My Mum has lost all light perception due to late diagnosis of GCA.
I have been tapering her Pred dose and she is currently on 20mg.
Her attitude is still outstanding - very brave and wonderful - but of course (!!!!!) a new problem confronts her - waking at 2-3 am and just lying in bed awake.
She has been getting increasingly bad sleep which has started to affect her during the day - not great when you can't see and need your wits about you. She got so disorientated in her own bedroom yesterday that she smashed her teeth into a marble fireplace (luckily not above the gum line).
We have been researching the effects of lack of light on the circadian sleep/wake cycle when people have damaged optic nerves and of course it prevents the melatonin from being released at night, although not for everyone.
We don't know if the Pred is causing the insomnia or the possible lack of melatonin.
The GP is not allowed to prescribe Melatonin and has prescribed Mirtazapine - an anti-depressant that 'may' cause drowsiness. The possible side effects sound terrifying - suicidal thoughts, impulsive actions, weight gain, serotonin syndrome etc.
I think (due to him mentioning it many times) the GP is convinced she is suffering from depression/anxiety/anger at her condition which is causing her sleep disruption but as I told him - this really is not the case - she is miraculously fine about everything.
I don't know how we can find out the real cause.
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Jeromekjerome
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Hi, i was prescribed mirtazipine for insomnia and depression about 5 months ago and didnt experience any side effects. I have pred induced insomnia and was only sleeping an average of 3/4 hours a night. Mirtazipine has meant i now get 4/5 a night although some nights i just give up on sleep.
Like you say melatonin isnt available ftom your gp, it needs to come from a consultant. Could she be referred? YBB
Can you not buy melatonin without prescription if after researching you think it will be worth a try? It's an over the counter supplement where I live (Canada).
Just a little thought to keep in mind: I was a lifelong intermittent insomniac. Since I've been taking a calcium supplement (calcium citrate or calcium hydroxyapatite capsules and a small snack) near bedtime I find I fall asleep readily and sometimes even sleep all through the night without waking!
In earlier times I took valerian a few times. It gave me an interesting and I'd say extremely refreshing night's sleep. Not for everyday use, though; useful, perhaps, to help break a bad pattern?
There may be other herbal solutions which will help. In the case of herbal supplements I'd say if they are going to work they will work right away, and probably should only be used until a healthier pattern is established. At the same time the usual bedtime routine should be followed, perhaps a warm bath, a warm drink, avoiding caffeine later in the day, that sort of thing. There may be other things to do earlier in the day to alert the body to the fact that it's morning, or afternoon, to help re-establish the circadian rhythm.
I wasn't sure, thought I'd heard something about this. Odd that the doctor "can't" prescribe it. Would have thought this condition would be one of a few for which it should be first line treatment.
It was but now it has to be a consultant prescribe it because my gp was going to do it for ne and we missed it by 2 weeks. I am desperate to give it ago as even on my good days the 4/5 hours i get is when everyone else is getting up. Wish ig was OTC here.YBB
He immediately mentioned it and 'explained' to me over the phone as if if I hadn't just mentioned it - anyway- he had it on screen and was trying to add it to her prescriptions but was blocked because it is not allowed to be prescribed specifically for sleep disorders!!!
Now that is truly strange. I looked up what melatonin is used for, in case it's a useful therapy for some unrelated problem, and I can only find that it is used for such things as re-establishing circadian rhythm, or by people on shift work, that kind of thing. It also seems to have a very good safety profile, no serious side effects have been confirmed; those that were discovered in a study were apparently equally common in the placebo group.
If it is freely available otc in a country in the thrall of big pharma, like the US, I'm completely stumped as to why it's so rigidly controlled in Europe.
Not that this rant helps you, but the RNIB may have suggestions.
P.S. If melatonin isn't available for sleep disorders, what is it available for?
Re light therapy helping the blind, elsewhere just now, forget exactly where and didn't copy, light therapy may be helpful in the totally blind provided the retina is intact. I believe that GCA affects the optic nerve, not the retina.
