Temporal Arteritis Or Sinusitis? CT scan and response to Pred.

[SNF10]

Hi all, I’m new here. I am a 35 year old female and I’m struggling with something - not sure what move to make next and hoping someone can have some insight for me. On April 22, I got a headache. I have suffered random headaches since childhood, which evened out to monthly headaches around my cycle- easily treated with 2 Advil and do not come back. On this particular day, I took 2 Advil and it reduced the pain but it never fully went away. The next day, I took it again and noticed the same. Fast forward to about 10 days later I saw my ophthalmologist who checked my eyes thoroughly and said she suspects a migraine with aura. I saw my GP, she sent me for a CT of the head. That showed maxillary sinusitis so we did augmentin and prednisone pack. The headache responded to the prednisone but was back the day of the last pill. I went to an ENT who ordered a sinus CT. This showed ethmoid sinusitis and maxillary which covered the entire left side. He put me on 100 mg doxycycline and a nasal steroid spray for 2 weeks. I’m in the middle of this treatment but the headache is still present - it is in my left temple, above and behind my left eye, the area between the nose and eye, down my neck and sometimes the back of my head. It fluctuates daily from being almost non existent to pretty bad where I feel super lousy and it’s painful. Advil does not help.

So my question is- could this be GCA / temporal arteritis? I am young, I realize this, but the location of the pain seems weird for sinusitis. Or am I wrong? Does this sound typical of ethmoid/maxillary sinusitis? I’m struggling on where to go next or who to talk to. It’s affecting my daily life - I have a 5 year old. It’s been draining and scary thinking we are missing something more serious. I am afraid to lose my sight?? What type of dr should I contact? Rheumatologist, neuro or other? Any advice would be greatly appreciated. Thank you.

[PMRpro Ambassador]

I think it is very unlikely that it is GCA - not only are you young and while that doesn't rule it out it makes it much less likely, bit you also say the pain improved originally with an ordinary painkiller which is very unlikely with GCA. Though - I appreciate that has changed.

However, there are other forms of vasculitis, one very similar to GCA is found mainly in young women and another involves the sinuses. However, if it were to be a vasculitis, the right specialist would be a rheumatologist and there are a lot of tests to do first.

[SNF10 in reply to PMRpro]

Thank you for your reply! I appreciate it very much as I feel like no one in my circle has any idea what I am going through.

Yes. The initial headache started and it was reduced by the Advil but did not take it away completely. It has not worked on any occasion since (even slight improvement!) which was what worried me initially. It has carried on since April and I’m going on 3 months of this headache. I definitely didn’t consider Temporal Arteritis until recently being that no medicine has helped except the short course of prednisone. But given my age and also the fact that my cat scans DO show major sinusitis, I really just kept thinking it was that. I am slightly relieved that it’s probably NOT GCA, but I still have a nagging fear- I guess anxiety at this point - since nothing is relieving it! I don’t have scalp tenderness or anything but I did have pain behind my ear when pressing it at first when the initial symptoms showed up. That seems to be gone.

Now my worst symptoms are pain and pressure at the Left temple, behind left eye, and down left side of neck.

Soooo weird. I will look into the other forms of Vasculitis and mention it at my ENT appointment on Monday.

[Hidden in reply to SNF10]

Hi, certainly sinusitis can cause many of the symptoms you describe. It is disturbing having symptoms that havent been fully explained or treated yet. I will cross my fingers that. Your appointment on Monday is more fruitful.🌻

[SNF10 in reply to Hidden]

Thank you so much for your reply as well! It’s so frustrating and scary not being 100% sure of the diagnosis. At first I really believed it was just sinusitis but lately, with 2 failed treatment courses for it, i am at a place where I’m questioning it. I wish the pain was in a different area because the placement (temple, behind eye and above ear) is making me paranoid of TA/GCA!

I also have a history of inflammatory eye problems (I’m 35 now but had bilateral cataract surgery at the age of 30 because of steroid eye drop usage!) I got bouts of unexplained episcleritis (a red, inflammation of the eye) so once I started digging deeper into “temple pain” and saw that GCA is inflammatory, etc it got me shaken up! Hoping the dr has more information soon. Thanks again!

[Ciar]

Your story sounds very similar to what happened to me when I was 35 after my pregnancy with my daughter. I had very frequent headaches that became worse over a couple years time. At the same time I had several bouts of sinusitis. I wound up having sinus surgery that I should not have had, as it made both the headaches and sinusitis worse. The headaches turned out to be migraines. The sinusitis did aggravate them, and so did hormone swings. Prednisone can help migraine in some people. My neurologist has used a quick burst of it to get me out of a long migraine lasting many days, and it has helped me. 29 years later I’ve got PMR but not GCA (and I still get migraines though they’re less frequent). Migraines can be complex and vary a lot between different people. They are very common, especially in women. It’s extremely unlikely that you have GCA, but frequent migraine can definitely make you desperate for help! I got the migraine diagnosis from a neurologist and I was amazed at how little the ENT doctors I saw knew about headache. I think you should see a neurologist or a headache specialist.

[SNF10 in reply to Ciar]

Thank you for your reply! I hope it’s ok I ask you a few things to clarify?

