☼ SorrowExpert -- thought I was damaged for life, but I'm not.

[Altostrata]

Very good sign that your sleep is improving.

 

Do you find your agoraphobia is worse when it's light outside?

 

Meimei has a good point, can you describe it more?

[bubble]

Oh my dear, dear, dear I refuse to call you anything else but Survival Expert, how your posts pain me! And not only me...

 

I went back to your first post which was your knocking at the doors of hope.

 

I will probably fail this taper as well.  Even if I do manage to get off of it, I am fairly certain that I have permanent neurological damage, and will have some type of protracted withdrawal syndrome that will continue for years.  I don't believe I will ever recover from the agoraphobia - the recovery rates are poor even for people not on medications and without the huge amount of problems I have.  

 

The words I highlighted for you in green speak of a strong, real surviving you which is at the moment hidden behind a thick layer of neuro emotions. The words in green challange your neuro emotions, express suspicion, mild but audible in the certainty of failure.

 

The rest is the trap neuro emotions set for all of us, a self-fulfilling prophecy: I will fail, I have permanent damage (even old philosophers said that only change is permanent!), I don't believe I will ever…

 

I'm not a big proponent of positive thinking but if you set out on your tapering journey with this kind of programming how can your chances be anything but poor?

 

Be as it may, poor still doesn't mean they don't exist! What is different for you this time is that you joined this forum.

A perfect stranger from the other side of the world has been thinking about you a lot and is taking time to write this for you. I wrote all this and then went to the next page and everything I wrote got lost so I'm writing again. And I have my own very complex problems and my own 'damage'. But I also firmly believe that if there is hope for you, then there is hope for me.

 

We all so much want to help you. You must let us help you.

 

We can choose what to believe. You have stories that say the recovery rates are poor and you have stories of happy endings. You choose to read about bad stories because that's the choice neuro emotions make. Try to make your own choice and for just 1 minute choose a different belief: people recover, there is no such thing as permanent damage. Read about neuro emotions instead.

 

Instead of choosing to read doom stories read about symptoms and self-care and how you can ease your suffering. If I remember it well you were the one writing about dying but at the same time not even taking the basic supplements… Another neuro emotion trick.

 

Read posts by Petu. Read how she distinguishes between herself and her neuro emotions, that false self that is a symptom of withdrawal. Become aware of them as something that is not real you.

 

People keep asking you about your tapering plan because they suspect you again went too fast to fulfil your prophecy of failure. Maybe I failed to notice it but I never saw you wrote down how fast you were going down. It means you are even hiding from yourself the way your neuro emotions are sabotaging you.

 

Agoraphobia is just a word. Describe the experience it means for you. Recently I wrote about my experience. I was 20 and was bed ridden like you due to constant and severe panic attacks. True, it didn't last for 3 years but for 3 months. But might just as well have lasted for 3 years and probably even longer had my aunt not taken me out. I thought it was impossible just like you think now but out of desperation I went. I was awfully agoraphobic, didn't even know the word but I chose to walk despite that and after a while my horror abated. 16 years later I travel to the other side of the world. But I had to make a different choice at that point.

Is there a social service around in case you don't have an aunt or someone like that? Who could be that one person that you could come out with?

 

I used to be a teacher so can't help believing in homework My homework for you:

 

1)    Read about neuro emotions  http://survivingantidepressants.org/index.php?/topic/137-neuro-emotion/

2)    Read about Petu's journey

3)    Write down your taper: what was your last starting dose they put you on during your last hospitalisation, how long were you on, by how much did you reduce, how long did you hold, and then the next, and the next. How did you come to where you are now

4)    Read about supplements. See how even real brain damage of Alzheimer can be reversed: http://articles.mercola.com/sites/articles/archive/2013/11/07/peanut-butter-coconut-oil-alzheimers-detection.aspx

5)    Think about who could help you to go out. Think of a place you would like to go to. Not maybe to see a doctor, not public transport, maybe somewhere nice and quiet to feel the nature, air, sun or fog on your face…

 

 

It took me a long time to write this (twice and the original version was better

 

We are all here for you. If something is difficult, it doesn’t mean it’s impossible. You can do it.

 

You are a Survival Expert turning a new leaf.

[Altostrata]

Excellent post, bubble!

[Narcissus]

Excellent post, bubble!

 

Agreed.  

 

I'm sorry you're struggling sorrow.  

