Severe head and face pain ongoing

[Lucyfearn]

My husband has recently been diagnosed with gpa vasculitis but has suffered with ongoing extreme head and face pain- he is having to take morphine for the pain! No one seems to be explaining what’s going on but I just wondered if anyone has had similar pain? TIA!

[Budapest]

Hi Lucyfearn. I had severe head pain around my nose area before diagnosis with Wegener's Vasculitis. I believe this was because my nose was being damaged by the untreated Vasculitis. I was left with permanent damage to the area around my right eye which has affected my sight. The dreadful pain stopped when I was given the correct level of steroids by a Vasculitis Centre of Excellence.

[stuc]

Hi LucyfearnWhen my GPA flares I tend to get pain in my ears, across my nose and head, you don’t say what meds your husband is on, when I flare my rheumatologist gives me a course of rituximab which helps.

The disease tends to affect the face/ears/nose area, best to discuss this with specialist

[Lucyfearn in reply to stuc]

Great, thanks he’s on prednisolone 30mg daily and 15mg methotrexate weekly?

[blackgolf]

Hi I also have vasculitis and suffer with trigeminal neuralgia which give excruciating pain in my face usually affecting right side of my head. Pain in head, eye, cheekbone, ear and jawbone. I take gabapentine, coco Damon and use heat pad to relieve the pain. It’s usually worse in the winter months have to wear scarf hat etc to try and keep it at bay. At one stage I was taking carbamazepine which is an epilepsy drug but it did help. Hope he feels better soonDenise

[Red-head44 in reply to blackgolf]

I too was diagnosed with trigeminal neuralgia before my Vasculitis diagnosis and then my GP said it had been a missed diagnosis and it had been the Vasculitis instead.

[blackgolf in reply to Red-head44]

Diagnosis is so bad think improvement needs to happen my diagnosis took years xx

[Main1234]

Hi I’m sure there are more with experience on this site but the drugs he is on are usually maintenance drugs once IV infusions of either RTX or cyclophosphamide have been given . Is he under a consultant with experience of treating GPA vasculitis?

I hope he improves very soon this disease certainly sends curve balls .

[sorefeetsoldier]

Yes I Can remember 2014 when I was diagnosed ....eventually with wegners, I remember face pain around eyes and nose I had 3 teeth removed as I was convinced it was a tooth root into my sinus causing the pain but it wasn't and the teeth were good☹️.

So still in severe pain ..I even told the Doc that even my hair was hurting ..he looked at me as if I was daft ..well I might be daft but I'm not stupid🤔.

But I do know exactly what your hubby is going through.

Is he on steroids yet???

[Lucyfearn in reply to sorefeetsoldier]

Yes had three infusions and on daily steroids, looks like he’s being admitted today though as morphine isn’t helping and they want to do further investigation! It’s turned out world upside down!

[sorefeetsoldier in reply to Lucyfearn]

Hi,

I really do know the hell you both are going through and you are his rock of support when all else is going on I'm sure he can rely on you. I think that is more important to him than any medication .

I used to get severe eye pain with nosebleeds too and the only releave i got was having very hot baths, I remember my wife serving me my dinner in the bath 🤭

But the heat seemed to reduce the pain a bit.

Remember your masks etc at the hospital cov 19 still a major risk factor too.

Hope all will be resolved for you both soon.

Stay safe

Sfs

[Lucyfearn in reply to sorefeetsoldier]

That’s so funny! All my husband does is sit under a scorching shower so it falls on his head and face- I give him food in there too! It’s relief whilst he’s under it but then as soon as he gets out the pain returns! Thank you so much !

[sorefeetsoldier in reply to Lucyfearn]

Yip seems we have the same condition right enough..I used to dunk my head under the hot water in the bath but it reminded me of the last time I was in a church they tried to drown me😳

Remember there is a lot of good advice on this site and you both are not alone in this situation although I know at times you feel isolated.

Keep us up to speed with what's happening.

Sfs

[Lucyfearn in reply to sorefeetsoldier]

Thanks so much it’s so nice to be able to get advice and speak to people in a similar situation!

[jackrussell in reply to Lucyfearn]

Hi Lucyfearn, my Vasculitis always affects my face,nose,ears and head ,and like your husband I find I get some relief from heat, but as you suggest once away from the heat ,the pain returns, so I found a way round that , it may not work for your husband and you do need to take care ,but I thought I would give my hairdryer a try, I can control the heat and I can move it to where I need it I take a break after a few minutes and you can at least sit in a chair and have control of usage, incidentally my little Jack Russell had dreadful arthritis and found relief from heat, and it was difficult to find anything that worked for her, so I tried the hairdryer ,she loved it .I mentioned it to the vet,and he thought it a very good idea ( of course take care with the heat ) so may be worth a try,

[pigeon12]

Hello Lucy. I was diagnosed with GPA vasculitis in 2016 and one of the most unpleasant and persistant symptoms has been pain in the head and sinuses. I also get blocked ears. Six months ago I stopped eating all dairy products and food containing milk, butter and cheese and within a day or two the pain in my sinuses was gone and my ears stopped blocking up. I've felt much better since. For years I've been sleeping with my head elevated on three pillows and this stopped the awful fullness and pain which would wake me up at night. Splashing cold water on my face and neck works for me if I'm not feeling too great. The connection between dairy produce and sinus, catarrh and phlegmy throat is well known by singers who avoid these foods before performing as they believe they cause inflammation and take away the clarity of the voice. It works for me but we are all different. It might be worth a try and oat milk is a good substitute and you can get chocolate without milk in M@S.

[Lucyfearn in reply to pigeon12]

Thank you so much for all this advice, much appreciated!

[Red-head44]

I’ve been on 20mg of Duloxetine for years and have recently gone up to 30 mg. This drug is primarily used for depression but can be used for severe pain. It worked when nothing else did.

[winfong]

Sounds like it's gotta be Wegener's. Giant cell arteritis (AKA temporal arteritis), though, is one more possibility. Lots of cranial issues with that one.