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

[Meimeiquest]

I don't post because I don't have answers. Whole cloves pressed around a tooth can help toothache temporarily, and you could look up oil-pulling. I am sorry you can't get past these awful symptoms!

[SorrowExpert]

Thanks for the reply, Meimei. I wish I were finished with my taper - I'm on such a small dose now.

[Petunia]

Hi SE,

I was actually thinking about you this morning, soon after I woke up.  I recently read something about agoraphobia related to drug withdrawal.  Someone was describing how its different from 'normal' agoraphobia, for her, because its caused by hyper-sensitivity to sound, light, movement, changes in temperature and the inability to control the environment as easily when outside of the protected environment of the home.  I usually start to feel a bit better as the day progresses, my sensitivity decreases and I can sometimes go out from mid-afternoon onwards.  When I read that, I realized that's exactly what it is for me.  I woke up this morning thinking about what I had read and wondered if your agoraphobia was caused by the same kind of thing. I also have DP/DR and that adds to the difficulties with going out, it feels so frightening and unpleasant to be out in the world feeling like that, like being on some kind of bad drug trip.  But for me DP/DR doesn't stop me from going out, I can still do it, as unpleasant as it is.  But the hyper-sensitivity keeps me in the low light, quiet, low activity environment of my room where I can have a reasonable amount of control over the normal stimulus of everyday life.  But I have a problem neighbor and often have to use ear plugs during the day as well as at night.  Like right now, he's out there doing something noisy, he has a workshop and fixes cars and trucks from home.

 

Do you read other introduction threads?  Many of us have similar concerns about getting very sick or having an accident while tapering or being in withdrawal, and having to face hospitalization or surgery.  Some members have had that actually happen, and have survived.  I do my best not to think about it because I'm so very sensitive to almost everything, all I can take is the occasional aspirin, I can't imagine what the drugs and environment of a hospital or any kind of surgical procedure would do to me now.  I never use to be like this, only since withdrawal hit.  

 

Sometimes, life gets hard, impossible even, and there are no answers, just continued living, from moment to moment.  All we can do during these times is be with each other.  Its difficult to know how to just be with someone over the internet, when there is very little to do or say.

 

Like you, I live day to day and can't make plans. My belief in eventual recovery keeps me going. I wish I had more to offer, I'm sorry life has become so difficult.

 

Petu.

[areyouthere]

Hi SE.

 

You are not alone. We are here for you. I wish I had an answer as well. How did the visit from the NP go?

 

RU

[SorrowExpert]

I'm here. Was hospitalized again, unfortunately. Survived, like Petu said others did. Ended up on 25 mg Seroquel, nothing else. Stuff happened that I don't know if I should go into here. Amazingly, the agoraphobia is much improved. I went into a fast food restaurant for the first time in 4 years yesterday. Miracle? Trick? Am I getting better? Is everything going to collapse? Don't know anymore. Still being on medication makes me feel as though I've failed, and I don't know if this puts me in a better position than with Zyprexa. But I was in very bad shape over the summer, and I really want to be alive to be with my parents for the holidays.

 

Just trying to live day to day now. Thank you for all your support, always.

[Petunia]

HI SE,

Thank you for updating, I've often wondered how you are doing.  I'm so glad to hear you are feeling better and able to go out now.    Being on 25mg of Seroquel is not failure, that's a low dose and you are doing what you need to do to get well.  One day, if and when the time is right you can start a slow careful taper from it, but for now, just concentrate on being well..... and enjoying the holidays.

[Meimeiquest]

SE. This is the best news I have heard in a long time! As you know all too well, something happened to you neurologically with your first illness. If anything can help, what a wonderful thing! If it's just a bit of Seroquel, all the better. There are many, many people taking a bit of Seroquel at bedtime who function normally all day long. I'm not saying that it is necessarily great, but for you it is fabulous! Enjoy THANKSGIVING with your family!

[SorrowExpert]

I realized before I was hospitalized what my first illness was - I did it all to myself, all of it. It's part of why I became suicidal and ended up hospitalized.

