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

June 20, 2019

26 minutes ago, Harriet8 said:

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.

What is your daily drug schedule? Please be as concise as possible. The long explanations are difficult to follow.

June 22, 2019

On 6/20/2019 at 8:27 PM, Altostrata said:

What is your daily drug schedule? Please be as concise as possible. The long explanations are difficult to follow.

Hi Altostrata,

I did a drug schedule for yesterday. I will explain my reservation afterwards:

9.15* Took 50mg Pregabalin, 40mg Citalopram, 2 mg Diazepam

Drowsy rest for a bit but no further sleep. Stayed in bed with despair, hopelessness.

12.00 Shower

12.20 Some facial twitching in left cheek

13.00 Took 25mg Pregabalin, 2mg Diazepam

13.15 Slightly drowsy, zoned out in despair

13.45 Ate lunch and took supplements: Multivitamin and VitD spray

Back to bed in despair and severe distress

17.00 Watched TV: slightly calmer; distress again when programme finished

19.06 Took 2mg Diazepam; back in bed with despair

20.00 Ate dinner and took supplements: Magnesium and Fish oil

Stayed downstairs but extreme distress; tried some TV; then terrible outburst at my mum and behaviour quite out of character (aggressive)

23.00* Took 1.7mg Zopiclone, 2mg Diazepam, 25mg Pregabalin

*It's very difficult for me to monitor my sleep because I am SO sensitive to light or sound that even checking the clock could mean I don't get any sleep. I think I got off to sleep after a few hours and woke a few times. I am drowsy in the mornings and desperate not to wake up to another day, so I am not sure when I woke.

Reservation/Query: Altostrata, I think I am dealing with a tardive condition. I haven't listed above the details of my symptoms eg muscle spasms, struggling to breath, tongue curling, difficulty walking....etc. partly because they can happen at any time and have become part of daily life, but mostly because they seem to be a function of what I try to DO, rather than being related to the drugs I am taking NOW. So, standing up to shower will trigger my symptoms. Eating will trigger them. The sound of the taps will trigger them. Trying to go for a walk will trigger them big time.... I think what I mean is that, apart from some mild drowsiness, I don't really notice the effects of the meds across the day. I notice the effects of stimulation from the environment and from anything I try to do (which is very little now - I'm housebound), my posture, whether my body is fully supported or not...

> Is there a place on this website for TARDIVE conditions? I think that's what I am dealing with. I am in a terrible state over this. I watched Dr Breggin's video on the effects of antipsychotics: tardive dyskinesia and dystonia, and I identified with 4 of the people in that video. I imagine there are other sufferers here who are living out tardive effects? If not, can you point me anywhere? I am in shock and despair right now because my life is so limited by my condition that I can't see a way ahead. If I can survive this and there is some hope of recovery, I intend to taper off my current drugs, very slowly, so I will definitely use this site for that process. But right now, my biggest concern is what happened in 2010, the initial onset, and the subsequent worsening - presumably caused by the reinstatement of, in particular, Quetiapine and Citalopram, and withdrawal again

> On SOUND SENSITIVITY: this is possibly the most restrictive of my symptoms (alongside the tremors): I had thorough auditory checks (all fine) and am convinced this is due to the drugs; I have begun looking into the effects of dopamine and serotonin on auditory processing. I would need to do several PhDs to begin to understand what is involved - and, I had to remind myself that probably nobody knows the long term effects of the drugs because they haven't done the research. But I wonder if there is any kind of evidence base? Scans of people's brains after long- term use? Any documentation, measures at all?

I apologise for the lengthy reply. I appreciate that you are busy and that there are limits to what you can suggest. I thought I would just share where I'm at in the hope of connection at least, and any possible leads I might follow if, as I fear, I am looking at damage to both dopamine and serotonin "systems" in my nervous system, possibly irreversibly. I don't know where to turn. As Dr Breggin states, many doctors and neurologists don't recognise tardive conditions. And, it seems there is nothing they can do about it anyway. This is the reason for my despair. I don't want to give up. I don't know whether it is possible for me to educate myself on what the effects of long term use of these drugs might have been on my system, such that I might know what needs repairing and how. There is so much evidence of neuroplasticity generally. But what do antipsychotics actually do to the brain and CNS long-term. Is there scope for neuroplasticity, for healing? And SSRIs?

Thank you again for everything you do.

Harriet8

June 22, 2019

Hi Harriet,

I looked up hyperacusis on the web MD site, and I noticed that regular use of Valium is a cause - here’s the full list:

People aren't typically born with hyperacusis -- it's usually caused by certain diseases or health issues. The most common ones are:

An injury to your head (for instance, one cause by an airbag)
Damage to one or both ears because of medications or toxins
A viral infection that affects your inner ear or facial nerve (Bell's palsy)
Temporomandibular joint (TMJ) disorder
Lyme disease
Tay-Sachs disease
Migraine headaches
Using valium regularly
Certain kinds of epilepsy
Chronic fatigue syndrome
Meniere's disease
Post-traumatic stress disorder (PTSD)
Depression
Autism

Here’s a link

https://www.webmd.com/brain/sound-sensitivity-hyperacusis#1

June 22, 2019

Harriet, as you surmised, we can't offer you any solutions for tardive dyskinesia or other movement disorder. You'd have to see a neurologist for that.

From what we've seen of withdrawal-induced movement disorders and drug-induced pseudo-Parkinson's, they tend to go away very slowly over time.

You should be aware that "depression" is a common side effect of benzo use. You are taking diazepam 4 times a day. Most people take it only once or at most twice a day, one dose having a very long half-life, up to 100 hours.

