Roses Posted April 21, 2010 Report Share Posted April 21, 2010 As some of you are aware I am on a lot of meds. I don't usually reveal just what I'm on as it's scary. But I really could do with some advice. This is going to be a long post so apologies in advance and no worries if you can't read it all. Here is what I SHOULD be on: 280mg lofepramine (antidepressant) 200mg tryptofan (boosts antidepressant) 90mg propranolol (anxiety) 200mg quetiapine (anti psychotic) 800mg lithium (mood stabiliser) zolpidem at night, full dose (sleeping tablet) I take various amounts of these, various times a day but am taking some form of medication in morning, 2pm, 6pm and bed time. To say this is a tiring regime is putting it mildly. I would love to be on less medication and last summer I reduced a lot of this very quickly but with the support of hubbie went back onto most of it due to the whole police thing. I am now on.... 140mg lofepramine Zero Tryptofan 90mg propranolol 100mg quetiapine 800mg lithium sleeper Now the quetiapine I have reduced slowly and was hoping to taper off all together BUT I have been doing some research into lithium as bout 6 months ago I had a scan for a small goitre on my neck and it came back as me having 2 small cysts on my thyroid but my bloods were fine. However, I have been getting repeated sore throats over the last year including pain in the goitre, I'm seriously cold ALL the time with core temp rarely reaching the 36.9 mark. Usually 36.4ish. I get severe muscle cramps, periods of extreme tiredness, unexplicable weight gain etc... and I'm wondering if it is time to come off this lithium lark before I end up with full blown hypothyroidism. So I was thinking I would talk to my care co-ordinator bout reducing it to come off it but I think would be wise to stick with the 100mg retainer dose of quetiapine whilst doing it and possibly going back to full dose of lofepramine. So ideally I would be on.... 280mg lofepramine 90mg propranolol 100mg quetiapine sleeper Any thoughts/suggestions/advice/stories??? Link to comment Share on other sites More sharing options...
aurorablues Posted April 21, 2010 Report Share Posted April 21, 2010 Hi Roses, Wow, that's a lot of medication. Is your Psychiatrist or GP aware of the connections you have made about your current health and Lithium? Sometimes you have to spell it out to them, as they may not connect the dots. Especially if you are having regular bloods done and everything is coming back ok. I would definately speak to your care team about this fully, voicing all your concerns, with the intention of a complete med review to see if you can start slowly redcuing your Lithium and maybe tweaking a few of the others around. Aurora :) Link to comment Share on other sites More sharing options...
Barebones Posted April 21, 2010 Report Share Posted April 21, 2010 cant think at mo, but wanted to offer somthing. Why are u on an mood stabiler and anti psycotic? geez Link to comment Share on other sites More sharing options...
Roses Posted April 21, 2010 Author Report Share Posted April 21, 2010 my dx is: chronic recurrent depresssive disorder + anxiety + psychosis + ED + body dysmorphia. I have suffered with psychosis since an early teen so ws put on them year ago when I finally let medical professional know. I am on lithium as I've been very poorly and nothing was stabilising me. Lithium is used to back up antidepressants as well as stabilise the mood. I was one step away from ECT and long term institutionalisation. But this is not about the past, I want a healthy future. xxxxx Link to comment Share on other sites More sharing options...
Barebones Posted April 21, 2010 Report Share Posted April 21, 2010 ok i hear u rose, but anti p meds do that? being on both, could to me cause problems. As we know lithium is toxic and being on a anti p, that is why i asked. Some meds help with a vary of diffrent things,hense what im on. so lets forget that, look forward in u working through and getting beyond. xx Link to comment Share on other sites More sharing options...
Roses Posted April 21, 2010 Author Report Share Posted April 21, 2010 cool, sorry if I was short with you. xxx Link to comment Share on other sites More sharing options...
