Harriet8: think I have withdrawal syndrome - seeking connection, hope and support for action I can take to heal

[Harriet8]

Hello everyone,

 

I took my first anti-depressant at 21.  I am now 43.  In the years in between, I have had multiple psychiatric admissions, taken many many different medications, some at high doses, some inappropriate for my diagnosis, and for long periods of time, and had 8 sessions of electroconvulsive therapy (ECT).  I am posting here now because I believe I may be experiencing a withdrawal/discontinuation syndrome.  My life has been razed to the ground and I am reaching out, to foster hope, make connection, and see if I can educate and empower myself and find guidance and support to get into healing and recovery.

 

My difficulties began 9 years ago.  The only drug I was taking at the time was Citalopram, and I was reducing it.  The first thing I noticed was increased sensitivity to sound (e.g. hearing the radiators throughout the house I was staying in).  I was working as a counsellor at the time, and I began to have feelings of falling  through my chair when working with clients, a sensation of falling downwards and backwards suddenly.  I then started to feel strange in the car, as if something toxic was coming through the ventilation system, leading me to feel a bit like I wasn't fully there; slightly afraid I would pass out (I never have) or "disappear".  I would pinch my cheeks to try and "come back".  I couldn't understand it.  For 18 months, I followed the initial thinking from my GP, that I had labyrinthitis, and had various auditory system tests.  This revealed nothing.  I then went to the London Balance and Hearing Centre and had a thorough check there.  They found nothing wrong and said that 40 % of people presenting there they referred on to psychiatry.  By this stage, I had stopped driving, stopped working, had considerable difficulties walking - I walked using 2 sticks, and continued to have extreme sensitivity to sound (found the sound of the dishwasher on the floor below almost unbearable).

 

The psychiatrist diagnosed "total serotonin depletion of the vestibular nucleus" with utter conviction (no sample/scan of anything has ever been taken by a psychiatrist in 22 years of treatment), and admitted me urgently to hospital.  I was not depressed at the time.  I was bombarded with medications.  3 weeks later, I went into depression, but the somatic symptoms I had been admitted for continued.  More and more medications were administered.  Eventually, I discharged myself and went to another psychiatric hospital.  They were shocked at the levels of medication I was on (this was 2013) and proceeded to reduce and change the drugs.  I left this hospital in 2014 but my somatic symptoms persisted (difficulty walking, unable to tolerate the sound of the fridges in the supermarket, clinging on to the shelves, tremors in my legs, unable to stand in line....).  By this time, I had a diagnosis of Complex Post Traumatic Stress Disorder (CPTSD) - which I identify with to this day.   

 

This was September 2015.  Because, despite high levels of medication, the symptoms were still present and limiting my functionality (e.g. unable to tolerate short attending a short evening course on social media at my gardening group: I couldn’t cope with looking at the screen, sitting on a chair without sides, or the sounds – and had to leave), I decided to change tack and try a different approach.  That was when I sought out a trauma therapist and a more holistic path.  At this time I was on Quetiapine (250mg at night, 50mg breakfast and 50mg lunchtime), 3g L-Tryptophan, 15mg Diazepam, 60mg Citalopram.  Over the course of 3 years, I brought myself down off the meds in a very measured way, one at a time, titrating at what I thought was a slow pace.  I managed to come off the Quetiapine, L-Tryptophan and Diazepam.  I continued to experience severe somatic symptoms but could walk about a little, go into a bookshop briefly - not able to work or go out for a meal, or the cinema or anything like that.  When I began reducing the Citalopram, my symptoms became seriously bad.  They emerged approx. 2 – 3 months after reductions e.g. 60 > 50 > 40 beginning May 2017, resulted in severe, disabling symptoms by August: severe tremors, terrifying hyperarousal, unable to tolerate sounds at all, using alcohol when necessary literally to be able to tolerate them or walk when necessary.  I made another reduction  40 > 35 > 30 > 25 > 20 from December to April 2018, at which point I became housebound and called the paramedics as I was experiencing states of terror, feeling as if I was about to die, unable to regulate my nervous system at all.  I now know, how terribly and tragically misguided my reduction pacing was.  I wish I could turn the clocks back.  But I can't.  Hence my presence here, and prayers that there is still hope that I might recover my health.

 

The emergency services suggested I increase the Citalopram back up to 30mg, which I did - and then up to 35mg, 3 weeks later.  By this stage, I was housebound, having violent seizure patterning (not seizures - I never lose consciousness), unable to tolerate the sound of using a telephone, unable to stand to wash up or make food.  My therapist began visiting me in my home.  At the time, she and I had been understanding what was happening as partly being a releasing of the trapped energy of the trauma of the ECT which I had when I was 29.  Indeed, the seizure patterning/muscle spasms look very like this.  And my therapist described what she believed was going on in Somatic Experiencing language of "overcoupling": effects of psychological trauma/stress from earlier life + ECT shock trauma + long term use of meds.....all contributing to a dysregulated nervous system.  I still believe this to be the case.  However, very sadly, my therapist reached the point where she felt unable to continue to support me and pointed me back towards psychiatry.  This was utterly devastating to me.  I had derived considerable strength and hope from believing I understood what was happening in my body, that I had agency over its process, and was resourced and motivated by this.  Being advised that all that was left was to go back to psychiatry, felt like the final straw.  I went into severe, suicidal depression.

 

Since then, I have seen several more psychiatrists, 2 neurologists, one neuropsychiatrist.  None of them acknowledge that there is any possibility that psychiatric medications are implicated in my somatic symptoms.  They put them under "medically unexplained" or "functional neurological disorder".  I had 5 weeks in another psychiatric hospital in December 2018 which was largely pointless as I could not bring myself to take further medications, except for the introduction of one, Pregabalin, but at a low dose (because I was looking ahead to having to withdraw off this too eventually, and cautious accordingly.)

 

I am now staying with my parents, in Luxembourg because I am unable to manage on my own in my own home without carers.  I am at the lowest point of my life.  The depression is severe but largely "reactive", ie an understandable response to losing my world - my work, my community, my functionality and all that that now deprives me of.  I am just surviving at the moment.  I hope I can find a way ahead.  I am new to this website.  I wonder how I might best use it to seek support and guidance?  I will list the medications I am currently taking:

Citalopram 40mg

Pregabalin 50mg @ 09.00, 25 mg @ 13.00, 25mg @ 22.00

Diazepam 2mg @ 09.00, 25mg @ 13.00, 25mg @ 19.00, 25 mg @ 22.00

Zopiclone 3.75mg: began tapering under advice of GP 10 days ago, reducing by 1/4 = cutting the pill in half and half again and taking 3/4.  He suggested I taper by 1/4 every 2-3 weeks.

 

I feel trapped in a Catch22: I am unable to function in the world as I am.  My symptoms are prohibitive of most activities and restrict where I can be, even within my parents' home, as my sensitivity to sound is so great and I am unable to be standing for very long due to the tremors.  I am due to see the GP again tomorrow to ask his advice.  I do not have a psychiatrist here.  I am not keen to see yet another psychiatrist unless this person understands the fight/flight/freeze response, believes in withdrawal syndromes and tapering.  My despair lies in the fact that I am sadly not in a position to be tapering really until I have adequate functionality restored.  But I don't know how to restore that, how to address the tremoring and sensitivity to sound.  The advice I have had from psychiatrists is to increase the dose of Pregabalin to quell the tremors.  I am currently on a sub-therapeutic dose. I am reluctant to do this as this will be yet another drug to come off (which holds risks of seizures through withdrawal).

 

Does anybody here have anything they could suggest to help?  I am only just beginning to try to understand what the effects might be, on my nervous system, of extensive use of the drugs I have been on in the past, and am currently on.  In particular, Quetiapine (I was on 800mg in 2005 and reduced over a couple of years - I never had any psychosis; and again 2013 - 2016 at 300mg), Diazepam (30mg in 2013, now 8mg) and Citalopram (60 for many years, now 40mg).  I don't know if everything my body is manifesting is an expression of a depletion of receptors throughout my body?  I am doing an online course on the nervous system and understand the intricacy of it, and how every cell in our bodies is affected by nervous system dysregulation. 

 

What is the next step?

How do I address the somatic symptoms, in particular sensitivity to sound and to gravity: my sympathetic nervous system is "turned up way too high" in response to my standing up = tremors

How/where can I find a clinician to guide me?

I am due to see a Functional Medicine practitioner next Thursday with a view to try trying to do something myself to help heal my system.  Any thoughts on this?

