Sleep & relaxation & clinical guidelines

I had a meeting with my psychiatrist yesterday and have agreed to taper me off my meds (Quetiapine) for the second time. 🤗 and they are hoping to discharge me in the spring. Because I had a psychosis relapse a year ago (and 2 years after PPP) I have been now told that I need to have careful sleep & relaxation management for the rest of my life. I've been prescribed Sominex and a sleeping tablet if I need them.

I just thought it was worth making you aware that if you do suffer from sleep problems you need to demand help from your GP as soon as possible - I went to two GPs when I was going into hypomania after having poor sleep and being under chronic stress only to have sleeping tablets turned down because they were "addictive". Two days later I was back in the psychiatric ward under section.

I'd really like to have this as a national standard of care for anyone who has had PPP in the UK (and is therefore at risk of having psychosis again) - does anyone have any ideas on how to do this? Would it be NICE guidelines?

7 Replies

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  • Hi bluestarlady, I don't know how to make that a national guideline but I'm sure somebody will get back to you about it. I just wanted to say that I agree that managing sleep and stress levels feel really important to me since I had PP. The best way of doing that will be different for everyone, but it's really important that professionals recognise how important it is. When I was first developing PP I told my community midwife that I'd been awake all night totally unable to sleep at all and she just said "poor Tracey" without it triggering any real concern for her.

    Good luck with coming off your medication.

    Tracey x

  • Hi Bluestarlady. What an interesting point. There is from what little I know, I think, something in NICE guidelines stating that expectant/new mothers should get advice for sleep problems and if more serious then be offered medication. But I'm not sure what's out there/recommended in terms of people who've already had PPP. Plus I don't think any of this is mandatory so experiences could differ depending on how any guidance is implemented locallly? But there does seem to be a lot potentially happening in UK at the mo.The government announced their increased commitment to improving mental health services etc for mums in January. There are people on here who will know a lot more than me about all that!! But sounds like could be a key time to be heard. I love your enthusiasm to brimg about changes! X

  • Hi bluestarlady

    Thanks for coming back to the forum and great news about your planned meds reductions. It's such a milestone isn't it.

    I'm sorry to hear that things have been hard but it sounds like you got some good support from professionals in the end.

    I don't know how these things work either and would also imagine that, sadly, it depends on where you live, what specialist input you have and even the individual doctor or midwife etc who you see. I too hope that with the recent funding announcement and other things which seem to be picking up pace (there's going to be a community perinatal service for where I live next month, tho I've had my children now!)... I hope things are changing for the better.

    Not sure it would be relevant in your case but the 2nd opinion service offered by APP through Ian Jones should also flag key areas and triggers/ support needs including meds for sleep etc. Here's the link if it's useful for anyone reading. I found it absolutely invaluable in my 2nd pregnancy , and found that professionals involved locally really sat up and listened when they saw it all written down from him!

    app-network.org/what-is-pp/...

    Take care, all the best, xx

  • I had my psychosis 36 years ago, and I always knew afterward that I needed to carefully guard my sleep.

    Before menopause, I found that a cup of warm milk helped me get back to sleep. That all changed with menopause, and I now have a prescription for Lunesta, (generic is eszopiclone) which works well for me.

    My doctor advised me to only take it every 3rd night, so I would not become dependent on a sleep aid. When I do time zone travel for work, (like 12 hours time zone difference), I take it every night. But when I get back to my home, I taper off as soon as possible.

  • Thanks for your reply and advice. I'm not quite at menopause age (I'm 40) but I thought that was really interesting to hear that I may need to be ultra cautious when this happens. I know that I don't sleep well just before my period (no idea why) so I'm going to have to be careful each month too. Fortunately I don't do long-haul travel (only to Europe very occasionally). I just wish I had been warned about the sleep issue in my follow-up care plan.

  • Hi All

    Just seeing these posts mentioning possible relapse / risk around the time of the menopause etc, and I thought people may find it helpful to read a recently added 'frequently asked question' on our website: 'Am I likely to have an episode of psychiatric illness at other times?' app-network.org/what-is-pp/...

    I do find sleep is key too in staying well, luckily I've always been able to sleep well, and only struggled with it when I had PP but I know how awful whenever I do rarely have a disturbed night. I agree with everyone - self care is so important, doing things that keep us well!

    Take care all X

  • Hi bluestar lady,

    How horrible that you went through another psychosis and I can see your reasoning that with the right care it may have been preventable.

    One thing that struck me about your last comment is that you mention that you struggle to sleep around the time of your period. I wonder how common this is for other women? Does anyone else find this? It has certainly been the case for me since PP

    One thing to look at and rule out could be Premenstrual Dysphoric Disorder (PMDD)

    You may feel that it doesn't apply to you which would be great but I just decided to post in case, as your monthly sleep troubles rang a bell with me. The treatment for PMDS differs from treatment for depression in that medication is only given for the two weeks prior to a period. Below in an excerpt I copied from WebMD :-

    Premenstrual dysphoric disorder, or PMDD, is a severe form of premenstrual syndrome (PMS). The symptoms of PMDD are similar to those of PMS but are severe enough to interfere with work, social activities, and relationships.

    How Common Is PMDD?

    *************

    PMDD occurs in 2% to 10% of menstruating women. Women with a personal or family history of depression or postpartum depression are at greater risk for developing PMDD.

    *************

    What Causes PMDD?

    As with PMS, the exact cause of PMDD is not known. Most researchers, however, believe PMDD is brought about by the hormonal changes related to the menstrual cycle. Recent studies have shown a connection between PMDD and low levels of serotonin, a chemical in the brain that helps transmit nerve signals. Certain brain cells that use serotonin as a messenger are involved in controlling mood, attention, sleep, and pain. Therefore, chronic changes in serotonin levels can lead to PMDD symptoms.

    What Are the Symptoms of PMDD?

    The symptoms of PMDD can include any of the following:

    •Mood swings

    •Depressed mood or feelings of hopelessness

    •Marked anger, increased interpersonal conflicts

    •Tension and anxiety

    •Irritability

    •Decreased interest in usual activities

    •Difficulty concentrating

    •Fatigue

    •Change in appetite

    •Feeling out of control or overwhelmed

    •Sleep problems

    •Physical problems, such as bloating, breast tenderness, swelling, headaches, joint or muscle pain.

    How Is PMDD Diagnosed?

    If you have any of the above listed PMDD symptoms, you should see your doctor. He or she will review your symptoms and medical history and give you a thorough medical exam. Psychiatric evaluation may also be included.

    Before a doctor makes a diagnosis of PMDD, he or she will rule out other emotional problems, such as depression or panic disorder, as the cause of the symptoms. In addition, underlying medical or gynecological conditions, such as endometriosis, fibroids, menopause, and hormonal problems that could account for symptoms, also must be ruled out.

    PMDD is diagnosed when at least five of the above listed symptoms (including at least one of the first four) occur for most of the time during the seven days before menstruation and go away within a few days of the start of the menstrual period. If these symptoms are present every day and do not improve with menstruation, they are unlikely due to PMDD.

    This may or may not be of some use either way I hope you stay well and have a more insightful and understanding GP from now on

    Teresa x

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