Jeppe: taking Ketipinor (quetiapine) - a safe sleeping aids with no side affects

[Jeppe]

Hi all,

 

I am a Finn, 60 y.o., and therefore my English is not so good and accurate. However, I already have found useful advice here.

 

My sleeping apnea was treated with Triptyl 12 mg for ten years. Then I got a proper diagnose and a CPAP machine in Jan.2020, but, my sleep did not recover. The doctor first ordered Lyrica+Escitalopram for a better sleep, but, this did not help at all; it only worsened the poor sleep. After that she compelled me to take Agomelatine 50 mg with Ketipinor 100-400 mg, and told me that I have to take these if I ever wanted to sleep. These drugs were safe, they did not cause any problems, and they were easy to get rid of. 

 

I quit Agomelatine by myself in Feb.2022, and started to think that the cause of poor sleep were now the Ketipinor. I never took more than 200 mg, and lowered the dosis from 200 to 100 in 2021, and from 100 to 50 in 2022. I paid some visits to a sleep clinique in 2022. They adviced me to quit Ketipinor rapidly, in one night. This gave me the withdrawal symptoms, and, I returned Ketipinor thinking I could not cope without it.

 

However, on Jan.3rd 2023 I lowered to 25, by myself. I got panic reactions and poor sleep, but, now I knew these were withdrawal symptons that would ease during time. Now, I visited the psychiatrist of the sleep clinique, and he gave me instructions to deal the 25 mg into 4 pieces, and, drop 1 piece every fortnight. With this support, I lowered the dosis to 18 on Jan.20th. Now I go with 18 mg. However, this speed might be too heavy for me.

 

Any help is appreciated.

 

 

[Jeppe]

Quote

 2010 - March 2020 - Triptyl 12,5 mg

 March 2020 - Lyrica + Escitalopram   

 May 2020 - January 2022 - Agomelatine 50 mg
 February  2022 - Agomelatine 25 mg

 May 2020 - May 2021 Ketipinor (Quetiapine) 200 mg-100 mg
 June 2021 -  December 2021  Ketipinor  75 mg  (September  100 mg)
 2022 -  Ketipinor  50 mg (July - October 75 mg)
 May 2022 - July 2022 Gabrion (Gabapentine) 100 mg
 Jan.3 2023 Ketipinor 25 mg
 Jan.20 2023 Ketipinor 18 mg

 

[Altostrata]

Welcome, @Jeppe

 

You are currently taking only Ketipinor (quetiapine)? You've been taking it continuously since May 2020? How do you feel after reducing to 18mg?

 

Quetiapine is an antipsychotic with a lot of adverse effects. See Tips for tapering off quetiapine (Seroquel)

 

To help us out, follow these instructions Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.

[Jeppe]

20 hours ago, Jeppe said:

 

Hi, and, thanks.

 

Right, I have been taking Ketipinor continuously for almoust three years. There were some attempts to change medication, but, neither the doctor nor I knew about the right procedure to withdraw, so I returned to Ketipinor after one night awake each time. Today I take only Ketipinor, 18mg, but I still have tablets of Gabrion for emergencies. I have taken one Gabrion 100 mg when having the worst moments at night, fortunately, only 4 times during 3 weeks. I know that Gabrion is dangerously poisonous, too.

 

The years suffering from sleep apnea made my sleep so broken, that I kept waking up through the nights even when finally sleeping with the CPAP machine. This has not changed, though Ketipinor was promised to make sleep better. I always wake up about ten times per night, and always fall into sleep easily soon after. The Oura ring shows the amount of deep sleep about 25 min average (since April 2021). This is not enough for me. After the latest drop the deep sleep has been only 13 min (average).

 

The drop of Ketipinor from 50 to 25 mg was dramatically making deep sleep better for 4 nights. I got an hour of deep sleep during a period of 4 nights, an hour each. After that the situation returned to my normal again.