I am also acutely aware that my life situation is such that I feel insecure and at sea.  So, I need to find a way to create a secure base for myself, professionals I trust, decide which country to live in to do this (I will probably be unable to live alone until/unless I can heal this)..... I understand now that my nervous system is picking up cues about safety all the time.  And if my life situation is unstable, it will keep going into fight/flight/freeze in reaction to that too.  So, I need to also do some internal work on finding safety in the midst of uncertainty.

 

This is so challenging.  I feel very grateful to have this space in which to share and hopefully help each other.  Thank you.

 

 

[manymoretodays]

Hi Harriet and welcome,

 

And oh my, I'm so sorry for the struggles and difficulties you've experienced to date.......secondary to the medications/drugs.  I mean I do think that a lot of what you have described might have gone better, if only.......oh if only your increased sensitivities from the get go had been recognized as WD(withdrawal)

And yes, I believe you have been experiencing some WD for some time now.  Complicated by overzealous re-medication and standard psychiatric care.

Harriet, I experienced a lot of the same for many years.

I think you will find the connection, hope, and support you seek here. 

 

How did you taper off the citalopram 9 years ago and over how long of a time period?

 

 Please put your withdrawal history in your signature

If your drug history is very long, the last few years will do. FOR READABILITY, SHORT LINES ARE BEST.

 

• A list is easier to understand than one or multiple paragraphs
• Include ALL drugs, doses, and dates (starting and stopping)
• Any drugs prior to 24 months ago can just be listed with start and stop years
• Please use actual dates or approximate dates (e.g. mid-June) rather than relative time frames (e.g. 3 months ago)
• Spell out months (e.g. "January" or "Jan" as 9/1/2016 can be interpreted as 9 Jan 2016 or 1 Sept 2016)
• Please leave out symptoms and diagnoses

 

Example:

2001–2002 paroxetine 
2003  citalopram 
2004  paroxetine
2008  paroxetine slow taper down to 2016 Aug off paroxetine
2016  citalopram May 20mg  Oct slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg

 

If you edit your signature, the new one replaces any prior signature. It will appear in your signature under all your posts, even your old posts. If you want to save the information in the old signature, copy it and save it in a file on your computer or in a post in your Introductions topic.  * signatures can be created using a phone device, but are not viewable from the same

 

(As of 12/31/13: Signatures are limited to 12 lines of text.)

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1. Click on this link to open the correct page in User Settings:
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2. Enter your signature in the space provided.
3. When you are done, Click on the big black Save button at the bottom.

Just add a few more details to your present medication list and a brief history of your medications.  And you'll have that done.

 

More general information for you, and you don't need to read it all at once, I just think it will be good to have it here for your future reference, until you find your way around the site and get familiar.

 

Here at Surviving Antidepressants, we recommend tapers of no more than 10% of the current dose with at least a four week hold in-between decreases.  The 10% taper recommendation is a harm reduction approach to going off psychiatric/psychoactive or neuroactive drugs.

Why taper by 10% of my dosage?
 

More about what WD is:

Brain Remodelling

What is withdrawal syndrome.

The windows and waves pattern of withdrawal

 

I think you'll find many of your symptoms listed here:

Dr.Glenmullen’s withdrawal symptom list.

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made.  The CNS likes stability. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.

 

And Kudos on your studies and the yearning to learn more about the nervous system.

 

On 5/13/2019 at 7:17 AM, Harriet8 said:

What is the next step?

How do I address the somatic symptoms, in particular sensitivity to sound and to gravity: my sympathetic nervous system is "turned up way too high" in response to my standing up = tremors

How/where can I find a clinician to guide me?

I am due to see a Functional Medicine practitioner next Thursday with a view to try trying to do something myself to help heal my system.  Any thoughts on this?

I am also acutely aware that my life situation is such that I feel insecure and at sea.  So, I need to find a way to create a secure base for myself, professionals I trust, decide which country to live in to do this (I will probably be unable to live alone until/unless I can heal this)..... I understand now that my nervous system is picking up cues about safety all the time.  And if my life situation is unstable, it will keep going into fight/flight/freeze in reaction to that too.  So, I need to also do some internal work on finding safety in the midst of uncertainty.

 

We often promote non-drug coping to help get through some of the nervous system instability.   We have a whole forum devoted to symptoms and self care.  You might find some practices that are helpful there.  Calming, meditative type things.  Non-drug techniques to cope with symptoms

There's a whole indexed list in the first post of the above link that you might find helpful now to explore.

Oh Harriet......it does sound like you have a ton of autonomic nervous system instability going on now........hence the overreactive stress response.   It can and will get better.  I think you are definitely on the right track now.

And I think that you just keep on educating yourself and in this way empowering yourself too!  Then hopefully you can find more and more in the way of helpers on the recovery and healing road.  You are already off to a great start.

 

As far as the functional medicine doctor goes.......I would just proceed cautiously.  I see a functional medicine doctor for my GP.  And I don't think he totally understands the increased sensitivities that I might have now.......due to my past medication/drug use and then subsequent WD.  He does seem to accept however, that I don't want to wind up on massive doses of supplements.  I'm currently more interested in getting my bodies needs met with real food stuff.

As far as finding a clinician goes who understands all this, it can be difficult.  You are currently in Luxembourg now. 

Here is what we have collected to date as far as clinicians internationally who may be familiar with drug/medication effects, tapering, and WD: 

Recommended doctors, therapists, and clinics

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system.

Magnesium, nature's calcium channel blocker 

Omega-3 fatty acids (fish oil) 

 

Are you on any supplements now in addition to your current medication regime? 

 

I think I may have overloaded you with information.......so, again.........just use it as a reference base for now.

 

This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your individual situation, give updates, and just keep a record of your journey.  Other members and moderators will come by here too.

 

Welcome aboard again.  We're glad to have you.

 

Love, peace, healing, and growth,

mmt

Edited May 14, 2019 by manymoretodays
elaboration, additional thoughts

[laydefish]

Hi @Harriet8 & Welcome to the group! Congratulations on cutting down your meds- it's a difficult struggle, but well worth it!  Stay Strong & Hang in there!

[Harriet8]

On 5/14/2019 at 6:20 PM, manymoretodays said:

Oh Harriet......it does sound like you have a ton of autonomic nervous system instability going on now........hence the overreactive stress response.   It can and will get better.  I think you are definitely on the right track now.

And I think that you just keep on educating yourself and in this way empowering yourself too!  Then hopefully you can find more and more in the way of helpers on the recovery and healing road.  You are already off to a great start.

 

As far as finding a clinician goes who understands all this, it can be difficult.  You are currently in Luxembourg now. 

Here is what we have collected to date as far as clinicians internationally who may be familiar with drug/medication effects, tapering, and WD: 

Recommended doctors, therapists, and clinics

 

To read "It can and will get better" has me in tears.  I went to see (another) neurologist yesterday because the GP here felt this was the next step in understanding my condition - I have significant, pretty severe tremors (amongst many other symptoms).  As I expected, yet again this clinician said that there was no way my symptoms could be attributable to psychiatric medications, despite my stressing that their onset had coincided with trying to come of the medications, and indeed worsening as I continued to reduce.  I left in utter despair, feeling severe hopelessness, so alone and afraid that my life is changed beyond recognition and that I will never again live a functional, independent life.   Ooooof!  I hope it is ok to share some of the emotional side of this here.  

 

The neurologist suggested I increase my dose of Pregabalin - I am currently taking a sub-therapeutic dose of 100mg.  She thought hypnosis might help.  She also said that I should stop thinking about the medications and stop trying to understand what was causing my condition, that often we never know and I was just making things harder for myself in trying to pursue an explanation or believing that I could heal this. 

 

I am convinced that I am experiencing the effects of 2 decades of psychiatry.  I won't attempt to see another neurologist.  It is painful to be repeatedly told that what I believe about my condition is completely wrong - and to be offered nothing other than a possible basic patch up, but no actual healing or recovery.  She is not the first to suggest trying to increase Pregabalin.  I haven't done so, so far, because I am wary of setting myself up for yet another/additional lengthy drug withdrawal, and because I'm thinking, "What about the other 3 drugs I'm on.  Are we just going to ignore those, or should we not be focusing on them, since it was their reduction which caused the withdrawal symptoms to arise in the first place?...and/or indeed the Quetiapine I was on too.  Do I need to reinstate that?  I have no idea!" 

