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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ncb | @ncb | Mar 28 8:58am

In reply to @wmzemka "Have you been evaluated for spontaneous intracranial hypotension? Your symptoms sound like my daughter’s." + (show)

Your response is similar to mine: idiopathic intracranial hypertension. So far, neither condition has shown up much in these Mayo Clinic support groups, yet IIH has been linked to both Covid and a lawsuit filed against Bayer Corp for IIH caused by the Mirena IUD. https://www.forbes.com/advisor/legal/product-liability/mirena-iud-lawsuit/
For me, IIH led to a spontaneous cerebrospinal fluid leak which was plugged and implantation of a VP shunt.

cjankowski99 | @cjankowski99 | Mar 28 9:18am

I have had same symptoms I have intercranial pressure CFS leak. You may want to contact a neurologist I am in touch with the neurology team at Duke Medical Center in North Carolina and John Hopkins and Baltimore. Keep me posted.

lkoch | @lkoch | Mar 30 6:51pm

I started with pressure in back sides of my head, numbness across forehead and down left side of face, excessive brain fog, loss of appetite and weight loss, anxiety and depression in Nov 2023. No headaches. Went to all my doctors. Had MRI, MRA, EEG bloodwork including Lyme and Lupus. Everything came back fine. Neurologist diagnosed silent migraines and put me on Depakote ER. I don’t present with silent migraines and a few of my other doctors are skeptical. Some symptoms have become less, but over all I still feel very unwell. I don’t like being on Depakote. I think it gives me side effects. Other people have told me it sounds like long Covid. I have become depressed and spend a lot of my time indoors. Does this sound like something others have experienced?

ncb | @ncb | Mar 31 8:41am

In reply to @lkoch "I started with pressure in back sides of my head, numbness across forehead and down left..." + (show)

Yes, your description - minus Depakote and substituting weight gain for weight loss -aligns with my long history of what was eventually diagnosed as Idiopathic Intercranial Hypertension. IIH led to a cerebrospinal fluid leak and surgical implantation of a ventriculoperitoneal shunt. IIH has become better known because of its association with the Mirena IUD (I do/did not have one) and the lawsuit against Bayer Corp. - and that raises the question for many women as to whether hormone therapy may be contributing to IIH and related symptoms. Another aspect to investigate might be mast cell activation and dysautonomia.

lkoch | @lkoch | Mar 31 11:59am

In reply to @ncb "Yes, your description - minus Depakote and substituting weight gain for weight loss -aligns with my..." + (show)

Thank you for sharing. I was wondering if you ever had any head pain or other pain in general? I experience zero pain, just numbness and pressure.

ncb | @ncb | Mar 31 4:58pm

In reply to @lkoch "Thank you for sharing. I was wondering if you ever had any head pain or other..." + (show)

Have experienced all of the above over the past 40 years almost in cycles, but overlapping - complicated by back problems and sciatica. Another factor to consider: what elevation are you? I had been living at 9300 ft elevation in the Rocky Mountains but after 6 yrs of hypoxia, head pressure, numbness, and erratic blood pressure, moved to 5100 ft elevation and was doing much better for a couple of months but am now dealing with pressure, numbness, and fatigue. Had a Stealth Brain Scan this morning (on Easter Sunday!!!) to see what's going on "upstairs."

willows | @willows | Apr 1 11:27am

The darkness around the edge of your eyes could be a symptom of glaucoma (eye pressure). Have you had your eye pressure taken and had an examination by an ophthalmologist(medical eye doctor)?

buzzingbody | @buzzingbody | Apr 2 2:20am

In reply to @ncb "Have experienced all of the above over the past 40 years almost in cycles, but overlapping..." + (show)

Please let us know what the result was of the scan. I also have the head issues combined with back and leg problems and I feel they are related; my symptoms wax and wane over the day and also over longer periods of time but they always get worse or less worse at the same time. I tend to wake up at 4.30AM and right after that it feels like hot liquid is running down my legs to the soles of my feet, and at the same time my head starts pounding. After that I can't get back to sleep.

Altitude is no factor in my case but season/weather is, it's always worse from October till May (cold, damp, windy, gray skies for days in a row).