CCI Symptoms vs POTS

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Hi all!
I am going to get an upright mri to look for CCI... I was diagnosed with ME/CFS 5 years ago. Also have been diagnosed with EDS and hyperadrenergic POTS. I’m curious if CCI symptoms develop over time. I recently (6months) have developed more neurological symptoms like nonepileptic seizures, more numbness in my arms and legs in certain positions, and my headaches in the back of my head have come back.

for the past 4 months I have had absolutely terrible brain fog and tons of vertigo feelings in very specific positions. For example, turning my head to look out of the back of my car when reversing (taking my weekly drive to feel like I’m still a “normal” person even though cognitively I really shouldn’t) or over my shoulder. Are these possible CCI symptoms, and if not, could this just be new symptoms of my ME/POTS?
 
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Hi Marcus, I am from the US...located in Charlotte, NC. I was diagnosed from two different specialists using the Beighton mobility scale. I actually just came across something that said TMJ is also linked with CCI and EDS. I’ve had TMJ all my life and I’ve noticed my neck clicking like my jaw does. Have you heard of this? Very interested to see what the MRI says.
 

valentinelynx

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Yes, CCI symptoms can definitely develop over time. This is what led both @jeff_w (Jeff Wood) and @JenB (Jennifer Brea) to discover that in addition to ME/CFS they also had CCI, undergo fusion surgery and then find that their ME/CFS symptoms improved dramatically, thus inspiring many other ME/CFS patients to investigate spinal causes of their illness. POTS can be a symptom of CCI as well. To read the stories of Jeff and Jen, look at these sites:

Jeff Wood: The MEchanical Basis of ME/CFS
Jen Brea: CCI + Tethered cord series
 
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Wow, I have briefly heard of both their stories but had not seen the two links you shared until now. Thank you so much! It’s nice to know we are not alone and that even if my MRI does not come to show CCI or other connective tissue issues, we are discovering more and more about ME (and comorbidities), moving closer to answers and treatment options!
 

bensmith

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In my eyes these are typical symptoms for CCI especially if you can trigger them with certain movements or in certain positions.

How was your EDS diagnosed? From which country are you from?
Do youknow if releif instead of trigger might be cci. my sister suspects everyone in our family has eds as well.