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

[Meimeiquest]

You are right, but I am paying in other ways. However, for all my multi-drug issues, I have had an easier journey than many. I really don't know why. And you've had a harder time than many....I wish we knew why.

[SorrowExpert]

In my case I think there has been some permanent damage done to my GABA system. I don't understand why or how exactly, but that's what it feels like. When increased my Zyprexa dose over the winter, I ended up feeling much worse and having some seizure like episodes, as if it was smashing up and damaging my GABA system. I have no idea why raising, not lowering should cause this. What is one supposed to do when both raising and lowering dose causes intolerable symptoms? It seems everyone else gets some kind of sign of improvement or something, and I just keep getting sicker. I'm tempted to just let doctors pump me full of benzos and pain meds to make whatever is left of my life as comfortable as possible, because without any hopeful signs this suffering is pointless.

[bubble]

I think we spoke about this many times before that there is no such thing as damaging of the GABA system. Just messing up with it. In some cases really badly. But even then, we recover. It just takes more time.

 

Also, the reason we have recovered is that we resisted badly and for as long as it took the urge to increase or decrease. It took a lot of time but it is paying off in the end. It's perfectly understandable that both lowering and raising will cause symptoms and prevent healing. It's only stability and time that heal... 

[SorrowExpert]

I guess. I know also that some people just don't get better. For example: http://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/

 

I don't intend to spend my life in some care facility, so I must take all possibilities into account. My parents will probably not be able to help take care of me by the end of this year or next. I just don't have time anymore, I have to hope for some serious improvement somewhere in that time frame.

[Meimeiquest]

Grrr, lost my response to you. Trying again, you do know that SA is intimately acquainted with that article. You can read the comments on the copy here if you want my thoughts. If you need to be functioning in a year, I highly recommend you don't spend another minute on doomsday reading.

 

I think it is abnormal that you are very sick after 3 yrs. of tapering. I would love for you to see the best neurologist in your city, whoever that is. Definitely don't drop till you are reasonably stable. Study histamine frontwards and backwards, look into the low histamine diet. "Zyprexa is arguably the most potent anti-histamine on the planet." Read CFS Unravelled (e-book), although it is about CFS, I think it is the best guidebook on withdrawal syndrome in book form. Read and watch at kellybroganmd.com, mensahmedical.com, The Walsh Institute. See if you resonate with nancymullanmd.com. Read the whole symptoms thread.

 

Make a plan for progressively getting past your agoraphobia and for helping with things around the house. Make a daily schedule and a sleep schedule. Get your warrior on!

 

I hate to write like this, but you do have a serious problem, and if you just disappear to pop in now and then with how hopeless you feel, your life is not going to be the one you want. But that said, my heart really does go out to you. And post more often...I'm just on a tablet as well...you can do this!

[SorrowExpert]

I wish I understood what went wrong over the winter. I had been doing fairly well, and then the darkness came on and I had trouble, so I raised my dose a little and all hell broke loose. My symptoms used to be managable to a degree, but now pain just shoots through me all the time and I can't stabilize at all. Updosing definitely "damaged" (though I know thats a word that's discouraged!) something. I don't know how else to explain the severe change, though.

 

It's impossible to overcome the agoraphobia with such severe pain, and I can't see anyone about the pain because of the agoraphobia. And I don't think I'd want to take addictive heavy pain meds anyway, and there's no guarantee they would relieve this bizzare iatrogenic pain anyway.

 

Neurologists don't have any answers. I had a complete workup in late 2012 and everything was fine. Because of my mental health "history" doctors don't particularly want to take any time with me anyway, even when I could gey to see them. Once they see you take Zyprexa everything focuses on your "mental illness" and "medication noncompliance" etc..even though I didn't originally take the drug for a mental health issue.

 

I know that it's all related to the medication though - I remember once in the hospital I tried missing a few doses of medication...and before long I started experiencing the most horrific symptoms - the derealization accelerated to the point I thought the world was going to vanish completely, my vision began "twisting" in a way I can't explain, my legs started stiffening and my temperature started shooting up. I think it might have been the beginning of some form of neuroleptic malignant syndrome. A single dose of medication stopped it.

 

The realization that a fragment of a pill is all that stands between me and a horrible agonizing death like I've described above haunts me constantly, that and my experience over the winter shows me that this taper is an absolute life or death game, one in which I currently have very little real life support that understands whats going on. I know that at any time something further could go drastically wrong with the medication or taper and cause my death. What if they stop making the generic version of medication I use to cut? What if I'm unable to get it prescribed for some reason? I die in agony. What if I slip at home and injure myself and have to go to the hospital overnight? My taper gets messed up, and I die in agony when they start trying to pump me full of 10 mg pills or whatever at the hospital instead of what I have measured out here.

