after 9 months of treatment, i'm taking 10 steps back and pressing the reset button

[jgcr]

Hi everyone, I haven't written a whole lot lately and kind of have been hibernating over the holidays... So, I've been officially diagnosed in April 2014 and have been increasingly treated with Seroquel since then. It's been about 9 months of treatment and I've been off work since August due to how my body is reacting to all these increases in meds and other meds being added to the cocktail. Well, I'm now on 600 Seroquel (for a few months now) plus I am still on Effexor (we tried weaning off, but I got really sick, so we are waiting until my episodes are balanced to try again) and a new anti-depressant, 300 Bupropion or something like that... plus my thyroid meds and something so i can fall asleep at night (Quetiapine)... Unfortunately, none of these have been good enough to balance me out, so my Pdoc is sending me for blood work to see if I am able to go on Lithium. He is currently starting to wean me off Seroquel, and if the blood work is good then i will start Lithium once we are done weaning Seroquel...

If anyone has weaned off Seroquel before, was it difficult? Did it make you sick? I know Effexor made me lose my mind when we tried weaning off, so we stopped and I am still taking it. I'm scared to come off this med because it was so difficult for me to adjust to Seroquel when we were increasing it. What I'm really scared of is going on Lithium... My Pdoc says it's very hard on the kidneys and the thyroid. I already have a low thyroid. How was your experience with Lithium? Once my episodes (if ever!!!) get balanced, then we want to try weaning off Effexor again because it was making me rapid cycle through my episodes. After 9 months of being treated I thought i was close to finally being able to do this last step. (Am supposed to go back to work in April) We figured we would be done by then. Now, after all this time, we are starting back to zero. It takes a while for treatment to start working and I only will start in Feb as we are only weaning off Seroquel at the moment... I feel like all these months of treatment were for nothing, and I know I won't be able to get back to work in only 3 months... I feel so discouraged with all of this. I thought there was a light at the end of the tunnel... now, it's like that light disappeared and the tunnel grew longer. How many times am I going to have to find out treatment isn't working? Am I ever going to be able to have a normal life feeling normal and being able to work like everyone else? Anyone have any advice, or stories that may give me hope? I'm at a point where I've been through all this so far for absolutely nothing... nothing at all...

Thanks, sorry for the rant and having thoughts all over the place. I just don't have anywhere else to vent about this.

[AJ]

Seroquel is the brand name for Quetiapine. Perhaps I am misunderstanding your post. Are you being reduced from 600mg to 300mg?

Mucking around with med changes can be very frustrating. Trying to find a drug or drug combination that works, and that is tolerated is a challenge. It can take much trial and error and be quite discouraging. Even after you find the 'magic' formula it can need to be changed down the road. Having said that, I encourage you to persist. It's truly hard when you don't feel well and you're in the process of finding the right drug combination, but it's worth it.

Effexor is notorious for being a hard drug to get off. Even getting off it gradually can be hard on the system.

Lithium can be a good mood stabilizer, especially for the depressive component, but it is hard on the body. My experience with it was not a good one. I actually got worse on it was told to never go on it again. Most people don't have that reaction to it.

When I ended up in the hospital, I was there (certified) for a month and then off work for another 6 months. It was a long haul. I hated not being able to work. So much of my self worth was built around work. Fortunately I had disability payments at the time so the financial hit was lessened considerably. I did get back to work though. It was hard but I managed. If I had gone back too soon, I would have ended up just being off again.

There is a light at the end of the tunnel, even if you can't see it right now. Perhaps you have come to a bend in the track and you need to round the corner, so to speak. Hang in there and rant anytime!

[jgcr]

I'm actually on 600 Seroquel, and 300 Bupropion (anti-depressant), the Clonazepam is actually the sleeping meds the Pdoc gave me on top of the Seroquel. I just wrote the wrong name by accident, (fixed it). As for the bend in the road, it's just really frustrating. I guess that's "normal", I just had high hopes of feeling better faster, than not at all. As for work, well I am on work disability at the moment so the financial is ok, but i've always been a working person, and not being able to do the job I used to be able to do is a hard hit. Changing my expectations of myself and my future goals is a difficult thing to do as well I find. I guess it takes practice.

I am being reduced on the Seroquel to 500 for a week and then less the next week and so on until i'm done with it.

[uni]

I feel like all these months of treatment were for nothing, and I know I won't be able to get back to work in only 3 months... I feel so discouraged with all of this.

Hello jgcr. I'm sorry to hear that things have been so tough for you . What I have to say may or may not be helpful, but here it is:

In reading your post I'm reminded of how things were for me a number of years ago. I felt the same hopelessness and discouragement you describe. Also anger and sadness and fear and loneliness. I thought the process of trying different medications would never end. I was sick and I was so very tired. I just wanted to fast forward the whole experience and not be depressed anymore.

I saw no way around it; the only way was through. Ack. I realized I'd better keep my mind occupied with something other than the pain. It was very hard to get my mind off how I was feeling, so I decided to run with it, and took to keeping detailed charts of every med I took: name, dosage, timing, side effects, you name it. Sure, it was all about being ill, but it was also about doing what I could to get better. I came across those charts when I changed homes in 2013. They were a reminder of where I had been, and how grateful I am to have my life back. I think, for me, those charts helped keep me clinging to sanity. Other people may not find something like that helpful, but I found it a type of therapy.