 

I feel reluctant, in fact unsafe, to make any further alterations to my medications without seeing somebody who recognises withdrawal issues, believes me, and thinks they could guide me in deciding how to proceed.  I have been at this most severe of states for a year now, deemed "too unstable to work with" by my psychotherapist and osteopath, housebound, and now no longer in my own home.  I am surviving, not living (and it's been 9 years overall so far).  I need to do whatever I can to address this situation.  The little understanding I have gleaned from the website so far would suggest that what I need to do is increase one  (or some) of my drugs to the minimum level necessary for me to be able to stabilise.  And then, with informed support, begin a very slow tapering process.  I think I am looking at many many years.

 

HOW CAN I FIND A PSYCHIATRIST TO GUIDE ME?  I have seen your list of practitioners.  There is nobody in Luxembourg where I am now.   I have posted in the Belgium and France sections but not heard back from anybody with the name of a practitioner.  I have emailed one person in London, UK (Dr Benito).  She said she felt my condition would be too complex for her to manage over Skype, which I can understand.  She had helped one person on this site with tapering.  She didn't answer my question as to whether she recognises withdrawal syndromes (and could, therefore, help once a person was "beyond" tapering, and needed to go back up on a drug - or add something - in order to stabilise).  If needs be, I will consider moving back to the UK in order to be able to see her, if she thought she could help.  My sense is that the people who are daring to speak out and name what is going on are doing so from the relative security of being researchers and academics.   I wonder if Dr Benito would recognise my symptoms as withdrawal?  I suppose I could send her a video of the tremors....I don't really have much of a life whilst my condition remains as it is.  The majority of informed practitioners seem to be in the US.  Do you know if many of them practise online?  It is clearly far from ideal.  I am just trying to do all I can to maintain a sense of agency and find somebody to help guide me with my medication, so that I can begin to stabilise.  I feel extremely challenged by the possibility that I may be disabled for life (and not just in terms of mobility - I can't tolerate sounds, my proprioception is off....so I've lost access to most everything and everyone that used to make life worth living).

 

I may post a video of my tremors on this site to see if anybody else has similar symptoms.  But I am checking with the moderating team to see whether that's appropriate here or not.

[manymoretodays]

Hi Harriet,

Just a reminder to get the signature done.  See my previous post.

As that really helps us all to see where you are at with the medications/drugs now and provides a brief history.

 

Has the Pregablin helped at all with the tremors?

 

And then, please plug in your current medications here Drugs.com interactions checker.

(copy and paste the results right here on your introduction too, when done......if you can)

 

I know we have a member in the UK, who was getting some support from one of the doctors there. 

I'll see if I can track down which Dr. it was, that is still involved, in working directly with others.  

Keep in mind,  I'm not at all familiar with how the NHS works.

 

Dr. David Healy is in the UK, but I don't think he works with others.......directly who have been affected by the meds/drugs.

 

Meantime.....hugs......as I know how that can be.......when it feels like,  no one(outside of peers online) is seemingly interested in your new reality, and understanding.

 

Many of us have been, or are in the same boat. 

Just to have the problem of adverse reactions and effects from these medications acknowledged by prescribers and specialty doctors would sure help a lot!

 

All for now,

Best,

Love, peace, healing, and growth,

mmt

sending patience and good cheer for today!

 

 

Edited May 22, 2019 by manymoretodays

[Harriet8]

Frustratingly, I can only do a rough estimate of my drug signature at the moment because I am not at home and all my diaries and records are in the UK.  But I can put down everything that I can recall for now and edit later.

 

The Pregabalin has helped a bit with the tremors, yes.  But I can also feel it trying to sort of block them (having learned how to track my nervous system through Somatic Experiencing), which I experience as pain.  I don't like the thought of taking a drug to block the fight/flight/freeze that is trying to come out.  And of course, it's another drug to have to come off!  Is your experience that part of the process does include acceptance - and indeed of possibly needing to increase/add meds?  I mean, of course acceptance is huge.  I suppose, a part of me is fighting with all her might for it not to be true, terrified of being disabled and needing carers for the rest of my life.  My entire life is up in the air, so it's really hard to go slowly, to not be able to make any plans at all, not know if I'm right in my diagnosis of what's going on.  There is a lot to grieve, especially as I feel like I haven't really had the chance to start living my life yet.  

 

UK practitioner: Yes, I think that may be the person I saw.  In which case it would have been Dr Benito in London.  But if there is anybody else, it would be really valuable to know the person you have in mind.

 

Your encouraging words are so much appreciated.  Thank you.  I notice that someone has set up a 12 step group.  That must be invaluable.  I don't imagine there is an international/online one?  I will try and engage here for starters - and hope that I can find a clinician who can support me in getting stable soon so that I can feel some sense of hope and possibility that I can get more of a life back.

 

Very best to you too,

 

H8

[manymoretodays]

20 hours ago, Harriet8 said:

Is your experience that part of the process does include acceptance - and indeed of possibly needing to increase/add meds?  I mean, of course acceptance is huge.  I suppose, a part of me is fighting with all her might for it not to be true, terrified of being disabled and needing carers for the rest of my life.  My entire life is up in the air, so it's really hard to go slowly, to not be able to make any plans at all, not know if I'm right in my diagnosis of what's going on.  There is a lot to grieve, especially as I feel like I haven't really had the chance to start living my life yet.  

 

Hi Harriet8,

When I found my way here, it was a couple of years after I had read "Anatomy of an Epidemic" by Robert Whitaker.  I think that was back in 2010 or 2012.  Several other synchronicities occurred for me around that time.  And I realized so much about my own experiences and my own "psychiatric patient career".  Mainly, that I just kept getting sicker and further dis- abled.

So when I arrived here at survivingantidepressants, I was down to just 2 medications to come off of.

And true, sure........I am a bit atypical now.......perhaps, as far as humans go.  But for the most part I don't do the "dissing" of dis-abled to myself.  I'm pretty abled now.

 

I get thrown by so many folks who might define healing or continued recovery, to be something different than what I've found......or where I'm at.  I mean I still compare a lot......sometimes.

 

At this point in time, for me.......I can't accept adding meds/drugs for myself.  
 

I too, hit the terror button.......on thinking I would completely lose my independence at one, or two, or three points in my recovery/healing.  Oh.....maybe yesterday.......  I think it was last week.  Then it passed.

Ah....yes......the grieving. 

 

You'll be amazed soon, I hope........

 

20 hours ago, Harriet8 said:

I notice that someone has set up a 12 step group

 

Yes, we should get the 12 step thread active again. 

AA, and the 12 steps have really helped me a lot. 

 

All for now.

L, P, H, and G,

mmt

 

Yes, do the rough, on the signature.  It's really an important feature here,  and helps us all out quite a bit.  I sure can't remember everyone's meds. Just do the recents if that's all you can manage. 

 

 

Edited May 23, 2019 by manymoretodays

[manymoretodays]

Hi Harriet8,

Here is one for you.  A doctor who specializes in adverse reactions to medications. 

Or some links to, that were given to another member a couple of years ago.

Just click/tick on the arrow there in the right hand corner and it will take you to the full post.

Sounds like he may work with people online.  And yes, let us know if you contact, and if you would recommend so we can add him to the list.

Pffft......I still have not come up with the doctor in the UK, that does do some phone call support.

I will let you know when I remember or find his name as well.

 

You know, I think it WAS Dr. David Healy.  And I do see him listed......in the recommended Drs, etc, thread.  Harriet, again, I'm not sure if Dr. Healy works with people directly........but......

......it was Dr. Ian Singleton, as well, who I was thinking of, as far as doctors in the UK who may offer support.

http://cepuk.org/withdrawal-advisers/

 

And so.....both may be worth contacting, as you make decisions now, as to just how to proceed with your healing/recovery/tapering now.

And let us know or keep us updated, if you will.

 

 

Thankyou,

L, P, H, and growth,

mmt

 

Edited May 24, 2019 by manymoretodays
update

[Harriet8]

On 5/15/2019 at 2:03 AM, laydefish said:

Hi @Harriet8 & Welcome to the group! Congratulations on cutting down your meds- it's a difficult struggle, but well worth it!  Stay Strong & Hang in there!

Belated thank you for your welcome, laydefish.  It's taken me a while to find out how to work the site!  Thank you for the encouragement.  Badly needed just now.  Next step for me is to do my drug signature and try and find a clinician.  I made a mistake in cutting down my meds too quickly.  So, sadly, I think I'm looking at having to increase something in order to stabilise, before I can think about proper slow tapering.  I don't know.  That's what I need guidance with.

 

Just in terms of how the site works, how did you find me?

