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New paper: Progressive brain changes in CFS

Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
I lost my creative ability during the acute phase. All of it.

I've been writing stories since I could hold a pen: little black-and-white notebooks filled with fiction from five-year-old me. It was like a door to my core self slammed shut and I couldn't get in anymore.

Coming back, now. Thank heavens for neuroplasticity. But still more logically-oriented than I used to be, less prone to leaps of creativity. It's the creepiest.

Just adding a big "me too" to this one. Been writing since I was 8. Creating at plot was like breathing. And then about 7-8 years into this Damn Disease it just stopped. I could think of plot scenarios but it would never go further than that. I have notebooks full of story ideas that have remained just ideas.

And then, all of a sudden last fall (year 17 of DD) I thought of a silly story I had thought up in high school and boom, suddenly I could write again. Thank heaven for neuroplasticity indeed!

And like you I've gone from an INFP on the Meyers-Briggs to an INTJ. I've gone from being that person who was always intimidated by those uber-logical types to being the intimidating one (or so people around me say). Though, it does make interactions with clinicians a lot easier... :cool: (That's right, be intimidated bitches! -- just kidding!)

I have these flat emotions (aka: blunted or flat affect), and I find I don't respond or enjoy all the music I once loved, I suspect because a lot of music involves arousing the emotions, but if your emotions do not respond, the music seems flat and pointless.

Also, I find the ME/CFS sound sensitivity (hyperacusis) definitely does not help either, especially for the rock music that I used to like. A Jimi Hendrix guitar solo doesn't go well with ME/CFS sound sensitivity!

I always loved Radiohead but absolutely cannot listen to them at all now thanks to hyperacusis. Even the Beatles or a symphony can be hard. I'm mostly just stuck with piano music. And when I'm really bad off, I crave Enya. I...I don't really know what to do with that...:oops:
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
And like you I've gone from an INFP on the Meyers-Briggs to an INTJ. I've gone from being that person who was always intimidated by those uber-logical types to being the intimidating one (or so people around me say). Though, it does make interactions with clinicians a lot easier... :cool: (That's right, be intimidated bitches! -- just kidding!)

Ha! :D

I always had a logical side, but it's definitely come to the fore, now. And yes, people find logic really creepily intimidating as a rule.

I just watched a movie in which they burned the great library of Avicenna and called the main character a 'necromancer' and sentenced him to death because he did an autopsy. To be clear, no character thought he was raising the dead or anything, they just found the pursuit of that level of knowledge ungodly.

Okay, this is a real tangent, but that deep-seated fear of intellect is still in play in our society and still incredibly creepy.

Re: sound -- actually, I've always had hyperacusis. (This is an old thread; maybe I already said this.) My students found it uncanny that I could hear them whisper from any corner of the room. As a young kid I used to literally cry at the volume of music my older sisters listened to in the car and in their rooms: I found it intolerable. As the youngest of three, you can imagine that they thought I found it 'mildly unpleasant' and was exaggerating my reaction, so I would try to hide how much it upset me. In fact, the really loud noises made me literally nauseated, I found them so unpleasant. Has anyone else experienced this?

My niece and nephew have a particular intolerance for certain types of sound, which I also identify with: repetitive quiet noises really bother me because it's like they never 'fade into the background' as other people say. "I just stop noticing it." My senses never 'turn off' in this manner. It's the same for smells: "you get used to it." No, I really don't. I think without this ability to 'turn off' a sound, the constant and repetitive pull of your attention away from your train of thought is very irritating.

As I've gotten older, I've gotten better at directing my attention forcibly away from certain noises / sounds, and it bothers me less, but I think this is a matter of discipline and control that comes with age rather than that this symptom is actually 'better'. Often I'll be sitting at a restaurant and go, "oh, I love this song!" and everyone will look at me blankly. The background music has long since become 'background' for them. Their brows furrow and their heads tilt as they try to bring it back to the foreground of their brains, and ten seconds or so pass by in silence. Then, "...oh, this song!" or even "which song is it? I can't tell."

It's a superpower on the one hand, and really irritating on the other hand.

It also makes me wonder if PWME have anything genetically in common with PW Autistic Spectrum Disorders.

-J
 

Art Vandelay

Senior Member
Messages
470
Location
Australia
Re: sound -- actually, I've always had hyperacusis. (This is an old thread; maybe I already said this.) My students found it uncanny that I could hear them whisper from any corner of the room. As a young kid I used to literally cry at the volume of music my older sisters listened to in the car and in their rooms: I found it intolerable. As the youngest of three, you can imagine that they thought I found it 'mildly unpleasant' and was exaggerating my reaction, so I would try to hide how much it upset me. In fact, the really loud noises made me literally nauseated, I found them so unpleasant. Has anyone else experienced this?

Yes! This reminds me of my childhood (I got sick in my mid 20s). I used to be very sensitive to my brother "stomping around the house". I could feel the vibrations of his footsteps even when he was walking several rooms away. I also found the volume of his music and his "door slamming" pretty intolerable. No-one else in the family noticed.

It's only gotten worse since I came down with ME/CFS. For example, I can't cope when people listen to the radio, especially if there's lots of talking. Needless to say, I'm glad I live alone!
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I suspect that may be a result of the ME/CFS flat emotions symptom, which is listed in the CCC.