You will get your life back too, jgcr. I know it's taking longer than you'd hoped. That seems to be the nature of the beast. You've been down some tunnels with dead ends. However, having eliminated them, you won't have to go down them again and can check out others for lights. And you will find the lights, way up ahead, in one - or more - of them. It may sound airy-fairy, but for what it's worth, I'm here waving my light around.

[markm]

Hey jgcr,
Vent away.
I don't know if I have much in the way of advice, except to hang on to any hope you have, however faint.
But here's my story as it relates to yours...

Over the last 15 years, I've been variously and improperly diagnosed and medicated - some of this was due also to my own mismanagement and follow-through, some to uninformed MDs and Pdocs... Just this fall, I've started on my maybe 7th iteration of the whole process. I'm determined not to sabotage this one by going off of my meds just because they make me feel like s**t, and I do right now.

Initially, I was treated for depression, but being that I only went to the MD when I felt depressed (I liked my mania) I received various anti-depressants which only exacerbated my mania when it struck again. Really highlighted my crazy. Terrible stress on my family. Finally 6yars ago I got the cyclothymia BP diagnosis and treatment, and my treatments didn't really work. I dumped them in despair a year ago, crashed this summer, lost my family in the process, but now have a new diagnosis of "some combination of rapid-cylcing BP II/mixed". So I'm starting all over again, too. The whole process of getting divalproex into therapeutic range, then adjusting for effectiveness, then maybe adding-on Abilify, maybe weaning off, and getting onto something else. I'm also working out some "complicating unhealthy self-medicating coping strategies" (read: addictions) plus I'm in therapy for childhood trauma... Now it sounds like I'm venting...sorry.

I just wanted to point out that it's a process, I guess. I have to look at it that way. It is discouraging at times, yes. Very much, especially if you're impatient like me. The tunnel has stretched out several times for me, and I've had to adjust my expectations. It is what it is. I can't change how things are or how they've gone in the past. It's a process of elimination of med regimes coupled with holistic recovery and lifestyle change and getting a support team around me where I live. I going to accept that I am NOT normal...that would just mess up my reality - Expecting normal like everyone else is incongruent with who I am. I am discovering how to accept and love myself before I care or myself. I need to have patience for who I am. I might take one path, only to find it didn't lead to where I want to be, so I double back, and take another path. Then repeat if necessary. I'll do this over and over for myself and loved ones. This will be MY normal. Besides, normal is just a statistical probability...it's descriptive and not prescriptive.

Hang in there, take care of yourself, be patient for yourself, love yourself, have compassion for yourself.
Peace,

[paul m]

Hello JGCR. I'm sorry that you are having so many difficulties. You asked a number of questions and I can only relate them to my own experiences.

1) seroquel is usually one of the easier meds to get off of. It is definitely sedating. Seorquel does two things. One slows the mind down so that we can heal, acts as a sleeping agent. Take enough seroquel and you will have no cares or worries, you won't have a life either, because you will be in zombie land. If when you are done taking the seroquel and you still can't sleep, try asking your doctor for 50mg of it. The first 25-100 mg acts more as a sleeping agent than an antipyschotic.

2) Lithium is hard for some people to take. I've been taking it for 20 yrs with no body damage. The side effects are a problem when you first start taking it, but they diminish in time. However you do have to have bloodwork done on a regular basis as it can affect kidney functionin some people. Lithium is one of the easiest meds to start and/or stop and you will know within 30 days of reaching the theraputic dose if it is working or not. I know a lot of people who have taken Lithium for years without problems.The key is to keep getting checked, if problems do start (kidney etc) usually they come on very slowly and you have lots of time to quit taking lithium.

3) Effexor can takes mths to properly quit. Even then you may have to go to see a compounding pharmacist and get the smallest dose (37.5mg) cut in half. crazymeds has a decent article onhow to quit taking effexor. http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/Effexor scroll down the page to near the bottom. You will note that it may be necessary to take a mall amount of prozac for a short time and then wean yourself off of the prozac.

Caution. Some people quit taking effexor quickly, but they are lucky, for the unlucky quitting too quickly can cause lasting problems(yrs) , so go slowly.

4) When will you get your life back and be able to work? It could happen at any time. In a couple of weeks or perhaps never. I'm not trying to be negative. I know many people who have returned to work or not even missed work because of the effects of bipolar and the meds that they take. Unfortunately I know just as many people who never returned to work. However that doesn't mean that you can't enjoy your life. I'm one of the ones who couldn't go back to work and it took me an extraordinarily long time to find out what worked (over 30 different meds tried in approx 100 different combinations) . While I can't work, and that upset me for a long time, I do enjoy my life now. It's certainly changed, but I enjoy it as much as I used to.

If you have been off work since August and your prospects don't look good for returning to work in the next few mths than you should consider applying for Canada Pension Disability payments. Take Care. paul m

[dave]

just a quick reply as i need to get some sleep now. every situation is different but i was off work several times over a short period of a few years. after my last sick leave where i was off for for more than a year i was able to go back to work part time in another field. now i work 2 days a week and go to college the other 3 days. this is my second semester. for a very long time i had no prospects and no hope. now i see a bit of light up ahead...things can change and no one can for sure say how or why but things can get better...i don't know how to accurately articulate the depths of my dispair and i still have frequent low periods thanks to the rapid cycling but i don't want to die all the tim now and don't spend weeks in bed sleeping 20+ hours most days or stare at the walls for hours confused and devastated. .now i want to live and think i can..hope that helps some..if my life can turn around i know others can too..i was really fuct for a long time..fuct right up real real bad