Sleeping with pain

How do I help my disabled son? He gets really bad headaches at night and his body jerks all night long. I sleep next to him terrified he’s going to stop breathing so I check him all through the night. Drs won’t give him medication for pain. Says they are addictive. Excessive Panadol works but 6 months of taking 8 a day at night must be hurting his liver imo. Drs say it’s okay. He sleeps for 2 hours with the jerking movement then wakes up for Panadol. I can’t keep doing this. Sleeping 2 hours then being awake for one… sleeping for 2 hours then being awake for one… on repeat. Driving me (and him) mad. He’s 27 and gone from 44kg to 32kg through muscle wastage. Drs seem to think this is ok too. I had a great dr but he died. Then another good one who moved too far away and their clinic do not prescribe pain killers etc. Besides Panadol, I’ve tried magnesium, Valerian, passion flower, caffeine for hypnic headache, (caffeine helped the most with pain) Melatonin, cannabis oil. Maybe I’m not giving enough of each? Advice please.
(P.S. headaches are either from TMJ (grinding teeth) or gerd. Drs have not diagnosed him but he definitely has some type of colic. He can’t eat any foods that gerd patients can’t eat. I give him Eno or quick eze for that. PPI’s are not good as they rob body of magnesium so I don’t want to give those.)

Hi, I’m so sorry you and your son are dealing with this. The root of this is a medical issue so there’s only so much advice I can give… but has your son gotten treatment for what’s causing the headaches in the first place? For both teeth grinding and gerd there are many treatments available.

I would imagine the acetaminophen in Panadol would likely be bad for the liver in high dosages, but ultimately a doctor should know best. Did your dr give a reason why this isn’t the case? Do you have access to more doctors through your insurance/where you live. Doesn’t hurt to get a second opinion.

Many options. Cause of the pain: headaches. As a physiotherapist I would encourage you to visit someone who can assess his upper back, neck and jaw. The next avenue is a dentist. Do you think he has sleep apnoea is that why you’re worried he might stop breathing? Dentists have appliances that can help with tooth grinding and jaw issues and sleep apnoea. Muscle wastage - now that’s a lot of weight and 32kg for a 27 male is very significant - can he walk? Does he have a gut or food intolerance issue. Another thing for headaches is I would see an optometrist and see if there’s any issues contributing to headache. Other thing for headaches is dehydration. Could he have a food intolerance test - I ‘ve had one done and it was so helpful. I was eating dairy and eggs and both very significantly reacted.

Neck pain also have you tried a hot wheat bag (at the recommended temperature)? Massage? There are stretches for the muscles of the jaw. There’s just so many options. From personal experience it’s important to have some time asleep in your own rhythm if you possibly can but see if one of the health professionals suggested can assist. Sending good luck and compassion as I have had interrupted sleep like that and it really is traumatic

Hi,
Im very sorry to hear about your son.

I understand he’s your priority, I hear your concerns about lack of care.

Have you considered seeing a different GP, talking to the manager of your health care practice or even changing GP practices.

Have you looked up on line types of approved diets for people who have gastric conditions. Idealy it would be best to get a diagnosis of the type of gastric condition or food allergy he may have? What you can do is illuminate a particular type of food for a couple of weeks, like diary, wheat, sunflower, etc. Just illuminate one type at a time and document any changes in his gastric condition.

Is he drinking soda/fizzy drinks because they are really bad health wise. As he is 27, is he smoking or drinking alcohol because that too could cause major problems.with his gut issues and his headaches.

I use to be a nurse and an OT, I have worked extensively with people who have disabilities.

Regarding his body jerks, have you discussed with your drs micronic jerk syndrome? It can occur particularly badly at night.

One of the biggest thing that is important is to address ‘the elephant in the room’, sleep.
Sorting out sleep issues is majorly important, because your circadian rhythm’s play a massive roll throughout your whole body functioning properly including pain and digestion.
You both should be sleeping in separate bed, that way you don’t disturb each other in the night. There are portable plug in door bells, you could have a bell in his bedroom which he could ring if he needed you. By sleeping apart, you will both get a better chance of sleeping better. If you have concerns about sleep apnea talk to a GP.

