• 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, 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.

Brain Sensitivity / Headache without the pain

Whit

Senior Member
Messages
399
Location
Bay Area
I’m experiencing a new symptom and I’m curious if anyone else experiences this and if you’ve found anything that helps.

The best way I can describe it is a headache/migraine but without the actual pain. You know the feeling when you have a headache and loud music is playing? Like your brain is just really sensitive and can’t tolerate the stimulus and it is physically very uncomfortable? Not in terms of PEM but in terms of an immediate uncomfortable sensation in the brain. It feels like that all the time even without music. It feels as if the brain isn’t protected like normal and is exposed to the world. I have called it dizziness or lightheadedness because it sort of feels like that, but I’m not actually dizzy or lightheaded. It comes and goes in severity but is pretty destructive to my ability to think/process/perform mental tasks when it is severe.

The headache med Nurtec / CGRP receptor antagonists don’t help but maybe a different class of headache meds would?

Anyone else experience this? 🙏

Thank you! Love, Whitney 💙
 
Last edited:

hapl808

Senior Member
Messages
2,180
Yes, all the time. For me it comes when I try to do any cognitive processing, and usually precedes the full PEM crash which comes later.

For instance, working on a computer problem will start off as fun. If I can get in a flow state, within 10-20 minutes I will start getting acid reflux and my brain will start to feel overwhelmed in a hard to describe way. Like I'm racing to finish the problem before my skull fills with poison. If I push through, I get a migraine. If I stop, then I usually feel better…but the migraine and crash often comes the next day or two.

I'm usually able to do short phone calls - but if I push past my limit, the same brain poison starts. Loud noise does it to me as well.

May be all the same, may be different sides of the same coin.

Dunno if that's incoherent. Had a phone call last night and already paying for it today with the beginnings of a pressure headache.

Tried: curcumin, LDN, ibuprofen (somewhat helpful), glycine, NAC, magnesium, agmatine, luteolin, fish oil, lemon balm, theanine, melatonin, allicin, hawthorn, beta blockers, guanfacine, etc.

My guess is some leaky BBB and neurotransmitter issue or glutamate sensitivity or glial activation. No idea, just wish I found something that helped because it's the main thing that stops me from talking on the phone, working on the computer, etc.

A boring 10 min phone call - usually okay. An enjoyable and engaging 10 min phone call - awful crash.
 

Rufous McKinney

Senior Member
Messages
13,465
I was just acutely sick with gastroperesis and horrible nausea. This happens to me recurrently and I don't know whats triggering it. It had been 2 years since it happened this time.

anyway, just the throwing up really concerns me because I think each bout contributes to CCI-like breakdown in the neck, and all these neurological problems seem to intensify.

I often feel like a huge "bubble" is in my brain, and I even try to shake it out of there.
 

hapl808

Senior Member
Messages
2,180
My guess is some leaky BBB and neurotransmitter issue or glutamate sensitivity or glial activation. No idea, just wish I found something that helped because it's the main thing that stops me from talking on the phone, working on the computer, etc.

To be specifically vague, my theory is that some neurotransmitter type thing (glutamate, dopamine) is released naturally for cognitive effort or pleasure or whatever. Instead of staying where it's supposed to be, it is crossing the BBB (or something else is crossing and interfering), thus leading to all these downstream effects.

How do we treat that, though? My thought was that LDA may be acting on dopamine receptors and alleviating it, but I really don't know. Seems like the barrier needs to be repaired but not sure if that's possible.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,129
Location
australia (brisbane)
Yup that sounds very familiar. Worsens into an actual headache if I push to keep doing cognitive things but my brain stops working anyway so pushing through it just becomes useless floundering.
Yes. I actually think brain fog is a low level of pain or maybe pre-pain🤔. Some days it can just stay foggy but other days it progresses into a headache or a full blown migraine .
 

Strawberry

Senior Member
Messages
2,114
Location
Seattle, WA USA
Hi Whitney. I second silent migraine. I don’t know what to do about it though, I just wait it out and it usually goes away.

