Tanha: never stabilize under diazepam but want to taper

[Tanha]

Dear @Altostrata

 

please take your time and Stick with me analyzing my pattern. 

Would that be ok for you?

 

just tell me from your experience.

 

if cutting more right now seems a good idea right now I can give it a try. If holding a few days I may also try that.

 

 

i know that we cannot look into the future.

 

alto, i won‘t ask the doctors for any help!

 

i want to fight through this!

[Tanha]

@Altostrata

 

i really want to go for it, now!!!!!!!!!

any idea is welcome!!!!!!!

I am only interested in what you would do in my case!!!

 

whatever it takes!!!!

Don‘t hesitate to offer me an idea that might seem to difficult for me.

 

i am not going to waste my life in this hospitalbed and waiting to get better doing nothing. 

Doctors allowed me to cut diazepam if I want to. I just need to ask the nurse to do it.

 

I am in protracted withdrawl any way.

All is trial and error!!!! I know that.

If it is only your opinion on what one could do in my case feel free to tell me. 

.

Edited January 10, 2019 by Tanha

[Altostrata]

Your pattern is that of adverse drug reactions. But you keep on reporting worse symptoms.

 

You need to discuss the breathing problem with your doctors.

 

I cannot tell you what to do, other than this: Do not do anything dramatic.

[Tanha]

9 minutes ago, Altostrata said:

Your pattern is that of adverse drug reactions. But you keep on reporting worse symptoms.

 

You need to discuss the breathing problem with your doctors.

 

I cannot tell you what to do, other than this: Do not do anything dramatic.

Thank you. 

The breathing problem is not that dramatic at the moment. 

The disorientation/pressure on chest and feels like dying seemed to be selflimiting so far. But scary.

 

I did discuss it with the docs. They made it clear again: no drugchanges while I am in the clinic.

 

Yet, I am allowed to change my diazepam if I think I want to cut that. But they won‘t advise me on that, too.

 

 

Optometrist said: eyes ok but it would be better to change meds.

docs said no to this. 

[Tanha]

1 hour ago, Altostrata said:

Your pattern is that of adverse drug reactions. But you keep on reporting worse symptoms.

 

You need to discuss the breathing problem with your doctors.

 

I cannot tell you what to do, other than this: Do not do anything dramatic.

My emotions resonate much more inside me for a few days now. This adds to the arousel. I am overwhelmed by emotions which I did not have since July. But this is not the cause, only amplified the arousel.

 

Would it be possible that the adversereaction is getting worse maybe because the lower the quetiapine the more sedating it gets thus  my body fighting more against this too much sedation?

i only know a little about receptoroccupancy but Shep or jancarol told me that 4 times on 50 mg quetiapine is like being 4 times a day on a heavy (anti?)histamin which is very sedating. 

Also maybe only now the mirtazapine works more sedating 2 months after last cut to 15 mg. Acute wd always pushes my arousel and bloodpressure. Only after that I may get the adverse reaction become more prominent. 

This means „holding“ and slow taper at low doses is helping me nothing in terms of adverse reaction or paradoxical reaction to three breaks. (But slow taper does of course help with the brain adjust in other ways).

 

I have never been better since March at all! Just the symptoms change a bit now and then. I am glad that the flue is not back (yet), too. I think this is because I have physical hyperarousel!

 

No dark thoughts/emotions or anxiety today at all. 

No anxiety yesterday at all.

 

Please let’s cut quetiapine again some time (or anything else). 

I can do nothing else to survive three breaks but need a little help because I taper too chaotically otherwise.

 

The increase in physical hyperarousel might be because the amount of sedating drugs is still much too high. (once I hold I will get terribly low bloodpressure by all the meds, too. That‘s why I cannot hold too long or stop wd!) . My body ist struggling to survive three breaks every day!

 

i am glad it is winter.

heat would make this really bad. 

 

The arousel might have a second cause like the ct of cymbalta in March or cutting mirtazapine too fast or the Mirtazapin itself. 

I am glad that we started a systematic cut on quetiapine now.

 

Please continue to follow my case and give me an idea of when you would cut next time whenever you get the idea this could be helpful. 

I have been out of my mind due to meds or wd since March constantly!

Cutting quetiapine seemed a good idea although at the moment it puts me into worse physical hyperarousel. 

I believe hyperarousel is also part of wd and i have to get through that before it can get better.

 

I don‘t understand why any tiny sensation is too much for my nervous system. This is a terrible trend, just was covered by quetiapine all the time and hopefully is being caused by it, too.

[Tanha]

.

[Shep]

3 hours ago, Tanha said:

I did discuss it with the docs. They made it clear again: no drugchanges while I am in the clinic.

 

Tanha, my advice would be to stabilize as much as possible on your current drug cocktail and then get out of the hospital.

 

If you're not functional enough to do this, an online forum is not going to be able to help you.

 

Please note the following from the thread What will get you warned or banned

 

On 6/15/2011 at 2:45 PM, Altostrata said:

Asking for support for many self-generated emergencies. While we are sympathetic to people in distress, we're only a peer support site and we cannot do anything for people who are in the habit of self-harming in any way, be it via alcohol, risky or antisocial behavior, avoidable hospitalizations, irresponsible use of drugs, avoidable accidents, fights, or threats of suicide.

 

Also, please read this post:

 

What's required from you and your ability to self-manage

 

If the hospitalization is not avoidable, then you are too sick to benefit from an online support group and you need to work with your doctors. 

 

After you are home and able to make your own decisions, then we can help guide you off your drug cocktail. 

[Tanha]

Dear @Shep

 

ok. I understand.

 

only as i have adverse reactions thus i might not (or could so far) stabilize on this cocktail. But I will respect SA rules.

