Sunshine 🌞

[jopo280886]

Hi all you lovely Lupies out there. Hope you have been enjoying the lovely weather we have been having 👍🏻 And that you are all as well as you can be 😊 I’m fairly new to this site but absolutely love all the amazing information you guys can give! I have rheumatoid arthritis , osteoporosis and Lupus with Sojgrens. I’m on an array of medications for these issues. The leflunimide seems to have helped with the joint pain and the warfarin for the clots but the side effects are horrible I literally don’t sleep I might get at least 2/3 hrs if I’m lucky I n3ed to take sleeping tabs every seconde night to get some quality sleep 😥 Do any of you lovely people know of a cure to insomnia. I take the small dose of zoplicone that really does not work for me ☹️ I have resently had exceptionally painful headaches right side of my head , thought it was going to explode so painful, I had blood shot eyes and high temp. The consultant thinks I have Artitis He wants to take a biopsy from the side of my head ,brain. I have been put on high dose of steroids as the artery they will take the biopsy from delivers o2 and blood to my brain if this is inflamed it could cause strokes n aneurism. As you can imagine I’m bit worried about it. Have any of you guys had an issue like this? And to top it all my hair is falling out at a very quick pace 😟 Not To well at the moment but i keep smiling!

Take care all of my friends keep smiling when you can!

Hugs to you all xxxx

[panda2]

Hello jopo280886,

Welcome and I hope you're able to get some answers here. You've got quite a bit on your medical plate, the very last thing you need is to be unable to sleep. There could be lots of causes -- from the steroids, to other meds, to peri or menopause..? Probably something you can't correct yourself and more likely something that needs treating -- like we need more treatments, hey?

I take 3.75mg Zopiclone as needed and find it does work for me, but only for 4 hours. That dose will not likely give a full night's sleep. Have you tried Amitriptilyne? It's been around for ages and is very safe and non-addictive (unlike Zopiclone). Some people have trouble with Amitriptilyne, but I find the low dose 10mg at about 9pm tends to work. I will wake at night for other reasons sometimes and new drug regimens always throw me off, but this is a good standby for me. A menopause specialist suggested it when I had my ovaries out, saying she had seen many many women find sleep success with it. I can vouch for this.

Hope you find the right answer for you.

Panda x

[jopo280886 in reply to panda2]

Aww thank you for your very helpful reply Panda 2 I will check with my GP re the amitriptilyne - fingers crossed! Take care xxxx

[dawnisup]

Hi jopo280886

I'm sorry to hear you have so much on your plate. Lack of sleep is a killer. I personally am on 15mg zopiclone and have been for years tho I realise I am probably in a minority here. Obviously there are times when you fall asleep standing up/with food in your mouth/cup of tea in your hand (yes have done all of these) from the extreme fatigue but that's not the same as being tired and yet awake.

Something I can recommend, at least short term, is Phernergan. It comes in tablets and liquid. Its for travel sickness and short term sleep disorders. However take my advice don't go in your usual pharmacy where you get your scripts filled as they will grill you tho god knows why. When asked you want it for travel sickness; they tend to get a bit weird if you mention sleep disorders. You can ask your gp for it on script I believe (if you don't have to pay for them) otherwise it's cheaper to buy it.

I did all the relaxation stuff and yes it relaxes me but never to the point of sleep if I'm genuinely having an insomnia phase.

Also I don't know if we are allowed to mention the "green" helper that is THC but I can recommend that for just about everything really.

Good luck and happy snoozing.

Hugs, Dawn.

[jopo280886 in reply to dawnisup]

Aww thanks Dawn, I have thought about doubling my Zopiclone on a more regular basis but tends to give me a headache 🤕 I will definitely ask my GP re phernergan haven’t heard of it but worth a try if it helps me sleep! I did try the CBD (is the THC different?) oil from Holland n Barrett tasted awful and did no good what so ever 😟 People say - but why can’t you sleep? Try relaxation, hot milk and so on.... unfortunately I’ve exhausted all the usual remedies to no avail. I can literally be awake the whole night dozing on and off throughout the next day feeling awful and sore. Hopefully I’ll get something that works! Hope this finds you well. Take care

Big hugs xxxx

[leslieliesel]

I have no words of wisdom or advice...I just want you to know that I care

xxlieselleslie

[jopo280886]

Aww thanx that means a lot!! 😘😘 xx

[Paul_Howard Partner LUPUS UK]

Hi jopo280886 ,

Have you discussed your insomnia with your GP or consultant? I'm guessing you have if you are taking sleeping tablets. It may be worth reviewing your sleep hygiene to see if you have any habits which may be making it more difficult for you to maintain a regular sleep pattern. You can read about this at nhs.uk/live-well/sleep-and-...

We recently published an article about lupus headaches which has a lot of information and advice that you may also find helpful - lupusuk.org.uk/headaches-an...

We also have an article about hair loss in lupus which may be of interest to you - lupusuk.org.uk/coping-with-...

[jopo280886]

Thanks Paul for taking the time to reply, much appreciated! Also, thank you for the links re headaches and insomnia. I have discussed these issues with my GP and consultant hence my sleeping tabs prescription. I have also tried relaxation techniques and mindfulness this helps to relax me but not the sleep side of things 😔 I know this can have an impact on my health therefore I take sleeping tablets x3 times a week just to get some sleep.

Hope this finds you well Take care

Big hugs

Lesley.