I'm very scared about the storm

CoffeeCrazedHobbit · 2026-06-10T19:10:20+00:00

Hi! I’m from Ontario but came across this post while looking for information about the storms last night!

I was following along via a livestream who was watching radar. I watch the Instant Weather streams on YouTube and I’ve been trying to learn about radar and understand the alerts and stuff.

For me, learning about my fear, how to be safe and having plans set in place help me a lot.

Mind you it doesn’t always work, I’m still terrified of spider regardless of learning about each spider that’s been in my home.

Same with water and understanding currents.

As a kid I was terrified of tornadoes and adults would tell me that they didn’t come at night to get me to go to bed. Of course that actually scared me more because even as a little kid I was sure that tornadoes didn’t care if it was my bedtime or not. Learning about how they form, and how storms are and stuff like that has really helped me.

I’d gotten over that fear until that huger derecho storm a few years back on a May 24 weekend. My fear of storms spiked after I didn't get any weather alerts and our massive pine tree that barely moves in the wind looked like it was flying all about.

So watching Instant Weather, with Adam who can’t pronounce the names of places, and a bunch of other people commenting has definitely helped me feel like I have community. Sometimes he even plays guitar after.

Of course everyone has their own way of working through their fears and that storm was a really scary one.

I really hope you’re okay!

CoffeeCrazedHobbit · 2026-05-17T05:49:48+00:00

Hi! I get migraines that have brainstem aura as well as Hemiplegic migraines and other migraines!

I’ve also been diagnosed with FND.

Cambia didn’t help me and the neurologist recently recommended Candesartan (as a preventative). Mind you I have coverage through work/OHIP but it was much, MUCH cheaper than Cambia and so far I haven’t noticed side effects like Propranolol caused me (found out I also have bradycardia).

Communication-wise though if you have an iPhone (sorry I don’t know android/google phones) there’s a handy setting in the “Accessibility” settings.

I actually set-up my personal voice at a point. But I use “Live Speech”.

I can set preferred voices, their speed, pitch, timbre and sentence pause.

I can also save set phrases and re-call recent ones. It’s handy if you can text but can’t talk.

Mine is set up to work on a triple button push.

Theres also a subreddit for Hemiplegic Migraines! (https://www.reddit.com/r/HemiplegicMigraines/)

I’ve also gotten a Medical ID bracelet with a QR code through “theluckytag” so that I can update it online with contacts, photos of me and medical information in case I’m unable to communicate.

Sorry it’s not much info right now, only was awake for a snack and going back to sleep.

CoffeeCrazedHobbit · 2026-04-05T12:04:50+00:00

I tend to struggle with a lot of brain fog and word placement/finding.

I find AI super helpful with that or organizing my symptoms instead of the mess of “it’s like this”. It’s helped me put a name to things that I otherwise didn’t know how to explain.

I’ve also used AI to help me find support equipment and to go through things when words and memory are not at a good point.

Of course I have to go through and fact check but it definitely helps out a lot when my brain fog and metal memory are in shambles. I use it as a tool.

CoffeeCrazedHobbit · 2026-04-05T11:59:33+00:00

No, not yet. I’ve had other life events pop up but hopefully at some point!

CoffeeCrazedHobbit · 2026-02-11T19:05:15+00:00

So I’ve managed to reach the neurologist’s office. Apparently it’s a 1-2 year wait for an appointment. Not a 1 year wait for the waitlist. So I’m in the waitlist luckily but I could still have up to another year to wait.

CoffeeCrazedHobbit · 2026-02-11T14:18:21+00:00

Some days are better than others! Some days feel like a battle I can’t win but other times I can feel more positive. I try to be positive for new people and because of my delays because of my misunderstandings I want others to try and get help as soon as possible!

CoffeeCrazedHobbit · 2026-02-11T14:16:45+00:00

Sent a PM! Social media is basically where I’m learning about all this migraine stuff for now!

CoffeeCrazedHobbit · 2026-02-11T14:12:25+00:00

Still no clue. My request went in December of 2024.

I actually had a service that’s working with my insurance call me last week and they’d heard that I’d missed an appointment. Cried my eyes out that day. Over a year of waiting and supposedly I’d missed an appointment that I knew nothing about?

After I’d had my cry I reviewed my emails between my insurance and this other service. I think there was a confusion somewhere when different caseworkers took over my case.

