Dime

I am not a psychiatrist but I have gotten quite knowledgeable on how this disease has ravaged my body. First off it is very important for everyone to understand that I am speaking about my personal experiences only and others with the same diagnosis may hopefully has a much brighter future. Please see your pdoc a regular basis and be as honest as you can. They definitely help people with this disorder.

I got sober 6.5 yrs. ago. It was an absolute delight to stop and tough but nothing buy very easy for me as compared to by friends. Get a sponsor, work the steps and AA's does indeed work!! I had no trouble keeping away from the drink.
However I did have tremendous trouble though making it through the day and couldn’t keep friends. It’s start out great but sooner or later my mood changes for reasons I am at a complete loss to explain and the majority of the time I sink into deep major depression. I think everyone hates me before I have even had a word with them since I hate myself severally when I am depressed. Why would anyone else like me? I am fully aware of what’s going on but am powerless to stop it. Same as manic episodes. At this point of extreme depression I disappear for months at a time hoping when the major depression passes I might still have a friend or two left. If I return manic my good mood and attitude is contagious to those around me and I make friends like crazy. It's the only time I have a chance to feel good at all, but it is usually short lived and I drop back in deep depression and the whole cycle starts all over.

I see my pdoc on a regular basis, he always understands exactly what's going on but has no answers or help of any kind as I believe both the pdoc and I believe that my disease is organic and cure remission only happens when my brain initiate’s it. I suspect bipolar may have been the original cause of my alcoholism (no in total remission) and I used booze to stop the symptoms, which only makes things much worse. Please talk and believe your pdoc on meds. Virtually every one I took seemed to accelerate the disease. Quetiapine has been by far the worse. My thought processes and memory and never recovered to pre-quetiapine days.

My ups and downs are on in a steady regression and I have little hope of arresting the disease no chances of a cure. The only one who can help would be Gods hand.

I have been ostracized by 3 of my 4 children thanks to relatives that explained my biplor 1 behavior in a similar fashion to the mental illness on "One Flew Over The Cockoo's Nest).

If this doesn't change quickly I will be forced to dispose of all my wordly posessions and live in a card board box and beg for food. I feel there is nothing left to try and improve.

spryte

I really feel for you Dime. Thank you for sharing that.

After I got sober, I went psychotic and am currently taking an SSRI. Looking back over the history of my life, I think it is certain that I have particular tendencies, although it is hard to pin down an actual diagnosis. I am on the depressive side of things, and have definite inclinations towards paranoia. Like, real paranoia.

My doctor does not have all the answers, because science is just not there yet. I think the approach is to monitor things closely, experiment with medication, and make sure I am doing the self-care things that bring me relief.

I'm not sure this is a bi-polar cycle for me, but it is a cycle: I am engaged in life, and active, and everything seems to fall in my lap...and then I withdraw, and isolate, and it all falls away. Then I engage again, build it up again....and withdraw.

Mental illness is a real struggle, because as I understand it, there is no cure. Not for particular conditions. There is just treatment.

We are further ahead with treatment now than we were 20 years ago. That is for sure. And this I know: staying sober is absolutely crucial.

I wish you the best, and I feel for you in your situation.

Dime

One thing for certain, Bipolar Disorder 1 & 2 are difficult to diagnosis accurately. Pdocs thought I was depressed for years before I went to a new pdoc and he knew right away I was BP1. Of course all symptoms were present at the time so it was obvious to him.

Don't try to diagnosis this one! People that know I am BP1 ask me all the time about a child or loved one they think may be BP and "What do I think". It's insane most of them are so far off base they could really cause harm to someone.

Good luck to you Spryte!

Live

Dime, I was also misdiagnosed as depression and anxiety for years before the drs came to bipolar I and even longer before I considered it and believed it. It's so easy for this to happen because we tend to present when depressed not when we are feeling good or great. This is extremely common and the stats show that it goes undiagnosed for an avg of 8 years. wow, huh!?
And my manic swings were mild so that I just thought that the meds were finally working and I felt good like normal people. It was later in life that they became a serious problem and I tend to go mixed which is terrifying. I also have disabling anxiety.

