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Campervan41

Campervan41: tapering risperidone

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Campervan41

Hello everyone

I'm currently tapering Respiridone for the second time. The first time in 2013 in ignorance and without proportion guidance I tapered too quickly from 2 mg and I ended up relapsing with psychosis. My relapse was diagnosed as due to stress and insomnia but I experienced really strong withdrawal effects.

I got better quickly and was on 1 mg Respiridone for about a year, my Dr wanted me to reduce earlier but I was moving house. for some reason I had been able to reduce from 1.5 mg to 1 mg without any problems but I hadn't been taking it for very long. I decided to try to taper in March 2015, switched to liquids and began my taper following advice I'd read on here to do things gradually. I was taking 0.5ml twice a day. I decided to try and reduce my morning dose in steps of 0.1ml. I know this is more than 10% sometimes but I find using the 1ml dosing syringe fiddly sometimes.

 

Anyway I found the tapering ok but the main thing I suffer from is terrible insomnia, so often I'm exhausted and really struggling to go to work and concentrate. Sometimes sleep was worse around the time I made the cuts. Once I was convinced I heard a police car outside my house in the morning and was worried about psychosis relapse, but it didn't reoccur and had happened when I'd had no sleep for ages and had made a cut. I also sometimes dream when I'm awake, but not very often.

 

Anyway sometimes I took much more than 4 weeks in between cuts. Finally got down to 0 5 ml a day this month. My periods stopped completely on Respiridone and although my Dr wasn't sure I was convinced it was due to the drugs. They thought I'd gone through the menopause- tests show I've got a menopausal profile. Anyway since tapering to 0.8ml day periods have restarted and are regular.

 

I'm now facing tapering the last 0.5ml but am really nervous about it. Not setting a timeframe for it and will be making 10% cuts but it involves going off the drug completely if I tolerate it. I know it's not much to reduce from compared to the struggles people have faced here.Some friends have expressed concerns about me getting ill again. But I just want to be free of the drug if I can and try and get my sleep back on track naturally. I feel I can't cope with the insomnia for another year- it's been bad since I took 1 mg before my taper. I used to be very sociable but I'm much more withdrawn now.

 

Been prescribed promethazine hydrochloride 10 mg for sleep which I take occasionally if I'm desperate, often it doesn't work.I've thought of asking my Dr about oestrogen but am worried about how that might interact with Respiridone.I now take fish oil and I've bought some vitamin B complex yesterday B6 and other B vitamins not B12 because I've read it can help insomnia but I'm a bit nervous about trying it because I've read on here it can be very activating. I don't want to be prescribed sleeping pills and get addicted to them.

 

That's my story anyway thanks for reading and sorry it's so long. I've really enjoyed reading other people's posts on this site,it's an amazing site and everyone is so supportive. I don't feel I can talk to friends about this as they wont understand about withdrawal and most have never taken any meds. My Drs are very nice but they don't know much about it either and I can't see a psychiatrist over here because they class me as recovered and think the psychosis was due to stress and severe insomnia. So I've researched everything myself and my Dr just gives me the scripts.

Edited by scallywag
added paragraph breaks

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AliG

 Campervan.   Welcome to S/A.  You seem quite knowledgeable already in terms of tapering , and congratulations on getting this far on your own. I can understand you being nervous about making the last taper from 0.5ml , but you have the right attitude already in terms of taking it slow and not setting a time frame . If you listen to your body , you should be fine. However, as you get lower in dosage , you do have to be very cautious.  I would stay away from the B vitamins , right now , as they can be very activating.  Regarding the insomnia, it is a very common withdrawal symptom . Having said that, it can be one of the toughest and most debilitating. It can also take a while, to recover from.  I would try and move away from the Promethazine, in favor of more natural alternatives.  Sleeping pills are not the answer. You have the right idea with  just getting the scripts , from your doctor and researching yourself.