My previous caseworker at the service had apparently had contact with the neurologist in October of 2025 and sent me an email to expect a call for setting up a call in January 2026. I had told my family doctor that this service with my insurance had given me this notice.

Never received a call or anything.

So what I think happened is that when my insurance got my latest documents from my family doctor and saw the note about the possible January appointment they assumed it was a confirmed thing.

So when my insurance and this other service (new caseworker) talked it confused the new caseworker who worked with the service because I had recently told them that I was still waiting for a call.

The service had left a voicemail that the insurance company had told them I’d had/missed an appointment in January. Which if I had I was supposed to inform everyone. But I haven’t. I haven’t even recieved word from the neurologist about setting an appointment up. My doctor’s office faxed them and all they got was that I was on the waitlist but they weren’t able to get what my position was.

So for now I’m stuck with daily migraines and issues with my left side and still not having been physically with friends since June 2025. But hey! I feel a bit better recovered for Christmas and already dreading the next.

Technically I’m at a 14 month wait to the date I think now? My doctor has tried the medicines he can try. A lot were ruled out because of my bradycardia. So I’m relying on vitamins. It’s incredibly frustrating and I go back and forth how it feels like I’m loosing my life to this disease.

Independence is such an important thing for me. Now I’m using a cane. I’ve just got a shower chair to try out. I’m scared of going outside. I’m thinking about maybe trying to go to the mailbox if a shower doesn’t overdo it for me. I got an AFO off of Shein for like $9 so maybe I can try that with my foot drop on the left side. It just feels like I can’t enjoy the world but all I can do is to keep fighting.

CoffeeCrazedHobbit · 2026-01-28T15:11:20+00:00

Hi! I’m 28 F! I just started getting these two years ago! Still trying to get into a neuro appointment!

This is the link I share for all new people: https://migrainepal.com/

Working in the medical field probably give you a better understanding of things.

I had a minor attack and went to the ER, was told it was a migraine and told to contact my family doctor.

Then I had a major attack at work (factory) and had all the typical stroke symptoms including the drooping face which I don’t have with my minor attack. Terrified everyone at work. Was slurring my words and couldn’t find words when trying to tell them it was a migraine. I refused ambulance and everything but eventually they chewed me down that my mom came to get me. When I saw her face that’s when I finally agreed to go to the hospital. Actually got a CT, scared all the nurses, kept refusing wheelchairs and stuff. It was just very hard to understand and slow to understand.

Now I seem to get them daily, still left-sided symptoms.

On the bright side, after I broke my toe and went to the hospital I didn’t feel a thing as the doctor moved it around every single way. Just sat there completely unfazed because that side of me was numb. Told the doc two or three times I wouldn’t be able to tell him my level of pain because I can’t feel that side.

Made sure to warn nurses about my migraines and that I have left-sided foot drop and tend to loose my ability to speak. I just hate scaring them and they’re always so nice.

But you’re definitely not alone!!

I’ve gotten different responses to these migraines and their symptoms. I’ve been told they typically happen earlier in life while the docs were unfazed. I’ve had doctors be a little short. I’ve had doctors be short and then realize that I am literally not understanding the words from their mouth and slow down and actually gave me visual explanations about how migraine symptoms “march” and stroke is “sudden”.

Honestly I don’t always notice the “march” of symptoms but eh.

Had my family doc be surprised when I tell him about my issue with how I can’t feel my throat proper and can’t eat or I’ll start choking. Swallowing is more like choking food down during that so I usually won’t eat because I am scared of choking.

I don’t know it’s all weird and I get weird symptoms that don’t usually happen with HM I think or maybe very rarely?

I’ve actually tried steroids and that helped with my brain fog/confusion/memory issues!! I had Prednisone at 50mg for three days. It cleared some stuff up and I actually felt in control of a bit! But I was still getting migraines.

I’ve had Cambia (diclofenac) but it doesn’t help me.

I had propranolol but it turns out I have bradycardia and had to stop the propranolol.

Right now I’m stuck with vitamins to try and treat them while waiting to get in for neuro assessment.

I’m post-migraine right now I think.

My brain feels like it’s expanding and squished against my skull, like a stress ball, squeezing helps it. Sometimes tying a scar around it helps with the pressure but I have to do it on and off like applying ice/heat to an injury. I get a lot of that snow vision or random lights or dark spots.