[RachelSusan]

Hi Harriet,

 

I read your thread and I'm just stunned with what you have gone through. I am so sorry.  I know you are looking for a doctor to help you.  It is sometimes very hard to find a clinician that recognizes that psycho-pharmaceuticals can cause the problems you have mentioned.  That's why this website exists, because of the lack of medical support available.  I hope you are able to find that right person that can be of assistance to you.

 

I was in a very bad situation with the medications almost three years ago.  I am doing much better now. I hope you have the same success I did.

 

Rachel

[laydefish]

@Harriet8 I found you on the introductions & Updates Page.  You can get there from your profile settings too!

 

[Harriet8]

22 hours ago, laydefish said:

@Harriet8 I found you on the introductions & Updates Page.  You can get there from your profile settings too!

 

Thanks.  I'll take a look.

[Harriet8]

On 5/13/2019 at 2:17 PM, Harriet8 said:

severe tremors

Hi,

I'm wanting to attach video of my tremors/muscle spasms to see if anybody else here has, or has had, similar symptoms.  The videos are recorded on my phone (or actually my parents' phones) and sent to me via WhatsApp.  I'm not good at tech and am seeking help with how to upload them onto this site, ideally without revealing my identity/personal details.  They are private and vulnerable films of me which I am comfortable sharing on this website but not beyond, and don't know how safe it is to do so, given how easy it is these days to download/share/access accounts etc.  

 

@manymoretodays thought @JanCarol or @ChessieCat  or @Leo1983 might be able to help me with this.  Any guidance would be so welcome.  I am due to see another psychiatrist tomorrow..... I will post separately about my concerns about this and what any thoughts might be on here about my meds situation.

 

I have never been through anything as difficult as this in my life.  Right now I'm starting to believe I will never get my body and my health back.  I will try and stay connected here and keep hoping and try and stay strong.

 

Thank you all.

[Harriet8]

@RachelSusan Belated thank you for your message, for your validation, kindness and care.  It really means a lot.  Thank you.

 

I will read your link.  My fear is that I have had so many different meds, some at high doses, often many at a time, that my nervous system is damaged beyond repair.  It is too devastating to contemplate.  But it's really hard to trust that it can recover, and, in particular, how to help it.  Which drug to focus on? How to make what change first? And not having any clinician yet who believes me, makes it such a tough thing to get any guidance around.  I see another psychiatrist tomorrow morning and dread being told, yet again, that I'm deluded and that my symptoms have nothing to do with the vast quantities of medications I have taken over the past decades.

 

Grateful to have this website.  

[Harriet8]

On 5/14/2019 at 6:20 PM, manymoretodays said:

How did you taper off the citalopram 9 years ago and over how long of a time period?

I don't currently have access to my diaries (which I hope I still have at home) because I am currently staying with my parents.  But there are two things I think are relevant:

1) I think I would have reduced the Citalopram by 10 mg reductions, probably with one or two month intervals, ie. too quickly - and I have never successfully come off it completely, I don't think.  I wish I had my diaries to hand.  But I don't now if I came off it completely either.  If I did, it was reinstated within weeks, when I was admitted as an inpatient.

2) I only finished withdrawal from Quetiapine in the November of the year before (2009).  And that was a reduction, over a period of 2 years (?), but from 800mg.  That's a high dose.  I should never have been prescribed it as I have never been psychotic.  But I wonder if it was withdrawal from that, and not just the Citalopram, that was responsible.  I was put on Quetiapine again in 2013 (but only up to 300mg, I think).  My tremors are currently the worst they have ever been, limiting my functionality considerably, making me dependent and severely depressed/hopeless accordingly.

[manymoretodays]

Hi H8,

And wow!  You got your signature done.  Thank you.

I'm noticing that you are tapering the Zopliclone now too, from your signature.  You may want to just HOLD for a bit, at your present dose.  I'm a little concerned that you might be going a bit too fast.

I'm going to ask the other mods to also take a look now that you have your information a bit sorted for us too.

 

Could you also go to Drugs.com and do the interactions checker, then copy and paste here.

 

And another link for you to look at.  Tapering multiple psych drugs? Which drug to taper first?

 

You might consider, when you figure out how to do it.......posting your video somewhere in "Off Topic".  That's a forum that we have that can only be viewed by signed in members, so might offer you more privacy to post it there.  I just thought I would mention that. 

 

Best and L, P, H, and G,

mmt

 

 

[Harriet8]

A question: Whilst I have some education now about the nervous system (excellent course called SmartBody SmartMind run by Irene Lyon, Canada), I know so little about how psychiatric drugs affect it.  It is becoming clearer to me just how little psychiatry has ever understood or studied..... But that aside, I have a question in relation to my situation: the onset of my somatic symptoms was 9 years ago, when I had come down off of Quetiapine 800mg, L-Tryptophan 3g and Citalopram 60mg.  I have continued to struggle with the symptoms for 9 years, during which I have taken many other medications.  I am now on a different combination of drugs: Citalopram, Diazepam, Zopiclone and Pregabalin.  The Pregabalin was introduced last December to reduce the tremors.  I am unhappy about any suggestions to increase the Pregabalin as a remedy to my situation.  I see this as ignoring what is causing the tremors (because their onset predates Pregabalin by nearly a decade).  I also fear it is simply dampening the tremors down a bit but not stopping them from being instigated, as it were.  To me, it is merely a sticking plaster - and an unhelpful one, because I will eventually have to taper off that too. 

 

Can anyone comment on whether it matters to "go back to" the drug(s) which a person was on when the symptoms began?  That is tricky for me because I was on 60mg of Citalopram but that is now counter-indicated because of risks to the heart.  And, the drug which may well have been a big culprit is the Quetiapine and I really do not want to touch that again.  I am also very frightened of being "switched" to another SSRI because my body went through such terrifying states in coming down of Citalopram, I don't know how it would cope with effectively stopping it cold turkey and replacing it with something else.  

 

I will wait and see what the new psychiatrist I see tomorrow has to say.  I have sadly not yet been able to find someone who knows about withdrawal and tapering, so it is probably something of a pointless exercise in seeing this guy.  But I don't know what else to do right now, having no other medical supervision.

[Harriet8]

20 minutes ago, manymoretodays said:

Could you also go to Drugs.com and do the interactions checker, then copy and paste here.

mmt, I am so grateful to you.  Thank you for your response. 

 

Strangely, the drug checker doesn't have Zopiclone (or any of its other names) listed, so I am unable to include that in the checker.  Annoying.  Shall I post the whole result for the other 3?  There is nothing particularly alarming or informative in the result.

 

Re Zopiclone: I don't know how I could taper more slowly without finding a compounding pharmacy - and getting my GP or a psychiatrist to believe that this is necessary.  I will pause for now, as you suggest.  I'll wait and see if the psychiatrist tomorrow happens to be informed.  And if not, at least ask him how I could acquire Zopiclone in a taperable form.  My father already had to drive to France to get 3.75mg tablets, as Luxembourg only stocks them in 7.5mg tablets.

 

Thanks again for being there.  I'm feeling so low and lacking in hope just now.

[manymoretodays]

Try eszopiclone.  That's what came up when I plugged Zopiclone in.  It may be slightly different, a derivative, but that's okay for the basic interaction check.

[Harriet8]

Yes, that's all I could find.  It's a variant.  I'll put that in.  Thank you so much for all your help mmt.  Should I paste everything that comes up, even if nothing particularly notable?

[Harriet8]

1 hour ago, manymoretodays said:

Could you also go to Drugs.com and do the interactions checker, then copy and paste here.

Drug Interaction Report

Drug interactions for the following 4 drug(s):

My Interactions List: (Unsaved)Email Save Start Over
citalopram
diazepam
pregabalin
eszopiclone

Add / Remove drugs

• Consumer
• Professional

Major (0)

 

Moderate (6)

 

Minor (0)

 

Food (4)

 

Therapeutic Duplication (1)

Interactions between your drugs

Moderate

diazePAM  citalopram

Applies to: diazepam, citalopram

Using diazePAM together with citalopram may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

diazePAM  eszopiclone

Applies to: diazepam, eszopiclone

Using diazePAM together with eszopiclone may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

diazePAM  pregabalin

Applies to: diazepam, pregabalin

Using diazePAM together with pregabalin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

citalopram  eszopiclone

Applies to: citalopram, eszopiclone

Using citalopram together with eszopiclone may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

citalopram  pregabalin

Applies to: citalopram, pregabalin

Using citalopram together with pregabalin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

eszopiclone  pregabalin

Applies to: eszopiclone, pregabalin

Using eszopiclone together with pregabalin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

No other interactions were found between your selected drugs.
Note: this does not necessarily mean no interactions exist. Always consult with your doctor or pharmacist.

