pattismith
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My first feeling always was that my brain was too big for my head!
Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?
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StarChild56
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So late in responding but -
As you know I had severe neck pain but I have severe low back pain, as well which preceded my neck pain by years.
Anyway - I have it so bad many times but especially in the morning I can not stand up straight, going to the restroom is horrible, etc. The only thing that really has helped me is the Back 2 Lyfe machine...It saved me. It even helped my neck pain, everytime I used it. I try to use it 2x a day but I never do it until my low back is bad but it is amazing.
Can not buy them new any longer (except for $500 on Amazon) but I just bought a back up one on E bay and it is great (for like $90). There are 2 models and my preference is the kind I have which has a dial to turn to adjust to your height.
My husband threw his back out and this helped so much.
Sorry to be late and did not mean to derail this thread.
Violeta
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Wayne, have you found anything that significantly helped the vagus nerve issues?
Violeta
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Ah, I just did a search with your name and am finding your information. Thanks
Wayne
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Hi @Violeta -- One thing I recently started doing that I don't think I've posted on yet is self-acupuncture, and using it to stimulate my vagus nerve. I essentiallly insert 2-3 needles in my brainstem area, and it seems to be lessening my dysautonomia. It's a similar reaction I got from massaging the same area that I mentioned in my vagus nerve stimulation thread.
My Search For Tinnitus Relief Led to Discovery Of A Unique Vagus Nerve Stimulation Technique
Violeta
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Thanks, Wayne. That's very interesting. You're brave. I have a roller that has sharp points on it that you can roll over an area. I'm going to try that today.
I haven't been reading here consistently, but it seems as if you're feeling a lot better.
I am trying to figure out if I also should start taking anti-viral herbs again. I do have a history of viruses. Do you have an opinion on that?
I started taking some baking soda in water a couple of days ago, and I forget what made me come to the conclusion that it might be good for the symptoms, but it has been helping. I also ordered some Spry chewing gum, but haven't received it yet.
Rufous McKinney
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This is a simlar location where I wear biomagnets. They relieve quite a bit of the inflammation and pain. On my worse days, I often wear a scarf with two to four magnets on it...holding them at the base of my skull.
Rufous McKinney
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I just read that baking soda is reducing acidity in the Kidney/Bladder....and helps if your eating alot of protein.
Why did it take me until today to figure that out? Geez..so I just took some...
Wayne
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@ebethc -- You may want to check out this thread:
Woman's Significant Health Improvements Using Baking Soda - [Sodium Bicarbonate]
Violeta
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This is from selfhacked dot com I just prefer Spry because it is sweetened with xylitol instead of sugar.
CCK directly activates vagal impulses in the brain [52].
The ability of CCK to reduce food intake and appetite is dependent on the vagus nerve impulse to and from the brain [53].
Chewing gum helps increase CCK release.
Violeta
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This is where I saw that baking soda helps with vagus nerve. I started taking it a couple of nights ago and haven't had the terrible sick headache that I had been waking up with.
It has something to do with POTS, coat hanger pain, mast cell activation, hypoxia, and I don't know what else.
https://www.prohealth.com/library/b...-aid-autoimmune-diseases-like-arthritis-80783
The person I had been talking to when I came to the realization that I really should be taking baking soda then brought up her need for antihistamines, and then somehow we started talking about mast cell activation. Then I found this site. Do you have any allergies?
http://www.mastcelldisease.com/my-new-all-natural-rx/
Last edited:
Hi Wayne,
Now that's interesting, the brainstem area. Have you worked through the anatomy of the CCI surgery? I wonder if that might also involve removing a pinch or somehow reactivating the vagus nerve ...
Violeta
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This is interesting. Sodium bicarbonate might be so helpful for a very specific reason...it's absolutely necessary in the human body and for some reason we aren't making enough of it or we are needing more of it.
"Secretin, together with another hormone, cholecystokinin or CCK, increased bicarbonate production in humans, dogs, and rats."
Good Morning Everyone.....How many of us have had the extensive MRI's required to rule out the many causes of what we know as ME/CFS? There is no doubt in my mind that ME was the third/fourth diagnosis I received after the physical cause(s) of my illnesses were corrected.
