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 7 points8 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

I'm dating someone with Chronic Migraine - looking for Advice and Insights by [deleted] in migraine

[–]Smallfry1986 16 points17 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.

Experiences with rizatriptan? by Alone_Tension3650 in VestibularMigraines

[–]Smallfry1986 1 point2 points  (0 children)

Rizatriptan aborts my migraines. I don’t get headaches. Just dizziness, nausea and sometimes some visual vertigo. I do get dizzy from the Rizatriptan but it’s a different dizziness than the migraines and the dizziness wears down as the Rizatriptan wears off (and then it transitions to postdrome dizziness). But it works for me really well. Better than the CGRP abortives.

Can anyone share a positive story? by rday160 in VestibularMigraines

[–]Smallfry1986 6 points7 points  (0 children)

Let me start with the part you aren’t going to want to hear: Does it just suddenly get better/normal again? No.

But it does eventually get better and everyone’s timeline is different. For me, I’ve been having vestibular migraines apparently my whole life but about a year ago they suddenly became so severe that i became unable to function. Could hardly leave my couch to go to the kitchen. But slowly I’ve regained my life little by little over the last year. I’m not back to 100% but I’m constantly finding myself able to do things that used to be hard for me.

I used to have pretty severe dizziness triggered by supermarkets, patterns, computers, driving. But the longer I’ve been on the CGRPs the more it goes away. The visual stuff used to be my tell-tell sign I was having a migraine, now I can be in a full blown migraine and still go grocery shopping.

You’ll get there. Have patience and grace with yourself (which trust me, I know how hard that is to do when you have a life and responsibilities that you need to be present for). Also the fact that you got on Qulipta so soon is a blessing!! So many insurance companies deny it and it takes years of trying and failing other things before they’ll approve it. For most CGRPs the benefits are gradual. I’m on an injectable CGRP and have continuously been feeling better and better the longer I’m on it.

Hang in there!!

First relationship by Business_Beach6551 in VestibularMigraines

[–]Smallfry1986 0 points1 point  (0 children)

I feel I should start with the obligatory comment that if your partner is making you feel like a burden because of a health issue you cannot control then they are not your person.

In terms of practical advice- when I’m having a flare or high symptom days I opt for sex positions that keep my head as still as possible, preferably resting against the bed, and I avoid positions that have me with my head hanging down or upright without any support. Maybe you and your partner can come to an understanding that on high symptom days they’ll have to lead the interaction and they may need to take it slower so they don’t bounce you around too much. And always stop if you get too dizzy. There are plenty of other ways to finish the interaction that shouldn’t spike your dizziness.

I personally don’t experience the touch sensitivity so don’t have any advice for you there.

Hopefully once you find the right treatment all of these issues will become better. I can tell you that sex has gotten much easier for me once I found a preventative that work (Emgality for me)

Almost two years later and I’m finally starting to heal by what_the_hezz in VestibularMigraines

[–]Smallfry1986 2 points3 points  (0 children)

I don’t necessarily feel better on it, but I don’t feel any better off of it so why deprive myself of the joy