When you had sinusitis, did it show on CT scans? I have had migraines in my past which I could treat with Advil and it would stop it. The reason I didn’t think migraine was because it pretty much is a constant dull, deep boring pain versus the throbbing awful headaches I’ve had in the past. Then it will go away and only be a mild pain that I know is there but it doesn’t “hurt” it’s just there and I can tell it’s not 100% resolved. Can this type of pain be frequent migraine? It does make sense as this is after my pregnancy as well (although 5 years later but the headaches came and went through the past 5 years) and I’m positive I have hormonal changes going on! What did your doctor do to treat your headaches/migraines? This has lasted 3 months and is still not gone. It’s absolutely awful and I’m getting desperate for sure. Sometimes I think it could be a cervical headache as there’s also pain on the side of my neck too- not the back/spine area but off to the side. It is just the weirdest thing and I’m so frustrated not knowing what it is. I will definitely contact a neuro or headache specialist before I do any kind of sinus surgery. I am afraid of that scenario - going under and the problem increases versus decreases. Ugh. I’m sorry that happened to you!

[Ciar in reply to SNF10]

My migraines morphed after I had my daughter. They went from what I used to think of as “normal” headache to monsters that flattened me out. They became frequent, then daily. I could still take excedrin (aspirin/paracetamol or acetaminophen/caffeine combo), but that morphed them again into “chronic daily headache”. My doctor was clueless about that rather common problem and sent me to the ENT. That guy was a bad doctor who wanted to do a lot of surgery and was bad at doing it. I had a baby at home and needed to finish my masters degree, so I was impatient to get on with things, and very naive about doctors. There was some evidence of sinusitis on CT according to the ENT, though I now know a more scrupulous, better ENT would not have advised surgery at that point. I woke up from surgery with a constant “transformed” migraine that never ended, and moved around my head with different sensations (though at that time not quite as much as yours...years later, yes, my migraine can be about anywhere). In desperation I finally went to a top headache neurologist who asked me like one or two questions and said “you have migraine”. Duh. Meanwhile my sinusitis went constant due to the bad surgery, which aggravated the migraine even more.

Migraine can be a multi headed monster. It can be super easy to treat or frustratingly difficult. Before that surgery, I tried a number of drugs that worked on the headache, but they gave me side effects. After the surgery, nothing worked even in combinations. That surgery ruined my health and I never worked full time again. I had to have more surgery within months which made the headache worse...chronic migraine. Be very careful about your doctors and your choices. Take your time to make decisions about surgery (but they are much better at sinus surgery these days). I think you need a very good headache specialist. I’m pretty sure GCA will not be words they will say to you.

[SNF10 in reply to Ciar]

My goodness you poor thing!! That sounds so awful. Bad doctors are scary - I had early cataract surgery (at 30!!) because of a bad ophthalmologist who kept giving me the strongest steroid (durezol) over and over for eye inflammation. Any other eye physician I see since has said that was medical malpractice but because cataracts can be corrected, it’s not considered “permanent injury“ which is just wrong because it does change your eyes permanently and also sets you up for complications much younger. Anyhow - I just had to commiserate about bad doctors!

As far as this headache, on my CT scan it showed moderate ethmoid sinusitis and a fully opacified maxillary Sinus- it was almost 100% white when it’s supposed to be black (hollow/air filled). So I do know that there IS a major sinus inflammation on the left. Does it require surgery? Is it the cause of the headache? I’m not so sure. I saw 2 ent’s- the first one immediately went to sinus surgery. I sought the advice of a second ent that my grandfather has seen for 10 years and he has me on a different treatment course, but said sinus surgery may be in my future.

I am going to seek out a headache specialist and discuss all of this with them- I do think that’s a good idea. And I won’t have any sinus surgery until I speak with a neuro and try other things. The headache is one sided (left) and definitely isn’t my normal so it could be a transformed migraine or some other type of headache and not necessarily Temporal Arteritis.

[Ciar in reply to SNF10]

My neurologist used to tell me to keep the sinuses healthy. For me they aggravated my headache but I still have migraine even when they’re clear.

[Happyfearty]

Dear SNF10, did you find any relief or answers yet? I read your post and it is very similar to something I'm going through. I am also 35 year old female. Following a bad chest/sinus infection in summer I've had continuous pain. Initially it presented as tooth ache and I had 2 root canal procedures. After this the pain moved and got progressively worse. It's on the left side in cheek, behind eye, jaw, ear, and weirdly, like you behind the temple on side of the head and down the back of my head. I have scalp tenderness. It is being treated same as you with 2 week course of antibiotics and nasal spray as potential severe sinisitus. At first I've had pain relief from naproxen (anti-inflamatory) but that has started to have lesser effect and the pain is coming back. It's like a dull throb as if there is something putting pressure on my sinus/head from inside. I haven't been for scan. The gp suggests referral to ENT if it doesn't clear up within 2 weeks. Before seeing gp I was admitted to hospital with pain over weekend and the doc there suspected trigeminal neuralgia (I don't think it's this). I've had both migraines and sinusitus in past and this feels different - quite scary as it is in and around the head and feels like pressure cooker and something really wrong. Wondered if you had any answers or found any further useful support? Thank you - any further advice would be so gratefully received from anyone here. I've found this post incredibly helpful.

Ps - I am extremely exhausted/fatigued - I'm not sure if this is from pain/meds/post viral fatigue but I am finding daily tasks exhausting.