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Ooj64

Hi

i live in Cambridge. Keen to meet up or chat to anyone going through withdrawal from Seroxtat. 

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Ooj64

I have been slowly reducing seroxtat over the last year. I’ve reduced from 50mg to 10mg and then finally last week I dropped from 10 to nothing - I’m thinking I may have been too hasty! I’m getting lots of brain zapping which I am coping with but then in the evenings and overnight I am having random panic attack’s which are terrifying. Has anyone else been through something similar?

 

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kiki2015

I'm also interested in participating. I live in London.. I have Tardive dystonia. I have self diagnosed myself. I'm sure it's permanent. I 've tried 5 times or more to come off medications and always resisted it. 

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Nelly

 Hello 

I live in north wales x

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Heal95

Hi I’m from the East Midlands 

I would like to meet up with others going through this 

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kiki2015

Any psychiatrists in London, the UK who will diagnose tardive dystonia?

 

Hi I've been on this forum for a while. I'm looking for a neurologist or psychiatrist who will diagnosed tardive dystonia/dyskenesia. Please can someone help me?

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ChessieCat

 

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alexrosear
On 6/13/2019 at 6:14 PM, ChasingRainbows said:

@IndiaI would love to meet up also. I can give all interested parties my Whatsapp/Viber and we can come to mutual time and date. 

 

On 6/6/2019 at 9:51 AM, Purplerain said:

 

Count me in as well! x

 

On 5/14/2019 at 4:40 PM, Ruthmcg said:

@India that's a good idea.....I am really up for meeting up informally.

 

On 5/11/2019 at 9:03 AM, Ruthmcg said:

 

Hello there India, wondering if this got started at all. If so, would be interested,

Best regards.

 

On 2/13/2019 at 12:22 AM, Kronos18 said:

Hi.I’m in UK, London.

 

 

Forgive me if mistaken, but it seems as though nothing has come of this?

If so, please PM me your phone number and I can create a Whatsapp group to arrange a meeting on ?

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alexrosear
On 2/27/2017 at 2:03 AM, Happycat said:

Hello :) :):)

 

I am new to this website.

 

Is anybody on here from London? I would love to make some friends from London :)

 

Thanks

Hanako

 

On 6/13/2019 at 6:14 PM, ChasingRainbows said:

@IndiaI would love to meet up also. I can give all interested parties my Whatsapp/Viber and we can come to mutual time and date. 

 

On 6/6/2019 at 9:51 AM, Purplerain said:

 

Count me in as well! x

 

On 5/14/2019 at 4:40 PM, Ruthmcg said:

@India that's a good idea.....I am really up for meeting up informally.

 

On 5/14/2019 at 3:56 PM, India said:

I will 

@Ruthmcg We could start it informally. Like a meet-up in a coffee shop once a month.  I’ve been quite unwell with a mix of health issues so this month is out . I called up MIND today.. asked about any support groups or chance of a future group . Reply : contact your gp or pharmacist!! The usual. I feel we need someone strong to run it. It’s incredibly difficult when you are fragile to think of trying to get it together.

 

On 2/24/2019 at 5:22 AM, ChasingRainbows said:

Anyone from London, UK? 

Created this for all interested parties 

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India
On 10/3/2019 at 2:09 PM, alexrosear said:

 

 

 

 

 

Created this for all interested parties 

I’d love for there to be a London group but I don’t have the strength to run it. I feel like it needs to be someone in later recovery and perhaps in collaboration so as to ease the burden. 

With this much pain, there needs to be a strong container.

What do you think? @kiki2015

@Ruthmcg @ChasingRainbows @Purplerain@Happycat

 

 

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India
On 10/3/2019 at 2:09 PM, alexrosear said:

 

 

 

 

 

Created this for all interested parties 

@alexrosear i’d love for there to be a London group but I don’t have the strength to run it. I feel like it needs to be someone in later recovery and perhaps in collaboration. 

With this much pain, there needs to be a strong container.

