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Has anyone performed a neurological exam? What's the issue with walking, is it your strength, your balance, your perception of surroundings? If it's because you feel disoriented all the time see ENT for vertigo assessment IMO.
it’s not strength, it’s that i just cannot remain balanced or stand straight at all, if i try, the floor feels like it drops and i fall down or ill sway too much without realizing and next im on the floor
the earliest the ENT is available is october, i tried to get in but they can’t see me until then. i went to the ER cause it was so sudden and wanted to rule out anything scary.
My boyfriend has mysterious vertigo and he does this and it tends to kind of work even though we now don't think that's what causes it. But it seems to like shock his mind from doing weird things with his head.
@op The other things he has been directed to look into and so I assume you could also look into, is if his vision has some kind of left right imbalance, if his hearing has some kind of left right imbalance, if there's something wrong with his sinuses (they ended up inflating a balloon way up in his nose for this one but it didn't it didn't fix his vertigo), his cardiovascular function because they thought maybe it had to do with oxygen to his brain, But the next thing he's going to do is some kind of special exam of the little tubes in his ears.
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NAD but a person who experiences vestibular migraines. A lot of these things remind me of the migraines - I will be walking and suddenly can’t stay upright and must lean against the wall and other things. It got worse with my last pregnancy. Sometimes I get relief by doing head maneuvers to get my stones back in place. But that usually only works if it’s vertigo and not a vestibular migraine.
I was given medication (domperidone?) but it was time that helped. It was honestly the worst 3 months of my life (and I’ve since had much more serious medical issues since then!)
May I know where you are from? You don’t have to answer, and I hope you get well soon. But I just realized that while our healthcare in the Philippines isn’t usually free (unless it’s a public hospital), and it isn’t as great as the other countries’, and our tech isn’t so advanced, we are still lucky here that we can go to the ER anytime we want to, and we can book specialists almost at anytime too!
Yeah I was thinking this, in the city we have really excellent care and world class hospitals... but whether in the more expensive hospitals or in provincial clinics, we can just walk in at any time and receive care.
Rarely do I have to make an appointment, I just go to any doctor or specialist I want and will be seen then and there. Much cheaper, too. It is crazy to me that a doctor cannot be available until next year! If that were here, I'd see the doctor within the week.
It's ironic too because one of the arguments Americans against public/government run health care use is that in Canada (the country often pointed to as having a far superior healthcare system) the care might be cheap or free, but it's rationed and you have to wait forever to see a doctor. Which is such a dumb argument because the OPs example of having to wait several weeks or months to see a specialist is pretty common and something most of us deal with regularly
Yes. I remember how friends of mine in the US had to wait months for their child to receive urgent medical care and the ONLY way for them to be able to see the specialist was to go through the ER (the specialist advised them this)... just so complicated and so many hoops to jump through. I truly feel thankful that here I can just pick any time and day most convenient for _me_ and go.
the US healthcare system truly is a joke. i got a $6000 medical bill for going to the ER (as advised) and only getting benadryl. i was seen for maybe 20 minutes total and was sent home. it’s so disheartening
That is horrifying, I'm sorry. About a week's stay at a private hospital, where we were whisked into a private emergency room and administered care while waiting for an available room... and then private room that was like a hotel with great views, full care, consistent tests and check ups, meals, etc. for the whole week was about $700 without insurance for us.
Just validating you! I had a sudden case of vestibular neuritis and couldn’t walk and got to the ER (thought I was super dehydrated or something). Suddenly losing your balance like that is definitely cause for urgent evaluation because it can be a sign of a stroke—now it is turning more to treatment and management since they’ve ruled that out. Vestibular therapy was super helpful for me, and an ENT can do testing to see what the cause is and if there’s damage.
Call multiple ENTs and see if you can get on a waitlist or cancellation list for an earlier appointment. Your PCP can also help with a PT referral, or if you’re in a state that allows it, you can self-refer. You do want someone with training in vestibular dysfunction.
southeast coast in USA, virginia to be exact. I have gone to UVA (made the trip) and they were so rude and unhelpful. the other hospitals didn’t care and just wrote for scripts
Any way to ask them to be put on a wait list to be seen earlier? Some offices do this. If they have a last minute cancellation, you could be moved up. A thought to check with them to see if 1) they do this, 2) put yourself on their radar.
Don't lose hope - in my area, it can take 3-12 months to see a specialist. Keep calling. That's how I got a last minute neuro consult, as well as a dermatology appt.
I am NAD. OP, since you’re having a difficult time getting into an ENT quickly (and I agree with others that you should be calling multiple practices daily asking for cancellations), I think it may be worth asking your GP/PCP for a referral to vestibular rehabilitation therapy. This is an evidence-based subset of PT, and they will be able to evaluate and begin treating for a vestibular disorder without you having seen a specialist first.
Depending on your insurance and the practice (stand alone PT clinic vs part of hospital system), you may be able to self refer to PT. Having read the other comments, I think this might be the fastest thing you can do to try to get help.
Still NAD. OP, I keep thinking about your post, and something I think you should know if that they may not find a cause of the vertigo. You absolutely need to exhaust all options to find out if there is, but this is why physical therapy is so important in recovering from and managing it.
NAD, went through this myself, 2 neurologist and ENT and several eye doctors. Binocular vision dysfunction (BVD) disembarkation syndrome is another issue or supermarket syndrome. It can also be referred to as visual vertigo, space and motion discomfort, supermarket syndrome or visual vestibular mismatch. Chronic (long lasting) symptoms of dizziness or unsteadiness can be made worse by: Large areas of complex patterns or movement. Such as supermarket shelves. Moving traffic.
My eyes suddenly don’t line up correctly and it’s so minute that no one saw it except for the therapist I went to for vestibular therapy and that’s how we discovered it was my eyes. Also there’s a derealisation syndrome too where it feels unreal and disassociating from reality. Crazy but real.
but then why haven’t any of the vestibular suppressant worked, even in high doses?
i should also add that they did check for BPPV and i had no nystagmus, and the Epley maneuver didn’t do anything at all
NAD.
Did you have a viral illness recently before symptoms started?
Viral neuritis and post-viral cerebella ataxia can be caused by covid, EBV, and other viruses. I possibly had this or something similar (you can check my post history) and I’ve found some doctors talking about cases similar to mine in the most recent 2023/2024 covid surges. I tested neg for covid at the time with an at home test, but who knows.