First of, many of us possibly have an off-shoot of spina bifida, a very serious neurological condition. No, 99.5% of us probably don't have spina bifida, but depending upon our age, until fairly recently, we were born with things like Syringomyelia (also obtained in accidents, sports injuries, etc.) and Arnold-Chiari Malformation A congenital defect (we were born with it), tethered cord and so many other diagnoses. Then follows our usual viruses, which are harder and harder for the body to recover from, losing our physical abilities even though we have families, worked and managed to walk/cycle multiple miles/day. One day the body just gave up, and left it all to us.
It doesn't matter which came first...but I was told by my neurologist many, many years ago (I'm now 73) that he has found most people who have severe spinal cord or neck defects generally end up with ME. I think the longer we live the more that becomes a reality. Too many viruses alone can accomplish that.
It wasn't until we had a large group of babies born in the Rio Grande Valley of Texas that the final parts of the puzzle fell into place - (probably 10-20 yrs. ago) A very high percentage were born with anencephaly (lack of a brain). Death follows soon thereafter. The cause of this is a simple B-vitamin that the mothers lacked. That's why if you're thinking of becoming pregnant even, you should visit you OB-GYN to make certain that you have the proper vitamins. Don't take them on your own...an embryo/fetus has to be carefully protected. That then led researchers to some of the defects caused by the deficient vitamin. There were many, mine among them. I have so many defects that I can't deal with most of them. And I'm an up-front, get moving type of person. But one diagnosis led to 3 more things wrong. L. sided scoliosis is a sign that something is neurologically not right...that's simple, can be made by any pediatrician and is often followed by pain, lordosis and kyphosis. I, myself, had to wear braces and/or casts for my entire childhood. But you couldn't see inside the cord itself until the advent of the MRI.
Our diets today are not the best...especially if you eat a lot of fast food. If an embryo doesn't receive the proper nutrients in the first 3 mos. there is a greater change of birth defects. If you have one defect, you usually have more...that's Mother Nature at work. We pay for them our entire lives long. Personally, after have been through it and long before my diagnoses, I think that severe nausea in the first 3 mos. of pregnancy is nature's way of protecting the embryo. You're sick enough to care about what you eat, the smell of certain foods and alcohol can be overwhelming and you don't want them, exhaustion all help provide the developing embryo with what it needs. Not all women experience this, though.
I never told my mother...why would I? But prenatal vitamins have been around for a long, long time...so for the most part the embryo/fetus is protected. The importance of vitamins was recognized in the 1950's and at the turn of the last century. It's an interesting history. The name of Kellogg for example, is a leftover from the food movement started back then (turn of the last century). We've been down this road before.
So, now we have a cause for some of the ME cases, Jen's case shows another one...how many more are out there to be discovered. Some for sure,I think we can all agree on that.
But my ME problems are just as distressing at times, as my many others. Genetically, I'm a mess. The older I get, the more there is to be discovered. I don't/won't own some of them because I'm a bit too old to wait 2 yrs. be put on meds that cause another problem...do you see the road I'm on?
Jen's now retiring and will become a part of the Board. Good for her and her husband, family and friends. It takes tremendous effort to both be ill, look for good medical care, have surgeries & be a volunteer and perhaps most important of all to everyone, a filmmaker..
Then you find the proper neurosurgeon, and suddenly everyone is retiring and new people have to start all over again. However, this has happened: More and more neurosurgeons have/will be trained and you may not have to travel as far afield. No one is going to guarantee 100% a good outcome. But there is no doubt that an experienced neurologist and neurosurgeon will save you a lot of heartache. We do need the names of these people and places in every state imaginable. Volunteers (especially those now in that area) can help in that matter.
