sleep deprivation

[Sandra600]

Hi I am having a very bad time atm my sleep is terrible with bad dreams, migraines and neck and shoulder pain. I have been having nights like this occasionally for years but now it is all the time and I can’t cope. I am exhausted all day and the neck pain is bad. If I take a triptan the migraine gets a bit better but always comes back during the night. I never sleep well but this is on another level. My husband was diagnosed with cancer just before Christmas and I need to support him but I can’t cope and I don’t know what to do. I don’t drink alcohol or caffeine. Any suggestions would be gratefully received

[Deeb1764]

my sleep was horrendous a few weeks ago and had been for months. I tried a weeks trial with Shuteye so I got reports on what was happening whilst I slept and tips. So lots of vi is up the nose as have sleep apnea, soothing ocean sounds i de used on to send me to sleep and different positions tried. I have gone from 4 to 6 hrs sleep now. It was like a course on what was going on around me too at night ie hubby cats etc.

Stress also causes so many issues too so maybe talk to Macmillan cancer as they are there for family too and helped me when my mum was going thro it.

Reach out if you feel you can as it will help to ver time 🥰

[Blearyeyed]

Have you spoken to your GP about this , including the additional Stress you are under currently.Depending on what medications you are on , and whether you have low blood pressure or heart rate , you could try a Magnesium supplement after your evening meal (Nutrition Geeks Magnesium Glycinate 3 in 1) is a good option and can help sleep , headaches and general night pain.

You may benefit from a daily medication for Migraine which would also help reduce attacks affecting your sleep. Candesartan is often a good option at low doses and it can help with pain and palpitations as well.

Keeping well hydrated during the day and increasing foods containing Vitamin B 12 , Folates, Vitamin C and Vitamin D can help Migraine and Insomnia.

You may find that a nightly medication , at least for a short term might help. Many people use Amitriptyline, although I found it made my Migraines worse, but it could be worth a trial.

I use a nightly antihistamine which also seems to improve my general sensitivity and pain during the day.

If you aren't already on any form of pain medication for Fibromyalgia one of the antidepressants that are also used for Migraine and Chronic Pain relief might also reduce rebound pain at night.

It's worth having your heart rate and blood pressure checked as some people find Migraine pain and insomnia can be caused by swings in these and some people find relief from low dose Beta blockers ( not in my case , but again it all depends on the root cause of the problem as to which things can work and can take a lot of trial and error).

It's good to look at your bedtime routine and improve any things in it that you can spot.

Winding down properly and turning off all devices like phone , TV and computers an hour before bed ( and not answering texts past a certain time) and removing things with blue light from the room helps a lot.

Try breathing and muscle relaxation techniques half an hour before settling to sleep.

Cushion both your head and shoulders on pillows so the upper body is in a more raised position , this helps reduce heart rate triggered headaches.

Remove any strong smelling things like perfumes , pot pourri or candles and oils from your room as although many of these can be relaxing in a short amount of you continue to smell certain things for more than 30 minutes, even lavender, it can cause the heart rate to increase again and bring on headaches.

Keep your room at a steady " Goldilocks " temperature, not too hot , not too cold.

Block out light .

Ask other household members to keep the noise down after you have gone to relax and ask friends and family not to call or text you after a certain time unless it's an emergency to help reduce you being tempted to use your phone or getting distracted from your sleep routine.

Don't to very active exercise for two hours before bed , it stimulates the nervous system and prevents sleep .

Smoking or Alcohol is also stimulating and can affect sleep and cause night head pain.

Find someone in a local support group for carers of people with cancer , or any friends or family to talk through your anxieties with and make sure people realise you are finding it hard to cope. Ask for help , even if it's just someone to call when you need it, or someone to help with chores or shopping. Let your GP know that you are struggling with Stress in your new role as a carer and see if they can refer you to a Chronic Pain or Stress management course.

