Need advice on stopping meds

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   L a d y f a c eposted 12 years ago

   I've been on Lithium and Wellbutrin xl for a little under two years now, and I want so badly to be off of them both. Contrary to what some people experience, I've been losing weight since I started taking them. I lost 35 lbs just in 2010. I have cognitive damage that just keeps getting worse. I read sentences multiple times before I really get them, I forget things, I have memory lapses, it's like I'm less intelligent. I used to be able to debate world and political issues for hours, and now I just don't even join in for fear of saying something stupid, or forgetting how I was going to make the point I already started making.
   
   I'm happy they got me through my last relapse, but I hate them. I'm staring at the bottles as I type with disdain, and tears forming. Can you never get a break with mental illness? Has anyone ever gone of their meds? Did your weight change? What was it like? Are you still off them? Did something help you get through it?
   
   Any advice would be greatly appreciated x 10.
   
   extra - I'm not looking to self medicate. I don't want to be on any drugs. Yes, being on medication is far better than being suicidal and lost, but would you try to to get off of them and see if you can make it, in exchange for literally losing your mind?

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      Rafiniposted 12 years agoin reply to this

      My best advice:  Talk with your doctor about weaning off your meds.  Don't do it by yourself - I did, and I'm worried I did some damage.
      
      btw - my weight went down, some, but its been years and hasn't improved.  my mind has gotten better, but it took a lot for that to happen...I was severely depressed and went w/o meds for years b/c of the cognitive issues you mentioned.  It wasn't until last year, after I joined HP & went back to school, that I noticed major improvements in cognitive ability & such.  I'm still not back to normal but I feel I'm improving a bit each day.
      
      Good luck - call your doctor.

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   PegCole17posted 12 years ago

   My husband is on Wellbutrin also, but with all the other meds he takes for diabetes related conditions it would be impossible to determine how this one med is affecting him. I hate taking meds too, but going off your prescription without discussing it with your doctor is not advisable. So sorry for your difficulties.

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   L a d y f a c eposted 12 years ago

   Thanks for the responses. My Dr. said I could try going from 900mg to 600mg of Lithium a day, and see how that goes. I tried it once last year and it didn't work out very well, but I'm going to try again. It would be great if I could keep at least a little bit of my mind intact.

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      Home Girlposted 12 years agoin reply to this

      Unfortunately most of contemporary medication are very strong and addictive. It means you have to really know how to quit. Talk to as many doctors as you can, investigate yourself and make a decision. it is both dangerous -  to take and to quit.  And it is always our health that matters.

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         L a d y f a c eposted 12 years agoin reply to this

         Yes, you are definitely correct, it is health that matters in the end.. It's so - crappy to have on one hand, the knowledge of your state of health without the drugs, and on the other hand, your state of health in other ways with the drugs. My husband had some interesting advice today.. what good is cognitive ability if you're not around to use it?

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      lorlie6posted 12 years agoin reply to this

      I take it that you're bi-polar, am I right?  Hence the Lithium.  Have you ever tried other meds for the condition?  Not that you currently want to...I take Lamictal and find it doesn't have the side effects that Lithium does.
      Day to day, I don't 'feel' that I'm taking meds.  I guess I achieve normalcy, whatever that may be!
      One piece of advice from another 'mentally challenged' hubber, be very, very careful when weaning off meds.  It MUST be gradual for most of these drugs-some of them so powerful that stopping them cold turkey can kill you.  One example is Phenobarbital.
      I understand how sick you are of taking these medications, but take it very, very easy.
      Thanks so much for posting this.
      All the best!

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         L a d y f a c eposted 12 years agoin reply to this

         You are correct, lorlie. Bi-polar for the win. No no, I'm willing to try other meds. I'm ok with physically taking the meds every day. It's the adverse side effects  of sanity I'm opposed to. I haven't tried Lamictal, but it's not the first time I've seen someone mention it. Maybe it's time I asked my doctor about it. Achieving some semblance of normalcy on a daily basis, or even close to a daily basis, would be heaven.
         
         Thank you for the advice. When I tried to reduce my Lithium last year I went from 900mg to 600, then after 1 month to 300mg...the next month I was back up to 600, and now I'm back up to 900. Good grief. I wonder if maybe I should have stayed at 600 longer, or if the hard times I was having at 300 were something I should have tried to 'stick out', if maybe they were side effects of weaning off. How to know??
         
         I've never heard of Phenobarbital, but you can bet whatever you like that I'll be googling it to find out more.
         
