I met with Dr. Hepworth on Monday and he told me to research MSAC(Mast Cell Activation Syndrome) and its correlation with Eagles. Are there any good threads on here or does anyone know of good reading material that will shed some light on the relationship between the two?
Also if anyone knows/suspects any link between the MSAC and arthritis, please chime in too. Might be all three related…
That’s interesting, but it’s not something which seems to have come up very often from what I recall on here…
Yeah, he said it would explain most of my autoimmune, skin and digestive type symptoms. I’m going to have to ask him for some suggestions for reading material. It’s heard enough finding information on ES but when you Google ES and another condition nothing comes up
I emailed the doctor and asked if he had any suggested websites or reading material. I’ll post his response.
Agreed, @stuuke. I did a quick Google search & couldn’t find the combo of ES & MSAC at all.
I know a little bit about this. I went to see an atlas orthogonal chiropractor after extensively research MCAS. One contributor is the C1/Atlas being out of correct alignment and therefore pinching or compressing the vagus nerve, which is the command center for all sympathetic hyper-responses thru out many of the body systems–heart, lungs, gut, and many others like my never ending migraines. I found out about ES by accident after getting the CT scan this chiro asked for and him turning it into 3d images, consulting another dr. when his Atlas adjustment didn’t do much for my migraines or create the shift he thought I might get, and them seeing the long styloid calcifications. My CT scan showed a clear compression of what appears to be the carotid sheath which includes the vagus, carotid artery and internal jugular vein. I’ve spent many months researching this and whether it would be considered ‘vascular’ ES since I don’t have many of the normal face and jaw pain symptoms others have, but many systemic issues including those related to MCAS and vagus nerve dysfunctional. It’s no accident that 18 years ago I started having weird pain and exhaustion in my back when I moved back to Hawaii, where mold is the number 1 trigger for MCAS, and then my migraines started. An internist told me the weird pain in my back (lungs) and gut and exhaustion/hunger was the vagus nerve but she had no clue what to do about it, neither has any doctor I’ve ever told about it since. The book, ‘Accessing the Healing Power of the Vagus Nerve’ is a must read as he goes into a lot of the anatomy with simple exercises at the back of the book if you don’t want to read about all the cranial nerve stuff all throughout. If the C1 is pinching stuff AND there’s the calcified styloids, a LOT of stuff/cranial nerves, arteries, veins, etc, is getting pinched. Most doctors won’t know anything about MCAS. These connections between the vagus nerve dysfunction, mold, C1/Atlas and MCAS are known only to SOME functional medicine folks who aren’t doing research, although some scan the research lit to find some connections. check out mastcell360.com. It will lead to a lot of rabbit holes but it did lead me to the connection to the Atlas, which lead to the CT scan, which led to the seeing the whole system being pinched between the Atlas and styloid. Still can’t get a doctor to get it but something’s gotta give. I’m getting Atlas orthogonal adjustments but no progress yet. If the styloid is also a big culprit, AO might not help much. Or it could be b/c I’ve had a lot of neck/head injuries since 17 y.o. and the ligaments and tendons and muscles are used to the C1 being so out of whack the adjustments won’t hold. Sorry if it’s hard to understand. I am also very exhausted all the time so hard to focus for too long. Hope that helps.
I tried atlas adjustment for about 4 or 5 months. I didn’t notice much of a difference but I don’t think I can get any kind of stability until my dystonia is gone. That’s just my personal opinion and not from any medical providers. I thought I’d give it another try after my surgery. I’ll check out the book. Thanks for the recommendation and the link.
Like you, I’ve had some head/neck injuries over the years & feel convinced that they are the basis of my ES (though I’ve had two surgeries, one for each side, that have left me mostly symptom-free). I learned in an orthopedic Pilates instruction course that when our bones are stressed by pressure from surrounding muscles/fascia/other bones, the brain tells the body to “reinforce” the stressed bones by laying down more calcium & making them thicker/stronger.
When a person has a head/neck injury (I think all head injuries involve the neck at some level), the styloids end up being the target. Though they are relatively small & seemingly insignificant, they play role in head/neck stability because of the muscles/other soft tissues that attach to them. When they elongate, thicken, twist, curve unnaturally, in an effort to support what the brain thinks is weak, then they can potentially create worse problems rather than helping the situation.
You might ask, then, how do we get along w/o the styloids as an anchor point for the muscles, etc., once the styloids/stylohyoid ligaments have been removed? I don’t have an answer for that except that their role is minor, & the body is able to compensate when they’re gone.