I am not sure I believe in any complete remission between episodes. I also know the prognosis is disheartening at best and none of my pdrs or therapists have tried to soften that. It would be dishonest. It is about adapting and making the most of what is possible to me now. And to be blunt, to keep me out of crisis as a primary goal. They were more about helping me with acceptance.

Does your pdr spend time with you or is it just the in and out and prescriptions? I had a great pdr who spent an hour with me but had to close his private practice due to a conflict of interest, so now I have added a therapist.

The medication merry-go-round has to be one of the most discouraging things but mine finally help me tho any progress is extremely slow and gradual but I can look back 2 years and see that I am much better off.
I have also found that any given drug effects me differently at different times.

Like you, I swore adamantly that quietepine was EVIL. I had been put on it for short times 3 different times. I even said I was allergic to it tho technically speaking, I am not.
Then my pdr and I were negotiating sleep meds which I am resistant to almost all or have such undesirable side effects I will not take them (the hypnotics). We were stymied and between a rock and a hard place, I finally agreed to 50mgs of quietepine. this time it caused me no problems.
Then the new pdr wanted me to try it at a high dosage as a mood stabilizer. By then I was so disillusioned with depakote, I said okay, I will try but I was completely skeptical. I would prove him wrong! lol
Unbelievably this time, it worked far better than anything before. go figure!
Not only do we all respond to different meds differently..but we also respond to them differently at different times. What a trip, huh? So that means I have to be willing to reconsider drugs I have tried and rejected before. Admitedly, I do so very reluctantly.

I don't think I will ever be the person I was before this wrecked my life, I miss that person and would give anything to get it back, but as you said ..prognosis, that is not in the cards.

Not only is there always some degree of residual depression, tho managable now, but the meds...all 5 of them have fatigue as a side effect.

My family certainly did not understand I was ill. Finally following a serious crisis, I emailed them all sorts of info, including things not to say to me and what was helpful. and I held strong to those boundaries. A couple just thought I was being manipulative, others came around and have changed and are supportive even if they don't understand.

It took me between 5 & 6 years to get over the belief that things would turn the corner in 2 or 3 months and I could go back to work. I am now collecting disability. Not what I would choose but it became the only practical and necessary course of action.

I do harbor a fantasy of substituting lamictal for the quietipine because it is known to better address the depression, is activating and does not cause the catastrophic weight gain. But I am not willing to gamble away my fragile balance I have finally achieved after so much bad experience with the bipolar drugs.
I cannot say that it does not remain a daily struggle, simply that it has diminished a very great deal. I am starting to pick up pieces of my life slowly.

One time one of my family members participated in a conference call with one of my pdr sessions. He advised her to read "An Unquiet Mind" by Kay Redfield Jamison. I have read it several times and my pdr & I have discussed that she is the exception to the rule. It's very uncommon for someone with bipolar to function at her level. However she IS an excellent writer and has bravely written about her illness. (I am pretty sure this family member never bothered to read it as suggested).

I now have goals even tho they are things others do regularly and without thought and intense effort. Over time I hope to normalize my life, one baby step at a time, within my limitations. These small successes are enormously gratifying to me.

I have become an introvert so socializing isn't on my agenda. I have a mate who is kind and patient with me and very good to me and that is enough for me. I keep up internet friends as I know I am not a good friend because I would and will wind up disappearing on them and they do not understand my life/illness. At times I have a very low tolerance for other people. Not because I do not like them but there is a barrier there and I am sensitive to over-stimulation and expectations.
I haven't tried NAMI.

I don't think I could parse out my cognitive decline between what is the illness and what is the side effects of the drugs. I believe it is both. And aging, as well.

Most things are multi-factored and often over determined.

Not sure why I wrote a novel here but wanted to share with you as someone who faces similar circumstances.

Dime

Live,
Thank you so much for all of that. So much of what you wrote parallels my experiences I somehow feel less alone. There is almost no one I can talk to about BP. The stigma and misunderstanding are so prevalent I won't risk telling others. My original sponsor who is incredible as a sponsor has said on numerous occasions of his disbelief of the legitimacy of the illness. I was sober for quite a while before I found out I was BP. Needless to say it has changed our relationship because I won't risk a BP discussion with him and I do not want to be dishonest with him.

