Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
The humming: Yes, I do it constantly, and until now I never connected it to my CFS. Alistair: what's the connection?
I also don't like people talking to me when I've got the sensory overload going on or when i hit that crash point.
Can't say i hum though, I usually don't like any noise at all when i feel like that.....interesting :)
I wasn't aware that I was humming...my daughter was the first one to point it out...I didn't even hear it. I guess I am a statue with a frig motor...don't understand it. She said, "Mom, you always do that when you're done, out of energy. "Huh?" so weird......hugs!
When I was in bed for the first year I had 5 minutes talking time with my wife before through cognative processing I would have developed so much processing toxins that I induced a migraine.
Over the next year it gradually improved to where I had @ 25 minutes cunulative talk time per day.
In these years I did not watch TV News or listen to the Radio News. It was too hard. Too much processing. I hardly watched any TV at all.
I hardly listened to any Radio, no talkback, no current affairs, no international news, no sport (too emotional, to quick), just the occasional jazz musician story /documentory a wildlife program with the sound turned down or a carefully concidered movie on a DVD.
Like horseluvnhoosier sais "It's just too much effort to think let alone talk."
Hand signals are easier especially when I have a toxin induced migraine while I can still see.
Yes Jeb, yep I get the 'humming' too. Its nothing like tinnitus. I have had tinitus for 20 years so I know what tinnitus in like and I know what tinnitus is not like.
The humming is like an electrical power pole transformer humming in the rain. If anyone has done any arc welding then its like an arc welder beside each ear but you gear it in the center of your head.
Like Jeb sais "Doesn't happen often but it's scary when it does " to be truthful it silently scares the $#!+$ out of me. Its a noise that instinctively sais this is not good.
I've asked CFS litterate Doctors, CFS Research Specialists and Professors who research CFS and none of them have told me what they think it is, but like Jeb sais its always when I am Neurally more vulnerable, when my body's fatigued, acute flue or physically/mentaly stresses or have over done the mental stimulation.
These days its like a mixture of how Richie' and Jeb' describe it.
Its either my brain just slows down to the point that I can't articulate my thoughts...because I don't have any or in high stimulation phases where there is the avenue for emotion its like 'stunned silence when the neuro symptoms hit',
I cant make the words come out, just stuttering and stammering. My wife normally que's thatI'm stressed and navigates away from stressful topics of conversation.
Like butterfly baby sais "When my fatigue is overwhelming I get very quiet. It' like I dont even have the energy to talk. It's horrible!!"
I hate it but I try not to loose valuable energy hating it. I dislike it immensly because it dislocates me from participating in life and I often end up in bed in order to recoupe capacity.
I'm sure its the processing elements of the central cortex or the Limbic System in toxic overload, gridlock head is what I always used to call it.
When I used to get close to it I used to say to my wife "gridlock head" and she would know what that ment.
Will do more research on it but Jeb's thaughts of "lack of oxygen in my brain somewhere" due overwhelming surge of neurotoxins due stimili make perfect sense to me. ie not enough oxygen to bust out overwhelming 'free radical, oxidative stress' generation and accumulation.
The Journal Neuroscience and Medicine Volume 02, Number 01(Mar. 2011) had a really good article in it on 17th March.
"An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
Leonard A. Jason, Matthew Sorenson, Nicole Porter, Natalie Belkairous
Abstract | References Full Paper: PDF (Size:202KB), PP.14-27, Pub. Date: 2011-03-17
DOI: 10.4236/nm.2011.21003
You can acess it from
http://www.scirp.org/journal/nm/
and clicking on the Full Paper; PDF link.
It talks about kindling. Using kindling in a similar context as 'kindling' for a fire.
Kindling involves after-discharge of neuronal cell
populations that continue to fire after the initiating stimulation
has ceased.
The stimulus is followed by a growing EEG 3Hz spiking, which increases and decreases in amplitude many times, something that does not occur in a brain functioning normally. This seizure activity often spreads to adjacent structures in the brain.
Once this system is charged, it can sustain a high level of arousal with little or no external stimulus. Excessive arousal can lead to an increase in the dendrites of the limbic system, with an increase in excitatory postsynaptic re- ceptors and a decrease in inhibitory presynaptic receptors.