 

The drop to 18 did not give any improvements as far as I noticed. I experience twitching of muscles every night, but not much, only some short moments. I felt cold during some nights, but now that is over. The worst symptom is insomnia, caused by some kind of a lack of Ketipinor. I have easily fallen to sleep during the whole of my life. This sudden insomnia is clearly caused by changes in the levels of this medicine inside my system. The drop till 25 mg gave me two bad nights (the 6th and 7th) as well as the drop till 18 (similarly). Unluckily, after the latest drop the deep sleep has been only 13 min (average).

 

As I did not get the good nights after this drop to 18 mg, I suppose, that I must proceed slower. Probably I need more time on this level, and, definitely the next step must be smaller.

 

If you find time to guide me further, I really appreciate it. There is no hurry to answer, as now I stay on the level of 18 mg, unless you advice me to do something else.

 

 

 

 

 

 

 

 

[Altostrata]

You might go back to 20mg quetiapine, stabilize for some weeks, and taper slower after that.

[Jeppe]

Thank you for your kind and rapid answer. I will do so, and, I had better make the correction immediately than later.

[Altostrata]

Please let us know how you are doing.

[Jeppe]

Hi, last night I had Ketipinor 20 mg. I did not notice differences yet, and, Oura shows 6 min deep sleep, 9 awakenings and 7 hours total sleep.

 

When making breakfast today, I dropped the butter box twice. This symptom I already have since 3 years on mornings after the worst deep sleep.

 

My massagist noticed several nerve entrapments  yesterday, and these symptoms are me totally new. I think the lack of deep sleep now causes them.

 

But, I hope this dosis of 20mg will make me better after  some weeks.

 

 

[Jeppe]

Hi Altostrata, hi, folks,

 

Now I realize that I already have made mistakes. I found this group after having already dropped 50->25 and 25->18. Both steps seem to have been too optimistic.

 

Encouraged and adviced by your help,  I am now on 20 mg, and things are starting to be better. Last nigth, I had no symptoms, no twisting of muscles, no stabs like a knife, no heart pounding, and the amount of deep sleep was 27 min, which is the 2nd best in 2 weeks. 

 

In the Instructions section, I find excellent advice. Now, I find that my period of 4 good nights was a window, not a permanent result. It shows me this tapering is resulting to a right direction. After the good window, I should have waited for the next waves to pass by and the next window to occur, at least. 

 

I suppose, the following few months, I may suffer more withdrawal symptoms because of these two overoptimistic steps I made. This time, I will be wiser  to proceed more cafefully. Fortunately, I have time, and I have the support of this group. Thanks.

 

 

 

 

[Altostrata]

Yes, you're on the right track now. Your nervous system will settle down, then you can taper more systematically.

 

Please let us know if you have specific questions about tapering.

[hayduke]

It takes a bit of time to restabilise after each change.  You might feel worse for a bit after making adjustments, as long as they're not huge changes though you ought to feel a lot steadier within a week or three.

 

Slow and steady wins the race eh.

 

Sleep apnoea is often correlated with excess body weight.  When I was drugged I had to fight to keep my weight down and diabetes away, but I don't regret a moment of exercise I did then.  As you come off, your metabolism will readjust to help keep weight down too.

[Jeppe]

Thanks, Hayduke, for the encouragement.

You are right; exercise and motion are valuable means when recovering from these drugs. 

I am still on 20 mg of Quetiapine, the worst waves may be behind, but, I am looking forward to better windows to come.

 

[Jeppe]

And, thanks, Altostata, for your continous support. 

As you already adviced me to stabilize some weeks, I am staying on the current level for some time. The nervous system has not recovered enough, although it has recovered some.

[Altostrata]

Hello, I changed the style in your signature to make it easier to see at a glance.

[Jeppe]

Hi.

 

Right, the signature is easy to read now.

