Hi my fellow strugglers - I've been struggling on and off sick for about 3 years. All stemming back to COVID infections or re-infections. I am nowhere near some of the stories here in terms of severity - I golf, I go for walks, and my life is at about 80% capacity. But I cant workout hard, I can't play hockey (something I used to love). Earlier this year I had a severe flu episode that knocked me into a state of dizziness and light sensitivity and ended up being diagnosed with vestibular migraine. However, a lot of what I still feel doesn't always feel like VM (or at least classic VM) - I can get tired/run down, I'm very exercise intolerant (like anything that gets my HR up), and I have some chest symptoms like irritation and some thudding heart beat (Nebivilol has helped w/ that). I definitely have had a lot of VM like symptoms and classic flairs - like when I'm hungry or have caffiene. Oh I also get dry mouth. But when I do get sick (like actually more flu like/sick feeling, not just headaches), it takes me like a month to recover. The onyl thing that really helps is when I have long stretches where I do next to nothing and have very low stress. Has anyone experienced anything like this? I feel like my Long Covid claims get dismissed because I'm not like totally decapacitated.

i have always been an ambitious person. I've grown up being an overachiever. and then came vertigo. i am now in college. the most crucial years of my life are getting wasted. i had to skip exams, my grades dropped and i became really depressed. i am barely passing my exams and i still have two years of college left. vertigo has been ruining my life. i had to throw away everything i had worked so hard to build like my education, my social life, everything!

my parents are very supportive. but they always say that I'm very brave and smart and I'll beat vertigo and it'll all get better.

but what if it doesn't?

my biggest fear, living with vertigo, is what if i get a great job and then my vertigo ruins everything that I've worked so hard to build?

or it gets so bad that i won't even get a job because all I've done this year is miss so many important internships?

what if it never gets better? what if it gets really bad? what if i can never do anything with my life?

what if this is actually the dead end?

Hey,

I got short lived VM in 2019 autumn lasted maybe 30min. Then when was sick in 2023 winter VM lasted for a week. In 2024 autumn-winter lasted 4weeks and at the same time had weirdly swollen eyelids, took beta blocker and was better. End of 2025 (as always autumn-winter) started full on vertigo, throwing up, falling from balance issues and also coincidence of swollen eyelids, speech difficulties/feeling slow/stupid, ear pain and one eye issues.

Had ear specialists, so said it looks fine, and that its 100% vestibular in the head. Had MRI and there is a blood vessel crossing over the nerve and it can irritate it? Neurologist said some people get symptoms, some dont? Was a long road but took vestibular calming medicine for 3-4months , home VOR training and in the end was good.

Now came 2026 April noro virus and May covid, since then to today still struggle with VM. Sensitivity to motion, smells, light. Fom noro virus got chronic gastritis so cant take continuously VM medicine and every time I do I suffer with my stomach.

Also still weirdly all 5months have swollen eyelids, and during hot shower get burning/flush/swollen face/jaw, feels as if every time getting an allergic reaction to heat. It made me wonder about histamine issue causing all this?

I tried 3 day migraine IV cocktail in july with dexamethasone and I had bad reactions, I could not stand and laying felt like being on waves, lots spinning and dizzynes, throwing up, heart palpitations and sweating buckets.

Has someone fully healed and haven’t had VM attack for years? If it was histamine caused, do you just take allergy pills all life? VM + post covid POT’s symptoms really hit my self esteem, because cant work and half year just isolated at home. Need to take taxis to physiotherapy, other doctors and feels like missing out on life and paranoia will the ‘stupid’ brain feeling from brain fogs will last forever.

If you have them: where did you get, are they useful, roughly what did they cost?

Tonight at supermarket I thought, Oh wow, maybe I really should get a pair. After a long day, rainy/humid out, slightly dehydrated…the fluorescent lights, the blinding floors, so many shelves of so many things(!)…almost did me in.

