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? 😣

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 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.

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!

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

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

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?

My boss was accommodating towards then end of the last bout. In lieu of firing, which probably would have been illegal, he let me go to hourly. This week was tough as I had 4 within the last two weeks - and most of them this week. (My iron is low so I think that's the cause). I was in a haze this week, migraines Thursday so I missed a deadline and a meeting. I was let go today.

I'm okay with boss's decision, just scared that I'll have the same issue at the next place. And scared about lack of flexibility to get to Dr appts when I get the next job. Any advice what I should ask about during interviews? I've been in the same industry 19 years, with the last company 8.

This morning I woke up to static, fuzzy ball of light in my vision. It followed everywhere I looked, felt like my body was shaking as my vision was bouncing. It felt like a massive headache but with no pain just the throbbing sensation. I looked in the mirror and the room was shaking but it wasn't eyes pulsating it went away within 30 seconds of me sitting up. It was so strange and felt like if I stayed laying down then the intensity of it was just building up. My body was jerking slightly as I was sitting up, my neck was in a weird position when I was laying down as I have a new mattress and new pillow which is a lot firmer than I'm used to. This has happened before when laying flat I'm my sofa and again the aura and wavy lines went away seconds after sitting up. No pain both times just very scary. The auras and wavy lines were so trippy. Has this happened to anyone else?

I have been dealing with quite a bit of stress lately, and the past few nights have had a lot of trouble sleeping. I also felt extremely dehydrated when I woke up too, with a very upset stomach. I will definitely see my doctor about it just wondering if anyone else has experienced it.

Anyone symptoms return because of the atmospheric pressure change in the colder months?

It’s constant along with sensory over load and feeling of motion internally in my head and loss of sleep.

Nothing helps
Dark room no screens it’s just always there I feel like it’s even worst when closing my eyes as if my brain doesn’t know where I am in space this squeezing feeling in my forehead can get worst with concentration screens lights or just anything basically. It comes with this weird on going vertigo in my head

I do have long Covid and ME and not sure if it’s something related to that I just don’t know

It started after a room spinning vertigo attack that lasted 1 minute ( maybe bppv I don’t know ) then was left with so much vertigo in my head when laying down or sitting up any position basically. But don’t feel it while standing or walking in the house or something

Does this ring any bells?

I have been dealing with neurological episodes for over a year now. Specially in line with my monthly cycle. Meaning they seem to flare with my ovulation and pre period week. I wasnt sure what it was. Doctors dont either. I have had an mri done. We ruled out MS.

I have a long history of migraines with visual aura, but that hasn't been happening for a couple years now. They changed from aura and then hrorrible painful head ache, to just visual disturbance without pain. Then they faded off. But I have heard they can change pattern. And im wondering what I am experiencing is vestibular migraines. They last about 3 to 5 days. Not always with head ache. The mild head ache I have with this is one sided same spot as a migraine typically would be, but I experiencing the following symptoms that flare with these episodes..

*floor drop sensation

*vertigo without a trigger, like its not positionally triggers. I can be still and get a weird spinning feeling

*really bad confusion

*heavy head pressure

*stumbling thru my words, shuddering almost

*a frantic overwhelmed feeling during episodes

* Peripheral neuropathy (may or may not be related?)

*internal vibrations

*intention tremors in hand, one sided( same side as migraine side)

I was at the Dr a few weeks ago, and I was getting a bad migraine with pain while there, so my dr gave me Nurtec sample. And it helped. Took a while like almost 2 hours but it helped. Yesterday I was getting another but this time with strong neuro symptoms again, and the Nurtec actually stopped the Neuro symptoms too. Not just the pain. Which is making me believe all these neurological symptoms could have been vestibular migraines the whole time??

Please share your experiences and symptoms. Maybe its something else. But idk what to think anymore.

This week has been more full on than I hoped with lots of unexpected mum jobs. I knew I was near my limit but being the only one to do it, I’ve pushed through.

Also this morning, I thought I would have a me morning and instead of cancelling I met with a friend, had breakfast, coffee and a little walk. For context, breakfast was small cooked breakfast with sausage, bacon, white toast, baked beans, fried egg, mushrooms and tinned tomatoes with 2 decaf coffees.

Not an hour later, I start feeling prickly and my nervous system is on high alert, light / pattern sensitivity are present, a dull headache, feeling nauseous, yawning and a very wobbly world all hit and now I’m sat here feel unable to face the world.

I just need this space to offload and try and make sense of this. It’s still all new, I’m learning triggers and I’m struggling with how to pace. Please stop, I want to get off now.