 

Here is the first one recently set up in Worcester. Maybe someone could contact group leader? Maybe he has suggestions.

 

https://www.worcesternews.co.uk/news/regional/17947350.support-group-set-worcester-help-people-get-off-addictive-prescription-medication/?ref=rss

 

Ian Singleton runs one at The Tranquilliser Project in Bristol.

 

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India

Also, might be worth contacting James @

http://www.letstalkwithdrawal.com/about-me/

He’s interviewed quite a few WD sufferers.

There is a Facebook group. If you start the group maybe it could be put on the group’d  notice board. 

 

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Nelly

Hello 

is there anyone from North Wales/ Cheshire/ Shropshire who would be interested in setting up a group/meeting up? X

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India

@Nelly good luck. The more face to face groups the better! 

 

@alexrosear Also, I wonder if The Philadelphia Association of Hampstead might be interested in hosting or providing guidance on a group. They have charity status. It was founded by R.D.Laing in the 60s. He was one of the critical or anti-psychiatrists along with Szasz.

https://www.philadelphia-association.com/

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DeterminedAnna

Liquid Seroxat shortage in the UK until January 2020:

 

https://psnc.org.uk/our-news/seroxat-paroxetine-20mg-10ml-oral-solution-out-of-stock-until-january-2020/

 

Sorry if this has already been shared, but thought it might be important to people in the UK using liquid Seroxat to taper.

Only found this out on Friday (22 November) after a frustrating experience with my local, regular (Well) pharmacy whose staff are clueless about antidepressant withdrawal and why it's vital to not stop abruptly. Tried two independent pharmacies immediately after – no luck – and then a LloydsPharmacy which, without much confidence, said they might be able to get me my prescription by Monday (25 November).

After crashing in January having got down to 5.96mg after 20mg for 17 years, I am only just stabilising, 11 months later, having updosed to 7.72mg in May. Friday's discovery that I might be thrown back into withdrawal sent me into panic that I've not had for months. Is it possible to be traumatised by withdrawal?

Anyway, I ordered this repeat prescription from my GP AFTER this nationwide alert and my GP didn't inform me of the shortage. My GP should be very aware of this because I've been in and out of local mental healthcare this year thanks to Seroxat withdrawal, and leaving me without liquid Seroxat will inevitably be more troublesome (and therefore costly to local NHS) than sorting my prescription proactively.

Luckily, on returning home I realised I have two spare bottles of liquid Seroxat that I kept when my GP mistakenly prescribed too much in the past.

 

My advice – when possible, get yourself some backup bottles for these situations (when it's available again, try to get an extra bottle from your GP). Yes, you can make liquid from Seroxat tablets, but be aware that changes to formulation and dosing can have effects, so personally I try to stick with stable routines.

If you're due to get a liquid Seroxat prescription before January, try to do so in person, with plenty of time before you run out of your current bottle, and show your GP the above link if necessary.

 
UPDATE 25 NOVEMBER 2019: further to the above, my local LloydsPharmacy can't get hold of liquid Seroxat. Local mental health team suggested I switch over to 10mg tablets in case the shortage continues (I'm still on 7.72mg). After months of explaining how sensitive I am to dose changes, they clearly still don't get it – and how reluctant I am to increase my dose and backtrack on my holding for nearly seven months, especially as it's only been in the last month that I've seen a return to relative normality. Think it might be time to revisit this... 
Edited by DeterminedAnna

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Boris

I'm in the Manchester area.

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Harriet8

Hi GB members,

 

Does anybody know how to find out if/where there are compounding pharmacies in the UK?  I am able to take the drug I am currently tapering (Zopiclone) to a pharmacy in Luxembourg and have capsules made up at the dose I require.  I am having to reconsider living arrangements and obviously high on the list is access to compounded drugs and doctors who will prescribe.

 

Any experience/info/pointers would be greatly appreciated.

 

Thank you,

 

H8

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Abdullah

Anyone near Chelmsford, Essex? 

