First off, I suffer from hemiplegic migraines, which can get bad enough that they look like strokes and can progress to coma. Already had the coma progression last month, and now doctors are afraid of treating me. The medication I'm on does almost nothing for me.

Enter XÜM. I took a tab of Beyond Molly and a tab of Beyond Shrooms a few hours ago for the first time. That was the most relieved my brain has been in a long time. I legitimately felt like I was being put into a trance and I loved every minute of it. I forgot what it was like to be that relieved.

I'm not here to give medical advice or say I've solved all migraines. This is just my story. I've been able to minimize my hemiplegic migraines, while all medications I've been prescribed have been ineffective. I already got to the coma progression of hemiplegic migraines last month, and I will do anything I can to prevent it from getting to the next progression: death. Doctors at this point are too scared to even try any other medications for me.

So, I came up with my own list of things that help me in conjunction with my current medication. I dubbed it What's Your Security Blanket? I've since come to realize that if you strip it all away, the answer for me was love. If I engaged in things I knew I loved unconditionally, my brain would stop fighting me. And when I finally realized that I loved life and I loved myself, my brain finally trusted me to keep it safe. When a migraine starts up now, I think to myself "What do I love?" and whatever my brain thinks about determines the next thing I will do.

There are still things that trigger my migraines; flourscent lighting being the primary trigger for me. But if I surround myself with love, each day becomes a little easier.

To those suffering from anything, please be gentle on yourself; your life will always matter. To those watching loved ones suffer, please be there for them. If you don't know what they need, ask them. There are answers out there, and I hope they find everyone soon.

#ShowLoveSpreadLove #LoveWins

Has anyone tried Florus roll-on applicator? I know it's made up of stuff that other people have mentioned, just wondering if anyone has tried it, and what they think about it.

Actively having an HM episode. No friends to call. Afraid of the ERs at this point. I'm so tired.

A hemiplegic migraine episode I had last month ended in a trip to the ER, where the bright fluorescent lights induced a waking coma.

I couldn't move my body and my eyes were forced shut by my brain. I got coded as a stroke patient. I was eventually able to whisper "light trigger" and they turned off the lights and I regained control of my body

Has anyone made ginger infused ice cubes. You can crush them up in a sandwich bag. Ginger ice pellets are incredible! Helped me a lot with nausea.

Also, ginger chews/candy put in the freezer is 💯

So, yesterday, while at a doctor's appointment, I had a hemiplegic migraine start. Had only gotten to the nausea stage. I saw a gas station across the street, and I instantly thought to myself that I wanted a slushy. After getting said slushy and the ensuing, inevitable brain freezes, I noticed that my nausea had gone away.

Later on in the evening, the nausea came back, so I took a cold shower and it went away again. Has anyone else had success with using cold like this to stop one? I use a cold gel cap occasionally, but the slushy worked so much better for me.

After 34 years of countless doctor's appointments, muscular atrophy, a subdural brain hematoma, and 3 concussions, I finally was able to bring my research to medical professionals and get officially diagnosed.

Recently and inadvertently, I was also induced into a waking coma due to fluorescent lights. I have finally come up with a system that works best for me for my conditions.

AMA

https://preview.redd.it/uhfrcvw21hbh1.jpg?width=2736&format=pjpg&auto=webp&s=a6b5948297e5d7744095fa4090d5c94bd64b5eeb

THE BEACONS ARE LIT!

I have compiled a system to help regain control of my life.

I'm sharing my findings with you guys, hoping that it helps any of you dealing with anything that has plagued me.

Diagnoses

I have scapular muscle atrophy on my right side, high spectrum - high functioning AuDHD, and hemiplegic migraines.

Last year, I had a subdural hematoma with an 8 mm midline shift. This year, I've had 3 concussions. All of it put on paper is more complex than I ever thought it would be.

Autism and hemiplegic migraines are actually genetically linked to an extent. I would actually advise anyone who gets hemiplegic migraines to get an Autism Spectrum Diagnostic. Not saying you are definitely autistic, but you will find out a lot about your sensory thresholds, and that will help you manage the migraines.

Hemiplegic migraines are simply defense mechanisms for the brain. Your brain doesn't trust youself to protect it, so it starts going into Hibernation Mode.

From my experience, if I just make my brain feel happy, I can often manage the migraines and heal from the Traumatic Brain Injuries a lot quicker than I was able to with just standard medicine alone. Here's my playbook.

Triggers

Turns out I have high sensitivity to a lot of things. With hemiplegic migraines, overstimulation of anything triggers an episode. Here are some of the worst ones for me.

Stress

Stress might be the most common first trigger. It has been for me. Find a safe way to manage it. Nothing is worse than a trip to the ER cause you were too stressed.

Multiple Audio Strems

It doesn't have to be loud for it to be a trigger. Too many overlapping sounds become unmanageable.

