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

[SorrowExpert]

By crash, do you mean insomnia or something else?

 

Insomnia, anxiety, panic, derealization, feeling like my nervous system has gone haywire.  Things got bad for me at the beginning of December, and I still haven't stabilized yet after increasing the dose.  I feel that each time this happens, I never recover to my pre-crash state.  When I ended up hospitalized in 2012, they put me back on meds and I got sicker.  If the result of this latest episode is that I feel like I do now permanently, I don't know how I'll live with it.  I've read that this kind of sensitization of the central nervous system can happen...

[SorrowExpert]

I'm now in this state of constant anxiety that I wasn't before.  I worry that I've done permanent damage to my brain's GABA system, if the body stays stuck in this high anxiety state for too long I'll have a heart attack or stroke.  Have the drugs really killed me?  I've spent time trying to explain to my parents that I fear I may not live much longer, but they don't seem to believe it.

[Meimeiquest]

That would be highly unlikely. It's the anxiety talking. I don't know if this is right, but my thought is we might all feel like that if we were 100% in the house without any diversion.....and the real anxiety that you are having. I'm sure I've never been where you are, but when I was very bad, my husband would take me for drives in the country and that would sort of break things up.

 

Could you work with your dad to make a schedule for the day, and do the same routine every day? Especially going to bed and getting up at the same time. Since you are sleeping so little, ideally I would schedule just 4 hours for sleep and increase that when you are sleeping 4 hrs regularly (I had to resort to this when I went off benzos the first time and it worked in two days). Make sure you sleep in absolute darkness...I ended up having to get a sleep mask, some just use a bandana if the room still has some light. No TV or computer 2 hrs before sleep time. Get some exercise everyday. Work on a plan to get this agoraphobia under control. I understand it...my diastolic BP was 200 the last time I saw the dr. I was in total freak out. But you have to fight through it if you want to have a life someday.. Eat at least 8 servings of fruits and vegetables every day.

 

I don't say this to be uncaring...it's just that you don't have anybody but you right now, and you have to fight through until you are well enough to let some outside help in. We really wish hope and health for you!

[Meimeiquest]

You might some of the recent postings on Lobster's page interesting

[Petunia]

I'm now in this state of constant anxiety that I wasn't before.  I worry that I've done permanent damage to my brain's GABA system, if the body stays stuck in this high anxiety state for too long I'll have a heart attack or stroke.  Have the drugs really killed me?  I've spent time trying to explain to my parents that I fear I may not live much longer, but they don't seem to believe it.

 

I went through a stage of thinking this, I believed that I was actually dying and was trying to figure out how to prepare my family members for accepting it.  But this stage passed.  I think that acceptance of symptoms and learning how to calm myself down have helped to stop the downward spiral of negative, anxious thinking.

 

I agree with Meimei, spend some time reading stories here and you will find many people have experienced similar symptoms, thoughts and feelings, but manage to keep going, allowing the time needed for recovery.

[SorrowExpert]

 

I'm now in this state of constant anxiety that I wasn't before.  I worry that I've done permanent damage to my brain's GABA system, if the body stays stuck in this high anxiety state for too long I'll have a heart attack or stroke.  Have the drugs really killed me?  I've spent time trying to explain to my parents that I fear I may not live much longer, but they don't seem to believe it.

 

I went through a stage of thinking this, I believed that I was actually dying and was trying to figure out how to prepare my family members for accepting it.  But this stage passed.  I think that acceptance of symptoms and learning how to calm myself down have helped to stop the downward spiral of negative, anxious thinking.

 

I agree with Meimei, spend some time reading stories here and you will find many people have experienced similar symptoms, thoughts and feelings, but manage to keep going, allowing the time needed for recovery.

 

 

I'm just terrified that every time I "crash", glutamate excitoxicity does more brain damage.  I feel that something has gone wrong neurologically now, and I don't know if it's possible to return to my pre-crash state. 

