Newbie with possible GCA

[insomniac_]

Hello everyone, this is my first post here. I've read through a lot of your concerns and experiences and I feel kind of guilty in having to ask this here... but here it goes.

I'm a 22 year old italian female and I've been suffering with near-constant headaches since the 10th of June.

They started very aggressive at first, had them only in my right temple and only when I stood up and they were made better by laying down, which at first made me consider a CSF Leak.

But with time they became more generalized, giving me a terrible sore scalp (to the point where brushing my hair is incredibly tedious), head pressure and hitting me mostly in both my temples. My temples are also sore to the touch when I get these headaches - although I can't see bulging or lumps.

These past few days I've also had eye pain which isn't excruciating but very annoying, almost like my eyes are constantly dry and it's difficult to move them. I haven't noticed particular changes in vision, but sometimes I have to strain a lot in order to see from a bit far away from me. I associated this with the fact that I have to work on my computer a lot, but it doesn't feel like simple eye-strain. It feels like I have a very thin black layer on my eyes, if that makes sense. Almost like TV static.

One thing I should mention though, is that the headaches go away with over the counter painkillers. Be it aspirin or ibuprofen, they work and the headache subsides. The problem is that it comes back the day after and I really don't want to spend my life taking NSAIDS, especially given the complications that they bring. I've read somewhere that these painkillers shouldn't work with GCA, but you never know.

I've already been to the ER twice, had a CT Scan and MRI (all clear except for infected sinuses, but I have no other sinusitis symptoms? No fever, no congestion, no ear pain...) and I've talked to my GP multiple times, begging him to at least refer me to a neurologist because these headaches are making me severely depressed and unable to function like a normal human being. He thinks this is only stress, which angers me, because it's clearly not, since I suffer from depression and I know very clearly when my pain is brought by stress, and this is not it.

I'm scared to even bring up the possibility of GCA because I know he probably won't even know what it is, and if he does, he'll say that I'm too young to have it... but all my symptoms point to GCA, the temple pain, the eye pain, the strange blurriness, the pressure. I even completely lost my appetite.

I guess I came here to hear your experiences and see what I could do, because nobody seems to believe me.

Again I apologize if this seems in poor taste, because many of you have suffered through much worse than me...

Thank you for your time and patience in reading this

[PMRpro Ambassador]

It is very unlikely you will find any doctor prepared to consider GCA in someone so young - although it IS possible. Everything is possible. However, there are other causes of the symptoms you describe and the skill is ruling them out.

Are you in Italy?

[insomniac_ in reply to PMRpro]

Yes, I live in Italy, in a very small rural town. (which I guess makes things even harder 😕 ).

I'm aware there might be other conditions - but my doctor seems very sure nothing is wrong because my MRI was perfect. He doesn't even want to consider the possible sinusitis.

I really don't know how to proceed. I tried to research my symptoms on my own (which is something I usually try not to do) and the only answers I found were temporal arteritis and occipital neuralgia, which seems even more unlikely because I have no neck pain whatsoever.

[PMRpro Ambassador in reply to insomniac_]

Where? I was hoping you'd say what region at least. I live outside a small rural town in Italy - but have a top notch rheumatologist in the PMR/GCA field as head of rheumatology for the region. There is also a very good former Primar whose hobby was GCA and who is still in private practice.

[insomniac_ in reply to PMRpro]

Oh, sorry! I live in Liguria, specifically in the province of Savona. Savona's hospital is very well known for its cardiology department, but as far as I know there is not much on rheumatology, but I've probably haven't researched well enough.

[PMRpro Ambassador in reply to insomniac_]

I know a lot of Italians use us for health checks and being a ski region our orthopaedic unit is very good - bunions and joint replacements in spring and summer - not sure how easy that is due to Covid,

It's a fair way from Liguria to Alto Adige - though maybe worth bearing in mind.

[insomniac_ in reply to PMRpro]

I will definitely keep that in mind, I have a friend who lives nearby so the trip isn't a problem. Thank you for your help.

[PMRpro Ambassador in reply to insomniac_]

The rheumy is Christian Dejaco and the retired guy is Dr Weger Seigfried if you need to contact them

[123-go]

Hello, insomniac. I would like to say how sorry I am that you have these unresolved health problems. Although I'm unable to give any informed advice, it does seem that your doctor is being negligent by brushing off your concerns. Even though your scans haven't shown anything of significance, you still have these headaches, blurred vision and eye pain, etc, so there must be a cause. Perhaps you could, respectfully, tell your doctor that all these symptoms are impacting adversely on your daily life and as he cannot find the reason behind them, will he refer you to someone who may be able to help. To be frank, you do need answers.Please don't apologise for posting here. People come on here with many diverse problems, some major, some minor and some in between. No one will judge you.

I wish you well.

[insomniac_ in reply to 123-go]

Thank you for your kindness, I really appreciate it. As you've suggested, I talked to my GP and insisted a lot - he finally gave in and sent me to do a few tests. We might have found the answer, which is not GCA, but POTS, which is still something that can be treated. Thank you for your patience. ❤️

[123-go in reply to insomniac_]

I'm so glad to hear that your GP has listened and responded to your concerns and has sent you for tests. You did well to stand up for yourself and insist on further investigations. If you do have POTS, as you say it is treatable and you have my very best wishes. There is a POTS community in Healthunlocked UK where you will find lots of support if need be.

Thank you again for the update.

Take care and stay strong. 💐

[SnazzyD]

Hi,It’s awful when one knows there is a problem but one is told it’s not real. My teenage years were spent with dire headaches and weird symptoms all over my head including my eyes. I failed my A level exams as a result. Turned out when I was 19 that I had a hidden cyst in my neck from a congenital defect called a branchial cleft cyst that was only obvious when it finally swelled. There are other types of vasculitis you can get at your age too. Where exactly was the MRI done?

Also, we aware that daily pain killers can cause headaches

mayoclinic.org/diseases-con...

[brambles22]

'One thing I should mention though, is that the headaches go away with over the counter painkillers. Be it aspirin or ibuprofen, they work and the headache subsides.'In my experience they were absolutely useless in dealing with the pain. The only thing that got rid of the headaches was 60mg of steroids.

[supersayan]

Did you get blood work done 2 specific markers ERS AND CRP WILL BE HIGH this is a indicator of GCA. I'm already on this road ,for me it looks to be T N but have to take Tegretol for 4 weeks to see if it elevates my symptoms.

[PMRpro Ambassador in reply to supersayan]

Not necessarily - up to 20% of cases of PMR and GCA have ESR and CRP that are within the quoted normal range - although that doesn't always mean they are not raised for that patient.

[supersayan in reply to PMRpro]

So I guess that means I've either got GCA or TN I guess we'll find out after 4 weeks of Tegretol as I start feeling better than its TN if it don't start feeling better than it means it's GCA and then I have to go on steroids I'm guessing

[insomniac_]

Hello everyone, sorry for the super late reply. I just wanted to update my situation in case someone reads this post in the future, and also because I don't want you to worry about my whereabouts. x)

My doctor thinks I might have POTS. I've ran some tests in these days - including a tilt table test - I still need to have the results for some, but in the meantime he suggested the possibility of POTS and I think I agree. It explains my sudden increase in heart rate when I get up, the dizziness, the pressure and the constant fatigue. Apparently this condition can do all of that your body and much worse.

So if anyone happens to read this, be sure to mention this possibility to your GP. It's still a rare disease, but one that you might want to look into. I will still keep you updated because I'm still waiting for my CRP results. Thank you all for your help.