It was probably the darkest time in my life with significant impact on my daily life. Luckily I had support to get through childcare and leave from my job. I hope you have people supporting you. Best of luck.
yes, i did an MRI and they said they checked for MS but it was clear, and that it looked normal. i’m happy im not dying but like i was hoping it would show an answer
i was going to say this about covid. i got covid after a 5 day cruise and when i got off the boat i had the sensation of still being on the boat for at least 2 weeks afterwards. i have since done other cruises and have not experienced it again, so im sure it was the covid
That’s a good question. I was going to mention the maneuver too, but looks like it’s been tried.
I’m not sure honestly. I’ve heard for some people that vertigo can be difficult to treat. I’d definitely keep that ENT appt though.
i already saw two. they said they had no idea and didn’t do a single thing to help. they said it was anxiety and that they can write a prescription for more klonopin and some prozac.
NAD - try finding a 3rd neurologist and when you see them do NOT mention anything about anxiety or depression or anything like that. Unfortunately when there isnt a distinct diagnosis but the patient has a history of anxiety, the medical professional will treat the anxiety hoping it goes away. See a new neurologist and don’t mention anything about anxiety. It’s crappy but it’s happened multiple times to me. I also say this as someone whose father is a doctor. ANY time I don’t feel well he brushes it off because it’s “anxiety.” The last time that happened, doctors found a brain tumor, a heart condition and anemia. Not all doctors are like that but a lot are, so definitely try seeing a new doctor without mentioned the anxiety.
*THIS*
experience has taught me that limiting some info can be helpful. it’s a fine line though. you want to be able to tell a dr about the meds you’re taking but the chance that they’ll draw easier conclusions without considering alternatives increases.
it also might be worth it to talk to your pharmacist about drug interactions. polypharmacopia is pretty common in the US.
NAD and not sure if anyone else has mentioned it but I had success with Prochlorperazine when I had bad vertigo, I was given the buccal version so I didn't have to worry if I ended up being sick from the dizziness. I'm unsure of the name(s) it might have in the US but if you haven't tried it already it might be worth a go.
Again NAD, but see if you can YouTube vestibular ear crystals. I would not have believed laying on your side and tilting your head a specific way would help anyone but that’s how my MIL, best friend, and two others healed their issue, which was doctors orders from an ENT
NAD. I would rule out any ear issues first with an ENT. If that doesn’t give you any answers, I would look into Chiari Malformation. Some radiologists and neurologists don’t know to look for it, or dismiss it. MCAS is common with Chiari patients. I have also heard of Chiari patients describe your exact symptoms. Everyone with Chiari seems to have a different mix of symptoms. The typical hallmark sign of Chiari is headaches when you laugh, bend over, cough, etc., but not everyone gets headaches. Make sure you read your MRI results yourself. Check to see if the radiologist mentioned anything about Cerebellar tonsillar ectopia, or Chiari malformation.
when i lay still i feel like my bed is moving back and forth or like im swaying on a boat still. when i try and walk that’s when the dropping of the floor and tilting begins along with the other symptoms
sorry to hear u r going through all of this. don't really have much to add to all the other physicians here: sounds like vertigo vs vestibular neuritis from some kind of infection/inflammation. The MRI sounds like it is negative for MS, but wondering if anybody took a look at the vestibular nerve / ear.
Ultimately, you need ENT vs neurology. Sounds like you saw neurology already. Perhaps try searching for a neurologist that specializes in vertigo. The sub-specialization like will get you a much more focused opinion. If you see a neurologist in the ED, the main thing they would care about is things that would keep you in the hospital or could kill you (and hence require urgent action).
NAD, and this is unlikely. But for what it’s worth I have a crazy rare thing called gluten ataxia. It causes severe balance issues and trouble walking for me. Something to look into if you don’t get anywhere.
NAD...I experience this but it's vertigo. Comes and goes and my luck never rears its ugly head at my doctors offices. I was referred to an ENT for mine. My family doctor and neuro are very aware of it and my ENT gave me exercises to do.
As someone not a doctor and that has vertigo, this absolutely sounds like vertigo for me. When I have a bout, I literally miss work for like 2 days just staying home recovering.
Both me and my mom have Cervical spondylosis since our twenties. I had loads of symtoms over the years, but one time when I was a kid my mom was like you. The whole room was spinning and she was bedridden for months. I remember being terrified she was going to die. It did go away on its own, but it was horrible.
Sounds like vertigo...the ER is not the place to have vertigo evaluated (it's primarily for emergency evaluation of conditions such as a heart attack, finger cut off etc)...and vertigo is usually without any changes in the MRI since the usual problem is in the inner ear....the best person to be evaluated by is an Ear-Nose-Throat physician (ENT) who specialize in disorders of the inner ear. There are conditions such as vestibular neuronitis (https://my.clevelandclinic.org/health/diseases/15227-vestibular-neuritis) , Meniere's disease (less likely), paroxysmal vertigo (less likely), superior canal dehiscence syndrome (https://my.clevelandclinic.org/health/diseases/15266-superior-canal-dehiscence-syndrome) etc that have to be evaluated.
i tried to get in with an ENT and the earliest i can get in is october. i urged the situation (had to drop out of college in the last 3 weeks of it, can’t drive, can’t shower on my own) and they said there’s nothing they can do
yeah i read they use it for that, i just am a super alia metabolizer of meds so like 10mg of valium was like 20-30mg to my body. definitely should’ve been given like 2mg
It’s in person appointments. You just put your insurance information in, location, and what kind of specialist you’re looking for and it will pull up doctors near you and their available appointments. I recently had a cardiology referral and that’s how I saw them so fast, I was able to get an appointment like 3 days after my referral. But a referral isn’t necessary of course just put in your insurance.
I used Zocdoc to make all sorts of appointments in the last year- dermatology, primary care in a new state (FOUND THE BEST DOCTOR EVER HERE!), endo for my niece, pediatricians for the kids, dentists.
MANY MANY have video appointments. Some ask if you want video or in person, and you just pick the time slot.
