Suspected Intracranial Hypertension for 4.5 Years

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Hi everyone. I'm 26, male and for 4 and a half years, I've been suffering severe, debilitating brain symptoms which have made my life practically not worth living anymore, without getting any closer to any kind of diagnosis or treatment.

This illness started as a sudden onset in June 2016 with what appeared to be some sort of virus or infection, accompanied by disabling brain fog or brandyphrenia (slow thought processing, often associated with Parkinson's).

The actual infection went away within a week, but the brain symptoms remained and just got progressively worse as the months went by. Then other brain and head symptoms started to slowly set in, and my illness started affecting other parts of my body as the years went on. My head is now in constant pain all the time and can barely think or function anymore as I continue to deteriorate with this illness.

Here are the symptoms in the order they appeared:

Sudden flu-like illness (at the start)

Sudden, severe brain fog and rapid cognitive decline (similar to bradyphrenia in Parkinson's)

Worsening tiredness and general weakness

Insomnia (random week-long episodes that come and go, I can either fall asleep easily or can't at all)

Worsening headache (often feels like a burning pain around the scalp)

Worsening vision issues (tunnel vision, however nothing actually wrong with eyesight)

Unrefreshing sleep

Heart arrhythmias (includes sudden SVT attacks and bigeminy)

Flat emotions/anhedonia related to cognitive problems getting worse

Bloated/distended abdomen (was previously slim)

Random muscle twitches

Severe head pain when resting head on a pillow (can also cause sudden stabs of pain, followed by sudden, loud ringing in ears (like a bomb or gun went off) and feeling of liquid dripping down the back of the head)

Feeling of pressure in head accompanied by pains

Constant ringing in ears (seems to fluctuate along with pains in head)

Horrible feelings of discomfort in head (like something is physically irritating my brain and causing all of my symptoms)

Various burning, pinching, boring and jabbing pains in head (feels like something underneath my skull is being torn, ruptured or bleeding at times)

Progressive muscle weakness and clumsiness

Exertional breathlessness ( when going up stairs or lifting objects for example)

Rapid weight loss and muscle waste ( I am now less than 8 stone)

Nothing I've tried in the past years has had any effect at all on any of the symptoms and they just gradually worsen with time. I also sometimes get episodes that exacerbate all of my symptoms at once, which can be scary as they start to affect things like my breathing and speech. The only thing I can take to get any kind of relief is codeine, which basically numbs my brain of all the horrible feelings in it.

After years of research on the internet, I'm beginning to think my condition could well be viral-induced intracranial hypertension. I've heard very little information on this, but know that it is possible and if it were the case, would likely explain all these head and brain symptoms Ive been getting. And the worse my illness progresses, the more the symptoms I'm having look like some form of IH caused by a viral infection. I'm currently going to see a neuroimmunologist who I hope has answers for me.

Anyway, if anyone on here has any thoughts to share on this, feel free to comment.

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  • Posted


    I have been experiencing some of the symptoms you are experiencing. Mainly constant debilitating head pressure in the head that never goes away for about a year, bad fatigue and the feeling of muscle weakness, brain fog, difficulty thinking and speaking. The pressure is in my eyes as well as in my head and I am also having gastrointestinal issues as well even after going gluten free after getting diagnosed with celiac disease. I can't work or go to school, so far we have hit a dead end, but recently my mom mentioned Chronic fatigue syndrome which causes many more symptoms then just fatigue. It comes about after a virus of some sort. Some people with covid get this, (Covid long haul), Chronic fatigue syndrome has been recognized recently by the CDC. I have been researching and there are scholarly articles talking about the potential correlation between chronic fatigue syndrome and Idiopathic Intracranial hypertension. People with Chronic fatigue syndrome also have head pressure, fatigue, there sleep is messed up, and they have other issues such as gastrointestinal issues. It is just a thought. I am also looking into cervical instability that is pinching something in my upper neck which could be causing CSF buildup. I have a stiff neck, and chiropractor visits with the use of a cervical traction machine has been helping me. Hopefully this information helps, but I am still not quite sure what is wrong with me, but you may also want to check out this chronic fatigue syndrome forum on

    I will pray for your recovery,


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