 

Living with that kind of existential anxiety is extremely difficult, even without the pain on top of it.

[cymbaltawithdrawal5600]

 

What if they stop making the generic version of medication I use to cut? What if I'm unable to get it prescribed for some reason? I die in agony. What if I slip at home and injure myself and have to go to the hospital overnight? My taper gets messed up, and I die in agony when they start trying to pump me full of 10 mg pills or whatever at the hospital instead of what I have measured out here.

 

CBT works wonders for thoughts like these. You can do it free online.

[Meimeiquest]

I know, this is very serious, and the things you describe, except insomnia and maybe derealization, are not typical.

 

This is my hypothesis (I am so out on a limb--keep that in mind)...you have some sort of genetic variance that was not even active. Those things can be activated by weird viral infections. You also are a funky processor of drugs in some way with your liver enzymes, and you have whatever makes us here extremely sensitive to drug changes. I was shocked to read that the only things genes do is code for protein synthesis, and proteins that catalyze chemical reactions are called enzymes. These genetic variances in most people are just little parts of the gene, calls snp's (snips). If you have a whole gene gone awry, that's usually pretty devastating.

 

So here's my reading recommendations:

The thread here entitled Dr. Yolanda Lucire: Adverse Reactions to Psychiatric Drugs

Nutrient Power from Amazon

Mensahmedical.com (resources). Note under lab that you can have labs and consult without going there, although that is not ideal

23andme.com

Nancymullanmd.com (note she has a free call in session each week)

Genomind.com

 

And there are others if you get through that and nothing has clicked.

 

Always wishing you well...

[SorrowExpert]

But in all this, the good news is that I seem to be sleeping OK again for now. I really don't know how I'm going to finish this taper, but I just know I have to succeed. It's hard to not look further ahead, but for now it seems doing so is counterproductive and I have to just be thankful when I get a good day here and there.

[SorrowExpert]

Thanks much for the suggestions, Meimei, cymbalta.

[Meimeiquest]

I also wonder if it might be useful to really explore the pain. Is it along a nerve? Is it in the muscle tissue? The joints? Those all could come from different sources. Does anything make it better or worse?

[Narcissus]

I'm so sorry to hear that you're so debilitated, SorrowExpert.  It's mysterious and frightening how some of us can struggle so much and for so long.  Your situation sounds complex, and it looks like you're receiving some great comments/advice.  Please keep us updated, I'll be thinking of you.

[SorrowExpert]

Meimei, I don't know how to explain what the pain feels like exactly. I can't localize it on my body...can't point to a part of my body and say "this hurts." The pain comes from everywhere and nowhere at the same time - it's some kind of a problem of sensation in the brain. Like akathisia maybe? It doesn't come with an urge to move my body though. Just an awful "internal" sensation. Like nerves firing too much?

[Meimeiquest]

it sounds like it is related to the nervous system somehow. Just be with it, and it will come to you. I had fibromyalgia pain before I came apart with Cymbalta and stated the major drugs, which relieved it. Pain (discomfort is probably the right word) has come back now, and I am surprised how much more I can quantify and understand it. I guess having to be my own doctor mostly for the past two years is teaching me some things.

[Petunia]

 The pain comes from everywhere and nowhere at the same time - it's some kind of a problem of sensation in the brain. Like akathisia maybe? It doesn't come with an urge to move my body though. Just an awful "internal" sensation. Like nerves firing too much?

 

This is what I get but I wasn't sure it was akathisia because even though I feel an incredible inner restlessness, I don't move around a lot, if anything it puts me more into a kind of frozen state, small movements help, like wiggling my toes.  I recently found more information and hope from this blog:

 

http://akathisiainfo.wordpress.com/

 

The woman who started the blog did recover and she provides a lot of helpful ideas, there are also comments from people who have experienced it and what helped.  Many of the symptoms overlap with the symptoms of psyche drug withdrawal.  The March archive section has a full list of symptoms.

 

“The body and mind want to heal. The natural state is for the body to rebound back to homeostasis. You will eventually heal.”

[SorrowExpert]

I don't know. The sensations I experience don't seem to be quite like what was described in the link. Maybe it is a form of akathisia, maybe not.