[SorrowExpert]

Thanks for your wishes, everyone.  I'm still having a lot of trouble - I don't think the updose is working as well as I'd hoped as the sleep has gotten bad again, plus tons of anxiety during the day.  The real problem is also the neurological pain and symptoms, which I've had for years and seem to be getting worse.  I may have to go to the hospital for no other reason than the fact that the pain has become unmanageable and I need something to help treat it.  I've been sick with this neurological pain and agoraphobia for so long it's just broken me down, and I'm not sure that it's possible to continue tapering without doing something to address the pain, at least.  At this point I have to think about regaining some quality of life first, if that's at all possible.

[Meimeiquest]

Just sending good thoughts your way...from one insomniac to another . I wish the answers were more clear.

[SorrowExpert]

Thank you, meimeiquest.  I've just been in a complete panic state for the past few days.

 

With my agoraphobia, for years my perceptions have been "distorted" or "twisted" in a way I can't explain.  Derealization is the word that fits best...but it feels like even worse than that sometimes. On the best days, it causes agoraphobia, but when it gets bad (like today) it feels like everything is twisting and fading away, and that death is coming for me.  I'm convinced it's some strange interaction between my original neurological illness and the medication that has caused this and made my current situation so bad - I've never heard of anyone with symptoms as severe or strange as mine.  It does feel like nobody could understand completely.  I know it has to do with GABA/glutamate dysfunction, I actually think my GABA/glutamate system was dysfunctional due to illness BEFORE ever taking medication and drug withdrawal compounded things.

 

I've been so terrified that I'm going to die from this illness recently that I feel I'd do anything to make these symptoms stop - if I weren't so scared that I would die by going to the hospital, I'd probably be there already.  I feel like I'm going to have a seizure sometimes, and I think I might have had a brief one while lying in bed the other night.  If those feelings continue I'm pretty sure I'll need to get help.  I know there's no guarantee that they can do anything to help, but if it's a choice between dying and taking some medication at this point I think I'll take the medication.

 

I do have someone to talk to coming to see me on Monday.  He's a therapist (psychologist) I've been seeing for most of this year.  If I say too much there's always the chance that he might want to hospitalize me involuntarily, but I do think I need someone outside my family to talk to about my situation and what options I have.

 

My posts have always seemed pessimistic, I know.  Maybe that's just the way I am - I had a very difficult life even before I got physically sick, then medication and all this.  A life filled with loneliness, shattered hopes, and suffering.  I'd always looked for signs during my tapers that things would improve, that I was doing the right thing.  But for the most part all I ever got was more pain.

 

It's really so unfair.  There was actually a period of time before the winter came on that I really had been feeling better - even the agoraphobia improved for periods of time such that I was taking long walks away from home.  To have all that taken and end up in this horrible state on the verge of hospitalization seems too cruel.  I'm sick of being in pain, sick of years of tapering, sick of not being able to drive a car, or go to a restaurant, see a movie, or read a book,  sick of all the anxiety and misery and being a burden. **** it all.

[SorrowExpert]

Stories like this break my heart: http://beyondmeds.com/2013/02/24/dogma-anti-meds/

 

I've already been in the state she was in for years and I'm not even off the drugs...and I may end up on more if I survive this.

 

My father sees a psychotherapist, whose word he takes as gospel.  I overheard him telling my mother the other day that his therapist has told him that my symptoms and experiences couldn't be caused by iatrogenesis, and are all part of a delusional/conversion disorder that needs to be treated with medication.  He has become more hostile to me lately, and shouts at me to "GET BETTER" and says how disgusted he is with me that I have the power to "get better" if I only wanted to.  

 

My parents are elderly, and I don't think either of them really know how to help me.  My mom was just hospitalized this summer, and takes psychiatric drugs herself.  I should be taking care of them, not the other way around!

 

.

[lespaul19]

Has this been proven? You've lived this long, and in more pain than any normal person should have to go through, you are a fighter and a survivor, don't quit, there is hope for everyone.

[lespaul19]

Your mention something about thinking you had a seizure the other night? What happened?

[mammaP]

I am so angry reading your last post! How DARE that therapist tell your father that rubbish!! 

 

I can only echo what has already been said, you CAN get better and get your life back. 

I'm so so sorry you are feeling so bad. Spring is on it's way back and you will maybe 

be able to go out for short walks. I believe in baby steps, get dressed and open the door

one day, then step onto the doorstep the next, and progress with tiny babysteps.

Eventually you will be in the street, You can do it, but it will take time, lots of effort and

perseverance, Just standing in the yard and breathing fresh air will be a start, and something

you can be proud of. 

