New Here ... not diagnosed yet UK

thanks everyone for suggestions. We would really appreciate your thoughts on this - our daughter was checked 2 years ago for intra cranial hypotention at the headache clinic with an eye exam - so there was not any eye problem and the consultant said no IHH. She didnt have a lumbar puncture this was all through the eye test. We have wondered since as she hasnt got better, if you can have IHH but it not show in the eyes?
Can someone help us understand this paper on jugular venous compression - does the venous compression give IHH but it isnt measured in the same way as IHH normally is( to get that diagnosis?) it is saying that the venous compression wasnt there in the IHH patients, but was in the ES patients - so is this a case of depending where they look they either see or dont intracranial hypertenion?

This is beyond my level of knowledge. I didnt have the compression so I dont know much about it. Peony it sure sounds like you have a neurologist who is doing a great job at exploring all the options to get to the bottom of this and also getting set up with Dr. Axon. You will get there, we are all here to support your journey.

If veins are compressed by the styloids (or anything else), then the blood can’t drain from the brain, so the pressure increases inside the skull. Symptoms are headache, pressure in the head & ears, off balance feeling, brain fog, fatigue, not being able to tolerate lying flat, tinnitus & more. If the pressure is very high, it can press on the optic nerve & cause damage to eyesight. It’s usually diagnosed through a lumbar puncture which checks the pressure in the CSF (Cerebro-spinal fluid).
Not sure if it was a mis-type or if you’ve misunderstood, but Intracranial Hypotension would be low pressure in the brain- quite often caused by a leak. It causes headaches again, but with this the headache is worse when upright, & eases when lying down. Dizziness, fatigue & tinnitus are also symptoms, so similar, but the difference is whether the symptoms are upright or lying down.
I’m surprised that they only checked the eyesight & did a diagnosis on this alone!
Intracranial Hypertension can be caused by other things, & can be idiopathic- no known cause- there are sites which as helpful with more info, here’s a link to one:

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My understanding of the paper is that they evaluated patients with IH to see if there was venous compression by the styloids &/ or C1 process, & they found surgery helped these patients. They used those with IH but no compression of veins as a control group, like I said in the reply above; venous compression isn’t the only cause of IH, sometimes doctors never find a cause, & shunts can be used to decrease pressure.
Sorry- forgot to answer but yes, you can have IH symptoms but no damage to the optic nerve- I had mine checked & the nerve was fine, although I did have spells of blurred & double vision with one eye.
I hope this helps, & hasn’t confused you any more?!

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Hi peony, welcome to the forum!

Hypotension would be low pressure but often the symptoms are very similar between high and low pressure, like Jules said. My dr believes I have intracranial hypERtension (high pressure) due to my styloid compressing my jugular vein on my right side. But yes it can also happen without a known cause (idiopathic intracranial hypertension) due to veins being narrow for whatever reason, treatment for that is a stent typically or sometimes diuretics are used. My dr had my eyes examined to see if my optic nerve is inflamed — thankfully it’s not, but my understanding was this eye exam is not a diagnostic measure it is more a precaution as the high pressure can lead to vision issues and even permanent vision loss if not treated.

My doctor ordered a vascular ultrasound of my neck which showed the blood was rushing much faster than it should have been. However Ultrasound is not the perfect test and a CTV or cerebral angiogram will show what is going on in more depth. My doctors (ENT/head and neck surgeon, and a neuro interventional radiologist) prefer the angio because it shows the pressures of the veins and provides more info. I will be having that done Oct 2. I hope you can find some answers from Dr Axon!! Good luck!!

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oh dear, I am confused , hypertension, hypotenison, so the eagle trapping lets say the internal jugular vein - would give hypertension, is that in the vein the tenison? and the IHH is in the head in the CSF, so they are in different systems really? but the confusing because they both can be called hypertension intercranial? We are just perplexed, as looks like we really need to rule out eagles ( vascular by sound of things), yet if it turns out to be the case then hypertension there but it was dismissed 2 years ago ?? Unless the thinking was you had to have eye problems to have IHH? and this has changed more recently maybe?

Thanks Blossom ( lovely name btw) , you were so lucky your dr seemed clued up and tested the pressure of your veins, pretty rare by the sounds of things for them to know this. Are you in England ? did you ever have a lumbar P? good luck too, when did you start to look at eagles? did you find this yourself?