June 24, 2019

On 6/22/2019 at 10:25 PM, RichT said:

Hi Harriet,

I looked up hyperacusis on the web MD site, and I noticed that regular use of Valium is a cause - here’s the full list:

People aren't typically born with hyperacusis -- it's usually caused by certain diseases or health issues. The most common ones are:

An injury to your head (for instance, one cause by an airbag)

Damage to one or both ears because of medications or toxins

A viral infection that affects your inner ear or facial nerve (Bell's palsy)

Temporomandibular joint (TMJ) disorder

Lyme disease

Tay-Sachs disease

Migraine headaches

Using valium regularly

Certain kinds of epilepsy

Chronic fatigue syndrome

Meniere's disease

Post-traumatic stress disorder (PTSD)

Depression

Autism

Here’s a link

https://www.webmd.com/brain/sound-sensitivity-hyperacusis#1

Dear RichT,

Thank you kindly for your message. Yes, I was not born with the condition. I had no problems with sound sensitivity until 2010. Prior to that I had been on many drugs, including a high dose of Quetiapine (800mg), high dose of Citalopram (60mg) and had 8 sessions of ECT. I fear my dopamine and serotonin "systems" have been damaged, and affected my auditory processing accordingly. I have suffered with severe depression, and have a diagnosis of PTSD. So there are many possibilities. It is exceedingly disabling and, apart from sound therapy (which may be too stimulating for my system just now, I don't know), I don't know what I can do to help it. It is so bad, I may have to move house to somewhere quiet and find creative ways to do the normal stuff of daily life - for which I already need care. Do you have any experience of this yourself?

I appreciate your taking the trouble to message, thank you. I notice you are a mentor and in London. I live in Brighton (but am currently abroad with family for care). Do you mentor people through withdrawal or in other ways?

Warm wishes,

Harriet8

June 24, 2019

On 6/23/2019 at 12:46 AM, Altostrata said:

From what we've seen of withdrawal-induced movement disorders and drug-induced pseudo-Parkinson's, they tend to go away very slowly over time.

Are there people on this site that you have in mind who I could link up to if they have experienced similar? Any connections would be invaluable.

June 24, 2019

On 6/23/2019 at 12:46 AM, Altostrata said:

You should be aware that "depression" is a common side effect of benzo use. You are taking diazepam 4 times a day. Most people take it only once or at most twice a day, one dose having a very long half-life, up to 100 hours.

Thank you for this. The 4 doses were introduced so that I could swallow food. I am going to taper down off the Zopiclone first and then start to taper from the Diazepam - unless circumstances or clinicians suggest I stop making any changes. I am still yet to find any clinical supervision. I see the GP again tomorrow who I expect will refer to another neurologist. Long road...... I hope I can survive and then move into recovery.

Thank you again.

June 24, 2019

1 hour ago, Harriet8 said:

Dear RichT,

Thank you kindly for your message. Yes, I was not born with the condition. I had no problems with sound sensitivity until 2010. Prior to that I had been on many drugs, including a high dose of Quetiapine (800mg), high dose of Citalopram (60mg) and had 8 sessions of ECT. I fear my dopamine and serotonin "systems" have been damaged, and affected my auditory processing accordingly. I have suffered with severe depression, and have a diagnosis of PTSD. So there are many possibilities. It is exceedingly disabling and, apart from sound therapy (which may be too stimulating for my system just now, I don't know), I don't know what I can do to help it. It is so bad, I may have to move house to somewhere quiet and find creative ways to do the normal stuff of daily life - for which I already need care. Do you have any experience of this yourself?

I appreciate your taking the trouble to message, thank you. I notice you are a mentor and in London. I live in Brighton (but am currently abroad with family for care). Do you mentor people through withdrawal or in other ways?

Warm wishes,

Harriet8

Hi Harriet8,

Yes, you’re right, you may have a number of contributing causes.

I help people through withdrawal as best I can!

I do have experience of hyperacusis myself. I had it when I was suffering from depression. I couldn’t bear the sound of voices on the TV. To enable me to say in the same room as my partner I installed an app called ‘white noise’ on my iPad and pumped it through headphones. It did help blank out the voices. The white noise was much easier to bear. I was able to read while she watched TV.

The phones I had were ‘noise reducing’, I’m not sure whether the effect would have been the same for standard phones. To be honest, I don’t what the long term effects of doing this would be, I moved out of depression a couple of months later. It might be worth a try though, at least as a short term measure.

warmest wishes,

Rich

June 24, 2019

On 6/9/2019 at 6:37 PM, Altostrata said:

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 6/9/2019 at 7:56 PM, Altostrata said:

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.

June 24, 2019

On 1/15/2012 at 2:07 PM, Francis said:

HOWEVER, rather than risking a drug switch, we recommend a direct, gradual taper from Ambien and other Z-drugs. As they all have very short half-lives -- meaning they wear off during the day -- you might try a 25% reduction per week.

If you get rebound insomnia, reinstate the full dose for several nights and then reduce by 12.5% or less per week, according to your own sensitivity.

I was doing a 10% taper from Zopiclone but then read the above which suggests that I could go faster. It does take me a lot longer to get off to sleep but I do eventually, so I think I would like to continue to taper. I am thinking of switching to 25% reductions. What percentage reduction do I need to get down to before I can stop? I'm on 1.7mg now. I have some 1.5mg, so I plan to do a week on that. I will then ask the compounding pharmacy to do 25% reductions from there. I understand that when doing 10% tapering for other drugs, the advice is to get to 98% of the initial dose, if I recall correctly? Does the same apply here?

Thank you.

June 25, 2019

I've moved the post you made in the Tips for tapering off Z drugs for sleep topic and added it to your Introduction topic.

Your Introduction topic is the correct place to ask questions about your own situation. This keeps your history in one place.

I will ask the other mods for their assistance.

June 27, 2019

Harriet, it's likely your tapering-induced sleep disruption will get worse if you speed up your withdrawal from zolpidem. Why do you want to risk this?

If reducing zolpidem makes it harder for you to get to sleep, you might want to hold on tapering for now, let your sleep catch up.

September 14, 2019

Hi Harriet8,

Just replying here after seeing your most recent PM. As Ccat mentioned above, your introduction topic is the correct place to ask for information about your situation. And begin to get a support network going, with/from other members too.

Wondering as well about your present drug regimen. What are you taking now? And any recent changes with your medications/drugs? If you could do a drug and symptom journal again, that may be helpful. I see you did one back on the 22nd of June(above). You mentioned some reservations to doing this and I'm not sure what those are. It would help a lot though, just to see, now, where you are at with medications/drugs.

And then any more recent changes to drugs can also be updated in your signature(seen below each members posts)......go to Account Settings/signature to update that with any changes too.

Wondering too, what you thought of the support groups that Alto mentioned above?

You mentioned feeling quite desperate at this time too. Including the link here, where you might be able to find a contact, by phone at least, in your area.

For those who are feeling desperate or suicidal

It can take time to build a support network. As well as find some professional care that meets your present needs. And I don't want you to feel so alone with everything. Grateful that your parents have been able to help you, as well, at present.

