Thanks for all of your answers!
I don’t have Chiari but cranio-cervical instability and a cervical-spine that looks like I had a whiplash without having it.
I have blocked CSF flow and a pretty long Syringomyelia in my spinal cord as a result.Some symptoms (only Syringomyelia, not EDS-related):
headaches, chronic pain (in addition to my EDS pain), double vision, pressure sensation, whooshing tinnitus with heartbeat, a lot of passing out,
weakness, fatigue, lameness in my legs most of the time (wheelchair), gag reflex problems, throat swelling sensation, vertigo, brain fog, speech problems, POTS.
Hi Samuel,
I have Cranio-cervical instability too but no syrinx, following a bad backwards fall onto a stone ledge and I have many symptoms similar to yours. Some are caused by raised intracranial pressure, some caused by the cranio-cervical instability which, when my head is pushed forwards, allows my odontoid to irritate my brainstem. Symptoms we have in common are:-
Headaches, chronic pain, intermittent double vision, tinnitus (both pulsing/throbbing on a morning and constant high-pitched for the rest of the day), weakness, fatigue, partial lameness (though this has improved), intermittent gag reflex problems, throat swelling sensation, brain fog, POTS and no doubt you have many more symptoms, as I do. I too am in a wheelchair, so I can certainly empathise with your suffering.
I would like to give you a piece of advice regarding the throat swelling sensation, you may not be the same as me but if you are, this piece of information will help – avoid moving your head from left to right whilst looking down (in flexion) for instance, whilst flicking through a magazine. In fact avoid putting your head into flexion at all, if you can, as this can trigger or worsen other symptoms.
Are you wearing a cervical collar, if so, what type ? A Philadelphia Cervical collar reduced my pain greatly overnight (particularly the excruciating all over body pain that used to wake me several times a night). The severe occipital pain, the nagging neck pain and shoulder pain eventually went too, so if you’re not in one already, it’s something you should seriously consider.
I also suggest you have your Vitamin D levels checked, for if you are deficient, this too can cause a level of chronic pain.
Regards
Barbara
(UK)