Happy New Year! new Here too. and would love your helps.

[Sloane2009]

heya,
Glad I came across this community, enjoyed reading some of the posts, helpful info for sure.
Currently I am taking Wellbutrin XL, topamax, Lamictal, and Xanax (for sleep) and have been feeling desperate on what to try next for my Bipolar.  I started on meds over 10 years ago when I was "diagnosed" (although not told with that terminology", then put eventually on Seraquel, Zoloft, Prozac, Buspar, Celexa......Then more recently----my doc had me on Cymbalta with my current meds minus the Xanax but I made the personal decision to stop the Seroquel after reading the trememdous amount of horrific side effects out there, including massive weight gain-----with some, over 100 lbs in a year.  Within 10 years, I went from 10mgs of the stuff to 600 to knock me out for sleep, as I always thought I was given it for my insomnia and not Bipolar.  Now it takes 6-8mg of Xanax ot help me sleep and like everything else I've tried, I'm up most of the night waiting for it to kick in.  Restless Leg Syndrome is new to me as well.  I think I have an extrememy high tolerance to medication (5'11" for a female) but I'm at a loss at what to do.  Lithium?  Depakote?  I don't want to experience hair loss or weight gain, and will continue on the Wellbutrin and Topamax, am not a believer in the Lamictal for a mood stabalizer  but kept taking it once I ousted the Seroquel..... I need to be able to sleep and the depression, Anxiety, highs and way lows (days and days of just trying to avoid life) have to go before I go crazy and lose all motivation.  Anyone out there have amazing luch with Seroquel and think I should give it another go?  Maybe another suggestion of anything that helps give you that euphoric zest for life that could save me too?  Please help and thanks to all in advance!

[monkeyc]

Hi and Welcome.

You certainly have been on the rollercoaster of drugs haven't you?

The first and obvious question is what does your psychiatrist suggest as the next step?

Xanax is bad because you build up a resistance and it stops working, its also habit forming and that also effects sleep.  you mention hair loss and weight gain in the same sentence as Lithium and Depakote but neither of those are common side effects of those drugs - sure they appear on very long lists on the internet but so does evetything else.

Weight gain is in fact a given side effect for 99% of Anti Depressants and Mood Stabilisers -its far more common in Anti Depresants actually.  You are on 2 drugs that do no cause weight gain (topamax causes loss actually) but Welbutrin can cause hypertension and mania as any AD can, though its safer than SSRI's like prozac amd zoloft.

I get concerned when I see people say they chose to stop meds as a personal decision and even more worried when the reaso is the internet where lies and rubbish fight with reality.

What has your doctor said about you stopping the Seroquel?

Ultimately there are heaps of drugs out there but you seem to have taken a lot of the Anti Depressant's and a few Mood Stabilising drugs - this question needs to go right back to your doctor.

That euphoric zest for life is hypomania and its what you need to avoid BTW - it can be a very bad thing because it has another side its old friend depression.

[dippy1]

Hi, was the seroquel a slow release or not?  Taking it all at night would not necessarilly cover the following day....I recently altered mine so that I now take one dose in the morning and another (bigger) dose at night, I also take Teazepam every night for sleep too. and some ADs  I had been finding that aftrnoons and evenings were worse than the mornings but the twice daily seroquel does seem to have helped.
BTW, no weight gain here...in fact have lost almost 70lbs since I first ot ill 18months ago (have been on seroquel since Oct 07)
we're all different but you will get various personal experiences from folks here.
Welcome to the site and good luck, Kx

[bernie40]

Hi happy new year to you too and welcome :-)

I think I have to go along with what monkeyc suggested and that is to discuss the way forward with your psychiatrist.  Personally I've tried depakote (still on a low dose) and have just recently started lithium.  I did gain weight on the high dose of depakote but on reflection it was mainly water weight.  So far so good on the lithium, its early days but i am being positive about it.

Like you i've tried a fair few!  You're not going to get euphoria from your meds, not if there working properly!  I know what its like to miss those euphoric moments but as monkeyc said this is mania/hypomania so not really such a good thing.

Although its good to hear other peoples experiences on various medications I don't think its a good idea to be put off trying something because of what you've read.  We are all so very different and I believe, imho, that nothing ventured nothing gained.  Hearing others experiences allows us to be more prepared however.