People with this disorder fall asleep at a different time each day. For example, you may fall asleep at 10 p.m. one day, Midnight the next day, 2 a.m. the next, etc. This most often occurs in people who are blind. Light therapy may help blind people, even if they can't perceive visible light. Studies show that light treatment may be useful in the early morning hours."
It seems to be a well known phenomena. I hope it helps. It frustrates me when doctors default to the depression solution, especially since there seems to be a lot of research out there on this subject.
My heart goes out to your wonderful mum and to her wonderful child.
A sleep clinic might be a sensible step and certainly specialist input.
Have you been in touch with RNIB? These are the sort of things they should be able to help with.
I wake in the night and lie awake for a couple of hours (if I'm lucky, more if not). I have learned to accept it and then sleep when I do get the chance.
It is possible to get precursors of melatonin OTC in the UK but none of them are the simple answers they might seem.
Unfortunately the waking (very) early mornings is par for the course with higher doses of Pred. It should get better as she decreases, but for some it hands around a lot longer than for others.
Obviously she is in a much more disadvantageous gran most, in that she can’t get up and do something to take here mind off things.
Couple of things -
perhaps she should think about taking a sleeping aid every 3rd or 4th night to help - and break the circle - but not every night otherwise p it becomes addictive ;
can she listen to an audio book or the radio - maybe she needs an Alexa in her life? If you’ve not already gone down that route. Just something to distract her, and maybe she’ll then drop back to sleep.
Your GP sounds a bit useless I’m sorry to say! Are you getting any help from RNIB or local support group?
It’s an ideal device for those less able - rather than the frivolous stuff!
My SIL got one for his late mother when she went into a care home - she was riddled with arthritis in her hands particularly- and it was a godsend for her listening to radio and watching tv.
As thing break I will replace them with interactive versions. I have listened to. Music for the first time in years as I had nothing to play it on. For the grand sum of 3.99 I have access to 50m songs on amazon and obviously having access to radio and podcasts is great. I use the reminders all the time which because a voice tells you to take say vit d, I do. 😂😂😂🙄
I haven't had chance to contact them about this latest issue, might get chance today.
I am concerned that the problem will be that the RNIB won't know enough about GCA and steroids and the doctors/ rheumatologist won't know enough about the blind.
No you’re right there - RNIB are maybe used to simpler reasons for sight loss and more use on the practical side of things. And are less knowledgeable about the side effects of Pred which is what this is primarily.
Hi what time does your mum take her pred dose ? When I started on pred I was taking it at 9 a.m as that’s when I got the first prescription and I couldn’t get a decent amount of sleep at all, and felt dreadful shaky and unsteady till afternoon. Now I take it about 4am with a sachet yoghurt and then go back to sleep. I don’t always go straight off but even with waking and taking meds I’m still getting better quality sleep
If you just want to switch from morning to evening you could move to earlier in the morning and then take a morning dose and a late evening dose the same day. That one day with extra won't hurt - she may have a better day as a result though that is more likely with PMR symptoms than with GCA I suppose.
Hi I was worried at first about changing the time but found it ok to just take it earlier. I don’t set an alarm but just take omeprazole when I get up to the loo in the night and then pred with a sachet yoghurt when I next wake which is usually between 4 am and 5.30. Then I can get some/ probably my best sleep till about 9 a.m prior to this change I was up most of the night and so shaky in the day I felt dreadful, hope this helps
Alot of people have this waking time at the higher doses and may be awake for an hour or two.
It can be because the cortisol levels disturb sleep . It can be that it's a time in the night that the nervous system involved in rest and digest jobs struggles with maintaining sleep as well , especially if you have a sudden pain , a quick dip in blood pressure and it then affects your heart rate or temperature.
This sleep disturbance if it causes daytime disorientation and possible falls needs to be helped as soon as possible and reported to the GP.