 

I have gotten gradually better, when stabilizing these two months. The sleep quality is poor, just like it was poor before the start of the medication. But, I have recovered from the withdrawal symptoms, as far as I can see now. I still wake up ten times during one night, and, the amount of deep sleep is low (20 minutes per night), but, I hope this will change when I get rid of the medicine after the tapering to level zero.

 

I made my first safe tapering on March, 22, and,  dropped the Ketipinor dose from 20 to 19 mg. It has affected the sleep, and, given me some symptoms which are much milder now that the  step was not too high. Now that this 5 % drop was that easy, I may drop 10 % next time.

 

 

 

 

 

 

 

 

[Altostrata]

Good to hear. You might be interested in 

 

 

What is the sleep cycle?

 

Waking with panic or anxiety -- managing the morning cortisol spike

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

White noise devices for sleep

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

[Jeppe]

Hi all,

 

Now, I have  dropped the Ketipinor (Quetiapine) dose from 19 to 17,1 mg on Saturday, May 13th.

 

The first night was extraordinary, as I could sleep well, and got 90 minutes of deep sleep. I had only five awakenings, but, they did not make the sleep poor, however. This was the best night in two years of time, according to the Oura ring.

 

This Monday, May 22th began new withdrawal symptoms. As so many have written here about insomnia and panic attacks, it did not suprise me. Anyhow, it is strange that, having taken the 17,1 mg, after half an hour, the panic begins to rise. I am totally calm, and, I have no mental problems, but this panic is bodily. It makes the muscles around the vagus nerve so thight that the muscles hurt. It makes me feel the heart beating in the throat. The worst symptom is insomnia. I feel like it was this medicine that prevents me from sleeping. Luckily, i still get six hours of sleep, when staying in bed for ten hours. I still hope that the situation will get more bearable soon.

 

Yesterday before sleep time, I listened to binaural beats, and, after that I relaxed according to the instructions of my physiotherapist, and so I did not feel the panic until in bed.

 

 

 

 

 

 

 

 

 

 

[Altostrata]

Please let your current symptoms go away completely before making another reduction. You may be more comfortable with 5% reductions.

[Jeppe]

Hi, all,

and, thanks again, Altostata, for your ongoing support. 

I have made two minor changes for the Quetiapine medication, as I dropped 1 mg in June, and, another 1 mg in July. The withdrawal symptoms are easier to bear now that the reduction was relatively smaller. However, the hot summer weather makes the sleep poorer, just like some other people have been telling here. The houses in Finland have been constructed to keep the warmth inside (as the winters used to be very cold), but these days this practise is us harmful. I am so much looking forward to the autumn rains to come!

 

 

[Altostrata]

Yes, hot weather can disturb sleep. Please see these sleep tips:

 

 

What is the sleep cycle?

 

Waking with panic or anxiety -- managing the morning cortisol spike

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

White noise devices for sleep

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

[Jeppe]

Hi, all, and, thanks again, for your kind support.

I made two changes to my Ketipinor (Quetiapine) dosis, one was -5%, and the other -7%. I enjoyed two better weeks at the end of  July, but, now I have been experiencing worsened sleep ever since. It is strange how the withdrawal symptoms develop and change. These days the physical panic attacs only when trying to fall into sleep, and, it demands breathing exercises of 20 minutes or more to cope with it. The sleep is very broken as I keep waking every hour during the night. However, these days the neuropathic pain is absent.

I have read

And, I plan following it soon after getting to level 12.5.

[Altostrata]

Quote

Jul.14, 15 mg; Aug.10, 14.3 mg; Sep.13, 13.3 mg

 

It appears you made a reduction in September? Did the insomnia start in August?

[Jeppe]

Thanks for asking.

 

I made a 5% reduction on 14th August, and, another 7% on 13th September. I lost the better sleeping days exactly on Aug.14th. I am just wondering if I could have weighed the pills wrong, or, is it just an odd coincidence.

 

Now, fortunately, I got three decent nights after Friday. I feel myself capable again, at least for some while.

