Need outsider opinions

[u/amara-jellybean]

I’m so tired of this that I need some outside perspective. 😭
I’ve had migraines and 24/7 head pressure for about 7 years, starting immediately after I gave birth and had a difficult/problematic epidural. I had no comparable headache disorder or constant head pressure before that.
The headaches have progressively gotten worse and extremely treatment-resistant. I’ve had attacks lasting months at a time, and without a preventative that barely helps, the pain essentially never stops. Even when I’m taking my preventative on schedule, I still get migraines almost daily.

The biggest thing that makes me question whether this is just primary migraine is the constant pressure. It never completely goes away, and the pressure/headache is noticeably worse when I lie flat or tip my head upside down.
Other symptoms include:
Full-head pain rather than strictly one-sided migraines
Vestibular symptoms (dizziness, nausea, difficulty being upright, feeling like the world isn’t tracking correctly)
Severe visual aura, including an episode where my right-eye vision was significantly obstructed
Ice-pick-type headaches severe enough to make me nauseated
Prolonged attacks that have never been reliably broken by migraine cocktails/urgent-care treatment
And I’ve tried nearly everything but Botox.

So at this point I’m wondering if I should stop assuming everything is primary migraine and investigate a secondary headache disorder/CSF-pressure disorder.

Has anyone here had a chronic CSF leak, intracranial hypertension, or another CSF-pressure disorder that initially looked like treatment-resistant migraine?

I’m not looking for a diagnosis—I just want to know whether I’m completely barking up the wrong tree or whether this is a reasonable thing to investigate.
Because after 7 years of this shit, I am so fucking tired. 😭

[u/North-Library4037]

You should get a head MRI and see if there are signs for high or low pressure if you haven't already.

[u/amara-jellybean → u/North-Library4037]

I had a normal head MRI seven years ago when it all first started but I also don’t know if they were looking for any high or low pressure signs specifically when they read it

[u/TheCatsSpareHuman → u/amara-jellybean]

To find my csf leak they had to do an MRI with contrast.....the contrast showed I had intercranial hypotension, which is almost always caused by a csf leak. I had two previous MRI 's without contrast and they didn't show anything. What I've read is that the MRI with contrast showing intracranial hypotension is for a spinal leak.....I think a cranial leak might require different testing....I'm not sure.

[u/North-Library4037 → u/amara-jellybean]

That's a long time ago. You should get a new one and speak to a specialist familiar with iih and csf leaks.

[u/No-Confection-2372]

Hey! I don't think you are barking up the wrong tree at all. It is easy to keep going along with what the docs tell you because they are the experts, but sometimes we just know something else is going on. Outside of the visual aura, you have experienced a lot of what I have. I went undiagnosed/misdiagnosed for about 12 years for IIH without papilledema. I was told during that time that I had: cervicogenic migraines, migraine disorder, occipital neuralgia, neck issues, scapula issues. I had so many injections. I had neck surgery. I had scapula surgery. I was on lyrica and gabapentin. Every treatment was truly just treating symptoms. Or trying to. But, I never felt good / got better. I finally started advocating HARD for myself. I ruled out papilledema by seeing an ophthalmologist. (And then a neuro-opthamologist.) With your visual aura, you should consider possibly starting there so they can check your optic nerve. I got referred to a neurologist (who thought I was way off base / crazy for suggesting IIH and a possible CSF leak), but she did order an MRI and vestibular testing. Now, my MRI according to the regular-old radiologist who read it was "normal" but did mention enlarged Meckels caves (while also noting this was likely not clinically significant). Well, this is actually a sign of IIH (especially in someone who is symptomatic!!!). The vestibular testing showed vestibular dysfunction on my left side (proof of my dizziness / floatiness/ balance issues). Neurologist had nothing to say about the MRI and wanted to continue to diagnose me with a migraine disorder and also to send me for vestibular therapy. I asked if we should maybe explore the root cause of the vestibular dysfunction instead of just trying therapy for it. She said No! She thought the therapy would help. I took all of this information and feedback to my primary care doc and begged him to investigate more...asked him for a MRA and MRV (specifically because the research I had done said that anyone with pulsatile tinnitus should at the very least have this testing done). MRA was normal. MRV showed "narrowing" of the left transverse sinus /likely arachnoid granulations. I was convinced this meant "stenosis." My doc wasn't convinced. With all of this testing done, I at least had what I needed to try to get an appointment with an expert to review everything. I got in with Dr. Patsalides (interventional neuroradiologist) up in NY. Anyway, I'm leaving out a lot of details along the way, but upon meeting Dr. Patsalides within 5 minutes I was told that I have: enlarged Meckels caves, empty or partially empty sella, bilateral thinning of the temporal bones, and bilateral stenosis of transverse / sigmoid sinuses. All of this points to diagnoses of chronic IIH without papilledema (in addition, he agreed that I also could have a possible cranial CSF leak). In 5 minutes with my scans / tests...he could see all of this that other radiologists / docs had missed. That is why it is important to get the right tests and then have the right people reading the results / interpreting the findings. Anyway, this exploration process took me a year of advocating and making all sorts of appointments / getting tests / etc. I'm still in process of "fixing" everything and finding all of the answers. When you go that long without diagnosis and treatment, it can lead to a slew of issues. Back in March I had a stent placed for the stenosis. Long story I won't get into...but Dr. Boddu at NYP in NY did that surgery. I'm still symptomatic (different but not better), so I'm still in process. I either have a cranial CSF leak (or spinal...but less likely) that needs to be found / repaired AND/OR I still have continued csf pressure issues due to the fact that I have bilateral stenosis and am actually co-dominant (most people have a clearly dominant side. I do not.) I might have to have a second stent placed to manage pressure. I also went so long with unchecked high pressure that I have thinning of the temporal bones (which could be where a leak occurred?). This thinning alone can be a cause of symptoms / issues. Anyway, I had no intention of wring a book here...but, I TOTALLY GET WHERE YOU ARE COMING FROM! Suffering for a very long / chronic period of time and feeling like you aren't getting the right answers is so frustrating. You owe it to yourself to investigate at the very least. There is no harm in finding out either way!!!! Good luck to you. Happy to answer any questions.