[Sloane2009]

hi and thanks so much for the response!  I was on Seroquel for almost 10 years and it definately helped initially to sleep and cure my insomnia (well, not naturally I guess) plus, being a red-eye flying flight attendand I've needed the extra help and it always did the trick, but I varied the doses depending on my layover sleep.  I was put on topamax to help the appetite and weight gain issues of the Seroquel and read 100's of postings from patients who gained massive weight gain that they attributed from Seroquel, yet after doing research on the Web, this seems to be a leading med for bi-polar.  Also,  After starting so many years ago on it on a low dose, like every other med I've tried, eventually I was at 10 times the amount for it to work and it took hours for it to kick in to get rest.  I never understood why it was a mood stabalizer and not for sleep as it worked like a powerful tranquilizer.  Dippy1, you asked if it was SR and I'm not sure but I can't imagine taking the stuff during the day, being how powerful the sedation effect is!  And you lost 70 lbs on it? Wow!  I've yet to hear that, in fact only one person who posted on a site regarding Seroquel was only able to say they didn't gain weight, the rest did, many quite rapidly.  
As far as Lithium and Depakote, I read many posts that said hair loss was a main side effect for them and I'm not particularly vain, but as we all know, having BP some things just don't help during the lows if you know what I mean!  I appreciate what you say monkeyc, and I should take what I read with a grain of salt because anything can be causing these side effects.
My doc just really believes in the Cymbalta, topamax, Seraquel, Wellbutrin cocktail and really just adjusts doses.  I've done all that multiple times and still have no motivation and just find comfort in sleeping all day and that's just no quality of life.  I'm tolerant to Xanax now which was of my suggestion to him and now will ask for his advice on Lithium or Depakote but I need energy and some will for life and to come out of this zombie state, I know you can relate! It's like a catch 22, be medicated and numb or manic and fall rock bottom.  Thanks for listening, understanding, and reminding me I'm not alone........

[Sloane2009]

hi dippy1,
not sure if i can incude everyone in one posting or need to write back in individual one's but I wrote back in my originial thread....  thanks so much for responding, it means a lot to me! have a great day!

[horselover65]

I hope you will give us an update when you have spoken to your doctor. I can't help a lot in regards to meds because I'm still waiting for my lithium to kick in. I can say that I have had pretty minimal side effects so far - certainly no weight gain or hair loss. I haven't gotten acne either. We just increased my dose. I've been on it for going on three months now. The only issues I can think of are mild nausea and a funny taste. I am not a fan of Cymbalta - I have a friend who is on it and I think she's become increasingly erratic. Also sounds like a pain to get off. I think your Xanax has likely run its course, so I hope the doctor has an idea to replace it. You may have trouble stopping that one, too. I also take Xanax, but not regularly and not for sleep. I take antihistimines to sleep, mostly to counteract a decongestant. I probably have a bias but I love that you are on topomax (topamax). I am going to ask to go back on it because it helped with my migraines a lot about five years ago. I was on that and Lamictal. The Lamictal didn't seem to do anything - tried it twice - but it sure was nice to avoid some of those migraines.

It sounds like you have medication problems similar to my mom - she has issues with any kind of sleeping pill or pain pill. She can take it once, but the second time it doesn't work at all. My heart goes out to you. She suffers from insomnia, but there doesn't seem to be any medicine at all that will help her. Hope your story has a happier ending!

[dippy1]

You can post back to all and many on this thread or send a note to any one individual. The seroquel I started as a twice daily same dose (low) regime. It tranquilised me completely for the first few days which at the time was a blessed thing. However after a few days the morning dose had much less impact (though I can't honestly say none). I quit the morning dose about six months ago cos I wanted to be more awake in the day, but found myself recently on loads of daily diazepam, then managed to cut that out slowly and found I was turning to the odd drink to calm me, things always seemed worse in the second half of the day, so after talking to p.nurse, it was agreed I should retry morning dose. Haven't really felt tranq.d by this (I take 25 only in the morning) but has helped stabilise my mood (esp helpful for irritability).
As for the weight loss; not due to the seroquel, rather despite it I think. The depression has really hit my appetite, the ADs too, and my bowels have suffered big time (TMI, sorry). Many people lose weight with major depression, I don't know whether seroquel usually stops that. I have gained a couple of pounds this past month, trying to eat more, but also have recently incraesed total quetiapine...who knows.
all the best K

[cowgirlnerd]

I know that LeftCoastChick has had a lot of good success with Seroquel - you might want to message her and ask for her advice.  She is an awesome friend for me and is very upfront and honest about her experiences, as well.

