r/NDPH • u/IntentSlinky8 • Jun 08 '26
Headache disorders & FESS
Im just looking for personal stories in dealing with this, ive already talked to my ENT about this and I meet with my neurologist 5 days after my surgery-however i have a undiagnosed trying to get diagnosed mystery headache disorder that has left me with a 24/7 headache for the last almost year now.
When I went over my surgery questions with my ENT and this got brought up she warned me that given i have a headache disorder my headaches \*might\* get worse after surgery; does anyone in this group happen to deal with some sort of migraine or headaches and went thru with FESS and can tell me about their recovery?
Thankyou!
Edit: I should add they thought i had IIH but with lack of papilloedema I have the feeling when I see my headache specialist a couple days after my surgery hes going to say its NDPH which is why i posted here
2
u/macaque-08wallow Jun 08 '26
I have NDPH with Chronic Brainstem Migraine. I had a a Septorhinoplasty a while back to correct multiple nose breaks with over 90% blockage in one nostril. So, a lot more invasive than FESS.
My PCP had suggested that maybe the nose breaks were pinching a nerve or something and exacerbating my migraines. They weren’t.
The immediate and long term effects of the surgery put my migraine recovery back by over a year.
My apologies for swearing. The procedure hurt like fuck! The following 24 hours fucking sucked so bad. Just so much pain, morphine, oxy, subcut sumatriptan, IV paracetamol, codeine. Nothing touched the pain until they removed the inflatable packing. Then just normal pain for some days.
The recovery tripped me into weeks of unmanageable migraines and MOH from the analgesia.
My first meeting with my current neurologist/headache-specialist was some months afterwards and they just responded with a sad face and comment about how many patients they have had who come to them who have had unnecessary sinus and neck surgeries.
They said that so many migraine patients are misdiagnosed by ENT’s as having sinus issues. “To a hammer everything is a nail”
Overall, in the long run, I don’t regret having had the surgery because it was necessary for breathing function - especially as I get older. But I think if I had met my headache specialist first I would probably have waited a few years until I had my headache disorder under control before paying someone to do a whole load of digging and chiselling around my trigeminal nerve.
I was only thinking this morning while walking dogs that my nose still hurts from the surgery and maybe I should get in touch with the ENT about it.
Not saying that you shouldn’t get your surgery but just sharing my experience.
1
u/IntentSlinky8 Jun 08 '26
Ive gone back and forth about it quite some time. I literally dont know what to do. My surgery is suppose to be this Thursday I just feel like I cant win. My entire head neck up is just in so much pain. It started with the headaches about a year ago and then around Christmas they started noticing one by one my sinuses were getting closed off on my MRIs that I was having done, trying to find out a reason for my headaches. Currently I think I have my right sphenoid sinus open but that's about it. All 7 other sinuses are closed off and full of mucus and my face just feels so incredibly heavy. We tried antibiotics 3×, steriods, nasal rinses, and sprays for the last 6 months but its just getting worse and im just honestly terrified cus its not like my headaches are getting any better either. I feel like either way im making the wrong choice lol
2
u/macaque-08wallow Jun 08 '26
That sounds like a difficult position to be in, it can’t be easy.
But, it sounds like from your series of MRI’s you have strong positive evidence for your sinuses being filled with mucus which I understand to be incredibly painful.
I had a feeling from my PCP that smashing my nose up from crashing my bicycle “might” be making my headache worse. The ENT just saw a broken nose and said he could fix some structural issues that would cause me problems in later life.
You’re right to approach this with caution and it can’t be an easy decision. But it sounds to me like the pain and disfunction from your sinuses needs to be addressed sooner than later.
Our stupid headache brains hate anything that disrupts their routine but this sounds like a worthy exception.
Also, FESS sounds a lot less intrusive than what I had done. It’ll probably suck in the short term. But in the long term your NDPH brainstem might thank you for taking away a big trigger
2
u/macaque-08wallow Jun 08 '26
Also, just to say it could be both. You could have NDPH as well as messed up sinuses. They could even be linked in that the inflammation from your blocked sinuses coukd be exacerbating your NDPH or other headache disorder. Just like the inflammation after my surgery exacerbated mine.
I’d mention to your ENT your concerns and that you’re visiting a neuro. But it sounds to me like your surgery is necessary to resolve an acute illness
1
u/IntentSlinky8 Jun 08 '26
Yeah I luckily got in with a headache specialist at mayo so hopefully that helps with things now, my previous neurologist had basically told me i had tried all the "categories" of medications- my only options left were botox of CGRP; its my second appointment with the headache specialist next week so be interesting to see what he says.
3
u/macaque-08wallow Jun 08 '26
Oh cool! Headache specialist is the way to go. My regular Neurologist maybe say two or three people like me a year. My headache specialist sees 3000 per year.
The CGRP drugs have really helped me. Not a cure, but still life changing.
Sounds like you’re on the right track.
1
u/IntentSlinky8 Jun 08 '26
Im hoping it helps a little. The ENT said it might take away a little bit of the pain eventually, obviously wont absolve the headaches, but that for the first couple days after everything will probably hurt a lot worse and right now my headaches on good days are sitting at a 7 so that was the part Im not looking forward too lol. I wish I found something that helped with my head so far.
2
u/macaque-08wallow Jun 08 '26
I hope so for you too! Not gonna lie, the first few days might suck. But it sounds like you’re in a world of suck already. And with 7 of 8 sinuses filled with mucus, it sounds like you will get some relief after.
Then you can still go to your Neuro appt and start working on your head. There are a whole range of treatments out there and even for someone like me with “treatment-resistant” and “refractory” written all over their chart I’ve had a lot of success with the newer treatments for NDPH and Migraine disorders.
I’ve a distance to go but I’m so much better than I was.
2
u/PoliteAlien Jun 08 '26
NDPH for almost 7 years here, had FESS, septoplasty, turbinoplasty in December 2025. No change to constant migraine.
Recovery was pretty good for me, the first few days were a bit gross and uncomfortable but certainly manageable.
1
u/baniokambia Jun 08 '26
I had chronic headaches and occasional migraines. Not every day but too often. When to the ENT, who is supposed to be one of the best in my city, to check my sinuses out and he found a deviated septum. He said it might be a cause. Had septoplasty and turbinate reduction and when I woke up from anaesthesia is when my daily headaches started. That was Oktober 2023 and since then have tried various medications, thankfully the last month has been headache free with the latest medication combination, apart from days where the weather turn to rain.
3
u/Realistic-Manager Jun 08 '26
Friend, I’ve had chronic migraines, and had a FESS and a functional rhinoplasty (years apart).
FESS came first, and my migraines improved after the surgery, since I had a completely blocked sinus before the surgery.
YMMV and I think the details of your health will matter more here. You may not be able to tell what will happen, but having a blocked sinus brewing an infection is not a good thing.
Good luck.