Intracranial pressure, anyone?

[Tella]

Have u been diagnosed with one? If so how did it happen and how did u treat it? It seems I may have it and it can be dangerous but hard to diagnose and treat ahhhh

 

[FMMM1]

Have u been diagnosed with one? If so how did it happen and how did u treat it? It seems I may have it and it can be dangerous but hard to diagnose and treat ahhhh

Very interesting area; I think Jen Brea may have had this/has this. I think you're correct about the difficulty in diagnosing intracranial pressure. Also, not clear on treatments, possibly a device (shunt) plus pressure regulation valve.

 

[Wolfcub]

I was concerned about this due to some symptoms last year, but fortunately a neurologist examined me thoroughly, and a CT scan confirmed it wasn't happening. I am glad.
It can be seen through close and deep examination of the eyes....if you know what you're looking for, so I was told.

 

[FMMM1]

I was concerned about this due to some symptoms last year, but fortunately a neurologist examined me thoroughly, and a CT scan confirmed it wasn't happening. I am glad.
It can be seen through close and deep examination of the eyes....if you know what you're looking for, so I was told.

Interesting i.e. you can examine the eye's to establish whether there is a problem with intercranial pressure.

 

[Wolfcub]

Yes, it's not so much the features of the eyes themselves, but what can be seen through them and behind them. But only a neurologist (or possibly a good opthalmologist) would probably be able to spot it (or if it's absent -not, as the case may be.)
The symptom they are looking for is Papilledema, which comes along with the package of symptoms for raised intracranial pressure.
There's something briefly about it here

 

[Celandine]

There's this small study about intracranial pressure without papilloedema in ME/CFS patients which is very interesting:
https://www.healthrising.org/blog/2...rebral-spinal-fluid-chronic-fatigue-syndrome/

 

[Wolfcub]

That's very interesting @Celandine No Papilledema yet high spinal fluid pressure. It's wise to keep our minds open.

 

[kangaSue]

Interesting i.e. you can examine the eye's to establish whether there is a problem with intercranial pressure.

Yes, it's not so much the features of the eyes themselves, but what can be seen through them and behind them. But only a neurologist (or possibly a good opthalmologist) would probably be able to spot it (or if it's absent -not, as the case may be.

This is an area of interest for Dr Diana Driscoll (author of the 'Driscoll Theory'), an opthamologist who has POTS and EDS herself and has a POTS clinic.
https://potscare.com/about-us/
http://prettyill.com/ (there's a patient forum on this site)

 

[Celandine]

@Wolfcub Well, not even really high pressure, but more borderline normal/high, which is probably why no papiloedema.. Yet almost all the patients who had some CSF drained via the lumbar puncture reported relief from their chronic headache and also their fatigue. The relief was temporary as presumably the fluid built back up and the pressure increased again. But since the pressure levels measured would have no real effect on a non-ME person, as they were nearly normal, one has to wonder what it is in the ME patient that makes this mild pressure increase have such a devastating effect. Something mechanical elsewhere in the body? Neck?

 

[Tella]

This is an area of interest for Dr Diana Driscoll (author of the 'Driscoll Theory'), an opthamologist who has POTS and EDS herself and has a POTS clinic.
https://potscare.com/about-us/
http://prettyill.com/ (there's a patient forum on this site)

Interesting! Has anyone been to the clinic or knows how exactly they treat it? It seems they do standard tests, try to look for intra pressure, give u supplements but not conventional meds. Not sure what else is there to do? She says she and her kids got cured

 

[kangaSue]

@Tella Dr Driscoll sometimes posts here at PR under the name DrDiana but is also very involved in the patient forum at prettyill.com.

Here's one PR thread on the subject;
https://forums.phoenixrising.me/threads/pots-relief-could-it-be.42775/

 

[Chronically Auds]

Have u been diagnosed with one? If so how did it happen and how did u treat it? It seems I may have it and it can be dangerous but hard to diagnose and treat ahhhh

I have constant pressure headaches and pain at the back of my neck, base of skull. I am suspecting cranial cervical instability. As soon as I can travel safely (thanks covid19 for the delay ) I will have an UPRIGHT MRI scan and send it to Dr. Gilete in Barcelona. In the meantime, Tramadol/aset, Benedryl, laying flat, in a dark room, with noise cancelling headphones and ice packs are my tools. They only take the edge off my pain but it's something. Much , Auds