Cutting down from 40mg to 30mg. Any advice/tips?

Treatment and medication
1

I am a carer for my dad with severe depression and anxiety. Would like some advice and tips on cutting down dosage.

My dad is 73 and had started his depression and anxiety journey in January after a prostate biopsy left him fitted with a catheter followed by a cancer diagnosis. His anxiety had stopped him sleeping and eating so GP prescribed 20mg Citalopram. After 3 weeks of 20mg GP upped his dosage to 40mg. On hindsight, and if we had found this forum earlier, we may be should have let 20mg work for a bit longer, especially when 20mg is the max dosage for someone his age.

So we are now 9 weeks after being on 40mg, my dad is more relaxed, you catch him smiling and laughing sometimes and he is no longer completely silent. He is still very anxious and been crying heavily and uncontrollably as he is becoming more aware of his feeling of helplessness. Will only sit in certain chairs, come downstairs only at mealtimes, scared of using the toilet or shower, won’t go out to the garden etc. But we have noticed what appears to be cognitive impairment. For example: You tell him to sit down, he acknowledges, sits down, 10 seconds later he gets back up. You tell him to sit down again, he acknowledges, so on and so forth. And sometimes you find him laughing at nothing or the wrong things…

Although we are only 9 weeks on 40mg and he is still a long way from recovery, the GP has advised us to lower dosage to 30mg. It was only after antibiotics started doing strange things did the GP think 40mg may be too strong for him… Now he’s finished the antibiotics he is still restless and getting lots of brain zaps.

Since I have to make the decision whether to cut down and how to cut down dosage, I would appreciate any tips to make this as stress free as possible. I already know it will take a few weeks for him to settle after change of dosage. So do we just go straight to 30mg or taper down 40 to 35 to 30?

2

Hi Patsy

I am sorry your father is suffering with his health.

Yes 40mg is a huge dose to be on in such a short time and often a large dose gives you constant side effects as well as anxiety, so more is not always the best, but you and your father weren’t to know this, and yes he may feel more comfortable on 30mg or even 20mg given more time.

My experience from reducing these meds is to do it by 5mg or even 2.5mg - then stay on the reduced dose a good 4 weeks or longer before reducing again etc. The slower the better - because done too quickly and it’ll make him feel ill.

You’ll need a pill cutter / crusher to chop the tablets up. Maybe try the 5mg and if it affects him too much then do it by 2.5mg.

Hope this helps and hope your father begins to feel more comfortable.

K x

3

Thank you so much for your reply, Katecogs. It has been a lonely and scary few months taking on the responsibility of someone else’s health and well being. I feel much more confident going ahead with the reduction now after your clear instructions.

As much as I want my dad to get some relief asap from a lower dosage, I know it will be better for him in the long run to make the change slowly. A second doctor actually advised us to reduce from 40mg to 20mg with no taper. I can imagine how tough that would be for my dad… Thank you for the reassurance that I’m doing the right thing.

4

Hi Patsy

You know, it never fails to amaze me what Doctors advise with these meds. I really don’t know why their advice isn’t updated based on real experience from people who take them, because saying one thing from a text book and experiencing the real effects of these meds is totally different.

Yes in the long run he’ll benefit more quickly taking his time with the meds. I’ve seen so many people on this site who’ve gone too quick / too big a drop which makes them worse, and of course then rectifying it by increasing again really messes things up and takes a long time for it all to settle.

Oh my! Dropping from 40mg to 20mg would be like going ‘cold turkey’ from 20mg to nothing. When I withdrew from 20mg meds some years ago I spent a whole year coming off 20mg - doing it by 5mg each drop I had an easy ride with no issues at all. Some people need to do this by 2.5mg. Some years before I came off and I halved my dose first to 10mg, then halved again spending 6 months total withdrawing - then I had daily nausea, dizziness, agitation and brain zaps (harmless weird buzzes in the head). I felt pretty sick for months. If you dropped by 20mg this would be double the awful side effects.

I hope the drop goes well for your dad - bless him, he’s been through a lot :frowning: xx

Its always best let the Doctor know what you’re doing with the meds too (some aren’t happy with people cutting the tablets, but it is the best way).

5

Hi Kate,

Having been through the quick dosage increase we know it is torture for a few days and then takes weeks to settle, so we’re not naive enough to follow the doctors blindly now. The GP had helped my brother recover from (less severe) depression a few years ago, so we just trusted him to do the same for my dad. I will never forget how my dad had to be taken to a&e by ambulance 3 days after starting 20mg citalopram. He was in so much agony, we didn’t think he would make it… For the doctors to dismiss the side effects and casually suggest large dosage changes, it’s really quite insulting and upsetting.