Light

Holy hell, fluorescent lights are the devil. They flicker at such high frequency, and most eyes and ears can't see or hear them. The brain can detect it, though. If a migraine gets to be too bad, even outside light will be too much.

Smells

Pungent smells that you are not fond can be a fast track to migraine symptoms.

Touch

If you adamantly do not like how certain textures or fabrics feel, avoid them.

Injury

Now this one is a double-edged sword. I have an extremely high pain threshold, because I've been hurt a lot. Since these migraines can be so severe, the brain starts ignoring lower scale pain. But if you have an injury that is great enough for you to feel the pain, there's a good chance a migraine is right behind it.

Warning Signs/Symptoms

Nausea

Nausea is usually my first symptom that I'm about to have a migraine. If you start to feel nausea don't ignore it. Drink some water and try to eat something light.

Eye Discomfort

Often very close to nausea is eye discomfort for me. If the migraine gets too bad the lights start bothering more

Brain Fog

Next up for me is confusion. Recall gets affected

Losing track of whatever task you were doing. You can start feeling dizzy.

Weakness

If it gets bad enough, half of your body will start being visibly weaker. It starts with only half, but if the migraine episode worsens, your whole body will shut down which could lead to a coma.

Utility Belt Checklist

Visual Protection

When a migraine hits, dim the lights. Get a migraine light on Amazon. Look specifically for 520 nm. That's the most soothing light wavelength on the spectrum. Called Matrix Green... 👀 👀

Highly suggest some wrap around sunglasses. Cataracts style. Protects from most brightness outside. If you're really having bad migraines, or you're suffering from a concussion or head injury, however, get welder sunglasses. Theres a flip style one on Amazon that I'll link below, along with other products I mention. They are measured in IR units. 8.0 for me was nice for me during a bad concussion recently. If you have a lot of light sensitivity, you might need IR 10. When it snows, remember the ground is the pure white reflecting all sunshine into your face. You might need IR 10 in the winter.

They also make glasses designed with Autism in mind but also prescribed for Traumatic Brain Injury patients - concussions, brain bleeds, and hemiplegic patients. Brain Power Incorporated makes a set of lenses for patients with autism. It's highly likely that if you have hemiplegic migraines one of these lenses will also make your brain feel safer. Another company makes similar lenses but I don't remember the name.

Wear hoodies or hats that will help shield from light. If you have a favorite hoodie, even better.

Audio Protection

Music legitimately relaxes our brains, allowing it to heal and process things quicker. I enjoy all music, and everyone should have one song that makes them undeniably happy. It's whatever song first came to your mind when you read that previous sentence 😂. Don't go doubting yourself for years like I did 🤣. No shame on any song.

I suggest getting high fidelity headphones or earbuds. Tune the EQ settings to sound bath / calming presets. I would recommend Googling the model of headphones you have with the addendum Calming EQ Settings. Music might very well be the best defense against hemiplegic migraines.

You don't want to always be plugged in, you can get ear plugs. I would recommend the Loop Switch 2, as they let you adjust the level of noise cancellation in each ear.

Nausea Protection

This is a Catch 22. If you start feeling nauseous, oftentimes you don't want to eat. The nausea may be a sign that you need to eat. Drink some water and try nibbling on something light to start. If you can handle something like eat something else that you really enjoy. Food heals the soul. If her brain is happy eating something it's going to let us eat it.

Mint boom boom sticks really help with nausea, as well as ginger chews and ginger tea.

If marijuana is legal where you're at, I know marijuana helps a lot of people with nausea.

Breathing

Breathing is one of the body's best central nervous system regulators. Deep breaths can often stop a hemiplegic migraine episode in its tracks. They also sell portable air in cans that may help during a migraine episode.

Rest

Be gentle on yourself. If you start getting a migraine episode, lie down on a comfortable surface where you are safe from falling and place your head on something to cushion it and elevate it as well as elevate your legs. Put on some music and make the room dark.

Medication

These migraines are so painful that common pain medication is frequently ineffective for people with hemiplegic migraines. For topical pain, a local pharmacy was able to make me a prescription compound cream with lidocaine, diclofenac, and Gabapentin.

If you experience any of these symptoms before getting diagnosed with hemiplegic migraines, or know anyone that does, make sure they are never prescribed a triptan. Triptans could lead to death for people that suffer from these migraines.

Adderall XR actually really helps me with the brain fog. Sometimes, it gets prescribed to TBI patients who don't have ADHD, to help with clarity, mental fog, and energy.

Over the counter medication you can take into consideration are Bayer Back and Body. It's like magic. Dollar Tree sells an equally effective generic version. Also, Biofreeze and Voltaren gel as topicals. Also, lubricating eye drops, like Refresh.

At the end of the day , the goal is simple . Make sure your brain knows it is safe. Make sure you have quick access to things you can use immediately that you already enjoy. , I had to figure all of this out mostly without the help of medical providers. The list isn't perfect, but I hope it helps someone not feel trapped in their own mind.

#ShowLoveSpreadLove