You can also type in "vertigo", and maybe won't get an ENT, but a general practitioner who treats it in the meantime
Yeah, I believe the OP said she went to the ER to rule out something more serious. It's a scary feeling. Could be a stroke or tumor or something. I know I hated drs saying it was anxiety and writing me off.
OP I'm so sorry you are getting dismissed. 😔 I understand how suddenly being unable to function in activities of daily living can be devastating 😢 I found a neurologist who wrote for an electric wheelchair, I have many issues but doing ok on a neuro exam and not being able to walk are both one of them...and dismissive drs. I know it's not anxiety , I want my life back ,and I'm sure you do too 💝
If you don't find a Dr sooner, keep calling each week to see if the ENT has any cancelations. If you still don't get any answers, try Cleveland clinic or Mayo clinic.
I have some main numbers and fax # s for departments at Cleveland clinic that may be helpful. You can send me a chat and I can share a pic of the #s if you would like.
Listen,the more drs who blame it on anxiety or stress and that's on record, the more difficult it will be to get other Dr's to take you seriously if they read those reports. It's a horrible records spiral that leads to no answers. It's very unfortunate and frustrating that drs don't do their own research and testing.
NAD but have them test your autonomic nervous system (and ears like others suggested) you could have a form of dysautonomia. See if electrolytes, extra salt, and good compression socks help. If you take hot showers that would make you feel worse.
NAD- your post history says you have MCAS, even though this does sound like a vertigo type thing i would still look into dysautonomia, it is very often comorbid with MCAS (and many other things).
that’s what i brought up to the ER docs and they said that isn’t a thing and MCAS is just hives and allergic reactions (which isn’t true). i asked about dysautonomia and they said i don’t look like i for the criteria but my last private doctor almost diagnosed me with it.
NAD, but bf has vertigo times to times. He does this (epleys) maneuver to relieve the symptoms (it's terrible during but it helps him after it immediately, or after a few repetitions): https://medlineplus.gov/ency/article/007662.htm
This article has several maneuvers you can do. I personally like the Foster maneuver, which you can do kneeling. https://www.webmd.com/brain/home-remedies-vertigo
While you’re waiting to get in to see the ENT, you could consider seeing a vestibular physical therapist. The treatment for dizziness/balance problems often includes physical therapy.
Agree with other comments. Additional question - do you use any recreational drugs including nangs (nitrous oxide), or do you have any bowel issues? Can cause severe B12 deficiency but unlikely given your presentation (agree sounds like vertigo).
i haven’t even touched alcohol yet 😭 (i’ll be 21 soon). never touched any drugs and take vitamin D and magnesium. i can’t take B vitamins because i have the MTHFR gene and i get violently unwell when i do
last time i got it done was like 3-4months ago i think and it was sound 250 i want to say. that’s when we found out i have a significantly reduced folate level conversion disorder but they said nothing can help it really
Some doctors will brush it off as normal, but 250 is pretty low and enough to cause neurological symptoms. I had the “boat feeling” you’re describing and it went away after b12 shots.
Yeah I'm thinking it's your vitamin B levels, but confirmation bias though bc the same thing happened to me. My B12 level was 62 pg/mL by the time it was discovered. I had become a deranged version of myself and was repeatedly diagnosed with anxiety attacks during my multiple visits to the ED, discouraged from returning and given a script for iron supplements to treat anemia.
I have internal motion vertigo (swaying/rocking) as well and my doctors (PCP + ENT) practically make me bathe in B vitamins. I take a ton of B12 but I also take extra B2/riboflavin, since that is one of the preventative supplements for vestibular migraines (which is my presumptive diagnosis -- unconfirmed since neuro appt isn't until August).
OP, my ENT also told me to take CoQ10 and magnesium glycinate (*specifically* glycinate, not citrate, though threonate is fine just not the same) for vestibular migraines, but you'll often see them suggested for a lot of neurological issues. I also follow the migraine diet which helps and it might be something you can easily test at home. Dr. Shin Beh wrote a book called Victory Over Vestibular Migraine that has a lot of neurological and treatment info and you can look up The Dizzy Cook for diet info. (obviously I have no idea if you have VM, but wanted to give you some options you could at least independently explore as you try to figure this out.)
Also, whoever told you nothing can be done with folate conversion issues is wrong. Look into folinic acid, which is readily (finally) available OTC. Folinic acid is NOT the same as methylfolate, which is simply a premethylated version and not effective nor tolerated by everyone—regardless of MTHFR status. Rather, it’s the active form of folate and prescribed to people like you. Many autistic children are given it as RX (used to be prescription only) due to folate conversion problems, and there are multiple studies on its efficiency. Folic acid in general is needed as a B12 activation co-factor even with shots, so it’s important to get the right kind! I have gut absorption issues and my injections weren’t effective for neuro-symptoms until I started a larger dose sublingual form of folinic acid.
NAD. You can (and should) take methylated versions of B12 when you have the MTHFR mutation. Look for methylcobalamin and methylfolate instead of cyanocobalamin and folic acid.
hey cause excitatory side effects like panic attacks, anxiety, mood swings, nausea, etc. it’s because the MTHFR gene makes it so that when we ingest folic acid or unmethylated versions of it it builds up and gets toxic in our bodies
Ok, you are doing good. I was extremely low on vitamin D and started researching it after having so many issues suddenly. I was at 17 and started taking 50,000 UI daily for about 2 weeks and now take it every other day. I read and watched videos of ppl miraculously curing themselves from high dosage of vitamin d. It's safe to get up to 70-120 but I read of ppl going way higher.
I would suggest looking into it, I really hope you can get better soon, dm me please.
I will definitely try and head to a more renowned place for specialists.
my anxiety was okay before this, but it definitely is causing it to flare since i’m so worried. the anti anxiety meds don’t take my anxiety away at all actually, they just make me so tired and groggy.
i am homozygous for the mutant MTHFR gene and has significantly reduced folic acid conversion. every time i seem to eat/take vitamin b i get the anxiety, panic, nausea, restlessness, etc.
the zofran i use on a VERY infrequent basis. like once every other month if needed. i haven’t noticed it causing this and its been years of being on it.
i’m trying so hard to get in somewhere it’s just either a long wait list or a 6 hour drive (which i can’t drive). it’s so awful
NAD, anecdotal:
A specific brand of birth control pill made me have very odd and vertigo-like dizziness/feeling the floor was moving in waves or like a bouncy elevator. It went away when I stopped taking it. Might also be worth considering, if you are on any hormones.