We reduced my dad’s dosage to 35mg this morning. It was only afterwards that my mum told me she had reduced sleeping pill dosage for my dad a few days ago. No wonder he’s been so anxious, restless and having head jolts/brain zaps the past few days. We will see how it goes. Hopefully reducing both meds simultaneously will be ok. Fingers crossed he’ll be ok.

Thanks again for your kind and encouraging words, Kate.

6

hi patsy, ive just finished a course of antibiotics and im feeling really rather ill and very very restless x

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toria_072, really sorry to hear you’re going through the same thing. I know they say only a few antibiotics cause problems for people on citalopram, and my dad was not on one of those. Do you mind me asking which antibiotics you were on? For my dad it was Macrobid. Hope the restlessness settles for you soon.

8

hi, i took one doxycycline and had a horrendous reaction then clarithromycin full course, they also given me neuropathy which is awful!

9

Hi Patsy

Doctors greatly underestimate these meds and the effects they have on each individual - and of course everybody is different and reacts differntly, maybe due to age, size maybe …..

Ah yes reducing sleeping pills can make someone anxious and restless etc - aww bless him, having a rough time.

Is your dad aware of the things he’s doing and the medicine he takes (noticing you said his cognitive impairment is beginning to wane a bit) - wondering if he’s had a diagnosis of sorts……

Hope he’s more comfortable and the reductions goes smoothly for him.

K x

10

I think neither of the antibiotics you took are one of the known problematic ones… My dad’s anxiety increased each day as he worked through his course of antibiotics and his brain zaps got worse and worse. It was as though he had reduced citalopram dosage. Maybe some antibiotics suppress serotonin or GABA levels for some people? Not sure how long you have been on citalopram or if you had taken a course of antibiotics previously while on citalopram, but in case you have, did the restlessness and horrible feelings pass after a few days?

11

Not entirely sure my dad understands what is happening to him right now. We keep explaining and reminding him, but really not sure he is retaining the information. Before the lockdown we had urged the GP to make referral to see neurologist because of his body jolts and spasms. Knowing the waiting time would be many months, we wanted to get on the waiting list asap. But GP kept insisting my dad wasn’t ready…

We reduced to 35mg 4 days ago. The past 3 days have been super tough. For 2 days he woke at 4am panicking and crying because he thought we had gone missing or had left him. He kept checking every 5 minutes and forget where he last saw us causing him a lot of distress. He would only calm down if we were in the same room as him. Today he woke up thinking nothing was real, including us, and being ill had made him realise that everyone he met are hallucinations. However, he is less anxious today, but still forgetful. Hopefully his anxiety get better each day. His brain zaps are annoying him a lot as they appear often throughout the day whenever he sits still or lies down. He says it feels like he is being prodded in the head with electric rods and it radiates to the rest of his body.

We actually had a bit of an argument with the GP today. On hearing about my dad’s anxiety had increased the GP wanted him to go back to 40mg. We asked if it’s worth going to 37.5mg. He said it would make no difference, just as 35mg is no different to 40mg. But surely we were only having this conversation because 35mg is VERY different to 40mg. It’s so frustrating… We will give it another couple of days at 35mg and then decide what to do. The same with the sleeping pills. We had tapered down from 7.5mg zopiclone to a quarter of that over 6 weeks or so. Glad we didn’t tell the GP until today, otherwise he wouldn’t have allowed us to taper… As soon as we told him he was on 1.87mg for the past week, he said it wasn’t an effective dose, so just stop. We will continue to taper for a few more weeks.

12

i have taken antibiotics before whilst on cit, the last time i ended up in hospital as i had numbness and bells palsy, they thought i had MS but now ive learnt the hard way it was the antibiotics!!! the last time unfortunately the symptoms lasted 3 months, and if you google the side effects of each you will be very surprised, hope your dad improves soon.

13

Wow ….. I’m sitting here with my mouth open about the GP’s comments :o ….. there is ‘no’ difference between 35mg and 40mg??? Seriously? I’m speechless!

It makes me so cross as this is all too common with Doctors giving out such different advice to the next Doctor. Trouble is they probably read from text which is completely different to actually taking these meds, and of course you can’t feel this but only watch your dear dead go through this. I also think information is based on ALL anti-depressants yet the SSRI class meds are so very different and nothing like the older types ie Tricyclics.

Stick to your guns - you (or your dad) is the patient, and though Doctors are there for you and can guide you, if there’s something you want to do then they need to listen and work with you too.