Here are some useful links : 

http://survivingantidepressants.org/index.php?/topic/2878-micro-taper-instead-of-10-or-5-decreases/

http://survivingantidepressants.org/index.php?/topic/1716-tips-for-tapering-off-risperdal-risperidone/

http://survivingantidepressants.org/index.php?/topic/555-tips-to-help-sleep-so-many-of-us-have-withdrawal-insomnia/

http://survivingantidepressants.org/index.php?/topic/189-melatonin-for-sleep/

 

Have a read of Symptoms & self- care. There are lots of helpful suggestions, there.

 

This is your thread to record progress / tapering and ask questions. Please come back with any concerns  that you have.  Read around, and see what you think . Often, with insomnia , it can be a matter of  trying different strategies. However,  speaking from personal experience, sometimes it can just be a matter of time.

 

Best wishes,  Ali

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KarenB

Hello Campervan and welcome to s/a,

 

I think you've done a great job of taking the reins where your health is concerned.  You sound like a very strong person. 

 

AliG has given you some good links to read.  In that second link you'll see that w/d symptoms are often confused with relapse.  There is a good chance that the 'relapse' you experienced after your first tapering attempt was in fact withdrawal.  You'll want to have a good read about that so you don't confuse the two in this current taper.  

 

I also think it will be important to take the same dose morning and evening so that you are not messing your CNS around unnecessarily (if you are still taking uneven doses).

 

Keeping everything Simple, Slow & Stable is the key.  I'd leave out the B-vitamins for now, and start keeping daily symptom notes.  This helps you to be able to work out what to do and when to do it. 

 

It's good to have you here, please feel free to ask more questions,

Karen

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Campervan41

Thank you Ali and Karen for your feedback, it's really much appreciated. I've had a look at some of those links you recommended Ali and I'll look at them again later today. So I'll stay off the B vitamins and look at natural alternatives. Could you advise what CNS stands for? I take 0.5ml once a day before bedtime at the moment.

Campervan

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AliG

Hi Camper.   C.N.S. is your Central Nervous System. It gets very sensitive , in withdrawal and at the end of the day , it's all about keeping it steady and stable, by avoiding known stimulants like coffee, alcohol and certain offending foods and supplements. Sometimes, it's " trial & error" as everyone reacts individually , to certain factors. Some, react to light, sounds and other stimuli , in a negative way. You literally have to " feel " your way through this process, in a very tentative way , treading lightly. You will come to know what you can handle and what you can't. It's a matter of listening to your body , and treating it with care and caution, and a certain " finesse" . 

Once a day-  0.5ml is fine. It's alternating doses that are a problem.

 

You might find guided sleep meditations helpful , as well . You Tube have quite a few.  Also this link is helpful.

http://survivingantidepressants.org/index.php?/topic/1112-non-drug-techniques-to-cope-with-emotional-symptoms/

Ali

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Campervan41

Than you For clarifying that Ali that all makes a lot of sense. And thank you for the links - meditation is something I've done a bit of and I do find it useful. I'm hoping to do an 8 week mindfulness course sometime

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Petunia

I can't improve on the good advice given by Ali and Karen, but just wanted to add my welcome Campervan41. Its good to have you here, please stay in touch and let us know how you're doing from time to time.

 

You can use this thread as your ongoing journal to track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want. Its a good idea to bookmark it or follow it, so its easy to find again.

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Campervan41

Thanks Petunia for posting on my thread, I've just followed my topic so I can find it again.

I will give a general update because I've had a very up and down week.

I've been reading some stories about people who tapered from APs and have relapsed and I think that has scared me quite a bit this week - I don't want Psychosis again. My taper from 1mg Respiridone is nothing compared to what other members here are going through. I'm at 0.5ml now but my emotions are all over the place at the moment- really depressed one day, better the next, no motivation to do anything when I'm not at work but stay in bed then getting annoyed with myself. Wondering what the point is anymore. Hardly getting any sleep which doesn't help but I'm taking Magnesium this week and that seems to have helped a bit. I'm end of week 3 on 0.5ml and as I'm so up and down and have been feeling so low I think I will perhaps hold there longer than 4 weeks until I feel more settled. It seems these kind of feelings are really common when you're withdrawing and that's helpful to know. It's not a race after all and I tend to start feeling better when it gets towards Spring.