My best friend uses Nurtec and some others, I’ll see if I can get here to post here, or at least get advice that I can pass on.
 

Violeta

Senior Member
Messages
3,009
If the symptom is caused by swelling:

What is the alternative to steroids for brain swelling?


Answer from: Radiation Oncologist at Community Practice

An old treatment that works is Magnesium sulphate. It can significantly reduce edema in the brain as quickly as steroids.

Has anyone tried steroids for it?
 

hapl808

Senior Member
Messages
2,180
Has anyone tried steroids for it?

Steroids come up a lot (including in this forum on the PEM sticky), but I haven't tried them. I also wonder about the long term damage, as my very initial onset was probably when I got what was likely mono and then got rx'ed prednisone. My symptoms were extremely mild after that until a vaccine and an international trip, so who knows.

I wish I could figure out something to improve the brain fog PEM crash poisoned neuroinflammation feeling. I think I Google it every single day, thinking I'll find something different. Asking AI about obscure approaches or how Agmatine might affect neuroinflammation or what adrenergic medications might impact it or whatever. Can't say I've made any progress though.
 

Judee

Psalm 46:1-3
Messages
4,538
Location
Great Lakes
An old treatment that works is Magnesium sulphate. It can significantly reduce edema in the brain as quickly as steroids.
Did he mention how to take it? I couldn't even be around the smell of Magnesium Sulphate before I did several years of antibiotics for possible Lyme Co-infections. Now I can even do epsom salt soaks. :)
 

Violeta

Senior Member
Messages
3,009
Steroids come up a lot (including in this forum on the PEM sticky), but I haven't tried them. I also wonder about the long term damage, as my very initial onset was probably when I got what was likely mono and then got rx'ed prednisone. My symptoms were extremely mild after that until a vaccine and an international trip, so who knows.

I wish I could figure out something to improve the brain fog PEM crash poisoned neuroinflammation feeling. I think I Google it every single day, thinking I'll find something different. Asking AI about obscure approaches or how Agmatine might affect neuroinflammation or what adrenergic medications might impact it or whatever. Can't say I've made any progress though.
Yeah, steroids can be counterproductive. I don't know how they reduce swelling, do you?
 

Violeta

Senior Member
Messages
3,009
Did he mention how to take it? I couldn't even be around the smell of Magnesium Sulphate before I did several years of antibiotics for possible Lyme Co-infections. Now I can even do epsom salt soaks. :)
I just found that info in google. Usually it's from a study, but I didn't take the time to look any further. I don't know how it is supposed to be taken to reduce swelling in the brain, maybe just soaking in it. If I have the energy today I will look into it further.
 

Violeta

Senior Member
Messages
3,009
I see ammonia can cause the uncomfortable symptoms in the brain.



Elevated concentrations of ammonia in the brain as a result of hyperammonemia leads to cerebral dysfunction involving a spectrum of neuropsychiatric and neurological symptoms (impaired memory, shortened attention span, sleep-wake inversions, brain edema, intracranial hypertension, seizures, ataxia and coma).
 

Dysfunkion

Senior Member
Messages
189
To be specifically vague, my theory is that some neurotransmitter type thing (glutamate, dopamine) is released naturally for cognitive effort or pleasure or whatever. Instead of staying where it's supposed to be, it is crossing the BBB (or something else is crossing and interfering), thus leading to all these downstream effects.

How do we treat that, though? My thought was that LDA may be acting on dopamine receptors and alleviating it, but I really don't know. Seems like the barrier needs to be repaired but not sure if that's possible.

You actually may be right there since with me that would definitely line up with my overall issues. It feels like my brain is just raw and doesn't have any protection so nerve signals, neurotransmitters, hormones, and other bodily chemicals just go all over the place where they shouldn't and cause chaos. I haven't heard of anything actually repairing the BBB, actually kind of shocked no one has found a way to do so yet.
 
Back