Fibromyalgia Autonomic Nervous System Problems Linked to Pain in Fibromyalgia

Grace2U

Active Member
Cort,
Geez. I just can't believe this. Over 17 years I have seen about 6 neurologists. At least I finally got another diagnosis that makes sense.
I am 'jumping ship' and requesting an appt. with a very well-known neurosurgeon/ researcher in L.A. - an expert in vertebral artery/cervical artery/venous blood flow. After reading about vertebral artery syndrome following chiropractic neck injury, I realize that my story fits perfectly. So, I will see where this leads.

Of important interest, dissection of the vertebral or other neck arteries can occur spontaneously - and are of special concern in those with connective tissue disorders - EDS people !! Sometimes the only or main symptom is headache. Any sudden visual symptoms are very suspect that such an event may have occurred. There is great variability in how this can present. Have any EDS people been evaluated for this ???

i wrote to an important (and great) Chiari site about these neck arterial dissections, which can produce exactly the same symptoms as Chiari. Looks like no ( or few ???) Chiari people have had MR angiograms ??? Wow.

I am looking for a good article to post.
Hi Merida :) I vaguely remember reading this post and just now reread it. Were you able to get an appt?

This is the YouTube that excited me....


Does the video describe yet another procedure? If only it could be this easy...

The following is what I found on the TVAM procedure done by a specialist in CA.


TVAM (Transvascular Autonomic Modulation) is a promising new treatment for patients with autonomic dysfunction, or dysautonomia. The procedure involves modulation of the nerve fibers surrounding the vein. These afferent autonomic fibers are nerves that function as a conduit for communication between the body and the ANS. TVAM works by stimulating them activates a specific reflex responsible for regulation of venous tone. This venous distension reflex, when activated leads to increased sympathetic tone. The procedures modulation of sympathetic tone leads to improved autonomic function in many patients. http://autonomicspecialists.com/dysautonomia-3/
 

AnneVA

Active Member
Huge caution in the POTS community concerning this TVAM treatment. Here is a copied/pasted warning from another POTS site.

"It is extremely important to be aware that the Clinical Affairs Committee of the American Autonomic Society, which is made up of some of the best doctors there are for Dysautonomia, has issued a very grave warning about a procedure called TVAM (Transvascular Autonomic Modulation).
TVAM is being promoted by a group called Synergy Health as a treatment for POTS, Dysautonomia, MS, Lyme, Fibromyalgia and Chronic Fatigue.
Please read the statement, below, issued by the American Autonomic Society."

http://link.springer.com/article/10.1007/s10286-013-0217-7/fulltext.html
Endovascular procedures for the treatment of autonomic dysfunction

Christopher Gibbons1 , William Cheshire2, Alexandru Barboi3, Benjamin Levine4, Brian Olshansky5,Laurence Kinsella6, Victoria E. Claydon7, Craig Crandall8, Gregory Fink9, Michael Joyner10,Vaughan Macefield11, Lucy Norcliffe-Kaufmann12, Roy Freeman1, Satish Raj13, Julian Stewart14,Paola Sandroni10, Horacio Kaufmann12 and Thomas Chelimsky1

(1) Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA
(2) Mayo Clinic College of Medicine, Jacksonville, FL, USA
(3) Rush University Medical Center, Chicago, IL, USA
(4) UT Southwestern Medical Center, Dallas, TX, USA
(5) University of Iowa, Iowa City, IA, USA
(6) Saint Louis University, St. Louis, MO, USA
(7) Simon Fraser University, Burnaby, BC, Canada
(8) IEEM-Presbyterian Hospital of Dallas, Dallas, TX, USA
(9) Michigan State University , East Lansing, MI, USA
(10) Mayo Clinic College of Medicine, Rochester, MN, USA
(11) University of Western Sydney, Sydney, NSW, Australia
(12) NYU School of Medicine, New York, NY, USA
(13) Vanderbilt University, Nashville, TN, USA
(14) New York Medical College, Hawthorne, NY, USA
(15) Medical College of Wisconsin, Milwaukee, WI, USA

Christopher Gibbons
Email: cgibbons@bidmc.harvard.edu
Received: 23 September 2013
Accepted: 15 October 2013
Published online: 1 November 2013

Without Abstract

Treatment Advisory Statement from the Clinical Affairs Committee of the American Autonomic Society

Dysautonomias are a heterogeneous group of disorders with pathologic changes confined to the central nervous system, the peripheral nervous system or both, depending on the underlying condition [1–3]. Autonomic dysfunction, including postural tachycardia syndrome (POTS), Parkinson’s disease, multiple system atrophy and autonomic neuropathies are major public health problems with a large unmet clinical need [4, 5]. However, advances in therapies that have an immediate impact on quality of life and outcomes in patients with autonomic disorders have been limited.

