Hi everyone.

I've had an undiagnosed illness for 5 years resulting from a virus/infection I took back in 2016. This illness started suddenly with the virus and has only been steadily getting worse, with nothing I've tried having any effect at all on the symptoms or their progression. Most of my symptoms primarily affect my brain/head and arn't causing much physical complaints (other than general tiredness and weakness). My worst symptom of all is a severe, steadily worsening brain fog and anhedonia/apathy (which fits the description of "bradyphrenia"(progressive cognitive slowing), which forced me to give up college and work the day that it happened. There is also this horrible discomfort in my head all the time that seems to accompany the brain fog and my other head symptoms.

One of my main symptoms just now is a severe pain in my head when I try to rest my head on a pillow when I sleep. This is a short-lived pain that very quickly builds up and becomes unbearably excrutiating (worst pain imaginable) on any part of my cranium that's taking any kind of pressure, with the back of my head being affected the worst. Resting my head in certain positions will also cause this pain on the opposite side and feels almost as if my brain is being pushed against the other side of my skull. Similarly, pressing on my lower chin will cause this pain on the top of my head.

My only option I have to be able to rest my head on anything and get any sleep is to rest the side of my face on a tightly rolled up pile of soft scarfs, so that my head is raised up and my cranium isn't in contact with anything. Resting areas of my face that are on the opposite side to any area of my cranium also causes this pain, so I often have to keep trying different positions untill I finally find one that isn't causing any pain, which is generally the side of my chin or cheek areas. Sleeping like this is very uncomfortable and my face always hurts the next morning

I get episodes which last about a month where these symptoms get particularly bad. During these episodes, other symptoms I get which accompany this pain include loud ringing ears (like I've been to a rock concert), a wooshing noise when I rest my head in certain positions and pains in the extremeties of my skull (expecially the crown) which feels like something is cut and bleeding. I can also get feelings of dizzyness and vertigo and flashes in my eyes (when closed).

Allowing the pain to build-up too much (lying on a painful area of my head for too long) during these episodes causes a sudden, severe stab of pain, followed by sudden loud ringing in ears (like a bomb just exploded next to me) and a feeling of hot liquid dripping down the side of the head where the pain came from.

Given what I've said, I am now suspecting that I could have some form of viral induced Intracranial Hypertension. Other than IH, I currently can't think of any other explaination for why I would be getting head symptoms like this. And as I said. most of my symptoms are either brain or head symptoms, and there's no major physical complaints like you would generally get with complex chronic illnesses like ME/CFS, Fibromyalgia etc.

Anyway, if anyone here has any thoughts to share on this, it would be greatly appreciated, thanks!

Hey Sean,

Welcome to the forum. Your symptoms sound awful. Heartbreaking. Have you had these symptoms investigated? I would be tempted to go to A&E and describe your symptoms to them. At the very least get an eye test. An OCT will give a 3 D view of your optic nerve head. Raised intercranial pressure can often be detected by this means. Most Specsavers have an OCT and don't charge for it. Though an Independent Optometrist, at greater expense, will have more time to deal with you. Both are likely to refer you, urgently, for further investigation given the severity of your symptoms.

Take care mate,

Atty

Hi Sean,
Welcome!

You must be struggling hard with the very troubling symptoms you describe.

In the previous post Atticus asks if you've had these symptoms investigated. I was wondering that too. Over the last 5 years you may have seen some doctors about your symptoms, or no?

Have any doctors offered any useful suggestions about what might be causing your symptoms?

I hope that you'll find some answers soon.

Hi Atticus and Agate,

The doctors I've been seeing throughout the years have been doing very little to investigate my condition within 5 years I must say. I did have a CT scan a few years back which was normal. Then I went to a neurologist who done a quick physical examination which was normal of course. Then I got sent to a psychologist who just wrote me off as having a somatic disorder, despite reporting these head symptoms to him. And it's taken around 6-8 months or more for each referral or specialist appointment which is the main reason I've gone 5 years with little investigation being done and no progress made. And in between my ridiculously long waits for specialists who turn out to be no help to me anyway, I'm seeing GPs who either brush my symptoms off or assume that I have an illness like ME/CFS, Fibromyalgia etc and act accordingly. The last one I seen recently suggested that I went to a pain clinic for these head pains that I speak of and didn't take me seriously at all when I mentioned having suspected IH.

It's beyond frustrating to say the least and just want to find a way out of this state of limbo I'm in. I was 22 when this happened, I'm 27 now and feel like I've lost out on a good part of my life because of this. And I reckon it could have taken months, not years, to get to the bottom of this.

