u/Hopeful_Pea_3275

My MD started off bilateral in early 2023. I was 27 years old. They think it's autoimmune Meniere's as I have an autoimmune disease too.

My dad's started off bilateral when he was early 30s. He is now nearly completely deaf and has been for awhile.

My Ear doctor told me today that bilateral involvement with eventual profound hearing loss is usually the case for autoimmune Meniere's. I currently do not have hearing loss, though it sometimes fluctuates.

I know no one can predict the future and everyone is different. But im scared I could follow the same path as my father.

So. Did it start bilateral for anyone when they were young & it not turn into severe hearing loss?

I have moderate-severe axial PsA. I also have other conditions that can cause dizziness and more.

My upper back & neck are so tight, its killing me. Because of this pain & the dizziness, I often slouch. This makes it 10x worse it seems. I can barely turn my neck to the side, it's been like this for months.

I feel like this pain is primarily muscular, strongly influenced by my PsA.

Is there any relief to be had? I cannot take muscle relaxers as they make me too drowsy. I am on a Biologic, Cimzia.

I have two variants: MYBPC3 (pathogenic) and VCL (uncertain).

Ive had multiple echos recently, ever since the gene testing. One was a valsalva echo which showed no obstruction.

I have left ventricular concentric hypertrophy of 1.2cm and a dilated left atrium of 4.0cm

Im waiting on an MRI to see if there was any signs of scarring etc. I was told 1.3cm would be diagnostic on echo, but that MRI is becoming the gold standard for diagnosis. Has anyone here been borderline on echo but the HCM was revealed on MRI?

I am fairly symptomatic. I do think I also have POTS, but have been told the HCM can mimic POTS. So idk. I have my MRI late next month, so I guess we'll see if I truly have HCM.

Ive been using my cpap for a year now. I have not used it everyday of this past year. I have used it nearly everyday for the past 5-6 months. I did not feel anymore rested.

I have severe sleep apnea, primarily hypopneas while on my back. I own a mattress with an adjustable base.

Ive had two at home sleep studies, the first one with my base at 10 degree angle. That sleep study was markedly better (less AHI) than the second one. My doctor asked how I got worse after losing 80 pounds inbetween my tests.

Ive started sleeping without my CPAP, now at a 35(ish) degree angle on my base. I sleep on my back with my legs elevated as well for comfort. Ive actually been feeling pretty good the past couple days! Whether this is placebo, i don't know.

However I'm going to stick with this for now. Just wanted to share what I've found.

Im 16m postpartum and dealing with all sorts of physical and mental health issues.

For the first time (in a very long time), ive not had to take a nap the past couple days.

Im usually so very exhausted that I require at least 1 to 2 naps every dang day. Most days I can barely stay awake and am excessively sleepy. Im at a point in my life where I'm over sleeping so much, as I miss out on life. However I usually require it to function!

I have still been going to sleep between 7-9pm. Who knows, maybe one day I'll be able to stay up a bit later!

Im giddy and ecstatic!

Hi. Ive been trying to figure out why I'm so very tired for a long time. Im wondering is Hashimotos may be why?

My aunt has hashimotos, to the point she had her thyroid removed. So I do have a family history.

My TSH has been variable, and i only get it tested once a year now. The past couple years have been fine.

However, within the past decade I used to have it checked more frequently. I had mild hypothyroidism and took levothyroxine for a time for my severe symptoms.

Over the past couple years, ive had periods of extreme hair thinning, weight fluctuations, dry skin & feeling freezing cold. The fatigue/extreme tiredness is ever present. I even am at the point where some of my deep tendon reflexes (mostly in my ankles) are hypo or absent.

Does this sound like possible Hashimotos? I have an appointment next week with my PCP and an going to ask for antibody tests.

I have negative achr and musk antibodies and a negative sfemg.

My symptoms are mostly ocular, though might experience some generalized.

I have fluctuating double vision, fluctuating ptosis, fluctuating eye muscle control (left eye will rarely turn in), fluctuating convergence insufficiency.

Overall im very tired, with daytime sleepiness and severe sleep apnea. My legs and arms get tired very easily and my tongue will feel "lazy" sometimes.

Idk. Im going to ask for a mestinon trial but I'm feeling sort of like I might not actually have this? I also have POTS, autoimmune disease (PsA), and a different neuro condition called IIH.

Ive noticed my results to the bedside tests (like looking up etc) depend on how tired I am. If I'm exhausted, my left eye droops. If not my eyelids just flicker. My icepack test produces a *barely* positive result. The rapid blinking test is positive.

What would you do in my scenario? Is a diagnosis worth pursuing? I don't want to, by chance, be diagnosed falsely. Thank you for your time everyone!

I have bilateral ears affected.

Once a day it seems, one of my ears will go deaf for a moment. Then pretty quickly the hearing starts returning with a tinnitus also.

Would this be considered fluctuating hearing loss seen in MD?

So i have Meniere's Disease. I have other conditions that can mimic or cause Meniere's Disease. However I think mine just might be genetic.

My dad and uncle both have MD. My father has a bad case of it. Although he's only had one major vertigo attack, bilateral hearing loss & ear fullness has plagued him since he was in his 20s.

When I was 27, I suddenly got the 4 major symptoms - bilaterally. This was alarming, life destroying at the time, and just overall really scary. A VNG revealed damage to my vestibular organ too. Diagnosed pppd too.

Ive long suffered from dissociation, but was doing pretty well until this big attack at 27. From my research, it seems like pppd and ear disorders can cause or contribute to this out of body sensation.