LCC, bulldozer, and monkeyc are my main avenues for advice (outside of my pdoc -of course) and they have always helped me with questions, suggestions, and areas to research on my own.  

Right now, I take Lamictal 200mg and it does numb me a bit, and have to go back to the pdoc for meds checks in a week.  I have taken a lot of what you are on and some to horrifying degrees (Cymbalta is the devil to me!), but I am taking the numbness and loss of mania as a good thing.  

You are at the right place for caring people and advocates for research.  Contact LeftCoastChick, too, to see how she has dealt with Seroquel.  I don't think we should ever make a personal decision to stop meds - unless it's with the pdoc's approval.

Rach

[ILADVOCATE]

I would say Lamictal has the least side effects out of all the mood stabilizers I've found but not everyone has that experience. This list has all currently available mood stabilizers available that approved medications and used off label for bipolar.
http://www.psycheducation.org/depression/meds/moodstabilizers.htm
If you can't tolerate the Lamictal there are other options.
As for atypical antipsychotics Abilify has the least potential of weight gain and sedation. You might ask about that. The experimental antipsychotic in Phase II FDA study glycine I've posted about may be start to incorporated as an adjunct (additional) therapy but I'll post more about that when the results become publicly available (in the mean time for interest google "Dr. Javitt, glycine". But as for what's approved and available now from everyday results and statistics I'd say Abilify is a good one to ask about. And its best if Xanax is not used long term as a person can build up a tolerance to it. But Rozerem which was derived from Melatonin and actually adjusts the sleep cycle has no potential for addiction and can be taken every day. So there are some ideas right there to speak to your psychiatrist about.

[cowgirlnerd]

Hey!  I wanted to see what you could find out on this topic!  You just mentioned about Rozerem being derived from Melatonin which is a natural way to adjust the sleep cycle,etc.  I saw on TV - ok, yes, my insomnia ***** right now and I am sleeping in 30-45 spurts.... something that was "natural" Allteril or something like that.  It talked about having Melatonin, Lytrophine (sp!?) which is the "drug" in turkey that makes you sleepy, and something else natural.

Yes, I know we have to check with our pdoc on adding anything to our drug cocktail, but what do you think about the "natural" options that seem to be coming out in droves lately about achieving natural sleep patterns.  Lord knows, I could use some sleep!    With my suicide attempt being an overdose attempt, my pdoc won't even consider anything to help me sleep.   I just wanted to see what you think and I want to talk to my pdoc about it when I go in a week.  

Thoughts???

Rach

[ILADVOCATE]

I looked it up and its basically a scam. However, melatonin even though safe can vary in quality and quantity as well as having impurities because its a natural remedy so Rozerem is a better option because its a prescription medication that works in exactly the same way and is non addictive (Lunesta although non addictive is still related to benzodiazepenes so my psychopharmocologist says there is a potential, Rozerem is not). I would ask about Rozerem and try that before any natural remedy. Lunesta is safe but is still related to benzos. Tradazone is an option for some people but it can create my physical disability so I wouldn't personally reccomend it. Rozerem is worth inquiring about if you haven't tried it.

[Sloane2009]

