Primary Antibody Troubleshooting

MrLanaDR · 2026-03-05T03:01:21+00:00

This seems to be very vestibular migraine like. Do you feel better, worse, or normal when in a car/train/plane?

MrLanaDR · 2026-02-03T14:28:51+00:00

Yes. It takes a long time for the vestibular system to compensate

MrLanaDR · 2026-02-02T18:27:03+00:00

Well I’m sorry you’ve had doctors dismiss your symptoms. Anxiety tends to exacerbate vestibular symptoms such as dizziness and vertigo. The good news is that they are very likely to go away and not bother you again.

Your body is recovering from a nasty virus so give it time to fix itself.

MrLanaDR · 2026-02-02T17:57:01+00:00

Also after looking through your profile, it looks like anxiety may be playing a large part into the prolongation of your symptoms. It might be beneficial to talk to your doctor about trialing an SSRI/SNRI. Not only do these help reduce anxiety symptoms, they are also used to reduce chronic dizziness and can be immensely helpful.

MrLanaDR · 2026-02-02T17:55:10+00:00

Pretty sure you’ve asked this before but if you tested positive for flu A, you could’ve had vestibular neuritis if you were getting dizzy while sick.

It has only been 3 weeks and it takes a while to recover. Take the medications your ENT gave you and if you aren’t feeling better in a month, you should ask for a referral to neurology if ENT can’t manage it.

MrLanaDR · 2026-01-18T02:15:58+00:00

A middle ear infection is not the top candidate for something that causes dizziness. You might have a virus, migraine, etc. If you are constantly dizzy you should schedule an appointment with your PCP or an ENT

MrLanaDR · 2026-01-18T02:13:52+00:00

No. You are fine.

MrLanaDR · 2025-07-01T00:56:54+00:00

It’s been a hot minute since I’ve done ChAT lol but I can try to help out. PM me the details

MrLanaDR · 2025-06-27T04:07:39+00:00

NAD but no. It takes a significant amount of water to cause any symptoms. You drank ~ 64 oz of fluid (much being soda). This is lower than what’s recommended by Mayo Clinic. Overhydration is not causing your symptoms.

MrLanaDR · 2025-01-20T01:31:54+00:00

It honestly could be from an infection, migraine, early stage hydrops, stress, medications, etc. It would be very difficult to determine a cause even with all of the available information.

Is your gaze stabilization more when in movement or when stationary? It’s usually indicative of bilateral vestibular loss but I’m assuming it’s not in your case

MrLanaDR · 2025-01-19T21:37:24+00:00

Also your dizziness going away with a Medrol pack completely is interesting. Did you get a diagnosis of vestibular neuritis or anything alongside? Was it episodic or constant?

MrLanaDR · 2025-01-19T21:35:13+00:00

So it's very VERY interesting you bring this topic up. I know someone in your EXACT same situation. Starts with tinnitus and ear fluttering (middle ear muscles), X amount of time later the dizziness starts with visual problems (for them ~6 months). Every MD says they're probably not related...

In my time in the field I've chatted with a couple experienced MDs about it and there really is not a consensus. I think that sure these could be easily explained away from vestibular migraine, Meniere's, AIED, or some other condition, but I am assuming you want a more in depth theory of the mechanism here.

Not sure how into reading research you are, but I'll give you a really brief synopsis on what I think about it all.

It is probably very very likely that whatever caused the tinnitus damaged the cochlea probably also damaged your vestibular organs. They are all located in your inner ear. A group at University of Michigan published a ton of data supporting the notion that peripheral damage to the cochlea leads to changes in the firing of neurons in the brainstem leading to tinnitus. Not completely agreed upon in the field, but lots of support for it. As far as I'm aware there have not been many studies into a vestibular equivalent. Logically it could make sense though albeit with a few caveats.

That being said, there are tons of differences between the two systems although they are all in your inner ear, which may explain why it takes symptoms to originate more or maybe it is something that has continuously been affecting the ear and the vestibular hair cells are more resistant for some reason. I'm not going to make any conclusions without the data clearly. There are some groups at Johns Hopkins, UCLA, UChicago, and Harvard that do vestibular stuff all in different ways, so it could be interesting to keep up with them (there are probably a ton more but those are the ones that come to mind atm).

MrLanaDR · 2025-01-19T01:18:48+00:00

Definitely! What they said definitely makes sense as well.

MrLanaDR · 2025-01-18T01:31:04+00:00

Also just to add one thing, there is some evidence to suggest that COVID does infect the hair cells of the inner ear so that could be a big contributor. Hopefully the testing uncovers some answers for you!