Be careful with Zoplicone too and ease that off very slowly - of course his agitation could be due to that, but play safe and reduce this and the SSRI real slow and bit by bit.

Yes taper as low as you can go.

I remember when we cared for our late parents - one time my mum was in hospital after collapsing and being blue lighted in (they couldn’t find anything wrong even though she was quite poorly) ….. and the Doctor told my sister and I that she needed to go home as they need the beds. Those were his exact words.

I thought my sister was going to hit him :open_mouth:

Was your dad having body jolts and spasms before starting the Zoplicone and SSRI medications?

Why wouldn’t your dad be ready? Ready for what - get worse before he’s seen? Words fail me sometimes …….

Yes why not get on the waiting list now - surely by the time he gets to the top of the list he’ll be ‘ready’?? :wink:

He does sound quite confused ….. was he like that before the medications and was the medication prescribed to help?

Brain zaps are weird but not painful - I used to feel them more when I turned my head (I only had these when I withdrew from meds the first time because I’d done it too quick). Yes it is like being prodded in the head with 2 electric rods - and I always said like a fly being zapped in a blue light bug zapper.

Talking of your conversation with toria about antibiotics, I wonder if they interfere with other medicines that are being taken (or as you say, interferes with levels of Serotonin or GABA). Could be similar to when taking antibiotics when on the contraception pill and the advice is to use other precautions and it interferes with the pill. So it must have some effect on other meds too.

Anyway, hope things get more comfortable for your dad - and stick to your guns :wink: x

14

That must have been very frightening for you. Antibiotics and antidepressants are such strong medicines, they really should come with much bigger and clearer warnings. Fingers crossed your symptoms will pass more quickly this time.

My biggest fear at the moment is that my dad’s urine test will show he still has an infection and more antibiotics will be prescribed. If that happens, I really don’t know what to do.

15

The jolts and spasms appeared about a month after he had a catheter fitted and he had gone with more or less no sleep for around 6 weeks by then. It was their appearance and him insisting he was going to die of prostate cancer (he was diagnosed with stage 1 cancer and no treatment is required) that prompted us to realise something was very wrong. The GP came for a home visit and prescribed Zopiclone and Citalopram. Not sure if we just got used to the jolts and spasms or they improved, but looking back on my notes now I see that we stopped talking about them a few weeks after starting 40mg Citalopram. I also wonder now if they were brain zaps all along? Since my dad isn’t communicating (I haven’t been able to have a conversation with him since beginning of February), there is no way of really knowing.

Really sorry to hear what you went through at the hospital with your mum. I can only say I’m not too surprised because we experienced something very similar. When my dad was taken to hospital 3 days after first starting 20mg Citalopram for violent spasms the doctor who saw him at a&e first said she would try her best to let my dad stay overnight to be observed, then changed her tune and said if he doesn’t want to eat or take medicine, we should respect his wishes. So effectively, just let him die. Even though he wasn’t in his right mind to make any decisions at that point. My dad could barely walk at that time and no one at the hospital would even help us get him to the car. We just accepted defeat and took him home. I don’t know how these doctors sleep at night.

After 5 days of 35mg, we decided today to up it a little to 37.5mg. His short term memory has been badly affected. He would cry looking for my mum, be told she was in the kitchen, he would rush downstairs, sees her, turns and walks back upstairs. Even before he reaches the top of the stairs he is already crying again having forgotten he had only seen her a moment ago in the kitchen. We had a momentous moment yesterday when we managed to get him into the garden. My mum just asked him about it now and he doesn’t remember that ever happening. Although short term memory loss is not one of the withdrawal symptoms I have read about so far, I think it is safer to try reinstating his dosage at least partially so he is not so distressed and maybe less brain zaps. He was given 35mg today first, and only given the 2.5mg about an hour later when we couldn’t stand seeing him like that anymore. With only that extra 2.5mg, he seems to have become calmer. We will stay at 37.5mg for now.

It is scary how he became like this in a matter of days. It is like he developed advanced dementia overnight. Before his anxiety and depression he was very active and independent for someone in his 70s. He only retired a year ago and even went on holiday with my mum only 7 months ago for his birthday. I keep looking at the guidelines for taking Citalopram and how the maximum dosage is 20mg for people over 65. So why was my dad put on 40mg in the first place? Could this high dosage, which is not recommended for someone his age, be causing more long term damage than we expected?

16

aw thank you patsy, really hope your dads bloods come back clear x

17

Hi Patsy

Just catching up with you to see how things are with your dad?