Take care and I hope things improve soon, Bee

[CheetieCat]

Hi, you've had lots of good advice so far and I definitely agree with trying a preventative daily treatment for migraine, it was a total game changer for me. Also something as small as changing your pillows or adding in a travel pillow to keep your neck in line could be helpful. Magnesium oil or lotion massaged into your neck and shoulders at bedtime can help with the neck pain too. Hope you get some relief soon x

[Sandra600]

Thank you all for replying, I should have said originally that I have tried many medications over the last 15 years for migraine and fibromyalgia including amitriptyline, nortriptyline, trazodone, gabapentin, tramadol, duloxetine, candersartan, ajovy, Botox, and supplements such as vitamin b6 and magnesium. Nothing has helped or I couldn’t tolerate the side effects. I having been going to a migraine clinic for over 2 years and nothing they have tried has helped and my next appointment is a phone appointment in June.

[Blearyeyed in reply to Sandra600]

Have they ruled out Cluster Headaches rather than Migraines alone.I have a full spectrum of Migraines , including Vascular, Vestibular and Alice in Wonderland Syndrome but I also get Hemicrania Continua , a one sided migraine which reacts to activity and only improves using Indomethacin, and Cluster Headaches.

Since the Neurologist confirmed this I have been prescribed supplemental oxygen which I use daily and if an attack begins , I also got prescribed an NHS medical grade Vagus Nerve Stimulator from Gammacore which I use once daily and before attacks begin these combined with B12 injections ( as I am B12 Deficienct) have turned the tables for me.

But unfortunately, at the moment oxygen is only supplied for Cluster Headaches even though I've found it cuts my Migraines and Fibro pain by as much as 40% and is a good sleep aid in small doses.

It might be worth discussing Indomethacin and assessment for Cluster Headaches with your Migraine Clinic if you haven't already , and seeing if they provide Gammacore stimulators for Chronic Migraine.

If you could ring now and ask if you could try these before June pointing out you could discuss how well they have worked for you at the next appointment.

[Astonvilla68]

i’m so sorry that you have to go through this. My worse symptoms of Fibro were headaches and back and neck pain. I have changed two things for the headaches. I take fever a few 400 mg a good quality one I now have no headaches or migraines, and it’s all natural, no side-effects for my fibro I am on LDN Google it 👍. I am four weeks in and already noticing a difference. I have gone from 40 minutes of deep sleep per night to an average of 4 to 5 hours feeling so much better if you need any more info, feel free to message back. Also, I have learned from the neurologist that if you take triptan for headaches more than twice a week, they will be causing you more headaches. I hope this helps.

6 months supply

[Sandra600 in reply to Astonvilla68]

Thanks for replying, I am glad feverfew has worked for you I have looked into it before but the side effects profile put me off as I have acid reflux, oesophageal dysmotility and ibs.

I’m also glad the LDN is helping you I believe it can help migraines too. I have looked into it before, do you get it from Dicksons? My cfs is bad so I have got no energy but if it eases off I might follow up on it. It’s all I can do to get through the day atm

The neurologist I see has told me to take no more than 6 triptans a month but I actually take between 7 and 12, this is the minimum I can take to have even a minimal quality of life as I barely leave the house as it is.

[Astonvilla68 in reply to Sandra600]

Good morning please please please do not take this the wrong way. I don’t say it lightly but I guess you need to change your mindset. This is a very important part of fibro. It’s good to challenge yourself sensibly, more exercise. Nothing crazy, just know your own limits to a degree Slightly push yourself, it will help with the fatigue to get some fresh air. Just a gentle walk to start with. I too have acid reflex and IBS and the fever view does not cause me any issues. In fact it’s a lot better than any of the other drugs you can take for headaches And it’s 100% natural. I do get my LDN the chemist that you mentioned they are great what I have noticed is a strong lift in mood and I don’t feel as tired not fatigued which is the first time in many years. I have also noticed on my sleep app I am sleeping far better than before . please don’t hate me for saying exercise but it is key. It’s so important get the sun on your face, breathe the air in little by little you can make improvements at least. I hope you do give it time make it a challenge and break through, and I hope it brings you a more comfortable happier, better less pain, less fatigue life 🙏

[Sandra600 in reply to Astonvilla68]