[SorrowExpert]

Your mention something about thinking you had a seizure the other night? What happened?

 

I often feel like I'm about to have a seizure when my anxiety gets very bad, but don't think I've actually had one.  The other night when lying in bed severely anxious I blacked out and when I came to my limbs were moving.  This is the second time something like this has happened; once before I woke up suddenly and found my arms and legs shaking like crazy.

[SorrowExpert]

Has this been proven? You've lived this long, and in more pain than any normal person should have to go through, you are a fighter and a survivor, don't quit, there is hope for everyone.

 

I know.  Even if I end up hospitalized and/or back on medication, I won't give up.  I owe it to myself and my parents to keep trying.  The pain just starts to wear one down after a while.  I just wish there were something that could be done to give me relief from a few of the constellation of symptoms for a while, and maybe give me some strength back.

[lespaul19]

I know the feeling, it's so tough to deal with sometimes, especially when we freak ourselves out reading negative things, I do it a lot when I'm anxious too and it never helps. I'm 2 months into a reinstatement with mixed results. It's harder to deal with when your father is like that too, but try to realize he's probably just as scared and worried as you are and wants for you to feel better so badly and it frustrates him that he can't make it happen.

Re: seizure, I've had something kind of close except I don't really black out, I get really tired, fall asleep and wake up with internal tremors, could you explain yours a bit better? Do you go from full awake not trying to sleep to actually blacking out?

[bubble]

Glad to read you again Survival Expert!

 

It seems you are not influenced by your father's rubbish as mammaP so rightly puts it and that's great.

 

I agree with lespaul: can you describe what you call 'seizure' to us more? My most awful panic attacks involved feeling like I was at the same time going to die and lose my mind completely and irrevocably, also experienced a kind of black out and not being there for some time. Then there was also uncontrollable shaking of my limbs, sweating, chest pain.

 

You also frequently mention a neurological (?)  disease that you had / have... Can you tell us more about it? Why do you think you will die from it?

 

Winter generally makes as all feel a lot worse. Even the whole nature hibernates or in a way becomes agoraphobic Thinking about winter in this way helps me to endure it. It doesn't last forever.

 

A pessimist is said to be just a well informed optimist There is nothing wrong about it although our contemporary culture is set on exorcising it alongside with other natural feelings such as sadness and grief. I was talking more about your tendency to choose negative stories on the internet, negative self-narratives, etc.

 

 

In my country they are very cautious with involuntary hospitalization. It's a serious violation of human rights so law only allows it when a person poses a 'threat to oneself or others'. UN convention on the rights of persons with disability forbids any kind of involuntary treatment. Advocate for yourself!

 

We still didn't see your tapering plan... And why are you so focused on tapering? Can't we talk about stabilization instead?

on

[Altostrata]

SE, are you able to do a little walking each day? This can help reduce symptoms.

[SorrowExpert]

I have been trying to take a short walk every day.

 

I don't know if anyone here could understand how profoundly disabled I've been these past few years.  My derealization has been so severe for years that I can barely leave the house.  Why is my nervous system so fucked up?! Why has this been so hard for me, when I tried to do everything right! Reading people's success stories just breaks my heart! They get to be healed, and I get nothing but a lifetime of agony!

 

 I cant do it! I can't taper off, it's too hard and I've been too sick for too many years! Why hasn't my nervous system ever adapted, the nerves just keep firing and firing and I never heal! 

 

My GABA system is so damaged now that it sometimes feel like I'm in acute benzo withdrawal again, even though I haven't taken a benzo in years.  I think I've created a severe kindling reaction in the CNS that can't be controlled.  Hospitalization is looking more likely again, and I'll end up on benzos again if I go there, because I will be totally unable to sleep or eat, and I know once I'm back on them it will be for life....as I get sicker and sicker as tolerance withdrawal happens...But I don't think I can stay here much longer, because I've been so anxious that I've needed someone here with me most of the time, and that can't go on forever.  I'm just breaking down under the strain and I'm afraid I won't last much longer.  I'm trying with all my strength to avoid hospitalization, because I feel I will certainly die if I go.  Sometimes I even hold out hope that they could find something physically wrong with me to explain why I've suffered so much...but that's unlikely. It's just drug damage.

 

It's such a terrible feeling knowing that you need to be free of medication to get well, but knowing you're just too sick to ever get there.  At this point, I don't even know if I care...I just wish something could be done to ease my pain for a little while.

