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Head and Neck Concerns in EDS/HSD 4 days ago | By Samantha Campbell (@samanthacmaa)
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@lidiana

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 😆

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Replies to "I haven’t been diagnosed with non of this so far but my MRI shows Magna Cisterna..."
dtownconnect | @dtownconnect | Apr 22, 2023

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.

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