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Yes i guess it could be that if there was nothing wrong with the optic nerve they did not see it as a pressing matter? That is the main risk of the increased pressure. It’s all in the head as it relates to CSF leaks and intracranial hypertension, whatever the cause. Intracranial hypertension is increased pressure in the head. Like Jules said the blood can not drain properly increasing pressure in the brain/head. It doesn’t really matter what’s compressing the vein, whether it’s from narrow veins or the styloid, the results are similar however the treatment would be different. For idiopathic intracranial hypertension (no known cause, perhaps just narrow veins) the treatment my dr described is a stent or shunt to open the vein or Diuretics are sometimes used. For vascular Eagles the treatment is usually just removal of the styloid. For a CSF (cerebrospinal fluid) leak, ideally they would repair the leak. If there is a leak my understanding is the body can sometimes overproduce CSF fluid that then results in high pressure sometimes or low pressure. At least one member here with vascular Eagles and some other complicating issues has also had a balloon put into her jugular to open the vein up, but this hasn’t been a thoroughly researched treatment.

I am in the USA in Colorado. I got so lucky. I have had headaches for years (right side only behind eye, diagnosed as migraines previously) but saw a PCP in March for what I thought was tonsillitis. I had pain in my throat, almost like something stuck in my throat on right side, ear pain, neck pain, shoulder pain, tingling in arm. I took antibiotics and steroids and nothing helped. My partner sees an ENT skull based surgeon who has helped him a lot with his complicated medical issues so I went to him next. Little did I know he is an expert with Eagles and intracranial hypertension, several people on this forum also see him. First he treated me with more antibiotics and eventually thought maybe I had salivary stones due to the location of the pain. He ordered a CT without contrast and that showed nothing wrong with my salivary gland but he immediately brought up my styloid and eagle syndrome. I googled and found this forum. I had the vascular ultrasound done and an eye exam after the ct, ultrasound showed jugular vein compression, eye exam showed nothing really. I am having the angiogram next to map the veins in my head and neck and take a closer look. Never had a lumbar puncture. Last meeting I had with my dr he again said he suspects Eagles as my right styloid is so long and the ligament appears to be stretched over my arteries. He again mentioned surgery as a solution and that he would likely do the surgery with the doctor performing the angio (neuro interventional radiologist). I was put on a blood thinner to help my blood travel through the vein easier in the meantime and that has helped my pain TREMENDOUSLY. I have a few bad moments, sometimes pain flares in the evening, but I would say pain reduced 75-80 percent just from the blood thinner. No side effects. Don’t have to take ibuprofen or Prescription pain pills anymore, just the occasional Tylenol. It is certainly not lost on me that I am very lucky to have found him and to live in a city with a doctor who “believes” in Eagles. If a doctor is on the approved list here, chances are good you will get some traction with them and they will know what to do next. If you can see Dr Axon I think you’ll be in good hands and he can try to get to the bottom of what is going on. It’s all very frustrating and lots of self advocacy required (I’ve had my moments of having to self advocate as well, even with knowledgeable doctors, as we are just one patient to them and they have many others to take care of. They have an idea of what it feels like, but ultimately do not feel the pain or know what it’s like to live with that pain day in and out.) It is frequently said here that the squeaky wheel gets the grease! So just keep at it, and don’t give up!


Hi Peony -

Here’s a summary:

Intracranial Hypertension is caused when blood flow away from the brain is partially or fully blocked. In the case of ES, it’s caused by the internal jugular vein(s) being compressed by the styloid(s). The extra blood volume in the brain causes “high (hyper) pressure” in the skull.

Intracranial Hypotension occurs when there is a CSF (cerebrospinal fluid) or other fluid leak which causes “low (hypo) pressure” in the skull.

Your daughter’s symptoms align more with intracranial hypertension than with intracranial hypotension.


Hi Peony,

The lingual artery branches off of the internal carotid that supplies blood to the tongue. That artery can be compressed by the greater horn of the hyoid bone. That could disturb blood flow to the tongue. This would probably be accompanied by carotid pain. As far as drawing a nexus with ES, its within the realm of possibilities to have hyoid bone dysfunction with ES.


+does csf go into the blood( veins) ?

