Does anyone (particularly those with Cerebral Vasculitis) find it hard to stay sleep and do you have any tips?

[milliewin]

I seem to be able to get to sleep, as I am so exhausted, but then wake every few hours. My brain doesn't seem to switch off anymore and would love to find out how others cope?

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I'm having considerable difficulty getting to and remaining asleep at the moment. I have WG but have recently been diagnosed with a small brain lesion and coincidentally developed chronic headaches although the esteemed Dr Jayne et al. are convinced its not CV or linked to the abnormality. I however, remain unconvinced.

Whilst the pain is often directly responsible for stopping me falling asleep and it seems, waking me up soon after, despite the use of prescribed sleeping pills (Zopiclone), I'm convinced the primary cause of the insomnia is simply stress. Dealing with an incurable, life-threatening illness on an everyday basis is in itself challenging when we're feeling relatively well but when combined with physical battles against the disease and with the emotional cost due to the life-changing circumstances we find ourselves in, it's no wonder we struggle to cope.

Insomnia is a classic symptom of depression and no-one should ever be frightened or ashamed to admit they need help to deal with their mental health. There's no such thing as a physical-only disease and clinicians who treat illness rather than the patient need a change of career.

For someone like me with a mind as tangential as particles in a Large Hadron Collider, it's more than a challenge to shut my thoughts down even without the damned disease chanting with the crowd. Something patently obvious I'm sure from these overly verbose replies! Living in Cumbria ought to be helpful (no shortage of sheep to count or 'babbling brooks'!) but the real problem is in what lies beneath the inability to switch off.

Many of the medicines we're subscribed for vasculitis have insomniacal side effects. When on Prednisolone, if I forgot first thing and took it late in the day I'd be assured of a restless body let alone, disturbed sleep. Peripheral neuropathy is often associated with vasculitis so proper pain management is essential in such cases.

For some, 'chemical' aids such as the above (which can be addictive) or low-dose anti-depressant medicines such as Nortriptylene are successful and alternatives such as Melatonin or 'Kalms' work well for some people. Strategies such as not staying in bed if you're awake for more than 15 minutes (get up and read in a different environment), making a warm, milky drink and

There are lots of suggested methods to help sleep quality including the avoidance of stimulatory food, drink and activities before bedtime and having a good quality mattress (I spent what to me was a small fortune on one and it made a huge difference) in a comfortable bedroom environment which is your quiet sanctuary is ideal. Obvious but easier said than done perhaps.

Learning to breathe properly i.e. diapragmatically and meditative practices, such as yoga, Mindfulness, NLP or some soothing relaxation music or sounds of the seashore, may all help to quieten the mind before falling asleep.

I'm sure all of the above is pretty obvious but easier said than done when you're wide awake at 3 a.m. but without doubt, feeling sick and tired of being sick and tired is in itself debilitating and I'm a strong believer that sleep plays a huge part in the role of healing.

Healthy and sleepy wishes.

Martin

[BronteM]

Before I was diagnosed ( January 12) I was having problems because I was so uncomfortable and could not find any way of lying that helped and allowed me to sleep sensibly. My problem is large vessel arteritis, so I had pins and needles in my arms that woke me several times each night, and if they missed out, the cramp got me. And then there were all the night sweats!! Now I think it is the prednisolone that is giving me insomnia, though it is improving slowly as my dose reduces. But now I have a diagnosis I can take a more practical approach and worry a bit less. So my guidelines are -

No tea, coffee, cola etc after 5 p.m.

A mug of camomile tea when I go to bed

A little clip on light so that I can sit up and read without disturbing my husband. (Warning, I am acquiring a serious Kindle habit as I can buy books at 3 a.m when I am bored)

A tiny flat radio and a pillow speaker that I put under my pillow as the World Service is a great way of sending me back to sleep. You can also plug earphones directly into your bedside radio, but I got tied up in the cords too often! Try borrowing off friends /family to find what suits you.

Some Zopiclone pills that I take every 10 days or so if I have a run of bad nights. Just knowing I have them to fall back on seems to be enough.

A friend has also suggested having a pencil and note book so that I can write down all those 'middle of the night thoughts' and stop worrying about them too. I find that this hasn't worked for me, but does work for other people.

Hope this helps! BronteM

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Some great advice there BronteM. I especially like listening to the radio at night and the notepad idea is brilliant for 'unloading'.

Healthy healing wishes to you both.

[milliewin]

Hi there, have finally got a new PC sorted, mine died shortly after asking question so apologies! Yes some great ideas but sadly tried most of them without success! However I am just trying the relaxing sounds of the seashore so you never know?

With me I seem to spend the night worrying about things I have to do the next day as the brain damaged I suffered has left me with problems of planning, processing and organising! I have tried writing this down through the many waking hours of the night but this didn't help, I have tried the herbal teas etc but no luck yet? Also i suffer rfom extreme discomfort and restless leg on my left side, which is the side I lost the use of when my CV flared? I now have to wear a boot day and night to help with some footdrop from the vasculiits. However I don't think that's the problem?

Also tried Amitriptyline at a dose of upto 50mg which is supposed to help with sleep but have just weaned myself of it as it didn't help?

However thanks for all your suggestions and best wishes for a good night's sleep to you both?

Sarah