ME caused by squeezed nerve?

[Wayne]

Regarding TMJ Issues, the following is a link to a testimonial by a woman with FM who went to a TMJ dentist and got significant relief:

Oral Systemic Balance

Here's the introductory paragraph:

Oral Systemic Balance is the therapy that provided the catalyst for my recovery from years of chronic illness. Developed by a TMJ dentist named Farrand Robson, the therapy employs oral appliances to help patients breathe better and restore balance to the autonomic nervous system. I was a patient of Dr. Robson's for two years beginning in 2007 and as a result pulled out of the downward trajectory that my health had been on for over 20 years. One of the reasons I started my blog was to share information about this therapy with others. I estimate that I got initially 30% better with this therapy and since wearing my appliances I have suffered no relapses.

 

[Hip]

Very interesting, @Wayne.

That Oral Systemic Balance developed by Dr Farrand Robson which uses oral dental appliances to reposition the jaw sounds very similar to Dr Amir's approach.

My guess is that these dental appliance techniques may work better for fibromyalgia patients, since as mentioned above, in TMJ dysfunction, substance P is released into the cerebrospinal fluid when the trigeminal nerve (which runs through the lower jaw) is stimulated, and substance P would appear to be intimately involved with the etiology of fibromyalgia. By fixing TMJ, you should reduce substance P release, which in turn may ameliorate the fibromyalgia.

 

[Wayne]

Very interesting, @Wayne.That Oral Systemic Balance developed by Dr Farrand Robson which uses oral dental appliances to reposition the jaw sounds very similar to Dr Amir's approach.

Just ran across this bookmarked (impressive) testimonial by a woman who went to see Dr. Amir:

Recovery from Chronic Fatigue Syndrome (CFS)

 

[Wayne]

I'm a big believer in tracking down any structural issues that may be impacting our health, whether it's a pinched nerve, TMJ, nasal obstructions, etc. The following is an account of a woman who recovered from FM by addressing the "mater" system along the spine.

After 9 Long Years – Wife is Cured of Fibromyalgia Pain (A Husband’s Story)

 

[ukxmrv]

If someone had this as onset

"Terrible pains traveled from my right ear down the right side of my jaw and under my tongue. This would alternate from pain to numbness and loss of feeling in this area. The symptoms in my head and neck got worse and my body became subject to profound fatigue which concentrated more on the right than on the left side of my body. "

We are all trying to treat ourselves and to find people to help. Faced with an enormous range of possible doctors, alternative practitioners, drugs, supplements, devices we need to spend some quality and safety controls.

The issues that the original poster was asking about are different to the links posted.

Mr Amir as an example isn't a carpenter and I'm sure if asked he wouldn't claim to have a 100% rate on ME and CFS and to have cured 40/ 70 people with ME and CFS while working around his carpentry.

 

[Hip]

The issues that the original poster was asking about are different to the links posted.

Mr Amir as an example isn't a carpenter and I'm sure if asked he wouldn't claim to have a 100% rate on ME and CFS and to have cured 40/ 70 people with ME and CFS while working around his carpentry.

The purpose of the links I posted about Dr Amir was to show that there is some plausibility, and indeed treatment success, with the general ideas held by this carpenter-healer, who believes that ME/CFS is caused by the atlas bone being misaligned, and squeezing some nerves.

Dr Amir treats both jaw misalignment and atlas vertebra misalignment, whereas according to @optimist's first post, our carpenter focuses on the atlas. Although I obviously cannot say whether his treatment will work, I can say that the concept does appear to have plausibility. I myself would be tempted to try it, although I would be put off by the fact that the treatment does seem very intensive (treatment 4 or 5 days a week for 6 months) and possibly therefore expensive in the long run.

 

[Gingergrrl]

I am not sure if the woman in the example with Dr. Amir actually had ME/CFS as defined by the CCC/ICC criteria. She did not mention PEM or some of the core symptoms.