I have these flat emotions (aka: blunted or flat affect), and I find I don't respond or enjoy all the music I once loved, I suspect because a lot of music involves arousing the emotions, but if your emotions do not respond, the music seems flat and pointless.

Also, I find the ME/CFS sound sensitivity (hyperacusis) definitely does not help either, especially for the rock music that I used to like. A Jimi Hendrix guitar solo doesn't go well with ME/CFS sound sensitivity!

My guess is that the flat emotions that can appear in ME/CFS may result from hypothalamus dysfunction (the HPA axis is thought to be dysfunctional in ME/CFS), because the hypothalamus plays a role in emotional responses.

I am always trying to find drugs or supplements that might treat my flat emotion symptom.

Could the amygdala have anything to do with it?

It's an interesting question of whether music appreciation is due to emotional response or more of a brain response. I always thought it was a brain response to the quality of the music but surely it has to be at least partly an emotional response?

I don't the flat emotional effect, commercials make me cry lol, and I think in my case losing my music appreciation was mainly neurological because it happened after my ME/CFS started on it's neurological issues path and when I took supplements for that my music appreciation came back.

It applies more to classical music, but I definitely was bummed that I couldn't enjoy loud rock music. Now I can tolerate it a little more but only for a short time. I have sound sensitivity too and I also find the total engagement I used to have with rock music is way too tiring. I used to like to blast RUSH, lol.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
Ha! :D

Re: sound -- actually, I've always had hyperacusis. (This is an old thread; maybe I already said this.) My students found it uncanny that I could hear them whisper from any corner of the room. As a young kid I used to literally cry at the volume of music my older sisters listened to in the car and in their rooms: I found it intolerable. As the youngest of three, you can imagine that they thought I found it 'mildly unpleasant' and was exaggerating my reaction, so I would try to hide how much it upset me. In fact, the really loud noises made me literally nauseated, I found them so unpleasant. Has anyone else experienced this?

My husband has a superpowers type of hearing ability. He can hear what no human should be able to hear! It's really quite amazing but he is not sensitive to sound. Sound doesn't bother him in the least.

Sounds bother me but it works out because we can keep the tv on a low volume--he has no problem hearing it and the noise doesn't bother me and I use subtitles in case I can't hear what is said!

I never heard the term 'hyperacusis' before. I've heard of 'misophonia' so I looked them up to compare their meanings:

Hyperacusis makes normal environmental sound unbearable. Everyday sounds become ear-splitting music and mundane sounds appear amplified. Affected patients describe a low decibel sound as painfully loud. So, even if you speak softly, the person will feel as if you are uttering something loudly. ...it is believed to be occurring from head injury that damages the central auditory system. Other possible risk factors include brief exposure to noise, Lyme disease, brain infections such as meningitis, prolonged use of earplugs or earmuffs, and Bell's palsy.

Misophonia refers to aversion to certain sounds, no matter at what decibel they are being played. The person hates to hear a particular sound, not because he perceives it as loud; it is because he simply dislikes it, especially if it is repetitive. Misophonia has nothing to do with the volume of the sound. The person is comfortable hearing everyday sounds. It is just that particular patterns of sound, though soft, appear offending. For instance, sounds related to coughing, laughing, snoring, and yawning are extremely annoying for patients and make them angry.
It is thought to be associated with incorrect processing of sound waves in the brain.

So what I always thought was misophonia is really hyperacusis. Thanks for introducing that term. I guess sound sensitivity is really hyperacusis. But I guess they can overlap because while sound in general bothers me, I HATE the sound of motorcycles and the bass of music. Hyperacusis with a touch of misophonia, lol.

My niece and nephew have a particular intolerance for certain types of sound, which I also identify with: repetitive quiet noises really bother me because it's like they never 'fade into the background' as other people say. "I just stop noticing it." My senses never 'turn off' in this manner. It's the same for smells: "you get used to it." No, I really don't. I think without this ability to 'turn off' a sound, the constant and repetitive pull of your attention away from your train of thought is very irritating.

People say, 'just tune it out', 'ignore it', 'block it out' and when you say you can't they just look at you like you are purposely being stubborn and have a silly emotional block about it, because, of course, everyone can block out noise if they but try.

As I've gotten older, I've gotten better at directing my attention forcibly away from certain noises / sounds, and it bothers me less, but I think this is a matter of discipline and control that comes with age rather than that this symptom is actually 'better'. Often I'll be sitting at a restaurant and go, "oh, I love this song!" and everyone will look at me blankly. The background music has long since become 'background' for them. Their brows furrow and their heads tilt as they try to bring it back to the foreground of their brains, and ten seconds or so pass by in silence. Then, "...oh, this song!" or even "which song is it? I can't tell."

I've actually gotten better as I've treated my ME/CFS. I can actually block a few sounds now and I'm not so sensitive to every sound. I used to have to wear earplugs all the time including at work which was sometimes a problem.

It's a superpower on the one hand, and really irritating on the other hand.

You have the combination of sound sensitivity and being able to hear really well like my husband has. Maybe you have 'Enhanced Hearing'? I guess that would depend on whether you could just hear your students whispering or if you could actually hear what they were saying.

It also makes me wonder if PWME have anything genetically in common with PW Autistic Spectrum Disorders.

I always wonder this. Maybe the gene mutations esp. in methylation and detoxification are the same.

-J[/QUOTE]