some positivite change and assumed I wouldn’t be on for a while.

I’ve decided to come on today to post some Postive change that has surprised me.

For the past week my gut has resolved, or at least, seems to have!!

I’ve had daily Diarreah now for many months. Initially I had it for 5-6 months and it eased off a little but not totally. It came back terribly in February and so I had very bad daily Diarreah for 4.5 months. No end in sight.

I have tried various diets, cutting out dairy and gluten made no difference. However. Last week I decided to try reducing my gluten again as I want to be low carb anyway…

Two days later I had a normal trip to the loo. Almost a week later it’s been normal every day.

No horrible squirming, no intense pain or pressure. Just a normal loo trip! The first normal trip for 16.5 months.

This feels quite major. Im hoping it stays this way. I waited a week to update in case it was a one day fluke!

As a small side note I’ve had plenty of good or OK days the past two weeks. Not perfect. But OK and manageable.

All the best

Rosie xx

That's such good news @Its-me-Rosie . I know how debilitating bowel problems can be. What a relief!!

1 hour ago, Its-me-Rosie said:

Hello everyone

I made a decision in my own mind to not come on here unless I could post a noteworthy update!

I thought I wouldn’t come on for 17 months unless there was some positivite change and assumed I wouldn’t be on for a while.

I’ve decided to come on today to post some Postive change that has surprised me.

For the past week my gut has resolved, or at least, seems to have!!

I’ve had daily Diarreah now for many months. Initially I had it for 5-6 months and it eased off a little but not totally. It came back terribly in February and so I had very bad daily Diarreah for 4.5 months. No end in sight.

I have tried various diets, cutting out dairy and gluten made no difference. However. Last week I decided to try reducing my gluten again as I want to be low carb anyway…

Two days later I had a normal trip to the loo. Almost a week later it’s been normal every day.

No horrible squirming, no intense pain or pressure. Just a normal loo trip! The first normal trip for 16.5 months.

This feels quite major. Im hoping it stays this way. I waited a week to update in case it was a one day fluke!

As a small side note I’ve had plenty of good or OK days the past two weeks. Not perfect. But OK and manageable.

All the best

Rosie xx

Fantastic news Rosie! :)

@Its-me-Rosie You mentioned diarrhea and nausea. Can I ask you if you have any other GI symthoms?