[Meimeiquest]

SE, You are indeed complicated...who knows what is wrong with you . I think it's good to note what your intuition seems to be saying, but under such duress it might not be accurate...in fact, probably isn't. I will throw out here for others to comment: I would stay at 1 mg and put my efforts into choosing a doctor who might be effective, then figuring out how to pay for the doctor, and how to overcome your anxiety about going. Which I realize is a big undertaking. But your other option sucks....just continuing to play with the med and continue in this same state. You really need someone who can help you determine how much is WD and how much is "brain damage" that needs to be addressed in other ways like rehab, or an infection that you are missing out on treatment for.

[Nikki]

Sorrow when anxiety is non-stop it does a job on our thinking.  In the throes of it, I have that awful thought/feeling that I will always be this way and that maybe I should switch over to another med.  There is the thought of Oh My God am I permanently damaged?

 

I know people on and off the site who have done this and are actually well off.

 

The WD process takes more perseverance than anything else I/we have had to deal with.

 

During a Lexapro taper I went for EMDR Therapy which was helpful.  The therapist(s) no longer take insurance, so I can't do it.

There are two websites you can check out for instructions on doing it for yourself.  Emotional Freedom is one and there is a man (can't remember his name) who does this with Louise Hayes.  You can find it thru combing thru her web pages.

 

Wishing you well:)

[SorrowExpert]

SE, You are indeed complicated...who knows what is wrong with you . I think it's good to note what your intuition seems to be saying, but under such duress it might not be accurate...in fact, probably isn't. I will throw out here for others to comment: I would stay at 1 mg and put my efforts into choosing a doctor who might be effective, then figuring out how to pay for the doctor, and how to overcome your anxiety about going. Which I realize is a big undertaking. But your other option sucks....just continuing to play with the med and continue in this same state. You really need someone who can help you determine how much is WD and how much is "brain damage" that needs to be addressed in other ways like rehab, or an infection that you are missing out on treatment for

 

I fear very much going to the hospital or a doctor - the level of derealization I experience is so severe that I think I'd go into cardiac arrest if I had to go in the car or ambulance somewhere.  This makes things pretty difficult!

[Meimeiquest]

Absolutely very difficult! Bubble and Petu wrote about making a plan to very gradually build up to that capacity. Trying to go directly from homebound to a doctor's office would surely do more harm than good. But the people who do home visits aren't going to have the level of expertise that you need. Of course this is all just my opinion!

[bubble]

Our SE, I believe we just have to prove that we are more stubborn than your symptoms which keeps talking brain damage, brain, damage... and simply refuses to think there THERE IS NO SUCH THINK AS BRAIN DAMAGE ( I even posted an article for you that even 'brain damage' which is a part of Alzhiemer's disease can be repaired).

 

Our brains are very plastic and a lot of us here (me included) are a living proof of that so, excuse me for saying this again, but why do you think you would be an exception

 

So once again: these very strong and awful feelings and thoughts that you will die and that your brain has been/will be/is being damaged are withdrawal symptoms and they are not real.

 

I will continue repeating that as long as you continue repeating what your withdrawal dictates to you: you are not going to die, go into cardiac arrest or damage your brain.

 

We've been through this (a few times before but it's very likely that the difficulties you are experiencing right now are the result of a too fast taper of Zyprexa. But you never gave as your tapering plan so that we could actually see what went wrong.

 

People write date and their initial dosages, how long they were on that dosage or altogether on that med (or some other meds).

 

You made a very good first step by putting in your signature that you are currently at 0.8 of Zyprexa but you resisted sucessfully  answering our question of how you got to that dose. What was your initial dose, how long were you on it, when did you make your next cut...

 

It's very simple. For example: Zyprexa 10 mg Feb- June 2013

                                                            July 9 mg 

                                                            August 8 mg, etc.

 

Very likely you were going too fast. the way you feel says that whatever you were doing, how ever slow you thought you were going, it was too fast for you.