I’m not a doctor but based on what you’ve said about your symptoms & the potential cause(s), it does seem like you have vascular ES possibly w/ IJV compression & IIH which is the cause of your migraines. I’m so sorry you’re in a country w/o support for ES. I can’t imagine how discouraging that must be for you. I am impressed by the research you’ve done & what you’ve learned so you can better advocate for yourself when you do see someone who can help you. I can imagine the AO adjustments might be useful in shifting C-1 which could potentially take pressure off of a compressed IJV & allow it to re-open or at least open enough to stop symptoms caused by compression.
I truly hope you’re able to find someone closer to you soon who is knowledgeable about ES as your symptoms are pretty severe.
Thanks Isaiah, That is very helpful. I’ve never run across the IIH before and just looked it up. Definitely looks like it but so does a lot of other things, ha. But they are all related I think. I did find a FB group in France for ES recently AND 2 people on it recommended a doctor not far from me. He’s the 2nd ENT I am seeing b/c the first one just poo-pooed my doctor’s finding with the images and referred me for an MRI which showed nothing useful and to a neurologist. I have been turned down by vascular specialist and neurologists 4 times now when the referral letter from a doctor mentions ES so I am pretty discouraged with that route. The first ENT said his patients only had a 50/50 chance of getting better with surgery and that’s not enough for me to take that risk. So this other ENT I see tomorrow is my last hope. Otherwise, I will have to go out of France or very far away. I need a truly proficient dr. who can truly investigate what is going on and whether surgery will really benefit me.
That’s good to know your AO didn’t benefit you either. I was really discouraged and keep thinking it’s just me knocking it out every time I flip my hair or something. Good luck and let me know what you discover. The MCAS is quite significant and I’m also working on rebooting my nervous system b/c it’s been stuck in a ‘cell danger response’ mode from all this over the years–with that and mold.
That’s good that you’ve found some support in France, & I hope this ENT is more helpful. Will be thinking of you & let us know how you get on!
I’m really glad to know you have one last ENT to try especially one who’s close to you. Please let us know how your appt goes.
Thanks! Sadly the person I got to help me communicate about the appointment had a miscommunication and the appointment isn’t until MAY 19th. What a bummer!
Oh no, a pain…
So sorry for the delay.
I have been communicating with my hand surgeon who is an expert in Ehlers Danlos hypermobility and asked this very same question. My daughter has the same as well as POTS. She started passing out at age 7 and I was told it was vaso-vagal response back then. She has suspected MCAS also. IBS and bowel issues seem to go along with EDS and/or POTS. So does osteoarthritis and TMJ which I have along with CCI issues. Ive personally have long standing GI issues and whiplash at a young age. More recently I have reached out to more alternative medicine docs as it appears to be out of many doc’s realm. Had food sensitivity testing and other GI testing. My daughter has recently now been diagnosed with SIBO. (Small intestinal bacterial overgrowth) often in MCAS patients. I personally think alot of this may be related to autoimmune conditions.The gut and autoimmune issues are very connected. I will now go off into the realm of major diet changes and antibiotic therapy to treat the SIBO.
Even though I have had bilateral ES surgery, I am now having major ear issues including mild sudden hearing loss and ear reflex issues and at times it is positional. I can feel my neck ligaments tugging on my ears at times.I do not believe my ES surgery has worsened my CCI. Which has come first is a big question. I do have a strong suspicion the neck instability is affecting the ear issues.
I’m really sorry to know about your ear issues. We always hope ES surgery will permanently resolve all related (or what we assume to be related) symptoms. It’s so disappointing when new symptoms come up or old ones recur some time after we’re healed from the surgery. I hope you’re able to determine the cause so the symptoms can be resolved not just masked w/ meds.
I am a proponent of alternative medicine when western medicine fails. I’ve found, all too often, that western med docs are quick to Rx meds w/o looking for the cause of the problem so the root of the issue can be dug out & true healing can occur. That’s where a good, qualified/certified alt med doc is a benefit. It’s unfortunate that alternative med docs often are expensive & health insurance frequently won’t help cover the cost.
Thanks Isaiah. Ill eventually get to the bottom of some of the ear issues. A new dentist believe the tooth extraction I had caused some sort of trauma which is what I have suspected. I think the oral surgeon tourqued on my neck and jaw that started a new cascade of issues.
Luckily we have found an excellent naturopath that also teaches at an alternative medicine college and medicaid and medicare is accepted and is covered.
I always knew that ES surgery wasn’t going to solve all my ailments. I just watched a very interesting EDS webinar from the doc that runs Caring Medical in FLA. He’s real big on prolo-therapy for ligament laxity which I have tried before. He is starting to see some patients with Eagles now and has some info on his website about Eagles. He spoke alot about the Vagus nerve and how posture and cervical instability can impact the vagus nerve. Some interesting theories that have some value.
I would be very careful.