Other drug and disease interactions

• citalopram interacts with more than 600 other drugs and 10 diseases.
• diazepam interacts with more than 400 other drugs and more than 10 diseases.
• pregabalin interacts with more than 200 other drugs and 5 diseases.
• eszopiclone interacts with more than 300 other drugs and 3 diseases.

Drug and food interactions

Moderate

diazePAM  food

Applies to: diazepam

Grapefruit and grapefruit juice may interact with diazePAM and lead to potentially dangerous side effects. Discuss the use of grapefruit products with your doctor. Do not increase or decrease the amount of grapefruit products in your diet without first talking to your doctor. Do not drink alcohol while taking diazePAM. This medication can increase the effects of alcohol. You may feel more drowsy, dizzy, or tired if you take diazePAM with alcohol. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

citalopram  food

Applies to: citalopram

Alcohol can increase the nervous system side effects of citalopram such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with citalopram. Do not use more than the recommended dose of citalopram, and avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medication affects you. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

eszopiclone  food

Applies to: eszopiclone

Taking eszopiclone with a high-fat or heavy meal may delay the onset of sleep. For faster sleep onset, eszopiclone should not be administered with or immediately after a high-fat or heavy meal. This will make it easier for your body to absorb the medication. You should avoid the use of alcohol while being treated with eszopiclone. Alcohol can increase the nervous system side effects of eszopiclone such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

pregabalin  food

Applies to: pregabalin

Alcohol can increase the nervous system side effects of pregabalin such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with pregabalin. Do not use more than the recommended dose of pregabalin, and avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medication affects you. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Therapeutic duplication warnings

Therapeutic duplication is the use of more than one medicine from the same drug category or therapeutic class to treat the same condition. This can be intentional in cases where drugs with similar actions are used together for demonstrated therapeutic benefit. It can also be unintentional in cases where a patient has been treated by more than one doctor, or had prescriptions filled at more than one pharmacy, and can have potentially adverse consequences.

Duplication

Central Nervous System (CNS) Drugs

Therapeutic duplication

The recommended maximum number of medicines in the 'Central Nervous System (CNS) Drugs' category to be taken concurrently is usually three. Your list includes four medicines belonging to the 'Central Nervous System (CNS) Drugs' category:

• citalopram
• diazepam
• pregabalin
• eszopiclone

Note: The benefits of taking this combination of medicines may outweigh any risks associated with therapeutic duplication. This information does not take the place of talking to your doctor. Always check with your healthcare provider to determine if any adjustments to your medications are needed.

[manymoretodays]

4 hours ago, Harriet8 said:

 

Re Zopiclone: I don't know how I could taper more slowly without finding a compounding pharmacy - and getting my GP or a psychiatrist to believe that this is necessary.  I will pause for now, as you suggest.  I'll wait and see if the psychiatrist tomorrow happens to be informed.  And if not, at least ask him how I could acquire Zopiclone in a taperable form.  My father already had to drive to France to get 3.75mg tablets, as Luxembourg only stocks them in 7.5mg tablets.

 

Thanks again for being there.  I'm feeling so low and lacking in hope just now.

 

Yes.  A couple more links that you will find helpful now.

 

Tips for tapering off Z drugs for sleep

Just work on getting a form that's workable.  That link might help.

 

How to talk to your doctor about tapering and withdrawal and what to expect?

 

And good job.  With your copy and paste. 

4 hours ago, Harriet8 said:

I will wait and see what the new psychiatrist I see tomorrow has to say.  I have sadly not yet been able to find someone who knows about withdrawal and tapering, so it is probably something of a pointless exercise in seeing this guy.  But I don't know what else to do right now, having no other medical supervision.

Just breathe and take it one piece at time.  Fingers crossed for you and sending best thoughts and intentions for your appointment tomorrow H8.

You ARE doing a ton of work right now.  One piece, one thing, one day at a time always works well for me best.

 

L, P, H, and G,

mmt

[Harriet8]

@manymoretodays, I feel so scared.  I just read this from the link you forwarded about how to talk to doctors:

 

"Withdrawal symptoms of any type show your nervous system is in distress. If they go on for any length of time, they cause neurological dysregulation -- neurological damage that can last many months. There's no way to fix this, your nervous system will need to repair itself over time."

 

I believe this is my situation.  So how can the psychiatrist help me?  

 

It is late here now and I will be up early to see him.  I will check in again tomorrow.  Thank you for being there.  I'm struggling so much just now, afraid that there is no hope.

[manymoretodays]

There is hope H8.  You will repair.  It just takes time.

Including this link as well:  To the first post in Withdrawal dialogues and encouragement

There are some short video's ^  I especially recommend the Doctor's visit ones down at the bottom.  All of them are good though.  Short cartoon like videos.  With a positive slant.

 

The psychiatrist can keep your prescriptions renewed.  And who knows H8, perhaps he'll become an ally and support for your healing?

If not, any doctor can write your scripts.

 

(((((H8)))))  Update us and let us know how it goes.

 

 

Edited June 4, 2019 by manymoretodays

[RachelSusan]

Hi H8,

wishing you luck with you psychiatrist visit.  Who knows what will happen. Perhaps the doctor will understand, if not you can thank them and move on. 

 

I do believe you can and will recover.  

 

Warm wishes. 

[Harriet8]

18 hours ago, manymoretodays said:

your appointment tomorrow

Dear mmt,

 

Thank you for your ongoing validation and support.  It means so much.

 

The appointment was, thankfully, respectful.  But, the psychiatrist had never seen a condition like mine before and basically didn't know what to do.  His suggestions were to see a neurologist (I have already seen 4), and to try Tranylcypromine (MAOI).  He said he really did not think it could possibly be due to the medications I have taken in the past or am taking now.  He did add that he couldn't rule it out entirely, but basically had never heard of medications leading to my kind of symptoms.  When I showed him a recent video, he said it reminded him of footage of war veterans with PTSD.

 

I asked him how he would suggest I "transfer" to MAOI.  He said that I would need to come off the Citalopram and then start the MAOI.  I told him that I can't get off the Citalopram, that I had to call the paramedics when I reduced as far as 20mg because I genuinely thought I was going to die.  I don't think he believed me that I would need to taper really slowly for it to be possible for me to come off Citalopram.  So, on that front, given that I am seeking some help to stabilise asap, that seems to be a route I cannot take.  So, whilst I have an appointment to see this man again, I don't think there is any point.  So I am, again, without a clinician involved.

 

I feel increasingly sure that my condition is due to medications (at least significantly - I do identify as CPTSD and have had ECT, which I think has had an effect on my nervous system too).  However, it is possible that there is some other explanation for my condition, and that I have got this wrong.  It would be so useful to be able to post video of my walking here, to see if anyone else identifies and/or has seen this before.  I have asked a friend to help re video.  Hoping I might hear back from someone on here too re how to upload it.

 

Things feel pretty dire now.  I am not sure how to proceed.  I will wait to hear if other moderators have a view on the Zopiclone.  Apart from that, what feels most challenging is that I feel like I need to be adding something back in in order to be able to function at least a little more.  If it is simply too late for that - HOW DO I FIND THIS OUT? - then am I looking at just riding it out?  It has already been 9 years.  And does that mean starting to taper one drug slowly, even though my life as it currently is, means I am unable to live without care.  I'm 43 and otherwise healthy.  I am determined to try and get back to functionality.  I was a yogi, I've trekked up the Himalayas, I danced, I played music, I loved to go out with people, very confident, happy driver, I worked as a therapist....... I can barely stand up to brush my teeth now.

 

Finally, would it be useful to list the supplements I was taking?  It hadn't occurred to me that they might be an important consideration.  I was prescribed them back in 2015.  Having run out of many of them (being away from home), I have simply stopped some of them.  I have re-ordered only the magnesium and the fish oil and the multivitamin and vitD (because I get so little sunlight).  But perhaps I should also list what I was taking?  I didn't realise that my nervous system may indeed be very sensitive to the supplements too - and, indeed, that I should be careful in selecting a functional medicine pracititioner accordingly.  I have been advised by so many people to get my gut tested and really attend to that.  It is only on this website that I have found caution about this path too.

 

Any advice on how to proceed, next steps, how to connect with most appropriate people would be so welcome.

