sensitive to sounds?

[loki]

Hi!
'm not sure if this relates to anyone else but one mayor symptom that i would like to share is the sensitivity to sounds that developed over the time.

It often happens with loud and high pitched sounds (i was a musician when i was healthy) that roar in my ears and i get irritated and often i loose my train of thought (i always loose them but when i hear sounds more often). Can anyone relate to this?



ok iwill editmy first post ( i got put on Ritalin these days and the first days i screamed at everyone coming around, crashed and cried all day, and crying doesn't solve problems and it got better now)


I had a couple of questions
1. Did you experience a desinterest in listening to music, playing music on instruments since the onset of your illness?
2. Are there phases where you are more tolerant to noises than not?
3. If you take any medication, have you experienced a decline OR increase in noise tolerance with any medication? If yes, what drug caused it?
4. Can you pinpoint when the intolerance to noises began? Can you point the last time you experienced intolerance to noises?

 

[Merida]

Hey, Loki, I was at the same place mentally, and still go there occasionally- after 17 years. Each day is a challenge and I get so tired of lying on the couch with my iPad. Don't think we can ever lose hope that getting better is possible and, indeed, likely. I did eventually get well enough to enjoy some simple pleasures in Life, but I am still exploring all ideas and possibilities.

I had the extreme sensitivity to sound right after the neck/pelvis injury that started this mess. The alignment of the pelvis has huge influence on the neck and cranial bones. Cranial nerve # 8 controls hearing and balance. Read about cranial nerve symptoms. If your atlas ( C-1) is out of alignment from injury, or rotated due to scoliosis, spinal fluid flow and blood flow to and from the brain can be affected, causing pressure on cranial nerves, brain stem, cerebellum. The only way I know to correct this is NUCCA chiropractic ( gentle, safe) or with a traditional osteopath. Some acupuncturists can do this, too.

Also, I use a lot of on line QiGong, meditative videos. May the Force be with you.

 

[Seanko]

@loki Yes, sound & light sensitivity is very common. Some days I am a danger to know!
Research suggests that the nervous system is dysfunctional in ME/CFS with part of it ramped up eg hearing & others turned down eg the restorative parasympathetic nervous system.

There are probably a few things you can still do to relax & chill it eg meditation & switching off your electronic devices (phone & PC).
Bruce Campbell's CFIDS Self Help site is a good place to start.
Sensory Overload: Sources and Strategies

 

[Merida]

Seanko, yes! And it is interesting that sympathetic nerves wrap around the vertebral arteries that thread through foramina or holes in the lateral sections of the cervical vertebrae. So, rotation the the vertebrae ( including C1) also stresses important sympathetic nerves.

 

[Cort]

Hi!
'm not sure if this relates to anyone else but one mayor symptom that i would like to share is the sensitivity to sounds that developed over the time.


It often happens with loud and high pitched sounds (i was a musician when i was healthy) that roar in my ears and i get irritated and often i loose my train of thought (i always loose them but when i hear sounds more often). Can anyone relate to this?

It's so annoying... i lost my feelings, my friends, my musical talent, my happy attitude, my shape, my voice, my intelligence, my personality, my drive for so many things... i really don't know for what i should continue life... i was happy once, then everything felt apart.

Hey Loki are you talking about tinnitus (high pitched sounds in your ears) or a sensitivity to external high pitched sounds?

I developed tinnitus a couple of years ago. Sometimes it's loud and other times its not.

 

[Cort]

@loki Yes, sound & light sensitivity is very common. Some days I am a danger to know!
Research suggests that the nervous system is dysfunctional in ME/CFS with part of it ramped up eg hearing & others turned down eg the restorative parasympathetic nervous system.

There are probably a few things you can still do to relax & chill it eg meditation & switching off your electronic devices (phone & PC).
Bruce Campbell's CFIDS Self Help site is a good place to start.
Sensory Overload: Sources and Strategies

A sensory overload video - who knew? Thanks for providing that. It's going in the media section.

 

[Merida]

I have had both aspects. Initially every sharp sound, like a door closing, was uncomfortable. I found the name of this - hyperacusis. This was on/off several years. But now the hearing issue has developed into high pitched ringing and whooshing.

 

[Seanko]

This was on/off several years. But now the hearing issue has developed into high pitched ringing and whooshing.

Do you get the whooshing when standing? If so, then it's probably an inner ear thing..related to Orthostatic Intolerance.
One of the endings of the vagus nerves is in the ear...