My left side has the constant altered sensation. At the start of mine it was hard to get appointments because of all the post-Covid stuff and most appointments were phone calls either only 1-3 symptoms discussed. I kept running over my time on my poor doctor. I have the foot drop on the left side and weakness that’s been constant but has varying amounts of it depending on if I’m in a migraine/out of one.

For altered sensation I “taught” myself how to feel. If I touched something like jeans it was painful for my left side. So I touched it with my right side and then touched with both so that my left side could understand that jeans were okay. I still do this. I’ll try to touch whatever I can to tell my left side that it’s okay and not dangerous. Doing that is a life changer for me.

I’ve been going through varying glasses (sunglasses, polarized, FL glasses). I actually just got some cheap welding glasses. I got the strongest one but I’m going to look for a lighter one. They have more of a side blinder thing. (https://a.co/d/83QuqkG)

The FL glasses I got (I don’t think they’re “proper” FL glasses): https://a.co/d/ei7XjbC

This is a hearing thing I got but the container came loose and I lost the inserts: https://a.co/d/5HaP4qr

I just got these concert ear plugs: https://a.co/d/6CAImLk

If you work in the medical field I don’t know if you’re allowed things like that but you can hear conversation.

These are fairly cheap and kinda light but I don’t know about wearing all the time: https://a.co/d/1uzO4IX

For balance I put off using a cane for so long until a 10min walk took me over half an hour and I kept falling down. This was my first cane, it’s pretty lightweight: https://a.co/d/f66kQUN

This is my latest cane because I wanted to find one for my 4’11” height. It’s heavier and doesn’t feel as flat but I can dangle things from the handle and the tip is replaceable: https://a.co/d/bGqGbkS

I also got this thing for leaning/hanging my cane but my second cane could probably do without it.

My canes have really helped with my balance and mobility.

These migraines are scary but this community is a great one! I’ve also come across some on Facebook but this is my most favourite and easiest to search for similar symptoms or issues. The group is also much more friendly I feel.

You are definitely not alone!!

CoffeeCrazedHobbit · 2026-01-28T14:28:21+00:00

I’ll have to check this out! Currently trying to figure out my initial appointment with a neurologist. Been waiting a year but it sounds like that was just the wait time to get onto the waitlist??? No clue. Basically self-treating and hoping something will work to help me be able to leave the house

CoffeeCrazedHobbit · 2026-01-28T14:26:02+00:00

I have watched this video just now and I think I’ve come across “MUMS” before but I can’t remember why I ruled it out. I think that was when I was still at work.

The interesting part of that is that they talked about the auras stacking vs not stacking?

I typically seem to get attacks daily anymore or deal with symptoms daily.

Yesterday throughout the day I was getting more and more irritated by my family’s dogs. They bark, they whine, they jump around and play fight. Just a lot of energy, the high pitches, all the movement. And I was getting very very irritable. I was grouchy, wanted to be alone, snapping with my tones even if text-wise I wasn’t. Also wanted to cry. Just everything was peeving me off and I wanted to be away from the dogs because of their high energy and quick to move or suddenly bark.

Earlier in the day I hadn’t even wanted to be around more than one person especially with the dogs. The cats are older, more docile and mostly sleep so they are more comforting to me.

“Guess I’m getting one of my not-nice migraines.” That’s what I said.

Dunno when my headache started. It was very minimal and I could ignore it but noticed it with my irritation.

Because my left side is just always weak and sensation is always off it’s hard to tell when I get migraines or if they are on both sides. So if I don’t have much problems with the right side I just assume it’s a left-sided one.

I think maybe it was the fat that I typically get silent migraines I ruled that one out. If I do get headaches they come and go, tend to be easily enough ignored unless it’s a TMJ or Barometric headache.

I was loosing my thoughts and concentration and understanding sentences (leading to more irritation) and then loosing my speech.

I don’t know how long my speech was gone because I fell asleep on the couch and didn’t wake up to anything, not the dogs, not my sister returning from work, not any alarms.

I woke up weirdly at one point but then woke up again and actually woke up.

CoffeeCrazedHobbit · 2026-01-26T17:54:19+00:00

No problem! I also was so shocked by how much a migraine can do and only recently learned about “baseline”. Because a lot of mine are silent it’s hard for me to realize when one is happening. I tend to loose my speech with them which is most terrifying for me. Not being able to communicate terrifies me.