Due to the limitations of many treatment options, particularly in disorders such as POTS, novel treatments have been considered. Into this therapeutic void a therapy for modulation of autonomic function is being advocated as a clinical treatment for autonomic dysfunction of all types. This therapy, described as transvascular autonomic modulation, utilizes an endovascular approach to dilate the thoracic venous system, resulting in mechanical stretching of the autonomic nerves and ‘resetting’ of the autonomic nervous system.

The scientific rationale for this procedure is not well described, nor does there appear to be any clear evidence supporting the use of this technique in a diverse group of autonomic disorders. This method reports mechanical disruption of baroreceptors in the venous system using trans-venous balloon inflation as a method to improve autonomic dysfunction. There are several major scientific concerns with this statement. First, there is no evidence of such venous baroreceptors. Second, patients with Parkinson’s disease have progressive autonomic nerve fiber dysfunction due to axon loss. There is no evidence, practical or theoretical, to suggest that inflating a balloon in a vein would halt or reverse the loss of nerve fibers secondary to alpha-synuclein deposition in a progressive neurodegenerative condition [6–8]. Promoting a single therapy to treat a group of diseases such as multiple sclerosis, postural tachycardia syndrome and Parkinson’s disease suggests a serious deviation from scientific understanding of disease pathophysiology [9].

We performed an exhaustive review of all available literature describing this procedure through a search of Pubmed and Google Scholar (covering articles published from 1 January 1970 to 9 January 2013). We did not find a single published report describing this procedure. A number of reports have been published describing a similar procedure that has been proposed for the treatment of chronic cerebrospinal venous insufficiency. Originally developed as a possible treatment for multiple sclerosis, this therapeutic approach currently has a negative FDA advisory statement because of complications that include stroke, blood clots, nerve damage and death [10].

We strongly encourage the development of novel approaches and therapeutic interventions for dysautonomia, but only when they are based on scientific rationale and supported by evidence of both safety and efficacy. At this stage, there are no data at all to support the clinical utility of transvascular autonomic modulation and there is no scientific rationale for the procedure. Until randomized blinded trials are completed to ensure adequate understanding of safety and efficacy, we cannot recommend transvascular modulation, or any other unproven surgical procedure, as a treatment for autonomic dysfunction.
 

Grace2U

Active Member
Thank you for your very informative article AnneVA. Your research is very much appreciated. Maybe this is not the procedure Merida was considering.... I came across it on YouTube. I hope I have not opened "a can of worms" by posting it.

One phrase in the article caught my interest for a very different reason.... I couldn't help but think of the difficulty doctors have had diagnosing CFS for decades "based on scientific rational". Am I right in that only relatively recently are "quantitative" indicators being discovered to diagnose CFS?

Thank you again AnneVA..... I hope everyone heeds this warning.
 

AnneVA

Active Member
Grace2U, I think we are vulnerable to trying anything that can help us or a loved one. If we don't toss things out to see if others know anything about it, how will we know there might be serious questions about it's validity or safety? Or if our "discovery" has a proven successful track record?
 

Grace2U

Active Member
"Been there...done that" with a Cervical Spinal Cord pain stimulator implant that went horribly awry . So true.... And I tend to be too trusting of some who have taken the hypocratic oath. Thank you again AnneVA!
 

Barliman

New Member
tilt table test can wipe you out for a few days. I just listened to a video that Cort has posted, one by Dr. Peter Rowe out of Johns Hopkins. His team has seen the aftermath of the TTT and is now giving a saline iv and finds that patients feel better than they did when they arrived for the test. Bad before, horrible during/after but the saline really helped them recover. My girl had the TTT done 4 years ago.
Less extreme testing is now possible- ie this Autonomic Spectral Analysis being used here:
Im actually starting this protocol myself- (for a chronic back pain syndrome with fatigue. Ive just started trans auricular Vagus Nerve Stimulation.
The practitioner involved suggests it may take 2-4 months of the full protocol in more severe cases.
 

