I was prescribed Nurtec but scared to take it, since I have had bad reactions to 3 other medications.

The ones I tried were:
- Propranolol worsened my sleep apena and I experienced numbness in my feet and hands.

- Sumatriptan caused tightness in the chest

- Nortriptyline caused racing heartbeat & neck and Jaw tightness.

For now, I am icing, b2, magnesium, and occasionally taking Tynol.
Has anyone had success with Nurtec, while having issues and reactions to other migraine meds?

Staring this next wk at lowest dose requested bec I’m sensitive to meds. Nurtec didn’t work. Have folks experienced both success or side effects at this dose. Hoping for the appetite suppression! Did it help vestibular migraines? Many thanks.

Hi everyone. I haven’t been diagnosed with VM, but I’m seeing a neurologist in a couple weeks and I suspect I have VM. I have had episodic migraines with aura (maybe 1 every month or two) for at least 10 years. However, the migraines have increased in frequency the past month because of extreme stress. I have had motion sickness for most of my life. My dad has migraines also, and my grandma had severe motion sickness.

I had multiple middle ear infections last year + BPPV, which have since been fixed.

In January of this year, I started noticing that I felt HORRIBLE going into grocery stores or restaurants with bright lighting. I literally felt like I was being drugged. I felt like I was dissociated and like everything was spinning. I could not think straight, felt like I had jelly legs, and felt an odd pressure in my head. The first few times it happened, it gave me such anxiety that I had panic attacks. My mind kept going to “you have a brain tumor and you’re going to die”.

However, I found that once I got home and laid down in a dark room, the symptoms would go away entirely. So, I tried going into the store with sunglasses on, which reduced the severity a little bit, but I still feel like looking at the aisles and the people walking around were bothersome. Car rides also are bothersome for me, depending on who is driving. If I am driving or it’s a gentle driver, I am fine. If it’s not a gentle driver, I get a milder version of the head pressure and spinning. I ended up buying FL-41 glasses and those seemed to help even more, but I still really struggle when going into a store with bright lights.

I have really bad health anxiety because I have had actual things wrong with me (Crohn’s disease, mononucleosis, and a hip fracture) but I was repeatedly told by doctors at first that all of those were just anxiety or my period, and to take an anxiety pill. This has led me to be hyper vigilant about my health. This stuff that is happening to me (which I suspect is VM) is really scaring me and I am hoping that I am not alone, which is why I came here.

New blood and young blood, I'm a 15 F who is in the middle of my first Vestibular Migraine episode. It's been two weeks with constant non-stop vertigo, complemented by ear pain, nausea, poor sleep, amplified tinnitus, and falls. I haven't been able to go to school (private, thank god) in two weeks, so many triggers there, my class is so loud. And I'm struggling with keeping up on school work because of horrible brain fog; only one medicine helps the vertigo, but everything else does nothing. And the worst part is that my episodes won't go away because of the stress of my estranged grandfather, who is about hours away from passing. It's been a week of panic attacks because of the unknown of when he’ll pass. He’s estranged, so we aren't that attached but still just waiting for the call from hospice…Making my episodes consistent. I was just wondering if you have any advice, since the episodes haven't let up. If there is a way to balance this horrible system. :)

Hello, I've been put on estrogen patches to help me regain my period (I have hypothamic amenorrhea). I woke up on the 3rd day feeling like I got hit by a truck and nothing feels real, super dizzy with a buzzing feeling in the head. I yanked the patches and I don't want to go back on them again. I'm not sure what to be terrified of more; this new migraine or my osteoporosis.

Has anyone experienced the same thing? Does it get better when you stop the HRT? I'm not sure what to do anymore.

Post was removed, I think bc of a brand mention, so I’m removing it and trying again:

Background: 39F, struggling with chronic dizziness/vestibular migraines almost exclusively during follicular/ovulation for the past 3 years. Anxiety and OCD have SKYROCKETED in that time. Did a 3 month experiment on myself measuring hormones daily and found my progesterone was tanked the whole cycle (never went above 6). Also just got diagnosed with endometriosis via lap surgery in January (finally my chronic pelvic pain has a “why”).

Was just prescribed 100mg progesterone daily, since my symptoms are happening mostly outside of luteal.

This is my first foray into HRT and I’m frankly terrified…but somewhat optimistic? Dizziness has absolutely ruined my qualify of life and confidence in my body, so I’m hoping this is THE THING that helps.

Anyone with similar experiences?