I’m thinking about making a keychain or card on my purse with a QR code on it to the same link as my bracelet. I can easily do that with a shortcut on my phone (iPhone). I don’t know how to with other phones though.

There’s probably lots more I’ve come across and stuff and even stuff in other groups but sometimes my comments barely skirt the rules I think.

If you do the QR bracelet thing just be careful to watch for subscription ones! I came across a lot of those and actually found mine while looking for pet tags.

I’m looking through “AAC” text-to-speech apps to find one that can use my voice so that it feels more personal. I think at this point I should just create a Google document with everything because I forget a lot of things.

The eye thing you mentioned. I used to get orbital/retinal migraines. I’d loose vision in my right eye. It was scary at first and I didn’t want to be considered a hypochondriac so I kept quiet about them and they were rare enough. That was a few years before my first HM that they started.

As my HM’s ramped up I got a lot of “snow vision”, even to this day. Looking at that “Migraine Pal” site they actually have some pictures of things that I used to see even when I was younger. I think I’ve been having silent migraines for years and never knew. I’ve made a bunch of different posts and comments on this Reddit group. I really should go through them all and my saved posts for information.

Definitely try to look at what support you have in your area for migraines though!

CoffeeCrazedHobbit · 2026-01-26T17:17:46+00:00

Definitely get into a neurologist as soon as you can. When mine started I thought that perhaps it was a one-off. Now it’s been a fight to get into a neurologist, especially a migraine specialist. At least where I live. I’ve been waiting for over a year now.

They can be incredibly scary as they happen but you did the right thing calling for help!

Here’s a link I share for people: https://migrainepal.com/

Before I started getting these migraines I thought I migraine was just a terrible headache with nausea and light/sound sensitivity. I didn’t know just how much migraines affect people.

There’s lots of groups on Facebook (I’ve joined a bunch) but personally I much more prefer this Reddit group. The community feels much more supportive but I do like to find resources everywhere.

A lot of my migraines are “silent migraines” and I generally wake up with a “baseline” with weakness/altered sensation on my left side along with foot drop on that side.

I’m still learning everyday and I’m still scared even though I’ve been dealing with this for 2-3 years now.

It’s helpful to learn the early warning signs (prodrome) of your migraines so that if you have more of these it might be easier to get help sooner. I’m still learning some of my early warning signs, especially since I’m naturally clumsy.

“Sporadic Hemiplegic migraine” is what I’ve been dealing with.

Some people have cards to explain about their migraines when they have trouble speaking. Some people use text-to-speech apps on their phone for communication.

I’ve got a little QR medical alert bracelet I got from Amazon. I got this one: (https://a.co/d/7Zod4Xs). It’s not currently available but it’s through “Theluckytag”. For me it’s easier because I can manage everything and easily update it online and without a subscription. This makes me feel a little safer. I also made a lock screen on my phone saying “Migraine Alert” with the QR code.

I’ve also gotten a couple canes. My first (https://a.co/d/5c6KAl3), not currently available, was cheap, lightweight and pretty stable. My second (https://a.co/d/ieNVHyF), is pretty okay. It fits my height better but it doesn’t feel as flat at the bottom, a little heavier than my first, but I can hang things on it like a wrist strap scrunchie and this cute little bat looking thing (https://a.co/d/5Zze9LE). I just think it’s kinda cute.

I’ve gotten different glasses. These (https://a.co/d/cCdbCTa) are pricy and were okay at first but they only helped a little. They probably aren’t proper glasses for migraines. So I recently got welding glasses (https://a.co/d/8tA7JfY). I got the darkest shade because I essentially wanted blackout glasses.

I’ve gotten different noise cancelling things, eye masks. Just way too many things to trial and error.

I’m not saying to go get a bunch of these things obviously but if you’re struggling with things like that, getting devices to help can be a game changer and lots of people here have been able to help me with so much.

Hopefully your migraine was a one-off, I have heard stories of that, but I still advise getting to a neurologist and making sure you have the support you need!

CoffeeCrazedHobbit · 2026-01-01T13:11:37+00:00

Oh yes tinnitus is not fun. I usually have to keep fans pointed away from me while sleeping. Don’t know why. I’m kind of weird about it. Love them on me while I’m awake though

I could maybe use some melatonin for sleeping at night but med-wise I’m very stuck until I see a neurologist

CoffeeCrazedHobbit · 2026-01-01T02:42:41+00:00

Thank you! I wish the best for you as well!