 

At least I hope it isn't, because I know withdrawal akathisia from neuroleptics can be basically permanent. The body may want to heal, but the receptors may be so downregulated(?) that it takes more than a lifetime to revert...

[SorrowExpert]

With the warm weather coming on, my mother's psychotic depression has returned and become so severe it looks like she's going to be hospitalized again. We were managing ok together, but now she spends all day in bed, and when she's not in bed she keeps repeating that "we're starving and we have no food" even though there is plenty of food in the fridge.

 

There's nobody left to help take care of me anymore. If my mom goes the only family I have left near me is my father who is nearly 88 years old. I'm too sick to live here alone... I'm going to be institutionalized.

[mammaP]

SE I'm sorry that your mother is so ill right now.   I noticed that you said your mother will 

be hospitalised, yet you fear that you will be institutionalised. One suggests care and 

the other suggests permanent incarceration in a facility. I really feel for you and wish I 

had the answers for you.  I think it is the drug/withdrawal that is causing those kind of

thoughts but you can train your brain not to take on those thoughts.  

 

When did you last take a drop in your taper and how much?

 

Are there any services you can use because of the agoraphobia?  To get shopping and

prescriptions to you?   

[Meimeiquest]

SE, I am so very sorry. I wonder if your social worker could help you look into home nursing support, if that is something you would want. There is a big push to try to keep people at home if that is what they would like. I'm sure this is extremely difficult on every level...a time when the internet is so inadequate.

[acetyl]

SE your story scares me A LOT as I can relate exactly to that type of bizarre and extremely intense pain you feel in your brain, like it's being twisted and torn. I'm in a similar boat to you with extreme anxiety and insomnia after abruptly stopping asenapine (like olanzapine but with even higher affinity for dopamine and serotonin receptors). For our sake I really, really hope this does improve and we are able to enjoy the remainder of our lives with this all as a distant memory one day.

[bubble]

SE your story scares me A LOT as I can relate exactly to that type of bizarre and extremely intense pain you feel in your brain, like it's being twisted and torn. I'm in a similar boat to you with extreme anxiety and insomnia after abruptly stopping asenapine (like olanzapine but with even higher affinity for dopamine and serotonin receptors). For our sake I really, really hope this does improve and we are able to enjoy the remainder of our lives with this all as a distant memory one day.

 

Acetyl, if you read more through SE's thread, you will see that your situations are very different. Actually, we don't even know how SE's taper of Zyprexa went and many other things so comparisons are not possible even if we were not so different as we are.

[SorrowExpert]

Yes, don't be scared. I'm a particularly difficult case - I think it's unlikely you will experience the kind of difficulty I have, though I know your journey has not been easy either. I think you're going to recover OK, and in time I hope there's that possibility for me as well.

 

Mom is taking medication again (Risperidone), and a physician is hopefully coming to see her to get soon to get her health needs met. My father and I are trying to see about getting assistance in the form of some kind of home health care, or at least help with the shopping. It's difficult going - I'm not really well enough to make all the necessary arrangements, and my father is elderly. It's not thay he doesn't care, but he mostly likes to stay at home and watch tv and talk with his friends. At his age there's just a huge inertia in getting him to move on things, and he was never good about being proactive even when he was younger. A part of it is also a great denial about how serious things are; he has never been good about accepting the fact that I've been ill.

 

As I mentioned I worry a lot about his age and his health - if something should happen to him my mom and I currently have no real support system here. We do have other family members, but they're distant from us geographically and we don't communication much. My father likes to say that if anything happens to him, that we will be taken care of, but these are just words; I don't really see the rest of the family doing much except moving to hospitalize us should anything happen. My aunt is quite well off, but has specifically stated that the only material assistance she would give is to arrange a nursing home situation for Mom.

 

In the end I guess if anything is to happen in regards to home health care the logistics of it will have to fall to me eventually, which is a tough thing to carry out when one feels pretty awful on even the best of days.

 

I am left in the unenviable position of ensuring my mom takes her medication, while I taper mine. Her psychotic behavior seems to be less unmanageable than it was, and we're having somewhat normal conversations again, but it's heartbreaking for me to have to do this. I rationalize it because if she didn't take it she would have ended up hospitalized anyway and she'd be forced to take the same drug there. The last time she was there for over 3 months, and they eventually gave her ECT. I was in a bad way soon after she came home from the hospital, and while it seemed the ECT had "treated" the depression for a while, it was also accompanied by severe memory loss. She didn't even remember I had been ill with agoraphobia for many years. But once she came home and started to remember and see how ill I was over the winter, she rapidly went downhill and developed severe depression again. I blame myself all the time for this. Maybe it would've been better if she'd never come back at all.