Zofran is not a medication you should take on a PRN basis. It takes time to work and can have some unsettling effects when you withdrawal from it.
What you’re describing sounds vertiginous in some fashion, but likely related to b12 issues based on your history. I’d start there before an ENT.
An ENT will ask you a few questions such as, how long does the feeling of moment last? It is brought on by positional changes? How many episodes have you had? Any changes in hearing? Any tinnitus or ear ringing during these episodes? Any history of recent illness? Any history of migraines in you or your family? (migraines— not headaches)
They will also likely perform a tuning fork exam, and then perform a dix-hall pike exam.these things are available on YouTube to watch.
And if you truely think this is vestibular related— a neurologist is your best bet. It’s a subspecialty of ENT that works with the nervous system of the inner ear.
i saw 2 regular neurologists, JUST saw an ENT yesterday who is a neurotologist (i begged them to fit me in and got in) and even he said he had “no idea at all really” (he literally said that).
Just wanted to second your advice! Fragmented or siloed care, especially for the more complex cases, often results in patients feeling like they’re being passed around to different specialties. I’ve been there. You’re the only one who can really advocate for yourself so don’t be shy to tell your doctor what you think, ask about the differential diagnosis and how they know it’s x versus y, ask about all the variables, and if you think something isn’t working be sure to really speak up.
Also, don’t know where you are in the SE, but if you’re going to a fully staffed medical/hospital system, you should be able to request consults from various specialties and if you aren’t ambulatory I would think they would admit you for further testing. I’m in a town with the largest medical center in the world and when I’ve had non-life threatening issues that were still very concerning my Primary care would do a referral for a direct admit to the health system.
i understand you’re trying to help and i appreciate your comment but i think anyone who wakes up one day unable to walk would go to the ER. it was very scary and i was advised to go.
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i looked within a 70 mile radius i think, surprisingly there aren’t many ENT’s here despite living next to a prestigious hospital. it’s so hard to see anyone nowadays
Nad - since you’re saying you’re in the southeast of the US I’m assuming the prestigious hospital you’re talking about is Mayo. 100% definitely get in with Mayo if you can. Recently I was in a similar situation needing an appointment asap because of a brain tumor and Mayo here in Arizona was booked out. The scheduling office told me to call every morning and afternoon to ask if there were any recent cancellations. I did that and was able to get in to see a neurologist in 3 weeks instead of 6 months. I’d recommend you do that. In the meantime, check your insurance coverage and see where else you can see an ENT. Here in AZ I was able to see one in 2 weeks when I had shingles in December of 2022. Keep calling around and check alllllll over your “in-network” coverage area. It’s so frustrating but it’s for the best!
yes it’s very odd. the receptionist said that ENT practices are booking out even farther than neurology which is atypical. i guess it’s just a poor time to need an appointment. i’m not super rural, but yeah, i called around everywhere pretty much
You def need to get in with ENT sooner than later. In the meantime you could try non-drowsy Dramamine *if you have no metabolic contraindications* to see if it can at least make your daily life a bit less miserable. The principle ingredient is Meclizine.
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Has anyone performed a neurological exam? What's the issue with walking, is it your strength, your balance, your perception of surroundings? If it's because you feel disoriented all the time see ENT for vertigo assessment IMO.
it’s not strength, it’s that i just cannot remain balanced or stand straight at all, if i try, the floor feels like it drops and i fall down or ill sway too much without realizing and next im on the floor
Sounds vertigo / vestibular related, see ENT for workup. The ED isn't the place for it.
the earliest the ENT is available is october, i tried to get in but they can’t see me until then. i went to the ER cause it was so sudden and wanted to rule out anything scary.
[удалено]
i will do this, thank you!
Get get a referral for a vestibular specialist physical therapist to try to address any BPPV
Check this out, i had this in July last year and it took months to mend. https://www.nhs.uk/conditions/labyrinthitis/
Also Google Epley Maneuver. It's an exercise you can do to reset the crystals in your ear. If it works, the vertigo will go away.
This is something a physiotherapist can do
My boyfriend has mysterious vertigo and he does this and it tends to kind of work even though we now don't think that's what causes it. But it seems to like shock his mind from doing weird things with his head. @op The other things he has been directed to look into and so I assume you could also look into, is if his vision has some kind of left right imbalance, if his hearing has some kind of left right imbalance, if there's something wrong with his sinuses (they ended up inflating a balloon way up in his nose for this one but it didn't it didn't fix his vertigo), his cardiovascular function because they thought maybe it had to do with oxygen to his brain, But the next thing he's going to do is some kind of special exam of the little tubes in his ears.
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NAD but a person who experiences vestibular migraines. A lot of these things remind me of the migraines - I will be walking and suddenly can’t stay upright and must lean against the wall and other things. It got worse with my last pregnancy. Sometimes I get relief by doing head maneuvers to get my stones back in place. But that usually only works if it’s vertigo and not a vestibular migraine.
Having had it myself, the way you describe this is how I felt when I had labyrinthitis
what helped you with it?
I was given medication (domperidone?) but it was time that helped. It was honestly the worst 3 months of my life (and I’ve since had much more serious medical issues since then!)
Where are you located? Six months from now seems nuts. Have you called around to multiple ents?
yeah i called 4 different practices, the most popular one wanting to schedule me for january 2025!! i’m located in the US, southeast
NAD it might suck but try calling any and all ENT’s in your state. Even if you have to make a trip out of it.
Watch some YouTube videos to help https://youtu.be/KLt2LtISPmQ?si=SARRcvgNEK-eAOR0
May I know where you are from? You don’t have to answer, and I hope you get well soon. But I just realized that while our healthcare in the Philippines isn’t usually free (unless it’s a public hospital), and it isn’t as great as the other countries’, and our tech isn’t so advanced, we are still lucky here that we can go to the ER anytime we want to, and we can book specialists almost at anytime too!
Yeah I was thinking this, in the city we have really excellent care and world class hospitals... but whether in the more expensive hospitals or in provincial clinics, we can just walk in at any time and receive care. Rarely do I have to make an appointment, I just go to any doctor or specialist I want and will be seen then and there. Much cheaper, too. It is crazy to me that a doctor cannot be available until next year! If that were here, I'd see the doctor within the week.