I'll check back as soon as I can. And direct you to some of our non-drug coping skills for/when feeling down, as well as dealing with the waves of irrritability, and such.

Hang in there Harriet8. Is the season also changing where you are? That can sometimes have an effect too, on many peoples moods and feelings. Beautiful bright hopeful full moon last night too. The harvest moon.

Welcome back.

Best,

L, P, H, and G,

mmt

Edited September 14, 2019 by manymoretodays
grammar

September 17, 2019

Dear mmt and SA community,

I am not quite clear how to ask a specific question to the community at large. I haven't been so active on the site recently. And forgive me, mmt, and the French link community for not yet having responded to your kind messages. I am facing a really difficult question after yet another appointment with a clinician today, and I thought it might be supportive just to put it out there in case any fellows here have had to face a similar dilemma:

My condition is such that I am EXTREMELY sensitive to all sensory stimulation, and have severe tremors and altered proprioception, and am unable to hold my own body up. All these things mean that I am currently existing on a bed or a sofa, going out only for medical appointments. I went to a rehabilitation centre today to see if they had anything they could offer to help me to work with the tremors. The man was absolutely shocked at how severe my condition is, far too severe to be able to do any kind of rehab. He observed that it was exhausting my body just to try and stay on the chair and the stress my system is under is extreme. He had never seen anything like it.

I left fearing that I might not survive, that there may be nobody who can help me. It was terrifying and devastating. And one dilemma I face became more urgent:

I have been taking immense care over my medication for years. I have seen some neurologists who say I have Functional Neurological Disorder and imply nothing can be done. Another neurologist I am seeing now things I need to do all sorts of tests to rule other things out. She suggested a 7 day spell in hospital to do scans, lumbar puncture etc. I explained to her that in order to just physically be in the hospital environment, I would need sedation. Even 20 mins in the waiting area is almost impossible for me. It's the lighting, the sounds of the ventilation system, everything. I can't possibly go into the coffee shop. Only just manage to last the time of the consultation and can barely walk out from the toll of that. And to stay still in an MRI or for a lumbar puncture, I would require strong sedation, possibly even anaesthesia? So I chose not to take that route when it was offered to me a while back because it felt like I would wipe out all the years of immense care I have been taking to limit use of benzos and avoid anything which stresses my nervous system unnecessarily.

Does anyone have a view? Have any of you had to go into hospital and needed to have sedation which would affect your careful drugs regime? I'm sorry to sort of just throw this out there but I'm in a pretty desperate state. I think I have severe withdrawal/discontinuation plus probably ongoing damaging effects of the meds I'm still taking. But the reaction of the clinician yesterday reminded me that my condition is extremely severe. Maybe I do have a brain tumour or something else. In which case, perhaps I have to just put my nervous system through whatever levels of sedation are required to carry out all sorts of tests. I was so sure of my self-diagnosis that I thought it wiser not to put my body through that. But maybe I have to do it?

Any thoughts would be so supportive. And if my Intro thread is not the right place for me to post this - will anyone see it? - any redirection would be much appreciated.

Thank you all.

Harriet8

September 17, 2019

On 9/15/2019 at 12:22 AM, manymoretodays said:

Wondering as well about your present drug regimen. What are you taking now? And any recent changes with your medications/drugs?

Please answer MMT's questions.

September 17, 2019

Hi ChessieCat,

Currently taking:

Citalopram 40mg, Diazepam 8mg (4 x 2mg), Pregabalin 100mg, Zopiclone 0.77mg (reducing from 3.75mg: 2.81mg on 2 May, 1.88mg on 16 May, 1.7mg on 14 Jun, 1.5mg on 9 Jul, 1.2mg on 3 Aug, 0.96mg on 22 Aug, 0.77mg on 14 Sep)

But my overall presentation is pretty consistent. I have been in this terrible state for a long time. Hence wondering whether I need to choose to have comprehensive tests - which will require eg. high levels of Diazepam?

Thank you.

Harriet8

September 17, 2019

On 6/9/2019 at 9:37 PM, Altostrata said:

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.

Harriet, this is my best guess -- massive overdosage with gaba-ergic drugs. Just the diazepam alone could be causing your symptoms. Did none of your doctors note muscle weakness could be an adverse effect of chronic benzos? As noted above, diazepam could be the cause of your hyperacusis as well.

The combination of symptoms indicates drug overdose. But a medical condition has not yet been ruled out.

There's nothing else I can add.,

September 17, 2019

5 hours ago, Altostrata said:

Just the diazepam alone could be causing your symptoms. Did none of your doctors note muscle weakness could be an adverse effect of chronic benzos?

From https://drugabuse.com/benzodiazepines/overdose/

"The signs and symptoms of a benzodiazepine overdose may differ from person to person and depend on a variety of factors. Some of the signs of an overdose include ⁵:

Trouble breathing or inability to breathe.
Bluish fingernails and lips.
Confusion and disorientation.
Extreme dizziness.
Blurred vision or double vision.
Weakness.
Uncoordinated muscle movements.
Tremors.
Profoundly altered mental status.
Stupor.
Coma."

September 17, 2019

My suggestion would be to give this benzo overdose information to your doctor. If the doctor you give the information to doesn't show any concern, I think it would be in your own best interests to find a doctor who does.

Q: Do you drink alcohol at all?

The reason I am asking this question:

From https://www.alcohol.org/mixing-with/valium/

"Some CNS depressants work on similar brain systems. Two of these drugs, alcohol and benzodiazepines, like Valium, act on the gamma-aminobutyric acid (GABA) receptors in the brain, leading to very similar effects."

September 19, 2019

On 9/17/2019 at 4:25 PM, Altostrata said:

Harriet, this is my best guess -- massive overdosage with gaba-ergic drugs. Just the diazepam alone could be causing your symptoms. Did none of your doctors note muscle weakness could be an adverse effect of chronic benzos? As noted above, diazepam could be the cause of your hyperacusis as well.

The combination of symptoms indicates drug overdose. But a medical condition has not yet been ruled out.

There's nothing else I can add.,

Dear Altostrata,

Thank you.

It's an incredibly difficult position I am in. I do now have muscle wastage for sure. However, the problem holding myself upright began 10 years ago when I was not on benzos (but came off Quetiapine and began Citalopram reduction). I was physically fit back then and strong, but struggled to hold my head up when sitting with clients (needing to support my head with my hand), found I couldn't wait in line at the post office....etc. So it was either the Quetiapine or the Citalopram (and maybe also the L-Tryptophan) that caused that. It is significantly worse now, since polypharmacy of 2012 and again 2015, and still today.