[Wolfhound]

My heart is breaking for you, i understand you so much!

[SorrowExpert]

Look at this: 

 

http://www.nature.com/npp/journal/v28/n1/full/1300015a.html

 

It says that olanzapine increases allopregnanolone, which acts on GABA...I took Zyprexa soon after discontinuing benzodiazepines...maybe my GABA system never healed properly because I was taking a benzo in disguise! Could this be the reason I've suffered so much? So updosing may not work at all to relieve symptoms, in the same way it may not work with benzos? Am I truly doomed?

 

Edit: It seems SSRIs increase allopregnanolone as well, maybe this is another cause of withdrawal anxiety from them.  

 

Maybe the only way to come off Zyprexa is to go back on the benzos, I don't know.  If I'm hospitalized, I may end up back on them like it or not.

 

Any suggestions on what options I might have at this point to attempt to arrest this suffering would be welcome, though I know it is hard.  Sit tight and hope things improve I guess?

[Meimeiquest]

I took Zyprexa and a benzo together for like six years, highest dose 15mg, stopped benzo, restarted during Zyprexa taper, started beta-blocker, still on benzo. Yes, I am uncomfortable a lot, but not doomed. I bet there is something else going on with you, so wish it was easier to find. I just realized I had a major anxiety reaction to methyl folate, the treatment for a genetic mutation, and I was thinking it was benzo-related. I think there are a bajillion things that could be happening. I started a list of my whole life history, every weird physical or mental thing that has happened, drugs taken, etc. but this methyl folate thing just dropped from the sky. But making a list might reveal some things, and just stay alert for what might come to you.

[SorrowExpert]

Yes, you're right.  When one is very anxious I guess it's easy to come up with these worst case scenarios.  

[Meimeiquest]

Sunday for the first time I was discussing maybe giving up with my husband. How do we know all these strangers on the Internet are right? The whole medical community thinks we're crazy, yadda, yadda. Then boom I'm better. You just don't know when or how a breakthrough might come. As I told you I restarted a benzo near the end of my Zyprexa taper, before I came to this website. I think it will take me atl least 2 years to get off. But without any knowledge or support, it was the best I could do. Shortly after I came here and knew I should stop, but I was just too crazy from the Wellbutrin not being opposed by the Zyprexa, and I just could not do it. All that to say if you have to take a benzo that is not giving up, and you know a hospital will do more than that. But if you can make it without, you will be just that further along on your journey.

[MissSerene]

Sorrow: I don't know much about antipsychotics so don't have any helpful advice...Just wanted to say hang in there. The worst case is only one possible scenario...there are many others. Hoping for that for you.

[mammaP]

Hope you are having a better day SE.  

Personally I wouldn't touch a benzo, but that is just me, then you would have 

an addiction to those that will need to be dealt with.  It is very hard to cope with 

withdrawal but it does get easier, and the windows get longer and better. I hope that

you have a window very soon. 

[Altostrata]

Why was it again you won't updose slightly on Zyprexa?

[SorrowExpert]

Why was it again you won't updose slightly on Zyprexa?

 

I have updosed, I'm back at 1 mg.  6 months of work tapering gone.  And the problem remains that my nervous system has been so hypersensitive for years that I've been nonfunctional.  How many more years do I honestly have to taper this stuff, before it kills me or something else happens? Sitting here with agoraphobia staring at these walls all day? My parents are elderly, they'll be dead before I finish.  And for certain reasons, we have to move soon anyway.  I don't know how I'll do it.

 

Looking at my old records I saw that 1 mg was about where I was at in the middle of 2012.  So I've made essentially no progress in 2 years, and I'm just sicker.  In the summer of 2012 I could drive short distances.  I can't even do that anymore.  The wrenching "brain pain" is such that I can't even enjoy watching a TV program or reading a book.  I wish there were some medication that could at least improve my quality of life while I taper, but I'm not sure such a thing exists.  Unfortunately, having agoraphobia means that to attempt to get some kind of medication for pain relief means going inpatient to a hospital, which means big doses of psych drugs.

 

I wish I understood why I was destined to suffer like this.  I do often wonder if there's something physiologically wrong that compounded things, something to do with my original physical problems prior to taking medication (that was never really diagnosed).  Right now the future for myself and my family is very uncertain, and we just have to take each day as it comes.

[SorrowExpert]

Hope you are having a better day SE.  

