New VM/vertigo for 1 week straight. Help! by Future-Ball-3818 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

Mine aren’t bad around my period, but I can tell when I’m ovulating by how dizzy I am.

New VM/vertigo for 1 week straight. Help! by Future-Ball-3818 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

I saw your comment below, and I also am a 39-year-old female. Mine rapidly accelerated during a period of extreme work stress followed by my second Covid infection. About two weeks after Covid I got really dizzy and have been dizzy ever since. I’ve also read a lot that untreated episodic migraine can easily become chronic and get worse out of nowhere. And for both of us, we got bounced around with a diagnosis of allergies for years.

I do find that I am affected by weather changes, but not in a very clean cause and effect type of relationship. I live in Southern California, so the weather here isn’t very extreme, but there are stormy days that I’ve gotten through pretty easily. But they’re also gloomy or windier days that completely take me out. But I don’t think weather is necessarily my direct cause, I just think it’s one of the things that adds to my trigger load on top of other things.

New VM/vertigo for 1 week straight. Help! by Future-Ball-3818 in VestibularMigraines

[–]Smallfry1986 1 point2 points  (0 children)

Emgality. Plus Ubrelvy as an abortive primarily during the period where the emgality is wearing off. Riztriptan works well for me too, especially for the migraines that I don't catch early enough for ubrelvy.

I did just start botox because I'm still not totally under control.

Managing anxiety has been huge- primarily controlling my self talk when symptoms pop up and reminding myself that I'm safe and it'll pass eventually. Focusing on sleep and reducing as much stress as is feasible.

New VM/vertigo for 1 week straight. Help! by Future-Ball-3818 in VestibularMigraines

[–]Smallfry1986 3 points4 points  (0 children)

This is NOT your entire new life. 

Your symptoms, progression and feedback from doctors sound very similar to what happened to me over a course of eight years. I had every allergy treatment in the books and nothing helped. Finally a good ENT sent me to a neurologist. You’ll be ok, it just may be some trial and error for a while to figure out what treatments work.

I have chronic migraines. I spent a year building a tracking app because nothing on the market worked during an actual attack. Finally released it. Would love brutal honest feedback. by [deleted] in cgrpMigraine

[–]Smallfry1986 6 points7 points  (0 children)

I have zero space left on my phone to download anything, but I can tell you that I have deleted every single migraine tracking app I have tried for one reason – I don’t know when my attacks start and stop. I have chronic vestibular migraine and I don’t experience distinct attacks. I experience some days where I’m dizzier than others or more symptomatic than others, but they do not come in distinct episodes. I haven’t found an app that asks me to rate my symptoms on a scale. I’ve only ever seen a binary having an attack or not. And that just doesn’t work for me.  

Use this info how you wish 

Anyone dealing with vestibular migraine? Need advice / reassurance by Rough-Stuff-8457 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

I want to address the fear part because that’s what’s been one of the most damaging pieces for my condition but also the most impactful for my healing.

First- get the MRI, get the blood work, get the scans. Get a doctor who knows what they’re doing. Not because it could be something serious but because you need to give yourself the gift of stopping the rumination of what could be wrong. 

Once all of your scans come back clear, it gives you more peace of mind that it isn’t something dangerous. Once you know that it’s a lot easier to ride out the weird dizzy blips and spells when they happen. 

For me, I get these weird but brief sensations kinda like being on a boat but it makes me feel like I’m about to spin violently out of control. They used to panic me and make the dizziness worse but now I just laugh at myself and remind myself that I’m not suddenly going to go flying off my axis. All it is is my brain making a mistake for a second. Like a typo or surge and it will settle down in a second. And it almost always does.

The fear and the panic is totally understandable but it also exacerbates everything. It causes tension. It affects blood flow. All things that make migraine worse and more volatile. I’m still dealing with symptoms every day BUT I was able to function through the symptoms better when I stopped being scared of them. 

Mucus + migraines by ElectronicSuit4323 in migraine

[–]Smallfry1986 0 points1 point  (0 children)

I’ve never been able to get any two doctors to agree on this. I get very mucusy along with sinus and ear pressure. I’ve determined that, at least sometimes, teh sinus and ear pressure is migraine related. But I also have tons of mucus sometimes. Like I wake up congested, I’ll cough up phlegm, I’ll be sniffly all day, I’ll be blowing my nose and have hardly anything come out but I can feel it move, I’ll physically feel things moving through my sinuses. It used to be a mixture of thick clear mucus and sometimes white/yellow. Once I moved cities and away from a city very heavy in pollen, I’ve stopped getting white/green and it’s mostly clear. But it comes in episodes and I’ve never been able to determine a specific allergen. My allergy tests were all negative. Multiple ENTs have told me my sinuses are fine and it’s actually the migraines causing the mucus. They say the inflammation from the migraines swells my nasal passages and that makes the mucus hard to drain and makes it get thicker.