I feel utterly trapped just now and desperate to find a source of hope. I don't want to give up. I just hope with all my heart there is something I can do. I have been on the inner compass website and am reminded that 1) polypharmacy is particularly tricky, but 2) they stress not to start a taper until your system has restabilised. I don't know how on earth to do that! I can't add anything in. They say if you catch it in time, up to a month, there can be benefits to reinstating a drug. I am way passed that. And my system is at a disabling level of instability. Are there others here who have been in such a situation? How did they stabilise? Or was the only thing they could do to try and taper off despite that? It feels like an impossible trap, like I am powerless to do anything. I hope dearly that that is not the case.

I am due to see yet another psychiatrist on Tuesday who is also a neurologist. His neurologist colleague who I am due to see for an EEG in October, I do not feel particularly safe with as she prescribed Akineton despite my saying that I did not want it, or making, in my view, an adequate assessment of my current meds or history. I have not taken the Akineton and have no intention of doing so.

It is so very difficult to find safe clinicians. I am at an absolute loss here. I agree with you that we all need to play our part in respectfully educating clinicians to help us. But at the moment, I don't think I'm in a position to be requesting support to taper because my system is in dire straits. I can't think what they can offer to help. I fear nothing.

Thank you, again. I hope I am not annoying or overly negative. I just want to try and get to hope and the possibility of some improvement as things are so impossibly hard to bear.

Warmest wishes to you,

Harriet8

September 19, 2019

Hi Harriet8,

I haven't had to go into the hospital for multiple work-ups myself. And did a brief scan here, Diagnosis-FND Hope , which looks good, by the way. Not immediately going to relieve your ongoing distress, or symptoms of the past 10 years.......but good. And so, it's not a diagnosis of exclusion, and is based on "positive" findings, and then after ruling out any organic changes. I mean it is obvious to me and you, and probably anyone.......that yes, your medication history including WD, has played some role.

I think if I was in your shoes, I might consider getting some of the testing done, over time, to rule out "organic" stuff......in other words signs that something is going on inconsistent with this diagnosis of FND. Could put your mind at ease that you have not been sitting there with a brain tumor or something. As far, as sedation or anesthesia goes.........I'm not sure that benzo's would be used. There's only one way to find out and that is to talk to the anesthesiologists and/or professionals involved in each procedure. Telling them what you are presently on, even asking for pharmacology input, etc.

I think that Alto's view is sound......quite informed........AND I think regarding your present medication situation, we really have to continue to be a bit more hands off, when it comes to managing it. We can still offer some emotional support to you, in this part of your individual journey..........yet, you still need to find a doctor, to begin to make some changes to your current medication regimen. Who can then be there or get some additional support and monitoring in place for you, after what may be some significant medications changes. We can only do so much here.

You can still try and rally up some sort of support for yourself here, as you begin to do some tests, or do some changes with your medications. Sometimes the best way to do that, is to find some others here, who have been faced with other forms of chronic illness in combination with their own medications- trials and tribulations, WD's, and most importantly......having faced despair and then begun to find coping skills that helped.

When you can, post on anothers introduction, in way of support and encouragement........I think you'll find others, at least somewhat like yourself here........not exactly, but often times dealing with what you are dealing with on an emotional/situational type basis. We have some great members here, and mods, and mods who also administrate on the site. Truly.

You've gotten some input on some of your sensory issues above from RichT. And just FYI for you: to search for any topic, as far as symptoms go, and to see if there are any informational, or discussions around topics existing> first go to the symptoms and self care forum and type in the symptom you are wondering about> you should get some topics that come up there. And then if you post on a topic with discussion, just be patient, someone whose dealt with the symptom may or may not appear, in time, to futher discuss and support.

The forums are organized on the main page, or Home page here. Take a look see, if you haven't already.

You might like the Finding Meaning Forum too. 🤓❤️

You ARE making progress Harriet8, even if it does not feel that way to you now. I see progress.

Second option for finding stuff here: use your main browser, like google: Type in survivingantidepressants.org and then your topic of interest

That should lead you to on site stuff of interest too.

"I'll check back as soon as I can. And direct you to some of our non-drug coping skills for/when feeling down, as well as dealing with the waves of irrritability, and such."

Well, voila' I'm briefly back. Sheesh, have almost unloaded a auto......almost done, donating the dear thing soon. And have almost completed an application, to sit on......yet, another board........this one not boring at all though, and I'm passionate about staying involved with "peer services" here in my home state. Alrighty, enough about me on YOUR introduction Harriet8. Solly. I've just been a bit stressed is all. I don't like to be too busy overall, myself. It's just that sometimes some "have to's" come up in 2's and 3's at a time.

Beautiful fall weather here and the official equinox, season change, comes on Saturday, the 21st. Hoping for a fairly lengthy fall prior to winter.

Non-drug techniques to cope

^ right in the first post, a whole index of topics to peruse and some techniques you might find to adopt and help adapt now

Dealing with Emotional Spirals

And then this concept, not only useful for anxiety, but other emotional overwhelms:

On 4/27/2017 at 12:03 PM, brassmonkey said:

AAF: Acknowledge, Accept, Float. It's what you have to do when nothing else works, and can be a very powerful tool in coping with anxiety. The neuroemotional anxiety many of us feel during WD is directly caused by the drugs and their chemical reactions in the brain. Making it so there is nothing we can do about them. They won't respond to other drugs, relaxation techniques and the like. They do, however, react very well to being ignored. That's the concept behind AAF. Acknowledge, get to know the feeling involved, explore them. Accept, These feelings are a part of you and they aren't going anywhere fast. Float, let the feeling float off as you get on with your life as best as you can. It's a well documented fact that the more you feed in to anxiety the worse it gets. What starts as generalized neuroemotinal anxiety can be easily blown into a full fledged panic attack just by thinking about it.

I often liken it to an unwanted house guest. At first you talk to them, have conversations, communicate with them. After a while you figure out that they aren't leaving and there is nothing you can do to get rid of them. So you go on about your day, working around them until they get bored and leave.

It can take some practice, but AAF really does work. I hope you give it a try.

I guess that's all I've got, and will leave you to explore a bit.