 

With thanks and warmest wishes,

 

Harriet8

[manymoretodays]

On 5/13/2019 at 7:17 AM, Harriet8 said:

 

I will list the medications I am currently taking:

Citalopram 40mg

Pregabalin 50mg @ 09.00, 25 mg @ 13.00, 25mg @ 22.00

Diazepam 2mg @ 09.00, 25mg @ 13.00, 25mg @ 19.00, 25 mg @ 22.00

Zopiclone 3.75mg: began tapering under advice of GP 10 days ago, reducing by 1/4 = cutting the pill in half and half again and taking 3/4.  He suggested I taper by 1/4 every 2-3 weeks.

 

I feel trapped in a Catch22: I am unable to function in the world as I am.  My symptoms are prohibitive of most activities and restrict where I can be, even within my parents' home, as my sensitivity to sound is so great and I am unable to be standing for very long due to the tremors.  I am due to see the GP again tomorrow to ask his advice.  I do not have a psychiatrist here.  I am not keen to see yet another psychiatrist unless this person understands the fight/flight/freeze response, believes in withdrawal syndromes and tapering.  My despair lies in the fact that I am sadly not in a position to be tapering really until I have adequate functionality restored.  But I don't know how to restore that, how to address the tremoring and sensitivity to sound.  The advice I have had from psychiatrists is to increase the dose of Pregabalin to quell the tremors.  I am currently on a sub-therapeutic dose. I am reluctant to do this as this will be yet another drug to come off (which holds risks of seizures through withdrawal).

 

Does anybody here have anything they could suggest to help?  I am only just beginning to try to understand what the effects might be, on my nervous system, of extensive use of the drugs I have been on in the past, and am currently on.  In particular, Quetiapine (I was on 800mg in 2005 and reduced over a couple of years - I never had any psychosis; and again 2013 - 2016 at 300mg), Diazepam (30mg in 2013, now 8mg) and Citalopram (60 for many years, now 40mg).  I don't know if everything my body is manifesting is an expression of a depletion of receptors throughout my body?  I am doing an online course on the nervous system and understand the intricacy of it, and how every cell in our bodies is affected by nervous system dysregulation. 
 

 

Hi H8,

Yes, go ahead and list supplements that you currently take. 

I quoted a bit of your original post, as you've got current meds listed there already, with some of the times and doses.

You can include them in this format:  daily symptom and drug dosing notes

Then post a day or two right here on your introduction.  Keep it simple.  Note the date.  Then the time of day on the left.  On the right list your drugs by name and dosage.  Also on the right side include your supplements,  something about your sleep, as well as symptoms throughout the day.  A rating scale is good for symptoms(1-10 usually works well).

 

38 minutes ago, Harriet8 said:

I feel increasingly sure that my condition is due to medications (at least significantly - I do identify as CPTSD and have had ECT, which I think has had an effect on my nervous system too).  However, it is possible that there is some other explanation for my condition, and that I have got this wrong.  It would be so useful to be able to post video of my walking here, to see if anyone else identifies and/or has seen this before.  I have asked a friend to help re video.  Hoping I might hear back from someone on here too re how to upload it.

 

I agree H8.  That much of your condition has come about from the drugs, adverse effects, and then some of the WD as well.  Your poor nervous system has taken a battering from all of this.

 

And I am glad it was a respectful visit with the psychiatrist today.

 

Get some rest now.  I think it is night there now.  Sending healing thoughts.

 

Love, peace, healing, and growth,

mmt

Edited June 4, 2019 by manymoretodays

[Harriet8]

mmt,

I hope it's ok to share.  I'm feeling despair.  I'm starting to believe that nobody can help me and that I will never recover.  I think it may be triggered by having to arrange yet another psychiatrist to try and see, and doing this repeatedly for 9 years.  I'm not sure I've got it in me to hear, yet again, that nothing can be done to help me.  I was going through other threads on here earlier, thinking I might see if anyone on here might be able to sponsor me.  I identify as CODA and ACA.  Most people here who share about 12 steps - yourself included, I believe - identify as AA.  Harder to find sponsors for CODA or ACA anyway.  But I realise that, my faith (which was always fragile and only recently developing) is fading.  I'm starting to think that maybe life and nature are just tough, ruthless sometimes; that there is luck and there is misfortune.  I've been wanting to work a programme despite how unwell I've been, because I've felt the need to keep a spiritual connection.  I am unable to attend any face-to-face meetings, being housebound.  I was on InTheRooms as much as possible.  I haven't found a sponsor there.  

 

I'm really sliding.  I've got a strong instinct this doc in the UK will also not know how to help.  And it's a big deal for me to travel there.  My nervous system is so fragile.  I have to drive (be driven - I can no longer drive myself), break the journey because I can't tolerate the sound or motion for 8 hours.  I wanted to send this psychiatrist my drug signature and video footage to find out if she thinks she could help, via a Skype session, to spare myself the pain..... if, within, 5 minutes of a face-to-face appointment she's going to turn round and say that she's sorry but she really can't help.  I think it's sort of re-traumatising for me now, to repeatedly explain everything, and be told that nothing can be done.

 

I'm letting myself write when I wouldn't normally be this loose.  I hope it's OK.  I suppose, I'm reaching out.  I can't afford to stop believing.  And I can't really afford to abandon any faith at all that there is something out there bigger than me that is worth praying to....... But I feel like I'm going under.  So that's why I'm letting myself type this to you.  I need to get myself some support.  I don't know where.  I'm straddling two countries, literally waiting to find where I might get some medical supervision.  Only then can I "choose" where to base myself and try and set up some kind of support system, and literally rebuild my life.  It's really tough.  Forgive me.  I hope OK to send this.  

 

H8

[Altostrata]

Hello, Harriet. What do you think of your drug interactions report? Do you see any of your symptoms in those interactions?

 

The idea that an MAOI would somehow fix your situation is loopy. I guess the psychiatrist is thinking that none of the other drugs did the trick, so he thought he might try a different class of drugs.

 

It seems to me that you might have tremor from your quetiapine history, or it could be aggravated by your current drug combination. I believe your history shows you have tremendous difficulty coming of citalopram, it was your initial taper that started your mysterious symptoms. They were withdrawal symptoms. The milder autonomic instability they signaled has been exacerbated by the prescription cascade that followed.

 

So it seems fairly clear to me that leaving citalopram be would be a good idea, but it appears you're carrying an excessive drug load overall, mostly GABAergics, that probably impede your mobility, at the very least. Why were you taking zolpidem or zopiclone as well? (Please look up side effects for each of your drugs on drugs.com.)

 

What happened to the sound sensitivity, do you still have that?

 

If you thought the psychiatrist was a nice person with whom you'd otherwise want to work if he would support your plan, you might talk to him about deprescribing these drugs. That means taking away those that aren't necessary.

 

We need to see your drug schedule and daily symptoms in this format:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

[manymoretodays]

Hi H8,

 

On 6/5/2019 at 12:43 PM, Harriet8 said:

But I feel like I'm going under.  So that's why I'm letting myself type this to you.  I need to get myself some support.  I don't know where.  I'm straddling two countries, literally waiting to find where I might get some medical supervision.  Only then can I "choose" where to base myself and try and set up some kind of support system, and literally rebuild my life.  It's really tough.  Forgive me.  I hope OK to send this.  

Yes, it is completely okay to share how you did in your last post.  This is your introduction/journal spot.  I've been swamped the past several days with "ground" stuff.  Some good, some more trying, and sorry for the time lag in getting back to you.

 

On 6/5/2019 at 12:43 PM, Harriet8 said:

 

I'm not sure I've got it in me to hear, yet again, that nothing can be done to help me.  I was going through other threads on here earlier, thinking I might see if anyone on here might be able to sponsor me.  I identify as CODA and ACA.  Most people here who share about 12 steps - yourself included, I believe - identify as AA.  Harder to find sponsors for CODA or ACA anyway.  But I realise that, my faith (which was always fragile and only recently developing) is fading.  I'm starting to think that maybe life and nature are just tough, ruthless sometimes; that there is luck and there is misfortune.  I've been wanting to work a programme despite how unwell I've been, because I've felt the need to keep a spiritual connection.  I am unable to attend any face-to-face meetings, being housebound.  I was on InTheRooms as much as possible.  I haven't found a sponsor there.  

 

I am just getting going soon, in some AlAnon.  You might consider either a PM to elbee, member and moderator, or posting on introduction/journal elbee: 25 years of meds

 

Were you able to stop drinking on your own?  I noticed that you had mentioned alcohol usage in your first post.