 

Also, professionals that you might eventually be able to see regarding psychotropic medication or that might visit you at home, most probably don't know anything about tapering and withdrawal and might just add more drugs in their experiments to fix you.

 

I feel that on this site I get most informed opinion on my situation with psycotropic medication. (Mysterious physical illness is something that should be addressed also but I think we somehow established it's not primary now).

 

So once again, give as a chance: your tapering plan please.

 

I'm very happy when I see posts from in which teh broken record stops playing and we here news of better sleep and things like that

[Petunia]

Hi SE,

 

I'm sorry you are still suffering, but very happy you are still with us, doing the best you can.  No one is going to pretend that any of this is easy.

 

Something I've noticed is that members will respond to your posts with encouraging, hopeful and positive thoughts and suggestions, trying to counteract your withdrawal induced, negative and pessimistic outlook.  But its like you don't even see or hear what has been suggested, instead, your thinking goes right back to its old track...

 

 

I'm just terrified that every time I "crash", glutamate excitoxicity does more brain damage.  I feel that something has gone wrong neurologically now, and I don't know if it's possible to return to my pre-crash state. 

 

 

I'm not pointing this out to blame you or be critical, I'm sure you are doing your best, but I see this pattern as a problem which is hindering your recovery and we need to find a way to reverse this process so that you are able to start thinking in more hopeful, positive ways.

 

What I mean is that what you wrote up there in that quote about glutamate excitoxicity, may or may not be true, its probably not true, I have no idea, but what I do know is that thinking thoughts like that and believing them is causing stress, increased anxiety and diverting your energy away from your healing process.

 

You don't have any control over your symptoms, but you do have some control over your thoughts and actions.  Notice I wrote some control, not complete control.  I do realize that withdrawal has an effect on our thoughts, naturally causing them to be more negative and frightening.  I've been going through this myself for the last 2 - 3 years, so I do know what I'm talking about.

 

This site and its members can help you with information, advice, suggestions, understanding and various other forms of support, but we can't get inside your mind and change your thoughts.  We cant get inside your body and change your actions....you have to meet us half way and do your part.

 

Of course we will be here even if you don't and there will always be someone here who will reply and try and help, but for you to start showing some movement towards recovery, this pattern of focusing only on negativity will have to change

 

I fear very much going to the hospital or a doctor - the level of derealization I experience is so severe that I think I'd go into cardiac arrest if I had to go in the car or ambulance somewhere.  This makes things pretty difficult!

 

 

Absolutely very difficult! Bubble and Petu wrote about making a plan to very gradually build up to that capacity.

 

Here is another example of how you disregarded previous suggestions about how you could overcome a particular problem, going right back to the fear driven negativity.

 

I know that your level of fear at the moment is too high for you to get in the car and drive to an appointment.  But you might be able to look out of a window.  You might be able to open your front door.  You might be able to walk to the end of your driveway.

 

Rather than focus your attention on what you cant do, focus your attention and behavior on what you can do to help yourself.  I'm not saying this because I think you should go and see a doctor, but just to point out the habit of immediately turning away from the positive, hopeful direction.

 

I've read through a lot of introduction threads here on the site and follow the progress of all new members and I've started to notice a general kind of pattern in the way people slowly adjust to the reality of their situation.  In hindsight, I can see myself having gone through the same thing.

 

Of course, everyone is slightly different in the way they deal with things, but at first, there is often a lot of anger and disbelief, this causes resistance and doubt.  I think that fear can sometimes cause some people at first to be suspicious of new information on a web site and send them running back to the security of previously trusted authority figures.

 

This is just my own observations, but I've noticed that most people quite quickly manage to overcome the anger, doubt and resistance to the new reality and manage to accept the new situation, adapt to the new circumstances of their life and start working with solutions..... but some people take longer to reach this point.

 

Reaching this point, in my opinion is a major milestone in recovery.  Its the point where the person being helped, actively starts working with the person/people who are trying to help, rather than against them.

