• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Question about brain fog?

Messages
91
When I have brain fog at the back of my head (base of my head near my neck) I can’t think, my memory’s awful and I generally have moments of complete disorientation/ confusion/ can’t hold trail of thought. My body feels inflamed. I feel high and stoned and it’s awful.

When i was getting better my brain fog was at the front/ top of my head and I just felt very fatigued (sometimes drunk) and nothing else.

I’m pretty sure I’ve relapsed / got glandular fever again (if that’s possible). So trying not to despair (although I feel absolutely devastated lol) but wondering if anyone has found the same thing re brain fog ?

Cheers.
 

Hip

Senior Member
Messages
17,824
How do you know where your brain fog is located?

Brain fog (cognitive disfunction) is a symptom ME/CFS patients experience mentally, not physically, and includes things like poor short-term memory, poor working memory, multitasking difficulties, problems recalling words or names, trouble concentrating, confusion and disorientation.
 

Wishful

Senior Member
Messages
5,686
Location
Alberta
I can't even tell which tooth is the one that actually hurts. Locating a feeling to a specific area of the brain is probably just a wild--and incorrect--guess. I suggest keeping the two feelings separate for your records, but don't put too much emphasis on the assumption of precisely where the actual problem is located.
 

Hip

Senior Member
Messages
17,824
I meant that was where the pressure is mainly focused

By pressure, you mean a mild dull inflammatory feeling in your head? Some ME/CFS patients feel an inflammatory feeling, in their head, such as at the back of the head near the nape of the neck.
 
Messages
91
By pressure, you mean a mild dull inflammatory feeling in your head? Some ME/CFS patients feel an inflammatory feeling, in their head, such as at the back of the head near the nape of the neck.
Yes exactly that!!! That’s how I feel
 

Hip

Senior Member
Messages
17,824
Yes exactly that!!! That’s how I feel

So if I understand you correctly, you are saying that when you have this mild dull inflammatory feeling at the back of your head, near the nape of the neck, then you experience brain fog symptoms.

Whereas when this inflammatory feeling is not present at the back of your head near the nape, but instead is located towards the front or top of your head, then you don't get any brain fog symptoms, just fatigue symptoms. Is that what you are saying?
 
Messages
91
So if I understand you correctly, you are saying that when you have this mild dull inflammatory feeling at the back of your head, near the nape of the neck, then you experience brain fog symptoms.

Whereas when this inflammatory feeling is not present at the back of your head near the nape, but instead is located towards the front or top of your head, then you don't get any brain fog symptoms, just fatigue symptoms. Is that what you are saying?

Yes exactly correct. Sorry I know it sounds so weird. I just wish it would go away :(! Also I have a really awful sore throat when it’s bad like this.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I’m pretty sure I’ve relapsed / got glandular fever again (if that’s possible). So trying not to despair (although I feel absolutely devastated lol) but wondering if anyone has found the same thing re brain fog ?

Cheers.

In my case I dont relate feelings in certain head areas to my brain fog but in the past I used to have worst brain fog when it felt like my whole head was stuffed with cotton wool (not pain but another feeling of my head being filled with something). I dont now usually get that feeling in my head but just have the brain fog.

and yes.. you may be getting another flare up for the EBV virus, the one which causes glandular fever. You could try to seek a dr who believes in reactivating viruses and get tests done and medications for this to see if it may help
 
Messages
91
In my case I dont relate feelings in certain head areas to my brain fog but in the past I used to have worst brain fog when it felt like my whole head was stuffed with cotton wool (not pain but another feeling of my head being filled with something). I dont now usually get that feeling in my head but just have the brain fog.

and yes.. you may be getting another flare up for the EBV virus, the one which causes glandular fever. You could try to seek a dr who believes in reactivating viruses and get tests done and medications for this to see if it may help
Thanks for this help :)

I am a little stuck re doctors as I live in a very remote location. And the doctors I have won’t test me for anything / give me any medication. They just say sorry it’s post viral fatigue / CFS and give me your money! So at a bit of a loss as to what to do... ! :(
 
Messages
91
I feel this too. I assumed it was a sinus infection, but it seems to be just another symptom of ME.

I’m sorry you have the same symptoms too :( ! I have been diagnosed with chronic sphenoid sinusitus (forgot to mention that above) not sure if it’s somehow all connected .
 

Runner5

Senior Member
Messages
323
Location
PNW
Do you have any other strange symptoms going on that might not fit with CFS?

I live in a super remote medical dead zone too and I get stuck with just whatever it has to offer (usually getting crowded in with highly contagious sick people for simple blood work etc.) So yeah I feel your pain.