The CSF system & the blood system are separate; Intracranial Hypertension can be caused either by too much CSF which puts pressure on the brain cells, or too high a blood pressure, which does the same. So two different causes…or no known cause- idiopathic- just to add another one to the mix! I don’t think that even a couple of years ago the only way to diagnose IH was by checking the optic nerve, I think unfortunately your daughter’s symptoms were not investigated properly & taken seriously :unamused:
I hope this makes sense?

Jules, can you have low blood pressure generally, but high just in the area ( like where the eagles is?)
Good news this afternoon we got the confirmation insurance will pay for the Upright mri, and have contacted our neurologist about Eagles question - we just feel time is going by and want to get it ruled in or out. I did find some very interesting articles on IHH and the way it can present, even said ’ back pain’ can be part of, which we have never come across before, I think you may well be right , unfortunately our daughter may well have been missed here,it doesnt bear thinking about … well we will see hopefully in the next few weeks one way or the other, we just want to get to the bottom of things and get her relief.

here 's the article;

‘Headache is the most common presenting symptom of IIH, which can be highly heterogeneous, often described as daily, bilateral, frontal or retroocular. Features consistent with migraine, including unilateral throbbing, with nausea and photophobia are also reported. 44 Back pain , neck pain and radicular pain frequently occur.’
'Head end of the bed should be kept elevated at 15–30 degrees with the head in a neutral po-sition to enhance cerebral venous drainage and to promote the circulation of CSF from in-tracranial to spinal compartment. ’

‘Occult biomechanical ICH may have severe and long-lasting consequences for the patient and thus its detection, and distinguishing from the “common migraine” is necessary, so that the patient may receive proper treatment.’ thought this paper was very good especially for new people

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Hi Peony,

Thank you for the links. Interesting & useful information for sure!

Peony, My understanding is that Intracranial hypertension is not really related to overall blood pressure. The new PCP I saw recently seemed to think it is just high blood pressure when I mentioned it. It’s not. My blood pressure is always normal when checked and it’s low sometimes even. The specialist treating me for it has never even checked my blood pressure and doesn’t seem to think it matters at all. I do think high blood pressure can cause ICP; not the reverse though.

Also yes the CSF system and vascular system are separate however “ It is also believed that CSF circulates through the ventricles, the cisterns, and the subarachnoid space ultimately to be absorbed into the venous blood at the level of the arachnoid villi. Minor portions of CSF may be drained into the cervical lymphatics that run via the perineural spaces of the cranial nerves.” from this study:

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I have quite low blood pressure, so yes, you can have low bp & IH
Thank you for the links, will have a read later!

We ve got a zoom consultation with Dr Axon tomorrow afternoon! Don’t know if he will be able to imply in that what he thinks, or will need to do the scan first? Of course we cant say who recomened us as we dont have real names :smile: but will say from the forum! will update tomorrow - fingers crossed for some direction :four_leaf_clover:


That’s great news!!! So wonderful you could get in quickly with him. Hoping you will finish the appointment with a plan to move forward and find some relief!

I would think that he’ll want a scan first, but he can give you more info about the possible IH diagnosis.
I hope he doesn’t mind being recommended on the forum!

Hi Peony

I have just been reading all the posts on your daughter. I am so sorry that she is struggling.

I am wishing you all the success for your appointment with Mr axon tomorrow.

I just had my Ctv results from Addenbrookes and have quite significant bilateral jugular vein compression from c1 and styloids

Worse on my most dominant side which has the longer styloid.
Meeting with Mr Axon soon to discuss results/next steps

I also had a vascular ultrasound which showed high velocities on my worst side. So I’m putting all the pieces together

I have so many debilitating symptoms but my worse one’s have to be this horrible sucking and blocking feeling in my head and eyes,
Derealisation, visual disturbances, blocked/popping ears etc.
If I lift or I am more active I will go in to severe presyncope states. I can’t even describe how bad I get but I’m that spaced out it’s unreal. Literally feels like no flow is getting past my neck to my head and I’m going low and loosing all energy and my vision is like I’m drugged up. I end up passing out to sleep when it gets this bad.

I have tinnitus and whooshing etc and pulsing vision. I sleep on a bed wedge and avoid caffeine.

However what I will say is that approx 6 months in to being really unwell my nose started leaking clear fluid. So as you may have researched, prolonged untreated high pressure can result in secondary csf leaks which no doubt I have a cranial leak. This sometimes confuses the picture as I can cycle sometimes in to low pressure “hypotension”

Just thought I would share.

Good luck for tmrw. Keep us posted x