I haven’t been diagnosed with eagles yet? But I just wanted to check a couple of things. I am being investigated for a CFS leak, but they cannot find any evidence of this. What I think is happening is that I have high pressure headaches that then cause a leak, as this time I had fluid coming out of my nose. I should have collected the fluid, but didn’t really know what was going on at the time. I’m pretty sure my neuro in the UK will discharge me tomorrow. I noticed before my symptoms ramped up that my doctor said it was strange that he couldn’t find my one tonsil, and he asked me if I’d had it removed. They sent me for a scan with gel on my lymph nodes then said it was all okay. Could this be related to eagles? Also, are some of the consultants more willing to treat patients with intercranial hypertension? (Although this isn’t confirmed).
I did just reply with a private message, but I’ll say it again for others’ benefit too!
It’s common for people with IJV compression to have intracranial hypertension, & then if there’s any weak spots for this to cause a CSF leak, then causing Intracranial Hypotension, then the pressure gradually builds again to hypertension, & people can often have a constant cycle between the two! If there is IJV compression by the styloids, then it’s important to have this addressed first before patching leaks as they’d probably fail again…
Ideally a CT scan of the head and neck with contrast especially timed for showing the veins is needed, (CT Venogram) and hopefully this would show if there’s compression. I don’t know if your neuro will be willing to send you for this, or whether they would refer you to Mr Axon ideally- we suggest that members print off research articles to show their doctors is they skeptical (although this doesn’t always go down well!), this paper might be helpful as it is written by Mr Axon & describes exactly what you’re experiencing by the sound of it:
Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with Eagle
There are loads of papers about IJV compression in the Research Papers category, but here’s a couple of other articles/ info video you might find interesting:
A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle
Interesting Article by Kjetil Larsen; AAI/ CCI/ Jugular Outlet Obstruction - General / Research Papers - Living with Eagle
I would think that normally a neurologist would be the best person to treat IH, but obviously if there is a cause for it, as opposed to being idiopathic, then hopefully they would refer you on.
As tonsillectomy is a cause of ES, maybe that’s why they asked you about it?
Welcome to our forum, @Hamonrye! @Jules has given you great information & back up resources. I just want to add that intracranial hypertension to hypotension cycle has become known as Spiky-Leaky Syndrome - Spiky-Leaky Syndrome | The EDS Clinic. It’s often associated with Ehlers Danlos Syndrome but not always.
I hope you’re able to get an appt w/ Mr. Axon as he seems to be well versed with problems related to ES & internal jugular vein compression. Hopefully he would be able to diagnose what’s causing your symptoms.
Thanks for your message. I was first told I had intercranial hypertension 4 years ago by A&E, I was discharged and paid to see a neurologist who dismissed me from the CT scan. I then saw another neurologist last year when I was experiencing leak symptoms, who diagnosed me from consultation (he was really helpful). Prior to the leak symptoms I had a headache that felt pressurised. I was also leaking fluid from my nose. I didn’t associate that with the headache at the time and presumed it must be an allergy. Unfortunately, apart from brain thickening nothing as has been found on my brain MRI. I think this is because I leaked in November and by January I was feeling better. However, I feel very ill again now with constant head pressure and pulsatile tinnitus. I hope my neuro will listen tomorrow. I constantly feel sick and am practically bedridden. If not, I will ask him to refer me to Dr Axon or speak to my GP.
Thank you. I will have a proper read later. That’s really helpful of you. Do you have a Facebook group too?
There is a Facebook ES group but it is not associated with our group. I’m not sure how to access it. We have some members who are on both our group & the FB group, so maybe one of them can post a link to it for you.
I’m sorry for what you’re going through & hope you can have a good conversation with the neuro you see tomorrow as now you’re “armed & dangerous” with more information than you had when you first started on this journey. 