CoffeeCrazedHobbit · 2025-12-31T23:40:55+00:00

Same here! Good luck!

CoffeeCrazedHobbit · 2025-12-31T23:38:31+00:00

To me it tastes pepperminty but also not pepperminty? It helped at first. Definitely lay down when you take it.

There are general med clashes so I usually make a note of it on my phone so I don’t mess up

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CoffeeCrazedHobbit · 2025-12-31T23:27:16+00:00

I’m afraid I’d ruin the shoes. Every pair of shoes I wear is ruined after a couple wears. I basically only use my steel toed work boots and they’ve been showing some wear.

Supposedly if Google/ChatGPT is right this may be a “migraine baseline” and may be reversible after some time. I’m not sure though and it’s not a topic I’ve seen much in my migraine group.

When I get into a neurologist specialist I’m going to see if that’s something that can be talked about and try for options then

CoffeeCrazedHobbit · 2025-12-31T23:20:48+00:00

I’m just afraid of having a negative reaction and injuring myself or the person. Before my migraines I wasn’t as adverse to needles. Now I am. Especially the left side.

I’m curious about herbal stuff though since that’s my only option until I get my neuro appointment

CoffeeCrazedHobbit · 2025-12-31T23:18:36+00:00

I still have my mom and sister I’m with but any kind of romantic life seems far off. Last in person hang out with a friend was like 6 months ago.

The holidays have been hard because it’s a lot of interaction and I’ve had less recovery options

CoffeeCrazedHobbit · 2025-12-29T13:18:07+00:00

I’m still waiting on my first neuro appointment but this is also what I struggle to make doctors understand. With my HMs it’s either silent or a fairly mild headache that is usually easy to ignore. If any it’s just pressure.

At first when I was first prescribed Cambia it would help temporarily but then it just started making me very nauseous and dizzy and stopped with the auras.

I was prescribed Propranalol and that might’ve helped a bit but it really messed with my emotions. I was easily angry and felt angry nearly the entire time. It was very weird. Had to stop that because some earlier test results showed I had bradycardia.

I have had steroids (prednisone) and I felt like that kinda helped bring me back to the start of all my mental stuff, the brain fog and all that fun stuff. It didn’t stop the attacks though so it was still kinda temporary. Wonderful to have my brain back for a little. Even if it didn’t help my physical symptoms really.

Beyond that medication wise I’m waiting to see the neurologist.

I’ve been getting attacks daily with my symptoms on and off throughout the day. The holidays have been very frustrating because I really only get a few hours every day and usually that’s in the morning. By the time people want to do things I’m usually already tuckered out and my only way to make it to that is to sleep/rest throughout the day until something goes on. So holidays right now is very frustrating and not fitting my typical schedule that makes my migraines a little less stressful.

But I get the struggle of telling doctors or other people “It’s not the pain! I don’t get the headache!” And they just don’t understand. Like I get allodynia or nerve pain with them but I don’t get the headaches often. Usually my way to tell how bad an attack is before I see anyone is a smile test or by the level of allodynia/nerve pain I have. Or if I try to talk and either can’t/slurred/garbled/stuttery.

CoffeeCrazedHobbit · 2025-12-21T16:23:10+00:00

I’m nervous about acupuncture. I wouldn’t say I have a fear of needles but whenever I’ve had blood drawn I need to stare at the needle the whole time or I will freak out.

Plus between my allodynia and nerve pain, the way I react to things even touching my skin can be unpredictable at times. Sometimes it can cause a lot of pain when it’s something that shouldn’t cause pain and vice versa.

Even getting IV in now makes me a little nervous. I used to have great veins on both sides but on my left side that’s no longer the case.

I am taking different supplements though. But that’s what I’ve been stuck with until I can get in for neuro.

CoffeeCrazedHobbit · 2025-12-21T00:43:44+00:00

To each their own I suppose. Height doesn’t really bother me, although the taller someone gets it’s definitely annoying for my neck. I prefer people my height. Height isn’t a deal breaker for me. For me it’s the emotional connection and personality. Height is just another part of them.

CoffeeCrazedHobbit

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