Sounds like meningitis maybe the sphenoid sinusitis at work? ¯\_(ツ)_/¯

What are you doing for the sinusitis? I have rotten sinuses and it really hurts and I get migraines - sucks. I use anti-oxidants, CoQ10 and Vitamin C at the moment and kale/fruit smoothies (I think I live in the fungal capital of the world...). I still have sinus issues though so it's definitely not a silver bullet but they won't prescribe me antibiotics anymore so vitamins and clean living is about all I got. Are you on antibiotics now? That neck stiffness is a really bad sign, if you can get checked out by someone competent I definitely would, but I know that's not always easy especially when you don't feel well and at least for myself, transportation gets to be a big issue. At the moment I've run up such a huge bill that it will literally take my family years to pay of the latest tests.

Also take the advice here with a grain of salt, we don't know what supplements you take, how long you've been ill, age, geographic location, pharmaceutical prescriptions, or serious vices. However it's worth noting that I've seen a ton of doctors lately and no one took a complete history (maybe it's in a file somewhere?) No one asked me if I have any vices, I mean what if my symptoms were from an Oxy addiction, what if I drink a fifth of Jim Beam everynight before bed? What if for the past five years I never cooked a single meal and was a regular at McD's....I guess, you know if I was a doctor I would want to know stuff like that but no one ever asks me questions to figure out the full picture but then again they usually only have 5-10 minutes to talk to me tops. I coudln't diagnose and fix a computer with so little information but somehow they're going to manage my health. Eh' Not very confident in modern medicine but I try to stay positive. I know they're just doing a tough job.

But my throat hurts and if I hear "your tonsils are awesome, it can't be too bad" one more time....OMG (I had my tonsils removed when I was 16....)

Sending you some good mojo - I really hope you get to feeling better. That sounds like a scary set of symptoms and totally debilitating.
 
Messages
91
Do you have any other strange symptoms going on that might not fit with CFS?

I live in a super remote medical dead zone too and I get stuck with just whatever it has to offer (usually getting crowded in with highly contagious sick people for simple blood work etc.) So yeah I feel your pain.

Sounds like meningitis maybe the sphenoid sinusitis at work? ¯\_(ツ)_/¯

What are you doing for the sinusitis? I have rotten sinuses and it really hurts and I get migraines - sucks. I use anti-oxidants, CoQ10 and Vitamin C at the moment and kale/fruit smoothies (I think I live in the fungal capital of the world...). I still have sinus issues though so it's definitely not a silver bullet but they won't prescribe me antibiotics anymore so vitamins and clean living is about all I got. Are you on antibiotics now? That neck stiffness is a really bad sign, if you can get checked out by someone competent I definitely would, but I know that's not always easy especially when you don't feel well and at least for myself, transportation gets to be a big issue. At the moment I've run up such a huge bill that it will literally take my family years to pay of the latest tests.

Also take the advice here with a grain of salt, we don't know what supplements you take, how long you've been ill, age, geographic location, pharmaceutical prescriptions, or serious vices. However it's worth noting that I've seen a ton of doctors lately and no one took a complete history (maybe it's in a file somewhere?) No one asked me if I have any vices, I mean what if my symptoms were from an Oxy addiction, what if I drink a fifth of Jim Beam everynight before bed? What if for the past five years I never cooked a single meal and was a regular at McD's....I guess, you know if I was a doctor I would want to know stuff like that but no one ever asks me questions to figure out the full picture but then again they usually only have 5-10 minutes to talk to me tops. I coudln't diagnose and fix a computer with so little information but somehow they're going to manage my health. Eh' Not very confident in modern medicine but I try to stay positive. I know they're just doing a tough job.

But my throat hurts and if I hear "your tonsils are awesome, it can't be too bad" one more time....OMG (I had my tonsils removed when I was 16....)

Sending you some good mojo - I really hope you get to feeling better. That sounds like a scary set of symptoms and totally debilitating.
Thank you so much!!! :) I really appreciate your help !

I’ve had it twice like this ... once July 2015 when I first got sick I got this symptom as my main symptom and eventually it faded and then it hit me again two weeks ago (sore neck back of head feeling really pressurised foggy really really weird and my head feels like it’s hard to keep upright!! ). The thing is that it has hit me twice and both times when it hit I just don’t feel like myself I feel really really weird and distant / memory feels gone and I’m not a stupid person (I’m in the middle of Law exams!!!) would meningitis give me that kind of a symptom? I feel like brain fog is one thing (and very CFS ish... but feeling totally weird and high and distant is another?) and it’s definitely not psychological! I also suffer from migraines normally and am very light sensitive.

I have always wondered if I’d been misdiagnosed ... if I had suffered from meningitis both those times would it be viral? Presumably so? Prior to having this hit me initially in July ‘15 I’d had shingles. Not sure if that helps.

was inhaling menthol for the sinuses but I don’t really know where to start as the ENT gave me tonnes of antibiotics and they just made me feel worse!!!! Xx
 
Messages
91
Do you have any other strange symptoms going on that might not fit with CFS?