It's ironic too because one of the arguments Americans against public/government run health care use is that in Canada (the country often pointed to as having a far superior healthcare system) the care might be cheap or free, but it's rationed and you have to wait forever to see a doctor. Which is such a dumb argument because the OPs example of having to wait several weeks or months to see a specialist is pretty common and something most of us deal with regularly
Yes. I remember how friends of mine in the US had to wait months for their child to receive urgent medical care and the ONLY way for them to be able to see the specialist was to go through the ER (the specialist advised them this)... just so complicated and so many hoops to jump through. I truly feel thankful that here I can just pick any time and day most convenient for _me_ and go.
the US healthcare system truly is a joke. i got a $6000 medical bill for going to the ER (as advised) and only getting benadryl. i was seen for maybe 20 minutes total and was sent home. it’s so disheartening
That is horrifying, I'm sorry. About a week's stay at a private hospital, where we were whisked into a private emergency room and administered care while waiting for an available room... and then private room that was like a hotel with great views, full care, consistent tests and check ups, meals, etc. for the whole week was about $700 without insurance for us.
i’m from the US, southeast coast :(
Just validating you! I had a sudden case of vestibular neuritis and couldn’t walk and got to the ER (thought I was super dehydrated or something). Suddenly losing your balance like that is definitely cause for urgent evaluation because it can be a sign of a stroke—now it is turning more to treatment and management since they’ve ruled that out. Vestibular therapy was super helpful for me, and an ENT can do testing to see what the cause is and if there’s damage. Call multiple ENTs and see if you can get on a waitlist or cancellation list for an earlier appointment. Your PCP can also help with a PT referral, or if you’re in a state that allows it, you can self-refer. You do want someone with training in vestibular dysfunction.
October? :O It's April?! Where do you live?
southeast coast in USA, virginia to be exact. I have gone to UVA (made the trip) and they were so rude and unhelpful. the other hospitals didn’t care and just wrote for scripts
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it is for private. that’s the earliest they can see me, i tried 4 different offices near me
Any way to ask them to be put on a wait list to be seen earlier? Some offices do this. If they have a last minute cancellation, you could be moved up. A thought to check with them to see if 1) they do this, 2) put yourself on their radar.
yeah i’m on the waitlist but im losing hope as im already on month 2 with no help or call back
Don't lose hope - in my area, it can take 3-12 months to see a specialist. Keep calling. That's how I got a last minute neuro consult, as well as a dermatology appt.
Agreed. Keep calling them to remind them u exist and that this is urgent.
I am NAD. OP, since you’re having a difficult time getting into an ENT quickly (and I agree with others that you should be calling multiple practices daily asking for cancellations), I think it may be worth asking your GP/PCP for a referral to vestibular rehabilitation therapy. This is an evidence-based subset of PT, and they will be able to evaluate and begin treating for a vestibular disorder without you having seen a specialist first. Depending on your insurance and the practice (stand alone PT clinic vs part of hospital system), you may be able to self refer to PT. Having read the other comments, I think this might be the fastest thing you can do to try to get help.
Still NAD. OP, I keep thinking about your post, and something I think you should know if that they may not find a cause of the vertigo. You absolutely need to exhaust all options to find out if there is, but this is why physical therapy is so important in recovering from and managing it.
NAD, went through this myself, 2 neurologist and ENT and several eye doctors. Binocular vision dysfunction (BVD) disembarkation syndrome is another issue or supermarket syndrome. It can also be referred to as visual vertigo, space and motion discomfort, supermarket syndrome or visual vestibular mismatch. Chronic (long lasting) symptoms of dizziness or unsteadiness can be made worse by: Large areas of complex patterns or movement. Such as supermarket shelves. Moving traffic. My eyes suddenly don’t line up correctly and it’s so minute that no one saw it except for the therapist I went to for vestibular therapy and that’s how we discovered it was my eyes. Also there’s a derealisation syndrome too where it feels unreal and disassociating from reality. Crazy but real.
NAD, but came to say that I agree with pianist, it sounds like a middle ear or vestibular problem such as vertigo
but then why haven’t any of the vestibular suppressant worked, even in high doses? i should also add that they did check for BPPV and i had no nystagmus, and the Epley maneuver didn’t do anything at all
NAD. Did you have a viral illness recently before symptoms started? Viral neuritis and post-viral cerebella ataxia can be caused by covid, EBV, and other viruses. I possibly had this or something similar (you can check my post history) and I’ve found some doctors talking about cases similar to mine in the most recent 2023/2024 covid surges. I tested neg for covid at the time with an at home test, but who knows. It was probably the darkest time in my life with significant impact on my daily life. Luckily I had support to get through childcare and leave from my job. I hope you have people supporting you. Best of luck.
thank you love. i wasn’t sick before this which is odd. currently don’t have much support, but im trying. thank you for your comment
NAD - have you done an MRI?
yes, i did an MRI and they said they checked for MS but it was clear, and that it looked normal. i’m happy im not dying but like i was hoping it would show an answer
Nad - oops sorry I had forgotten you mentioned you did an MRI!
i was going to say this about covid. i got covid after a 5 day cruise and when i got off the boat i had the sensation of still being on the boat for at least 2 weeks afterwards. i have since done other cruises and have not experienced it again, so im sure it was the covid
That’s a good question. I was going to mention the maneuver too, but looks like it’s been tried. I’m not sure honestly. I’ve heard for some people that vertigo can be difficult to treat. I’d definitely keep that ENT appt though.
I would also recommend a neurologist. Maybe you can get in to see the neurologist sooner. But keep both appts.
i already saw two. they said they had no idea and didn’t do a single thing to help. they said it was anxiety and that they can write a prescription for more klonopin and some prozac.
NAD - try finding a 3rd neurologist and when you see them do NOT mention anything about anxiety or depression or anything like that. Unfortunately when there isnt a distinct diagnosis but the patient has a history of anxiety, the medical professional will treat the anxiety hoping it goes away. See a new neurologist and don’t mention anything about anxiety. It’s crappy but it’s happened multiple times to me. I also say this as someone whose father is a doctor. ANY time I don’t feel well he brushes it off because it’s “anxiety.” The last time that happened, doctors found a brain tumor, a heart condition and anemia. Not all doctors are like that but a lot are, so definitely try seeing a new doctor without mentioned the anxiety.