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lxjuice
On 12/28/2019 at 5:22 PM, Harriet8 said:

Hi GB members,

 

Does anybody know how to find out if/where there are compounding pharmacies in the UK?  I am able to take the drug I am currently tapering (Zopiclone) to a pharmacy in Luxembourg and have capsules made up at the dose I require.  I am having to reconsider living arrangements and obviously high on the list is access to compounded drugs and doctors who will prescribe.

 

Any experience/info/pointers would be greatly appreciated.

 

Thank you,

 

H8

There is this thread 

 but I have no personal experience with compounding pharmacies. Why can't you crush the tablets, mix into water and dose volumetrically? It would probably taste more disgusting than a shot of sambucca but should work and be a lot cheaper if you are paying for it.

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Harriet8
On 1/27/2020 at 11:52 AM, lxjuice said:

There is this thread 

 but I have no personal experience with compounding pharmacies. Why can't you crush the tablets, mix into water and dose volumetrically? It would probably taste more disgusting than a shot of sambucca but should work and be a lot cheaper if you are paying for it.

Thank you very much, @lxjuice.  That's really helpful.

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Altostrata

Peer support group in North Wales: https://prescribedmedicationwithdrawalpeersupportprestatyn.org/
 

Quote

 

We are a team of two at present. Our aim on this page is to give you an idea of WHY we are here.

 

Both of us, in our differing ways, are affected by withdrawal from antidepressant and other prescribed psychotropic drugs. One of us is the person actually PRESCRIBED these drugs over the past 15 or so years. The other is one of the persons who took on the role of CARER.  We feel that BOTH, plus others around us, have been affected by our role in this story.

 

A little over three years ago, the story moved on from one of adverse reactions to the prescribed medications to a WITHDRAWAL JOURNEY. Again, this affected all concerned and has been a mixture of intense withdrawal reaction periods and an awakening of the real person that had been hidden by prescribed drugs for so long.

 

We found very little support for these journeys. We were met with disbelief as often as not. Whilst continuing under the guidance of the professionals concerned, we trusted that they would, eventually, find something that would actually stabilise matters. Slowly but surely we began to doubt that this was going to happen. A personal decision was taken to suggest withdrawing from the prescribed drugs with professional guidance. The ‘caring team’ were on board and the leap into the dark took place!

 

Searching for support from others on the same journey proved fruitless. We hunted online and found a few sites which were useful. However, we still felt the need for FACE TO FACE MEETINGS about what we were now facing in withdrawal. We failed to find any such support – or at least in our area. We decided to have a go at setting up such a group in our home town of PRESTATYN, DENBIGHSHIRE, NORTH WALES.

 

 

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Nelly

Hi

i live in Llangollen, and would like to be part of your support group. 
I haven’t posted on here fir sometime, as I follow a group on FB. I am still tapering and have held at 62.5 mg since October 2019. I think I sent you an email which I found on the WARM network website. 
Look forward to hearing from you x 

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HopefulDawn
On 7/21/2016 at 1:19 PM, WiggleIt said:

The lawsuit is for people in the US who developed movement disorders from psych meds.

Im very late; I am in the UK and got a movement problem immediatly after an adverse affect to sertraline. I am in the UK though. I don't know how to go about contacting a lawyer. Do you or anyone else know if it is possible to do that in the UK and how? I reported my symptoms with the 'Yellow card scheme'.  An issue is though I saw a neurologist who did an MRI for my cranial nerves and there were no problems (I thought the meds might have caused me to develop MS because of some symtpoms but thats not the case) and the movement issue I had straight after and sometimes now if I do too much has been classed as a movement disorder caused by anxiety but since I now have my anxiety 100% under control (it has gone away 100%) but i'm still getting physical symptoms I know that isn't the case.

