apologies as I have posted this before but I thought there might be some new forum members .
I’ve woken daily for last 4 years with vice like hangover headache . It does shift if I get up , move around and have a drink . I’ve tried amitriplin, pregab etc but they just make me constipated . Asprin and nurofen do nothing either . I did wonder about sleep apnea but I don’t snore and I’m small so it’s always dismissed . MRI 2 years ago was clear .
I would love to know if anyone has the same headache 🤕 and if they have found anything that helps . I find it so overwhelming to think I’ll wake up with this for rest of life .Sorry to sound so negative .
Big hugs to all and thanks for all your brilliant posts 😘 🐈 xxx
Ps also tried acupuncture and reflexology .
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Tiggywoos
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Have you spoken to your Rheumatologist about the headaches? What have they suggested? If you haven't done so already, I would suggest doing a migraine diary, getting your eyes tested, and tracking your cycle (if you are still having them). The reason is, they will ask you about these and it would be useful to demonstrate that you have exhausted every single avenue known to man. If you have done all of these things, maybe it's worth being referred to a Neurologist. Bring your migraine diary with you to the appt.
I get excruciating migraines and have done - albeit on and off - since my teens but during those years, I thought it was dirty oil (buying fish and chips fried in dirty oil) was the culprit. However, later on in life, I discovered the migraines were a precursor to a flare including a lupus-related condition plus sadly a rare condition, which thankfully is stable now. However, I did find, during my high-dose steroid stages, the migraine did not raise its ugly head.
I use co-codamol [varying strengths]. Have you tried this? I only use this if all else fails and if the pain, photosensitivity, and eye swelling are not abating because it causes constipation and it can lead to codeine addiction. It nips it in the bud and all that is left is the other symptoms. I also only eat bland food and any pungent smells make it even worse.
On a side note, and I don't know if you've experienced this but because it has been happening for so many years, my pain threshold has increased. To the point that I underestimate, in general, the level of my pain, and as a consequence, I have not sought medical assistance at a time when I should have. - so I have been told.
thank you so much Amukara and you’ve struck a cord on many levels . I think my pain threshold has increased especially now I wake up in early hours with burning feet alongside headache .I had ketamine infusions for my feet (also hoped would work on headaches but didn’t touch it) . When I spoke to rheumatologist he was only interested in whether or not MRI had been done .
I’ve never thought of them as migraines as I only get them early hours of morning then they go but maybe they are ?
You’ve also reminded me that when I’ve taken steroids in the past the headaches did go .
Thank you for giving me the nudge I need as I do think I underestimate how they impact my life . I should talk to GP .
have you had the inside of your nose looked at as I had the same 20years ago..my doctor sent me to hospital and they drilled the inside of my nose down to narrow the bone tissue.this certainly worked for me.wishing you well
thank you Lemrac for your reply . Nasal passages fine other than dry which I use a spray for . My husband has a problem with his nasal passage so thank you for information !
Have you looked at a B12 issue and there is something called Giant Cell Arteritis - this can cause pains in the head - you should suggest this to medical team.
my dad has GCA so thank you for pointing that out I will definitely mention in next appointment .
vitamin B12 is most annoying as I always test high despite not supplementing . Even haematologist didn’t know why it’s high as instrinsic factor and mma ok so no absorption issues
Your haematologist should know about this - or do you mean someone who just takes blood a phlebotomist as they wouldn't be expected to know. Sometimes - and it is not the only reason B12 can show high in the blood - is that as it is stored in the liver - if the liver is being cluttered shall we say - it will throw out what it can to take pressure off the liver storage facility. You should get the two issues looked into and make these suggestions. Not sure what drugs you are on - but have you tried magnesium oil which is a relaxant and could help - but do not use too much - it is a spray by Better You. A couple of sprays should be enough. Hope this helps.
yes it was a haematologist and I’d been referred to him to see if any blood disorders were causing Erythromelalgia but they weren’t .maybe I need a haematologist with interest in B12 and associated issues …
Yes I love magnesium really helps with constipation and relaxation at night . Thank you for taking time to reply 😊
Please follow this through - I get so cross when 'experts' in their own field don't seem to think of something like this or even know about why your B12 is high. Good luck.
yes. It is called silent reflux. I have it. Though it does not cause a terrible headache. I have more than likely though tried 10-12 pillows for my neck and back alignment. Depending on how my spine feels, I have a pillow solution. The pain you are describing can also be attributed to a cervical spine issue. Bulging disc, pinched nerves. Last, allergies. Pets, where you live ie molds, pollen.
thanks for making me smile 😃 as I was thinking how on earth does she sleep on 12 pillows 😉. Know exactly what you me an … me and friend say we should open pillow shop .. I will google silent reflux ..
