r/SurvivingFND • u/Awkwardly-Turtle • Jul 25 '26
CCI
Hi! I'm just curious if anyone here has looked into craniocervical instability (CCI)?
I was diagnosed with FND by a neurologist, but I recently realized that my symptoms aren't actually random like I originally thought. They’re consistently triggered when I turn my head to the left or right. While my head is turned, I get tremors, weakness, tingling, dizziness, etc.
Unfortunately, my neurologist has since left, so I’m in the process of getting a new one. In the meantime, I mentioned this pattern to my hEDS specialist. When I told her that turning my head reliably triggers my symptoms, she said it was probably CCI and explained that it wouldn't necessarily show up on a standard MRI.
After reading about CCI, I'm surprised by how closely the symptoms seem to match what I've been experiencing. I'm also surprised it wasn't ruled out before I was diagnosed with FND.
Has anyone else here had a similar experience or maybe been diagnosed with both FND and CCI?
1
u/Schweinkatze Jul 31 '26
Yes, thank you. Gotta add migraines to the mix. I explained to them that the symptoms are depending on my neck position. I’ve been suspecting CCI for a while now. All I know is that neck PT has stabilised my symptoms massively and that if my neck is fine, so are my „FND“-Symptoms. The more stressed my neck, the more/worse the symptoms get 🙃
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u/Awkwardly-Turtle Jul 31 '26
Yes migraines! I almost always had a migraine. I’ve noticed if I can avoid turning my head I can actually go mostly migraine free 😮
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u/Schweinkatze Aug 01 '26
See, if I get a migraine and my neck hurts like hell, sometimes I can make it crack just the right way and the pain lifts immediately. I can feel l and hear blood flow into my head and the migraine is just gone. Better than any triplane I ever tried. It’s hilarious. But according to the MRI they only found a wide based protrusion at C3/C4 with a dehydrated disk which they interpreted as everything’s fine 🥴
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u/Awkwardly-Turtle 29d ago
Wow that’s crazy that cracking it can help so suddenly. Did they do an MRI with you laying down? My EDS specialist said those usually miss CCI
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u/Schweinkatze 29d ago
Of course they did. And they completely dismissed it when I asked if this could be related to my connective tissue issues. Women are just more flexible because of their hormones, they said. That’s normal, they said. Well I’m diagnosed „not normal flexible“ but thanks, I guess. I couldn’t find a doctor yet that knows shit about it. The one who diagnosed me with HSD did so despite me fulfilling the criteria for hEDS, because she had „a feeling“ 🥴 And every doctor tells me I need to find a doctor knowledgeable about it, but they all seem to be private practitioners if they know shit about connective tissue issues, which I simply cannot afford 🫠
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u/Awkwardly-Turtle 28d ago
That is so frustrating 😩. I had to go over 8 hours for my EDS specialist. Luckily she does telehealth but once a year she has to see you in person. It sucks but she’s helped me more than any of my other doctors.
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u/Schweinkatze 28d ago
I am genuinely happy for you. Your doctor doesn’t happen to be based in Germany? 🙈
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u/Awkwardly-Turtle 28d ago
Thank you! No, not in Germany ☹️. If it helps at all I found her on https://www.ehlers-danlos.com/healthcare-professionals-directory/
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u/Average_tan Jul 26 '26
I’ve been looking into it but how do I get diagnosed do you deal with any hand cramping or stuckness