 

I experience real improvements but I think they are overrunning me, too. 

 

I am on my way home from hospital. I just cannot do that over night after having been here for quite long.

I go home now every weekend and once within the week, too. 

Being in hospital means I have access to a lot of therapies, mainly physical exercise. I was bedridden for so long and that really helps me to get back my muscles. I live in a rural area where I do not have such opportunities.

 

Having support from SA means I can start forget about the meds for some time and get my mind more on thinking about life again. I know i will have to taper by monitoring my symptoms. 

I just started to leave a chaotic destructive tapering regime behind me with help of SA.

 

I have to wd parallel to working on getting home meaning I won‘t do anything dramatic but still hoping for some advice along my next steps from you. Until then I will of course hold the dose.

I really would like to continue the Quetiapintaper but are unsure about how aggressive I can cut.

 

 

Please, Shep , @Altostrata

 

please forget that I am (still) in hospital.

It is really encouraging in wd to have someone looking at the process. I know that won‘t be happening as close monitoring as had been so far and there are no magic solutions. I know that I will have to taper while working on going home and going home! Staying on a dose for very long and stabilizing did not work before! Did that at home in March/April/May.

Hope things will be different now.

 

 

[Shep]

30 minutes ago, Tanha said:

I work very hard at getting home right now. I just cannot do that over night after having been here for quite long.

I go home now every weekend and once within the week, too. 

Being in hospital means I have access to a lot of therapies.

 

If you are in the hospital voluntarily, then you can get out whenever you want. It will help to be prepared with resources already set up outside of the hospital because it's possible you're suffering from the effects of being institutionalized. 

 

You need to find therapies outside of a hospital, as you feel able. It's going to take years to get off all of these drugs, Tanha, so you need to be prepared for that.

 

Find a therapist you can go to periodically as an out-patient. Some will work via Skype. Here's the name of one:

 

Will Hall - consulting

 

You may find more resources and ideas for researching in this thread:

 

Alternatives for Psychotic Outbreaks

 

Pay close attention to JanCarol's posts, as she lists a lot of resources. If those aren't available in your own country, it will give you ideas of what to search for in your country. 

 

Please check the Mad in America Provider list for possible resources:

 

Mad in America Provider Directory

 

Please only leave the hospital when you're ready.  And make sure you have either an on-the-ground therapist outside of the hospital or one you can reach via Skype, if you feel that you need that kind of support. 

 

 

33 minutes ago, Tanha said:

Please, Shep , @Altostrata

would it be possible to forget that I am in hospital and just continue to look at my symptompattern as we did so far?

 

I'm not interested in doing that, Tanha. We have far too many members for the small number of moderators we have as it is. 

 

When you are out of the hospital and feel you are ready to taper, then we can make a plan for you. You need to show us that you are capable of caring for yourself. Otherwise, it's dangerous for us to help you come off your drugs when you clearly are not able to care for yourself - that's why you're in a hospital. 

 

There are thousands of people who are bedbound from the effects of these drugs and are able to taper safely at home, there are many people who are elderly and don't have a lot of financial resources who are able to taper safely at home. 

 

If you are that reliant on the support of a hospital, there's nothing we can do for you from an online support group. 

 

Spend some time researching what is available for you outside of the hospital and then make a goal to get out, get set up with your support with a therapist outside of the hospital, and then get back in touch with us and we'll help you set up a plan to taper. 

 

[Tanha]

Dear @Shep

Dear @Altostrata

i am really on my way out of hospital because I found SA!

 

I really have to continue tapering and getting out parallel. Please don‘t stop support now. I would be so glad.

 

Getting out of hospital here in my country happens in predetermined steps (going home one night per week, than two, ...)

So my path is set (also by guidelines) just does not happen within a week! (rather 3 to 4). Actually one cannot decide just to leave hospital without doctors approval (which I cannot get after such a long time for like leaving like next week already). What happens is that you are not being admitted again to any hospital within a couple of months if you leave once without doctors approval. 

Happend to me before and then I was suicidal!

 

I take all your advice as encouragement.

 

I don‘t live in the US or uk,  so some of the Ressources you wrote down for me are a bit more difficult to use.

 

Money is a real issue since I lost my job.

 

In my country a lot of therapists and therapies are institutionalized. This might be a bit different in the us.

 

It is usual that one goes and stays in a clinic for drugswitches for example. Outpatient doctors often don‘t offer that but of course this would be possible.

 

I tried to taper at home for 4 months  and got bedridden because I did it wrong. I am so glad to have SA!

[eymen23]

Sorry for all the suffering and difficulty you’re going through Tanha.

 

Just to confirm, are you now leaving the hospital? 

 

I can see from you’ve got a fairly complicated drug history, with cold turkeys and various drugs. It appears to have left you stuck between a rock and a hard place i.e. things are difficult whether you’re taking new drugs, increasing the drugs or decreasing the drugs. 

 

 I really hope that with patience and the mods guidance you can find some stability. 

[Tanha]

15 minutes ago, eymen23 said:

Sorry for all the suffering and difficulty you’re going through Tanha.

 

Just to confirm, are you now leaving the hospital? 

 

I can see from you’ve got a fairly complicated drug history, with cold turkeys and various drugs. It appears to have left you stuck between a rock and a hard place i.e. things are difficult whether you’re taking new drugs, increasing the drugs or decreasing the drugs. 

 

 I really hope that with patience and the mods guidance you can find some stability. 

Yes, eymen .

 

I am getting out of hospital. We do it in steps though at first staying home a few nights then more (after being in hospital for long).

 

thank you so much for your support. 

 

How are you?

[eymen23]

That’s great news! Glad you’re slowly phasing back into life at home. Hope it goes smoothly. 