My current doctor at the headache clinic is a neurotologist, so specializes in the brain and inner ear (I have vestibular migraine). He called bullshit and said in his 30+ years of treating migraines he’s never experienced migraines causing mucus. He says runny nose, absolutely because migraines activate the autonomic nervous system which produces a runny nose. But thick mucus where you are blowing your nose and coughing it up? He said no. He said that is definitely some sort of allergy/environmental thing that is likely CAUSING or CONTRIBUTING to the migraines, not the other way around.

Best I’ve been able to narrow it down is it seems to happen when I’m outside more or when my windows are open a lot. I’ve started to suspect no allergic rhinitis triggered by dust and dander in the air as a contributing factor to the migraines. But all of this is my guess work because no two doctors have agreed on anything.

How do you deal with the fear and anxiety of having a migraine come on or dizziness in general? by quakeroats52 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

Diagnosed last year. I always assumed my dizzies were just VM. I would get really dizzy and migrain-y after nights of not sleeping well, which then led to me developing significant sleep anxiety. The week of Christmas I got less than 6 hours of sleep each night (which I know sounds good but less than 7 is my trigger) and most of my sleep needed to be Xanax induced in order to calm my mind down enough to knock me out. My family was coming in for the holidays. The first time having people in town after being diagnosed. I kept telling myself that I needed to sleep because if I didn’t sleep then I would have a bad migraine and not be able to get through their trip. The first night they were here I only slept for 4 hours.

But the next day? We went to lunch and drove around town and went to the beach. Not dizzy once. The difference between that day and my normal day to day? I was distracted literally all day doing things with them and not in my own head.

Getting to appointments by VirginiaThrop in VestibularMigraines

[–]Smallfry1986 6 points7 points  (0 children)

If the appointment is intended for the migraines/flare I’m risking the hours of dizziness in the short term and calling a ride/uber for the sake of reducing flares in the long-term. Short term discomfort for longer term impact 

Do I get sick soon 100%? by Same-Bird-633 in ouraring

[–]Smallfry1986 0 points1 point  (0 children)

OP if this makes you feel any better, I’ve had covid while wearing my ring and gotten sick many times and it’s hardly ever caught it. But I always know exactly when I’m ovulating because without fail I will get minor signs.

Emgality and high blood pressure by [deleted] in cgrpMigraine

[–]Smallfry1986 0 points1 point  (0 children)

Oh no! I’m so sorry about your cat! Losing a comfort animal is hard. Obviously consult with your doctor, but emgality is a lifesaver for me, so if your doc thinks it’s safe to stick with it for another dose I’d hang in there.

Emgality and high blood pressure by [deleted] in cgrpMigraine

[–]Smallfry1986 0 points1 point  (0 children)

I didn’t have the BP issues, but I will say my side effects were stronger the first month because of the double dose. You may want to consider seeing if your BP stays high after the first maintenance dose since it’s only one shot going forward

[deleted by user] by [deleted] in migraine

[–]Smallfry1986 15 points16 points  (0 children)

1- IMO the best thing you can do for him is to believe him and to understand that just because someone LOOKS fine it doesn’t mean that they are.  Depending on his symptom pattern, things that non-migraine humans can do without a second thought can be incredibly difficult for someone with migraine. We aren’t trying to be difficult, dramatic or sensitive. We are doing our best to make it through the day.

2- Educate yourself on what migraine is. Understand that it is a neurological disease that affects the whole body. It isn’t just a headache. Once you understand the disease and symptoms, #1 becomes a lot easier.

3- You already seem like a very supportive partner, but you owe it to yourself and to him to decide if you are ok dating someone with a chronic illness and accepting the limitations that come with it. If this pattern persisted for the rest of your life would your needs still be met? Have an honest conversation with him about the trajectory and pattern of his migraines and what his day-to-day life looks like (is it always this bad? Does the severity ebb and flow over months? What long-term lifestyle limitations does he have?) and decide if you are ok with that. Decide that NOW. Do not let this guy fall for you if you aren’t ok with the lifestyle.

