Brain Damage?
- Thread starter crypt0cu1t
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Brain Damage is hard to prove even with the best of testing. I think some people with CFS probably have brain damage but its a minority. However, what is very likely is neuroinflamation causing poor brain performance or imbalance.
The fact that some of us have had what seemed to be complete, if temporary, remissions shows that ME/CFS isn't permanent damage; it's just a temporary dysfunctional state. Furthermore, it can switch states in a matter of minutes or hours, so it doesn't involve major cellular changes or deficiencies or excesses. It may be just a change of ratio between a couple of proteins, which in turn alter other things. Switch the ratio back to normal (somehow), and everything goes back to normal.
@crypt0cu1t Sounds like low blood to the brain. You should find a dysautonomia specialist. They are often cardiolgists or neurologists. https://www.dinet.org/ has a list. That should be good for a start. There are also some major hospital centers which are probably even better.
I went to a local cardiologist that runs a dysautonomia center. I don't have all those symptoms. He said I had neurally mediated hypotension, but not POTS. I also had purple hands and feet when I was there.
Sometimes when I get up from activity on my back I will lose my hearing for a minute.
I went to a local cardiologist that runs a dysautonomia center. I don't have all those symptoms. He said I had neurally mediated hypotension, but not POTS. I also had purple hands and feet when I was there.
Sometimes when I get up from activity on my back I will lose my hearing for a minute.
sunshine44
The only way out, is through.
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yes!! so much so 
I am so sorry others are suffering but all the things you describe I just can't do easily and my family is like just sit in a wheelchair (from POTS/lyme) at table for Thanksgiving but I get sooooo overwhelmed with conversation, noise, etc. so easy. I am feeling so upset by it all today and numb. This has been happening hardcore with my brain for nearly 2 years now.
I am so sorry others are suffering but all the things you describe I just can't do easily and my family is like just sit in a wheelchair (from POTS/lyme) at table for Thanksgiving but I get sooooo overwhelmed with conversation, noise, etc. so easy. I am feeling so upset by it all today and numb. This has been happening hardcore with my brain for nearly 2 years now.
I'm not quite sure where to post this but, I have decided to put it here as I have posted on Hypopituitarism/PTHP on this thread in the past. Joanna Lane (MailOnline/May 2014) wrote "Thousands of British patients suffering from chronic pain and fatigue could be misdiagnosed with psychological problems when they unknowingly have a type of brain damage.The major cause of the damage is head injury, which can be relatively mild. However, viruses and tumours can even be a trigger."
The symptoms of PTHP – which also include fatigue,depression, obesity, high blood pressure, loss of libido and even infertility – could take years to emerge. That article in 2014,mentioned how up to 30,000 patients were being misdiagnosed with ME/CFS when in fact they had brain injuries(hypopituitarism/PTHP).As in case of long-covid ,these illnesses can overlap and so much more research work is required.
In my own case I have had contact (over a period of time)with an organophosphate(malathion),an assault years ago,enterovirus infection/parasites too and benzodiazepine addiction/withdrawal(horrendous!)....Back in 2014 after a lot of " sabur"(patience)and perseverance, I finally had a diagnosis for Hypopituitarism/PTHP. Fortunately ,this may have given me a few extra years of life but, my crippling illness still continues.
Joanna Lane/family have now set up a Trust in memory of their loving son Christopher who sadly died due to suicide at age of 31yrs.It is believed that he probably had Hypopituitarism that wasn't picked up/treated. This family are now helping others to get a proper diagnosis/treatment if they have had head injuries(even minor ones can cause problems!)Here is the link to their site
www.christopherlanetrust.org.uk
Personal stories re Hypopituiarism/PTHP are available there too.
www.christopherlanetrust.org.uk
The symptoms of PTHP – which also include fatigue,depression, obesity, high blood pressure, loss of libido and even infertility – could take years to emerge. That article in 2014,mentioned how up to 30,000 patients were being misdiagnosed with ME/CFS when in fact they had brain injuries(hypopituitarism/PTHP).As in case of long-covid ,these illnesses can overlap and so much more research work is required.
In my own case I have had contact (over a period of time)with an organophosphate(malathion),an assault years ago,enterovirus infection/parasites too and benzodiazepine addiction/withdrawal(horrendous!)....Back in 2014 after a lot of " sabur"(patience)and perseverance, I finally had a diagnosis for Hypopituitarism/PTHP. Fortunately ,this may have given me a few extra years of life but, my crippling illness still continues.
Joanna Lane/family have now set up a Trust in memory of their loving son Christopher who sadly died due to suicide at age of 31yrs.It is believed that he probably had Hypopituitarism that wasn't picked up/treated. This family are now helping others to get a proper diagnosis/treatment if they have had head injuries(even minor ones can cause problems!)Here is the link to their site
www.christopherlanetrust.org.uk
Personal stories re Hypopituiarism/PTHP are available there too.
www.christopherlanetrust.org.uk
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