Sinus headaches

[pigeon12]

I was diagnosed with GPA in 2016 and have been off meds for 18 months. I have regular check ups with a rheumatology specialist and a renal consultant and they tell me I am ANCA negative and my blood tests are fine. However I have on and off sinus headaches and post nasal drip. The symptoms are worse at night and relieved a little by sleeping with my head propped up with lots of pillows. I find exposure to dust, heavy scent and pollen etc also make the problem worse. Has anyone else been left with this problem?

[Beaver]

Hi, like you I had been off medication for 18 months after being diagnosed with GPA in 2008, until June of this year when I started feeling slightly unwell again, unfortunately the illness came back, and now I am back on a low dose of medication. I agree with you that dust etc, can trigger things off. I had been working in my attic, so maybe there is connection. I always wear a face mask even before Covid .Just be aware that the illness could come back, and if you have any further symptoms get yourself tested quickly.

[pigeon12 in reply to Beaver]

Hi. I'm pretty sure my vasculitis was triggered by brick dust during a house renovation but doctors are unwilling to agree.

[Mooka]

I have MPA and am told by my ENT doctor that my sinus problems are not related to vasculitis. I have always been told to use neilmed sinus rinse daily to help clear out my sinuses. In my case the post nasal drip caused upper and lower respiratory infections and I ended up with Bronchiectasis. I would mention your sinus problems to your consultant. A CT scan will show the extent of your problems and whether you need a procedure to clear out your sinuses and widen them to aid drainage.

[pigeon12 in reply to Mooka]

Thanks for your comments.

[Will-ow]

Hello, I was diagnosed with EGPA two years ago. My consultant believes that the original infection triggering the Vasculitis was chronic sinusitis (off and on infections since I was 12yrs and non-stop for 2 yrs prior to Vasculitis). During a recent Vasculitis flare up my consultant sent me for a CT sinus scan which confirmed inflammation and liquid in the sinuses. I have daily steroid drops (as well as rinses) to treat the sinusitis and regular check ups with ENT. My advise is to raise any sinus problems with your consultant.

[pigeon12 in reply to Will-ow]

Thank you for your reply. My ENT appt was cancelled because of covid and I'm not expecting to get one anytime soon.

[Red-head44 in reply to Will-ow]

Hi Will-owI'm not sure it was sinusitis that you had for 12 yrs prior to the Vasculitis - I had sever nose and sinus pain for 7 years building up gradually to an operation for a deviated septum which of course did no good a all. After I came out of the hospital and been diagnosed my GP said that they had wrongly diagnosed sinusitis and it had been the Vasculitis all along. I don't know if I have a 'nasal drip' but I do need to have a hanky on me at ALL times but don't use it every 5 mins unless I am doing something manual or am very hot. Good luck

[Dancerina]

My son has vasculitis and we both have Common Variable Immunodeficiency. His CVID triggered his other immune disorders. We both do monthly subcutaneous immunoglobulin infusions at home, which helps A LOT to lessen post nasal drip and that nagging cough. We both had lingering coughs but no fever, so doctors did not know what to do. Because of the immune deficiency, allergy testing came up negative. (In fact, that is how my allergist suspected CVID - it was pretty obvious I was allergic to dust, but testing kept coming up negative.)

BEFORE I started with the IgG infusions, I had sinus surgery after a CT scan showed blockages in my sinuses. It is one of the best things I ever did for myself. Before that, every time I did a neti pot, gunk would come out of my nose. I did not realize how poorly I was breathing until after the surgery. After the surgery, I decided to start having the infusions. Before then, I just did not think I was sick enough to need to do the infusions. After I felt the difference of being able to breathe, not cough, actually sleep on my back some of the time, not carry around kleenex all the time, I decided I needed the infusions to keep the sinus infections away.

I use the Neil Med saline nasal spray daily. Occasionally I still use another prescription nasal spray, but it is 95% better than before.

[pigeon12 in reply to Dancerina]

Thank you. I found your comments about the dust allergy interesting.