((((((Harriet8))))))))

Keep us all updated Harriet8, and bravely venture forth around the site, when you can.

L, P, H, and G,

mmt

Just adding in: ~~Bubble's introduction here too, a moderator and veteran member: Are These Drugs Safe?~~

Managing anger

As the irritability and just whacky stuff that we go through, emotionally from the drugs, and/or in WD, is talked about, right at the start. Might make you feel less alone.

Edited September 21, 2019 by manymoretodays
minor, some clarification, bolded it, updated link

September 19, 2019

On 9/17/2019 at 10:32 PM, ChessieCat said:

My suggestion would be to give this benzo overdose information to your doctor. If the doctor you give the information to doesn't show any concern, I think it would be in your own best interests to find a doctor who does.

Q: Do you drink alcohol at all?

The reason I am asking this question:

From https://www.alcohol.org/mixing-with/valium/

"Some CNS depressants work on similar brain systems. Two of these drugs, alcohol and benzodiazepines, like Valium, act on the gamma-aminobutyric acid (GABA) receptors in the brain, leading to very similar effects."

Thank you, ChessieCat. One of the biggest problems is that I still don't have a doctor who is supporting me through this. I am desperately trying to find a clinican to help me. Every psychiatrist I have taken this particular concern to, has laughed at me and told me that 8mg is a miniscule dose and that I should stop worrying about it and address it further down the line once I'm feeling better. Ugh.

I no longer drink alcohol, but I DID use it up until 2017 when I was on several drugs. I hope that has not caused even further damage.

September 20, 2019

This is just a peer support Web site. I cannot provide a differential diagnosis regarding chronic drug overdose vs FND or any other neurological problem.

Your signature states you've been on one Benzo or another with other drugs for far more than 10 years.

In my opinion, and I am not a doctor, your combination of drugs is not recommended for any known medical condition. I suspect that you are "destabilized" not from withdrawal but from chronic drug-drug interactions and overdosing. Any doctor who would add yet another psychoactive drug to your cocktail is irresponsible.

To be honest, your situation is far too complicated for us here.

September 20, 2019

On 9/19/2019 at 7:19 PM, manymoretodays said:

I think that Alto's view is sound......quite informed........AND I think regarding your present medication situation, we really have to continue to be a bit more hands off, when it comes to managing it. We can still offer some emotional support to you, in this part of your individual journey..........yet, you still need to find a doctor, to begin to make some changes to your current medication regimen. Who can then be there or get some additional support and monitoring in place for you, after what may be some significant medications changes. We can only do some much here.

Dear mmt,

Thank you. I understand, of course, that there's only so much you can offer. I suppose it's because I have been searching for years, seen so many people, tremored, gagging and choking and gasping my way out of so many consultations with clinician's shocked at the severity of my condition but unable to offer anything, that I have returned here feeling so desperate and alone. I will have to keep trying to find someone.

One particular question that's bugging me: I would describe myself as being in protracted withdrawal because I think I am still experiencing the effects of drugs/doses which have not been in my system for at least 2 years (Quetiapine, L-Tryptophan); but I am also still taking 4 drugs, 2 of which are lower doses of what I was on 2 years ago (Citalopram down from 60mg to 40mg, Diazepam down from 15mg to 8mg). My understanding is that people are advised only to taper once they are in as stable a state as possible, with good support in place etc. I am in a highly unstable state, with very poor quality of life, no support other than elderly parents as my carers, and basically not able to go on as I am. It is very confusing to know whether I should make any changes at all, given how bad things are now - given that any further changes will require my system to struggle to adjust to that on top of the chaos already there; or if I have to make changes to my medications because the status quo is so bad and not improving. I find this very confusing.

I will try and do as you suggest and keep engaging here. I have completely lost my recovery which I miss so much. 12 steps was a very important discovery in recent years. I feel sad that I have slid so very low that I am completely consumed by my condition, unable to pray, not connecting to others, keeping my gratitude practice, service...... I miss it. I have felt so unwell that I am just trying to survive and see if I can get any help. So I no longer attend my online CODA and ACA. I still think about trying to pick these up, but am housebound and so isolated that I don't consider myself to have any relationships anymore, and find it hard to feel a sense of belonging accordingly. I wish there was a 12 step programme for this. A sponsor just now, to help me to hold myself to account, keep believing, have some structure.....would be gold.

I hope I can survive. I have never known anything like this. Thank you for being there and so generous with your time and care.

Harriet8

September 20, 2019

20 hours ago, Altostrata said:

This is just a peer support Web site. I cannot provide a differential diagnosis regarding chronic drug overdose vs FND or any other neurological problem.

Your signature states you've been on one Benzo or another with other drugs for far more than 10 years.

In my opinion, and I am not a doctor, your combination of drugs is not recommended for any known medical condition. I suspect that you are "destabilized" not from withdrawal but from chronic drug-drug interactions and overdosing. Any doctor who would add yet another psychoactive drug to your cocktail is irresponsible.

To be honest, your situation is far too complicated for us here.

Dear Altostrata,

I have only just seen this. Thank you for responding.

I do feel sad and scared to read your words that my situation is far too complicated for here. But I respect your view and your honesty and decency in being straight. It's so very hard. I wish my condition were simpler and thus more possible for me to "work it" here with others.

I appreciate your view. Thank you. My instinct was that adding in another drug was a very poor judgement and left me feeling wary about being under this neurologist. I don't know what to do about a condition that is chronic drug-drug interactions and overdosing. Presumably, that would necessitate tapering despite how unstable I already am? Very hard to remain hopeful. What would you do in my shoes?

Thank you again for your help and all that you do for so many people.

Harriet8

September 20, 2019

Hello Harriet8,

Have you seen an addiction specialist doctor? Would you consider it?

Rachel

September 22, 2019

On 9/20/2019 at 10:32 PM, Harriet8 said:

My instinct was that adding in another drug was a very poor judgement and left me feeling wary about being under this neurologist. I don't know what to do about a condition that is chronic drug-drug interactions and overdosing. Presumably, that would necessitate tapering despite how unstable I already am? Very hard to remain hopeful. What would you do in my shoes?

You need to alert your doctors to the probability that your mysterious medical condition is iatrogenic. My guess is that much of what they've diagnosed as this or that is actually a drug adverse reaction.