Broderick et al. (2010) applied network analysis to cytokines
in patients with ME/CFS and healthy controls, and outcomes
were consistent with a latent viral infection (i.e., attenuated Th1 and Th17 immune responses, an established Th2 inflammatory milieu, diminished NK cell responsiveness).
Viruses increase activation of macrophages,a primary immune response, which produce a release of interleukin-1beta (IL-1), a pro-inflammatory cytokine, causing an alteration in the electrical activity of
the brain.
Chronically repeated low-intensity stimulation due to an infectious illness might cause kindling of the limbic-hypothalamic-pituitary axis among patients with ME/CFS. Kindling might also occur by high intensity stimulation (e.g., brain trauma) of the limbic-hypothalamic-pituitary axis.
End quote of artice
De Meirlier has already done my Th1, Th2 and Th17 blood tests and illustrated them in a 'seasaw'.
Th1 should balance Th2 and if they are balanced Th17 is balanced. In a CFSer either Th1 or Th2 are way out of balance amplifing Th17.
So this kindling theory sits well with me because toxic load in your organs or spinal fluid can pre drive your immune response and induce chronically repeated low-intensity stimulation due to an infectious illness might cause kindling of the limbic-hypothalamic-pituitary axis that is only ever amplified when extra stimulus is added.
Extra stimilus like talking, or music or sunlight or noise or disagreement (when the emotional brain is more sceceptable to being overwhelmed) or for that matter fun, or laughter or deprivation of restorative rest/sleep or when we have an short term flue/cough/cold/sinus infection. I know at times like these I am more likley to be overwhelmed into silance.
Being overwhelmed into silance and not even being able to talk is like a survival mechanism, but it doesn't mean I like it.
Great question Serce
Thank you
Al
I can totally relate. In a way I think the humming would be good. That way people would know when you were like this. I'm sure my kids thought I was mad or didn't want to be near them.
Later I get scared I suppose, but when I am in it I haven't any emotional capacity. I am just disabled. No power source. Can't reboot for awhile......hugs to all! Just a quiet nonsensical hum...
Being overwhelmed into silance and not even being able to talk is like a survival mechanism, but it doesn't mean I like it."
Totally agree, this is when i get the shut down as I call it and go silent, when I'm sensory overloaded (particularly emotionally or by noise or motion/activitity/chaos for me), or when I feel very ill I won't talk much. When I'm CRASHING.
But yeh, is this a compensatory mechanism to settle our brains then to prevent a crash/relapse/or seizure? I guess that's what I'm wondering too.
Also I've had tinnitus and hyperaccusis badly with this illness too (heaps better now on Topomax) so I get what you're describing as being very different re the inner humming noise (which I haven't experienced). Other people talk about "brain zaps". I haven't had them, but do you think they are what you are describing, or something different again?? I know alot of people get brain zaps with cymbalta but i'm meaning relating to ME/CFS, I've seen a few people post comments about it happening.Just curious if it's the same phenomena, just trying to understand the broad spectrum of symptoms with this illness. Thanks for sharing guys.
Finally one last thing, if my memory serves me correctly, and it would be a miracle if it did :), I remember reading the Canadian consensus guidelines description of a "crash" (I'm sure it was a crash not sensory overload...?) as they said how the person becomes "immobilised'.
My Dad asked me something when I was crashing recently and I gave him the easiest answer requiring the least amount of words "no" (wrong answer by the way). Later he said why didn't you tell me you needed me to help you with x, y, and z, and I thought about this for awhile, because I was "immobilised", I couldn't answer you properly, nor could I move from the couch to get to the bed.
During the 12 + years I've had CFS, I thought I had come to recognize all of my symptoms/reactions/coping mechanisms; the verbal shut-down and humming are things I believed only I did. I thought they were just a quirkiness I've developed. Now I know better.
I'm very intrigued with the idea that the humming is compensatory, somehow, or a by-product of the brain attempting to derail a crash. Makes sense.
Al: Your analogy of this phenomenon being "like an electrical power pole transformer humming in the rain," was powerful, poetic even.
For a group of people dealing with a multi-system debilitating chronic illness, we sure have a bunch of smart, articulate people on this board. I'm grateful.
Jeb
I've learned so much, Like you shared, " I thought so many symptoms were just a part of my own quirkiness."
Wish I'd had this amazingly cool tool school way back when, so grateful for it NOW!!!!