Roses Posted April 21, 2010 Author Report Share Posted April 21, 2010 Hmmm.... so Care-coordinator not in office today so I left a message. In meantime spoke to medical sec. who said would speak to doctor and get back to me. Then cc rang cos the mdeical sec. had gone straight to her (I thought you weren't in today). She said I can't get an appt to see my pdoc any sooner than my current appt on 1st of July!!!! I said I didn't want to discuss it with him, I just wanted to know the reduction procedure so I don't hurt myself. She questioned me about everything I already spoke about (throat really hurting now and voice all gratey). Then said well go to GP as he referred me for scan. Round and round we go... so I said he will say they are too small to operate and bloods fine so no can help go see pdoc! Then she said she will speak to the pdoc on Mon when he in, and see if he will consider me coming off the lithium. HOLD THE PHONE! I said HE WORKS WITH ME AS AN EQUAL!!! HE DOES NOT TELL ME WHAT TO DO!!!!! Jesus woman, make me feel shit why don't you. I don't have bi-polar, I am not unstable anymore. I am phoning you for advice on how to safely reduce and eliminate lithium from my life! If I get any symptoms coming back I know to go back on if it's done right. I am not having a BPD moment and saying I am stopping it right now all at once! FFS!!!!! I told her that I wanted to be talked to and treated as another adult please (very politely of course). She didn't know where to put herself and has since rang me back saying I need bloods and full thyroid test etc... and I said they did that not so long ago look it up woman! FFS I don't have "moron" stamped on my ass. Link to comment Share on other sites More sharing options...
Barebones Posted April 21, 2010 Report Share Posted April 21, 2010 why cant ur pdoc see u sooner? i know u got initial appoiintment, but if things are changing, then he needs to see u. If u want to see him, try going through GP? If nothing happens, and ive been in this situation of no come back, is do what u feel, little at a time would be best way, also google up to see what is suggested on this stuff. Good luck hun. Keep talking hun xx really not in great shapes i think in offering any help, gone down this afternoon. sry hun. Link to comment Share on other sites More sharing options...
Roses Posted April 21, 2010 Author Report Share Posted April 21, 2010 Thanks babe, I've seen you posted, in middle of tea and that, will respond later for you as I don't want to do it in a rush. Yeah I googled it tons and came up with nothing much but I will do it in small increments, which is what I told her but oh no, I'm not allowed to do that without seeing pdoc first! ROFL. Hmmm... last time I looked I was 34. Link to comment Share on other sites More sharing options...
aurorablues Posted April 21, 2010 Report Share Posted April 21, 2010 Is your GP allowed to give you advice on tapering off the Lithium safely? Link to comment Share on other sites More sharing options...
aurorablues Posted April 21, 2010 Report Share Posted April 21, 2010 I'm not allowed to do that without seeing pdoc first! ROFL. Hmmm... last time I looked I was 34. LOL That's exactly what i thought. Do they actually really believe it's not your choice to make. Link to comment Share on other sites More sharing options...
aurorablues Posted April 21, 2010 Report Share Posted April 21, 2010 Hi Roses, i found this.. Withdrawal rates The data suggests that if you are thinking of reducing or withdrawing from Lithium, for whatever reason, the slower it is done, the better the outcome. As with withdrawal from all psychiatric drugs, it is wise to plan before you discontinue. Think about introducing other therapeutic activities into your lifestyle before you withdraw, consider whether now is the right time for you to withdraw, what are your current stresses, financial, housing, social etc. Once you have considered these points you could start thinking about rates of withdrawal. As a general rule, the longer you have been taking a drug, the more adapted your brain and body have become to the presence of the drug. Therefore to avoid unwanted effects when withdrawing, you should reduce slowly and in small amounts. If you have been on Lithium for over 2 years, reducing by 10% every month would be a sensible rate of reduction and it would probably be safest to not attempt to reduce any quicker than this. However, you can modify this rate as you feel, after all you know your body best. Should you need to go slower or stop reducing at any time, you can judge this best. From the site Coming off psychiatric medication There's some good information on there. Take a look at the harm reduction guide on the home page :) Link to comment Share on other sites More sharing options...
Roses Posted April 21, 2010 Author Report Share Posted April 21, 2010 Thank you so much Aurora, that's really helpful advice. I'll go look on homepage now xxx Link to comment Share on other sites More sharing options...
Roses Posted May 5, 2010 Author Report Share Posted May 5, 2010 Just an update... following Aurora's link it said to reduce by 10% a month until off. The tablets I get are 400mg each so can break into 50mg reductions at a time. As this is a smaller reduction than suggested (but 100mg is too much) I am doing 50mg less every 2 weeks. This way it will take me 28 weeks to get down to 100mg. Then the plan is to be on 50mg for a month before finally coming off it all together so all in all it will take me 8 months. Well it's been 2 weeks on and I'm ok so reducing by another 50mg for the next 2 weeks. xxx Link to comment Share on other sites More sharing options...
aurorablues Posted May 5, 2010 Report Share Posted May 5, 2010 I wish you luck and zero withdrawls. Glad you found the link helpful x Link to comment Share on other sites More sharing options...