 

There's still the chance that she'll end up going back to the psych ward again. She's told me she doesn't want to, and I don't want her to either, but if at some point she becomes a danger to herself through not eating there will be no choice. They will probably move to ECT immediately the second time around. She was never the same after she had it, though of course I can't determine conclusively whether it was the effects of the procedure or her depression. She tells me that it destroyed her ability to cry, and that seems true - I haven't seen her shed a tear since she came home.

[bubble]

you mention you are tapering. How come you never tell as anything about it?

[SorrowExpert]

Hi bubble, you're right. I've updated my signature to show my current levels of medication. I'll try to do it from now on. I'm holding now for a while.

 

The summer is here, and with it ive had some strange symptoms. My pain is a little less, derealization is still there, but there has been a big increase in my anxiety. I find myself worrying constantly about things I can't control. What if my mom or dad dies? What if the air conditioning fails? And even though it's the summer, I worry a lot about the winter coming again. I worry that the same thing that happened to me last year will happen again, and that I'll be hospitalized definitely this time. I try to tell myself that these are just withdrawal symptoms, but its hard.

[Petunia]

Hi SE,

 

I find myself worrying constantly about things I can't control. What if my mom or dad dies? What if the air conditioning fails? And even though it's the summer, I worry a lot about the winter coming again.

 

This made me smile because I caught myself doing this exact same thing yesterday.  Its winter here in Australia and I had walked out of my warm room into a colder part of the house, I started thinking about what it would be like if there was no electricity or way to get warm, I felt my anxiety rising.  Then I remembered that eventually the weather will change and it will start to warm up again, then I remembered that its going to get very hot in summer, I remembered the months when I had just gone into acute withdrawal and the air conditioning did break and I couldn't get anyone out to fix it.  I remembered the following year when there were a lot of power outages.  But I also remembered that I had survived by staying in the moment and doing one thing after another. I decided to focus on that thought.

 

I know that you have agoraphobia and can't go out at the moment, but did you know that some therapists offer counseling via skype?  There are also a lot of good books which teach CBT, mindfulness and ACT therapies.  None of these will cure withdrawal, but it can help to manage symptoms and get some control over anxious thinking patterns.

 

Thank you for updating your signature.

 

Petu.

[NewMe]

Hey Sorrow

 

Wanted to let you know - I became severely agoraphobic a bit over a yr ago after a CT - binge on benzo and CT from that too. I was living minute to minute at times - clinging to my bedsheets and terrified.

 

Since then - I have moved, helping my elderly alcoholic mother and in denial 90 yr old dad.

 

I don't see my kids as divorce led to estrangement thanks to their dad. 

 

I lost a lot. My home. My business. Friends.

 

My sis died of cancer May 2013. 

 

I can tell you this - until I accepted that this IS my life, no matter how much I resisted it (which led to depersonalization), I was resigned to minute to minute capsules of ruminations. Part of it ws neurological and due to physiological wd - the other part was feeling helpless and less proactive.

 

I eventually got into al anon to help deal w my mom and her alcoholism. 

 

The program helped me to learn to trust and open up...taking responsibility for my life and to live it as best I can.

 

It's not always easy - but is preferable over extreme agoraphobia.

 

I too, am responsible for my moms meds and tapering her off benzos. Good times. LOL

 

Her extreme negativity and long term alcoholism pushed me into the crap of depression that led to being medicated and not having skills to grow on that should have been taught.

 

So here I am in my late late late a$$ 40s  and learning to live my life to the best of my ability instead of the terror it had become.

 

It matter not what tomorrow brings - worrying is not the same as actively planning with hope. I had to change that in me and it is a daily exercise for sure.

 

This from one of the worlds most terrified occupants.

 

In this slow progress of al anon - I learned to reparent and trust myself. To know that no matter where I go or what happens, there I am. Accepting it. Not fighting it. But looking at it and choosing paths instead of fearing them and allowing catastrophic thinking rule me as much. Mindfullness - meditation - all stuff I have to stay after. But its better.

 

A final straw put me in the mindset of packing and leaving - and living on the rd instead of w the situation here. My mom asked if there was anything she could do to change my mind - I said yes - get help.

 

SHe attended her first AA mtg at 85 - 

 

it helped me know I cannot predict what I want.

 

In that, I learn to trust more. 