 

I’m struggling a little at the moment, but trying to put one foot in front of the other, and also have faith in the guidance/knowledge I’ve found in this forum. 

[Tanha]

like all the fellow fighters here on SA I had and still have to learn to accept to survive with healthconditions getting or staying worse for a long time. 

 

this is just so hard! reading and writing about how hard this is in SA is just helping a lot.

 

i am just so scared of this all. 

[Tanha]

48 minutes ago, eymen23 said:

That’s great news! Glad you’re slowly phasing back into life at home. Hope it goes smoothly. 

 

I’m struggling a little at the moment, but trying to put one foot in front of the other, and also have faith in the guidance/knowledge I’ve found in this forum. 

Yes, same with me. 

And one step at a time is always the best advice, though difficult to Persue.

 

In an earlier post i was thinking about „toughing through“ is what I might have overdone a bit in the beginnings of my taper spring last year. Like so many I got to SA because that did not work.

 

Now I got an idea why (paradoxical reaction to meds made holding between cuts worthless in a way).

 

This helps me to calm down (although it may not seem so with all my panic-posts).

 

I follow so many threads and feel with everybody.

 

yet i really have to work even harder on seeing the improvements. 

and accepting that there are still so many things I cannot do right now. grrrr

[Tanha]

2 days since last cut of quetiapine

1 month and 4 weeks after last cut mirtazapine

77 days since cutting levomepromazine to zero

11 months since ct cymbalta and promethazine and Wellbutrin

 

 

9. jan

 

7:30 pm.            deep deperession

8 pm.                  mild arousel,

                            Depression less painful

 

 

10. jan

 

200 mg quetiapine 

 

no broken sleep

5:30 am.         awake, physical arousel 

6-8 am.           physical hyperarousel

                        through the roof

7:30 am.         meat, cucumber

                         oats, hempprotein

                         50 mg quetiapine     

                         1 mg diazepam

                         150 mg magnesiumcitrat

                         vitamin d

8:15 am.         extreme akathisia, arousel

9:30 am.         little better but feel crappy,

                         chestburn, loss of

                         musclecontrol and control

                         over will, pressure on chest

                         burning skin, bad mental

                         akathisia, burning skin

                         despair, tense, sick

10:30 am.       no dark emotions

                         bad mental akathisia, 

                         little less arousel

11 am.             akathisia better

                         physical arousel little better

                         all too much, emotions too

                         overwhelming

                         Noni juice

12                     meat, potatoe, veggies

                         50 mg quetiapine         

                         1,5 mg diazepam

1 pm.               while resting mild breathing-

                         problems, dark emotions but 

                         not as painful

                         as i relax Adrenalin Kicks 

                         in badly (panic)

12:40.              emotions less painful

2 pm.               Vitamine juice

2:30 pm.          bad eyes, depressed, scared

4 pm.               depression, scared, 

                         arousel, all too much

                         150 mg magnesium

                          cannot allow emotions

                          painful anhedonia and 

                          depression, akathisia

5:30 pm.          50 mg quetiapine        

                         1,5 mg diazepam

                          meat, cucumber,

                          oats, hempprotein                         

6:30 pm.          painful depression, despair

                          painful anhedonia

7:00 pm.          150 mg magnesiumcitrat

                          severe depression                                                  

8 pm.               16 mg mirtazapine                          

                          egg

8:45 pm.          50 mg quetiapine 

9:20 pm.          1 mg diazepam

 

difference to days before:

 

much less physical arousel in the afternoon

bad spikes of mental akathisia

panic spike while relaxing

painful depression and anhedonia all afternoon

anxiety all afternoon and evening

feeling of musclecontrol and willcontrol

no nausea

 

 

[Altostrata]

Tanha, although I believe you are having adverse drug reactions and oversedation, I cannot in good conscience continue to advise you to taper as you report ever-increasing severity of symptoms.

 

There's only so much peer support over the Internet can do. From this point on, it's best you work with the people who can see you in person. Please seek such assistance immediately.

 

As this is a site for going off drugs, even if you wish to, we cannot advise you to continue your tapering if it's making you feel worse.

[Tanha]

Dear @Altostrata

 

thank you so much for everything. 

 

I am going to try and hold and see how things go with that.

 

If there is sufficient improvement and stability I would like to contact sa again. 

 

I understand your concern very well.

I didn‘t say that things are getting worse with tapering all the time. Rather my symptoms were sever from the beginning of taking and wd these meds. 

They just change their grim face all the time.

I tapered a lot and fast the last months.

 

all the best to you.

 

 

[JanCarol]

Hey Tanha - 

 

On 1/1/2019 at 4:56 PM, Tanha said:

i am afraid of seroquel prolong. 

 Would that really help? 

Did you mean I can also cut that, too? really?

 

Eventually, you can cut that one - but to get you off of the daytime doses, it would be good to have your nighttime dose last more than 5 hours!  So the prolong is a good solution.

 

Why are you afraid of it?

 

On 1/1/2019 at 4:56 PM, Tanha said:

tablet or capsule.

 

It's a coated tablet.

 

On 1/2/2019 at 3:37 AM, Tanha said:

Went for a long walk and could be angry

does that count as „feelings“ are coming back? Grrrrr

whrn i wished to have my emotions back I meant something like pleasure or joy. 

Instead it is more like running away from emotions if they pitch up. No good, I know. 

 

Unfortunately, it's usually the awful feelings that come back first.  Those are the ones we stuffed the hardest, so they are at the "top of the stack" waiting to come back first.  Last in, First out as we say in accounting.  Or - most intense first.

 

But it's a good sign!  When those get expressed - appropriately - and you learn to be with them, and experience them, and you get clearer and clearer, then the pleasure feelings will start to come, too.