 

Now my mom is in the hospital, and my dad is elderly. I've now had the chance to do the research and realize that even 25 mg of Seroquel is a dose I may never be able to come off of - I don't think I can do the years of insomnia thing now that so much has changed. Reading parts of http://beyondmeds.com again and feeling so very down. But I couldn't go on like things were either.

 

A part of me now wishes I never came home at all. But I promised myself that my parents would have a son this holiday. But what good is this empty shell?

 

I intend to keep that promise, at least. I'll try to concentrate on being as well (as I can right now.)

[Meimeiquest]

SE, for me, if I could be okay on 25mg of Seroquel, I would just take it (obviously many would disagree). You at least need to really stabilize and get functional if it is giving you benefit. Now 300mg would be a different story. I obviously don't know what you sense caused your illness, but I hope you find some relief in understanding it, and that you can forgive yourself and move forward in the most productive, joyful way possible.

[SorrowExpert]

Thank you for putting things in perspective, Meimei. The agoraphobia needed to be broken or I would not have survived much longer, and somehow it is now broken. The last time I was hospitalized it only became worse, even on huge doses of medication. Perhaps I earned some small miracle, I don't know. Time will tell I guess.

[Meimeiquest]

How is your pain and insomnia?

[SorrowExpert]

Right now the pain seems about 50-60% better than it was over the summer (it was really bad.) I get some bad headaches in the afternoon, but they're manageable. I'm sleeping about 6-7 hours a night right now.

 

I still feel pretty off otherwise though, of course. A chop and change is hard on anyone, and I'd been on Zyprexa for 5 years. Different receptor affinities and all...I guess Seroquel doesn't have a huge effect on 5ht2a or D2 at this dose, maybe that's a good thing in the long run. I have noticed some involuntary mouth movements and tingling in my legs that I didn't have before, but it's not bad...mild tardive dyskinesia maybe? For the first week there I itched a lot.

 

I've also been getting waves of bad anxiety and ringing in the ears. I don't know how much effect Seroquel has on GABA at this dose, but it seems less than what the Zyprexa was doing, maybe. Even so, the agoraphobia seems to have evaporated for the time being.

 

I'm still surprised I survived and that anything "good" happened at all.

[Meimeiquest]

A second chance enjoy! And note....you can endure more than you thought you could. You have been through a lot.

[SorrowExpert]

Got my teeth (mostly) fixed today! The agoraphobia has been so much better lately that I had no problem getting a ride to a good dentist a few towns over. Farther away from home than I had been in several years...everything at the dentist's office went really smoothly. A few cavities that needed filling were taken care of; an extraction on that nasty widsdom tooth will be done later this month. Currently at 9 mg Seroquel and seem to be doing OK.

[Meimeiquest]

That might be my Christmas present!

 

You know, I had a terrible time on a beta-blocker until I was switched to another drug in the class, then easy-peasy. Maybe a switch was just what you needed. Whatever happened, I am so glad!

 

Merry Christmas!

[LoveandLight]

I'm absolutely delighted to read that you're feeling better. Best wishes.

[ladybug]

That is great news!

[Petunia]

This is such good news, thank you for coming back to share your progress.  I'm happy you are feeling better and have been able to get your dental work done.  Also getting down to 9mg, you are doing so well, I agree with Meimei, its a Christmas present for me too.

 

My agoraphobia is going away too, I've been able to drive to my sister's house again, she lives about 20 minutes away.  I'm hoping that some time next year I will be recovered enough to go see my dentist again.

[LoveandLight]

How are you?

[Brain]

Hey SorrowExpert,

Sounds like you're becoming more stable lately! I can't imagine a better outcome after being hospitalized.

 

I think you're at a great place right now. From the sounds of it your previous taper attempt just wasn't sustainable---the withdrawal effects were intolerable, and ultimately you had to abandon the taper (more or less --- switching to a different med). I think tapers are most likely to be successful when they proceed slowly enough that the withdrawal effects are minimal to nonexistent. If, after spending a while in stability land, you are feeling like starting to taper off the seroquel, I'd suggest going very slowly so that you don't provoke the nasty DP/DR and other withdrawal problems you were getting before.