 

As these minor reductions were so hard, I am eager to try that method of reducing only 2.5% every week. 

 

 

 

 

[Altostrata]

Withdrawal insomnia is very, very common. Good to hear it's cleared up.

[hayduke]

23 hours ago, Jeppe said:

As these minor reductions were so hard, I am eager to try that method of reducing only 2.5% every week. 

 

Good idea.  I found brassmonkey's method the smoothest way I tried.  The two week holds every month are helpful for a bit of relief from the symptoms too.

[Jeppe]

Hi,

 

Now I am struggling with 12,5 mg of Quetiapine, since October 13th. Fortunately, this tablet size is sold by the pharmacy, so there is no need to cut the pills for a while.

 

Quetiapine has cognitive and memory affects, which however turn milder alongside with the slow tapering process. I have already accepted the possibility that maybe I

will always be a little slower than before this medication, I mean that maybe I will never acchieve the healthy condition, or, maybe I will never be the person I once was. Still, I am sure, that one day I will be better without this medication.

 

The worst withdrawal symptom is insomnia. Normally, I have fallen into sleep in half an hour, having taken the medicine. These days,  I sometimes have to wait an extra hour or more. And, the medicine makes me wake up about ten times each night, so the sleep continues poor and broken. I keep relaxing the evenings, eating healthily, avoiding coffee after 1 p.m. etc. Unfortunately, there will be poor nights, and, sometimes some better ones.

 

 

 

 

 

[Mittenraised]

Jeppe, hows the taper going? Sleep improving?

[Jeppe]

Hi, and, thaks for asking. 

 

Unfortunately, the sleep is poor and broken. I am wondering, could it be so that this would be the regular situation on this level. 

[Mittenraised]

It might be. Others that have been at your stage in the taper may be able to answer that? @FeralCatman I would stay where your at. I hope you get some rest.

[Jeppe]

Now, the Pharmacy makes 12.5 mg and 5.0 mg tablets for me, and, I am so glad about this. So far, I therefore manage the tapering using a knife and scales.

[Jeppe]

Glad to tell you about slightly better sleeping for three weeks. I keep waking up, but now I dont't have to lie awake for hours. The amount of deep sleep, unfortunately, is still under 20 min every night. My last dose drop on Feb.9th did not change anything.

[Mittenraised]

9 hours ago, Jeppe said:

Glad to tell you about slightly better sleeping for three weeks. I keep waking up, but now I dont't have to lie awake for hours. The amount of deep sleep, unfortunately, is still under 20 min every night. My last dose drop on Feb.9th did not change anything.

I'm happy to hear your improving, however slight it may be. I am battling insomnia,  but I'm not down to your smaller dose yet. Something to look out for. It is a horrible withdrawl symptom. Keep after it and maybe wait till it levels off some before proceeding. Best of luck to you.

[Mittenraised]

How have you been doing @Jeppe? I was thinking about your sleeping difficulties as I lay here trying to doze off myself. Has it improved for you? 

[Jeppe]

Hi all. Hi M. and thanks for asking.

 

I have had flu and bronchitis, and, I am not well yet. Therefore, the sleep has been worse, too.  I sleep only 5-6 hours per night, and, after that I need to wheeze and cough a lot, so, I will be totally awake.  The very poor sleep is worsened by this medication (quetiapine 8.8 mg), of course. However, I hope that one day I will sleep freely and well.

 

Now, I am glad, however, that the latest reduction in medication only worsened the overall sleep, but did not cause any other major symptoms.

 

 

 

 

 

 

[Mittenraised]

Hi Jeppe,

 

I am sorry to hear about your health struggles. Sounds like the taper is going ok? Not sleeping well certainly doesn't help your body heal.

 

I hope it subsides soon and you get some rest and recovery. Praying for good health and rest for you. Take care, M.

[Mittenraised]

Are you feeling any better Jeppe?