Head and Neck Concerns in EDS/HSD

I haven’t been diagnosed with non of this so far but my MRI shows Magna Cisterna or Arachnoid Cyst that was discovered when my vague symptoms started 2017. I had blurry vision, shining spots, imbalances, dizziness, sensory issues, uncontrollable episode of swallowing and the HR alterations. No body has kept measuring it but there’s no significant tonsil ectopia in my last brain MRI. However, I’m now waiting for a vascular surgeon from CT for his opinion specially for the abdominal pain to check any compression etc. I only have 3 X rays standing done by my chiropractor when I tried to see what could help but I never got to start treatment since I got deteriorated or worse (ER in out admission) with symptoms that are attributed so far with HSD and POTS. I do see in my X Ray some tilting but I also had severe scoliosis surgery at 17yo so I dunno if this is all connected. I’m still working on the etiology of my situation. Thanks for the valuable information. Blessings and healing for all 🙏🏻❤️

Here’s a picture of me attempting to illustrate my situation back in 2017. I’m no artist so excuse my anatomical inaccuracy lol 😆

I would like to see prolotherapy added to possible treatments list. While it is still considered an alternative treatment. prolotherapy can tighten ligaments that have become stretched, the ligaments that hold joints in place. I am not a practitioner of any kind but know that tightening cervical joints 4-7 stopped my night awakenings when joint movement was needed to allow full blood flow to return. Cervical 1 and 2 are actually made up mainly of ligament, but they are difficult to treat. A Digital Motion Xray can determine which cervical joints are hypermobile and which extend the most. A chin to the chest works as a one-time realignment.
Finally, prolotherapy is a regenerative medicine technique. By poking the ligament with a needle and sugar water, the internal healing system is turned on. Notably it can take 10 days for a fix.

I'm diagnosed with hEDS, uncertain significance cEDS, mEDS, TAAD syndrome, and Loeys-Deitz. I suffer from unbelievable amount of symptoms such as Autonomic Small Fiber Neuropathy, POTS Syndrome, Positional migraines, silent migraines w/ beautiful auras etc. I had a stroke from a tear in the Vertebrobasilar artery that over clotted due to a blood clotting disorder that was not caused by trauma. Making everything worst by losing strength in my ligaments resulting multi-direction partial shoulder dislocation doing anything, unstable spine, and inability to turn my head all the way to one side. After getting covid (I was a long hauler before covid long hauler existed:) made a crappy problem even worst.
I added x-ray photos of my neck where the radio findings was: Straightening of the normal cervical lordosis, may be positional. No findings of dynamic instability on flexion-extension views. The vertebral body heights are maintained. The disc heights are preserved. No significant osteophytosis or facet arthropathy. My response was I disagreed with the findings while acknowledging I don't know anything about x-rays just what I feel. Judge for yourself but radio still wins. lol When I was younger being hyper mobile was fun it was my super power but now that I older I keep saying "Take it back"

edsasfnf5....I too enjoyed the 'tricks' I could do and had no trouble until my old age when my flexibility began to cause problems. The latest is my jaw which creaks when chewing! I would love to have someone do some scientific comparisons of changes in the components of cell making that could point us toward supplements. Collagen seems to help.
Re Xrays ... Chiropractors have something called a digital motion Xray that measures the hyper-extensions of various joints. It can be read my certified radiologists too. My cervical spinal DM Xray showed that Cervical 4 was the worst stretcher, so I took that to a Regenerative Medicine doctor who tightened the ligaments of Cervicals 4-7. Today, I no longer have the issue with an occasional slow flow of blood to my brain. A chin to the chest helps too.... like a palace guard posture!
Regenerative Medicine Drs. do prolotherapy, a procedure that tightens stretched out, "lax", ligaments. A treatment on the ligaments attached to my SI Joint allows me to walk properly again and the leg stopped subluxing when I moved it a certain way. The Dr. said I may need to have it done again, as the joint can still hyperextends, but it has been 5 years so far.
Hope you can find some answers too

@rjmtwit...I have a family member that has the same jaw issue. I read articles of them being able to make a mouse hypermobile but have not released details on the find as of yet still a ways. The way I understood what they found is that it is a production problem that's why they couldn't find a gene but will have to wait for the research release. Cortney Gensemer, a postdoctoral scholar, is one of the researchers that may be able to answer your question in the near future. Also there is some other researchers that are working on the same area. If you go to the Statnews website there is an article on 12/12/2022 ehlers-danlos-syndrome-patients-turned-researchers Titled "Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes." Even though they are working on EDS there research would also answer other connective tissue issues across the board. (My opinion)

Thanks for the chiro info will definitely ask about the digital motion X-ray. I have vascular connective tissue issues on top of hypermobile along with an anesthesia allergy and a blood clotting disorder. (Mouth full I know) So I'm not cleared for any surgeries unless it is a threat to do nothing. I'm to the point I will try anything to improve but I avoid doing anything on maybes. So thank you! for sharing your experience that makes me feel more comfortable looking for a Regen dr and getting my ligaments tightened. It would me great if my ligaments in my neck are tighten and it stops my positional migraines as well as stop my imbalance. 🙂

@edsasfnf5, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes https://www.statnews.com/2022/12/12/ehlers-danlos-syndrome-patients-turned-researchers/

@colleenyoung Thank you for posting the URL. I believe keeping up with new research is very important to future treatments and understanding so thank you for allowing me to share. But I do completely understand about deterring spammers and keeping the community safe. Thank you!