Today I'm at home and I'm going to sort my house out as best I can. Moved in over a year ago now and still quite a lot of stuff to sort out. Tommorrow going out to town and to see a film. Also making plans to catch up with friends over the next few weeks. Saw friends last weekend and I always feel better if I go out, I just seems a big effort beforehand.

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AliG

Hi Camper. You sound good. You can do this with the support and information ,here. Please, read around the site and get yourself educated. There is a mine of learning , on this site. Please come back with any questions and/ or concerns.

Ali

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KarenB

Hey Camper,

 

Sounds like you are managing quite well really.  Just keep listening to your body when making decisions. 

 

Karen

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Campervan41

Thank you Ali and KarenB for posting on my thread been doing a lot of reading but I'll keep on researching. Thanks a lot for your kind words and advice

 

Camper

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JanCarol

Hey Camper - it sounds like you needed to hold at .5 ml for awhile.  Did you taper again?

 

How are you?

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Campervan41

Hi JanCarol

 

No I haven't tapered any further. I've been at 0.5ml for over 6 weeks now and I've decided to hold there for a while. My mums terminally ill so I didn't think it was a good idea to taper any further for the time being. I think it's the right decision. I feel ok on the dose I'm on at the moment thanks

 

Best wishes

Camper

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Campervan41

Nothing major to report. Still holding at 0.5mg - have been since the 11 January. My emotions have settled and the winter depression has gone. Planning on holding a while longer- my mums not well and is deteriorating and My sleep is terrible, sometimes a few hours if I'm lucky but often none. I went 4 days in a row with none this week. That was bad. Sometimes I crash out upstairs after my dinner because I am so tired but then I can't sleep. Decided I will be absolutely strict with myself and stay up downstairs until 10pm, no screen time for 2 hours before bed and be in bed by 10pm. This seems to work better. At least it did last night. Magnesium Citrate also seems to work. I'm thinking of trying melatonin but I need to find a good company that ships to the UK. Spoke to my doctor about sleep. He has given me some online CBT links to try. Also said they prescribe Setraline for sleep but no way am I going there.I will also try meditation again, I have a CD of simple meditations I bought from a local Buddhist centre a few years back. At least Spring is here at last. Sunshine today:)

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KarenB

Well there's some good news in that update - thanks Camper.  Sounds like you are doing a good job in holding, and in taking care of yourself.  I hope you are able to have some real connected times with your mum.

 

Happy Springtime!

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Campervan41

Hello

 

I'm not expecting anyone to be able to reply to this. I'm still holding at 0.5ml Respiridone, have been since January 2016. I might start tapering again in a bit haven't decided yet. The only problem I've had is some really odd twitching under the skin on my right foot, like fascillations. I did see the doctor about it who thought it was benign. Seems to be better now thank goodness but I wondered if it could be due to the Respiridone.

 

Anyway I'm OK. Sleep still terrible but what's new. I just wondered if anyone had tried reflexology and how they found it. I've had it before but not since I had psychosis or anti psychotics. I'm booked in for a session at the end of the week and the therapist has just sent me the pre appointment form. I'm going to tell her about the psychosis incase she doesn't want to treat me. I've been in recovery for over 2 years now. I thought it might help me relax/ chill out/ sleep. However I'm a bit nervous about it especially as I'm flying on holiday the next day. I didn't originally plan it like that, it's a session at work. Sorry if this is not the right place to post.

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scallywag

Hey campervan -- welcome back and thanks for letting us know how things are going for you.

 

Here are a few threads on reflexology, reflexology/zone therapy, and acupuncture.

 

A quick search of the introductions forum using the word "reflexology" yielded a good number (20 or so) results.

