Hi just wondering if anyone else has these issues too? And if anything in particular has helped? My condition diagnosed as CFS started suddenly with palpitations and anxiety and generally feeling awful 20yrs ago now. It was like a switch was flipped and have been broken since! I think POTS was the likely explanation for initial onset. And I think there is overlap with POTS / CFS. Several years in cognitive issues crept in affecting word finding decision making and generally robbing me of my personality. I eventually got onto SSRIs which did give some relief and chopped and changed when effects wore off however now nothing seems to help. I'm interested in the autoimmune theories, autoantibodies and immunotherapy as I can't fathom another cause for it all. Many thanks
Frontal head pressure with cognitive and personality changes
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Yip it's odd that one can 'feel' what feels like brain inflammation and that the symptoms of depression / anxiety go with it. I haven't heard of people with depression / anxiety that's not related to CFS complaining of pressure like sensation...
Good no cognitive issues. I can't think of anything worse. Literally can't think. 🙄🤪
I can relate very much to the head pressure and cognitive problems you speak of, sorry to hear you've been suffering from this for over 20 years with no further progress getting to the bottom of it. Even after all this time, I do hope you manage to find some answers and get relief from this.
My case of it started suddenly with a flu-like illness 5 years ago and I only had severe brain fog and general tiredness/lethargy as symptoms originally before things kept getting worse and others developed. I've also recently been looking into autoimmune causes as a possibility as a can't figure out any other explanation.
My case of it started suddenly with a flu-like illness 5 years ago and I only had severe brain fog and general tiredness/lethargy as symptoms originally before things kept getting worse and others developed. I've also recently been looking into autoimmune causes as a possibility as a can't figure out any other explanation.
Hi Sean yeah it's a bummer alright. I have had periods of relief but never a full escape from it! But I continue to look for answers and when I get them I'll pass them on!
Yes it's not uncommon for it to be post viral and it seems reasonable to assume that this kicks off an autoimmune response which attacks self and that self has something to do with neurotransmission be it receptors or something or other! Frustrating though that we're having to try and work it out ourselves! Hoping the fog clears for you too!
Yes it's not uncommon for it to be post viral and it seems reasonable to assume that this kicks off an autoimmune response which attacks self and that self has something to do with neurotransmission be it receptors or something or other! Frustrating though that we're having to try and work it out ourselves! Hoping the fog clears for you too!
Yep, I'd say that the autoimmune theories would make sense, especially when the onset is sudden (like a switch being flipped like you said) and just keep getting worse with nothing moving the needle (other than the antidepressants you mentioned).
I'll be seeing a doctor soon who specialises in ME/CFS and post-viral related conditions. The same doctor who apparently first recorded ME as a cause of death in the UK. Although I don't appear to have actual CFS or ME, hopefully I might manage to get some answers here and investigations done that could validate my symtoms somewhat. If there's any progress with this, I'll also keep you posted. Best of luck!
I'll be seeing a doctor soon who specialises in ME/CFS and post-viral related conditions. The same doctor who apparently first recorded ME as a cause of death in the UK. Although I don't appear to have actual CFS or ME, hopefully I might manage to get some answers here and investigations done that could validate my symtoms somewhat. If there's any progress with this, I'll also keep you posted. Best of luck!
Yes frontal lobe damage and loss of personality here too.its the control centre of our emotions and behaviours
And home to our personality.but also for movement.we have ppl in our neurotoxicity group who for example one side of the body is paralysed.
Damage to the frontal lobe can be caused by viruses and infections,neurodegenerative diseases and brain injury ,physical or for examples from drugs or chemicals.
So what would help is getting your virus load and inflammation down,and doing everything to activate your parasymphatetic nervous system,because we are all the time with ME in a symphatetic overdrive and stress hormones disrup neurons in the frontal lobe most
And home to our personality.but also for movement.we have ppl in our neurotoxicity group who for example one side of the body is paralysed.
Damage to the frontal lobe can be caused by viruses and infections,neurodegenerative diseases and brain injury ,physical or for examples from drugs or chemicals.
So what would help is getting your virus load and inflammation down,and doing everything to activate your parasymphatetic nervous system,because we are all the time with ME in a symphatetic overdrive and stress hormones disrup neurons in the frontal lobe most
Are you based in the UK? Interesting you seeing that doc. Who are they? I'm in the UK. It's difficult for UK docs to do anything off piste which isn't always a bad thing unless you need something experimental as nothing standard works!
Yeah, I'm from Glasgow. The doctor I'll be seeing is Dr Abhijit Chaudhuri. He's an NHS neurologist at London Queen's hospital but he travels to Glasgow to see private patients, at £220 for an initial appointment.
UK doctors, NHS especially, generally do nothing for anything not written in the book. But do believe that if I see this neurologist privately, I could at least get some investigations done that may show some findings pointing towards a problem, given that he at least aknowledges conditions like ME/CFS as organic diseases rather than just unexplained or functional problems. Just now, all we have to go on is guesswork with symptoms and theories about inflammation and autoimmunity, while we continue deteriorating with ill health and cognitive decline that may never improve, especially in my case anyway. There are cases where brain fog needs medical attention and ours are good examples I would say. I just hope we all manage to find answers one day.
UK doctors, NHS especially, generally do nothing for anything not written in the book. But do believe that if I see this neurologist privately, I could at least get some investigations done that may show some findings pointing towards a problem, given that he at least aknowledges conditions like ME/CFS as organic diseases rather than just unexplained or functional problems. Just now, all we have to go on is guesswork with symptoms and theories about inflammation and autoimmunity, while we continue deteriorating with ill health and cognitive decline that may never improve, especially in my case anyway. There are cases where brain fog needs medical attention and ours are good examples I would say. I just hope we all manage to find answers one day.
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hmm I know that name, they um saw me, treated would be a strong word for that interaction. May I suggest perhaps someone, anyone else.
I see, sorry to hear about your bad experience, and thanks for letting us know. I have heard some mixed feedback with patients regarding the doctor I mentioned, though I did think the bad ones were related to the NHS, just offering CBT and such. Thanks.
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