Samantha, CCI ... craniocervical instability can cause all kinds of symptoms but I would like to add a bit about diagnosing and treating CCI that are still part of 'complementary' medicine, but have worked for me. First, the digital motion Xray that can be done at some chiropractors offices and read by licensed radiologists. They are a great diagnostic technique. My own SI Joint hypermobility extended up my spine to affect the cervical joints. The DMX can measure the hyperextension of each joint. For me joint 4 showed the worse extension, although others did measure excess mobility. My Dr. elected to do prolotherapy on the ligaments in 4-7. It worked and I no longer feel the blood flow into my brain diminished and the awful feelings that causes. Nor do I have to "do the chin thing". That means that by moving my neck into a position the palace guards stand in. A chin to an up straight neck can realign those cervical joints.
Hypermobile joints probably cannot be completely fixed, but prolotherapy on the internal and connecting ligaments of the joints will hold them in place and make living life a whole lot better.

Hi Lidiana,

Your symptoms sound very much like mine. I spent years trying to get properly diagnosed and I finally did at 51 yo. So grateful. I’m feeling so much better now. So there’s light at the end of the tunnel.

I have hEDS (Hypermobile Ehlers Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). They go hand in hand often enough and that’s the case with me.

First step would be to get to a cardiologist, who’ll do a tilt table test, an EKG, and some other tests. That’ll and questions you answer will easily help determine POTS or not. They can also help diagnose hEDS, but you have to make sure they understand the symptoms. They should.

I’m complementing my doctor’s treatment plan (prescription meds, compression garments , supplements), healthy eating (dairy free, gluten free, whole foods), with alternative treatments. I’ve recently been addressing a possible chronic Epstein Barr viral infection. EBV’s been discussed as being a culprit for triggering POTS and the associated dysautonomic symptoms. I chose acupuncture and traditional Chinese medicine. Specifically, my practitioner suggested Lightning Pearls (Su He Tang Jiawei II; Classical Pearls brand). The extreme fatigue I’ve felt over the last few years has FINALLY lifted!!!

So good luck, feel better, stay the course, and please reach out with any questions. You have a lot of support. Get ready to feel well.

I’m looking for peer reviewed research/studies/clinical literature regarding how hEDS can weaken bones OR the joints around the bone plates in the skull. 5 years I’ve had slight rocking back & forth of the right side temporal bone. Only I could hear the shifting, so was dismissed by the ever popular “that’s impossible” & “what you think is happening isn’t what’s happening”. It’s now evolved to the point of snapping so violently that it rattles my teeth, shakes my eyes & the sound is clearly audible outside of my body to anyone else in the room. When it snaps, it also pops my inner ear bone, sending pain thru my inner ear, down my jaw joint, down the side of my neck adjacent to my throat. On really bad days, when the bone is micro snapping all day on top of the more violent macro snapping that’s audible outside my body, the sharp constant pain in my inner ear is accompanied by the feeling of having cotton stuffed in my ear. It also snaps against surrounding plate joints, which puts force against them, causing shooting pains into my right eye when I bend over & a myriad of different headaches WHEN THE TEMPORAL BONE ROCKS OR SNAPS. This isn’t pain that exists unless the bone is moving. Meaning, none of these symptoms exist outside of this phenomenon; to blamed on other sources of pain. When I stay bedridden to keep this bone stable, these symptoms disappear. But, even rolling over can cause the slightest rocking or popping of the temporal bone, so this isn’t a sustainable “management of symptoms” or “cure”. It causes severe occipital migraines w/tachycardia, autonomic dysfunction (I stop breathing in my sleep w/the worst migraine episodes), weird changes to my vision; that feel like I’m not getting blood or enough oxygen to my brain. The only cure is for me to purposely snap it until it gets aligned enough that the migraine instantly disappears. Like a light switch being turned off. The snap of a finger! I can’t get any dr to believe me even though they can hear the very loud snapping of the temporal bone, behind my right ear. Not only is it excruciatingly painful (it feels like a broken bone, the same sort of deep, sharp ache around the outline of the bone joints), I’m also terrified that this bone is gonna get loose enough to irrevocably harm me, whether or not that’s “possible” in the general population. I mean, this is my skull. This can’t be good. Drs keep treating my cervical spine for the pain, (I just had a diagnostic procedure of a medial C2-C5 anesthetic block yesterday which actually triggered a migraine, triggered left side occipital & neck pain I DIDN’T have before & I felt 0 effects from the injection; might as well have been water). This does absolutely nothing to resolve the myriad symptoms that it’s causing, nor does it resolve the pain in the temporal bone joints & inner ear. They simply won’t accept it. I’m in desperate need of any credible sources regarding issues w/this specific skull bone; primarily in hEDS (my dx), but even in the general pop would be helpful. I’m stuck in a small town where absolutely no doctors know anything about this disease. I’m going into my 50s & I gotta say, it’s an extremely exhausting & hopeless situation. Reaching out to strangers publicly is my last straw. Thank you for any sources in advance.