I live in a super remote medical dead zone too and I get stuck with just whatever it has to offer (usually getting crowded in with highly contagious sick people for simple blood work etc.) So yeah I feel your pain.

Sounds like meningitis maybe the sphenoid sinusitis at work? ¯\_(ツ)_/¯

What are you doing for the sinusitis? I have rotten sinuses and it really hurts and I get migraines - sucks. I use anti-oxidants, CoQ10 and Vitamin C at the moment and kale/fruit smoothies (I think I live in the fungal capital of the world...). I still have sinus issues though so it's definitely not a silver bullet but they won't prescribe me antibiotics anymore so vitamins and clean living is about all I got. Are you on antibiotics now? That neck stiffness is a really bad sign, if you can get checked out by someone competent I definitely would, but I know that's not always easy especially when you don't feel well and at least for myself, transportation gets to be a big issue. At the moment I've run up such a huge bill that it will literally take my family years to pay of the latest tests.

Also take the advice here with a grain of salt, we don't know what supplements you take, how long you've been ill, age, geographic location, pharmaceutical prescriptions, or serious vices. However it's worth noting that I've seen a ton of doctors lately and no one took a complete history (maybe it's in a file somewhere?) No one asked me if I have any vices, I mean what if my symptoms were from an Oxy addiction, what if I drink a fifth of Jim Beam everynight before bed? What if for the past five years I never cooked a single meal and was a regular at McD's....I guess, you know if I was a doctor I would want to know stuff like that but no one ever asks me questions to figure out the full picture but then again they usually only have 5-10 minutes to talk to me tops. I coudln't diagnose and fix a computer with so little information but somehow they're going to manage my health. Eh' Not very confident in modern medicine but I try to stay positive. I know they're just doing a tough job.

But my throat hurts and if I hear "your tonsils are awesome, it can't be too bad" one more time....OMG (I had my tonsils removed when I was 16....)

Sending you some good mojo - I really hope you get to feeling better. That sounds like a scary set of symptoms and totally debilitating.
And also I totally get what you mean re doctors!!!! I’ve experienced the exact same thing ..”. your throat is fine!!!” “You’re healthier than me (the doctor) “ when it’s lkke umm no I’m clearly not !!!
 

Runner5

Senior Member
Messages
323
Location
PNW
Do you take any amino-acid supplements?

So far on my health journey, I think the darn things can solve a rainy day. But I have no idea why. (Albeit I can't imagine them solving anything as serious as what you have - but since antibiotics have failed...maybe worth a shot?) Usually, when I have a problem that won't resolve, I haven't found the right amino or amino combo. It's pretty crazy. I can't explain why I just wouldn't have plenty of aminos on tap from the food I eat or why they would work within minutes of taking them. I've been looking for the science behind it for a long time but nothing satisfactory that rang true to me yet.

I would think I was the only person in the world even taking amino acids, I mean, no one should really have to take them at all theoretically but on the forum here at PR, loads of people take them and know all about them. I think there has to be some statistical significance to that. At the doctors office last I had to explain to the nurse what an amino acid was and how to spell 'Glutamine and Tyrosine' and I've been on some other health forums for my other medical stuff and they never mention amino acids.

I was wondering though what L-Tryptophan might do for you. That's kinda a shot in the dark but I guess it's lighting up some part of my brain. I used to have a photographic memory for science and anything I read and worked as a tech / taught college. Now I feel kinda feeble though but figure locked away is probably a lot of information. ;-P

If I owned a lab I think I would like to see what a spinal tap revealed, and do an Orthostatic Test and I've read on this forum about some kind of neck spinal issue that can cause an incredible number of very serious issues detected by an upright MRI. Really interesting stuff, maybe someone who knows more about that can chime in. But yeah, I really hope you get answers because that sounds not only super hard to live with but really scary.

Speaking of truly awful doctors -- I had Influenza B a couple of weeks ago -- and a really bad form bred up from the hospital where I caught it -- and the doctor I saw on call told me it was allergies! :p Haha -- To be fair though, earlier she had told a mother of a toddler with a high fever and a body-wide rash that the baby was fine it just needed to drink more water and it had....allergies! That doctor is going to kill someone. Gotta love Google reviews, I got to read all her 1 star ratings - which she only had 1 star ratings. ;-P The mother took the baby to a different hospital and was admitted, so she's okay thankfully. I can't believe someone would blow off a toddler with a rash and fever. I can see someone shucking off taking care of me, I'm not small and cute. ;-P But a toddler...seriously....

((hugs)) Hope you're feeling better today!