However, I cannot debate whether or not you truly have any kind of neurological condition requiring any element of your absurd polypharmacy. You need to get your doctors to unravel this.

October 6, 2019

On 9/20/2019 at 10:44 PM, RachelSusan said:

Hello Harriet8,

Have you seen an addiction specialist doctor? Would you consider it?

Rachel

Hi Rachel,

Sorry to take such an age to respond...

Thank you. I have actually just written a bit about this (but possibly in the wrong place? Aaargh. Still not quite sussed how to use the site most effectively). I have not seen an addiction specialist. I don't consider myself to be an addict in the sense that I loathe the drugs, hate taking them, don't take more of them than prescribed or wish to. And I don't consider myself to have a psychological struggle to work through in this area (apart from codependence - which I do identify with, but currently on pause until I am actually able to live out in the world and be in relationships with other people). But clearly, I am dependent on 4 drugs. I have recently, however, thought about approaching addiction specialists from the point of view of getting guidance of a pharmacological kind, seeking support and monitoring to taper safely. Is that what you had in mind?

Best wishes,

Harriet8

October 6, 2019

4 hours ago, Harriet8 said:

from the point of view of getting guidance of a pharmacological kind, seeking support and monitoring to taper safely. Is that what you had in mind?

Hi Harriet8,

This is exactly what I had in mind. If you get the right doctor he or she could review the interactions and supervise any slow decrease, should you choose to decrease. I don't mean to imply that you are personally an addict but our bodies are addicted to the medication, meaning any decrease that happens too rapidly could cause us harm. I consider myself to be one such person. It was just one thought since you have tried everything else.

I also see you are in the UK and I don't know if that will make any different to what I am about to say next. I am in the United States and it appears to me that a lot of the addiction specialists here are either looking to treat people that are involved with opioids, or perhaps just more geared to that type of population. So people like us might be small time. But there are also ones here that do accept the idea of AD withdrawal.

Harriet, I don't know if this would be right for you or not, it just seems you are in a really bad situation with no medical professional able to help you. It just one suggestion out of left field that might be worth considering or inquiring about.

Warm wishes,

Rachel

October 7, 2019

19 hours ago, RachelSusan said:

This is exactly what I had in mind.

Dear Rachel,

Thank you. That's really helpful clarification.

I feel absolutely desperate. It's my birthday tomorrow and I know it shouldn't matter but I'm feeling all the more surging and desperation and just....well, horrendous really. So badly wanting to try and get some kind of help and support in place, to feel like there is some path ahead. Do you happen to know, I posted something yesterday but I think I did it on someone else's thread i.e. not in perhaps the appropriate place. Do you know how I find out? Would one of the moderators notice/point out the error. It's about me but on this other person's thread - because I was responding to part of her thread using the quote box thing. I'm so sorry. I'm flustered because I'm distressed just now.

Warmest wishes to you,

Harriet

October 7, 2019

On 6/25/2019 at 1:05 AM, ChessieCat said:

Your Introduction topic is the correct place to ask questions about your own situation. This keeps your history in one place.

Dear ChessieCat,

I've made a mistake and written quite a lengthy question on someone else's thread (yesterday) - in response to something they wrote, using the quote box, thinking that was the right thing to do. Do you know how I move it to my thread? And is it possible that one of the moderators will see it/respond? I'm in a particularly rough patch just now and would welcome any support available.

Thank you so much,

Harriet8

October 7, 2019

On 10/7/2019 at 1:35 AM, Harriet8 said:

This feels particularly relevant to me just now. I'm not sure if it's the right place for me to comment/ask a question. Apologies if it is not.

I continue to go through horrendous times without reprieve. I had exchanges with Altostrata and MMT about my condition. I think the question that is coming closer to the fore for me is: do I continue to try and search for a clinician to support me, or do I bite the bullet and try and educate myself as much as I can and do it myself with the support of people on here? I have actually already begun to taper Zopiclone, but I believe the Citalopram is probably what I need to focus on, but I'm not sure.

I am housebound and pretty much bedbound/sofabound because it is so difficult for my body to be upright. I don't know how common that is? I have many challenging symptoms. I have seen around 10 neurologists, probably nearly as many psychiatrists in the space of the last year. Many have held their hands up and said basically, "What a horrendous state you are in but there is nothing I can do." Others have diagnosed FND but offered nothing to help with that. The rehab centre I went to said my condition was far too severe for anyone at their centre to be able to work with and asked why I hadn't approached top university departments. The latest neuro has done bloods, CT scan and due an EEG in a couple of weeks. Wanted to do lumbar puncture and MRI, but my tremors are so bad and hyperacusis too that I thought I wouldn't be able to stay still enough to do these without strong sedation. Anyway, I suppose I'm facing some of my early trauma stuff, wanting to feel safe, wanting an authority to turn to to help me. On the one hand, I think I need to be wise and seek out appropriate clinical support to supervise/monitor me as I try and manage my condition - which it looks like is going to require my taking the risk of trying to reduce the Citalopram, despite being so unstable, because there is no known why of stabilising. Presumably, everyone on here is needing to be mindful of risks at all stages? Seizures? How to spot when something is becoming dangerous. I reduced Citalopram too quickly and ended up calling the paramedics back in April 2018.

I am not managing to be very concise. Sorry. I'm scared of doing this on my own. I'm scared of doing it with a GP I have to teach how to de-prescribe, how to spot for signs of things becoming dangerous, when I don't know and I don't think he does! The last psychiatrist I saw suggested I go to a treatment centre to start the first reduction of Citalopram. That doesn't feel like the way to go. I would be paying for 7 weeks in yet another institution, merely to observe just the first 10% reduction of 1 of the 4 drugs I'm on, in another country, with still nobody to continue with me beyond that. I have written to the treatment centre, just to be clear so that I can rule this out as an option. They advertise helping people coming off benzos and opioids (as so many places do). I asked them how they do this safely in 7 weeks given that we now know that the brain can only cope with a 10% taper over 8-week intervals. I also asked them if they help people come off SSRIs. I await their response.

I feel trapped. It's so difficult. I am unable to live a functional life as things stand (cook a meal, go out anywhere). I have had to move in with my 70 year-old parents, one of whom has cancer. It is not sustainable for them to be my carers for any length of time, unless I start to improve. I'm looking at 5 years of tapering if I'm lucky. Most likely more. And I'm starting from a very unstable state. It's so tough. I imagine there must be others here who have faced similar difficulties?

