Headache

I'm always hesitant before I'll ask for a 2nd pain pill. I almost never need a 2nd dose of tramadol... except for today. When I woke up the immediate pain was brutal. My head was pounding and subsequently my eyes were hurting like hell. And my SI joint and lumbar spine are trash.
I asked Pauley what time I took tramadol today. She looked online and realized I had gone 13 hours without meds. Whoops. So she gave me 2 more tramadol. I probably need a migraine pill.
I'm gonna message my headache specialist and let her know that even on quliptra I'm having brutal migraines from the moment I sit up in bed. I think it's time to try infusion.

Hi everyone! 👋

I've been suffering from migraines for more than 10 years. My main triggers are stress, bright lights, heat, and strong smells. During an attack, I experience a severe headache, neck pain, and sensitivity to light. Sometimes, it becomes so bad that I need to lie down in a dark, quiet room.

#Migraine
#MightyTogether

Today I had to stay home since I feel so tired... even though I slept a whole 10 hours. Anyone have any advice so I don't need to stay home tomorrow? Also I have a horrible headache and no appetite. I haven't had an official diagnosis on POTS, but I have the feeling that I do have it. #PosturalOrthostaticTachycardiaSyndrome

Epilepsy is a neurological condition that affects the brain & causes recurrent seizures.

What is Epilepsy?
Epilepsy occurs when there is abnormal electrical activity in the brain. It can affect anyone-----children, teens, & adults.

Common Signs
brief staring spells, uncontrollable movements, stiffening or jerking, loss of awareness or confusion, emotional or sensory changes

Types of Seizures
Focal Seizures----affect one part of the brain
Generalized Seizures----affect both sides of the brain
Unknown Onset----when the start is not known

How You Can Help
be kind & understanding
don't judge what you don't understand
learn & educate others about epilepsy
support inclusion & acceptance

I Have Epilepsy it can also mean I Might
1 Feel extra tired or need more rest
2 Have memory or concentration challenges
3 Experience anxiety or mood changes
4 Need time to recover after a seizure
5 Take daily medication with side effects
6 Have headaches or brain fog
7 Feel sensitive to stress or lack of sleep
8 Need more support understanding or managing triggers

Types of Seizures---know the type---expect the signs-----give the best care

Two Main Categories
Generalized Seizures----affect both sides of the brain
Focal Seizures-----affect one area of the brain from the start

Generalized Seizures Include

1 Tonic-Clonic (grand mal)---aura may occur, then the loss of consciousness, whole body stiffening (tonic) followed by rhythmic jerking (clonic). Last 1-3 minutes------postictal sleepiness & confusion

2 Myoclonic-----sudden, brief, shock-like jerks of a muscle or group of muscles. No loss of awareness (usually).

3 Absence (petit mal)----blank stare, brief loss of awareness, often looks like daydreaming. It last 5-15 seconds & often goes unnoticed

4 Atonic---sudden loss of muscle tone causing falls or dropping of the head. Risk for injury

Focal Seizures Include

1 Focal Awareness Seizure (previously "simple focal")------aware & alert during the seizure, sensory or motor symptoms, may see, hear, feel, or smell something unusual, aura may occur, no loss of consciousness. Stays aware-----symptoms depend on the area of the brain affected.

2 Focal Impaired Awareness (previously complex focal)----impaired awareness, altered behavior or thinking, may stare, mumble, or repeat movements, no memory of the event-----not fully aware-----lasts seconds to minutes

Warning Signs Before A Seizure
sudden confusion, tingling sensations, strange smells, headache, dizziness, blurred vision, anxiety or fear, nausea

Seizure Safety Tips
1 Take your medicine regularly, on time everyday
2 Use the back burners & turn pot handles away from you when cooking on the stove
3 Stay hydrated. Drink plenty of water.
4 Remove sharp or dangerous objects away from the bed
5 Wear protective clothing while playing sports or biking
7 Avoid ladders or heights
8 Have someone with you while swimming & take showers instead of baths
9 Educate your family & friends on seizure first aid

Seizure First Aid
stay calm, protect from injury, turn on side, time the seizure, do not put anything in the mouth, call 911 if seizure lasts 5 minutes or longer

