Sorry to sound like cracked record but as the “ waking” headache enters its 6th year I’ve noticed a change .
The headache is still very intense around temples every morning when I wake but also strong pain behind bridge of nose like someone screwing from one side to the other .
No other sinus symptoms , no running nose, no mucus . Mouth is incredibly dry and use 2 zylimelts every night . Pretty sure I’m mouth breathing despite best intentions not to. Had a steroid nasal spray last year but made pain worse . Also used sterimar . tried many medications . Only thing that helped was 10mg of pred but that was for something else not head. Currently take hydroxy and 2.5mg pred .
Has anyone had any success with nasal strips or nose ring ?
I’ve been waiting 2 months for results of sleep apnea tests but I’m guessing they were ok . Due to have tele call with headache nurse maybe end of year .
Open to ANY suggestions of what I could try ?
Also forgot to say if I get up say at 3am and walk around the pain goes . If I then go back to bed the pain returns when I wake again so it’s like round 2 🤦♀️.
Thank you so much for reading appreciate this forum and all of you so much 🙏 xxx
ps. Checked humidity in room was normal
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Tiggywoos
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This is a longshot but I have had similar issues and it seems to happen this time of year for some reason
I am not sure how common giant cell ateritis is in lupus, but have read recently that other sorts of vasculitis can be more common. I think what happens is immune complex can be deposited in blood vessel walls.
I get tender scalp headaches that can affect half my scalp (so bad I can't lie of one side of my head). At the same time in parallel, I can also get pain behind my nose and even loin pain that go when I'm on short course steroid for something else.
I don't know much about the subject but believe vasculitis can affect behind the nose, and even cause big nose bleeds.
I have not had the ANCA test but want to. I have been to GP numerous times, mentioned to eye hospital, nearly had an ENT referral - and have had two trips to Vasculitis but only to look at the temporal artery. It is still a mystery.
The video I posted a link to last week on 'Environmental triggers' said that because infections can cause flares, that lupus sufferers should be careful in 'peri-infection situations' eg where there are bacteria colonising. So been thinking about this a lot.
From experience know it is a bit of fine line with steroid nasal spray, I use the spray when nose is dry or sore, but sometimes end up on antibiotics for sinusitis. I guess the steroid reduced my immunity and increased bacterial growth .
So I'm thinking if I can ensure healthy mouth, nose and sinuses, and avoid polluted air, traffic fumes etc that I may be less likely to get some head symptoms.
The Environmental triggers video is worth watching. I am being careful about all manner of things affecting my nose and sinuses since watching it. It altered my mindset.
I have found a paper of lupus and vasculitis. This includes a section of vasculitis affecting the head (central nervous system headaches etc) it also mentions a type of vasculitis that is linked to infection:
Fantastic article .. I didn’t even know there was a lupus vasculitis .. surprise surprise they say early accurate disgnosis is key and hardly any of us get that do we …
(Once I defrosted fridge 3am and had an ice lolly. Symptoms had been so bad, dryness right down throat into chest, feverish etc that I was too scared to go back to bed, and ended up at Tesco - doing during night shop. Then had to leave quickly as fever and weakness returned)
I think there is some sort of 'inflamation equilibrium'. This edges back and forth based on what is happening to us.
Getting up activities helping : maybe circulation improved, better breathing, getting drink of water, natural steroid kicking in etc
Sleeping activities not helping: Lying still, breathing less well, circulation to head cramped up by carotids being squashed on pillow, less natural steroid and less adrenaline.
Thank you so much for reply and so interesting .. husband reminded me this morning that when I had undiagnosed gall stones I only ever got the pain in middle of night . Totally agree , moving around means better circulation blood supply etc . It did make me laugh you defrosting fridge as I’ve cleaned mine before and also made soup at 3.30am . Simple activities that don’t involve any concentration or eye energy
Hi T and SC, I'm very interested to read your conversation. I have minor versions of the symptoms you've both described and just dismissed them as dodgy sinuses, as that's a long term symptom from when I was first diagnosed. I get a cold, icy feeling around bridge of nose as well which is weird!
But when Vasculitis was mentioned my ears pricked up! I have low level rash symptoms constantly and had biopsies done on my face recently. These were done to check whether it was truly a lupus rash as I take 15mg Prednisolone daily and rash did not appear to be responsive. At the time my dermatologist wondered if the problem was 'vascular'!
One part of the rash is on right top hairline and I regularly feel that wider area as hurting, tender to touch, aches like headache sometimes and it's above my right eye which has started to have Central Retinal Vein Occlusion (blocked vein in eye).
After examination the biopsies were confirmed as a lupus rash. However, I'm now linking this even more to a possible vascular problem as well and will bring this up with dermatologist at my next appointment as well as in eye clinic.
Thank you Tiggywoos for raising the issue in the first place and Striated Caracara for your information. 😊
ah I’m just so glad it’s helped someone . Do you mind me asking were your biopsies done in nhs hospital ? I’ve got an open dermatology appointment and they said they will biopsy rash if I get a big enough patch ! X
Ps my original diagnos was urticaria vasculitis but changed to UCTD x
I also suffered for many years with migraines and headaches upon waking.
I was on a few different medications, one for migraine prevention and the other for anxiety and also HRT!
When I got my lupus diagnosis I stopped taking the migraine meds and weened off the anxiety meds and off HRT for a natural supplement and the headaches stopped almost immediately! I’m now migraine free for nearly 8 months.
I think some of my meds were interacting. Maybe review everything you take. I only take hydroxychloroquine now and natural supplements and have managed to get rid of the headaches.
I use xylimelts, a room humidifier, saline nasal gel, saline spray, mouth moisturizer gel and still wake with a headache but it is better if I do those things. I have Lupus/Sjogrens. I think but of course cannot be sure that hydroxychloroquine does help somewhat for these symptoms. I have had sinus surgery in past for repeat sinus infections which helped for the sinus congestion/pain I had in past.You might look up sinus irrigation which I have also used in past. I recently have looked into taping mouth shut but have not tried it. Yes apparently that is a thing and they sell products on Amazon for it.
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Sores back of throat 
Gutted 😞
blisters in my nose, mouth and tounge any advise???
Frequent UTIs 
Reducing prednisolone