Lastly, in my desperate attempt to find a clinician who understands this stuff, I thought about trying to track down what I believe are 8 delegates who are psychiatrists who attended the conference in Sweden. I don't know if this is wise (or will bear fruit), or if I need to abandon my hunt for someone who is informed enough to support me. I feel like I'm living in permanent crisis, hell. Forgive my intensity. It is no exaggeration. It is so very difficult to know what to do to help myself. It feels impossible to survive - both the prospect of having to ride out symptoms worse than I already have, and having to find somewhere to live to do this (maybe losing my own home), and somehow funding suitable care whilst I go through it. And so alone. I don't want to give up. But it is very hard to keep going when it is impossible to see a viable path ahead. I want to continue to try and find one......

Thank you all.

Harriet8

October 7, 2019

Dear Harriet, I saw the above on my thread and just realized you meant to post it here. I’ve been wanting to respond but I’m in the thick of it at the moment. Much love, K xo

October 16, 2019

On 9/20/2019 at 10:32 PM, Harriet8 said:

I suspect that you are "destabilized" not from withdrawal but from chronic drug-drug interactions and overdosing.

Hello everyone,

I am trying to hang in here. I fully understand Altostrata's reminder to me that this is a peer support site and not a place where I can determine FND vs withdrawal vs neurological disease. I am sharing today partly because I don't imagine I am alone in having had to work through the above and try to figure it out (with countless consultations with doctors, psychiatrists, neurologists, neuropsychiatrists....). It has been and remains such a tough and relentless process. I hope it is OK to update here, especially as I feel more certain now that I am not suffering from any neurological disease or FND (except insofar as that seems to include many of the symptoms that people in withdrawal experience).

So: my bloods are clear, my CT scan is clear and EEG not showing up anything worrying. The neurologist was suggesting the next step would be to do a lumbar puncture and then specialist genetic testing. She is obsessed with the motor symptoms and not factoring in any of the other symptoms I try to reminder her of. So I left the appointment with her yesterday thinking that I have reached the end of the line there. I do not believe I have a genetic disease. I was totally healthy physically all my life until/apart from mass polypharmacy, and the symptoms didn't begin to emerge until my early 30s. So, my instinct is to stop pursuing that line of investigation. It is hard when clinician's are suggesting things to pursue, but it just seems so unlikely to me that I have an extremely rare genetic disease and that my condition is not rather to do with the massive amounts of psychotropic medication I have had in my system for 23 years.

The latest psychiatrist I saw suggested that I consider an inpatient admission to try and begin tapering the Citalopram, given how fragile my nervous system is - I can barely sit in the chair in the consultation room. I have severely tremoring legs, profuse sweating, unable to tolerate the lights, the sound of the computer whirring, gagging, fighting for breath....etc. throughout any consultation. I explained to him that my understanding was that withdrawal is going to be a long slow, process, and one which becomes harder as you get down to the lower doses. As such, I didn't see the point of going somewhere for 7 weeks for just the very first 10% reduction. It seems to me that continuity of supervision over the long term is what I need. I decided to ring the centre he recommended (U-Center, Epen, in the Netherlands). They confirmed exactly what I suspected, that this was not a suitable recommendation. I did enquire how they support people in coming down off benzos and opioids in 7 weeks given what we know now about 10% tapering. She was unable to comment but said she would speak to the doctors there and find out if she could.

I want to thank RachelSusan for suggesting I try an addicition specialist doctor. This may have opened up a possible path ahead for me. I have now seen a GP who also specialises in addiction. Very fortunately I went armed with my drug signature (SUCH a useful thing to have - thank you to SA for bringing this to my awareness and prompting me to create this). His reaction on scanning through was that I have serotonin toxicity. I have been on serotonin meds for 23 years. I had considered serotonin syndrome several times as a possible explanation for what I was going through, but I have only ever heard of the acute syndrome which has a rapid onset and can be potentially fatal. Because I continued to be alive for years (!) despite the horrendous symptoms, I concluded that that couldn't be the explanation for my condition. I was not aware that it is possible to have a CHRONIC version. I have begun to try and look for info about this but have so far come up with nothing. Does anybody here have experience of, or identify with, chronic serotonin syndrome? I imagine that is what Altostrata is referring to by "overdose". The pattern of onset of my symptoms seems to clearly coincide with the withdrawal of the drugs as opposed to their continuation. Presumably, Altostrata is suggesting that I have ongoing overdosing, but also, therefore, that withdrawal will be even more difficult if there is far too much serotonin in the system? I appreciate that it is far more complicated than that; that serotonin toxicity will have triggered all manner of other processes to adapt accordingly. With acute serotonin syndrome, my understanding is that you have to remove the drug asap. In my chronic case, I cannot do that. So presumably the only option is to taper slowly?

I am not sure where this leaves me. I see the doctor again tomorrow. I am wary because he seemed to ridicule my Zopiclone tapering and to suggest that benzos were harmless and the Pregabalin ("very low doses"). This concerned me a lot and my heart sank. I will try and keep an open mind but go in and explain my concerns about these drugs and that I believe they need to be included in the thinking and not dismissed on the grounds that they are low doses. I hit this every time with docs, psychiatrists etc. I will look again at Altostrata's guidance on how to approach doctors appointments. I need to be respectful but it is SO frustrating that they don't know or, in my experience, believe that these drugs are a problem. Can anybody suggest the best evidence I could go armed with to share with him, to show that I do indeed need to include all the drugs I am taking in understanding my condition and in planning a way ahead?

Lastly, he is suggesting I do an fMRI to try and clarify if I have serotonin syndrome. I think this is physically impossible for me to do because the sound triggers violent tremoring and I cannot stay still. But as far as I know, there is no way to measure neurotransmitter processing, is there? Even using a radioactive marker as in a PET scan, is, as far as I know, not sufficient. I just want to avoid prolonging starting some kind of plan for recovery - and a trip of some distance to Strasbourg to have further tests. He also suggested neurofeedback and possibly cannabis oil. Again, I feel wary. My main concern is that he may not understand how fragile my nervous system is. I did consider neurofeedback earlier this year and did an initial QEEG. I was advised that it would be less effective because of the drugs I am taking. Also that I should have psychotherapy alongside in case it was destabilising. And CBD oil, I know so little about.