 

I'm not a medical professional, so please use your own judgement before you take notice of anything I write, but I think you will start feeling better when instead of searching 'glutamate excitoxicity',  you start searching for things like 'guided meditation', 'yoga for beginners', 'how to calm down', 'natural anxiety relief' or have a look through our extensive list of suggestions here:

 

http://survivingantidepressants.org/index.php?/topic/1112-non-drug-techniques-to-cope-with-emotional-symptoms/

 

.....and spend some time actually doing some of the techniques you read about.  Not everything is going to work or be helpful, but something will be, eventually, if you try enough.  Just the act of moving your focus from a negative path to a more hopeful, optimistic path is going to be a calming signal to your nervous system which will help it to relax.

 

I'm so sorry that all of us are in this situation where something which was supposed to have helped us has ended up harming us.

 

 

 

 

[bubble]

hello SE, we haven't heard from you for a few days...

 

hope everything is ok.

 

love,

 

bubble

[SorrowExpert]

hello SE, we haven't heard from you for a few days...

 

hope everything is ok.

 

love,

 

bubble

 

Hi Bubble,

 

Two social workers have been by in the past few days - I think they're moving to section me soon and transport me to McLean Hospital.  I doubt that there's anything they can do to "fix" me.   I've attempted to contact Monica Cassani (who was in a situation like me, bedridden, though she managed to recover) and Robert Whitaker so that at least if that happens my story is remembered.  I'm so anxious I feel like I can't breathe a lot of the time.  I have such an intensely overactive nervous system that I don't think I'll live very long if I end up in the hospital, the same way Monica felt.  I have been trying to come to terms with death.  If anyone reading this has any contacts that might be able to help with my situation I would appreciate it.  I hope there's some way out for me.

[mammaP]

Hi SE, Monica Cassani is right here, one of us and posting many helpful topics, here is just one of many many 

topics she has shared with us. This was just the first one that I came across just now, click her name and you will find lots more.

The thing that I admire most about her is that she had the will to accept and work with what was happening to herself.  She has done it,

is so much  better and is getting her life back. She has fought to get where she is and is a shining example for us all.

 

You can do this too, we are all in this, some have been, in fact are, as bad as you are now. I know you don't believe that

but it is true. If you go to hospital you will likely be given more drugs.  I almost went there myself because I thought my

situation was hopeless but thanks to everyone here, the people who have supported me and everyone else who comes

in distress, I am still here, alive and much better. You will be too, you just need to BELIEVE it. 

Petu has written a lovely post for you and it is very true, please listen and try to work with us, we are all here for each other

and it would be so good to see you accept that you can recover in time. 

 

Just one of Monica's posts. http://survivingantidepressants.org/index.php?/topic/5629-novel-way-of-thinking-about-anxiety%E2%80%A6-httpwpmep5nnb-al6/

[Meimeiquest]

SE, I so feel for you. Monica is GiaK on this website. Please keep us posted. I think her dr. recommended atenolol for crises...you can take that at home if you want to. I think she and Alex both believe dietary intervention is critical. Please keep in touch, we are thinking of you.

[Altostrata]

SE, you are writing this script, the social workers are there because you want them to be there, being institutionalized is something you've been wanting for a long time.

 

You could have designed a different plot. I hope some day you realize this.

 

I hope you get good treatment at McLean and your discomfort is relieved.

[SorrowExpert]

SE, you are writing this script, the social workers are there because you want them to be there, being institutionalized is something you've been wanting for a long time.

 

You could have designed a different plot. I hope some day you realize this.

 

I hope you get good treatment at McLean and your discomfort is relieved.

 

It is the last thing I really want.  What I want is to be free of pain - 8 years of nonstop suffering.  My father sees me bedridden now and contacted them, though I recognized the possibility of it coming to that when I was doing "better" a month ago.  They're concerned about my mom too - she's not doing well either.   

