Promethazine for insomnia

[Coppernob]

Has anyone used promethazine for insomnia? At what dose? Any good?

I tried one dose, as recommended, at 20mg. Slept like a baby. But was a zombie all the next day. 10mg didn't keep me asleep.

[lupus-support1 Administrator]

Hi there & Welcome!

In the interests of your privacy, it would be a good idea to change your photograph to something that doesn’t identify you.

Without wishing to pry, getting to the root cause of your insomnia would be a better option in the long term. I would advise you to see a specialist to help you in the meantime.

This must be a very distressing situation for you and I hope you are able to resolve it sooner rather than later.

With good wishes,

Ros

[Coppernob in reply to lupus-support1]

The root cause of my insomnia is Sjogrens. Nothing to be done about it. Unless perhaps I can get access to more specialist autoimmune care than is available locally.

[lupus-support1 Administrator in reply to Coppernob]

Sjogren’s can be treated and should be treated by a rheumatologist. As an autoimmune condition, there is no cure, but symptoms can be alleviated.

Sleeping pills is not a long term solution. You will become dependent and therefore not a solution.

I may be wrong, but it sounds as if you are also depressed and this is understandable if you feel hopeless. I would encourage you to go to your doctor and ask to see a specialist.

There is every good reason to feel hopeful because there are many options for you to deal with Sjogren’s. Talking with other people and/or a therapist might also be of help. Perhaps find a group near to where you live?

With good wishes,

Ros

[Coppernob in reply to lupus-support1]

Rheumy is leaving next month. Along with another. No pending appointments. And no replacements for consultants. Two F2F rheumy appts in 5 years. Hence what I said about seeking advanced specialist autoimmune care. Please don't make assumptions about my mental health. I am not depressed or desperate but certainly hugely frustrated, and therefore taking action.

[lupus-support1 Administrator in reply to Coppernob]

I am making no assumptions but trying to help you help yourself. I don't know anyone, including myself, who have not felt a wide range of emotions. You don't have to be so defensive: we are here to help. You have been badly let down by your doctors. However, you need to ask why you are not sleeping and if you are sleep deprived, this makes worse having to cope with Sjogren's.

When I was having a very bad time, sleep deprived, I did have a positive experience with an aromatherapist - I slept for the entire hour, every week with her. Out like a light & good quality sleep!

Looking back, what made me sleep wasn't magic. Create the right atmosphere for sleep. There's lots of advice out there on how to do this, including putting away all distractions, warm bath, low lights, lovely scent, soothing music or someone's voice etc I am no expert on this.

I am not making any recommendations for an alternative therapist because one has to be very careful re: qualifications but sometimes your GP surgery or hospital may have information. Other people swear by acupuncture. Whatever it is: if it cost lots of money, don't do it & only use recommendations from reliable sources! People here know I rarely refer to alternative therapies because their qualifications are not equivalent to medical qualifications.

If there is a support group in your area, they may be able to give you advice, or contact Sjogren's organisations and ask them for advice given your situation. Local support groups are great because everyone understands what is being said by one another. As I don't know where you live, or which country, I cannot direct you to a particular organisation.

Sleeping tablets may be a fix in the short term, but will not address your situation in the long term and may lead to dependency which is not a helpful route to take.

With good wishes,

Ros

[HollyHeski Administrator in reply to Coppernob]

Hi, intrigued to why sjogrens is causing your insomnia?Also hear your frustration not having a specialist to talk to.

I also have sjogrens and not seen the specialist since diagnoses!

Think we can compare here, as well as use useful tips by others getting not just sleep but quality sleep.

[Coppernob in reply to HollyHeski]

Sjogrens is known to be associated with sleep disorders. See BSSA info.