 

On 1/2/2019 at 4:14 AM, Altostrata said:

nurse prepared diazepam with water in syringes for 2 days with 3 doses (and there might have been made a fault by the nurse in not shaking water and diazepam before putting it into the syringes) i might have gotten four times too less diazepam.

 

This is why it is challenging to taper while you are under the care of the hospital.  You have very little control over what they give you, and you don't always know what they give you.

 

On 1/2/2019 at 4:14 AM, Altostrata said:

Since you got a look at your chart, did you identify the mystery pill? We need to know about that.

 

I'm a few pages behind, I'm looking for this information on this too....

 

On 1/2/2019 at 5:18 AM, Tanha said:

Is it still of interest? It would have been a sedating ad not going well with Mirtazapin.

 

YES!!!!  It is vitally important!  There may be interactions, and it will have to be tapered eventually!  If they try and CT you from it at the hospital, it can cause destabilisation!  It may be part of the problem, now!

 

On 1/2/2019 at 5:18 AM, Tanha said:

Any any idea how long I can used liquid diazepam? I have a bottle at home but I fear after 9 months not using it staying in the cupboard it could have gone off. 

Anybody knows about this? Would make things easier!

 

I'll be looking into this.  It might say on the bottle, "Use within XX days of opening"  Or have an expiry on it.

 

On 1/2/2019 at 5:18 AM, Tanha said:

I read a lot that it is more difficult to withdraw seroquel prolong (is this true?). 

I somehow hope to avoid seroquel prolong 

 

OK the way they are dosing you, they are basically hitting on your histamine receptors with every dose, keeping you on "brakes," constantly.  

 

I don't think that being on Prolong will make it any harder to come off - what it will do is help keep your blood plasma levels steady while you taper one tablet at a time, without having to dose 4x a day.  Your night time dose will be Prolong, and your tapering will be the immediate release part of the taper.

 

On 1/2/2019 at 5:18 AM, Tanha said:

what do the prolong users tell about fatigue?

Does it help?

 

You are being hammered with fatigue now, and reactions as though you are overdrugged.

Being on the prolong should help you keep levels steady while you taper.  I believe it will help you.  It will also make it easier to separate the quetiapine from the diazepam, like Alto said.

 

On 1/2/2019 at 5:54 AM, Tanha said:

In germany i am not allowed to have immediate release seroquel for depression as annoutpatient. I could only get it by pretending that the extended release seroquel makes me vomit

 

This doesn't matter - because as soon as you cut or crush a Prolong, it becomes an immediate release.  So take the Prolong, and you will taper off by crushing & liquifying, or cutting one pill at a time.

Ideally, you will get 4 x 50 mg Prolong tablets per day.  And one of those will be what you break open to taper.

 

 

On 1/2/2019 at 5:05 PM, Tanha said:

I have diarrhea all the time

 

do I have to be concerned about malabsorption of my medication?

 

Malabsorption from diarrhea is unlikely since both quetiapine and diazepam are quickly absorbed in your digestive tract (the diazepam is liquid, and the quetiapine is immediate release). 

 

However, you may still be on too much magnesium, or on the wrong kind for you.  Mag citrate is more diarrhea causing than mag glycinate (for example).

 

On 1/2/2019 at 5:20 PM, Tanha said:

I cannot find anyone insanely dealing with hyperarousel.

 

Hyperarousel is the worst.

 

The word may be "akathisia" and there are plenty of people here dealing with that.

 

On 1/2/2019 at 10:39 PM, Tanha said:

I go to the optometrist next week.

i have problems focussing badly 

 

and severe lightsensovity of the eyes. 

 

 

Quetiapine is not good for the eyes.  I don't know if an optometrist can diagnose the problems that quetiapine can cause (cataracts are one, but there are other problems, too) - but perhaps the optometrist can refer you to an ophthalmologist?  The chances that this is Seroquel related are slim, since you've not been on high doses, and you've not been on it more than a year (do I understand that correctly?).  But - it's worth looking into.

The other possibility is that this is a focal destabilisation from withdrawal.  You withdrew from a lot of drugs last year, and it may take awhile for your eyes and your nervous system to work together well again.  I have seen people who have had vision improvements a few years out from withdrawal.

 

On 1/3/2019 at 5:09 AM, Tanha said:

I have developed very lightsensitive eyes today that I am blinded by any light touching my eyes. It is really bad. 

 

This does sound like withdrawal, and it could be from the Cymbalta, the levomepromazine, or any of the other major changes you've had in the past year.

Some of us have had to stay in bedroom, with blackout shades and sunglasses.  Sometimes the worst was just for a month, sometimes it was half a year or more.

I think that the blue-blocking sunglasses are a good start.  I keep mine by my computer, and when I am on at night I use them so that the light from the computer doesn't ruin my sleep.  Blue-blocking sunglasses have "amber," orange or yellow coloured lenses.  I find I get headaches less when I use them.

 

On 1/3/2019 at 1:53 AM, Tanha said:

(very unusual) diagnosis of emotionally unstable personality disorder at the age of 44 

 

Here's the thing - had you already been drugged at this point?  The drugs can cause this kind of diagnosis, which means it's a fake diagnosis.  Just something the doctors say to themselves to make themselves feel better.  If it was caused by the drugs, then, it's a drug-induced problem, and you don't have a broken brain at all (even though it may feel like it at times - again, because of the drugs, not in spite of them).

 

On 1/3/2019 at 4:24 PM, Tanha said:

the mystery pill has not been mentioned again for weeks. I think doctors don‘t want to give it to me anymore. 

I do not dare to ask. 

I am not taking a mystery pill at the Moment or soon.

They don‘t tell me the name. Why are you asking for it? 

Must i bring up this topic with the doctors? 

They said it is part of the treatment that I don‘t know it and that they won‘t change their mind. 