 

I think something that would help others on this site to help you would be if you could provide a more detailed history of your meds and doses and withdrawal symptoms in your signature. Then we can better see where you've been and what has (and hasn't) worked for you.

 

It may be that psychotic experiences ("extreme states", as some people call it) are going to come up for you even if you taper very slowly. In that case I'd suggest learning about alternative, non-drug ways of dealing with such experiences. Hearing Voices Network, the Soteria Project, and the Finnish Open Dialogue approach are examples of this. You can find a lot of outside-the-mainstream perspectives from Madness Radio, the host of which is himself recovered after having had psychotic experiences. I highly recommend it. There's also Icarus Project and I'm sure a million other alternative perspectives on "schizophrenia".

 

I think it's almost certainly the case that you can make life work without the drugs, but it will likely take a lot of learning and reframing of your experiences in new ways that make sense.

 

I hope you are doing well!

[SorrowExpert]

Hi, just checking in quickly. I wanted to thank all of you for your holiday wishes! I'm still doing pretty well - I'm starting to go grocery shopping again and doing some driving. I still have several appointments coming up, including getting (more) dental work done and seeing a primary care doctor for the first time in a long while.

 

I have good days and bad; I'm by no means healed and still suffer from pain and fatigue, etc...but I'm doing much better than I have been in years and I'm hoping I'm now on the road to some lasting improvement. My parents are getting older and starting to have more difficulty, and I don't know that I will be able to be well enough to give them the help they need. This worries me a lot, not only for their future but for mine, as I don't have a great deal of family or friends.

 

I've been through so much I don't know if I'll ever be completely well, but I intend to keep working on it.

 

Thanks for the suggestion Brain, I will try to update my history for the reasons you state, though it's really a big mess.

[ladybug]

Amazing update, SE! You probably don't know me as I mostly posted on PP, but I have kept up with your story here for a while and to hear this change in your voice from one of despair to one of hope is so great. And you're getting out of the house too! I am really, really happy for you.

[Meimeiquest]

You know I am so happy! I'm sure your progress is a great comfort to your parents as well. How is your mother doing? Take it all one day at a time...one thing I have learned again from your story, and mine, is that no one on earth knows the future. We have to just do the next right thing.

[LoveandLight]

So happy for you..totally delighted

[Altostrata]

Very happy to hear you're doing better. I added our cheerful "here comes the sun" symbol

 

☼

 

to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

[SorrowExpert]

Hello everyone.  I haven't checked in in quite a while, and I thought I'd let my friends here know how I am doing.  I'm medication free, and I am doing better than I have in years!  For the people out there who are still suffering, I wanted to let you know that I have been there, and my situation was probably the worst of the worst if you read my main thread here.  I thought I was damaged for life.  But I don't think I am anymore.  

 

For anyone who thinks that it will never end or they can't ever recover, or reads online somewhere from some supposed "expert" that healing can't happen - it's bullsh*t.  Keep fighting.

[Altostrata]

Thank you, SorrowExpert.

 

I want everyone to note the title of this Intro topic. A little less than 2 years ago, SorrowExpert was sure he was doomed. He believed this intensely and for a long time, his belief was unshakable.

 

Can you tell us a little more about how healing went for you, SE?

 

Please update your signature.

[ladybug]

Amazing!!!! I have been following your story for years and it couldn't make me happier to read this. Please tell us more when you have the time.

[mammaP]

SE I am so, so happy to see that you are doing so well, it has made my day.  

 

I want to rush over and give you a Mamma hug but can't so will send it via cyberspace instead 

[Meimeiquest]

So happy!!!

[LoveandLight]

Amazing..enjoy your new life and thank you for coming back and letting us know. Wishing you every happiness and a beautiful life.

[SorrowExpert]

Hi again everyone.  Once again, it's been a while since I've checked in - and I don't want to be one of those folks who once they are doing better disappears forever.

