Sjogrens sinus migraine

[jlo211]

My sjogrens is allegedly mild - based on my bloods- don’t get me started! But I have terrible sinus migraines which I believe is down to dryness in sinuses and nose. I’ve tried everything, Sterimar nasal rinse, Neilmed sinus rinse, Neilmed nasogel, sudafed etc but nothing works. I can literally feel my head pound with every intake of breath. GP and consultant say there’s nothing wrong with my sinuses but why does my face feel heavy and dry then? Can anyone help or suggest something to ease this, I just can’t take it anymore!

[amc282]

I have been the same lately. Dry mouth and nose and throat. I am trying NeilMed nasal gel at the moment with some success. I am also concerned the dry heating of the rads isn’t helping, either. I was going to try do some pots if steaming hot water with a towel over my head (old school) and see if it helps. Was also going to look into using aloe gel. Let me know if you find anything else worth trying. Take care. 🌸

[jlo211 in reply to amc282]

Thank you. Yes I should try the old school method. Do you put anything in the boiling water?

[amc282 in reply to jlo211]

Hmmm good question. I will do a little investigating. My first thought would be nothing. Just plain old water and not too hot, watch your face.

I just found this article and thought it sounded gentle and sensible: stuff.co.nz/life-style/well...

[Insomniacette]

Urgh I'm so sorry @jlo211 by far the worst thing I've suffered with sjogrens was a sinus infection which lasted over 2 months where I tried everything including nasal rinses and nothing seemed to work. In the end what did work for me was a nebulizer with saline solution. I did it in the morning, after lunch and after dinner.

[Simonebirds]

Hello IToo get horrible headache and it’s causing me anxiety . Advil’s do nothing . Does yours pulsate ? Mine does and when I bend head forward it seems to worsen . Also neck issues .

[jlo211 in reply to Simonebirds]

Yep bending = pounding. Sometimes the only thing that works is sleeping. Over Christmas I had several of these headaches which basically turned into migraines resulting in vomiting. I’m soooo over them but no doctors are taking me seriously. They shine a light up your nose and say well I can’t see anything....

[Simonebirds in reply to jlo211]

This is so odd really is . My sjogren is mild too as per the numbers however the headaches are horrible pulsate. Sound sensitivity. Last days.

[Hidden in reply to Simonebirds]

If neck issues then probably cervicogenic headaches/ migraine caused by wear and tear in your neck. I believe occipital nerve blocks can help and I take Diazepam when mine are really bad - which fortunately they usually aren’t. It’s much better now I use a neck rest and keep my head and back well supported.

[Chris21]

it might sound a bit odd but are you using eye drops or gel? I read this a while ago on the BSSA forum. apparently if your eyes get vey dry this can affect your sinus. I use eye drops during the day and viscotears gel before bedtime it seems to help.Doesn't always stop the problem with sinus, one minute they're bunged up and then dry and sore. I use a steroid nose spray in the mornings, occasional nose wash (hate this)and a warm eye mask which also sits on the sinus tubes, which I find helps ease the pain.

unfortunately I think its trial and error to find what works for you, hppe you find some relief soon.

[jlo211 in reply to Chris21]

Thank you! I’m currently using hylo-tear and Rheims said they would write to GP about a gel for night-time. I did wonder if my eyes would affect sinuses. I’ve had a really uncomfortable 48 hours and it’s so frustrating not knowing what to do. Thanks for the tip

[Chris21 in reply to jlo211]

Hope it helps, I know how uncomfortable it can be.

[Jmiller623]

Allegra twice a day, montelukast daily. Both good for allergies/decongestion which became a problem only after I was diagnosed with lupus. I have Sicca but not Sjogrens.

I do a very warm morning saline rinse with neilmed packs. Then use Flonase and Astelin nasal sprays after my saline rinse. Keeps my sinuses clear throughout the day. I also have completely collapsed nasal valves from cartilage loss so I’m perpetually obstructed. I get some flow with the regimen above. Hope you find relief soon! ❤️xx

[Hidden]

I’ve been the same and when I asked optician could this be causing some of the pain in my left eye,it’s really bad she just shrugged her shoulders then said possibly.I took deliver of a humidifier from amazon last night,was under £50 and it gives out a very fine mist into the room and in about an hour I suddenly realised my nose didn’t feel so dry nor was back of throat so I’m actually pleased I got it,it’s early days I know but might be worth trying.?

[jlo211 in reply to Hidden]

Thank you! That’s good to know. I’ve recently been told I have sleep apnoea and I have mentioned to them that I am worried about the CPAP causing further problems but they said they can supply a humidifier too so watch this space!

[Hidden in reply to jlo211]

Hope it helps you I’m pleasantly surprised by it.I had two air purifiers on the go a few days ago it made no difference.we are presently renting a house while our house sale/purchase goes through (which it did last night hurrah) and the carpets are minging I must Hoover a ton of animal hair and muck everyday,I don’t imagine this is helping my eyes and dryness issues everything just feels mucky and dusty.Today I’m going to try combining an antihistamine and steam inhalation’s then stick my drops in and put on my heated eye pad and use the humidifier,it sounds like a military operation doesent it lol ,I’m just so desperate to get some relief from this.

Best of luck with it I hope it helps you,I do like it.

[Hidden]

I don’t know who tells you that your Sjögren’s is mild based on bloods? But seronegative does not equate to mild! I’m told mine is severe now after years of being dismissed due to no anti Ro or La.

My lip biopsy was 100% positive but that didn’t count as severe. Inflammation always high to very high so I then discovered I have high immunoglobulins relating to severe end of Sjögren’s and now a rare antibody for Scleroderma.

The small fibre neuropathy has progressed all over my body to cause complete dysmotility throughout my gut including gerd, gastroparesis and bowel dysmotility.

Yet I don’t have scleroderma outwardly so my doctor says all is severe Sjögren’s causing progressive autonomic neuropathy, having discharged me with “mild” Sjögren’s a few years ago.

Just a thought but your headaches could be caused by referred muscle spasms in your neck - which you may not even be aware of? ENTs have scoped me and dismissed all my issues including headaches and severe nose bleeds as neuropathy and dryness only in the nostril area. I use Xlear which seems to help. Keeping my neck well supported makes a lot of difference now MRI has shown severe cervical disc disease.