 

I've been told my symptoms are psychogenic though looking back they were so obviously drug induced expecially since they all happened after just 2 pills; but I took the drs word for it thinking in any case it would do good to reduce my anxiety if it is a physical/organic issue or not and if it is a physical condition it would be found out to be so in time but there was nothing more I could do to stop the symptoms so it would be best to try and control what I can and try and tame my anxiety. I suppose I am hoping for too much for it to be officially recognised as caused by the sertaline?

I did have a nurse say to me that it is a nasty drug once so perhaps they have seen other patients come in with issues on it?

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Harriet8
On 6/5/2019 at 8:19 PM, Harriet8 said:

Hi, I live in Brighton (although currently staying with parents in Luxembourg because unable to care for myself due to condition).  Housebound, so v tricky to meet up.  But really glad to post here.  Hoping, hoping, hoping there's a way through.  Things so uncertain just now, could find myself based in London for a while, or back at home in Brighton; or in Luxembourg..... 

 

Anybody here have any experience of psychiatrists who are understanding, informed about this stuff?  I am pursuing possible appointment with a Dr Benito (recommendation from this website).  She's in London.  I think she helped someone on here with a taper.  I have complex array of symptoms, have taken many many meds, and currently on 4 and not stable.  So am deeply afraid of being deemed "beyond help" and receiving that message again, and suggesting a see a neurologist or....  

Hello Great Britain members,

 

I haven't posted for a while.  In a very bad way.  The combination of such a severe condition and the adversity of my situation is becoming close to truly unbearable and unsustainable.  I am clutching at straws to try and see what, if anything, I can still do; how/where I might still have some agency to try and improve things.

 

My question today: how have you managed to find professional help in your area?  Have you used a GP (who is presumably informed/understanding enough to support you)?  Have you used a psychiatrist?  I have a particularly severe condition (housebound, living between bed and sofa: severe hyperacusis, tremors, spasms, seizure patterns, hostile outbursts....), so be most helpful to hear from others who are dealing with polypharmacy and/or severely disabling conditions due to this.  I have spent a year now, seeing neurologists, neuropsychiatrists, psychiatrists, addiction specialists....  I then, unfortunately, hit a very challenging living situation which has knocked me and just exacerbated everything.  It is so confusing and challenging: on the one hand, it is slowly sinking in for me (and I apologise to all the moderators, Altostrata and others who tried to help a year back and became frustrated ?) that informed, understanding doctors simply don't exist; on the other hand, sites such as Laura Delano's emphasise the importance of having close monitoring medically when doing the work of coming off these drugs.  Given that my nervous system is clearly in a terrible state, I have been tearing my hair out (literally) trying to reconcile these two things.  And, my life is literally decimated, I am likely not going to be well enough to return to my own home due to my condition.  So, I am probably looking at having to move.  I feel like the central point of determining where that new home is, is where I can access medical supervision (and then, of course, address my care needs, some means of connection - the exile from life and living is very damaging....etc). 

 

I will try and garner as much strength as possible to revisit my thread and read up where I can (I am SO exhausted now in the adversity I face and my memory and concentration poorer).  So many questions have arisen from the many consultations I have had with professionals.  Examples:

Do benzodiazepines cause lesions to the brain?

Should I, therefore, have a PET scan to see if I have any such lesions? - I have seizure "patterning" everyday; I can't work out if these are partial seizures, of what kind?  Due to previous 2 attempts at withdrawal?  Due to ECT from 2005?.....🙈

Would a 24-hr EEG be useful?

Electoneuromyography?

......

The most recent possible source of help has come from an addiction doctor who proposes to assess the state of my brain via neurofeedback.  I am not confident about this.  Before I understood that my symptoms were due to all the meds and 2 attempts at withdrawal, I thought I was "just" dealing with trauma.  At that time, I approached a neurofeedback place and did an initial assessment.  The impression I had from this was that there would be very little benefit in attempting neurofeedback whilst taking so many drugs.  So I chose not to pursue it accordingly.  This addiction doctor says he has some kind of algorithm such that he can account for the drugs in making his diagnosis.  But I still do not feel confident that this is a thorough enough means of assessing the state of my nervous system, or indeed if it is possible at all to do this.