 

It's been about 4 months since I've been totally off all medicaiton, and in general things are going really well.  I'd consider myself maybe 70% healed at this point. My major issues right now are some lingering weird neurological pain sometimes, cognitive problems, a bit of sleep difficulty on occasion, and fatigue.  Aside from the fatigue, it's all pretty mild and there's no doubt in my mind that much of it will continue to improve with time.  I was through an awful lot for many years, and combined with my age I just get tired very quickly it seems.  It's not that horrible I guess - I nap when I need to for about 30 minutes in the late afternoon and wake up feeling refreshed. I'm unable to touch any alcohol at all without having a major setback.  That's probably a good thing.

 

I've been able to start doing some work again part time, mostly tech type stuff that I'm able to do from home.  For the first time in many years, I've been able to really enjoy music like I used to, and have been getting back into recording myself playing guitar in a big way.  I forgot how much I missed it.

 

The agoraphobia and anxiety that kept me trapped in my home for so many years has essentially evaporated like mist.  I own a car now, and I'm able to drive for many miles every day and go to stores, and do my own shopping and so on.  So far I've been over 20 miles away from home and I'm working on more.  In a way it's sort of like being a kid again - most people wouldn't find going to Wal-Mart or the supermarket particularly exciting, but after being a prisoner for so long, to me just simple things like that are great fun.  Every day is sort of an adventure.  I sometimes get a little anxious when I'm in a large store, or stuck in traffic, but that's about it.

 

When I was in the hospital last fall, they rapidly discontinued the little bit of Zyprexa I had been trying to wean myself off of and replaced it with Seroquel.  It was unpleasant, but I think it was finally the change I needed because after so many years on the original drug I didn't think I would have been able to go all the way myself.  I was there for about a month, and after about two weeks I could tell that things were changing for the better.  I had some concern after I came home that I wouldn't be able to discontinue it as it was such a powerful sleep aid, but I was fortunate, I just cut down a little bit at a time over a few months and didn't really notice any terrible effects during that time or after the total discontinuation.  I'll try to update my signature.

 

As you can imagine, my family is overjoyed to have me back.  My mother suffers from the probable early stages of dementia and psychotic depression, but she recently has been having electroconvulsive therapy.  Unfortunately, it seems to be the only thing that works and breaks the cycle for a while and "brings her back".  It's terrible, but it's absolutely that or endless psychosis.  It's always a risk, but they really did try everything else.   For now, she seems to be doing somewhat better, cooking and shopping for herself, and I'm enjoying her company while I can.  While it lasts.

 

Sometimes I can't believe I survived what I went through.  I don't know how I survived, really, and I know I'll always have trouble explaining it to people.  I don't like to lie by omission, but it seems whenever I meet new people that's what I have to do lately.  It feels bad, but I don't really see any way around it for the time being.

 

I'm 36, and I've lost so very much.  But I'm starting to gain some of it back.  The rest of my life is waiting - I think I'm ready.

[Altostrata]

SorrowExpert, that is such good news. You're working and getting out -- haven't you come a long way!

 

Are you taking Seroquel now? How much was swapped for how much Zyprexa? Are you going to taper it eventually?

 

Please update your signature with the news.

 

How about we change the title of your topic to "SorrowExpert -- thought I was damaged for life, but I'm not."

[SorrowExpert]

That title sounds fine, AltoStrata!

 

No, no psychiatric medication of any kind at the moment or for the last four months.  The only prescription medicaitons I take at this time are low dose doxycycline (antibiotic) for mild rosacea, and a beta blocker for high blood pressure.  I've been doing more exercise and have lost about 15 pounds since coming off the drugs, and have gained some better muscle mass.   My PCP is hoping we can discontinue the beta blocker soon as well if my pressure keeps coming back normal on this low dose; he's not big into people taking pills they don't need.  

 

Seroquel taper is long done with; in the hospital they swapped 50 mg for the tiny amount of Zyprexa I was still taking.  I was afraid it might be as difficult to taper as a benzo, but for me that low dose really was no problem at all.  I don't completely understand the reason for the sudden improvement, the brain is too complicated, but I'm not complaining...

[Meimeiquest]

You've made my day once again!

[Altostrata]

Title cheerfully updated.

 

SorrowE, did they give you any explanation for the switch to Seroquel? How was the switch accomplished?

 

Did you get any odd symptoms after the switch? How long did it take for the symptoms to settle down?

 

How long were you on Seroquel and how did you go off?