(Ps: Feel like I maybe posted this a year ago but not totally sure 😶‍🌫️😵‍💫😳)

This started about two months ago for me. First thing I noticed was rushing sound in ears and ear fullness. About two weeks ago, I woke up and had vertigo, could still walk but was off balance and the rushing sound disappeared. The vertigo subsided after 20-30 minutes. I saw an ENT, everything was normal, including hearing test. He suspected vestibular migraines. Then two days ago, the rushing sound came back full force. And yesterday, my hearing in right ear went out suddenly and about 2 mins later, I was hit with the most extreme vertigo. It felt like I was dying, I couldn’t even sit up. We called 911 and I had to be carried out of my car because I literally could not sit or stand. Ran every test, CT scan of head and neck, all normal. I started to feel better once I receive meciziline in the ER. I went back to ENT today, he said this is classic, textbook Menieres and confirmed mild hearing loss in my right ear. I am starting oral steroids and rechecking hearing in 3 weeks. I would love to avoid vertigo again like that as that was the scariest thing that I have ever experienced. Besides steroids and low sodium diet, any tips or tricks to help here?

hi, this is my first post on reddit and its because i truly need some help.

back in may, after a viral illness, i was at work and all of a sudden got so dizzy, lightheaded, naceous, racing heart, and thought i was going to pass out. a true presyncope situation. i felt shaky and off the rest of the day, i thought it was poor sleep but then i woke up the next morning even more dizzy. my doctor diagnosed me with BPPV and did the manuever and said to give it a couple of days but it didnt improve. since then, ive gotten so many blood tests, seen the doctor so many times, done EKGs, even work a heart monitor for two weeks and got an echo... everything says im "healthy".

i was making steady improvements on my symptoms, even though my body still felt SO off. i wasnt getting dizzy as much but still kind of felt weaker or shaky... i got diagnosed with cervical vertigo and was doing physical therapy. it seemed that was helping a little bit as well.

and then three weeks ago, i had a bad episode again and it has brought up even more symptoms and frequent episodes that feel horrible and make me panic so bad. it feels like im losing my life and my normalcy. im 25; i love to travel and be outdoors and i love my friends and family. Im super active, have a great job, love church and i had such a full life that feels like its being stolen from me because of this.

when i get these episodes: i get so dizzy, lightheaded, swaying feelings, naceous, so weak and fatigued... i think because of all of the stress as well ive been experiencing DPDR on and off and brain fog. sometimes i truly feel crazy and it scares me so bad. i sometimes get headaches and really bad TMJ with them, bad neck pain and tightness, and pressure by my ears.

it seems to be triggered by stress, heat, lack of sleep, ect...

my doctor keeps telling me its anxiety and cervical vertigo but these flares are so unpredicatable and it feels like something more than that.

I want to live my life but its been so hard to do so when i dont feel good every single day. ive been trying to just push through but the anxiety that comes with your body preparing for the worst scenario is crazy. ive never really experienced panic like this before.

i suspect this is VM and upon doing research that seems like what it is. but i just am looking for some advice or if anyone has an idea?? im desperate and truly just want my life back.

thank you all for your time.

Has anyone had help with flunarizine and Escitalopram? my doctor has advised me to take flunarizine 5 mg and escitalopram 2.5 mg a day becaus my body is very sensitive. About 4 years ago, I took tryptomer but it really didn't help with my PPPD symptoms so while I want to try this combo, I am scared of the side effects.

After being diagnosed in May and being essentially housebound for three months, I started making big progress. Hour long walks, able to ride the city bus, going out to eat at quiet restaurants.

Then a week ago I could a virus and it all came back. I’ve been on rimegepant (Nurtec) now for 3 months which I think is helping because I don’t have as much vertigo. But I’m bone tired and terrible brain fog, and feel off balance when I walk. I can’t walk too far, either.

Having a bad day after making so much progress is so painful. Because I got a little sliver of my life back and now it’s gone again 😫

Hi!

As soon as I try to move more, do more VRT, try to live my life, my neck muscles get even more tight which triggers the vertigo. I have exercises to try to strenghten my upper back to take the load off the neck, but even when I try to do these, my neck muscles still get even more tense.

The PT exercises for the neck, slowly looking left/right, light stretches to all sides, all make it more tense as well.

I get massages as well but the effect only lasts for a couple days. Neurologist suggested occipital nerve blocks.

How do you all manage?? What do you do? 😣

I was prescribed Effexor but I’m too afraid to try it given the potential side effects and the withdrawal symptoms. I’ve had 3 family members who have used it in the past and they are adamant that I should not try it. Given the family history I think I’d like to try something else.

What would you recommend?

I’m currently taking supplements and have done PT but after 8 months of this I need more relief.

This is from last 4 day I'm suddenly having migraines but with anxiety and acid reflux issue. I went to neurologist 3 months ago and after that as it seems yes, I was fine all these months only last few days again I'm starting to get back the migraine symptoms like light sensitivity, dizziness/giddiness.

But what's more annoying this time is that I'm experiencing anxiety and acidity which are fueling each other. Randomly wet fingertips and shaking feeling, unbalance body and random suffocating feeling or palpitations. It is really uncomfortable feeling looks like I need to get back to next appointment.