It seemed more like she had TMJ, ear problems, eye problems that were all related and impaired her ability to eat and made her weak and fatigued. I believe she was very ill and that Dr. Amir probably saved her life but just not sure she had ME/CFS?

 

[optimist]

Sorry for not popping in more frequent on this post, but it has just been too hot today, and I have a hard time gathering my thoughts But a big thank you to all for all the contributions.

 

[IreneF]

So are you saying that that Uzma Qureshi's cure from her probable ME/CFS illness through TMJ treatment was just imagined? To me it would not seem inconceivable that, in some small subset of patients with ME/CFS or ME/CFS-like conditions, their illness arises from or is exacerbated by some physical dysfunctions of the nerves.

It should be noted that higher levels of substance P are found in TMJ dysfunction patients. Substance P is released into the cerebrospinal fluid when the trigeminal nerve (which runs through the lower jaw) is stimulated.

Substance P is also found raised in the cerebrospinal fluid of fibromyalgia patients, and may be driving the symptoms of fibromyalgia. Substance P stimulates pain receptors in the body.

Now since temporomandibular joint disorder is a comorbid condition found in fibromyalgia, it is quite feasible that the substance P released by the TMJ dysfunction may be exacerbating the fibromyalgia, and thus TMJ treatment may lead to some remission from fibromyalgia.

I can't evaluate individual claims. We've all had sincere and enthusiastic people recommend something that "cured a friend". The explanation just didn't make sense to me.

 

[Tired of being sick]

Thank you for making this thread optimist!!

The contributors actually made it very positive!!

The vagus nerve happens to be in the area of the body where I had many head and neck injuries

So this makes crystal clear sense
It has many names as well

Vagus Nerve
The vagus nerve (/ˈveɪɡəs/ VAY-gəs), also called the pneumogastric nerve, is known as the tenth cranial nerve, or simply CNX

The vagus nerve is the longest of the cranial nerve. Its name is derived from Latin meaning "wandering".

Absolutely True to its name!!

 

[Tired of being sick]

This is very interesting as well!!

What is Vagus Nerve Stimulation?
Vagal Nerve Stimulation is a non-drug treatment for epilepsy that utilizes the vagus nerve to send signals to the brain. The vagus nerve, the longest cranial nerve, travels from the brainstem, down the neck, into the chest and abdomen to influence activity in many organs. When a patient has a VNS device implanted, small electrical signals are sent from the device to the vagus nerve and travel up into the brain. The device is programmed by the doctor to deliver these signals (or “stimulate”) at periodic intervals.

Initially, stimulation is usually set to occur 30 seconds every five minutes. The doctor then adjusts these parameters according to patient tolerance and seizure response in follow up visits. The patient also has a degree of control over the VNS. Each patient receives a magnet that activates the device. When the patient or caregiver “swipes” over the device with the magnet, the VNS turns "on" and delivers a stimulus. This allows a patient who feels an aura coming on, or a caregiver who sees the start of a seizure, to try to stop the seizure.

What is Vagus Nerve Stimulation (VNS) surgery?
Vagus Nerve Stimulation (VNS) surgery involves the surgical implantation of a stimulating device, a 6 centimeter wide disc which looks like a pacemaker. An incision is made along the outer side of the chest on the left side, and the device is implanted under the skin. A second incision is made horizontally in the lower neck, along a crease of skin, and the lead from the stimulator is wrapped around the vagus nerve. The brain itself is NOT surgically involved in VNS surgery. The device battery lasts for approximately 5 years, after which many patients choose to have repeat surgery to replace the battery.

Compared to standard epilepsy surgery, VNS surgery is relatively minor. The procedure takes 1-2 hours, requires general anesthesia, and most patients return home the same day of surgery.