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Campervan41

Hi Scallwag

 

Thank you for those links. I've just had a quick look. Seems like there are pressure points on the toes and big toes that correspond to the brain so I could ask the therapist to avoid those if I'm worried. I'll just do another search like you suggested. Thanks again amper

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scallywag

Also, ask them to NOT give you anything treatment that would be stimulating, even if they think it would help you.  There are members here at SA who've discovered this the hard way. :(

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Campervan41

Hi Scallyway that's a really good point thank you. I will make that clear to the therapist

Camper

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Campervan41

Hello I don't know if anyone can help with this. I'm tapering Respiridone I held my taper for over 12 months and started tapering again in February this year hand have made 2 10% cuts holding for well over a month each time (currently nearly 9 weeks since the last cut). Insomnia has been bad since being at 1 mg of the drug. Recently I've barely got any sleep at all -I need to add that going for nights on end not sleeping and occasionally getting 2-3 hours a night is normal for me. I think it's finally ground me down after 3 years. I'm seeing the doctor later this week for a review at my request- no sleep at all for over 20 days and virtually none over a three week period.

 

Has anyone got any experience of HRT (Hormone Replacement Therapy) I'm peri menopausal while taking Anita psychotics or psychiatric drugs.? Did you have any side effects. One of my former doctors suggested lack of oestrogen could be compounding my insomnia.

 

My doctor has previously talked about sertraline when I discussed insomnia and another doctor today has discussed amitriptyline. Amitriptyline has worked very well for me once ( prior to psychosis) but I was prescribed it for insomnia the first time I tapered down from Respiridone (too fast) it didn't work at all. I feel desperate but I'm really reluctant to introduce an SSRI into the mix at this stage, it could cause more problems than it solves. I don't doubt I'm depressed but so would anybody be if they've barely slept for 3 years!

 

I wanted to ask him about melatonin - you can't buy it in the U.K., I've read about it in this site. Is there anyone who has taken it together with an antipsychotic?

 

I bought 2 bottles of milk peptide capsules (Lactium 167mg) Swansons Ultra Women's Anti Stress Formula last year because I'd read a post by Alto about it saying it can be used for sleep. Has anyone taking an antipsychotic used this supplement. I've never actually tried it too nervous because Respiridone is an anti psychotic.

 

In desperation I've taken some Anti histamine (promethazine hydrochloride) and did actually sleep last night but I feel absolutely dreadful today. Have been advised by the GP not to take it more than 2-3 nights in a row. They don't want to prescribe me benzodiazepines and I have reacted badly to some in the past.

 

I realise I am asking very specific questions I don't expect answers to all of this but if anyone did have any feedback it would be useful.

I also intend looking into a Mindfulness course this summer and getting as much exercise as I can. Apart from that I follow all of the guidelines regarding sleep e.g. Regular routine, no iPads/ laptops a few hours before bed, dimming lights etc. Insomnia is just so rubbish for everyone here!

 

Many thanks for reading this

 

Camper

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Campervan41

Have found the information on Swansons Women's Anti Stress Formula (Lactium or milk peptides) as well as Melatonin for Sleep, have re- read and feel more informed now

 

Camper

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Campervan41

Ok I've seen my doctor today so just posting a quick update. They were sympathetic and tried to ask a lot of questions to try and determine the root cause of my insomnia about my job, stress levels etc - I enjoy my job, don't feel overly stressed and work with a great team of people so there really isn't anything there that's causing it. Explained I've done a report on David Healeys website https://rxisk.orgwhich identifies that Respiridone is likely to be the cause of my insomnia - they didn't comment on that but said that sometimes when you reduce Respiridone it unmasks other problems. Explained I didn't want to take Sertraline. The doctor recommended amitriptyline to take as and when needed as it has worked for me before - not the last time I took it though. I left with a prescription to take home. I was on it when my last psychotic break commenced so I feel really reluctant to take this. I also saw another doctor to discuss HRT ( Hormone Replacement Therapy) for the menopause and I've got some information to read and research to do.

 

There doesn't seem to be any answer I don't know if I expected any it's just practically impossible to function in full time work when this often complete insomnia that has been going on for over three years now.

 

I've decided to look into mindfulness again, restart yoga and the gymn and perhaps nutrients and vitamin and mineral testing. There is a charity centre that offers this in London and I could perhaps visit over the summer, I will try anything

http://www.foodforthebrain.org/

 

I took some promethazine hydrochloride last night it didn't work and I have a thick head today!