         Thanks for your advice.

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   BobbiRantposted 12 years ago

   As an outreach case manager, I work with people taking many of the same meds like you listed, plus the ones you mentioned.  Sometimes they will just stop taking them.  I'm not sure that's a good idea for them though.  You should maybe try what Mr Dr said because meds are prescribed for a reason.  I do know some meds can make people feel strange and so they hate the meds, I can't say I blame them.

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      L a d y f a c eposted 12 years agoin reply to this

      It's very bittersweet, you're right. I was strongly advised by both of my doctors to - no matter what - not stop cold turkey. I won't, for sure. I was reading up on some cases where people have done that.. and it has not gone well. It's actually quite scary. And we put this stuff into our bodies to make us better

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   TahoeDocposted 12 years ago

   Yes, please do this with your doctor's guidance and supervision. You can definitely make things worse by just stopping these meds. Taper as instructed and as hard as it is, go slow. Your body and brain need time to adjust to the change. I wasn't on these meds, but was on prednisone (just wrote about it), mercaptopurine and remicade. The prednisone especially, made my brain foggy and "weird" and also needed to be tapered. It took me months to get off of it, and I tried to go too fast (doctors make the worst patients) at one point and made myself very sick. It is probably also a good idea to try to decrease one of them at a time. Patience is required (and I do know how hard it is, really).
   
   Good luck. The key to mental illness, as you know, is to keep the proper balance of neurotransmitters in your brain. If your brain & body can't do it on their own, sometimes we need help from the "outside". It sucks, but it's the best we can do. Again, I say this as a doctor AND a patient who has been on some pretty strong medications that I hated (remicade, etc).
   Work with your doc and/or therapist and/or whoever can help you to do this the safest way. ((hug))

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      L a d y f a c eposted 12 years agoin reply to this

      I wonder how much time is needed between dosage changes? I've also heard that name before: prednisone. Thanks for your advice.
      
      I sigh, but you make an excellent point that no one with a mental illness or condition can deny. Some people can't walk and use wheelchairs, some people need insulin, some peoples' stomach valves don't close and they need to take meds every day to remedy it...and some peoples' brains get a kick out of being mean
      
      Thank you for the advice, and for the hug. It's actually comforting.

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   cnslrwebbposted 12 years ago

   As a therapist, I strongly suggest you do not stop taking your medications.  Quitting your meds can cause even more serious side effects than what you are already experiencing.  It seems to me that either your dosages are not right for you or you need to try something else.  Talk to your doctor - if you are being prescribed these by a regular physician you might want to consider consulting a psychiatrist as well since they are more familiar with psychotropic medications.  Either way, you need to develop a plan with your docotor to slowly work you off the medications or adjust your dosages.  Also ask about diet and supplements that could be helpful.  When dealing with mental illness it is important to look at all aspects of your health and lifestyle that can assit you in managing your symptoms.  Please, also if you are not already, consider counseling - certain therapies can help with the cognitive difficutlies you mentioned.
   
   Good luck to you and always make your health your first priority.

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      L a d y f a c eposted 12 years agoin reply to this

      Thanks for your advice, cnslrwebb Ahh - now I get your name as I type it out. Lol
      
      I was seeing a psychiatrist, and when I moved to my current house an hour away she said I should try to find someone closer to here and never made another followup appointment Its ok though, because all she did was stare at me and make me really uncomfortable. No advice, no words of wisdom, no strategies for applying a different perspective to things. Just, staring while I talked about whatever it was I thought she might be wanting me to talk about after the essential 'how are you' part was over.
      
      I think I'll follow the advice and ask my doctor to recommend me to someone else, closer to me now. He's an amazing doctor, and cares deeply for his patients. He's a rare breed these days around here and a little....old school? But I think you're right, I think a psych would know more about these drugs than him. My advice thus far has been if I feel ok I can try going down by one pill a day and see how it goes.
      
      I've gotten over the aversion to reintroducing myself when I get a new doctor. And also, 'what??' I had no idea there were therapies that can help with cognitive difficulties. Are we talking psychiatrist, psychologist or another type of counselor?

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   fit2dayposted 12 years ago

   If you want to stop, first off, look online and see if you can find a forum or something where others have gotten off of the same medication.
   I recommend coming off the meds gradually to keep from having serious withdrawal symptoms, whatever you decide to do, I wish you the best.