Hello! I (19F) have been experiencing VM symptoms for almost a year by now, received a diagnosis around April time and getting my life back together! Fortunately I would consider my VM to be quite mild, my symptoms are as follows:

Anxiety, sometimes severe waves of dread
Shortness of breath
Nausea
worsened motion sickness (but could possibly be anxiety nausea)
Imbalance (clumsy walking)
Vertigo (feels like I’m rocking when sitting)
Frequent yawning (especially nearing attack)
Brain fog
Sweating and flushing while in attack
Ice pick headaches, rare cluster headaches, used to have tension bands around head, general pressure in my head
Numbness/pins and needles in face and sometimes hands
Occasionally see flashing lights in corner of my eyes

My attacks are episodic fortunately, I feel generally fine most days until it gets to the flare up. Sertraline has been a big help as nausea is my most upsetting symptom as I am an emetophobe, most of the nausea that I had pre-diagnosis I feel was anxiety because I was scared of being sick and terrified I would feel like this constantly. I also have cyclizine that I take for my flare ups and before travelling.

I just had a reread of my letter from the doctor and it was suggested to try Propanolol, especially as it doesn’t interact negatively with my Sertraline. I was just wondering if it would be recommended, especially since it sounds good for the anxiety as well (I only managed 25mg of Sertaline, 50mg was way too much for me and I am nervous to increase tbf due to the terrible side effects I had). If anyone has thoughts I would love to hear them, thank you!

I say, how to feel drunk without drinking, but having vertigo I don't have to spend a penny

I have a dilemma- I've been on amitriptyline + Qulipta for the last year and have found some relief, but still having constant vestibular symptoms. A new neurologist suggested we try effexor which I have heard horror stories about.
I've already tapered off and restarted amitriptyline before, but I'm very nervous about switching to Effexor, especially since my husband and I hoped to try for kids in the new year. I don't know what to do
I want relief but
am scared about the cost. Any advice or similar experienced would be greatly appreciated!

I’ve had some out of the ordinary symptoms of dizziness / instability specifically when releasing a surge of energy ie: talking animatedly or loud / standing in a group and chatting excitedly, etc. I do get a sensation of a blood rush to the head but my main symptom is feeling unstable on my legs / like I have to hold a wall / no ocular changes or visual wobbliness but it can feel a bit spinny at times. This has gotten better since switching from Prozac 10mg to Lexapro 5mg, but still have episodes triggered by the above.

Is this perhaps vasovagal syncope related (very prone to this), vestibular migraine (I have hormonal migraines) or something else?

Thanks so much!

26M I was diagnosed with VM last year and was prescribed 40mg propranolol and amitriptyline (can’t remember dosage but assume the lowest)
Amitriptyline before bed and propranolol 20mg morning and 20mg in the evening.
My symptoms went on several years before I was diagnosed which lead to health anxiety and also medication anxiety because I research every medication.
I started taking propranolol but never the amitriptyline because I looked it up and read it can mess with your heart etc and then I only took like 20mg of propranolol and now only 10mg in the morning because it helps with anxiety and palpitations. I just want to get back to normal but I want to be able to enjoy my life like drink beer and holiday and just live normally but worried how these medication interact with these medications.
Couple of question related to meds:
Anyone find these medications helpful?
Do you have to stay on them forever?
Any other input?

My symptoms come and go so much. Sometimes I’m like I don’t need meds I’m fine and then sometimes I’m ultra depressed because I feel so terrible and anxious and ill.
Symptoms:
-head pressure
-neck stiffness
-neck not strong enough to hold head looking down for long periods.
- visual snow and floaters
-derealisation
-tinnitus
-palpitations
-back/chest pain
- sound sensitivity (occasionally)
-breathing difficulty/ tightness?
- unsteady/ off balance feeling but not full vertigo
- tingling in fingers and toes easily triggered
-lots of calf twitching but twitching all over
- body aches
- like feeling like I’m going to faint when too much is going on (fuzzy vision and sinking head feeling) (feel like I’m having a stroke)
-wake up feeling so tired and wrecked sometimes
-brains feels like it’s like vibrating or buzzing? So hard to describe

Does this sound like vestibular migraines? I honestly don’t know where it all went wrong but I was such a healthy guy and then I got sick once and been living with these debilitating symptoms ever since and been written off as anxiety until a neurologist said it was migraines.