Hello!
Backstory:

• My family has a long history of vertigo. Women in my family typically get ocular migraines while men typically suffer from dizziness and tunnel vision. I am a transgender man on HRT, and when I began HRT in 2019 my ocular migraines became vestibular migraines instead (got my first dizzy spell around 2020-2021, lasted for 2 weeks, lost like 15 pounds because I could barely eat the whole time). Obviously there is some sort of hormonal relationship here related to estrogen and testosterone.
• No one in my family has been able to find effective treatment.
• My dizzy spells pair with a nystagmus where my eyes drift to the right and I am constantly having to "reset" them. It is exhausting and I spend a lot of my dizzy spells either with my eyes closed or being asleep.
• My dizzy spells are impossible for me to predict and I have no idea how long they will last. There is no precursor event I can identify. There is no "trigger food" or change in pressure, and there is no correlation with when I have been taking my testosterone (I take it once every two weeks, and have also gone through periods where I cannot obtain my testosterone and therefore do not have it for 2+ months, none of which have correlated with a dizzy spell). It is also not stress related, as I had a pretty severe episode of stress in September that did not correspond with any dizziness.
• Meclizine and dramamine have both been ineffective. The epley maneuver is occasionally effective, but has been losing its effect on my dizziness over time. At first it was very effective, but now I can't seem to notice a difference before and after performing the maneuver.
• My vertigo seems to be happening more and more frequently over the last year or so. I am having to call out of work more often, which is extremely frustrating. They used to happen maybe twice a year, but they have been happening closer to monthly now.
• I have brought all of this up to my doctor, and she is recommending that I go to a neurologist as she has no recommendations on her end that she can give me.

Does anyone have any recommendations as to what I should bring up to a doctor, what other types of doctors might be effective for me to go to, or any other information at all that they could share with me?

Hey everyone,

I am hoping to get some insight from those of you who have been dealing with Vestibular Migraines or PPPD, as I am completely new to this diagnosis and just trying to make sense of it all.

For context, I am a 31y/o male, 6'5". My health started going downhill suddenly about six months ago around mid-October, right at the tail end of a very stressful period, some medication changes, and a specific physical project.

The Timeline & Onset

For some background, I took Cymbalta for sciatica from April 2024 to June 2025. After that, I did a short stint on Gabapentin from late September 2025 to mid-October 2025. Right around this same time, my dog ran away. We thankfully got her back, but it was an incredibly stressful event. I was also spending time doing a bunch of bondo and sanding on my project car. That exact window (mid-October, coming off Gabapentin, dealing with the extreme stress, and doing all that bodywork) is right when everything started to get worse and my symptoms really kicked into high gear.

The Thyroid Misdirection

Initially, we went straight down the thyroid rabbit hole. I had gained 35lbs in a year (200 to 235lbs), which my GP originally attributed to my time on Cymbalta, but I also had severe brain fog, poor cold tolerance, and crazy fatigue where I would often need to lie down midday. Over multiple tests, my TSH fluctuated (2.76, up to 5.18, then 3.47 and 4.59). My GP looped in an Endo and started me on a trial of 25mcg of Levothyroxine, alongside 5000iu D3, 100mcg K2, and 1000mcg B12.

However, after further testing, my TSH is now 1.32. With my levels sitting right in the optimal range and my ultrasounds and antibodies coming back totally clear, my thyroid is officially not the root cause of this.

The Shift to VM / PPPD

I have been dealing with a bunch of symptoms that neurology originally labeled "peripheral neuropathy" with no clear cause, but now my doctor and an ENT has brought up Vestibular Migraines and PPPD. Here is what I am dealing with on a daily basis:

• Constant head pressure and daily flares: This is the big one. It is a persistent, baseline pressure that is almost always there. I work from home on the computer from 6am to 3pm daily, and I flare up almost every single day around 11am or 12pm, which lasts for a few hours. Even outside of those flares, the pressure never leaves. Vision gets slightly blurry at time...
• Dizziness and environmental triggers: The dizziness is a persistent challenge. I never actually feel like I am going to faint, but it is just always there. It gets significantly worse when I am driving or going into big stores (Costco is an absolute killer). I also attend industry work conferences, and those environments completely kill me.
• Autonomic weirdness: Episodes of feeling overheated or flushed with sweating. When I feel a flare, I feel my heartbeat very strongly during a flare, though a recent Holter monitor came back totally clear. My Apple Watch will also actually alert me to low HRV shortly before I get an episode. (Note: Stopping all magnesium supplements at least helped with the heart racing).
• Neuropathy symptoms: Numbness and tingling in my hands, legs, or feet.
• Physical changes: Dark circles and puffiness around my eyes, subtle facial changes, muscle soreness, and weakness.

Current Status & Next Steps

My doctor has referred me to a local provider for VRT. We are also exploring potential medication paths, including SSRIs, to see if that helps reset whatever is misfiring. To be thorough, I also have an MRI scheduled for May 18 to make sure we are not missing anything else.

It is still a rollercoaster. My cognition feels closer to normal speed at times, and thankfully alcohol tolerance (and honestly a drink or two clears my head) has not sent me into an immediate flare-up, but I am still dizzy and dealing with this head pressure much of the time. I feel like I can barely drive, which is my singular hobby. It's horrible.

I know I am early in this new direction, but I have two main questions for this group:

1. Does having a constant headache and baseline head pressure, rather than distinct episodic attacks, fit with VM, or does that point more towards PPPD?
2. Did anyone else get misdirected by thyroid issues, weird neuropathy, or autonomic symptoms before landing on a VM/PPPD diagnosis?

