u/Squabsquabsquab

Helping my wife through her difficult health journey, see post history if curious. As we’ve chased down causes, diagnoses, and symptoms and ruled things in and out, we’re down to a handful of confirmed diagnoses, one of which is BVD. Last year she received prism lenses and did 3 months of weekly vision therapy. Both helped, then didn’t, then tons of other problems and symptoms reared up and focus switched away from BVD.

Recently things have settled down to a handful of diagnosed disorders with maybe one or two suspected still up in the air. We’re trying to chase down some of the more difficult to pinpoint symptoms to try and make sure we’re on the right treatment track.

So, curious to hear if anyone with BVD experiences severe daily fatigue, general malaise/not feeling well/feeling “poisoned,” and if anyone experiences the sensation of pressure in the head, face, bridge of nose, and/or ears? Not a squeezing pressure but an inward out pressure like those areas are being inflated like a balloon. These symptoms have been the hardest on her, as well as the hardest to attribute a cause to due to lack of comparative information and disorder overlap. Were these confirmed to be from BVD? What made them get better? What made them resolve? What was your experience like?

She recently got an updated prescription for her prisms and we’re talking about getting gung ho again about weekly in office vision therapy and daily vision work at home.

Any info is greatly appreciated, thank you!

Helping my wife navigate her intense medical nightmares that have really come to a head over this past year and a half / two years. Trying to parse out symptoms from the ever revolving list of diagnoses and suspected diagnoses she’s received so far, one of which is MCAS.

Does anyone with confirmed MCAS ever have internal pressure sensations in their head, face/bridge of nose, base of the skull, ears, and/or back of their head ? Not a squeezing pressure from the outside, but a pressure from the inside as if you’ve been hooked up to an air compressor. Like your head or brain wil l pop if you don’t get relief.

There’s no inflammation of her eye nerves and docs trialed Diamox with no benefit, so IIH has been ruled out. She’s been diagnosed with POTS, as well as cleared of any structural vascular compressions in her head and neck by some highly regarded specialists (though no dynamic imaging was ordered, just lying down when it comes to MRIs and CTs. She did have vascular ultrasound dynamic testing though). Her POTS is theorized to be driven by pelvic pooling with some hyperadrenergic symptoms when triggered.

Anyway, could this symptom be MCAS? Has anyone else experienced this? Has anyone successfully treated it? Any help is greatly appreciated, thank you!

My wife is really going through it right now and still new to this diagnosis. We’re trying to figure out what causes some of her symptoms, what might be making them worse, what might be completely unrelated. Any information / confirmation is greatly appreciated.

Does anyone get pressure in their head, face, neck, and/or ears? Like their head is being filled with air? Not all day every day, just here and there. If so, is any of it pulsatile in nature? Sort of throbbing to your heart beat?

Anyone have a feeling of malaise, like you’ve been poisoned? Not fatigue and not brain fog, but just a sort of “flu-y” feeling of being run down and icky, like one might feel if they were poisoned.

Does anyone have heightened anxiety around their symptoms? Hyper vigilance towards what they are feeling or what they might be about to feel? Anyone’s anxiety feed back in a loop and make symptoms worse? And their anxiety worse? Is this hyperadrenergic POTs? Is this part of the symptoms in general; an effect of adrenaline dumping? A normal response from the body and brain sensing palpitations and increased heart rate?

Did anyone’s baseline get worse with chronic stress and/or a traumatic event? Like things were managed and then you experienced something difficult or downright awful and things went downhill from there? Did dealing with and working through the trauma help your baseline and symptoms?

Did anyone’s symptoms get worse with perimenopause? Did they get worse or better with HRT? Do you know if your progesterone caused worse splanchnic pooling?

Does anyone get something like vibrations in their head? Like internal vibrations, like the feeling that your head is going side to side internally without your head actually moving?

Is anyone actually better in the morning? Like you wake up fine but after about an hour or so of being awake and sitting/standing then you start to have symptoms?

Is relief supposed to be immediate from salt and electrolytes? Like you drink and consume and you notice a difference within a set amount of time? Or is it cumulative and you load salt and fluids over days and days consistently and then your body starts to adjust? How do you know if you need more salt or more fluids or more electrolytes? Do you just increase until you notice a difference? Does timing matter? Like, better to consume more in the morning and repeat at the same time each day? Or does it not matter?

Again, any help would be greatly appreciated, thank you so much for reading and responding if you can!

I’m interested in hearing people’s examples of how their prism lens fittings went in terms of time it took to get used to them, time it took to feel better, symptoms and problems when first wearing them, whether or not you had to have the prisms changed during the process or the prescription changed during the process, etc. Trying to find out what is “normal” as compared to what my wife is experiencing trying to get used to her prisms. Thanks!

Does anyone else with confirmed aTOS (or any kind I guess for that matter) suffer from any type of non-spinning vertigo / “dizzy” floatiness / out-of-it drugged type feelings? Not a spinning sensation, more of a disequilibrium? What about general brain fog or processing slow down?

Does anyone also have pulsatile tinnitus?

Anyone have confirmed scalene / SCM involvement that also causes pain up where they connect near the ear?

Any info is appreciated, just trying to see if there is more going on than aTOS and trying to separate out symptoms if so.

Can anyone point me towards doctors who are capable of testing, ordering imaging, and diagnosing vascular compression syndromes or outflow problems in the head/neck/back of skull? I can’t find anything out there unless it’s a very specific vascular compression syndrome (May-Thurner, Nutcracker, etc). We need to rule out or in internal jugular vein compression and/or external jugular vein compression and/or vertebral venous plexus problems based on current symptoms. Anyone have any names to share or experiences to share?

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.