They can prescribe medication like those discussed above or Amytriptyline if these drugs are suitable for your Mother with her other health needs.
Some people receive Antihistamines or Anticonvulsants to help sleep as well , it depends on what is suitable for the person and what works , it can take trial and error to get the right thing.
You can't buy melatonin or get it prescribed easily in the UK but it is available in the US , although any natural sleep aids need to be checked in with the Doctor to see that is appropriate for your mother's needs and to make sure you do not have a dose that is too high and builds up in the system causing it's own issues.
Having more fluids in the day , especially having a quick drink of cool water before getting up from bed or a chair or if she wakes and feels uneasy in the night helps reduce the possibility of dizziness , falling or queasiness of disturbed sleep.
Eating lighter in the evening , taking a multi vitamin and her Vitamin D and possibly Omega 3 can help improve sleep .
Encourage her to have a snooze in the day if she doesn't have one yet . In the early days on high doses because our sleep can be disturbed at night it is good to have a sleep when we need it for an hour not just when we think we should.
Making the bed as comfortable as possible , not too hot or cold with extra pillows or cushions to help take pressure of the shoulder , neck or any painful joints helps improve sleep. Sometimes raising the feet on a pillow also helps stop sleep disturbance if it is caused by the nervous system , nerve pain or circulation.
Remind her just to rest until she drops back off to sleep at night in a comfy position . Even if we aren't asleep keeping our body relaxed still helps us reduce our pain and get rest so that the disturbance itself causes us less Fatigue the next day. If she finds comfort in it having access to quiet relaxing music is good if she finds it helps her go to sleep , but it's best not to be tempted to do to much , sit up too long , or turn on lights unless she has to move from bed or turn on TV or a radio as these can stimulate you to stay awake.
She's also just getting used to the change in vision , and, if she is brave as you say , she is probably still trying to " Carry On" but making some changes might help . Learning some new coping , slower techniques to do everyday things will also help prevent falls , pain or disorientation issues. Tell her it's not age or weakness , you know a 48 year old on the forum that has to do the same too .
You might also want to look around the home and see if some adjustments can be made to empty floor space and easy paths through rooms to walk when tired or at night to make things simpler. Again , another thing that has helped me.
Hello , I too have experienced serious sleep issues, mood changes, extreme unprovocated anger issues and depressive states. I have been sliding down from 80 mg pred to now 8 mg.......... My opinion is that these are transitory phases and wane off slowly. There is no point in adding on drugs with other side effects unless absolutely necessary. I have noted that deep breathing especially the yoga way helps somewhat in stabilising oneself in these difficult phases. Hope your mother is blessed with quiet sleep soon !
My mum lost her sight due to late diagnosis of GCA as well. Not a year anniversary quite yet and I know sleep pattern wasn’t great. I will get back to you with what other sleep meds she is on. I know not every night is great but it’s much better than it was. I just wish there was some hope of getting even a small % of sight back.
I have read about several studies where other conditions that destroy the optic nerve can respond to gene therapy and restore sight. I think it is just a matter of time until vision loss from GCA has such a treatment
Seeing another reply to you, we also got mum a treadmill, which is small and foldable, but is just right for walking for 10-20 mins, esp in the cold winter months when it’s harder to get out.
Might your mum also not be able to the things she used to to get physically tired. Some gentle exercise in the afternoon or early evening might help. Lack of sleep makes you feel tired and make it hard to make the effort to exercise but it can help. Could you do something together
Is it possible that a SAD (seasonal affective disorder) light could help? They are very bright so I wonder if your Mum's brain might register it. Good Luck x
Hi. My mum is totally blind due to late diagnosis of GCA. She’s not sleeping well at all. We were told it’s very common re circadian since body doesn’t know what time it is. I guess it’s like jet lag. We’ve told mum to try sleep whenever she feels like it ( she is retired) we were wondering if there was a sleeping tablet that she could take. 🙁
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