[ATVMWF in reply to Coppernob]

Hi Coppernob,

I suffer from Sjogrens too and am also sleep deprived, lucky to get 3-4 hours a night and it takes its toll on you both mentally and physically. It's bad enough trying to get on with your life with SS and other A.I. problems without not sleeping. I also know how frustrated you feel, especially as it is almost impossible to get an appointment with a rheumatologist. I haven't managed to see a consultant yet in the 3 years since being diagnosed (5 appts having been cancelled die to Covid and staff sickness)

On the sleep problems my G.P. prescribe me Amitriptyline 10mg. I managed to get about 5 hours sleep most nights but they left me with a headache which wore off after a couple of hours in the morning. It's a balance isn't it, lack of sleep, or dull throbbing headache...by the way I tried the Melatonin and it did nothing for me but it is worth giving it a shot.

As for feeling depressed, well you may feel down, as anybody would be who isn't getting regular sleep but that is different from actually being medically depressed. Only you and your doctor will know which is which.

I think, like me, if the doctors actually gave some attention to Sjogrens sufferers and listened to them, rather than just brushing them off because there are no treatments, then SS sufferers might feel validated and then honest conversations about what it is like to suffer this awful disease without much support.

I hope you get some sleep soon.

ATVMWF

[Coppernob in reply to ATVMWF]

I gather there is a connective tissues disorders service at the Royal Free in London. With MDT teams. I'm going to try to get referred to that. So sick of sub-standard, and mostly absent care for Sjogrens/autoimmune generally.

[Momba49 in reply to Coppernob]

i too have sjogrens and did not know that it could be cause to my chronic insomnia. I try not to take sleep aids but sometimes have too. I am currently trying CALM ( magnesium product) and sometimes listening to ASMR “stories” help

[soulspirit in reply to Coppernob]

My Mum is 82 and suffers with RA and Sjogrens. It was a long time getting it diagnosed too. So she only found out 15 yrs ago that is what was causing lots of autoimmune issues and not just RA. She was also more frustrated and definitely not depressed. She has just had to learn how to manage it and attend specialist appointments etc.

[soulspirit in reply to lupus-support1]

Hi Coppernob I have Fibromyalgia and insomnia is a big part of that too. I take 25mg enough to get me off to sleep. Just have to be wary of using other sedating medications with it. I always wake up through the night but as long as I can go back to sleep I cope.

[Coppernob in reply to soulspirit]

What do you take? 25mg of promethazine? Or something else?

[HollyHeski Administrator]

I've not gone down the route of drugs simply as I need to be with it during the day.Do you know why you are not sleeping? I'm sure you have tried many remedies, for me, I have pain in my arms (TOS), my body has now got adjusted to my sleep pattern. Although still catches up with me at times!

Good suggestion from Ros re picture, sadly we all have to play extra safe on the Internet.

[MaryF Administrator]

Not had that one, years ago I tried another, but I have dire drug allergies, now prescribed Melatonin and also use a Magnesium sleep lotion which works for me to a certain extent. Also my poor thyroid function and low B12 did not help with insomnia, and I did improve treating those. MaryF

[Coppernob in reply to MaryF]

I have tried both melatonin and magnesium cream. The melatonin might bye worth revisiting. The cream had zero effect.

[MaryF Administrator in reply to Coppernob]

I do apply a lot of that cream, have you done detailed private testing to rule out Thyroid and B12 issues? Unfortunately they are both often missed with standard NHS testing. Also making sure histamine is not out of control also helps, I get terrible problems with allergy and mast cell, I found taking the correct probiotic, (all checked with my medical doctors) has helped with that a little and also following a good sleep routine, I sympathize as insomnia does make you feel really awful when it drags on. So many get to told they have Fibro, when actually there are more issues going on. As Admins we will ALL endeavour to help you as best we can, and feeling low can add to feeling bad at night. I really hope you get to the bottom of it and get some relief. MaryF

[Coppernob in reply to MaryF]

Have been treating thyroid for decades. Also inject B12.

[MaryF Administrator in reply to Coppernob]

Great, I think you may have told me that in the past, but I a re training my noddle after a serious TBI! I am currently working on this: pubmed.ncbi.nlm.nih.gov/208... Some strains or probiotics are specific to helping with this. MaryF