Roses Posted May 5, 2010 Author Report Share Posted May 5, 2010 Thanks hun. So far so good! xx Link to comment Share on other sites More sharing options...
Roses Posted May 7, 2010 Author Report Share Posted May 7, 2010 Ok I just realised I been talking out my arse! If the tablets are 400mg and I break them into quarters then it's a reduction of 100mg every time! Jesus, someone please pass me back my brain! So, I can't break them any smaller so the first 2 weeks I went down to 700mg and now down to 600mg for the next 2 weeks. I am gonna continue like this but when I get down to 100mg I am gonna stay on it for a month before trying to come off it all together. I am guessing by the time I get that low my body might be going "aaaaaaaaaaaaarrrrrrrrgggghhhhhh" a little bit. I got my blood results back from last week and thyroid test was normal and lithium was 0.6 so I got a little cushion before I go down below the therapeutic level of 0.4 so should be ok. Anyways just thought I'd update. I hope it works as it would be nice to "feel" things again. I mean how am I supposed to work on my feelings in therapy when I'm talking bout them 3rd party a lot of the time? Link to comment Share on other sites More sharing options...
abee.abee1991 Posted May 8, 2010 Report Share Posted May 8, 2010 Good luck roses, wishing you no side effects! Abigail-Laura Link to comment Share on other sites More sharing options...
donnam Posted May 8, 2010 Report Share Posted May 8, 2010 hugs hope it all goes well Link to comment Share on other sites More sharing options...
Roses Posted May 8, 2010 Author Report Share Posted May 8, 2010 Thanks so much guys. So far not so bad, just waiting to see how it goes. Been out helping our niece do some painting this avo and went for a 3 mile walk which helps. xxx Link to comment Share on other sites More sharing options...
Roses Posted May 19, 2010 Author Report Share Posted May 19, 2010 Just an update, still doing fine. Am down to 400mg as of tonight and will be on this for 2 weeks before going down again hopefully. So far so good. We did a bit more research and apparently reduction of lithium can be much, much quicker like coming off it over a month or something. I'm not going to do this and I still plan to be on the 100mg for a month at the end but this week I am going down 200mg instead of 100mg hence the down to 400mg thing. It's just trial and error really. Suck it and see!! LOL Anyway, has been up and down a bit more lately but still having more good days than bad and haven't self harmed at all or run away or anything so all looking good. In fact I've had more energy to go for more walks and doing the decorating and stuff so really it's sending positive shockwaves through all areas of my life. Last week I spoke to my therapist about it and he is behind me 100% and said if I need any help or advice I could talk to him, which is GREAT to know. He also said that he has quetiapine reduction guidelines which is also good to know when I'm ready (it was me mentioned it not him as the plan is to be off the lithium and quetiapine by end of Xmas hopefully. So yeah, it's good and I feel good about posting it which is strange but good, did I mention GOOD?????? :P Link to comment Share on other sites More sharing options...
Roses Posted June 1, 2010 Author Report Share Posted June 1, 2010 So another few weeks later and am still on 400 litihium cos have started decreasing the quetipaine again. Gone from 100 - 75 and didn't sleep the first night at all really, then 2nd and 3rd night really bad then been sort of fine ever since really. I don't forget everything and black out 20 mins after meds (is still hazy but there are definate memories there) and I look generally brighter, more alert and my skin has lost that lack-lustre hew of someone who is doped up to the eyeballs. I feel more tired cos body is adjusting but I am feeling a full range of emotions and I'm actually happy to be feeling naturally tired sometimes!! Another week at 75 and then wil lbe cutting to 50 so expecting another few bad nights sleep again but I'm a big girl, I can handle it! And the dreams - so vivid! Not just images but emotions, it's like being flooded with colour. I am so glad I got out of that 3/4 year coma. Link to comment Share on other sites More sharing options...
thesloaneranger Posted June 1, 2010 Report Share Posted June 1, 2010 *hugs roses* im proud of you hun xxx Link to comment Share on other sites More sharing options...
Roses Posted June 1, 2010 Author Report Share Posted June 1, 2010 thanks Sloane girl xxx Link to comment Share on other sites More sharing options...
abee.abee1991 Posted June 1, 2010 Report Share Posted June 1, 2010 proud off you rose! (((Rose))) Abigail-Laura x Link to comment Share on other sites More sharing options...
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