Epilepsy Awareness
Don't underestimate me because I have epilepsy. I can still work hard, go to school, exercise & stay fit, have a career, travel the world, enjoy hobbies, love & be loved, achieve my goals, live my life.............I am capable.........I am strong

Epilepsy Strengths
resilient & strong
self-aware & adaptable
deep understanding of their body
empathetic & compassionate
determined & persistent
growth through challenges

Facts about Seizures & Epilepsy
1 You can't swallow your tongue during a seizure
2 Never force something into the mouth of a person having a seizure
3 Don't restrain someone having a seizure
4 Epilepsy isn't contagious
5 Anyone can develop epilepsy
6 Most people with epilepsy can do the same things as people without epilepsy
7 People with epilepsy can handle jobs with responsibility & stress
8 Epilepsy can't be cured
9 Epilepsy isn't rare
10 You can die from epilepsy
11 Each person's seizures are different
12 People with epilepsy are usually not physically limited

Welp ok.
I saw my headache specialist this morning. I've been using ajovy for the last 4 months but it hasn't been working. So I'm stopping ajovy and I'll be starting quilptra but if it doesn't work or if my insurance won't cover it, we'll try quarterly infusions.
I told her I didn't take my pills this morning cuz I wanted her to see me during a flare. She looked at me and said migraine can't be seen. I felt stupid.
As we were waiting I took a Norco cuz my right hip is doing its own thing and the pain is at 8. My migraine was mild when we got home but now I've got double vision, pain in both eyes, and my temples are throbbing. But fuck me my lumbar hasn't been this bad in months.
I've got another appointment tomorrow with derm to see if we can drain the lump on my head. It's hard so I don't think it can be drained. But the problem is my dermatologist decided to take the rest of the year off so I'll be seeing some other doctor. And I doubt my face will clear up by tomorrow so I'm going to ask about soap free acne meds. It's crazy but I'm allergic to most soaps.
My left ear hurts so much! Every few minutes I get a stabby sharp pain.
So I had lunch when I got home cuz the package from yesterday was on the shelf by my door. I'm trying to find easy food. When I'm really sick I either age regress and want Mac n cheese or I go into puppy headspace and I want cheesy puppy treats. Well both of those things can be met with one food... Paw Patrol easy Mac! How freaking awesome is that?!?! It's super yummy.
I made another #coffeeadventures today. Half scoop of blueberry crumble flavor protein coffee plus half a scoop of hazelnut flavor instant cappuccino mix, one splash of oatmeal cookie flavor creamer and I filled half with almond milk and half water. I added 3 drops of sucralose for gentle sweetness. It's so yummy! It's my 2nd favorite flavor blend. I'm still waiting for the vegan protein powder so I can make my version of a really amazing PSL with pumpkin pie flavor protein powder and some chocolate hazelnut flavor protein coffee. It's ridonkulously delicious. I know people are getting tired of talking about coffee. I don't have much except coffee and medical appointments and comic books. I don't have much experience with going out for fun activities except for Canterbury Village . I'm trying to schedule a trip to a local cider mill with some new local friends.
I've got one good bit of news. I just found out that my neurosurgeon got the MRI that shows the SEL regrowth and the new stenosis. Now I wait for him to look at the record. Fingers crossed.

Getting over a cold or some such bug that has led to sore ribs from the serial coughing fits I've had to endure. This has also led to a headache, made worse by fluid loss for various reasons (the coughing, the sneezing (projection of water droplets into the atmosphere), blowing my nose, having a continuous runny nose at other times, sweating and a raised temperature - think of a kettle and steam).

Fuck. Today is the 4th day of at least an 8 out of 10 migraine. I need to call my headache specialist cuz my meds don't work anymore.
Anywho. I had a very good #coffeeadventure . I mixed amaretto flavor coffee with pumpkin pie flavor protein powder and a splash of pumpkin spice flavor creamer and then I topped it with some chocolate syrup and some milk. It's quite delicious.
Pain just knocked me on my ass. I can hardly walk and I need to go wake up Pauley for meds. Dammit.