Yes you can - it’s called silent reflux LPR and is quite common with Sjogrens I was told - as are severe headaches in the mornings.
Some other thoughts:
Neck headaches are common to wake up to in mornings and not necessarily with neck pain. I’m prescribed 5mg Valium to take occasionally for these as it’s the muscle spasms I get during night that cause the awful wake up headaches. Mine is caused by severe cervical disc disease but I’d never have known about until my rheumatologist explained. I now sleep with my neck very well supported with a tempura pillow which I mould to fit my neck when I go to bed. Sometimes though the reflux slope of my bed makes me slip off it and that’s when headaches occur. Also after long car journeys the previous day but not doing them much anymore for other scleroderma gut related reasons - and sciatica.
So worth thinking about wear and tear of spine if you haven’t already had MRI?
Other possibility if you have sjogrens with your Lupus is dryness you mention I’m your nostrils. I find the dryness in my mouth and throat makes me squeeze my cheeks and strain my jaw. I don’t think I clench as no scalloped tongue now but I’m guessing it’s a factor I’m unaware of. I find a humidifier and xylimelts help. Also a spray up nose but you already do this. ENT said all sjogrens and silent reflux and neck causing headaches for me not sinus or apnea.
gosh yes really helpful and I will write them down . Pillow is definitely a good try . My Schirmers test was positive so a humidifier sounds like a good idea 👍. Does it make any noise ? Had MRI 2 years ago and spine was ok but I’ll dig out notes . Many thanks 🙏
glad to be of use. You don’t need to have diseased discs to get these neck headaches - could be soft tissue inflammation causing muscle spasms relating to your sleep position. The pillow and angle of my neck and spine while resting seem to be most important factor for me in avoiding waking with terrible headache .
My humidifier hums. Husband doesn’t like it much but he snores which is much worse! I like the sound as I have tinnitus and it’s white noise and very steady. All I can say is it works for me and for many people with Sjogrens I think.
I’m guessing from what you’re describing that referred neck spasms and Sjogrens overnight oral dryness and clenching could be your problem. If you’re okay with xylitol then xylimelts (bought online) might really help avoid clenching and squeezing checks for moisture.
mine snores so bad he drowns out the air ambulance when it flies over head to rescue people from walking on the hills !!! I get awful shoulder problems (see physio , stretch etc nothing works ) so you could be right about the soft tissue inflammation . Do you mind me asking which pillow you bought ? 😊
Sounds like we have twin husbands! We are lucky to have spare room so can always escape myself or boot him out 😉
Shoulder probs would definitely explain headaches as it comes up from the shoulder and all is positional with this type of pain. I’m afraid my own tempura pillow is ancient - think I invested in it about ten years ago - judging by the old looking lining! If you look online for neck supporting pillows on specialist orthopaedic sites you will find the newer equivalent but I’d recommend you work out first with an ordinary pillow good neck positions while resting as it’s very individual. I’ll see if I can find an illustrated diagram I saw posted online quite recently.
I did say to him after 18 years he’s lucky I’ve not suffocated him 😉. He had pneumonia a couple of months ago and one good thing that came out of it was I nagged consultant about his snoring so they did sleep study . Haven’t had results yet 😳.
Has your OH had sleep studies ? I use a dun elm pillow for side sleepers .. it’s comfy but only £20.00 so loses it’s support very quickly
Oh dear - no husband won’t do sleep studies or accept that he might have sleep apnea. He went to a specialist dentist on referral and got a splint made but it just drove him mad and the dog ate it!🐶😂
It takes me forever to get him to go to GP about anything. He has very pronounced turtle neck like his father - who also snored very loudly. I’m guessing my chap has sinus issues to account for his snoring but he opts for other room now as dog likes to sleep on his head and doesn’t wake him for snoring! He reluctantly goes to GP today about pain and swelling in feet and hands and deformity issues in his neck and spine. Only thing showed on xray of foot was mild osteoarthritis but podiatrist says his feet are hypermobile.
However he doesn’t get headaches ever so he’s lucky in this regard!