Wayne

Well-Known Member
These researchers determined if this disordered electrical signaling of the heart - this reduced heart rate variability - during rest and during deep breathing was associated with pain. Several studies and some researchers and doctors including Dr. Julia Newton and Dr. Martinez-Levin believe autonomic nervous system problems play a key role in producing fatigue and pain in ME/CFS and FM and other diseases. (Newton believes they may underlie all fatigue and disorders). Vollmer's ME/CFS studies have linked reduced HRV to problems with cognition and sleep and we just saw evidence that vagus nerve stimulation can produce miracles in at least some people with fibromyalgia.
@Merida

Just a few comments:

1) Does the above necessarily imply that HRV is directly influenced by the Vagus Nerve? Since the VN goes through the heart, it seems it would probably plays a major role in HRV.

2) I've done daily coffee enemas for many years now, as they provide a good portion of my daily functionality. I long assumed it was primarily because they dramatically improved my detoxification (which I believe it does). But I've now come to believe I get more benefit from the stimulation of the VN that occurs during an enema (whether coffee or not). Apparently some people are so sensitive to enemas, that they produce all kinds of heart symptoms from the VN becoming overstimulated. For me, CEs calm down my nervous system, and reliably drains pain (often major) from my body.

3) I believe a serious whiplash injury as a teenager precipitated my developing ME/CFS. I believe a major reason for that was a serious impingement of my vagus nerve that occurred at the time of the accident. I did various chiropractic techniques over many decades, with NUCCA providing the best results. But those improvements were outdone by the results I got from doing a technique called Atlas Profilax, which I believe "repositioned" my atlas, and reduced a great deal of the impingement on my VN I had experienced since my original whiplash. I've posted fairly extensively over on PR about my Atlas Prfilax experience, including how it changed my facial structure, and improved many of my ME/CFS symptoms.

4) I did another "re-structuring" technique called nasal specific, also known as balloon sinuplasty, neuro-cranial restructuring--and other names. Here's a couple of links to this technique, which gives fairly extensive information. LINK 1 -- LINK 2 -- There's also a number of good youtube videos on the topic.

I have a friend who experienced a serious head injury, and over a period of several months, developed many symptoms of ME/CFS. She heard about this technique from a friend who had used it to completely eliminate seizures he'd experienced since a head injury he had as a child. After getting her own nasal specific done, her ME/CFS symptoms all went away. Though I have to say I haven't been in touch with her for many years.

5) From my experiences, I believe my head injury / whiplash led me to developing ME/CFS. The things that helped me the most since then are coffee enemas to regularly stimulate my vagus nerve, doing nasal specific every year or so, and my one-time Atlas Profilax treatment about 10 years ago. I think I would have a 0-1 functionality rating had I not discovered these techniques, as opposed to my current functionality of around 3. Removing all of the metal and root canals in my mouth was also a big factor for me.
 
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Barliman

New Member
Hi Wayne,

HRV is a reliable indicator of vagus activity- and it peaks when there is a balance between SNS and PNS activity
2) Rectal distension is a recognised way of increasing vagal tone- so is sticking your head in a bucket of Ice water.

3) I would be suspicious of the whiplash injury too, but I don't think the idea of impingement on the vagus holds up as the primary cause of symptoms related to atlas injuries. ( Though I personally think it might be a cause of profound bradycardia, hypopnea leading to Sudden Infant Death Syndrome).
The strongest explanation I have seen actually relates to disruption of the integration between vestibular and baroreceptor signals as a result of either direct brainstem neuronal shear, or of the sensory mismatch caused by the spasm in subocciptal muscles.

I have been undergoing a lot of neurorehab to correct my residual problems after I had Atlas Profilax which helped a lot but did not do everything.

For reference I am now following this protocol as closely as possible to deal with my chronic pain and ADHD/brain fog issues.
 

Merida

Well-Known Member
@Wayne
I have been off forum for quite a while. No energy beyond family comittments. Thanks for your comments above. Whiplash. Yes. Sometimes I think the initial trauma may even be at birth - pending if the individual has structural issues that put him/her at risk. My son was delivered with the help of suction - they pulled on his head. When they brought him to me I noticed that his jaw was retracted and tremoring.

Fortunately I was a stay at home Mom at that time and nursed him. This can be critical in jaw, palate, and cranial development. He did well until age 5 when he contracted EBV at preschool - 1986.

I did both NUCCA and tried Atlas Profilax last year. NUCCA helped, but the AP didn't seem to. Check out Jerry Hesch in Aurora, Colorado. ( physical therapist specializing in difficult cases) He has You Tube videos. One man reporting that he took his Father there for a 60 year old neck injury. And finally his Father reported his neck was better!

What a journey!
 

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