I am now waiting on word to seeing another neurologist (which my GP can't promise anyway, since I've seen a neuro previously), but I'm thinking now that I probably should just go to the A&E with these symptoms and see if they would be willing to do a lumber puncture.

I'm due an appointment with my optometerist just now, so I'll definitelly ask about getting an OCT done. I imagine he would refer me right away if I report these symptoms to him. I clearly have some issue with my peripheral vision going blurred and feel as if in looking at the world through a pair of steamed up goggles I can't take off. Since my vision is still 20/20 however, I'm not sure if this is eye or brain related, hopefully I find out soon.

Hi,

I intended to write a longer reply this morning, but I've been called into work. Given the pains in the crown of your head and tension type headaches, have you considered Occipital Neuralgia? I wonder if you have a tight neck and shoulders that is causing referred pain in the muscles that surround the skull. Check out the following link.

Head and Neck | The Trigger Point & Referred Pain Guide

Take care,

Atty

Hi again Atticus,

I've looked up just about every kind of headache that exists as far as I know and mine don't seem to fit the description of any of them, especially in terms of the type of pain I'm experiencing which is nothing remotely like your common headaches like tension, migraine. And I don't have a tight neck of shoulders with my headaches, although I sometimes get a sudden stiff neck that comes and goes abruptly when my condition fluctuates.

Generally, the pain I have in my head all the time feels like stinging and burning directly underneeth my skull all the time. I often like to say that this feels like my head is filled with hot acid thats burning my brain. And of course, my entire cranium feels like this all the time. This pain isn't unbearably painful though and more of an annoyance compaired to the other head pains I got. My issue though is that this pain seems to be permanent, 24/7 and never goes away.

The pain I get at the crown and extremities of my cranium is a stinging and prickling pain, almost like something is cut or bleeding underneeth my skull. This only happens when my symptoms fluctuate and the pressure in my head seemingly increases.

The other pain is a short lived pain that only happens if my head is resting on anything. It's so severe that I end up jolting my head up off the pillow and is almost like burning your head on an iron or hot stove. And as soon as I take my head off the pillow, the pain instantly disappears. I also hear some slight cracking/popping noises in my head when this pain is being agrivated.

So far, I can't think of anything other than IH causing these head symptoms. Although, I'm not quite sure if you could spent 5 years with something like this untreated, unless I'm one of the first.

Anyway, thanks for the link, I'll be sure to check it out.

Hey Sean,

I have to admire your fortitude given your life changing chronic pain and the consequences of that. I don't think I can offer a suggestion that you have not already investigated yourself. However one thing I would say is that with the NHS, you have to be assertive and demanding.

Let us know how you get on with the Opticians.

Best wishes,

Atty

Hi again Sean,
I hope you get a consultation with another doctor for a second opinion asap.

Some of the symptoms you describe on your other thread are concerning as well. To be more specific, they are your bouts of rapid heart beats, chest pains, breathlessness etc.. It concerns me that some (or all) of these other signs and symptoms you described could be contributing to your head pain issues (or vise versa) and not necessarily separate conditions.

Hi again Lara,

I'll call my GP tomorrow, see what's happening with the neuroimmunologist I'm seeing and push to get the ball rolling again with my investigations. At least my new GP seems genuinely concerned and agrees that more should have been done to investigate my issues over these years, especially since I'm continuing to deterioratie with my condition.

Yep these sudden SVT episodes in my heart are very concerning, given the fact they come on abruptly for no apparent reason. Not to mention the breathless, weakness and rapid weight loss (I'm almost below 8 stone now).

I'm still pretty sure all my symptoms are result of the virus/infection I took in 2016. I'd say most of them are the result of my condition being left undiagnosed and untreated for far too long. And I know for sure that conditions like Post-Viral Fatigue, ME/CFS, Fibromyalgia etc don't lead to continuous, perminant degradation like this.

As I said previously, my only symptom at the beginning (besides the virus) was this severe, perminant brain fog which left me more or less incapacitated mentally. My GP at the time just dismissed this symptom, ignored concerns about it getting worse (or blamed it on stress after failing college) and I went many months with no tests or investigations being done. If it weren't for this and I was investigated much earlier, my prognosis could well have looked better with this.

I do appear to be having some fairly obvious symptoms of intracranial hypertension though, especially that 'worst-headache-ever' pain when putting any pressure on my head, so will definitelly be getting that investigated. Hopefully I can figure out what could have led to a problem like this and get further to the bottom of this condition I have.

Hello Sean,
I hadn't seen you post again for a little while.

I had been wondering how you're feeling there and if you had any help from your new GP or Neuroimmunologist if you've seen them yet.

Hopefully you're feeling a bit better than you were and that the pain has calmed down.

Please let us know how you are if you get time to reply.