u/Squabsquabsquab

My wife is 48, perimenopausal, approx 5’4”, approx 150 lbs.

For the past 5 or 6 years she has had on again off again symptoms such as non spinning vertigo/drunkeness feelings, fatigue, presyncope, neck pain and neuralgia, occipital neuralgia, tinnitus, pulsatile tinnitus, brain fog, slow cognition and memory recall. Over this time it has seemed to increase in severity and frequency. Current symptoms and pattern I’ll share below.

All standard MRIs, CTs, CTAs, and x-rays show nothing, all normal except some minor degenerative disc issues, some straightening of the lordosis, some cervical stenosis, nothing noteworthy to the local neurosurgeon. Her labs are normal outside of elevated RBC, hematocrit, and hemoglobin, suspected sleep apnea. Recently she was diagnosed with hashimotos with functioning thyroid, hypermobility / suspected hEDS (9 out of 9), SN Sjögren’s from low positive lip biopsy, and dynamic testing is showing arterial thoracic outlet syndrome.

As her symptoms were seemingly getting worse and worse, her neurologist theorized that her hypertonic neck muscles were squeezing her nerves, causing symptoms. He treated her with 155 units of Botox in the neck muscles and migraine protocol. Things did not improve and possibly got worse. He stated that we wouldn’t know if it was successful without doing another round 3 months later. This made the symptoms much, much worse. Botox doesn’t wear off until end of May through middle of June depending on what you read about Botox.

Her symptoms currently present like this: wake up in the morning almost completely symptom free, feeling great. Within 45 minutes to an hour of being upright (sitting up or up and walking around), the symptoms come back: floating/spacey/non spinning “out of it” feeling like drunk or drugged, neck pain, neuralgia, tinnitus, ear pressure, ear fullness, back of head pressure, facial pressure, head feels sort of “heavy,” pulsatile tinnitus, back of head/base of skull pulsating sensation. Sound and light sensitivity, sounds are much louder to her. Sometimes there’s facial flushing. Never any nausea or vomiting. Never a classic headache or thunderclap type headache, just pressure. There is usually anxiety involved but it seems almost like a triggered reaction and not a blanket feeling, if that makes sense.

Most of the time if she lays back down for a couple hours she starts to feel better. Sometimes it’s so bad that doesn’t happen. Sometimes a hard cervical collar brings some relief of some symptoms. Sometimes not. Sometimes it seems like hydration has as effect. Sometimes it seems caloric intake or protein intake has an effect. But this could be anecdotal coincidence. Typically by the evening she is feeling somewhat better but fatigued and still symptomatic just not as bad.

Symptoms, when occurring, can be made worse with head turning, riding in a car, being upright, and looking up or down.

Does this sound like anything diagnosable? Familiar in any way? She is on short term disability now and it’s taken her life away. Our kids are really missing their mom and it’s really hard on everyone especially her and we have no answers.

People have suggested autoimmune flaring, MCAS and POTs with hEDS flaring, CSF leak, CCI, Vertebrobasilar Insufficiency or some type of subclavian steal syndrome or something happening with venous drainage and CSF drainage, hypertonic scalenes squeezing nerves and vasculature. But it seems like none of these can explain **all** the symptoms. And we don’t have any doctors nearby who are specialists and/or familiar with these enough to make a diagnosis or send her on a path to find out.

Currently taking Plaquinel, Aimovig, estradiol, progesterone, LDN, gabapentin, and just started taking H1 and H2s. Supplements are collagen, b complex, heme iron, glucosamine chondroitin, and calcium.

Any thoughts are greatly appreciated.

EDIT: Vestibular testing all normal. One MRI showed “bilateral lateral semicircular canal dysplasia with no CP angle mass.” She had a convergence disorder that is being corrected with prism lenses but still isn’t 100% corrected yet.

Recent diagnosis for my wife, and we’re trying to sort things out as she seems to have symptom crossover with some other possible problems. I wanted to find out if anyone has or had similar symptoms and patters to hers that are 100% caused by hypermobility, specifically in the neck.

She wakes up feeling completely fine. 30 to 45 minutes into being upright, standing or sitting, the symptoms start. Occipital neuralgia, some facial neuralgia, brain fog, tinnitus, head in a fishbowl feeling, and pressure feelings in the ears, eyes, and face. Confusion at times, like floaty dissociation, facial neuralgia at times, neck pain, shoulder pain, upper back pain, and a feeling of a heavy “rolly” head. These change in severity but do not go away unless she lays down flat for an extended period of time, often based on how long she was up and what activities she’s done. It may take an hour or it may take 4 for her to feel some symptom relief. She gets up, and the same pattern starts again.

A neurologist floated the idea of ligament laxity in the neck, causing the skull to settle down onto the structures below it like nerves and spinal cord etc. (They have also floated the idea of a CSF leak which we are also researching). This neurologist is in over his head and unfamiliar and isn’t really helpful beyond tossing out ideas.

So I’m asking if anyone else presented like that and had these issues and symptoms. If so, what were they and what was it like. What helped and what made it go away. Did any of it totally disappear? Who and how did it get diagnosed as a hypermobility issue for sure and not something else?

Any help is greatly greatly appreciated.