I think I'm still getting MD attacks. My vision will tilt, I'll feel nausea, my ears hurt (though not as plugged as that first big attack i had) and sometimes vertigo briefly breaks through the dissociation. I do get hearing fluctuations too and am unbalanced.

EDIT: I also get horizontal nystagmus attacks, seen by my husband

Is this possible? To disassociate from the vertigo? Is there hope to no longer be so dissociated?

My husband and I both deal with chronic illnesses, me more so as im disabled by it. He works a lot, like 50 hours a week doing hard labor. I understand he needs his rest. But this post is about how I never get to sleep in!

My daughter is 15m old and sleeps from 8:30 to 7am everyday. She doesn't wake up during the night.

I need a lot of sleep, like at least 10 hours to not feel extremely chronic illness hungover. I do best on 12-14 hours. Because I at least need 10, I go to bed right after she's been put to sleep.

My husband stays up till 12am to 1:30am everyday. This really upsets me because it feels like a choice he's making so that he'll be too tired to wake up at 7am. I would love to stay up and have a life outside of taking care of my daughter, but I don't really have that choice as I need to sleep to be able to function the next day for her.

My husband does help with putting her to sleep at night, most nights. And he does play with her a bit in the evening. But that's it! Everything else is on my plate.

I just would like to sleep in once every week or two. Thats all I'm asking. I feel so overwhelmed and burnt out.

(I understand reddit is all about breaking up. Which is a bit ridiculous imo. So if you're going to comment that, please take it elsewhere. Im just wondering if it's normal to never get a morning off and if my request for once or twice a week sleeping in is fair?)

Edit: posted on my main account

Hi,

I have IIHwop, but papilledema does sometimes show up on mri.

My main symptoms are visual, headaches, vertigo, hearing, mental health. I have a vp shunt, but because my ventricles were tiny BEFORE the procedure, there is only so much it can drain. My right ventricle is currently slit like. Im at the max they can drain without it collapsing my ventricle.

I also have POTS with wildly swinging blood pressures. Sometimes when I stand I have pre-syncope, but majority of the time my blood pressure spikes upright. I saw a world renowned POTS doctor who thinks my IIH may have damaged my body's ability to regulate blood pressure. I am on a bp controlling patch called Clonidine.

My latest visual field test showed a generalized peripheral field depression. Basically my entire peripheral in both eyes are harder to see things.

I still have vertigo, but uncertain if they're migraines related to IIH.

I had an lp recently (when i was 20 lbs lighter). It was 19op. My neurosurgeon was happy with that. But my understanding is that an lp is just a snapshot in time and 19 is very close to too high.

Basically I know I'm lucky that I even got a vp shunt since I don't have obvious papilledema. I cannot take diamox or other diuretics as it makes me very ill and Topamax put me in the psych ward.

Should I contact another doctor? Is there even anything they could do for me? My current neurosurgeon wants me to do weight loss surgery. But I dont know as I'm told it makes POTS worse. Im on wegovy but having limited results. Im postpartum and struggling.

I take care of my young daughter, mostly all on my own. Though my husband does help, her caretaking mostly falls on me. She's now 15m old.

I experience a lot of symptoms daily from my multiple conditions. But my orthostatic symptoms have been awful since my pregnancy. I have hyperPOTS and take ivabradine and the clonodine patch.

I dread standing up and picking her up. She's a 99 percentile baby and just very heavy. My high blood pressures while standing has structurally remodeled my heart and i believe that (as well as my IIH) contribute to my difficult experience. I also had severe preeclampsia during my pregnancy with an underperformed vp shunt for my IIH.

Im exhausted & living in such a fog. I feel so overwhelmed and burntout. I feel funny in the head. My vision isn't right. Im dizzy and dissociated much of the time.

Its just so hard. I ask myself, how long can I keep this up? Then I do it again all tomorrow.

My results didn't seem to look at percentage of pairs with increased jitter. You need 2 or more pairs, correct?

It only seemed to look at the mean (which was 20 jitter). The testing facility said it was a normal sfemg in my findings.

From my research, 25-30 is borderline. 30+ is clearly increased jitter.

I had two values over 30 (31 and 37). And four values borderline (between 25-30).

Can anyone confirm or deny this? I feel like I'm going crazy that this is either a (barely) positive result or maybe just borderline?

There was no blocking on my sfemg.

EDIT: I had 20 pairs tested

I had my rns, emg of my upper limb, and sfemg last Thursday. This was at a different hospital that I had never been to before, one where my MG neuro is unaffiliated.

It was a confusing visit. First they found a decrement during my rns that kept showing up. (Indicates MG) However they determined it was an artifact.

Then for my sfemg they kept saying how I was the perfect sfemg patient. They warned me the test takes 45mins to an hour, but in actuality it only took maybe 20 or less.

When I asked for a general interpretation before I left, they said everything seems healthy. And that i would get my results by Friday morning. Well it's Monday, I called in to see the hold up and they said they dont release the results and I need to contact my neuro.

I don't see my neuro for a few weeks, so that sucks. I sent them a mychart message inquiring about my results.

In my after visit summary/notes from the testing hospital, there is a field that's called: Visit Diagnoses, documented in this encounter. Under this category said: Myasthenia Gravis (primary)

Now idk if that just means they were investigating MG, but my neuro had ptosis and muscle weakness in those fields prior so idk. 🤷‍♀️ I think it just might be a billing thing.

Basically, long story short, im nervous to get my results. I hope I can at least see them before my appointment weeks away 🙃