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      L a d y f a c eposted 12 years agoin reply to this

      fit2day - thanks for your best wishes. This is actually what I'm doing here, talking with other people who have gone through similar things, some even with the same medication, who can share their experiences, thoughts and opinions so I don't feel so overwhelmed and scared in all of this.

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   wyanjenposted 12 years ago

   I was taking several BP meds. Seroquel, Abilify (both of those made me very sick - wound up at the ER from them), Lamictal, Wellbutrin, Trazadone, and there's a few in there I don't even remember.
   
   I was definitely overmedicated.
   
   Right now I'm taking - nothing. And I feel great. Credit to talk therapy. I was skeptical about it and I only went because I had to, but I've been in remission for so long now that I can't clearly remember what the episodes were really like.
   
   My only issue now is sleeping. As in, I don't. Not because I don't need to, but my body seems to think the best time to sleep is when I'm supposed to be at work. I'm following up on this!
   
   My advice is: look into Lamictal. My body reacts to these meds badly but I never had side effects from it. And, even if you think it is silly and has no chance of helping, go to talk therapy.
   Many sessions my Dr. & I only talked about stuff like hockey and music. It was very strange - I was expecting all this deep psychoanalysis, talking about emotions and abuse and mom-issues & stuff like you see on TV. We did that rarely, when I wanted to, but otherwise... it was pretty painless.
   I can't even explain how it helped me. He must have sprinkled magic dust on me when I wasn't looking.

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   lorlie6posted 12 years ago

   Hi again, L a d y f a c e-I'm glad to see that Lamictal got 2 votes, it has so few side-effects I highly recommend it.  The only one I'm aware of is a rash that can develop if you take it 'full dose' too early in treatment.  My psychiatrist gradually increased the dosage from a tiny mgm. dosage to the therapeutic amount, and I never developed any problems at all.

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    L a d y f a c eposted 12 years ago

    Wyanjen and Lorlie - I was looking into lamical online and only made it as far as the ever-unreliable, citation need Wikipedia before it scared me with all of the crazy things that can happen. But, keeping in mind all of the crazy things that can happen even with Tylenol, I'm going to keep it in mind for when I get to see a new psychiatrist. Since I've moved, I don't have another one yet and am only seeing my GP.. who is amazing, but I don't think he 'gets' this area as well as a psychiatrist would.
    
    Good to hear that you didn't have any (or many) side effects. You should read that wikipedia article
    
    I'll also keep talk therapy in mind. I sort of do that with my GP. Every time I have an appointment he sets aside an extra appointment slot so we can just chat about whatever. Anything from bp stuff to life issues to how the house is coming along. I love my doctor

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       wyanjenposted 12 years agoin reply to this

       Awesome
       
       A good GP that you can trust is such an important thing.
       
       (I'll pass on the wikipedia article - my worries are about the nasty stuff we're hearing lately about the Seroquel I was taking! lol)

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          L a d y f a c eposted 12 years agoin reply to this

          I just looked it up and -- holy crap! It seems like it's a very good thing you're not on that anymore
          
          I just have to muster up the [insert whatever it takes here] to go through the withdrawl. The side effects almost make you want to stay on meds so you won't have to go through it all again, only this time in the name of getting off medication.

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             wyanjenposted 12 years agoin reply to this

             There's no easy answer, that's for damn sure.
             
             Just keep yourself aware of what's happening. My downfall has always been not paying close attention.
             I'd trade brain problems for kidney problems in a heartbeat - 'cuz your kidneys aren't what you use to think with so you never have to worry about whether your thinking is right!!!

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    L a d y f a c eposted 12 years ago

    You've got that right. During my last 'relapse' if you will, I was losing sight of everything, and completely and utterly lost in the BP haze.
    
    I'm with you on the kidney thing. And appendix, and liver, and bladder, and temporal mandibular joints.. lol. At least during those you've still got your wits about you!

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    cpvrposted 12 years ago

    I know I came off Lithium 600 mg cold-turkey, same with Seroquel, Ativan, and Athrax to name a few. Not only did a lot of my symptoms come back, I had no idea if I was ever going to get back on the right back, then I got back on Lithium since I was locked up and they couldn't supply me with my other medications, but I'd recommend doing it at your own risk.
    
    Ask your DR for help.

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    wyanjenposted 12 years ago

    wow.
    Yep, cold turkey is a dangerous thing. Glad you are better now.
    
    
    My only remaining symptom is insomnia. I was happily shoveling snow off my sidewalks -- at 1:30am. Hope my neighbors didn't notice... I'm still kinda new in this neighborhood

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