I'll stop there & let somebody more learned take over

 

[loki]

Ok. There has to be a solution. I guess this sensitivity to sounds (especially high frequencies) is a piece in the puzzle.

first, i have some questions to you:

1. Did you experience a desinterest in listening to music, playing music on instruments since the onset of your illness?
2. Are there phases where you are more tolerant to noises than not?
3. If you take any medication, have you experienced a decline OR increase in noise tolerance with any medication? If yes, which?
4. Can you pinpoint when the intolerance to noises began? Can you point out the last time you experienced an intolerance?

Thank you! I try to find a solution to this problem(s).

 

[loki]

What really is a riddle to me is the fact that even with Methylphenidat high dose, there still seems to be this intolerability towards noises. Even if they come from music!! That really grinds my gears because i loved music all my life, and now, i have to stay away from it! It is just unfair!

 

[Seanko]

@loki I share your frustrations. The noise intolerance gets worse with lower energy & higher stress levels.

Managing sensory overload eg avoiding multi-tasking & relaxation is probably your best strategy. The symptoms will rise & fall with your overall ME/CFS symptoms.

 

[loki]

but it's hard to avoid multi tasking because it's so damn important nowadays... also it's hard to avoid music if you're a musician
i want to get back to the person i was before i took Interferon alpha 2a. it's my only goal these days and i will not stop to search for a cure and if i die i don't care much. I just try to get back to life.

 

[loki]

Hey, Loki, I was at the same place mentally, and still go there occasionally- after 17 years. Each day is a challenge and I get so tired of lying on the couch with my iPad. Don't think we can ever lose hope that getting better is possible and, indeed, likely. I did eventually get well enough to enjoy some simple pleasures in Life, but I am still exploring all ideas and possibilities.

I had the extreme sensitivity to sound right after the neck/pelvis injury that started this mess. The alignment of the pelvis has huge influence on the neck and cranial bones. Cranial nerve # 8 controls hearing and balance. Read about cranial nerve symptoms. If your atlas ( C-1) is out of alignment from injury, or rotated due to scoliosis, spinal fluid flow and blood flow to and from the brain can be affected, causing pressure on cranial nerves, brain stem, cerebellum. The only way I know to correct this is NUCCA chiropractic ( gentle, safe) or with a traditional osteopath. Some acupuncturists can do this, too.

Also, I use a lot of on line QiGong, meditative videos. May the Force be with you.

Wow, i cannot imagine how horrible your situation is at the moment, but it sounds like life hit you hard cranial nerve damage and anormal spinal water flow leads to serious symptoms that are beyond my imagination... I can read from your post that you're tied to your couch... i too was tied to my bed for a year after Inteferon hit me and only a miracle idea that i had made me walk and run again. I still have serious issues but at least i am mobile... though all my feelings are "destroyed"... it's just a mess. But nearly everything can get repaired and you should have hope for a better life. It will come around one day!

 

[Merida]

Wow, i cannot imagine how horrible your situation is at the moment, but it sounds like life hit you hard cranial nerve damage and anormal spinal water flow leads to serious symptoms that are beyond my imagination... I can read from your post that you're tied to your couch... i too was tied to my bed for a year after Inteferon hit me and only a miracle idea that i had made me walk and run again. I still have serious issues but at least i am mobile... though all my feelings are "destroyed"... it's just a mess. But nearly everything can get repaired and you should have hope for a better life. It will come around one day!

Loki,
My intolerance to sound began immediately following the neck/ pelvis injury that started this mess. But I recall I had very slight ringing in ears prior to injury. When my atlas ( cervical vertebrae 1) is "out" I am worse. I also get painful right outer ear. I think ( but don't know at all) that the rotation of some neck vertebrae occurred because of a mild scoliosis. This is known to occur. ( look up Valentyn Serdyuk, orthopedic surgeon, scoliosis). Scoliosis of varying degrees runs in my family. In 1998 I saw a regular chiropractor ( first time ever) for hip pain. He rotated and jerked my neck and pelvis. That started everything. My neck improved with NUCCA chiropractic, and another special body worker. My son has also experienced this sound sensitvity, and his symptoms started with a virus. But, he was delivered with a suction device, and I wonder if this hurt his neck originally ?

 

[Merida]

Loki,
What you mention about feelings is very interesting. I wonder what part of the brain is involved here? After years in traditional medicine, I have branched out to other areas. Do you know about osteopathic craniosacral therapy? qigong ? Neuro linguistic programming ? Look on You tube at Faster EFT with Robert Smith. Interesting stuff. Some of these practitioners say that certain people ( yeah, the real sensitive ones!) actually hold the energy of physical and emotional trauma in our bodies.