 

1.  It is unethical to subject you to drugs without your knowledge.

2.  The mystery pill - they have CT'd you off of it?  If they give it to you intermittently, it can make things worse.

3.  You have rights as a patient.    https://www.madinamerica.com/2013/09/forced-psychiatric-treatment-protection-germany-2013/  
4.  "Part of the Treatment" is forced treatment.  You have to give consent to the treatment.  

But if you are not taking the drug, and you are sure you are not taking the drug - it may be best to let sleeping dogs lie (and doctors, too).

I see I am several pages behind.  I will send this, and try to catch up......

I hope you see the shade today (I was going to say "sun" but - perhaps shade is better right now!)

[JanCarol]

On 1/3/2019 at 10:38 PM, Tanha said:

i did a huge mistake

 

i told my doctor about this forum. 

Now they can easily find out about my posts in which I say that I do not take drugs as being prescribed.

They will throw me out of hospital if they read my daily dosages in the posts.

 

hey Tanha

 

Being thrown out of hospital may be a good thing.  You may be getting institutionalised, acclimated to the institution as your carer.

 

And this is clearly an act of self sabotage. 

 

I'm sorry if there are consequences.  But if there are, then you know that some part of you (whatever it was that caused you to speak of this) wanted it.

 

* * *

Autonomic dysregulation is normal in withdrawal.  In fact, haywire - changes in body temperature, sweats, cold, headaches, digestion problems, heart rate problems, nerves firing - yes.  The entire autonomic nervous system can go into "haywire" or dysregulation, especially when you've made so many changes so quickly.

* * *

On 1/5/2019 at 12:07 AM, Tanha said:

How do heartpalpitations feel?

 

Again, these are common in withdrawal.  I have had a heart issue for a couple of years now - it seems to be withdrawal related, it may also have to do with other issues (like thyroid and adrenal) - but I can't prove any of this.

The reason I'm inclined to think it's withdrawal related - they tried to medicate it (with blood pressure drugs - and I have low blood pressure!), I took a supplement, and now it seems to have (mostly) resolved.

 

It still happens, especially in the middle of the night, for whatever reason.

I'm not the only one.  Many of us have had periods where there's weird heart stuff going on.

By all means, get it checked out - heart stuff is nothing to sniff at.

But also know that others have had it, and it was withdrawal related, too.

 

What you are describing to me is a lot of "fruit basket upset."  Where you had so many changes so fast in the last year, that many of your body's systems are all over the place.

It is hard, but you can survive it.

On 1/5/2019 at 7:55 PM, Tanha said:

I think that people who had depression before taking meds are not so much represented on SA?

 

There are a lot of trauma survivors here who had good reason to be depressed. 

 

I am one of them.  THEN I was drugged.  Nothing got better from that point.

 

On 1/5/2019 at 4:53 AM, Tanha said:

flue milder, less nausea, midday flue changed timing into the morning,

real window around 10 am since yesterday,

physical akathisia better,

feeling of no musclecontrol worse directly after cut but much better today

more appetite

and

On 1/5/2019 at 8:36 PM, Tanha said:

i feel hunger today first time in 8 months.

I am hungry!!!!

 

These are tiny windows!  Excellent signs that you are healing, and will heal.  Waves and Windows

 

On 1/5/2019 at 7:55 PM, Tanha said:

I know my spellbinding is to hide in hospital until „they made me heal“. I know it is false believe.

Yet I would have never believed depression could get this painful.

 

This is an excellent insight.  Do you think perhaps that the hospital, too, has made you worse?

Taken away your independence and will to care for yourself?

 

On 1/6/2019 at 2:06 AM, Tanha said:

my doctors opinion is true that my depression is treatment resistant.

 

This is dangerous, as Germany does ECT, also.  (Electro Convulsive Therapy) and "treatment resistant depression" is the main reason for using it.

 

There is no such thing as "treatment resistant depression," what it is is this:  "we have tried so many drugs and dysregulated the system so badly, that there's not much else we can do. . . "  That's what they really mean.  It blows my mind that they claim to not understand it.

[Tanha]

Thank you so much jancarol.

[Tanha]

.

[Tanha]

I just wanted to say that of course I will seek help if things getting too ruff. 

I am still in hospital and won‘t rush things just to continue to taper the next bit!

 

When I speak of tapering I mean it as a longterm process and i see (very) long holds (or to stop it if necessary) as part of tapering! That‘s what I learned from SA.

 

I feel safe in hospital and therapies are helpful just I see real benefit of getting used to the „training“ to get home after my long stay. To think of not going home would keep the depression and anxiety thoughts going.

[JanCarol]

Hey Tanha - 

 

On 1/9/2019 at 4:16 PM, Tanha said:

really severe hyperarousel (mainly physically less mentally)

 

This is consistent with a Cymbalta CT 10 months ago.  There were 2 other drugs you CT'd at the time, also.

 

Many of your symptoms - the burning, light sensitivity, akathisia, cortisol spikes are consistent with CT withdrawal.  Even 10 months ago.

There are other symptoms you are having which are consistent with being kept sedated on these drugs - like  the reactions you have within an hour of taking your drugs.  

There's 2 layers here - the major destabilisation from the CT's, and the daily dosing that is not letting you get better.  This is a tough web to untangle, and even more difficult since you are in hospital and really have no control over your dosing or situation.

 

How have you been since decreasing to 200 mg daily?   

 

On 1/9/2019 at 4:16 PM, Tanha said:

please, help me to find the cause as soon as possible. 

 

So sorry - but knowing the cause doesn't help anything.  

 

It is complicated.  There are many factors.

 

The traumas, situations, and states that sent you to hospital to begin with.  