Thanks for the response, first and foremost, I finally feel understood as I'm new to discussion boards and how lucky was I to find such a warm comfortable place as this one?  I didn't know Lithium takes so long to kick in?  Most all meds I've tried you notice the difference within a month so I have yet to learn about the potential side effects but and hopeful benefits but at this point I'm ready to go for the big guns so to speak.  I know what you mean about Cymbalta, I totally agree---I am almost worse with it, and my doc is a big believer in it unfortunately so it's hard for him to reccomend other options.  As far as the Lamictal, I noticed a huge difference from the generic that recently came out and I ended up on the phone with my health provider pharmacist in the middle of the night scared to death about the side effects I was having---ataxia, rapid muscle spasms, at least that's what we came up with after ruling everything else out and the generic lamictal was the only new med in my system, not a side effect from the Brand name.  I also developed noise sensitivity as well, all after this, so all I can do is keep taking it until I have some kind of mood stabilizer or go back to the Brand, but I've lost faith that it works at all.  Topamax, now that's one that has not let me down.  Suprisingly, like you said, for migraines, but off-label, prescribed for depression, and appetite control/binge eating.  I tend to comfort eat when depressed so the topamax helps at least during times of mania when I feel charged up about getting my life back together, losing that extra weight===and the topamax really does kill the cravings because you just don't feel hungry like you would without it.  So it's a triple threat med and my mom has benefited from it too.
I'm sorry your mom has the insomnia too===bless her heart!  It's for real and not just something that people have because they are dependent on sleep meds.  My body can be physically tired but my mind won't allow it to wind down enough to rest and biologically it's a formula that doesn't jive.  I have tried the best of meds and after a few hours of waking up to vivid dreams, I'm pretty well spent.  Worse part of sleep meds is that you build a tolerance very quickly and it becomes ridiculous how much and how long for it to kick in, by that time my day is ruined,  I will say that Seroquel will do the trick but I'd sleep my life away it's so strong and weight gain is a major side effect and it has some pretty harsh other effects long term that I read about, enough to scare me and insist my doc take me off of it.  He was strongly against it because it's another one of his big four in his famous BP cocktail, and coming off of 10 years of the stuff was not pretty.  I was a train wreck.  But at this point I figure if I go back on, I get to start ove\ at the 25mg and not be at the 600mg I ended up at since it's been out of my system for so long.  Seroquel is one of the top BP drugs used from the research I've done, so here I am second guessing if it was smart to go off the stuff,  Up to date, it was the only thing that kept me asleep long enough to get sleep, but not sure if your mom's doc would agree.
Please keep us/me updated if poss. on your results to the Lithium.  I.m rooting for you and hoping it's the answer you've been looking for......take care!!

[Sloane2009]

Hi! Cowgirlnerd sent me over to ask your experience/opinion on Seroquel......was wondering if you wouldn't mind sharing it with me?  It was on of the first meds I was given 10 years ago, when I was (mis)diagnosed with mild-severe depression at a free clinic and needed something for insomia.  It definately worked for insomnia, knocked me out cold for 12-18 hours sometimes, was also on Prozac, then zoloft, Busbar, Celexa, you name it, I took it because they all eventually lost effectiveness and my desperation returned.  I started gaining rapid weight and was at my highest at one point, and only recently in the past year did research on forums to find that a good 80 or so percent of people on Seroquel attributed their massive gain to that med.  My doc eventually put me on Topamax which is off-label use for appetite control and it offsets the Seroquel.  Thing is, 25mg of Topamax would do the trick in the beginning and then 10 yrs later I'm needing 600mg to do the deed and it still took hours to kick in and by that time my day was ruined.  I took this and the research I'd done on what other horrific potential side effects it can have long term to my doc and told him I wanted off and he wasn't too thrilled as Seroquel is one of his main BP meds he really believes in.  I left his office with a script for Xanax, Ambien, Lunesta (none of which worked beyond 4 hours of vivid dreams) and now my Xanax has failed me for sleep and anxiety since I'm already intolerant and now I'm wondering if I need to go back to Seroquel which was the only med that kept me asleep.  I'm still reading that Seroquel is a main med for BP, and am thinking of giving it a second go.  Any thoughts or your experience will be so appreciated! thanks and all my best

[Sloane2009]

thanks so much for your help and I did contact LeftCoastChick to ask about her experiences on Seroquel.  I know what you mean about Cymbalta, I currently have been off it because it was the worse of any anti=depressant I've tried, despite the fact my doc is a firm believer in it so I'm at a loss right now knowing he will not have many alternative suggestions.  He is in CA and I now live in NY so I'm in the process of tring to find a doc out here.  BTW, not sure if you have tried it, but I had adverse side effects to the generic Lamictal that came out not to long ago and have since read other posts on the same experience.  It wasn't even that much of a discount and it was a huge mistake for me at least.  Thanks for you caring advice and referrals to other good people here, you rock!
take care, my best

[horselover65]

Hi,
I was surprised to find such a warm group of people, too. It was a good surprise. When we are at wit's end, the last thing we need is an unpleasant group, so it was a huge relief to find helpful, caring people here.