I have been on 400 mg nightly and it certainly helps you sleep but I think it is having a serious impact on mental function. I tossed a prescription that developed a strong acidic odor forgetting the cost to replace. Well the pdoc was more than glad to write me a 30 day script to replace the acidic pills but I found out that a 30 Rx was going to cost me over $400 which I flat out don't have. Doing everything I shouldn't be doing I took my remaining pills cut them in half and have been taking 200 mg daily for over a week now with about 2 more weeks till I get my next 90 day Rx which is actually fairly cheap with my insurance.

I am discovering some amazing things. For starters the 400 mg dosage does not clear my system by morning and it appears the reason I am so spaced out till after noon every day is over dosage. My mind is functioning so much better right now I really want to stick with the lower dosage. When I see my pdoc I will tell him all of this. I am 99% sure he will be very angry with me but I am just about certain he will change my dosage to 200 mg daily.

I would appreciate it if I don't have a ton of people telling me I shouldn't be doing this. I am very aware of the risks and will take action if I start to notice any undesirable effects, especially mania. It's my life and I am sticking with my decision.

Live

Thank you, I am glad to have you to chat with too.

Do you really think your pdr will be angry with you? In my experience they usually just take on board whatever I tell them and we go from there.

If I can express what I have done or want to do rationally, they work with me.
If you feel better on 200mg, well that is the goal, isn't it?

I have made changes that my pdr thought might be risky, but I promise to call if I start to go mixed..immediately.

I imagine he will have some concern as you have already identified that mania may occur...but you are very aware of it and would self-report.

I can't see anything wrong with that picture.

The only basis they have for prescribing is according to what we tell them anyway, we are the experts on how we feel and how we are functioning...barring a crisis episode. And I know when to head to the hospital too, if needed.

If, and I doubt it from what you say, you need to raise the dosage again, it isn't like antidepressants that take a couple months to take effect. Nor am I aware of any worries about withdrawals with quietipine per se.

I once halved mine but it became immediately apparent that I was decompensating and destabilizing and went right back to the higher dosage.
I thought it was making me sick to my stomach in my sleep but have since found out I have GERD and a hiatal hernia to blame for that.

I take 600mg and I am not aware of it making me spacy in the morning. I like my mornings. Depakote made me dull and spacy 24/7. I have a scrip for trazadone because sometimes I still have trouble sleeping thro the night but unless I take it way early in the evening, it's guaranteed to make me tired and spaced out feeling for at least half the day, if not longer. Generally I skip it unless I am having problems waking at night again...and the dosage is at my discretion, anywhere from 50-200mg. I don't bother discussing this with my pdr, it isn't broke so why fix it? I have it for when I need it. maybe I will get my act together and learn to take it early since I am interested in it's antidepressant properties.

We are the ones who live with this, who negotiate the side effects, who knows what is tolerable and what is not. And we all are individual and respond individually. So it is their job to hear us, isn't it?

My prior pdr was younger and far more liberal, a really special man, sometimes I miss him.
But the one I have now while he is more conservative does spend 1/2 an hour with me, listens to me and respects what I tell him. He genuinely cares and wants me to feel well, and that is what it is about.

You are not going to decide that because you feel well at 200mg that you no longer need your meds are you? I didn't think so.

And that is the most common problem drs have in treating bipolars.

We are med compliant and it is nearly a given that we have to tinker with the meds and dosages to find our best cocktail. Drs and patients are partners in that process.

So I will reinforce what you ended with. My meds are between me and my pdr and no one else. He's the one with the medical degree.

That doesn't mean I will not listen to others experience.

I will be eager to hear how this works out for you.

thanks,
T

Live

Dime,
I went back and re-read this thread to know you better instead of just running my mouth as I am prone to do.

Your first post, written just a week and 1/2 ago screams serious depression. Intolerable depression. Has that lifted?
If so, what do you attribute that to?

I have never had a depression lift that quickly, mine has always been so slow it's almost indiscernable until one day I realize I don't feel so badly. I am talking months.

I come from a belief that pretty much everybody has it together better than I do, so it didn't register as it should that you may be so deeply depressed.

I am hoping you were just having a really bad day!

Dime

Live,
Once again thank you for taking the time to help me out. You seem to have a higher level of knowledge than myself and I really appreciate your insight.