It’s INCREDIBLY important and I cannot say this strongly enough, to get your sleep patterns sorted out. By this I mean getting up by 9am and going to bed at a set time every night, getting outside into natural daylight for a minimum of 20 mins in the morning to set your sleep clock EVERY DAY. The other important thing is NO NAPS DURING THE DAY! If you sleep during the day, you confuse your body clock, and what ends up happening, is you may find it difficult getting to sleep, staying asleep, or waking up too early. By forcing yourself and your son to stay awake, you are creating 'sleep debit" which is what drives your sleep. As soon as you have a sleep during the day, you eat into that sleep debit, making it more difficult to sleep and staying asleep. Having a steady sleep routine is the key factor!!!

Ditch the caffeine, the cannabis oil and the supplement. Caffeine and cannabis oil will light up his brain in the middle of the night like a Christmas Tree, wake him up and keep him awake. You don’t need melatonin because the body produces it naturally IF YOU HAVE A REGUAL SLEEP AND WAKING ROUTINE!! Some people find taking melatonin causes and increases headaches. It can also it can cause mental health issues.

What is his diet like, is he eating take outs, ready meals, highly processed foods and drinks? All of this can increase pain, affect headaches, and affect sleep.

What is his activity levels like? He sounds like he needs to be getting outside, with you and just taking gently walks, you can start off for 5 mins and week by week build up an extra minute per week. This will get light into his eyes to set his body clock, it will help with his muscles and muscles strength, it will help his headaches, it will help his digestion, and it will increase his sleep debit which will make his quality and quality of sleep so much better!!!

I am disabled, I suffer chronic pain, insomnia and gastric issues, plus depression.
I am on a clinical sleep study trial with Oxford University (which is the top University in the UK). I am a volunteer because I fitted their criteria of insomnia with depression. I have been with then since November and I have learned SO MUCH about sleep. I have managed to turn my sleep around from waking up 12 times a night, with a sleep efficiency of 30%, and only sleeping 4-5 hours to sleeping 8-9 hours with a sleep efficiency of 97-100% sleep efficiency within 40 days of being on the trial, and only waking up 1-2 times to use the bathroom, and not being disturbed with my chronic pain or headaches. I no longer nap during the days which is really hard, but I know if I do it will screw up my sleep so I make myself stay awake no matter HOW EXHAUSTED I am!!! It’s tough love to begin with, but it gradually gets easier. Im now on day 47 of changing my sleeping routine that I go to bed at 11.30pm and I get up at 9am. If I sleep consistently through the week, the sleep study allows me to go to sleep 15 mins earlier each week. If my sleep is bad consistently I have to go to sleep 15 mins later to increase my sleep debit. When I first started I was going to sleep at 2.30am and getting up at 9am. That was tough. The crucial thing was GETTING UP AT 9am no matter how much or little sleep I got. I reached the point I was so tired, when my head hit the pillow, I slept!! I felt like shit for days as my body was screaming at me for sleep, because my circadian rhythm’s were so out of sink! Gradually gradually, I was able to adjust my body clock. I was allowed to go to sleep 15 mins earlier. It has literally been baby steps each week! Now Im able to go to sleep at 11.30pm, and on Monday night, I am allowed to go to sleep at 11.15pm and get up at 9AM!!!

Your body and your son’s body will not be able to function properly if your circadian rhythms are in ‘free flow’, (sleeping any time of the day and night!)

Detoxing your body, will be the biggest gift you can give it specially from caffeine and cannabis oil!

If you are seriously needing assistance, and you are willing to put in the hard work, read the book “Life time” The new science of the body clock, and how it can revolutionise your sleep and health by Professor Russell Foster. Professor Foster is the head scientist in sleep for Oxford University and he has taught throughout the USA too!

I am under Professor Foster’s sleep team at the moment, and they are simply the best!

In his book, you can read about how caffeine, cannabis, and other substances totally screw up the body and the brain, and increase pain too. He goes into depth about melatonin, where it’s a myth that it’s the sleep hormone. Basically melatonin notifies the brain when to start to produce the chemical to start sleep, by taking it artificially can cause a whole load of additional health complications. One of the biggest things I have learned is how antihistamines can affect sleep badly by preventing suppressing melatonin and other sleep hormones being produced. Medication like Nytol, Benadryl, Sleepeaze which contains Diphenhydramine which is a first generation antihistamine. If taken over a long period can have massive degenerative issues with the brain and its been linked to muscular problems and high risk of dementia with extended use.