Thank you I cannot exercise as I have me/cfs and chronic migraine and movement makes things worse. As for getting the sun on my face I have to avoid it because it is the worst trigger for my migraines with dizziness so bad I can’t walk without help

[Astonvilla68 in reply to Sandra600]

I’m sorry to hear of your struggles and I hope you find some relief 🙏

[Sandra600 in reply to Astonvilla68]

Thank you

[Onedaymore1]

Hi I have Fibromyalgia & formally diagnosed in 2018. I went to a pain clinic last June & the physio was believing and knowledgeable about Fibromyalgia. He was very thorough with me as well. He asked if I dream & can I remember them & do I snore? I answered yes. He asked my GP to arrange an overnight sleep monitoring test. It a gadget I picked up from hospital and I used it for a night & then took it back to hospital. I’ve now been diagnosed with very severe sleep apnea (for me I was stopping breathing 45.5 times PER Hour 😳. No wonder I have been like a zombie. I’ve now got a CPAP air mask machine to use each night & been using for a couple of weeks & an app that monitors my sleep. I’ve gone down to under 10 apnea’s an hour I’m very thankful for that Physio now. I’m still getting used to sleeping with my CPAP Therapy & everyone’s experience is different around this.

It may be worth asking GP or Rheumatologist if they can arrange a sleep study.

I’m not quite sure why it’s not something that is investigated for all Fibro /CFE/ME patients.

Hope you get answers soon 🙏

[Sandra600 in reply to Onedaymore1]

Thank you I will contact my GP about this

[Onedaymore1 in reply to Sandra600]

you just never know. FMS is such a complex puzzle to try to work ou x

[Yassytina FMA UK Volunteer]

Hello, sorry too read about your husband and on top your awful sleeping pattern which from recent experience you feel so out of sorts and energy levels become low. I’ve tried breathing exercises and sleep music , get up and make a milky drink but no caffeine, walk around abit , I have found stress is properly playing a part and if I’m not switching off I know I’m in for a rough night. I have for awhile now used a company based in Somerset called Herbs on the hill, they do an amazing head balm which I’m never without,they even use their products with the NHS I read . Look them up . I hope your doctor is being supportive with you and good advice from Deeb1764 about chatting too Macmillan. Take care xx

[Sandra600 in reply to Yassytina]

Thank you I will look this up x

[Albionrfx]

Hi Sandra600, sorry to hear about your insomnia and also about your husband’s diagnosis of cancer. My sleep has always been bad for so many reasons. Finally I’m getting some help with a 12 week course of sleep mindfulness. It’s very interesting as it helps to learn about sleep hygiene, the buffer which is the hour before we go to sleep, what do we do during that that hour can affect a good night sleep. How to work alongside of unwanted thoughts, etc…

I hope you can find some ways of finding peace, and trying to keep your joy despite the difficulties that comes with living with Fibro or caring for someone with cancer.

Sending lots of love and positive energy your way, 🦋🌷

Albionrfx

[Sandra600 in reply to Albionrfx]

Thank you who are you do the course with? X

[Albionrfx in reply to Sandra600]

I’m in the Uk.

The full title of the programme is Mindfulness-Based Therapy for Insomnia (MBTI) and can benefit populations that either do or don’t have a clinically diagnosed sleep disorder.

I was offered the course but check if there is anything similar in your area.

Take care, 🦋

[Sandra600 in reply to Albionrfx]

Thank you x

[Smilesalot]

Hi sweetie,I'm totally sorry for situation you're in.

I get night headaches with neck and shoulder pain. Nothing helps. I rarely sleep just dose lightly off and on. It continues into the day.

I found putting a light weight scarf gently around my neck and shoulders helps.

I'm doing it now but as I'm tense the pain has returned just not as bad. But it will be back about 9 p.m. .

I wish I had something substantial to advise but my sympathy and hugs is it.

Hugs🤗🤗🤗🤗🤗🤗🤗🤗🤗😍Dawn x

[Sandra600 in reply to Smilesalot]

Thank you sorry you are going through this too x