• ALL of the drugs you have been on in the past, including street drugs.  Each of these change your brain.
• Every change and withdrawal and redrugging
• New traumas and situations that happened along the way
• CT's and new drugs
• Withdrawals from the CT's
• Current drugs.

So - you tell me, what is the cause of every symptom you are experiencing?

It is a bundle of symptoms, and a bundle of causes. 

 

Knowing what is what doesn't help get you out of it.

 

My father was fond of telling me, "In order to get out of a hole, you must first stop digging it."

That's what we're trying to do here.

 

On 1/9/2019 at 8:14 PM, Tanha said:

This is going to last for years

 

You don't know that.  

Yes, your taper may take a long time, and the symptoms could last for years - but it will not always be like this.

 

On 1/9/2019 at 10:03 PM, Tanha said:

If i suffer badly from adverse drug effects rather than withdrawl (as I most likely do)

gaining stability during holds wouldn’t be really possible as altostrata also wrote earlier. 

 

Here's the thing - if it is withdrawal, it could be from the Cymbalta, and it's too late to reinstate that.

 

So that's why Alto is taking your quetiapine down, to try and get you to a bearable base level.

But if you need to hold, then hold.  Holding is a step towards stability, too.

On 1/9/2019 at 10:03 PM, Tanha said:

i believe I need a fairly fixed tapering schedule 

to tough through and/or help from step to step from experienced people. 

 

I agree, I would like to see at least 3 weeks between tapers.  Your dose is not horribly high - but how they are dosing you (constantly, all day) is horrible.

 

On 1/9/2019 at 10:03 PM, Tanha said:

How will i ever be able to be in healthy control of my own wd process?

 

You will need to be out of hospital, where you are not at risk for forced drugging, or involuntary commitment, or ECT, and where you can choose your own drug schedule.

 

On 1/9/2019 at 10:03 PM, Tanha said:

How can one organize ones own  riskmanagement properly if the overall functional level is way too low (for healing and strategic thinking)

and

a taper lasting several years is not feasible in a way that one can listen to ones body and changes (because the symptoms are not withdrawlrelated and too severe putting me into panic mode all the time) and adjust the speed of the taper to this?

 

Therein lies the rub.

I think the doctors are thinking if you could just sleep for six months, you'd "get better."  But the way they are drugging you is sending you into hyperarousal.

You do need rest, and it would help you heal immensely.  I'm sure it's too much for your wife to do everything for you.

 

So - you decide.  What are you going to do for yourself?  How will you choose to live?  Select one thing that you can do for yourself.  That may be just one therapy class that you attend every day.  It may be finding a therapist or social worker to help you when you go home.  It may be - at home - just doing one thing, even if it's just washing one dish, or putting your clothes in the laundry by yourself, or taking a little walk every day.

The daily walk is a brilliant strategy.  It was how I clawed my way out.  Just one, 5 minute walk.  No more, no less.  Because it was only 5 minutes (a walk around the block), I had no excuse for not doing it.  In that 5 minutes, I moved my body, I saw natural light, trees and birds.  Just 5 minutes.

There are many tiny tiny ways to claw yourself back out of that hole.  Choose just one and stick to it, make it a practice.  Do it every day.  Then, when that one tiny thing becomes easy for you, you add another.

 

On 1/9/2019 at 11:27 PM, Tanha said:

how do I survive a slow multidrug taper for years with this?

 

How do you eat an elephant?

 

You are looking too far away.

Look at what is on your plate right now.  You are struggling with that.  Focusing on the smallest things at first, and eventually you will be able to look up to the horizon again.

By then it will be closer than you thought it was before because you will have made progress.

 

On 1/9/2019 at 8:14 PM, Tanha said:

emotions are coming back but they are terribly dark emotions. 

 

This is normal.    Neuro-emotion

 

The emotions and feelings may be real, but the chemical withdrawal amplifies them, like looking at them under an electron microscope, and they seem so big and intrusive.

 

You can look at the seed of the emotion, but please realise that it is blown all out of proportion by the chemicals and the withdrawal.

It is good that you are starting to have feelings.

Do you have a therapist?  I mean besides the animal therapy and the classes - someone that you can talk to one-on-one?

 

On 1/10/2019 at 5:17 AM, Tanha said:

Is there a fair chance that I will ever get a sufficient stressregulation in order to be able to do more than sitting dumbass on the sofa or hospital bed and trying to have as little emotional and physical input as possible? 

 

Yes, there is a fair chance of it.

But at some point you will need to get pro-active about your healing.

You've been looking for someone or something to "fix" you, when really, the only person who can adjust your emotions is yourself.

 

Making emotions into a medical issue is a disaster.  They really don't know, other than to numb them out - and in the process of doing this, making people really sick.

Emotions, feelings, thoughts - these are personal matters about relationships, coping strategies, and traumas.  They are not medical issues at all.

 

However, as you so colourfully put it - there may be a long period where sitting "dumbass on the sofa" is good for you, healing, resting, distracting, as you wait for the symptoms to settle.

I hope you see the sun today!

[JanCarol]

Hey Tanha - 

 

On 1/10/2019 at 7:11 PM, Tanha said:

Please let’s cut quetiapine again some time (or anything else). 

 

Well, your doctors said:
 

On 1/10/2019 at 6:29 PM, Tanha said:

docs. They made it clear again: no drugchanges while I am in the clinic.

 

So - there you go.  Can you see why we are hesitant, while you are in hospital?

Is there a Day Program you can subscribe to, and get therapies even though you live at home?

Is there a Therapist you can get to talk to?

 

On 1/10/2019 at 10:32 PM, Tanha said:

unsure about how aggressive I can cut.

