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Brain inflammation

Messages
72
Location
Berkshire UK
I seem to have weeks going into months of brain inflammation which is horrendous. My brain feels inflamed which at night particularly seems to go throughout my body, some of the day as well. The feeling is deeply uncomfortable and quite excruciatingly painful with some throbbing, spreads across the whole head with nothing that seems to help apart from ice packs. Sometimes I lightly touch parts of my head and face and get mild mild relief from that touch. My brain seems to hurt and often it transmits through my whole body.

At night my body seems to become inflamed and swollen and I can’t clench my fist.

Often I get nausea associated with this and sometimes I feel my lungs start to close up.

Help
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Hi-

I use to get flu-like flares fairly regularly, that would put me in bed and I'm fairly high functioning with ME/CFS. When I started high dose epa/dha from fish oil, the flu-like fares have all put disappeared!

It took 4 grams a day of Epa and Dha, from 8 grams of fish oil, to stop the flares.

I have only had 2 flares that each lasted about 24 hours, in almost a year! The reason I connect this to your post, is that these flares are caused by the sickness response in the brain, from brain inflammation.

ME/CFS researcher Jarred younger believes that it's this brain inflammation that causes the symptoms seen in ME/CFS. He also thinks it could be immune activation in the body, causing the brain inflammation and I agree.

The immune activation in the body could cause both inflammation in the body and in the brain.
 
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Rufous McKinney

Senior Member
Messages
13,251
It took 4 grams a day of Epa and Dha, from 8 grams of fish oil, to stop the flares.

Gotta get me some Fish Oil Mayonaise.

Translated: I am still not on Omega 3s. This is: probably due to my aversion to being involved in anything fish related...ocean related....

I've gotta: address this one soon,. I even bought Flax Oil (the HIP anxiety cure) and then didn't drink it...my husband drank it all.

Failure to deploy is a thing.
 

southwestforests

Senior Member
Messages
575
Location
Missouri
Attention all hands! Sound the "Off on a tangent" alert:
Failure to deploy is a thing.
I didn't make it to our weekly creative writers group meeting this morning, so, my brain is perhaps making up for that by taking this phrase, your profile picture of a dragon, and pondering what story/stories might come from combining those.
 

Zebra

Senior Member
Messages
853
Location
Northern California
Hi, @Sallyagerharris,

I am very concerned for you.

I am not familiar with your medical history or disease progression, but I am wondering if you have ever had a spinal tap?

My thinking is that it would confirm inflammation of the brain and/or spinal cord, which could direct prompt treatment/symptom relief.

I was diagnosed with encephalitis and myelitis SIX months after onset, and I firmly believe that if I had been more vocal about my symptoms, or perhaps articulated them as well as you have, I would not be as severely disabled as I am now.

Please keep us posted as you are able.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
At night my body seems to become inflamed and swollen and I can’t clench my fist.

My worst headaches are when I am also experiencing water weight. It makes my neck vertebra area swell and causes much of what you mention--feeling like my brain is swelling, whole head and neck hurt, body stiff and unpliable. Your not being able to clench a fist makes me think you could also be having that since I get the same thing where it becomes difficult to close my fingers.

I agree with @Zebra that you should be careful to get medical help if it doesn't abate though.

Translated: I am still not on Omega 3s. This is: probably due to my aversion to being involved in anything fish related...ocean related....

@Rufous McKinney, I think Walnut oil is also very high in Omega's 3s if you can tolerate them.
 

Rufous McKinney

Senior Member
Messages
13,251
I didn't make it to our weekly creative writers group meeting this morning, so, my brain is perhaps making up for that by taking this phrase, your profile picture of a dragon, and pondering what story/stories might come from combining those.

How: co-incidental!

I got VERY hung up on the term Deployment..for quite some time now. It seemed to be describing almost everything...that wasn't happening for a period of time. I like used the term so much I wore it out around here.

and that firedrake..is SUPPOSED TO BE THERE FOR DEPLOYMENT....(for getting rid of that which I don't need any longer...symbolically speaking). And one can ride the Firedrake, during deployments. And that is FUN.
 

southwestforests

Senior Member
Messages
575
Location
Missouri
And one can ride the Firedrake, during deployments. And that is FUN.
And that does sound fun!
Can remember imagining riding the dragons while reading Anne McCaffrey's Pern series.
And then ...
My brain ...
takes "failure to deploy" and ...
inserts a twist, then imagines a scene ...
...
"Hey, William, have you figured out what is wrong with the court jester?"
"Yes, it seems a case of failure to derp, Lloyd."
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I agree with Zebra about getting some proper medical tests for brain inflammation. We can't just assume that because we have ME, we can't develop any other medical problems. You might have a viral or bacterial brain infection which can be treated, and can be very serious if not treated promptly.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I think Walnut oil is also very high in Omega's 3s if you can tolerate them.

The problem there is that the ALA in that oil isn't converted very well (only 1 - 10%) into EPA and DHA, so you don't get the same (claimed) benefits of fish oils. Algae oil is supposed to be a bit better than plant oils.

Of course it all comes down to: you have to try whatever it is yourself and see if it works for you.
 

andyguitar

Moderator
Messages
6,595
Location
South east England
There are'nt any pain receptors in the brain @Sallyagerharris so what you are experiencing is not pain in the brain. However there are pain receptors in the Meninges which surround the brain. If you have'nt consullted a Doc yet I suggest you do. Good luck.
 

edawg81

Senior Member
Messages
142
Location
Upstate, NY
I get this exact symptom all the time, coupled with the feeling of feverishness. Only thing that helps are cold/ice packs and time for it to pass. Sometimes advil helps if i also have a migraine.
 
Messages
72
Location
Berkshire UK
Thank you for the advice and replies. My doctor just asked me to try nortriptyline but nothing is softening or alleviating the brain stuff ... need energy to get back to doctor to tackle it and get help ... if there is any ... trying fish oil supplements ... feeling so horribly scary unwell with this
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
The problem there is that the ALA in that oil isn't converted very well (only 1 - 10%) into EPA and DHA, so you don't get the same (claimed) benefits of fish oils. Algae oil is supposed to be a bit better than plant oils.

I know you are getting some help with sleep using Evening Primrose. Do you think that's because it is helping brain inflammation? Also do you think that Borage oil would work the same? I don't have Evening Primrose available right now.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I know you are getting some help with sleep using Evening Primrose.

I stopped using it because something in my diet was making me feel worse. It turned out to be proline, but I haven't gone back on EPO yet. I'm not even sure whether EPO was still helping my sleep. Maybe the EPO made me sensitive to proline?

I don't know why EPO seemed to help my sleep, so I don't know whether borage oil would do the same, and I don't know whether EPO would work for anyone other than me. ME is tricky that way. The only way to find out whether something works for you is to try it ... and report back here! :)

The EPO could have worked through lipid membrane production, or some other mechanism.