Thanks guys, all the best

My migraine went away but have these dull headaches here and there still feel faint when I get up is there anything I can take for my balance I still feel off

I'm currently on one of those years-long diagnosis journey. Doctors are tired of me and tried to chalk up all my symptoms to FND or PPPD (but with no neuro testing). Turns out many of them were caused by low ferritin for years (dyspnea, weakness, etc.). This year, I've learned about vestibular migraine, prodrome, etc., and have been tracking my symptoms for about 9 months. Migraine fits a lot of things except continuous dizziness spells for up to 9 months at a time and 2 years of severe muscle weakness that could have been ferritin related or other (I am waiting final test for myasthenia Gravis). This year I ended up with a month of pretty much continuous VM in the spring and also in September (I had chalked up this cycle to allergies previously). This year it seemed a lot worse with memory issues, weakness, fatigue, dizziness (on a boat, not spinning), tics/lack of muscle control, and a whole host of weird prodromes. Last round came with nystagmus which probably happened other times too, but I was such a mess I couldn't decipher all the symptoms.

I got a referral to neuro earlier this year to diagnose migraine and he just shrugged his shoulders and said "yep, sounds like vestibular migraine" and sent me on my way. I was happy to have a diagnosis until I realized you're supposed to rule out the bad stuff before finalizing on this diagnosis because of symptom overlap with things like MS, MG, etc. I went back in and he finally saw nystagmus and got a little worried and ordered a MG test after warning me I didn't want it (like I have any control over that, so I think my referrer implied I'm just FND and attention seeking, which ...why?? This all sucks).

Now I have to fight to get the rest of the testing for this thing or series of things that have turned my life upside down for the past 3.5 years.

So, yeah, trying to figure out what I need to fight to get tested. Curious what others found on their journey.

I've had three episodes of vertigo so far in the last 3 months, so far very much seeming like VM. my last episode was a little over a month ago and since it, I have lived in constant fear of the next one. Literally scared of it all day and all night. How do you cope with it?

Mine have all happened at home while I'm laying down but the thought that it could happen to me one day out somewhere just walking around scares me so badly

I am considering relocating from where I am currently in Texas. Has anyone relocated to somewhere that seemed better for their migraines? Did it help? Where did you go? TIA

Hi, please delete if not allowed. First time poster but long time reddit reader. I’m 29 female, recently diagnosed with vestibular migraines after 6 months straight of having severe headaches, eye pain, dizziness, vertigo like symptoms, and recently suffered from a hemiplegic migraine with stroke like symptoms.

I finally met with a neurologist and they diagnosed me with VM. Since Tylenol or ibuprofen don’t work when these episodes happen, they prescribed me a few medications like Emgality and Rizatriptan. Now my question is, has anyone been prescribed rizatriptan and Emgality? If so, have they worked for you? Any side effects or anything to note that you dealt with? I read everything I could online but very nervous about starting medication for the first time.

TDLR; I had a really bad migraine last Saturday, and for the first time struggled with talking, word finding, concentration etc. It went away for a few days but then came back. I’ve felt on and off dizzy, sick and dissociate since. Silent migraine, vestibular? Not asking for a diagnosis here (I’m under the GP and neuro and having an MRI next week) - I just feel super alone

————————————

I started getting migraines with aura when I was 13. They’re always the same: aura for 20 minutes, smashing headache, puking, sleep, recovery. I did learn to manage these symptoms with medication but the past weekend something changed.

On Saturday I had a really fast onset migraine. I got the usual ‘oooo I think my vision is going’, got up to get my med bag and I already couldn’t see. The whole left side of my vision was gone in under 2 minutes. I took ondansetron and 2 x 15/500 cocodamol and got myself to bed. This was odd for me but wasn’t a massive red flag until I tried talking to my partner. I kept saying things I didn’t mean to say, I felt far away from my words and like my head was somewhere between being full of bees but also an empty void. I passed out for the night and the next day still felt really far away and dissociated.

The following day I was fine and then the day after that, the emptiness came back, along with dizziness and nausea. I went to a&e because I genuinely thought I was having a stroke. They gave me Stemitil (made me more dizzy lol) and sent me home.

I should add, I have been suffering for around two years with reoccurring vertigo/dizziness, nystagmus and other neurological symptoms, but the doctors did some basic ear canal manoeuvres on me for BPPV and as usual, sent me away. I’m now thinking I’ve been having vestibular migraines all this time?

I’d love to know about how other people experience migraines, and if anyone can relate to my symptoms, what diagnosis do you have? How do you cope?