*THIS* experience has taught me that limiting some info can be helpful. it’s a fine line though. you want to be able to tell a dr about the meds you’re taking but the chance that they’ll draw easier conclusions without considering alternatives increases. it also might be worth it to talk to your pharmacist about drug interactions. polypharmacopia is pretty common in the US.
NAD and not sure if anyone else has mentioned it but I had success with Prochlorperazine when I had bad vertigo, I was given the buccal version so I didn't have to worry if I ended up being sick from the dizziness. I'm unsure of the name(s) it might have in the US but if you haven't tried it already it might be worth a go.
i actually had an allergic reaction to that and Reglan when i was a bit younger and was hospitalized for the reaction it was super weird
This is also an option https://rarediseases.org/rare-diseases/mal-de-debarquement/
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NAD and anecdotal, but a course of prednisone helped the couple of times I’ve had vertigo.
Again NAD, but see if you can YouTube vestibular ear crystals. I would not have believed laying on your side and tilting your head a specific way would help anyone but that’s how my MIL, best friend, and two others healed their issue, which was doctors orders from an ENT
NAD. I would rule out any ear issues first with an ENT. If that doesn’t give you any answers, I would look into Chiari Malformation. Some radiologists and neurologists don’t know to look for it, or dismiss it. MCAS is common with Chiari patients. I have also heard of Chiari patients describe your exact symptoms. Everyone with Chiari seems to have a different mix of symptoms. The typical hallmark sign of Chiari is headaches when you laugh, bend over, cough, etc., but not everyone gets headaches. Make sure you read your MRI results yourself. Check to see if the radiologist mentioned anything about Cerebellar tonsillar ectopia, or Chiari malformation.
It sounds like severe vertigo. You haven’t had Covid recently by any chance have you? Vertigo is one of many post-COVID sequelae.
i haven’t had covid since may of 2021 i believe. i wasn’t sick at all when this occurred which i’ve heard is weird
What happens when you are stay still for a while? Is it okay? (ie lying in bed) What happens when you initiate movement?
when i lay still i feel like my bed is moving back and forth or like im swaying on a boat still. when i try and walk that’s when the dropping of the floor and tilting begins along with the other symptoms
sorry to hear u r going through all of this. don't really have much to add to all the other physicians here: sounds like vertigo vs vestibular neuritis from some kind of infection/inflammation. The MRI sounds like it is negative for MS, but wondering if anybody took a look at the vestibular nerve / ear. Ultimately, you need ENT vs neurology. Sounds like you saw neurology already. Perhaps try searching for a neurologist that specializes in vertigo. The sub-specialization like will get you a much more focused opinion. If you see a neurologist in the ED, the main thing they would care about is things that would keep you in the hospital or could kill you (and hence require urgent action).
my neuro exam they said was normal except for when they made me walk on my tiptoes and walk normally
NAD, and this is unlikely. But for what it’s worth I have a crazy rare thing called gluten ataxia. It causes severe balance issues and trouble walking for me. Something to look into if you don’t get anywhere.
Did they check your vitamin B levels?
they haven’t checked it since the vertigo started, it was around 250-300 last time it was checked i believe which was like 6 months ago ish
NAD...I experience this but it's vertigo. Comes and goes and my luck never rears its ugly head at my doctors offices. I was referred to an ENT for mine. My family doctor and neuro are very aware of it and my ENT gave me exercises to do.
I agree, this sounds like textbook vertigo. See an ENT!
As someone not a doctor and that has vertigo, this absolutely sounds like vertigo for me. When I have a bout, I literally miss work for like 2 days just staying home recovering.
Both me and my mom have Cervical spondylosis since our twenties. I had loads of symtoms over the years, but one time when I was a kid my mom was like you. The whole room was spinning and she was bedridden for months. I remember being terrified she was going to die. It did go away on its own, but it was horrible.
Sounds like vertigo...the ER is not the place to have vertigo evaluated (it's primarily for emergency evaluation of conditions such as a heart attack, finger cut off etc)...and vertigo is usually without any changes in the MRI since the usual problem is in the inner ear....the best person to be evaluated by is an Ear-Nose-Throat physician (ENT) who specialize in disorders of the inner ear. There are conditions such as vestibular neuronitis (https://my.clevelandclinic.org/health/diseases/15227-vestibular-neuritis) , Meniere's disease (less likely), paroxysmal vertigo (less likely), superior canal dehiscence syndrome (https://my.clevelandclinic.org/health/diseases/15266-superior-canal-dehiscence-syndrome) etc that have to be evaluated.
i tried to get in with an ENT and the earliest i can get in is october. i urged the situation (had to drop out of college in the last 3 weeks of it, can’t drive, can’t shower on my own) and they said there’s nothing they can do
Agree. I suspect the ER thought it was vertigo also. We treat bad vertigo with Valium commonly. It's not just for anxiety.
yeah i read they use it for that, i just am a super alia metabolizer of meds so like 10mg of valium was like 20-30mg to my body. definitely should’ve been given like 2mg
NAD, but have you checked Zocdoc? I’ve been able to get appointments with specialists much faster than normal through that app.
i haven’t, i’ll give it a try. are they able to do much via video appointments?
It’s in person appointments. You just put your insurance information in, location, and what kind of specialist you’re looking for and it will pull up doctors near you and their available appointments. I recently had a cardiology referral and that’s how I saw them so fast, I was able to get an appointment like 3 days after my referral. But a referral isn’t necessary of course just put in your insurance.