 

Something an agoraphobic mindset would not previously allow.

 

I don't know what the future holds - but I know it can get better if you hang in there and try.

[SorrowExpert]

Hi again everyone. Well, I have a new problem. The other day I noticed that one of my wisdom teeth looks to have some areas of decay on it...there is a dentist who makes housecalls near me but I am terrified that it will need to be pulled. The anxiety is ruining my sleep...I don't know how I can survive the pain of dental work since I'm in so much pain already.

[Petunia]

Hi SE,

I'm in a similar situation.  Need to go to the dentist, but not up to it.  I lost a couple of fillings over a year ago, one of them was in a wisdom tooth. Since then that tooth has been crumbling away and its now loose.  Its about half its proper size now.  For a while it hurt a bit, especially when I was eating and I bit down on something hard with it, but now I can't feel a thing, maybe it died.  I'm hoping it will just fall out by itself.  For me, my teeth are the last of my problems, I will worry about getting them fixed up when I'm recovered.

 

You are in a better situation than me, if your teeth start causing more pain than your withdrawal, you can get a dentist out to your house, there is no such thing here, well not that I know of.

 

If there is some decay in a tooth, you can probably just get a filling.  Even if the dentist suggests getting it pulled, its your tooth, you can do what you like with it.

 

These days I don't trust the advice of anyone who makes money out of their treatments, services or products.

 

Are you still getting severe DP/DR?  It this what causes the agoraphobia?

 

Petu.

[SorrowExpert]

I don't even think I'm up to having a filling...a dentist who comes in and sees me in my current state wouldn't work on me anyway. But I have so much anxiety about my teeth...if an infection starts I'm in a lot of trouble. I'm in so much pain already that I won't survive the pain of a tooth extraction.

 

I've been getting sicker, not better, and the DP/DR is as bad as ever with no sign of improvement. My mom is terribly ill too with psychotic depression. I don't know what's going to happen. Maybe I will die or be hospitalized again, but I don't think going on the way things are now is possible for much longer. Sleeping normally has become impossible. I wish I could keep going but I don't think I have the fight in me anymore.

[alex]

. I wish I could keep going but I don't think I have the fight in me anymore.

 

SE,we ALL have felt like this sometimes.If you go to my threads, you'll know.

IT IS part of the overwhelming feelings of dread and dispair created by chemical chaos.Is not real.

Hang in there, it will pass.

[alex]

 

. I wish I could keep going but I don't think I have the fight in me anymore.

 

SE,we ALL have felt like this sometimes.If you go to my threads, you'll know.

IT IS part of the overwhelming feelings of dread and dispair created by chemical chaos.Is not real.

Hang in there, it will pass.

Oh, and regarding the dentist,my advice is that you need to overcome your fear and DO what you need  to do.

I had a dentist problem just a few weeks ago, and I went, and everything came out just fine.

I felt good aftewards.

 

[SorrowExpert]

Thanks for the kind words, alex. In any event, I have a nurse practitioner coming out to see me next week and check out my overall health. As far as the dentist goes I'm not sure what to - there is one dentist in the area that makes housecalls that I spoke to, but I didn't get a good vibe from him. I don't think I am well enough to have major work done, but I constantly worry about further problems. Maybe the NP will have some thoughts...I think we're also going to contact my former dentist who is a family friend and see if he has any ideas.

[SorrowExpert]

I still don't know what to do - I need dental care but I don't know how to get it...I feel just too ill to travel and I've been striking out totally on finding any in home care options. If I were off the medication totally I could probably go to the hosptial to get treatment, but I'm not. If I go as I am now, they wont let me taper, they'll force drug me. My father has told me he's given up on me.

 

I wish I could think of a solution, but I can't.

[SorrowExpert]

It's just hard living with this kind of health uncertainty. If I had a heart attack or got appendicitis I'd be in big trouble too. The dental thing is just the most obvious problem. Agoraphobia is really cruel, it'd be cruel enough by itself without pain on top of it.

[SorrowExpert]

What happens to people who have a serious health problem requiring hospitalization during their taper anyway? I guess they're just forced back onto the full dose of medication, or die? There must be a better answer.

[SorrowExpert]

Well, I don't know if anyone is reading these posts anymore. I hope I haven't alienated my friends here by using this thread as a sort of dumping ground for all these problems lately. I know there are probably no easy answers, but I thank you for all your words of encouragement. I'm just kind of living day to day right now, in a holding pattern. I think I'll stop posting for a while and will update if and when anything changes.