 

Maybe the plot could have been different, maybe it still can be.  I hope my story isn't over yet, because I'm still alive and I'm still fighting, but against the intensity of what I'm experiencing it is very difficult.  I'm not stabilizing back to where I was and I don't know what to do, I try to control my thoughts and think positive but...  I admire the strength of you and all other members of this site that are working at and have succeeded in this process.  I'm just overwhelmed. Please try not to judge me too harshly.

 

Whatever happens I'll try to keep checking in, the support of everyone here is such a blessing.  On a positive note, I have been able to sleep at least a few hours most nights.  

[Meimeiquest]

SE, I would never feel any desire to judge you...I cannot imagine what this is like. You have shown amazing perseverance and courage...right now what you are lacking is hope, and sometimes I just want to shake you till it shakes out, which is wrong and irrational of me. Could you somehow find enough hope to ask to get that "Damaged for Life" tag line off your thread? I really cannot stand it! It flies in the face of everything this site is about. But SorrowExpert I can honor...even if you were well tomorrow you would be an expert in sorrow...it's actually needed in this broken world.

 

Where are these social workers from?

Is it possible you need pain relief more than psychiatric relief? Could they help you find that expertise?

When you talk about getting worse with each episode, do you think it might be the progressive destabilization that we all experience when we jack our meds around, just worse because of your sensitization?

Do you think you might have Lyme? Based on your few sentences, it sounds like you MIGHT have experienced some type of non-bacterial encephalitis.

 

Thanks for writing today...please write when you can.

[bubble]

Dear SE, I was very happy to read your last post.

 

Maybe Alto wanted to provoke you on purpose for all of us and primarily you, to see your strong and fighting spirit.

 

I think about you a lot and I have no doubt in my mind that you will come out of this a winner.

 

I don't understand much about this latest developments but even if you decide to go to an 'institution' for a while, it is far from being an end: it might bring something good. Temporarily give you support you don't have around now.

 

It could also result in the conclusion that you don't need it and are better off taking care of yourself.

 

I asked to be admitted to hospital only once for a 3-week 'programme'. It was not a real psychiatric ward so there were no drugs but after that experience I realsied that when in crisis hospitals can't do absolutely anything for me.

 

Just stand your ground as karma wrote to one of the members recently, stay in charge, demand and refuse.

 

I look forward to your future posts and we remain here for you!

 

big hug,

bubble 

[bubble]

where are you now dear SE?

[Fizz]

SE, been reading your story and wondering how you are. Can really sympathise as lately I've felt as though I'm plugged into the mains, adrenaline, etc. Withdrawal is the most hellish thing but you can't die from the panic. I've been there. I'm pleased that you managed a few hours sleep, that's positive. Hope that you are managing to push through this. Sending hugs. Xxxxxxxx

[bubble]

I often think about our Sorrow Expert and wonder where she is now... She said she would check in wherever she is...

 

Sorrow Expert, if you are around, we'd like to hear from you.

 

bubble

[SorrowExpert]

Hi bubble, Im a he actually! Im still here. I had to leave my home and move into a new place, as the building I lived in was sold. Been extremely difficult - I am still suffering greatly physically and trying to adjust. I dont have a proper pc running yet, so im using a tablet for now, so ill have to keep this short. For some time before the move I didnt post due to how hopeless my situation felt. Still does. Dont feel strong enough to taper, but hard to live like this. But even so I think I will continue to try to check in.

[bubble]

I browsed down before logging off and it showed who of the members is on: I saw SorrowExpert!

 

(After I posted last time I realised out SorrowExpert is not she but he: sorry )

 

Thinking about you and glad to see that you are around even if you don't feel like posting.

 

big hug,

 

bubble

[bubble]

crossed in the post

 

your post came as I was writing mine. I know things are hard for you in many ways but as I said, I'm glad you are here with us

[Petunia]

I'm glad you are still with us SE, when you didn't post for a while I was hoping that you are ok.  Moving can be very stressful, I had to do it when I was in acute withdrawal.