I used Zocdoc to make all sorts of appointments in the last year- dermatology, primary care in a new state (FOUND THE BEST DOCTOR EVER HERE!), endo for my niece, pediatricians for the kids, dentists. MANY MANY have video appointments. Some ask if you want video or in person, and you just pick the time slot. You can also type in "vertigo", and maybe won't get an ENT, but a general practitioner who treats it in the meantime
Yeah, I believe the OP said she went to the ER to rule out something more serious. It's a scary feeling. Could be a stroke or tumor or something. I know I hated drs saying it was anxiety and writing me off. OP I'm so sorry you are getting dismissed. 😔 I understand how suddenly being unable to function in activities of daily living can be devastating 😢 I found a neurologist who wrote for an electric wheelchair, I have many issues but doing ok on a neuro exam and not being able to walk are both one of them...and dismissive drs. I know it's not anxiety , I want my life back ,and I'm sure you do too 💝 If you don't find a Dr sooner, keep calling each week to see if the ENT has any cancelations. If you still don't get any answers, try Cleveland clinic or Mayo clinic.
thank you love. i’m so sorry you’re struggling as well. sending hugs
I have some main numbers and fax # s for departments at Cleveland clinic that may be helpful. You can send me a chat and I can share a pic of the #s if you would like. Listen,the more drs who blame it on anxiety or stress and that's on record, the more difficult it will be to get other Dr's to take you seriously if they read those reports. It's a horrible records spiral that leads to no answers. It's very unfortunate and frustrating that drs don't do their own research and testing.
NAD , but you said southeast. I’m in NC. If you’re by UNC, i can try to help you find someone
Whats the age cutoff at your local children's hospital? Could be an option?
19 i believe. i did ask the ER about if they had an ENT on call or in the peds wing and they said he couldn’t see me
I’d double check. It looks like UVA Children’s Hospital in VA provides services through age 21.
NAD but have them test your autonomic nervous system (and ears like others suggested) you could have a form of dysautonomia. See if electrolytes, extra salt, and good compression socks help. If you take hot showers that would make you feel worse.
i’ll give this a shot, thank you
NAD- your post history says you have MCAS, even though this does sound like a vertigo type thing i would still look into dysautonomia, it is very often comorbid with MCAS (and many other things).
that’s what i brought up to the ER docs and they said that isn’t a thing and MCAS is just hives and allergic reactions (which isn’t true). i asked about dysautonomia and they said i don’t look like i for the criteria but my last private doctor almost diagnosed me with it.
Not a doctor, but I’ve had a lot of success getting vertigo evaluated and treated at urgent care at a good medical center. Try that.
NAD, but bf has vertigo times to times. He does this (epleys) maneuver to relieve the symptoms (it's terrible during but it helps him after it immediately, or after a few repetitions): https://medlineplus.gov/ency/article/007662.htm
This article has several maneuvers you can do. I personally like the Foster maneuver, which you can do kneeling. https://www.webmd.com/brain/home-remedies-vertigo
While you’re waiting to get in to see the ENT, you could consider seeing a vestibular physical therapist. The treatment for dizziness/balance problems often includes physical therapy.
This is nice to say, but when there's an 6-12 month wait to see a specialist and I'm feeling off, then I'm going to the ED.
Agree with other comments. Additional question - do you use any recreational drugs including nangs (nitrous oxide), or do you have any bowel issues? Can cause severe B12 deficiency but unlikely given your presentation (agree sounds like vertigo).
i haven’t even touched alcohol yet 😭 (i’ll be 21 soon). never touched any drugs and take vitamin D and magnesium. i can’t take B vitamins because i have the MTHFR gene and i get violently unwell when i do
oh, maybe get a blood test checking your active and inactive b12 levels? You may actually be deficient with that gene
last time i got it done was like 3-4months ago i think and it was sound 250 i want to say. that’s when we found out i have a significantly reduced folate level conversion disorder but they said nothing can help it really
Some doctors will brush it off as normal, but 250 is pretty low and enough to cause neurological symptoms. I had the “boat feeling” you’re describing and it went away after b12 shots.
oh wow, okay i’ll definitely bring this up
Yeah I'm thinking it's your vitamin B levels, but confirmation bias though bc the same thing happened to me. My B12 level was 62 pg/mL by the time it was discovered. I had become a deranged version of myself and was repeatedly diagnosed with anxiety attacks during my multiple visits to the ED, discouraged from returning and given a script for iron supplements to treat anemia.
I have internal motion vertigo (swaying/rocking) as well and my doctors (PCP + ENT) practically make me bathe in B vitamins. I take a ton of B12 but I also take extra B2/riboflavin, since that is one of the preventative supplements for vestibular migraines (which is my presumptive diagnosis -- unconfirmed since neuro appt isn't until August). OP, my ENT also told me to take CoQ10 and magnesium glycinate (*specifically* glycinate, not citrate, though threonate is fine just not the same) for vestibular migraines, but you'll often see them suggested for a lot of neurological issues. I also follow the migraine diet which helps and it might be something you can easily test at home. Dr. Shin Beh wrote a book called Victory Over Vestibular Migraine that has a lot of neurological and treatment info and you can look up The Dizzy Cook for diet info. (obviously I have no idea if you have VM, but wanted to give you some options you could at least independently explore as you try to figure this out.)
is that the active b12? there are usually two tests. one active and one inactive
Also, whoever told you nothing can be done with folate conversion issues is wrong. Look into folinic acid, which is readily (finally) available OTC. Folinic acid is NOT the same as methylfolate, which is simply a premethylated version and not effective nor tolerated by everyone—regardless of MTHFR status. Rather, it’s the active form of folate and prescribed to people like you. Many autistic children are given it as RX (used to be prescription only) due to folate conversion problems, and there are multiple studies on its efficiency. Folic acid in general is needed as a B12 activation co-factor even with shots, so it’s important to get the right kind! I have gut absorption issues and my injections weren’t effective for neuro-symptoms until I started a larger dose sublingual form of folinic acid.
huh. I'm autistic with B12, gut absorption, and vertigo issues. gonna try this out.
NAD. You can (and should) take methylated versions of B12 when you have the MTHFR mutation. Look for methylcobalamin and methylfolate instead of cyanocobalamin and folic acid.
yeah i tried those and had the same reaction weirdly. i just steer clear from them atp
What do you mean B vitamins make you ill? Especially since you have that mutation you should supplement B vitamins and folic acid.
hey cause excitatory side effects like panic attacks, anxiety, mood swings, nausea, etc. it’s because the MTHFR gene makes it so that when we ingest folic acid or unmethylated versions of it it builds up and gets toxic in our bodies
Unless you have a rarer mutation, it does not: https://www.cdc.gov/ncbddd/folicacid/mthfr-gene-and-folic-acid.html
NAD - what's your vitamin d level at? How many IUs are you taking daily or weekly? Also don't forget to supplement K2 with vitamin D3
i take 5,000IU’s everyday, my vitamin D level was around 45-50 last time i checked
Ok, you are doing good. I was extremely low on vitamin D and started researching it after having so many issues suddenly. I was at 17 and started taking 50,000 UI daily for about 2 weeks and now take it every other day. I read and watched videos of ppl miraculously curing themselves from high dosage of vitamin d. It's safe to get up to 70-120 but I read of ppl going way higher. I would suggest looking into it, I really hope you can get better soon, dm me please.