18

Hi Kate,

Thanks for asking about how things are going.

There has been some pretty major developments in the past 3 weeks. My dad’s anxiety settled down but depression got a lot worse. He stopped eating, drinking and taking medicine. He wouldn’t get out of bed and just stared at the ceiling. He woke up one day and it was like any progress we had made previously was wiped from the slate. We were advised to call for an ambulance and the paramedics were angry enough to call our GP up personally and ask why my dad has been offered no psychiatric support or treatment. He finally said he was happy to refer him to see psychiatrist. But since the NHS would take many many months, and the private hospitals here are not seeing private patients due to the pandemic, we were stuck.

We made the drastic decision to take my dad out of the UK. My mum and my husband accompanied him back to his home country, where the pandemic is under control and the health system is still up and running. He’s been in hospital for 2 weeks now and they have done all the tests that we requested but were denied here. They found he had actually suffered a mild stroke in recent months, has a urinary infection and maybe has diabetes.

We’ve been told he is eating again, starting to smile and has seen psychiatrists a few times. I know they have stopped giving him Citalopram, but have no idea what they have replaced it with. I am very worried, but it’s totally out of my control now as I had to stay in the UK and sort things out here. I can only pray the doctors know what they’re doing and that my dad will start to recover now that he’s getting the medical attention he needs.

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Hi Patsy

Glad to hear your dad’s anxiety settled and sorry the depression worsened.

I wonder if the day he woke and it was like all progress had been wiped, was him having a setback / blip. These will happen when recovering and it is like you’ve gone backwards. They do pass.

Blimey! That’s unusual the paramedics actually called the GP - good for them!

Yes sadly it is a long wait to see a psychiatrist in the UK. I’m so sorry you’ve had to take him out of the UK but equally glad he’s had the care that was needed. That’s so appalling it had to come to this to get help, and do know it seems mental health takes a back seat every time.

I can’t believe he wasn’t tested for a stroke!!! How can medical staff miss that?

I’m so very sorry you had this treatment, forcing your father to have to leave, but I am pleased he’s been diagnosed and is getting the help he needs.

Sounds like he’s in good hands.

Is he far away from the UK?

20

Hi Kate,

Thanks for your reply.

It’s been a month since my dad was discharged from hospital. When my mum and my husband went to collect him, they found he was a completely changed man. He was physically weak from not wanting to eat the hospital food and lack of exercise, but his mind was clear, he was engaging in conversation and even asking questions. In the past 4 weeks he has gradually become more and more alert, can do many things for himself, can go out for an hour’s walk without walking aids, but he still lacks motivation and has little tolerance for things he finds challenging, be it tasks or foods he may not like. He’s seen a neurologist and had MRI and EEG done. Nothing abnormal was found. MRI showed some blocked and burst minor arteries, but he has a very good brain for someone of his age. He still has spasms while lying down resting or sitting relaxed for too long. Neurologist suggested that since the scans didn’t show anything strange, it’s probably his depression that’s causing the spasms. Once his depression improves, the spasms should also improve. He will have follow up appointments to monitor that every few weeks. A psychiatrist appointment has been booked for 4 weeks’ time.

So how did my dad make such big improvements after 2 weeks of hospital stay? We found out they had stopped his Citalopram cold turkey and started him on Mirtazapine 15mg. Basically it was our worst nightmare come true. The hospital had called many times in the first few days asking about medical history and medications, so we couldn’t believe it when they said they didn’t know what antidepressant he was on so they gave him Mirtazapine! I think my dad was extremely lucky to not have a bad reaction, but then we don’t know how he was in those 2 weeks in hospital when we had no contact. I know there could be a delay with withdrawal symptoms, but he’s ok so far and I pray it will stay that way. It’s been 6 weeks of 15mg Mirtazapine, which is the lowest dosage. He has been advised to up it to 30mg to further help with depression.

I guess it was the high dose Citalopram that was causing my dad all the cognitive problems and he was living in a haze all along. He says he doesn’t remember anything that happened before being discharged from hospital. Not the nightmarish few months of depression spent at home in the UK, not the flight, not being admitted to hospital. Fingers crossed things will keep getting better for him.

Yes, my dad’s on the other side of the world, in Hong Kong. They had the pandemic under control for a while with strictly enforced quarantining of arrivals into the territory, social distancing and compulsory mask wearing. They’ve had 7 covid related deaths so far, and many weeks of no local transmissions, but they’ve seen a surge in local cases in the past few days and fear there will be a large community outbreak soon.

Hope you and your family are keeping safe and healthy where you are.