You're probably right about my pdr not getting angry and working with me. I wish he would take more time with me as he spends at the most 15 minutes and is fairly focused on medications and whether they should be changed. I get nervous when I am talking to him and have a lot of difficulty recalling details that are pertinent. A couple of months ago I got very upset when the UPS driver didn't deliver my meds scheduled to be delivered on a Friday. I called up UPS and ripped them and demanded they return and deliver them that day. They wouldn't do it and later offered to let me pick them up on Saturday. As I talked to the UPS dispatcher I could feel my body and mind going full blown manic in just a matter of minutes with all the classic symptoms. I couldn't stop it or calm myself initially but got it under control by going into a dark room listening to relaxing music and meditating. I had to be real quiet for a few days but got it under control. This time I documented everything and took it to my pdr. He only listened to about 30 secs, said I was manic and made a med change and that was it.

I am usually depressed and have very few days of being asymptomatic. You are right about my depression, it is severe and has been for a long time. I'm not sure why but it usually starts from negative thoughts about everything and difficulty in enjoying myself or finding happiness in just about anything.

I will get through this but just wish it would lighten up.

Thanks!

Live

Dime,

Unfortunately that is the norm with pdrs, I just happened to FINALLY luck out and get a couple of truly special ones over the last 3 years or so. My pdr now is an elderly gentleman and I dread the day I will have to find another. I doubt I will be so lucky again. I used to have one that spent like 8 minutes with me, but at least she did still discuss meds together with me but I wasn't being treated for bipolar yet. I rejected that, just couldn't see it.

Have you thought of seeing a therapist? I really rely on that. I can only afford to go once a month but would go twice if I could. It may take some trial interviews to find one that you really click with but I sure would recommend it. Mine is one very sharp lady with a great sense of humor and very well educated and insightful. I take my mate in with me.

Are you also taking an antidepressant? How long have you been so depressed? Can you relate it to an event such as a loss or extreme stress? Do you see any improvement over time? Or are you treading water or slipping back?

It took me a very long time to pull out of my latest depression and I still have residual depression but I don't feel particularly badly most of the time, just my functioning is returning very very slowly. I don't yet enjoy all or many of the things I used to. It's just that I am free of the mental torture of feeling so very badly.

Please don't think I have it all together. I don't by any means. About 3 years ago I was so depressed all I did was sit in a chair like a zombie from morning until night. I did not bathe, dress, I did not keep house. I sat there, enduring. That is all. Whew, I don't have it in me to go thro that again!
I am still recovering in baby steps. My good pdr likened it to climbing Mt Everest, and slipping back at times. That was a scary analogy. On the one hand he validated how difficult my struggle was and on the other hand it was disheartening and frightening.
My initial goal was to stay out of the hospital. It was my only goal. We have managed that. From there it has been about feeling better. I do and I think that is slowly and steadily getting better all of the time. The quietipine turned out to be a real boost to my antidepressant. My therapist added in avoiding stress. Next has come good sleep hygiene. I am getting pretty good at that, tho I did screw up last night and stay up too late and predictably I did not feel well at all when I first got up today. I am kind and gentle to myself, so I went back to bed. I don't like to mess that up because I usually like my mornings to myself. Neither my dr or my therapist give 2 flips about my housekeeping but I identify it as majorly contributing to my depression. I put myself on the Flylady program and for the last 30 days have kept my kitchen sinks cleaned out and shiny. I have a caseworker that visits me in my home once a month and we put that on my treatment goals to work on this. Now that I have achieved the sinks goal, 3 days ago I added making my bed to the program. I usually spend a very few short minutes picking up one or more times a day and it is adding up.
I had an unusual occurrence this week, I actually felt like cleaning for the first time in recent memory and I scrubbed the bathroom. These are things that I can see and give me some sense of achievement. Change is hard even when you want it. But it does please me to see these things done. It also gets me moving. I do like to read again...a lot! This is getting me out of the house to go to Goodwill and purchase books as that is something my mate can't shop for for me. I like to eat out occassionally. Reading keeps me entertained and out of my head. I couldn't even read for awhile.
My therapist has given me lots of suggestions I haven't been able to implement yet. One that she stresses is that everyone needs to be outside in the sun for a minimum of 10 minutes a day. I used to like to garden but don't like being out where I live now and can't have a garden. Healthy diet, exercise and supplements are her three other biggies. (and of course, the appropriate meds)

This is far and above the very worst depression I have had in my life. It seems to me that as I age, the more I cycle the worse the episodes have become and it is the depression that gets me. and hard! the mania came late in life and is easy to control with meds. It's something called kindling....the more you cycle the worse it gets.