I think that is enough for now. I would be so grateful for any comments/feedback. I am not sure how to flag things so that people might spot this. I think I need to tag e.g. "chronic serotonin syndrome", but have not been able to do that apart from when I set up my Intro thread. Could someone let me know if I need to use "@" signs so that people mentioned see this? (I'm sorry. I'm still not very good on the logistics of how to work the site or social media generally).

Thank you all for this invaluable forum. I have been erratic in my presence as I struggle to ascertain quite what it is I am dealing with. But this is such an important source of connection and solace in the darkest of times. And it is looking like my path will be that of others here, and a long one! I pray I can find the strength to continue.

Harriet8

October 22, 2019

Hello @Kristine @RachelSusan @manymoretodays @ChessieCat @Altostrata

I feel anxious writing this as I know everyone on this site faces a whole spectrum of challenges. It's a peer support site, which means mutual sharing and caring, taking responsibility for self etc. I'm just having such a terrible time, I thought I would share and maybe a few pointers might help me find a way to greater connection and a way to keep going. I tried posting a few times recently. I neglected to put any "@" signs when referencing people which probably didn't help. I know everyone's time and energy is precious. I'm just feeling so awful and I have nobody to turn to.

One of the things I am finding most challenging is the ongoing struggle to find a doctor to support me. I won't repeat the details of my previous post but I think it is clear enough for me that I am not looking at a neurological disease. I have seen, I think, 7 neurologists now.. Whilst some of them have described my condition as the most severe they have seen, their conclusions have been varied and none have produced evidence of any underlying neurological disease which would account for my condition. Furthermore, the biggest assault to my otherwise healthy body for 2 decades has been long-term polypharmacy (plus ECT). It seems to me that this must be what is responsible for my condition. However, whilst I have recently found a general practitioner who is also an addiction specialist who might be able to help, that is looking very shaky still. This hunting for help is so tough. And it may be pointing me to the very real possibility that maybe there simply isn't anyone who can help me. Do others have experience of this? Do others have conditions which are so severe that they are dependent on carers, have lost their careers, housebound etc., and yet are unable to find a doctor who can understand or support them? And if so, have they had to take what is for me a terrifying decision to try and resort to managing an already severely destabilised nervous system by risking tapering medications, self-guided, because of have nothing left to try? I believe guidelines advocate tapering from a stable state, certainly not from the state I am an. But, with reinstatement not being an option, I can't see any alternative.

I came back from the GP I have seen twice now yesterday and I hit some serious grief and shock. His hypothesis is that I have chronic serotonin syndrome - I had only heard of the acute kind. He informed me that guidelines are clear that L-Tryptophan should never be prescribed alongside an antidepressant at a dose higher than 500mg. I was put on 3g daily for years and years, alongside 60mg of Citalopram (and many other powerful drugs). This began in 2005 (on a history of antidepressant use dating back to 1997). I was horrified to hear of such medical negligence. Aside from the rage and grief, I did think his hypothesis, that I am suffering from severe overdosing, is very plausible - as you considered @Altostrata . The question remains what on earth to do about it. I will try and be brief and maybe just list a few points/questions rather than write paragraphs as I appreciate they are hard to follow:

- Does anyone else here suffer from chronic serotonin overdosing? [I seem unable to add "tags" to my Intro thread.] If so, what do you advocate? Can the nervous system cope with tapering in such cases? What's the alternative?

- This doctor is suggesting keeping all meds as they are for now which includes continuing to take 40mg Citalopram every morning, plus Pregabalin, Diazepam and Zopliclone (and told me to stop tapering that - I am at 0.58mg). He said, "until we are clearer about what is going on". How?!

> He proposed a 24-hour urine test to measure serotonin levels in the body, but acknowledged that there is simply no way to measure what is going on in the brain.

> He wanted me to do an fMRI, but a) I can't because of hyperacusis and tremors, but b) this tells us nothing about what the meds are doing! (which he acknowledged)

> What worries me considerably is that he thinks staying on the Diazepam and Zopiclone and Pregabalin is fine because they are low doses. I have expressed my concern about this repeatedly but he does not hear me and, I can only assume, does not believe in the dangerous effects of long-term use, or indeed know how difficult and dangerous coming off these drugs is. He also never seems to acknowledge the concept of drug interaction.

- Cannabis oil: he is proposing this as a way to moderate my symptoms. I know almost nothing about CBD. I will try and research it. My instinct, though, is that adding a 5th agent into the mix could just further complicate matters. I have now stopped my nutritional supplements apart from magnesium and fish oils for this reason. Have others used CBD? Any thoughts?

I think I will leave it there for now. I am feeling profound despair and a horrible sense of reaching "the end". I am not wanting to die. It is just impossible to see a way to even BEGIN healing and this is wearing me to the bone because I have been at this for 10 years now - and, actually not yet really had a chance to start my life at all prior to that because of all the emotional troubles which led me to psychiatry's door in the first place (biggest regret of my life). I am 44 now, single, being cared for by elderly parents in a different country, straddling countries for now...... It is so very hard. I will try to continue to read the topics on acceptance and try to take care of the despair. What I am craving is AGENCY. It's the powerlessness, being physically so limited, but also being unable to start any kind of programme of e.g. tapering. I just want to feel that I am doing something which is taking me in the direction towards health. Simply waiting, on and on and on, in extreme suffering, is breaking me.

I hope my sharing isn't too much. I am so frustrated not to be well enough to be more active in engaging peer-to-peer. That is partly perhaps because I have felt somewhat on the sidelines with all the time spent trying to understand if I had a neurological condition and as such "not belonging" here. I think connection is absolutely fundamental now. I will continue to try and bring myself in here, look at others threads and keep some kind of connection. I may even consider joining actively on Twitter where there seems to be a strong community (although that feels a little vulnerable because I feel very unstable still). I feel exiled from life and living. Whilst I have lost God just now, I will continue to pray.

Thank you all for being here. Thank you, @Altostrata for creating this forum for us all.

Harriet8

PS Does anybody know of anyone who mentors people in such situations? I'm not wanting to be doing psychotherapy as such just now (I am/was a counsellor myself) but I definitely need support. Lifelines really at this point.... Maybe I'll have to find a therapist just to help me hold myself, maintain hope...etc. Any thoughts, experience be so gratefully received.

October 22, 2019

I am sorry I don't have much to add as far as advice goes but just wanted to say I follow your updates and wishing all the best for you.

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

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