 

Yep, me too.  We need to get you down, I would like to work on eliminating your next cut from your morning dose...gradually working towards eliminating these doses until you are only on the night dose.  It is extremely hard to parse out what is CT withdrawal, and what is drug effects.  Overall your doses are not very high, but the way they are administering them, keeps you in this funky state all day long.

I'm very nervous about an accelerated taper, and then there's this:

 

On 1/10/2019 at 10:32 PM, Tanha said:

please forget that I am (still) in hospital.

 

We can't do that!  It puts us in direct conflict with your doctors.  We might suggest a thing, while your doctors are telling you something else.  Their interpretations of the drugs and their effects are different to ours.  It is unethical for us to contradict your medical team, as that could put you in danger.

There really is a limit to what we can do over the internet!  We can't come there and hold your hand.  We cannot look in your eyes, or pat your face.  We cannot encourage you to eat, or help you get to your therapies.  If you fall into distress, there is literally nothing we can do except watch in horror.  This is why it is so essential for you to be self-sufficient and in charge of your own situation.

Shep sent you a link about self sufficiency - it would be valuable for you to read and re-read the whole page:  https://www.survivingantidepressants.org/topic/1008-before-you-begin-tapering-what-you-need-to-know/

 

On 1/11/2019 at 12:28 AM, Tanha said:

reading and writing about how hard this is in SA is just helping a lot.

 

Yes.  You are not alone.  There are hundreds of thousands of people - maybe even millions that don't know it - who are suffering from these drugs.

 

It gets worse the longer you are on them, as they deteriorate health in addition to emotional stability.

 

Have you read Robert Whitaker's "Anatomy of an Epidemic?"  The link I gave you about treatment rights in Germany was written by a German - perhaps contacting him will help you find resources in your country.

There is a Soteria in Berlin (I know you said you are in the country) - but they might also have possible resources to help you at home.  They may even have a Skype counselor, too.

https://www.nora.com/united-kingdom/en/project-references/healthcare/de/berlin_charite-soteria

https://www.facebook.com/pages/Soteria/1091126667592483 

 

On 1/11/2019 at 12:47 AM, Tanha said:

yet i really have to work even harder on seeing the improvements. 

and accepting that there are still so many things I cannot do right now.

 

Yes!  That's the spirit!

Look for the tiny things.  This moment, you are breathing easily.  This night, you have slept well.  This afternoon, you enjoyed some food.  You need to focus on THESE things, and distract from the horrible things.  As you focus on these things, it is like tiny stair steps out of your hole of despair.

And acceptance.  It's okay that you cannot cook.  Focus on what you can do.  It's okay that you might have to stay in bed all day.  Focus on your breathing while you are there.  Release yourself from judgement about what you cannot do - and focus on acceptance of what you can!

 

I hope you stabilise soon, and can participate more fully in the things that you enjoy - and perhaps can feel some enjoyment soon.

[Tanha]

Dear @JanCarol

 

thank you so much for all the concern.

 

yes, you are right with so many aspects. 

Normally i am not such a goof. I just don‘t see things clearly in my situation.

 

as i wrote: i am working on my way out of hospital and on stabilizing.

Dayclinic is the next step.

 

the meds are really giving me a terrible time. It seems I really cannot stabilize while on them in this combination.

 

i am so afraid that my paradoxical reaction will get worse the lower we get because then they are even more sedating.

I do experience hyperarousel, akathisia and most severe sedation at the same time or alternating rapidly. 

And i am feeling sooo sick all day. 

 I am really hitting brickwall after brickwall for more than a year now.

 

thanx for the links.

[JanCarol]

Hey Tanha - 

 

That's good to hear that a Dayclinic will be available to you!

it seems that the German hospitals have heard that many suicides happen after contact with hospitals, and they are working hard to prevent them.

We don't know what will happen when you reduce.  You are already on sedating doses.  It may be that as your drug load lightens, and your conflicts are reduced, your fears may not be an issue at all!

I hope you see the sun today!

[erer]

On 12/21/2018 at 11:38 AM, Tanha said:

Thank you,

this information is really valuable for me. How long was the overall duration of the severe Akathisie and how long did you suffer during day or week in that time?

was it painful?

 

can you tell my what makes you think that the olanzapine meds symptoms worse?

during withdrawl?

you also mean Akathisia? 

What other symptoms. 

 

Sorry for asking again. I have severe brainfog and don‘t know how to get to your thread. 

 

How long and fast did you taper olanzapin?

Hello Tanha,

 

I am sorry for not getting back to you sooner. I also have a bunch of your PMs in my mailbox I am hoping to answer soon. 

I was offline during christmas and after I hit a sort of a wave and so on and so on...

 

The overall duration of the severe day-to-day akathisia was - it is hard to recall - probably many weeks if not longer. It is really hard to tell now because my mind was not my own at that time. Part of that time I was heaviliy sedated. I suffered every day all day. It has always had such a pattern for me that it is worst in the morning and during the day and if it subsides, it does so in the evening.  It was not painful. It was something completely different. Indescribable really.

 

I think olanzapine made my other symptoms worse. I never had agoraphobia and during my olanzapine taking I became completely unable to leave the house on my own. I had many debilitating symptoms and as it is verly likely many were from the previous CT, I was constantly getting better from careful reductions of Olanzapine. It did not happen right away and the 1st year of tapering was complete hell, but then later I started to notice the improvements after every cut. I described somewhere how at one point, 4 days after an Olazapine cut, I could feel thoughts pouring back into my head. I had not had like real flowing thoughts for a long time. It was surely scary too, but I knew something was getting much much better in my brain.

 

I believe by now you have read my thread. You said so in one of your PMs :).

If you want to revisit, you can click this link:  

 

[Tanha]

Dear @erer

 

thank you so much. It is good to read about the way you made through this hell.

 

i wish you all the best. 