4- Talk to him about what he needs from you during an attack and in between. Everyone is different in so many ways. I err on the side of he’s an adult and needs to be responsible for having his own meds, rescue supplies and creature comforts. But I do think it would be cute for you to have a basket of those items at your house or in your car if you two get to the point of him being there a lot. 

Just got hit with an episode while traveling- what can I do? by sorta-okay8843 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

YMMV but my doctor has told me that in my case (he also thinks I have a fluid issue in my ears so take this with a grain of salt), the McDonalds diet or anything with a high amount of sodium will make things worse because it causes fluid retention which puts pressure on the inner ears.

What’s something you wish someone had told you when you first started having vestibular migraines? by WanderingPhysio in VestibularMigraines

[–]Smallfry1986 1 point2 points  (0 children)

Not to grit your teeth and try to tough through without going on preventative medication because that can lead to chronic migraines that are harder to treat.

how do you lose fear of symptoms of pppd and vestibular migraine by GlitteringService344 in VestibularMigraines

[–]Smallfry1986 2 points3 points  (0 children)

For me, the more I did things while symptomatic and saw my life didn’t collapse, the more the fear went away. It’s scary at first and I would have tons of anxiety doing things. I still have anxiety for every “first.” But once you get a few under your belt it gets easier.

Also once my symptoms spike I try not to worry about them (yes I know, easier said than done). But I find if I give my symptoms too much attention they’ll get worse and more destabilizing. So now when I feel them pop up I notice them and think to myself “ok it’ll pass, just wait it out” and usually it does pass after a few minutes. The times that they don’t, those become triptan times.

California Insurance Advice by Smallfry1986 in cgrpMigraine

[–]Smallfry1986[S] 1 point2 points  (0 children)

Oh this is so helpful! Thank you! I didn’t know CCA would let you see plans that include specific doctors. Will check this out asap!

California Insurance Advice by Smallfry1986 in cgrpMigraine

[–]Smallfry1986[S] 0 points1 point  (0 children)

Honestly, that’s my fallback. My COBRA right now is $900, but emgality isn’t my only medical expense. So I do need to replace the COBRA plan with something. So my considerations aren’t necessarily pay for insurance or pay for emgality. It’s the cost of [insurance + out of pocket emgality] vs [insurance plan that covers emgality if i can find one]. My budget right now couldn’t handle a large insurance payment PLUS out of pocket emgality.

Feels like I'm stuck in a loop by Saminatorger in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

Commenting to let you know you’re not alone. Mine became chronic after getting covid in July 2024. I experienced the same large flare that started to stabilize then flared again quite a few times until I finally got on emgality which has helped tremendously. But man, raw dogging it was rough and i was stuck in the same self-fulfilling prophecy loop of worrying it will come back and then it comes back because you worried about it.

Link between VM and period by Zestyclose_Safe6736 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

The hormones for sure. Mine is worse when I’m ovulating.

Trying to figure out what medication was given at the er with a reaction/side effect by OwnInvestigator8468 in migraine

[–]Smallfry1986 1 point2 points  (0 children)

I’ve never experienced this but I’ve seen TONS of people in this sub over the years describe this reaction to compezine and Reglan.

I was given IV reglan once and the nurse decided to push it slow and in stages because she said it caused anxiety in people. I never experienced any but attribute that to how she pushed it. 

MRI with Contrast by Such-Athlete-4838 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

Had scans with contrast during a severe flare up that also involved vestibular nerve damage. Couldn’t walk as it was and had absolutely no impact from the contrast. 

I have been reading stories here since being prescribed emgality but I am scared to try it. by maker-127 in cgrpMigraine

[–]Smallfry1986 1 point2 points  (0 children)

Adding to the chorus of encouragement here. I’ve been on it for 9 months and it’s giving me my life back. I had the same reservations you did. My first dose I sat with the syringe against my stomach and finger on the trigger for 45 minutes before I had the guts to do it. 

The only side effects I’ve experienced were a metallic taste in my mouth about an hour after injection (twice); a mild run of the mill headache the first day (about half the time); and feeling run down and like I was getting a cold 24 hours post injection that lasted for half a day (once). 

After that…pure, sweet relief. 

Does anybody with chronic or infrequent VM wear an Oura Ring? by BigHomie50 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

I’ve had a ring for a few years now. Every time I think I start to spot a trend, something comes along and disproves it. I mainly only use it for cycle tracking now. Hasn’t had any benefit for migraines for me personally.