At the moment I am trialing out the Luminette light glasses. I put them on as soon as I wake up, and they shine 10,000 lums of light into my eyes at the right angle to simulate early sun so it goes to the right part of the retina and sends signal down the optic nerve to the brain. It’s a drug free way of helping the body clock set. My sleep team will be doing their clinical trials on these glasses on NHS medical shift workers who work extended night shifts to see if these glasses can help reset their body clocks better?

There was a very famous US sleep study done, not too long ago, where 2 sets of students were used. 1 set went about their day normally under artificial light, used tech etc. The other group went to the Rocky Mountains and slept in tents for a week. They had no artificial lights, no tech, and their sleep saw such an incredible improvement. They by the end of the week, their body clock had shifted by 2 hours which was remarkable. They were going to sleep 2 hours earlier, not waking up and waking up 2 hours earlier!

There are 4 massive take aways from this study:

  1. No caffeine, soda, hot chocolate as that contains caffeine, green tea.
  2. No tech after 7pm because of blue lights
  3. Reduce all the lights in the house right down low from 7pm as it simulate sun down to the brain, so it knows it needs to start producing melatonin on its own!
  4. Have an evening wind down routine. Mine is a 2 hour set time. No TV, I can have a bath, give myself a mini facial, read a physical book (e-books emit light into the back of the eyes), write my journal, do breathing, mediation and relaxation exercises.
  5. Keep to the same bedtime and wake times 7 DAYS A WEEK, and no SLEEP during the day!!!
  6. Sleep hygiene is important. I no longer sleep with my partner or my cats, because they affect my ability to sleep and stay asleep, so I sleep on my own.
  7. Active stress reduction, no watching the news on TV, reading social media which may be upsetting, keeping healthy boundaries with family and friends is critical!!! If you go to bed stressed or with anxiety about going to sleep or worrying about your son, then you push up yours and your son’s adrenaline and cortisol levels. That will stop the production of melatonin and the sleep hormones being produced because you are preparing your body for fight or flight mode. Also these two hormones shuts off the activity of the stomach so the stomach cannot function properly. So if your son is suffering stress and anxiety during the day, his stomach will physically stop functioning for the same reason. So it’s critically important to reduce ALL STRESS from both of your lives!!!

I expect there is a lot of information in here you will really hate the thought of. In my early days of difficulties I would have pushed away from the information I have given you. After 25 years of chronic pain, stomach issues and insomnia and a GP who wasn’t very helpful, when I was offered a place on this clinical sleep study, I was SO DESPERATE to get my life back on track, I took it knowing it would be tough, but I knew this was my one chance to get my life back!! Please don’t make the same mistakes I did and let chronic insomnia and chronic pain destroy your life for as long as I have left it for! Please read Professor Foster"s book called Life time, I got a second hand copy online for £3 with free postage, and it’s been life changing, so has his incredible team working with me from Oxford University.

I really wish someone had sat me down 25 years ago, held my hand and given me this advice I have mentioned, because its clinically proven and it really works in improving sleep, digestion, brain function, cognition, mental health, learning etc. You have the chance of improving both of your lives with improved sleep, improved stress reduction, throwing out those supplements and caffeine, and having a clean diet away from processed food, and no fizzy drinks or alcohol!!!

I have also done a lot of CBT, and mindfulness work to help my mental health. I deliberately stay away from the new channels on TV and social media because reducing stress is a key element in improving sleep and overall health!

Best of luck

Nicky

Thanks Nicky. The cannabis has given him a lot of relief since we coupled it with magnesium and passionflower. We have slept 8 hours 3 times in a row the last 3 nights since being on this new routine. Started by going on a GERD diet. Thanks for all the helpful info. I’ll def do a few of the things. Can’t sleep seperate though. He’s too disabled. I really hope you get some improvement for yourself too. Please stay in touch and let me know how you’re doing. I’d be interested to know how it all pans out! God bless and keep up the good work. We appreciate it.
Love, Sue and Jacob. xxx