Personally I wouldn't touch a benzo, but that is just me, then you would have 

an addiction to those that will need to be dealt with.  It is very hard to cope with 

withdrawal but it does get easier, and the windows get longer and better. I hope that

you have a window very soon. 

 

I managed to take a walk today, I don't know if that counts? I never really get any "windows" of the type people describe, except for maybe a brief period in the fall.  I was under the impression that people only got "windows" when they were completely off medication for some time -  I'm still stuck on the drug, with endless tapering ahead, and am in pain constantly.  And to come off the drug completely one has to bear relentless insomnia, which I am now too weak to do.  The only reason I keep going is because I have to for my parents sake.

 

I thank you for your wishes.  Things haven't been easy for me in a long time, but there is always hope that the future will somehow be better.

[Meimeiquest]

Yes, any walk on any day counts!

 

Umm, yes, in tapering you should recover completely after a drop before doing another...even your sleep. Maybe that explains a lot, or maybe I don't understand the question completely. Although some people say they have never stabilized.

But I really think something else is happening then in addition to tapering.

[Altostrata]

I doubt that you are cursed in any unique way. If you read other Intro topics, you will find many people in similar situations.

[bubble]

can I be blunt with you?

 

You are not doomed or damaged. You are just not tapering in the right way.

 

We don't start feeling better only when we are completely off the drug, but slow and patient taper allows us to have a good quality of life WHILE tapering.

 

You are simply making mistakes which are very natural and normal. So I think the moment you realise the WAY you are tapering is wrong instead of insisting you are more doomed than the rest of us,things will start improving.

 

That's why I keep asking you for your tapering plan. The most difficult thing about tapering is not suffering the symptoms but being patient in waiting for your nervous system to stabilise and not rushing the taper.

 

I find reading the stories of other people extremely useful. Seeing that other people feel the same makes my symptoms more bearable. And also I see the mistakes they make more clearly then my own so it helps me to learn.

 

I'm extremely happy about your walk! It's a great window.

 

What happened with that therapist person that was supposed to visit you?

 

Hug from across the world,

bubble

[mammaP]

It's great that you managed to take a walk, that is a HUGE step forward, well done. 

Baby steps, that walk is the first of many. I hope you see some benefit from the small updose.

Updosing doesn't undo all that you have already done, sometimes it seems the best thing to 

make another drop, only to find out after that your body wasn't ready just yet. Updosing for a 

while can then help. Holding a good while between drops is best, especially at the lower doses.

It can be very frustrating, and seem to take forever, but for most of us it's the only way to go. 

[SorrowExpert]

Bad news.  I haven't really been sleeping at all in the past several days - it's like my body just refuses to sleep, and even small doses of Ambien aren't helping.  Parents are discussing hospitalization at this point because I've been feeling suicidal.  I don't know what I can do, the medication has completely pooped out on me and I can't stabilize at all.  I don't even know if there's anything they could do to even stabilize me now, am I going to be in this pain forever?  Can't take it much longer.

[Altostrata]

How often have you been taking Ambien?

[SorrowExpert]

How often have you been taking Ambien?

 

Had been sleeping OK for quite a while, then suddenly went 30 hours without sleep and used it once, then another 30 hours and used a small amount again and slept a little bit.  Now can't sleep at all.  I think I've kindled my nervous system, I'm worried about seizures and ending up status epilepticus.

 

I don't know that there's anything more that we can do here, I'm probably going to have to go and hope for the best.  I can't eat or sleep now.  I wish I hadn't screwed things up so badly.

[Altostrata]

Yes, kindling is possible. The activation will gradually decrease. Please be patient.

 

For many of us, going 30 hours without sleep is not unusual. I know it's grueling. Meditation helps.

[SorrowExpert]

I think what has happened to this person has happened to me, but with Zyprexa

 

http://medications.com.s3.amazonaws.com/attachments/1293555516.3961751_guide.txt

 

I think there has been massive damage to my GABA system that can't be repaired, and reinstating isn't helping

 

"- hell drug: after discontinuation it is much harder to restart

(brain cannot handle reuse of seroquel)"

 

"- if withdrawal fails you may have just ruined rest of your life

(private hospital and support might be able
to save failing withdrawal but it will require $$)"

 

" you can die when withdrawing"

 

"- I have ruined (with help of doctors) my central nervous system

- each change (or change of drug) caused damage to brainstem that
controls vital systems and when there is too much damage you die"

 

Is there any way I can save my life and avoid dying?  I can't believe this is happening to me!