My ME illness has most of the same descriptions as that of ME. Unfortunately, severe nerve damage had occurred before it was found. Second, damage to the sleep center of the brain...nothing helps it except letting it settle into its own routine. Every one of us will be different in some manner. Please accept that...there will never be a one size all approach to our conditions. How I wish!! Do your best, I wish you well. Yours, Lenora
First of, many of us possibly have an off-shoot of spina bifida, a very serious neurological condition. No, 99.5% of us probably don't have spina bifida, but depending upon our age, until fairly recently, we were born with things like Syringomyelia (also obtained in accidents, sports injuries, etc.) and Arnold-Chiari Malformation A congenital defect (we were born with it), tethered cord and so many other diagnoses. Then follows our usual viruses, which are harder and harder for the body to recover from, losing our physical abilities even though we have families, worked and managed to walk/cycle multiple miles/day. One day the body just gave up, and left it all to us.
It doesn't matter which came first...but I was told by my neurologist many, many years ago (I'm now 73) that he has found most people who have severe spinal cord or neck defects generally end up with ME. I think the longer we live the more that becomes a reality. Too many viruses alone can accomplish that.
It wasn't until we had a large group of babies born in the Rio Grande Valley of Texas that the final parts of the puzzle fell into place - (probably 10-20 yrs. ago) A very high percentage were born with anencephaly (lack of a brain). Death follows soon thereafter. The cause of this is a simple B-vitamin that the mothers lacked. That's why if you're thinking of becoming pregnant even, you should visit you OB-GYN to make certain that you have the proper vitamins. Don't take them on your own...an embryo/fetus has to be carefully protected. That then led researchers to some of the defects caused by the deficient vitamin. There were many, mine among them. I have so many defects that I can't deal with most of them. And I'm an up-front, get moving type of person. But one diagnosis led to 3 more things wrong. L. sided scoliosis is a sign that something is neurologically not right...that's simple, can be made by any pediatrician and is often followed by pain, lordosis and kyphosis. I, myself, had to wear braces and/or casts for my entire childhood. But you couldn't see inside the cord itself until the advent of the MRI.
Our diets today are not the best...especially if you eat a lot of fast food. If an embryo doesn't receive the proper nutrients in the first 3 mos. there is a greater change of birth defects. If you have one defect, you usually have more...that's Mother Nature at work. We pay for them our entire lives long. Personally, after have been through it and long before my diagnoses, I think that severe nausea in the first 3 mos. of pregnancy is nature's way of protecting the embryo. You're sick enough to care about what you eat, the smell of certain foods and alcohol can be overwhelming and you don't want them, exhaustion all help provide the developing embryo with what it needs. Not all women experience this, though.
I never told my mother...why would I? But prenatal vitamins have been around for a long, long time...so for the most part the embryo/fetus is protected. The importance of vitamins was recognized in the 1950's and at the turn of the last century. It's an interesting history. The name of Kellogg for example, is a leftover from the food movement started back then (turn of the last century). We've been down this road before.
So, now we have a cause for some of the ME cases, Jen's case shows another one...how many more are out there to be discovered. Some for sure,I think we can all agree on that.
But my ME problems are just as distressing at times, as my many others. Genetically, I'm a mess. The older I get, the more there is to be discovered. I don't/won't own some of them because I'm a bit too old to wait 2 yrs. be put on meds that cause another problem...do you see the road I'm on?
Jen's now retiring and will become a part of the Board. Good for her and her husband, family and friends. It takes tremendous effort to both be ill, look for good medical care, have surgeries & be a volunteer and perhaps most important of all to everyone, a filmmaker..
Then you find the proper neurosurgeon, and suddenly everyone is retiring and new people have to start all over again. However, this has happened: More and more neurosurgeons have/will be trained and you may not have to travel as far afield. No one is going to guarantee 100% a good outcome. But there is no doubt that an experienced neurologist and neurosurgeon will save you a lot of heartache. We do need the names of these people and places in every state imaginable. Volunteers (especially those now in that area) can help in that matter.
My ME illness has most of the same descriptions as that of ME. Unfortunately, severe nerve damage had occurred before it was found. Second, damage to the sleep center of the brain...nothing helps it except letting it settle into its own routine. Every one of us will be different in some manner. Please accept that...there will never be a one size all approach to our conditions. How I wish!! Do your best, I wish you well. Yours, Lenora