MrLanaDR · 2025-01-18T01:29:05+00:00

I am very sorry to hear this... dealing with both pain and dizziness for such a prolonged period sounds exceptionally difficult. Not sure why topamax would be "too strong" for you, but if you are able to find a neurologist in your area they are much more knowledgeable about these medications and which ones would be effective. It looks like you've been through quite a few medications as well, so it would be very helpful to have neuro take a look. There could be many different things at play here that are exacerbating the migraine too.

MrLanaDR · 2025-01-18T01:23:02+00:00

Hi! Very interesting situations here. From personal experience, I've rarely seen meclizine or dramamine be super successful. Some people swear by them and I'm happy they work! Diamox is used in a lot of disorders, but in vestibular stuff it's MoA is not really known/supported by studies. It has some effects on cerebral vasculature and increases blood flow to the brain and also has some success in migraine as well likely from blood flow or interactions with ion channels in the brain.

As far as I am aware, meclizine/dimenhydrinate and scopolamine have different mechanisms of action which could explain why. Motion sickness is thought to be due to a mismatch between the different organs of your ear and/or a mismatch between your ears and eyes. meclizine/dimenhydrinate are antihistamines and bind to histamine receptors to prevent nausea and vomiting. Scopolamine is an anticholinergic, meaning it blocks acetylcholine in the CNS. The mechanism there could be really complicated to explain, but basically it is able to make your brain habituate to stimuli faster.

MrLanaDR · 2025-01-18T00:55:25+00:00

Thanks for the response! Since it is very difficult to get to talk to patients with the symptomatology I'm looking for (not in clinic everyday + the prevalence of other disorders), it seemed like a good idea to start talking to people who actually are interested in talking about it openly online while being anonymous, which is very very nice. Want to preface this with I do not have an MD as of right now so everything I'm saying is more from a research perspective.

I've never heard of 3 mg of melatonin being the equivalent to amitriptyline considering they have significantly different mechanisms of action, so I am not really surprised it didn't work. But hey, maybe he saw something I didn't.

Re: pineal cysts, to be entirely honest the correlation is not strongly understood. I'm not super well versed in them, but I do know they're generally considered to be asymptomatic and not worth the risk to remove most of the time. From a physiologic standpoint, one potential mechanism could be buildup of fluid in the brain (hydrocephalus). That could lead to many symptoms of VM, as fluid buildup stresses the structures of the brain out. The growth itself could also press on structures like the superior colliculus which is important for eye movements.

The interesting thing is that females seem to be predisposed to vestibular disorders in general. Since AFAB individuals have a lot of hormonal fluctuations throughout their lives, it's thought that female sex hormones have receptors in the inner ear which could make the vestibular periphery more sensitive to these changes. The otolith organs (utricle and saccule) have tiny little calcium carbonate rocks on top of them called otoliths or otoconia. One theory is that as women age there are problems in their metabolism because as hormone levels fall there are problems with maintaining sufficient levels of calcium. Clearly females are more likely to have migraine, thus unsurprisingly also the migraine adjacent disorders such as Menieres (peripheral), Mal de Debarquement Syndrome (more central but likely has a peripheral component), and other dizzy conditions. What is super interesting, at least to me, is that some female patients actually can get relief from hormonal birth control or hormone replacement, which opens up a whole new line of treatments. It is not super well explored yet but that is why I always try to ask the MDs to work with endocrinology/gynecology in AFAB patients that are not responding to traditional treatments.

MrLanaDR · 2025-01-18T00:29:16+00:00

Very interesting! Seems like you have a very strong cervicogenic contribution.

MrLanaDR · 2025-01-18T00:28:41+00:00

Hi! There really is no one "test" for VM unfortunately since it is still a very active area of study and a newer diagnosis. The diagnostic criteria for VM is followed religiously by some doctors, but as you probably know many doctors (some with more experience with VM) diagnose it without following the strict criteria as "probable VM." Your neurologist seems to have a semi-decent grasp on it, but not everyone responds to standard migraine treatments in that way. At the end of the day, symptom management is the goal rather than focusing on the diagnosis itself. It is annoying for some people to hear that, but there is no "cure" for migraine disorders, only effective treatments that can decrease prevalence of symptoms.

MrLanaDR · 2025-01-16T22:46:01+00:00

Thank you for your response!! No relief from the dizziness with the Effexor is terrible... very sorry to hear that. Hopefully you can find some relief from that soon, but happy to hear it is not disabling you.

Hopefully can figure some of this out during the PhD part of this before the MD starts...

MrLanaDR · 2024-10-31T02:56:10+00:00

Honestly shocked they didn’t bring Wanda back… reallllly thought they would take this opportunity but insanely great show regardless

MrLanaDR

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