I just cannot wait to feel better. Any advice, insights, or shared experiences would be incredibly appreciated!

So i have been to a neurologist recently and I've been diagnosed with "motion sensitivity" he asked about 3 times if i had headaches and followed with asking if any of my family has migranes and the answers to both of them are no

But all my other symptoms line up with vestibular migranes

I had a bad attack a couple days ago where i had to lock myself in a dark room mostly because i had pressure behind my eyes after being outside?

But this isn't a headache, right?

Idk it feels like it's lasted so long and i just want a answer that sums things up...

Also my dizziness is swaying/rocking motions

Also normal mri and due to do holtor monitoring

My main (and almost only) trigger is vibrations: fridge, washing machine, HVAC, etc. Does anyone else experience this or have any recommendations on how to handle it?

Sleep is impossible because any time the HVAC kicks on, I'm thrown around like I'm on a boat. Instant migraine and nausea, even if I was dead asleep a minute beforehand. My neurologist had no suggestions and didn't really seem to believe me.

The meeting rooms at work also have HVAC running most of the time. While my office is fine, the second I sit down in one of those meeting rooms, my head starts pounding and swimming. I don't know what to do.

Hey all, so in addition to vestibular migraines, I also have pretty low blood pressure. They think it’s orthotic hypotension but cardiology refused my referral. I was told more salt intake, and one electrolyte drink per day. I found eating regular meals helps, extra salt, and caffeine.

Unfortunately all the above seem to trigger vertigo and vestibular migraine attacks. Sometime the vertigo is so severe I have to stop whatever I’m doing and just sit wherever I am until the spinning stops. Or it makes my headache a lot worse.

I feel like I can’t win. I’ve been getting by on grilled cheeses or other sandwiches for supper. And lunch. As well as scrambled eggs with cheese and ham and hash browns for breakfast. And decaf coffee. Plus one Powerade every day or two. While the VM seems to be less severe, the blood pressure has been lower. This making my head feel funny, making me super dizzy, and causing me to fall or feel very faint a lot.

It’s frustrating.

I was diagnosed with Vestibular migraines a little over 2 years ago. I had consistent vertigo that never went away until I started Emgality 9 months ago.

Since starting Emgality, my symptoms have vastly improved (unfortunately not to the point that I can work, but to the point that it wasn't constant anymore). For the past 2 weeks though, I've been waking up with vertigo again, and it usually turns into fighting off a painful migraine throughout the day.

My neurologist wants to start me on botox, but it's taking awhile due to issues with health insurance (hopefully I'll start it next month).

Has anyone else had symptoms become more present again after starting an anti-cgrp? Has botox been an answer for you?

I'm really worried about it becoming severe again. I needed a rollator to get around when my symptoms were at their worst, and I'm taking online college courses now, so the stakes feel higher.

Thank you for reading

Hey! For the past 3 years I have tried different meds for vestibular migraines such as redomex, Sibelium, depakote,… the only time I had a relief from the CONSTANT dizziness was on a combo of topiramate 50mg and depakine 300mg where the only time I had symptoms was during and right after my period. It feels like a curse because the drugs work but I hate how the topiramate makes me feel. I just can’t take the side effects of topiramate anymore and my neurologist has suggested this new plan: keep me on depakote (300mg), stop topiramate slowly and change my current setraline 100mg to 150mg of Effexor (this med is new me).

I would love love to hear about some experiences with Effexor for treating vestibular M related dizziness. I’ve been reading some stuff on here that gives me hope.

If I’m not better by mid-June we will try to add propanolol.

Hope you guys can help,

VM has totally ruined my life. I miss the old me so much

Hi there! New to the group, and to VM in general.

My symptoms first began back in July '25, though I didn't recognize them for VM at the time (symptoms were fairly mild). While trying to diagnose, it was discovered that I had stage 1A breast cancer. Caught super early, highly treatable, did a lumpectomy followed by a few rounds of radiation and then an Rx for tamoxifen (estrogen blocker).

The second that I started the tamoxifen is when my symptoms became very clearly VM; horrible headaches, vertigo, nausea, sinus/ear pressure. I'm also perimenopausal, so that tips the scales further into me suspecting hormones are a big contributing factor.

Has anyone else here gone through this? I'm having a hard time convincing my care team that the tamoxifen could be the issue, but every time I stop the meds, symptoms get way better and then flare up again when I start the them again. I'd love to know if anyone else has gone through this so that maybe I'm not crazy?

Hey guys, I’m on day 4 of nortriptyline 10 mg for vestibular migraine.

Days 1–2 were fine, but now I’m getting side effects, mainly faster heartbeat at night and feeling super groggy and weird/head-pressurey the next day. Not horrible, just annoying enough to make me question things lol

Did this get better for you over time?

How long did it take?

Did you stick with the dose or go slower?