 

I might try some Of the Women's Anti Stress Formula (Lactium) over the weekend but probably not tonight will give my head chance to recover.

 

Best wishes

Camper

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Madeleine

You said you were perimenoupausal. Do you have hot flashes at night? Lots f women have insomnia during menopause. If that's the oroblem there are herbal remedies that you can get at health food stores. Also are you trying magnesium ? Lots of people find it helpful. Also make sure to keep your bedroom really dark, this last point helped me. I have blinds but some light got through and now I put a blanket over the blinds int I get black out curtains. And I sleep more deeply

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Campervan41

Hi Madeleine

No I don't have hot flashes but the first time I came off Respiridone I did then when I had to restart it again they stopped so I think the Respiridone may be blocking this. Yes I am taking magnesium every day along with fish oil, I find it helps. I do have thick curtains at the window too so no light gets in.

 

But thank you for posting

 

Best wishes

 

Camper

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Campervan41

 

Just posting a quick update. It’s been a difficult year but have continued gradually with taper despite this. Now at 0.15ml daily of Respiridone. I don’t want to talk about coming off as I still have a long way to go but I’m feeling very encouraged I’m in such a ,ow dose now. I’ve had a number of really severe depressive episodes this year. Some came and went quite quite quickly others lasted longer and at times I felt suicidal if I’m honest. I still have really chronic insomnia and I wonder if these things are related. A doctor I saw recently suggested they probably are. I’ve tryed everything for the insomnia CBT-I  (CBT for insomnia), doing a mindfulness course, exercise, no caffeine. I’vet recently just started HRT as I’m peri monopausal. It’s had some effect but not every night and I don’t seem to sleep beyond 2 am. Anyway currently I’ve just joined a gymn and I’m trying to walk for at least an hour a day. Also saw a Nutritionalist earlier in the year- I’m now pre diabetic Respiridone can cause this. Completely cut out sugar and I’ve been 99% successful in keeping to this apart from yesterday when I gave in and had a slice of cake (after an hours walk!). Had all my bloods and thyroids done which were ok mostly, Nutritionalist is recommending an OAT organic acids urine test by Great Plains Laboratory, To be honest I can’t afford it at the moment it’s £200. Has anyone had this done?They also recommended new supplements - new magnesium, montmorency cherry extract, something with hops and an iron supplement .

ive seen a psychiatrist recently because I became so concerned about the depressive episodes. Have been told it’s probably a depressive disorder. Advised I’m doing the right thing by tapering the Respiridone. Very occasionally I have auditory hallucinations when I’m very tired or stressed.. Advised on other meds if required but advised to continue with diet, exercise and CBT.

i think that’s all. Current strategies will be exercise, sunlight exposure and picking up mediation every day again. Oh and I’m think of getting some blue light blocking glasses for watching TV in evening- anyone tried them? 

Best wishes everyone!

Camper

 

 

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Campervan41

I just wanted to clarify I’m following the rule of only decreasing by 10% every 4 weeks at the most with my taper. I don’t set time targets for the taper I see how I feel and if I hit a rough patch like I hit a few this year I hold, sometimes for months. Once I held for a year after difficult family curcumstances.. Then when I feel stable again I will start the taper again. I personally won’t taper more than 10%  Of my current dose I just don’t think it’s worth the risk. If you’re on an antipsychotic taper you need to be extremely careful. The process of tapering an antipsychotic medication can induce psychosis. This happened to me the first time I tapered too fast in 2013. I’m  really concerned about reading that other people are trying to work out faster tapering schedules based on what other people have done. You have to base a tapering schedule on your own symptoms and how you feel. For me a 10% reduction every 4 weeks is the absolute fastest I would go.  It’s not a race and there are no prizes. The main goal is to conduct a slow and safe taper. 

Camper

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ChessieCat
7 hours ago, Campervan41 said:

It’s not a race and there are no prizes. The main goal is to conduct a slow and safe taper. 

 

I agree.

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