Yes, working a program may be really helpful for you now.

 

Up to you, I think, to ultimately decide if you want to pursue another appointment that might just lead to disappointment.  You never know though, unless you keep trying sometimes, to find allies and support........so I don't know what to say.  I think you'll reach the right decision.

 

Thanks Alto too, for stopping in.  And yes, do look at the side effect profiles of all your medications.

On 6/7/2019 at 9:01 PM, Altostrata said:

Please look up side effects for each of your drugs on drugs.com.

 

When you go to drugs.com, right up at the top of the screen you can enter in medications by name, and then it will bring you to more info.

You don't necessarily have to post that here again.  Just let us know concerns after and your main doctor too, once you decide on one.  It IS a good idea to have someone following you medically.  Maybe you can find a supportive GP?  If the others, just are not helpful right now?

 

On 6/7/2019 at 9:01 PM, Altostrata said:

What do you think of your drug interactions report? Do you see any of your symptoms in those interactions?

 

 

Sweetie, you are doing really good, for someone just here, and taking in all this information, and then even doing your "assignments" for us too!  That gives me tons of hope for your ultimate healing.  It does.  So I hope that bounces back so you feel it too.

Next up, daily logs, the sample and link to how to's on that are above.

 

Love, peace, healing, and growth,

mmt

Edited June 9, 2019 by manymoretodays
added quote

[Harriet8]

On 6/8/2019 at 1:01 PM, Altostrata said:

 

Hello, Harriet. What do you think of your drug interactions report? Do you see any of your symptoms in those interactions?

 

 

Dear Altostrata,

Firstly, thank you so much for your message.

Nothing jumps out as notable in drug interactions report, only that I do wake a little more drowsy since I began Pregabalin in December.  And I note the warning that I shouldn't be taking more than 3 drugs which act on the CNS.  Overall, no I don't see my major symptoms in those interactions.

 

On 6/8/2019 at 1:01 PM, Altostrata said:

The idea that an MAOI would somehow fix your situation is loopy. I guess the psychiatrist is thinking that none of the other drugs did the trick, so he thought he might try a different class of drugs.

 

I totally agree.  When I showed him video footage of me walking, he said it reminded him of veterans with PTSD.  It is difficult to discern how much is trauma and how much meds.  I believe the 2 are interlinked, "overcoupled", both contributing to dysregulation.  

 

On 6/8/2019 at 1:01 PM, Altostrata said:

It seems to me that you might have tremor from your quetiapine history, or it could be aggravated by your current drug combination. I believe your history shows you have tremendous difficulty coming of citalopram, it was your initial taper that started your mysterious symptoms. They were withdrawal symptoms. The milder autonomic instability they signaled has been exacerbated by the prescription cascade that followed.

 

So it seems fairly clear to me that leaving citalopram be would be a good idea, but it appears you're carrying an excessive drug load overall, mostly GABAergics, that probably impede your mobility, at the very least. Why were you taking zolpidem or zopiclone as well? (Please look up side effects for each of your drugs on drugs.com.)

 

I had a month of total insomnia (on the back of a very long period of very little sleep) last summer.  I am currently using sound therapy to help me get to sleep.  It does seem to help.  I am a bit concerned that it may be overstimulating, though, and thus a stressor for the NS.  I might post about this elsewhere - see if anybody else uses sound therapy.  I am down to half of the Zopiclone now but mmt warned me to pause my reduction. I have since been able to arrange with a pharmacy here to make up the next 2 10% reductions for me, so I plan to go ahead with the next 10% reduction on Tuesday.  I have since read on here that 25% is OK for the Z drugs, but since I have ordered the 10%, I'll go with that.

 

On 6/8/2019 at 1:01 PM, Altostrata said:

What happened to the sound sensitivity, do you still have that?

 

Yes, and it's in the top 3 worst symptoms. So disabling and isolating.  It is still very bad and is connected to the tremors e.g. trying short walk in a quiet place vs. along a pavement with passing traffic (end up clinging to a lamppost)

 

On 6/8/2019 at 1:01 PM, Altostrata said:

If you thought the psychiatrist was a nice person with whom you'd otherwise want to work if he would support your plan, you might talk to him about deprescribing these drugs. That means taking away those that aren't necessary.

 

Question: I am so confused about how to proceed, given that I am not stable at all. 3 issues here:

1) My symptoms are so bad that I am unable to live without carers eg stand up to be able to prepare a meal (currently my parents who are in their 70s).  Given that, as you acknowledge, the onset of my symptoms was linked to the reduction of Quetiapine, followed swiftly by beginning Citalopram reduction (from 60mg), I don't know whether I need to add something back in to try and stabilise/restore my functionality, in which case, what?

 

2) Or, is it the case that I now fall into the category of those people who sadly have been in a withdrawal state for a long time?  In which case, is the only option for me to ride it out and hope that my NS will, over time, find its regulation again? 

 

3) I fear that the Diazepam and Pregabalin may still be necessary.  The Diazepam was introduced because the convulsions were too bad for me to be able to get food down me.  The Pregabalin reduces the tremors somewhat (although I am on a sub-therapeutic dose - I didn't want to take it at all because I see at as a sticking plaster, and, therefore, am reluctant to increase the dose, knowing that I'll have to come down off of that too).  But, I am not happy staying on either drug long-term. I am also severely depressed and live with varying levels of anxiety constantly.  I would really appreciate your thoughts here because I feel trapped and deeply concerned about my future and the possibilities for recovery.

 

On 6/8/2019 at 1:01 PM, Altostrata said:

We need to see your drug schedule and daily symptoms

 

I will start a daily record.  I wonder somewhat about its usefulness if my withdrawal state is so longstanding that it "dates back" to a drugs combination I am no longer taking.  I will do it, though.  I can only work with my NS as it is today.  Anything to help.

 

Thank you for everything you do to help so many people.

 

Edited June 9, 2019 by ChessieCat
extracted responses from quote and requoted

[Altostrata]

I suspect your CNS is overburdened with drugs, but I can't tell what's causing what. You seem to feel diazepam pregabalin, and zopiclone are beneficial for the tremors, although the drug interaction report indicates they could interfere with motor coordination.

 

That would leave decreasing citalopram, but I don't know if it would make you better or worse. FYI, Tips for tapering off Celexa (citalopram)

 

It seems to me you need the attention of a neurologist, in case the tremors are related to the quetiapine, etc. in the general area of drug-induced Parkinsonism, which is well-documented. This may resolve when the drugs are removed.

 

Or, you may have what's called a functional neurological disorder. We don't counsel about that here, we don't have the expertise.

 

I'm sorry, those are my best guesses. If I were you, I'd hunt for a neurologist you can work with. That person can also make decisions about your drug cocktail.

 

 

On 6/3/2019 at 8:40 AM, Harriet8 said:

 

Moderate

diazePAM  citalopram

Applies to: diazepam, citalopram

Using diazePAM together with citalopram may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

diazePAM  eszopiclone

Applies to: diazepam, eszopiclone

Using diazePAM together with eszopiclone may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

diazePAM  pregabalin

Applies to: diazepam, pregabalin

Using diazePAM together with pregabalin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

citalopram  eszopiclone

Applies to: citalopram, eszopiclone

Using citalopram together with eszopiclone may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

citalopram  pregabalin

Applies to: citalopram, pregabalin

Using citalopram together with pregabalin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

eszopiclone  pregabalin

Applies to: eszopiclone, pregabalin

Using eszopiclone together with pregabalin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

No other interactions were found between your selected drugs.
Note: this does not necessarily mean no interactions exist. Always consult with your doctor or pharmacist.

 

Other drug and disease interactions

• citalopram interacts with more than 600 other drugs and 10 diseases.
• diazepam interacts with more than 400 other drugs and more than 10 diseases.
• pregabalin interacts with more than 200 other drugs and 5 diseases.
• eszopiclone interacts with more than 300 other drugs and 3 diseases.