I confess that the lithium issue is entirely my own fault. I did not get my lab work done on time. Nowhere near on time - it was due around 12/10 or 12/11 and I finally got it done 12/30. Over two weeks late, almost three weeks late. I could have already had more than one increase, if needed. Any day now something could happen. Thanks for well wishes.

I've had a psychiatrist who had a standard protocol and didn't want to deviate from it. In the end, I had to give up and stop seeing him. My doctor now would probably have preferred to put me back on Lamictal, but since I'd been on it twice, I refused and said I wanted lithium. I worry about you seeing someone who is so rigid. We are all different. I hate to be negative about someone's doctor because it should be a special relationship. I wonder if you presented him with a list of options, maybe printed out some info on the meds - like from the psych journals, if he might, just might be more receptive to making some changes. If there's a university near you and you like this type of thing, you could spend forever reading through psych journals.

I guess it sounds like you might benefit from the Seroquel again, especially if it helps you sleep. I don't have any experience with it. Oh, thanks about my mom, too. I doubt she'd want to try Seroquel. She only sees a GP and I don't think he'd prescribe it for her. In the world of us and them - she thinks I'm the "them" and that is a drug I might take. She admits to SAD, but I think she suffers from chronic depression year-round. Regardless, she won't stay on medication for it. Love her anyway, but can't imagine her taking anything long-term, especially not anything she'd regard as for us really sick people. Weird, but that's how it goes.

I hope you find something that helps with the sleep. If it's related to anxiety, there are meds out there that are supposed to help with that. Maybe your doctor will have a suggestion. Have you ever been in a sleep lab? Maybe something happens while you are asleep that has conditioned you not to fall asleep. You say you have vivid dreams. I'm not surprised because you are trying to make up REM time. But, those kinds of dreams may be bad enough to have caused an unconscious aversion to sleep. I am sorry about the restless legs. My mom, my husband, and I all have it. My husband's is awful. He runs in his sleep sometimes. He runs when he's awake, but if he can't or he's injured, well he is all over the bed. Stress makes his worse. I'm kinda throwing things out to see if anything sounds familiar to you. I'm sorry I can't rattle off a list of potentially helpful medications. I wish I could. I spent about 20 years avoiding all these types of meds after being on some scary stuff as a teen, so I am way, way behind the curve when it comes to drug info.

Take care and good luck! I think the most essential thing is a better dialogue and more flexibility from your doctor, but it may require you to do an awful lot of work on your own. Hope you'll continue to let us know how it goes.

[LeftCoastChick]

I think, and this is only my personal experience, Seroquel has been fantastic - keeps my hypomanic highs at bay and helps at night with Trazadone.I've been using an extra 50mgs a day because I've been ill and it's making me anxious, but as soon as I feel better I can drop it down. In other words I have flexibility with that drug.  I hate benzo's but if the Seroquel hasn't worked, I have a back up of Ativan if required, doesn't happen often.

Personally, Lamactil aka lamotrogine has been a great drug. I have less depression then I've had in years. About 6 weeks ago I started getting weird nightmares and/or anxiety attacks in my sleep. My pdoc upped my Lithium and Lamactil and it seems to have corrected that issue. I am drug sensitive to many things, especially anti-biotics, and I've not had anything to speak of from the Lamactil or Seroquel, I may be having issues with my Lithium though, and sad because it works so damnably well in concert with the Lamactil. I had all my meds slowly titrated upwards, nothing was rushed. My pdoc is very conservative, I even asked her to up my Lamactil faster, but that was a no go. She gave me the "no that's not a good idea look".

I do cringe when I hear folks on possibly activating drugs when other drugs work as well if not better in the long term. I personally have a disdain for all drugs in the SSRI/SNRI category as a stand alone AD It's been proven the long term efficacy is short. MS's normally can be used long term if desired. I hear too many times "my med isn't working what's going on".  

Yeps the folks 'round these parts are awefully nice, I'm glad to know them. They've gotten me through a rough evening or two. I don't think I would be as stable without the insight I've recieved here. For that I am greatful.