- See more at: http://epilepsy.med.nyu.edu/diagnos...stimulation-vns#sthash.N974jkuG.GvFmrhum.dpuf

 

[Tired of being sick]

Google search of:>vagus nerve stimulation for CFS/ME and POTS

Michael VanElzakker Ph.d Talks – About the Vagus Nerve ...
simmaronresearch.com/.../michael-vanelzakker-ph-d-talks-vagus-nerve-i...
by Cort Johnson - Feb 14, 2014 - Michael VanElzakker's Vagus Nerve Infection Hypothesis (VNIH) for ... mechanism of vagus nerve stimulation for epilepsy or depression. ... in ME/CFS because they have difficulty accessing the vagus nerve where the viruses are present ..... I also have dysautonomia (POTS) and serious stomach issues so ...

Awesome!!!

 

[Hip]

I am not sure if the woman in the example with Dr. Amir actually had ME/CFS as defined by the CCC/ICC criteria. She did not mention PEM or some of the core symptoms.

It seemed more like she had TMJ, ear problems, eye problems that were all related and impaired her ability to eat and made her weak and fatigued. I believe she was very ill and that Dr. Amir probably saved her life but just not sure she had ME/CFS?

Agreed, it's hard to say whether she had CCC/ICC ME/CFS or something else, but I think this certainly indicates that TMJ realignment can have a profound effect on health, at least in some cases.

 

[optimist]

Actually, I was at a beach in the Mediterranean sea in 2006 where we were "diving" into the waves as they came towards us. I was unfortunate one time and was taken by a wave head first and dragged down to the bottom smashing my head so hard I feared my neck had broken.

According to my memory my friends said they saw my standing up, but not standing straight, but swinging - so they said they came to take me up on the beach. I found it strange because I could not remember that myself.

So... there is a possibility something funny could have happened to the nerves in my neck at that point...

 

[Hip]

@optimist
Did that bash to the head occur before you developed ME/CFS?

 

[optimist]

yes - I believe the ME came around 2011...

 

[Tired of being sick]

I edited post #32 to

Well, this man is working as a carpenter, so this is something he would do on his spare time.

Whoa

and i apologize..........

 

[optimist]

@Tired of being sick Not to worry!

 

[Gingergrrl]

Actually, I was at a beach in the Mediterranean sea in 2006 where we were "diving" into the waves as they came towards us. I was unfortunate one time and was taken by a wave head first and dragged down to the bottom smashing my head so hard I feared my neck had broken.

According to my memory my friends said they saw my standing up, but not standing straight, but swinging - so they said they came to take me up on the beach. I found it strange because I could not remember that myself.

So... there is a possibility something funny could have happened to the nerves in my neck at that point...

@optimist After hearing this part, I do think that this type of treatment could help you. However, I would go to a reputable professional for an assessment versus the guru/carpenter guy that your friend is recommending.

Agreed, it's hard to say whether she had CCC/ICC ME/CFS or something else, but I think this certainly indicates that TMJ realignment can have a profound effect on health, at least in some cases.

@Hip I totally agree and I do think there are treatments that seem "alternative" but when we research them more, have a basis and merit behind them. I don't think any of this would apply to me as I have never had TMJ or jaw pain.

 

[Tired of being sick]

My head and neck injury history........

So I never got to experience what it was to have a normal healthy life as a teen or adult..

I thought everyone felt the way i did so it took a very very long long time for me to realize that my life and abilities were nowhere near normal in fact I realized that they were not even in the same solar system!!

Which makes perfect sense of why I was alienated my entire life once anyone and everyone (outside of my family) knew me..........


My head and neck injury history........
Injury history:

1978: Motorcycle accident
Knocked unconscious for 30 to 45 minutes (I Believe this caused Narcolepsy,CFS,
Sleep Apnea, non restorative sleep or unable to reach stage 3,4 sleep)

Both wrists were broken(left required surgery(compound fracture) also lost all control of left arm
for close to a year.Dr Searfoss told me I had permanent nerve damage and
would never be able to build left muscles back to natural strength.

