Head pressure is ruining my life

Posted by amandanap1 @amandanap1, Dec 1, 2023

Hello, im hoping that maybe someone can shed some light on this or offer advice if you have experienced the same thing as me.

For almost a year I have been dealing with unrelenting, severe head pressure. Not headaches, though I do get those sometimes. The head pressure is 24/7 and it lasts for months at a time, I get a week off, then it comes back even worse than before.

My symptoms:
head pressure
lightheadedness
vision disturbances (blurry vision, darkness around the edge of vision)
migraines
It feels as if my head is being squeezed and going to explode. It is extremely difficult to do daily activities, I cant concentrate, its taking my life from me. I have had an MRI, numerous CT scans and a lumbar puncture, all clear. If anyone has gone through something similiar and have found something that helps, I would love to hear it.

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tammyjbell | @tammyjbell | Dec 22, 2024

In reply to @cjankowski99 "Not usually an MRI is better" + (show)

I am being scheduled for an MRV. but not MRI??

tammyjbell | @tammyjbell | Dec 22, 2024

In reply to @ncb "Your response is similar to mine: idiopathic intracranial hypertension. So far, neither condition has shown up..." + (show)

Do you feel off balance? Dizzy?

ncb | @ncb | Dec 22, 2024

In reply to @tammyjbell "Do you feel off balance? Dizzy?" + (show)

Off balance? Yes! Dizzy? Yes and no - yes in the sense of wobbling but no in the sense of spinning.
Stealth scan months ago was okay so no surgical intervention was needed. Have been taking Stability and Enerchi (tai chi) classes to work on balance plus PT to strengthen hip, core, and back muscles.

tammyjbell | @tammyjbell | Dec 22, 2024

In reply to @ncb "Off balance? Yes! Dizzy? Yes and no - yes in the sense of wobbling but no..." + (show)

I don't know how to describe what I feel when I'm dizzy. Kind of like my head is heavy. No spinning. Just lightheaded maybe? I'm just so confused. I have no optoc nerve damage and it isn't swollen. So I was told no intercaranial pressure. But I have all the symptoms. But also partially empty sella configuration. But findings of bilaterial tranverse sinuses being small in caliber. And when I read about it, it talks about intercaranial pressure. So I guess I'm confused with all this newly found things

ncb | @ncb | Dec 22, 2024

In reply to @tammyjbell "I don't know how to describe what I feel when I'm dizzy. Kind of like my..." + (show)

Agreed - sounds like a lot of new information that perhaps the health care professionals don't understand either.
And what medical facility are you going to? Did I read that you are going to Johns Hopkins or was that someone else?

Sidebars: when my CSF leak was repaired, the right septum and sinus were "renovated" AND the doctors were in disagreement over whether the sella was empty, partially empty, or if there was a cyst in the way.

kdalda75 | @kndaustin71 | Dec 23, 2024

MRI with and without contrast

tammyjbell | @tammyjbell | Dec 28, 2024

In reply to @ncb "Agreed - sounds like a lot of new information that perhaps the health care professionals don't..." + (show)

Unfortunately I'm from western ny and never had an opportunity to be referred to mayo clinic or anywhere who could help me.

kdalda75 | @kndaustin71 | Dec 29, 2024

Do a self referral! My goodness if you are in NY there is Temple, John Hopkins Cleveland Clinic and the Research Triangle of Duke, UNC and Chapel Hill. I only wish I was that close. I'm not to excited about Mayo and all the negative experiences that I have heard. Sorry Mentors!