I also have anxiety and PTSD. I take meds for the anxiety and the PTSD is pretty much latent. It takes something very stressful or frightening to set it off and as with your mania, I can handle it by taking a few days of nurturing myself. I no longer have panic attacks, altho I handle that by avoidance. I avoid the types of things that panic me but that has improved too and again, it's because we have me on a good med cocktail.

I have had many depressions that I was able to mask better. I could still work and socialize but spent my private time at home in bed a lot feeling pretty badly. But the last three have scared me more and more. This last one was the mother of them all!

But I still want to make the point that as messed up as I sound, I really don't feel too badly emotionally and psychologically. Meds, therapy and education. I don't think there is any chance of improvement without the right meds.
I have my sense of humor back. I am more alert. I have hope and trust that I will continue to get better.

I would suggest that at your next appmt, you quickly explain that you feel better with the 200mg but that you are still severely depressed. That needs addressed.

Because as sad as I sound, to me feeling really depressed is much worse.

What I am doing now is kind of like physical rehabilitation. Learning to live again. One step at a time.

And, again, I do really strongly suggest you find a professional to talk to regularly. I think it is priceless. And studies show that bipolar is best treated with both medications and therapy in conjunction.

When I finally (had no choice, bad mixed episode lasting 6 freaking months) accepted that I had this bipolar I, I read everything about it and all the biographies and autobiographies I could get my hands on, even including the medical textbook.

I could not afford to be an uninformed consumer in my care and treatment anymore.
I had to start fighting for myself even if it was pulling on sweats and just keeping my appmts at first. and talking openly and honestly.
I really look forward to seeing my therapist now and always leave feeling good.

Yeah, I am hopeful now.

Thanks for the chat, I find it helpful.

T

Confuseddotcom

hi dime..

im bipolarII.. and it is wrecking havoc in my life at the moment. I have been given quetiapine, well my psychiatrist discussed the different antipsychotics with me and seroquel/quetiapine is def the one with the least side effects, there is a small chance of developing diabetes and prolactin levels have to be checked for me. Im terrified of taking the seroquel as im worried i wont be "me" anymore.

My psychiatrist doesnt do counselling, he is still chasing psychology for that for me, after nearly 2 yrs with him. I find that i freeze when im in his office, but he is luckily very understanding and aware that i distrust men in general and men who have any kind of "control" over me especially, so we have worked out a system, he sits facing away from me and i hand him my notes that i keep during appointments. He reads what i have to "say" then discusses the best way to tackle the problems.

For me, SSRI's were a nightmare and he is more than happy to take my suggestions on board when it comes to my medication.. he has switched me onto mirtazapine, which is an snri and seems to be working well. It was initially to give me a sedative effect, but that has since worn off, hence also the choice of quetiapine. I didnt put on weight on the mirtazapine but i am very ruthless in my calorie intake.

I also get diazepam for "immediate" relief from anxiety attacks and clonazepam to deal with nightmares.

For me the biggest fear is that im losing "me" with all these medications and that im getting a false sense of happiness... like im just a miserable cow and me being level and happy is just an illusion.

I think it all depends on your personal brain chemistry and it can take quite a few trial and errors to get the meds/dosage right... ssris send me totally loopy, going off the deep end and im all over the place. Snris dont seem to do that to me, ive taken mirtazapine for 18 months now and so far ive had none of the evil side effects that prozac/seroxat/citalopram gave me.

My psychiatrist agrees that im in desperate need of psychology input but the waiting lists are ridiculously long over here.. even with him referring me as "urgent" every 3 months or so ...

Ive got a lot of selfhelp books and found that listening to audiobooks at night time helps me find better coping strategies.

As for prognosis... i dont think there is ever a "cure" as such, you just learn to manage your symptons and become aware of episodes.. im hypomanic, so for me its watching out for that downward spiral rather than getting too manic, but that is almost more difficult to spot as by the time i realise what is going on im in full blown depression mode.

Hope you find the right combination of therapy/meds soon