6 inch laceration on shin of left leg that required stitches.
Hole in skin down to the muscle of left outer left leg approximately
3 inches below hip joint.
Was hospitalized for about a month.(They ran a lot of brain tests on me but I have no record of what they found)
I could not stay awake the majority of time during my stay..
The only thing that awoke me was extreme left arm pain
(cause dr. set arm wrong)
So then the nurse would come in and give me a shot of pain killer, then off to sleep
I went until pain awoke me again. which was a viscous never ending cycle
the entire time I was hospitalized..
This continued at home ALL summer as well, except there was no pain medicine prescribed to me.
After the pain left.The sleepiness stayed with me from there on..
When I returned to school,` slept through grades 7th,8th(twice)9th,
10th 11th and 12th were a little better but not much..

I remember falling asleep standing up in the (11th grade)Vocational school while teacher had us huddle around him for demonstration..Then he up and teed off by slapping me across my face!


6 months later Dr. Searfoss had to re-perform surgery
because he set left wrist wrong during original surgery.

1981:2 bicycle accidents within 3 days (Head injuries)
1st accident, I was jumping a ramp while in the air,the front end of bike
nose dived causing me to go over the handle bars, face plant into a mud puddle
while the bicycle landed on the back of my head, sprocket first, splitting my head open.
lost a lot of blood and required 18 stitches...
2nd accident,2 days later,I was riding a ten speed along the highway carrying a hand saw
in right hand while gripping the handle bar.
A car went by and the wind from car blew the saw into the front spokes causing me to flip
over handle bars and face plant into gravel on side of highway,piece of gravel implanted in
right side of forehead while the front of bicycle seat gashed the rear of head open in a
different place than the 1st gash from 1st accident..
Required stitches in the back of head and right forehead.
1983: Lumbar deformity discovery
During a routine physical at Vo-Tech school,Dr.discovered a curve in my lower lumbar
section of spine.
Told me to see a chiropractor ASAP
1986:Football neck injury.
Led into tackle with the crown of my head while another player made contact at the same time
on the direct opposite side which caused tremendous force on my neck causing it to crack,
compacting inward,felt like neck collapsed liken to a turtle
Chiropractor began treating neck as well.
1987:2 car accidents within 4 month span causing whiplash
July of 87 I was pulling into drive way while a car rear ended me at approximately
45 mph causing my head to violently snap back then forward like a whip.
Neck was very stiff for about 2 - 3 weeks.
October 87, was driving around a 90 degree curve on outside lane while a truck failed to make
turn on inside lane,t-boned me on driver side door and front fender causing my neck to violently snap like a whip
to the right then snap back to the left into driver door window causing window to shatter into tiny pieces.
Neck was stiff for about a week and a half
1991:Knocked unconscious
I was a passenger on a ATV,
Driver failed to make a 90 degree turn on a dirt N graveled road
I only remember right before we entered the turn...
Driver got me to regain consciousness about 5 minutes after accident
about 20 feet into the woods, Apparently my body was bouncing off trees
on the way to its resting spot....
had bruises all over body but did not receive treatment.
1995:Another neck injury
Passenger in a truck.The driver violently veered up on bank then back off quickly
causing my body to violently swing back then forward like a whip head first into
windshield, shattering it.......
causing left side my forehead and partial crown to downward crunch my neck
Head causing neck to absorb all of the force of impact..
Put a nice sized lump on forehead , black eye,neck stiffness for a couple weeks..
2001:Knocked unconscious
In July I was driving a quad on trail by myself and the next thing I remember
woke up in the woods with eyebrow area of left eye split open with multiple
small cuts all over scalp
Eyebrow required stitches while blackeyed and swollen shut..
2003:Another neck injury
I was a passenger in a car with a work partner on a ramp ready to enter turnpike.
I was looking at my check and the driver abruptly slammed on the brakes causing me
to fly violently, crown first,into the windshield..
Windshield shattered and had imprint of the crown of my head protruding out about 2 inches..
2004:Another neck injury
Practically Identical to the injury in 1995!