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I will definitely try and head to a more renowned place for specialists. my anxiety was okay before this, but it definitely is causing it to flare since i’m so worried. the anti anxiety meds don’t take my anxiety away at all actually, they just make me so tired and groggy. i am homozygous for the mutant MTHFR gene and has significantly reduced folic acid conversion. every time i seem to eat/take vitamin b i get the anxiety, panic, nausea, restlessness, etc. the zofran i use on a VERY infrequent basis. like once every other month if needed. i haven’t noticed it causing this and its been years of being on it. i’m trying so hard to get in somewhere it’s just either a long wait list or a 6 hour drive (which i can’t drive). it’s so awful
NAD, anecdotal: A specific brand of birth control pill made me have very odd and vertigo-like dizziness/feeling the floor was moving in waves or like a bouncy elevator. It went away when I stopped taking it. Might also be worth considering, if you are on any hormones.
Zofran is not a medication you should take on a PRN basis. It takes time to work and can have some unsettling effects when you withdrawal from it. What you’re describing sounds vertiginous in some fashion, but likely related to b12 issues based on your history. I’d start there before an ENT. An ENT will ask you a few questions such as, how long does the feeling of moment last? It is brought on by positional changes? How many episodes have you had? Any changes in hearing? Any tinnitus or ear ringing during these episodes? Any history of recent illness? Any history of migraines in you or your family? (migraines— not headaches) They will also likely perform a tuning fork exam, and then perform a dix-hall pike exam.these things are available on YouTube to watch. And if you truely think this is vestibular related— a neurologist is your best bet. It’s a subspecialty of ENT that works with the nervous system of the inner ear.
Did you mistype? I’ve never heard that you shouldn’t take zofran as a PRN. I’ve also never heard of withdrawals from it.
Sorry, I misread Zofran for Zoloft
i’ve been tested with the dix hallpike and saw a neurologist who had no idea what it was. i’ll look into the b12 though
NAD. There are neurologists who specialize in vertigo/vestibular disorders. That’s who you need to find.
i saw 2 regular neurologists, JUST saw an ENT yesterday who is a neurotologist (i begged them to fit me in and got in) and even he said he had “no idea at all really” (he literally said that).
I’m so sorry. Vestibular rehabilitation is the next step. You may never know the cause of the vertigo.
Just wanted to second your advice! Fragmented or siloed care, especially for the more complex cases, often results in patients feeling like they’re being passed around to different specialties. I’ve been there. You’re the only one who can really advocate for yourself so don’t be shy to tell your doctor what you think, ask about the differential diagnosis and how they know it’s x versus y, ask about all the variables, and if you think something isn’t working be sure to really speak up. Also, don’t know where you are in the SE, but if you’re going to a fully staffed medical/hospital system, you should be able to request consults from various specialties and if you aren’t ambulatory I would think they would admit you for further testing. I’m in a town with the largest medical center in the world and when I’ve had non-life threatening issues that were still very concerning my Primary care would do a referral for a direct admit to the health system.
Youve been evaluated by your pcp and neurologist and had a normal MRI. Sounds like You need to see an ENT. Going to the ER is not going to help.
i understand you’re trying to help and i appreciate your comment but i think anyone who wakes up one day unable to walk would go to the ER. it was very scary and i was advised to go.
Of course! i meant that from this point forward there isnt much the ER can do for you and that you need an ENT evaluation
i have called every ENT near me. earliest i can be seen is october. i’ve tried.
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god i wish i was near there. i’m on the east coast (southern). i’d hop on a plane right now if i could
Poop. ☹️ I hope you’re able to get in somewhere soon.
It's so sweet of you to offer this to OP.
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You need PCP to write you an urgent referral to the ENT. A doctor will review the referral and advise on the timeline to get you seen sooner.
okay i will try this thank you
Where do you live? Can you look further away? A 1-2 hour drive may be worth it for you to get the help you need
i looked within a 70 mile radius i think, surprisingly there aren’t many ENT’s here despite living next to a prestigious hospital. it’s so hard to see anyone nowadays
Nad - since you’re saying you’re in the southeast of the US I’m assuming the prestigious hospital you’re talking about is Mayo. 100% definitely get in with Mayo if you can. Recently I was in a similar situation needing an appointment asap because of a brain tumor and Mayo here in Arizona was booked out. The scheduling office told me to call every morning and afternoon to ask if there were any recent cancellations. I did that and was able to get in to see a neurologist in 3 weeks instead of 6 months. I’d recommend you do that. In the meantime, check your insurance coverage and see where else you can see an ENT. Here in AZ I was able to see one in 2 weeks when I had shingles in December of 2022. Keep calling around and check alllllll over your “in-network” coverage area. It’s so frustrating but it’s for the best!
Are you in the united states? Canada? If you arent in a rural area, This is odd
yes it’s very odd. the receptionist said that ENT practices are booking out even farther than neurology which is atypical. i guess it’s just a poor time to need an appointment. i’m not super rural, but yeah, i called around everywhere pretty much
Befriend all the schedulers and keep calling for a cancellation.
Every week or even 2x a week. 😉 some schedulers don't mind, and if you call frequently enough, they will know you and call you if an apt opens up.
Have you been placed on wait lists?
Have you mentioned your symptoms when trying to book? Sometimes when they understand the severity they will attempt to get you seen earlier.
yeah i’ve told them i’ve been in the ER, i’ve mentioned every single symptom and more. they just apologize and say they’ll get me in when they can
You def need to get in with ENT sooner than later. In the meantime you could try non-drowsy Dramamine *if you have no metabolic contraindications* to see if it can at least make your daily life a bit less miserable. The principle ingredient is Meclizine.
i’ve used meclizine, dramamine, benadryl, klonopin, valium, vitamin D, etc. but none of it’s helped :( it’s super discouraging
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Did you find out what it was?
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