John Upledger, osteopath, talks about "energy cysts." He says that the body tries to concentrate disparate trauma energy into the smallest possible 'cyst.' But still, these energy cysts can cause multiple symptoms. To get well, the energy cysts must be released. Believe it or not, I have experienced these energy releases with a traditionally trained osteopath - who may also be a qigong master? This is ongoing, but my osteopath says I will get better. I will certainly be yelling from the roof tops when that happens.

Keep searching. Don't give up. There have to be answers.

 

[loki]

I've never been to Osteopaths and, seriously, the guy who prescribed me Interferon destroyed my faith in western medicine and doctors in general.
I became my own doctor. The internet is a unbelievable large library of medical articles and opinions from different sides on various themes.
I try to study the depths of the central nervous system, nerves in general, the pharmacology of transmitters, genes and different types of cells inside the nervous system, their receptors, their ligands, their agonists, their antagonists, chemistry of medicine and the effect on transmitters and inflammation.
Inflammation of the central nervous system is my main part of researching and studying. When i go to doctors i don't try to explain stuff because many doctors are embarassed and get upset when someone "knows more than them" on a certain subject and I am quiet. I just try to explain my symptoms and try to get scripts for various drugs to test them on myself and see if i was right in my part of research. For example I had the suggestion that the problem lies in cells called the microglia and that their uncontrolled activity leads to the symptoms. Microglia is part of the first line defense in the CNS. So called, immune system.
TLR4 is a receptor which is responsible for activating the innate immune system, so i looked into antagonists for TLR4. I found various drugs, the first I tested was naltrexone. I got out of my bed and walked! I walked! It was like my birthday and christmas together for me! It was a miracle and i was so happy to walk!
So, in the end, I got a confirmation of my speculation that the cause of the various symptoms should with a high probability is a interferon induced oversensitive CNS immune system.
It may not sound like a huge archivement but at least I made a step forward. Not backwards. And no doctor I know would work like me to diagnose things.

 

[Merida]

I've never been to Osteopaths and, seriously, the guy who prescribed me Interferon destroyed my faith in western medicine and doctors in general.
I became my own doctor. The internet is a unbelievable large library of medical articles and opinions from different sides on various themes.
I try to study the depths of the central nervous system, nerves in general, the pharmacology of transmitters, genes and different types of cells inside the nervous system, their receptors, their ligands, their agonists, their antagonists, chemistry of medicine and the effect on transmitters and inflammation.
Inflammation of the central nervous system is my main part of researching and studying. When i go to doctors i don't try to explain stuff because many doctors are embarassed and get upset when someone "knows more than them" on a certain subject and I am quiet. I just try to explain my symptoms and try to get scripts for various drugs to test them on myself and see if i was right in my part of research. For example I had the suggestion that the problem lies in cells called the microglia and that their uncontrolled activity leads to the symptoms. Microglia is part of the first line defense in the CNS. So called, immune system.
TLR4 is a receptor which is responsible for activating the innate immune system, so i looked into antagonists for TLR4. I found various drugs, the first I tested was naltrexone. I got out of my bed and walked! I walked! It was like my birthday and christmas together for me! It was a miracle and i was so happy to walk!
So, in the end, I got a confirmation of my speculation that the cause of the various symptoms should with a high probability is a interferon induced oversensitive CNS immune system.
It may not sound like a huge archivement but at least I made a step forward. Not backwards. And no doctor I know would work like me to diagnose things.

Loki, Sounds like you are a good researcher with good intuitive leaps . I have thought of trying low dose naltrexone, but must complete my opiate wean first. Yes, inflammation in the CNS has always made sense to me.
Whether caused by a virus or by irritated nerve tissue from too much pressure ( poor CSF drainage) or tension on the spinal cord. Also check out 4 amino pyridine. This may help rebuild damaged myelin, and is used in multiple sclerosis. A neurologist who was a spinal cord injury specialist prescribed to me, but I had trouble getting to high enough dosage.

 

[loki]

yes that makes sense! I don't know if pressure can actually lead to inflammation but when the pressure is constant and the nerves are frequently used it really makes sense to me...

 

[Merida]

yes that makes sense! I don't know if pressure can actually lead to inflammation but when the pressure is constant and the nerves are frequently used it really makes sense to me...

Pressure- Yes! Think about bed ridden elderly who developed pressure sores on their bodies.

 

[loki]

isn't it possible to relieve the nerves with an operation?