[Meimeiquest]

SE, So glad to hear from you! Someday maybe you can tell us more, but for now, just glad you are still able to hang around at all!

[mammaP]

Hi SE, it's good to hear from you, I had been thinking about you too.  

You've done well to move while suffering withdrawal, it isn't easy at any time but must have 

been very difficult. You did it though and are here to tell us about it so that is great. 

I hope things start to look up for you now, sometimes a change can be a good thing and

help tremendously. 

[SorrowExpert]

Hi, checking in again. I'll have to keep this short as im still using the tablet. Is anyone else having sleep troubles? As the spring has come on im having a lot of trouble, though I haven't changed my dose at all since I crashed. Symptoms are pretty bad and I'm once again scared of hospitalzation. I hope this passes.

[Meimeiquest]

So glad to see your name pop up! Is anyone having sleep problems? In my hometown, that would be answered with "Is the pope Catholic?" Actually, there have been some young guys through coming off Zyprexa....they were sleeping fine...not.

 

What are your main symptoms now? Can you tie them to anything about spring...light, allergies, etc?

 

Hang in there....you're getting to be a pro at staying out of the hospital.

[SorrowExpert]

Main symptoms right now are the neurological stuff ive always had, plus agitation, insomnia, and the horrible derealization and depersonalization. That's by far the worst symptom and it gets worse the longer I go without sleeping, making the anxiety worse and compounding the sleep problems a lot. I was sleeping much better in the winter, probably becauee there was less light.

 

I don't know if I should confess this, but I think about suicide a lot. In my case, I think of it more as euthanasia...after suffering so badly for so many years I don't know how much longer I can do it. Just being alive is pretty much constant torture.. I can't though..I couldn't do that to my family. I wish I could be well for them but it seems hopeless.

 

I've been trying to find local physicians who I might be able to get to who understand drug withdrawal issues but so far I haven't had much luck. If there were some way to lessen the derealization symptom even a little bit through the use of another med I'd try it at this point. But since it is withdrawal related I don't know if anything will work. I just wish I'd had a successful taper the first time around, when things were easier.

[Petunia]

Hi SE,

I'm sorry you are still suffering, but thank you for letting us know how you are doing, I'm glad you are still with us.  As I've been reading through posts the last few days I've noticed that lots of people are having more sleep issues at the moment, more than usual.  Some people put block out curtains on windows and keep the bedroom very dark.  You can also use an eye mask. I covered my window with foil to keep the light out, I wanted do do something right away to find out if it helped, and it did.

 

Do you feel like you have settled after your move?  I had to move while in acute withdrawal and it increased stress a lot.  It took me a long time to feel settled again, I'm sure it set my recovery back.

 

Are you able to get out and do a little exercise?  Walking or just sitting outside?  I know it feels hopeless at the moment, but that's just the withdrawal talking, you will recover and start to feel better, it just takes some people longer.

 

Do the best you can to take care of yourself, for your family and for yourself.  One day you will be glad you did.

 

Petu.

[SorrowExpert]

Thanks for replying. If I were off the drug and knew I was healing this would be easier. But I'm still taking the crap, and still not sleeping well. And people suffer for years after coming off completely, which will take me years.

 

Life has been very desperate the past few days and I sometimes even think in this desperation of going to the hospital again.

 

I try to walk a little bit, can't do much. Of course one of the problems is that when one feels terrible one doesn't want to exercise, which makes sleep even harder.

 

Damn this ******* life and the ******* drugs!

[Meimeiquest]

I don't know how it will be for you, but for me the time tapering was worse than after (but then I ran into trouble with a different drug--at least you won't have that problem). I think for me the post-taper period was about four months. But of course being on all these other drugs has an impact. Just saying we're all different, except we all have to focus on today.

[SorrowExpert]

You seem to have gotten off fairly easy with Zyprexa, Meimei. I have to say that I am quite jealous!