Drug and food interactions

Moderate

diazePAM  food

Applies to: diazepam

Grapefruit and grapefruit juice may interact with diazePAM and lead to potentially dangerous side effects. Discuss the use of grapefruit products with your doctor. Do not increase or decrease the amount of grapefruit products in your diet without first talking to your doctor. Do not drink alcohol while taking diazePAM. This medication can increase the effects of alcohol. You may feel more drowsy, dizzy, or tired if you take diazePAM with alcohol. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

citalopram  food

Applies to: citalopram

Alcohol can increase the nervous system side effects of citalopram such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with citalopram. Do not use more than the recommended dose of citalopram, and avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medication affects you. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

eszopiclone  food

Applies to: eszopiclone

Taking eszopiclone with a high-fat or heavy meal may delay the onset of sleep. For faster sleep onset, eszopiclone should not be administered with or immediately after a high-fat or heavy meal. This will make it easier for your body to absorb the medication. You should avoid the use of alcohol while being treated with eszopiclone. Alcohol can increase the nervous system side effects of eszopiclone such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

pregabalin  food

Applies to: pregabalin

Alcohol can increase the nervous system side effects of pregabalin such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with pregabalin. Do not use more than the recommended dose of pregabalin, and avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medication affects you. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Therapeutic duplication warnings

Therapeutic duplication is the use of more than one medicine from the same drug category or therapeutic class to treat the same condition. This can be intentional in cases where drugs with similar actions are used together for demonstrated therapeutic benefit. It can also be unintentional in cases where a patient has been treated by more than one doctor, or had prescriptions filled at more than one pharmacy, and can have potentially adverse consequences.

Duplication

Central Nervous System (CNS) Drugs

Therapeutic duplication

The recommended maximum number of medicines in the 'Central Nervous System (CNS) Drugs' category to be taken concurrently is usually three. Your list includes four medicines belonging to the 'Central Nervous System (CNS) Drugs' category:

• citalopram
• diazepam
• pregabalin
• eszopiclone

Note: The benefits of taking this combination of medicines may outweigh any risks associated with therapeutic duplication. This information does not take the place of talking to your doctor. Always check with your healthcare provider to determine if any adjustments to your medications are needed.

 

[Altostrata]

Harriet, you might find more appropriate support in these Facebook groups

 

https://www.facebook.com/groups/1196474663803635/

 

https://www.facebook.com/groups/functionalneurologicaldisorder/

 

Or through this Web site for Functional Neurological Disorder They may be able to refer you to a neurologist near you.

[Harriet8]

9 hours ago, Altostrata said:

It seems to me you need the attention of a neurologist, in case the tremors are related to the quetiapine, etc. in the general area of drug-induced Parkinsonism, which is well-documented. This may resolve when the drugs are removed.

 

Or, you may have what's called a functional neurological disorder. We don't counsel about that here, we don't have the expertise.

Dear Altostrata,

I have seen several neurologists.  I have received one diagnosis of functional neurological disorder.  To me, though, it doesn't seem to have any explanatory value at all.  Are you able to say how to distinguish between a withdrawal problem - esp if tardive (I no longer take quetiapine) and FND?  I think the neurologists have ruled out anything like Parkinsons.  My alchohol consumption has never been excessive.

Thank you so much for your help.  This community has felt so valuable to me in recent weeks.  I feel quite devastated this morning to think that this may also no longer be a place for me, if my condition is not really quite what others are suffering from here - even, though, to me it seems it must be linked to the meds.  I have been otherwise healthy.

Harriet8

[Altostrata]

Functional neurological disorder is a very general diagnosis, meaning "it's in the nervous system, but I don't know what it is." Treatment is to reduce symptoms. Diagnosis is only a starting point. What did that neurologist say about treatment? Did you discuss the possibility of drug-induced symptoms?

 

Quite often, the patient needs to lead the doctor in these things.

 

If you think 3 of the 4 drugs you're taking are helping, as a peer support counselor, I don't feel I can suggest changing any of those. While your original problem probably was citalopram withdrawal, your current problem is outside what we address here.

 

It's possible a very gradual reduction of citalopram might change your internal ecology and symptom pattern, but I don't know. It could upset the apple cart even more. How are you doing with the zopiclone reduction?

 

So in terms of practical advice, not sure what we can do for you.

 

 

[Harriet8]

On 6/10/2019 at 7:20 PM, Altostrata said:

Functional neurological disorder is a very general diagnosis, meaning "it's in the nervous system, but I don't know what it is." Treatment is to reduce symptoms. Diagnosis is only a starting point. What did that neurologist say about treatment? Did you discuss the possibility of drug-induced symptoms?

Exactly: "FND" has so little explanatory value.  The neuropsychiatrist referred me to the treatment centre in the UK (the Lishman Unit of the Maudsley Hospital, London).  They combine meds, physio and OT.  I was assessed by a psychologist and occupational therapist there in April.  It is an 18 - 24 month waiting list, but they seemed to have no patience with my belief that this was caused by psychiatric drugs and that I was, accordingly, not wanting to take even more meds as part of their treatment plan.  They implied that might be a deal breaker (ie I would not be accepted if I refused to take the medications they believe I need).  Anyway, that's 2 years off and I need help/support/clarity/hope......much sooner than that.

Quite often, the patient needs to lead the doctor in these things.

Yes.  My experience is that doctors a) don't believe me, and b) don't like to be led!  But I will continue to try and find someone who is understanding...

If you think 3 of the 4 drugs you're taking are helping, as a peer support counselor, I don't feel I can suggest changing any of those. While your original problem probably was citalopram withdrawal, your current problem is outside what we address here.

I have most definitely experienced severe problems with Citalopram withdrawal, and am wanting not to be taking it at all because I'm severely depressed and it does nothing for me, but obviously I can't get off it quickly.  My intention is to taper one drug at a time and I have started with Zopiclone.  I  need some medical supervision but currently have nobody monitoring my drugs.  The psychiatrist I may be able to be under in the UK implied she would want to keep everything as it was until she had a better understanding of what might be going on, and because she was acknowledging the extreme sensitivity and dysregulation of my nervous system.  I don't believe the Diazepam is really helping anymore.  I wonder if I would be able to eat if I came off of that next.  I think the Pregabalin helps slightly but am very uncomfortable about staying on that too. 

 

I am now more of the opinion that my main symptoms have been caused by Quetiapine.  The initial onset began a few months after I finished my reduction of Quetiapine (down from 800mg - I'm not sure quite the pace as my diaries are not accessible to me just now, but definitely FAR TOO QUICKLY).  And my symptoms worsened again, as I reduced it the second time (again FAR TOO QUICKLY).  I have watched Dr Breggin's videos of tardive dyskinesia and identify with 4 of the people in his videos.  I am feeling severe hopelessness and the deepest concern for my future now.  I don't want to give up without more clarity, the opportunity to find others to share with, and some understanding of how I might a) make life liveable now, and b) take some action that could heal......Is it possible I could recover?  I just don't know.

It's possible a very gradual reduction of citalopram might change your internal ecology and symptom pattern, but I don't know. It could upset the apple cart even more. How are you doing with the zopiclone reduction?

I definitely think Citalopram is doing nothing useful, so I would like to come off it.  The problem is when (and obviously, it would take a long time: I am on 40mg).  The Zopiclone reduction is "ok", I think.  I am a lot bleaker but I think that is more a result of repeated appointments with people who say they can't help me and the difficulty of living with my parents and increasing fear of how/if I could live independently again, lose my home?....the extreme isolation, unable to go out, terrible sensitivity to sound, inability to stand for very long.......so no longer able to engage in life and the world in any normal way at all.  I haven't been able to get off to sleep, though, for hours and hours now, on the reduced dose of Zopiclone.  So that could be a real problem.  I don't know how I will get around that.  It is so difficult for me to get my system to calm down into parasympathetic rest.  It is ok once it's asleep, but awakes in a horrible manner and is then "on" until chemically switched off.  Hence why I started the sleeping pills.  I'm currently using sound therapy to try and help with that - although I am concerned it may be too stimulating for my nervous system.  But it does make me feel a bit tired and is meant to help with sleep, and tinnitus and nervous system regulation generally.  I would be curious to know if anyone else on here has tried sound therapy...

So in terms of practical advice, not sure what we can do for you.

I understand.  I hope to stick around on the website to see if I can glean anymore understanding eg of tardive dyskinesia and dystonia, what to do with symptoms if you are no longer taking the drug which caused them....and generally to help me keep going.  I'm in shock taking on board the possibility that my life is changed irreversibly, especially as it currently does not really feel worth living and is a terrible strain on my parents who are in their 70s.

 

Dear Altostrata,

 

Belated thank you for your help.  I have been feeling extremely bleak and hopeless and fearful for my future.  Hence dropping off the forum, just lying in the dark..... There is still a part of me that wants to keep going, doesn't want to give up.  But I have never faced anything as awful as this in my life.  I hope with all of my being that there is a way ahead.....

 

Thank you again for everything you do on behalf of us all.

 

Harriet8