I’d work out what you need pillow wise and throw some money at a really good neck support pillow. Also if you are doing long journeys or in hospital recliners getting infusions then I’ve found a good memory foam flight pillow invaluable.
oh you have made me laugh 😂 as I have visions of dog on head sound asleep .. my cat Prince Tiggy comes in and sleeps on my head so I think heat must be pumping out of it 🤦♀️!
Our husbands sound similar in stature . Mine apparently has nostril problems . Got him a ring from snoring foundation worked a treat but cat chewed it !! Also has pronounced neck prob a snoring pre requisite.
I will defo do some pillow research and have look in shops as I’m sure some do some good ones now x
this one looks helpful. But some pillows are more flexible than others. I have loads of different to prop me up and bed bricks for gut and use as knee supports.
yes I get this, not everyday , but often for a few days in a row. Usually goes when i get up, paracetamol not much help. Told nurse when I got my covid jab that I had had it after my flu vax and she said, do you drink enough. I realised I don't drink much before bed as I dont want to get up in the night.
Mine is in my upper neck and up into the back of my skull always on left side.
So long since I've seen my rheumy. On steroid and azathioprine.
Hi, for many months I too was waking up with a headache every morning. I put it down to my ankylosing spondylitis. However, doc did blood pressure and mine was high. I took blood pressure meds and the morning headache has gone! I was surprised by high BP as I am not overweight, don't smoke etc. But the meds have worked.
Wow your blood pressure is very low - are you on steroids - I too have SLE - but don't take medication other than steroids - I have a thyroid problem that causes most of my SLE issues if I don't keep it 'well fed' shall we say - here is something you might find of interest.
Quote " Can Low Blood Pressure Cause Headaches?
Although it’s not a common symptom, low blood pressure can cause headaches. A rare condition known as spontaneous intracranial hypotension (SIH)—a condition in which fluid pressure inside the skull is lower than normal—can be the culprit when it comes to these types of headaches. Unquote "
no not on steriods but when I had a massive flare in face I was and headaches went away !
I love information so thank you for this ! I do wonder about the thyroid as the results are always on the lower numbers but gp always says ok . Why are we so complicated 🤦♀️🤣
Hi I have adrenal insufficiency and have to take steroids - if your thyroid is at the lower range which mine was - I was suffering with everything going muscle problems - digestive you name it - your blood pressure will go low as your adrenal glands desperately try to supply your body with the energy you are not getting from your thyroid gland - you really must insist you get to see an endocrinologist - a Lupus consultant is more a Rheumi and not really the right medical person for this.
A daily headache was my first symptom before developing SLE, which later morphed into mixed connective tissue disease with ME/CFS and fibro.
I tried all the pharma stuff, acupuncture, stretching, massage etc. Some gave me some relief, tramadol worked great for a while, but then the rebound headaches kicked in.
After 10 years of suffering I started 3 monthly Botox injections for migraines, and they've worked fantastically. Most days before I would have a 4-8/10 now I have many days when it's only 1 or 2.
Hope you get some relief soon 🙏
hi Tiggywoos,
I do have this occasionally and I attribute it to RA in my shoulder, elbow and neck. I’ve been down the pillow route and spent a fortune to no effect, I often sleep without one. I also have migraines but they are usually caused by stress or worry. Codeine helps but I prefer not to take it unless I have to due to constipation. I have found the POM volterol works well when applied to my neck and shoulder before bed and often reduces the morning headache making me sure my neck is the cause.
the over the counter version of the gel is weak but the stronger gel is prescription on,y however if the weaker version even helps a little it’s worth it and then you can then try and get GP to add it to your repeat script,
PS: let it soak i to the skin, do not rub in, for best effect.
Sorry you're still suffering. I have a headache all the time but mine started when I had viral meningitis many many years ago. It's worse in the morning It often progresses and I get migraine. Then I have to go to bed as vision goes funny and I'llget dizzy and vomit. I didnt think it could be from lupus.Now have Sumatriptan I can take if if I feel migraine coming but cant always catch it in time and tablets doesn't always stop it.
No its an oil By Better You Holland Barrett - or online rub a couple of squirts on your arms before bed - be careful as bit messy and don't touch eyes as a salt !
Here is an article regarding low magnesium and migraines etc. - personally I would prefer a natural product rather than something that has to go via the kidneys - for anyone with low blood pressure - tablets would not be recommended - but the Better You Magnesium oil has helped me with general pain issues and insomnia too.
I love magnesium it’s a life saver from a constipation point of view and mine is always low when I have a blood test . I find Spray is good for muscles but the capsules for constipation x
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