I might pm you some time again because knowing your story and that you are really alive after this hell is so encouraging.

 

I wish I could say that one drug is causing my symptoms. A bit more complicated.

 

Two more question:

did you have low bloodpressure problems while going down?

 

 Did you have paradox reactions to sedation in that the body puts you on adrenaline to cope with to heavy sedation?

 

 

tanha

 

[erer]

2 minutes ago, Tanha said:

Dear @erer

 

thank you so much. It is good to read about the way you made through this hell.

 

i wish you all the best. 

I might pm you some time again because knowing your story and that you are really alive after this hell is so encouraging.

 

tanha

 

 Sure, @Tanha

 

I am not very familiar with your story in detail, but scrolling across some of your posts I can tell you are really suffering. My advice (even not knowing details) is to take it very slow and as the first step just try to stabilise. I know it might seem impossible, but the truth is, without stabilising I do not believe there can be successful tapering of any of these meds. The reality of that might make you crawl up a wall, but making changes to your medicines while in agony... well, I truly believe that it will not make you feel any better. At all.

 

(I would like to add, that in case of a other life threatening condition due to the meds, of course one has to find special solutions, but as a rule - stabilising first, stopping the brain damage from tearing up the brain from going up and down the doses, and then once the condition is somewhat livable, starting to carefully taper).

[Tanha]

Dear @erer

 

thank you so much. That is encouragement I really need. I know you speak from experience. 

 

Holding the taper seems merely impossible if the trouble is also coming from the meds. I tried to hold for many months in spring and got so bedridden that I had to learn to sit again (of course while still in agony). My body is fighting against the heavy sedation like hell.

But i really must hold now!

 

thank you for your thoughts.

I hope you can forget your last wave (you mentioned it) soon.

[Tanha]

Dear @erer

 

do you have akathisia still while tapering diazepam?

[erer]

On 1/13/2019 at 9:54 PM, Tanha said:

Dear @erer

 

do you have akathisia still while tapering diazepam?

 

The last wave I had was me experiencing some akathisia to some extent after many years. It was very strange and out of the blue and seemed to be connected to past traumatic events. It was not right after a cut, instead I had been holding for longer than usual.

 

But answering your question, no I do not get bouts of akathisia worsening when I cut diazepam :). I get head pressure, worsening derealisation for some time, dizziness, some nausea etc. At first I had some trouble sleeping for the first week after a reduction, headaches and such "regular" things that are not too scary. But so far I would say my Diazepam taper has been way easier on me than my Olanzapine taper.

 

It is sort of difficult for me to understand your signature. Do you mind pointing out to me what drugs you are currently on and what doses?

[Tanha]

Dear Erer,

 

Wow, your reply is so helpful and detailed again. More than i could have wished for.

Things are pretty bad, still.

 

my medication 15. jan 2016:

 

200 mg quetiapine (also an antipsychotic like olanzapin) 

16 mg mirtazapine (ad)

5 mg diazepam

 

I did cut mirtazapine and quetiapine rather fast since summer. Quetiapine had to go down from 275 to 200 mg within 5 weeks because of adverse reactions (which I still have). The oversedation gives me hyperarousel. Grrrrrr. 

 

Yet my trouble started with the cymbalta ct in March last year. I was on 120 mg.

And the most severe akathisia started after cutting lorazepam (Tavor/Ativan) from 0,5 mg to zero.

 

Derealisation is ugly. I have that, too, 24/7 but dp is worse.

 

It is good to hear that diazepam only twice a day works for you. The docs divided my daily dosage into 4 portions a day.

 

How slow do you taper diazepam?

 

And you hold on the Diazepam all the years tapering olanzapin and cymbalta! Well done, really! It is so difficult to hold that stuff for so long! It is always on my mind.

 

Isn‘t it helpful to know that the sleepingproblems abate between cuts?!

[erer]

I have never really differentiated between DP and DR. How do those feel different to you? I have sort of thought about them as two sides of one thing.

 

I do take Diazepam once a day. 

 

I am tapering Diazepam 10% of previous dose every 4 weeks or longer. I started out making smaller cuts at first and during christmas I held for about 7 weeks I think.

 

It has indeed been difficult to live with the thought of having Diazepam in my  system and not being able to do anything about it, but in my case I felt the worst culprit was the antypsychotic and I really needed to get rid of that first. Diazepam was my second priority.

 

Since your Cymbalta CT was so recently (sic!) it is hard to tell which symptoms are from that and which are new or adverse reactions. 
You say you feel oversedated. Right after and more than 1,5 years after my Cymbalta and Z-drug CT when I was on my new 3 drugs (AP, AD, Benzo) I was constantly in a state where I was unable to stay awake during the day. I did not even feel sleepy as much as a feeling like "I cannot be awake and concious". Very very strange and scary.
But that has passed completely

[Tanha]

Dear @erer

 

exactly,, that sedation is really what I have, too. But also terrible hyperarousel. I am glad to read that one can survive that. 

Thank youso much for the details. It is very helpful to be able to ask these small details about symptoms and drugs. And to read this today (today is a very bad day!) is sooo goood.

 

For me it is so difficult to tell which med is the bad one. 

Good that you manage to taper diazepam so slowly. Very good.

 

dp and dr for me are very different. Dr is like you come into an anonymus hotelroom „feeling“. Dp is when I just cannot connect with my memories of myself. There is a gap that I feel strongly.

 

You are kind of Right: my cymbalta ct is rather „fresh“. Helpful to see this timeframe in proportion!

And bitter truth!

 

may I ask: how is your depression now? I read that it has been bad during taper.

 

erer, you did so great in enduring such long tapers!!!! I have to say that, knowing from your posts that it has not been a walk in the park and surely still not is.