 

I find it particularly challenging with limited cognitive resilience and physical impairment (often too weak to sit up and be on the computer) to do the necessary research, wade through all the different opinions, etc.  But, given how severely affected my nervous system is, it doesn't feel wise or safe not to have the support and guidance of a medic.  Since October, I have also been having terrible outbursts of hostility and aggression.  This is getting worse.  I have been unable to make any progress at all with trying to get medical support for this.  I thought it was due to the Zopiclone reduction (which I paused at the suggestion of the doctor, perhaps misguidedly), but it could be the now 18-months on Pregabalin?  It is certainly exacerbated by my sense of powerlessness and feeling utterly trapped by my condition and by my situation (moving twice a day between 2 places).

 

I will try and close and keep as close to concise and clear as possible:

Anyone who can share experiences of how they have found a prescriber they can work with (AND how they access their meds) would be invaluable.

Have you used a GP and/or a psychiatrist or a neuropsychiatrist?

Have you undergone neurological tests as well?  Were they useful/helpful/necessary?

Have you needed to use a clinic or had to have emergency medical help, or feel that you need the reassurance that you can access that if you are at risk of seizure, for instance?

Especially useful would be London/SouthEast, as I expect that is where I will need to be

And anyone who also faces this terrible quandary of hearing a message that doctors simply don't know how to help us, alongside, "you must make sure you get close medical supervision as your case is very severe"😖

 

I will leave it there for now.  I hope some of you have managed to find ways to come together.  I wish I could join you.  To be able to walk, to travel again......there aren't words for what it would mean to me to have that freedom, that agency restored.

 

My very best to you all,

 

Harriet8

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Harriet8
1 minute ago, Harriet8 said:

......

Just to add:

 

I gain most of my knowledge from following others on Twitter.  I see that some very well informed people (who are themselves medics too) have done tests such as genetic/enzyme tests to ascertain how fast or slow a metaboliser they are of the drug they are trying to withdraw from.  Thorough blood tests etc.  Easier when just on the one drug.

 

It can feel so overwhelming when already so ill, barely able to just survive the day.

Do others feels as overwhelmed and confused as I do?  So many tests potentially needed, but I'm not sure.  And costly.  And immensely challenging to travel anywhere to have them, etc...  How have you reached decisions as to what tests you might need to take in order to assess whether you are at risk of x, y or z as you taper.  I think this is probably for another thread.  Apologies.  In the overwhelm.......Sorry!

 

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Altostrata

Just a note: Whether you are a poor metabolizer or fast metabolizer is not relevant to tapering. It is relevant to initiating drugs and it may be the cause of drug-drug interactions.

 

However, you don't need a test to identify drug-drug interactions. Put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php and see if you have any of the interactions. Keep daily notes of your drug schedule and symptoms. If you are having an adverse reaction to a drug, most likely it will be more intense shortly after you take the drug.

 

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Harriet8
On 6/25/2020 at 7:47 PM, Altostrata said:

Just a note: Whether you are a poor metabolizer or fast metabolizer is not relevant to tapering. It is relevant to initiating drugs and it may be the cause of drug-drug interactions.

Thank you, Altostrata.  I know others on Twitter (including a doctor - cardiologist) have had their genetics tested to inform their tapering strategy.  My understanding is it can be useful in deciding whether to take doses multiple times per day or not?  Presumably, also, if I taper one drug (as I was doing, Zopiclone), this potentially then alters the metabolism of the other 3 drugs I take?

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Altostrata

Reducing one drug can alter the metabolism and effect of the other drugs, but the way to find this out is with a daily drug schedule and symptom record, not with a genetic test. Same with interdose withdrawal from benzodiazepine, which does indicate you need to change your drug schedule.

 

The genetic tests are truly not very useful, but attractively sciencey.

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tiredtess

West Country

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