Does anyone have daily persistent headache all day, every day?

I have had headaches all my life! They’ve now turned into migraines. Hormonal migraines were the worst. Now those are na (menopause and hysterectomy). I had a tumor mengianoma encased around my carotid artery. Most of it was removed thru my sinuses. This started my daily chronic intractable migraines. I had a second craniotomy for removal of another tumor. Since, I’ve had Botox 3x no help. Transfusions, nerve blocks and ablations. They removed a plate from my head that was sitting on my nerves. Multiple meds and doctors. A cut trimeg nerve. NOTHING helps! Not even my rescue meds! I’m so over it!! I’m in Arkansas so not a lot of specialists here. I can’t work can’t function most days! This is no way to live! I’m desperate!!! Not living just being!!

I'm sorry, but I sure understand. I have been just surviving. Don't do much but doctors and lay on the couch.

I had daily headaches, ringing in ears, dizziness, back/shoulder/neck pain, weakness in arms, nerve pain/rashes on face (usually triggered by stress/dental work and think tied to trigeminal nerve/latent virus reactivation), brain fog, difficulty concentrating, etc. My daily wake up headaches have gone away after treatment for iron deficiency (needed more involved iron panel bloodwork done to show it), sleep apnea (using cpap now), cervical spondylitic myelopathy injuring my spinal cord (ACDF surgery at C5C6), Hashimoto’s thyroiditis/lobectomy for nodule removal/hypothyroid Rx, and breast implant illness (implants removed). Everyone has their own constellation of symptoms and it takes perseverance to find doctors who will listen and help diagnose/treat you to help make your quality of life better. Best wishes to you in finding the right doctors to help you.

Did they do a ferritin test to determine low iron?

Yes, I had the following tested:

Serum iron. This test measures the amount of iron in your blood.
Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.

My primary doctor did not do a full panel (CBC was “normal”). I took myself to the hospital when I felt like I was going to collapse from extreme fatigue. The blood work showed iron deficiency. I had the following symptoms but my doctor never checked using an iron panel.
Tiredness
Dizziness
Weakness
Headaches
Pale skin
Fast heartbeat

Have you checked to make sure there’s not something in your house that might be causing that ?

Yes, I did that many years ago when this all started.

I was having daily migraines for months. My doctor found a med that works on me for them Rizatriptan. Never had an explanation just med after med given and tried to find one that worked. Well, they inexplicably left like they came, suddenly. I do get them on and off now. Anyway, after they left I developed other problems. I wonder if any of it is related. Anyway, I hope you find something to help you. Gel ice packs on area that hurts (in a tube sock), eye mask, quiet and dark help ease it. Keep hydrated. Some say caffeine as a vasodialator can help them others say no. It’s helped at times and at times i just make sure I drink water and Gatorade. Need to keep electrolights balanced. Feel better.

Thank you.

Desperate for Answers – Persistent chronic Headache, Red Ears, and Nausea with No Diagnosis - Thanks for responding!

I hope this finds you well,

I’m a 25-year-old (formerly active) man who has played sports at a high level my whole life. I graduated in 2023 and started an IT job in September. However, in December 2023, I suddenly woke up with a chronic headache and other strange symptoms, and since that day, it has persisted. Now, I’m unable to work and struggle to cope with simple daily tasks. I’m posting here because I’m truly desperate for help and am hoping someone out there has experienced something similar and can offer advice or suggestions!

This text is quite long, but PLEASE bear with me, it would mean a lot to me if you have any thoughts about my situation. I would really appreciate any comments related to this!
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Impact on My Life:

This condition has taken over my life—I can’t work, and even simple daily tasks are challenging. Just taking a walk can make my symptoms worse. I find it really strange because I eat clean, stay in shape, and have no history of any sickness in my family.
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My Symptoms:
-Constant headache: Started suddenly one night and hasn’t let up in over a year. No previous history of headaches. I’ve seen multiple neurologists, and some say it’s simply unexplainable pain that may go away over time, but I’m struggling to just “wait it out” with no improvement. The pain is always a 6/10 but gets worse with my triggers.
-Red, warm, and painful ears: They become super hot, red, and painful every night or when I lay down. My jaw can also get warm simultaneously.
-Nausea: This can get quite intense, especially when driving, taking public transport, or being in motion.
-Pulsing sensations: My neck, sinuses, and behind my eyes pulsate, yet doctors say my pulse is normal.
-Neck: My neck and throat feel stiff and sore; my voice has become weaker with more frequent voice cracks.
-Jaw pain: My jaw is sore, clicks, snaps, and gets very warm. I do grind my teeth in my sleep but have tried Botox and sleep with a mouthguard. My teeth and gums can feel tight and sore
-Blurred vision and dizziness: Difficulty focusing with my eyes, reading, and being on screens. I’m also sensitive to bright lights.
-Ear pressure: I get a "dot" feeling in my ears when my heart rate increases or when I open my mouth. It clicks, and I get the same feeling as when I’m on a plane. My ear passage can also get very itchy.
-Migraine attack?: I’ve only had one extreme episode (possibly a migraine attack?) with intense nausea, clogged ears, vomiting, racing heart, and difficulty speaking; it lasted 2-3 days, and I struggled for a week after. Leading up to this, I tried pushing it a little bit physically (swimming and going to the gym). I learned that I should not do that anymore.

-Triggers: Symptoms worsen with any physical exertion (strength training, running, even slow walking), being in motion (like public transportation, driving, etc.), bright lights, stress, and prolonged screen use. It often worsens a few hours later, so I become much worse the following night.

Oddly enough, alcohol seems to provide temporary relief, both on the night I drink and the day after.
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What I’ve Tried and Ruled Out:
Medications: I’ve tried an extensive list of medications, with no success:
-Ajovy (fremanezumab-vfrm), a migraine prevention medication.
-Otomize Ear Drops (U.S. equivalents: Ciprofloxacin-Dexamethasone or Cortisporin Otic) for ear pain.
-Isoptin (Verapamil), a calcium channel blocker sometimes used for headache prevention.
-Indometacin (Indomethacin), a strong anti-inflammatory.
-Botox injections for both migraine protocol and jaw/ear areas.
-Lymecycline (Tetracycline), an antibiotic.
-Amitriptyline, an antidepressant also used for chronic pain and headache prevention.
-Metoprolol, a beta-blocker sometimes used for migraine prevention.
-Neurontin (Gabapentin), used for nerve pain and as an adjunct for migraines.
-Candesartan, an angiotensin receptor blocker (ARB) for migraine prevention.
-Paracetamol (Acetaminophen), a common pain reliever.
-Ibuprofen (NSAID pain reliever).
-Prednisolone, a corticosteroid for inflammation.
-Azithromycin (antibiotic).
-Phenoxymethylpenicillin (Penicillin V), another antibiotic.
-Sleeping with a mouthguard.
-Blood tests are normal.
None of these have provided any relief.
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Specialists I’ve Seen:
I’ve consulted with multiple specialists, but no one has found a clear cause or effective treatment for my symptoms. Here’s a list:

-Multiple neurologists
-ENT specialist (ear, nose, and throat doctor)
-Psychologist
-Dentist
-Jaw specialist
-Physical therapist
-Chiropractor
-Rheumatologist
-Cardiologist
-Eye doctor
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Recent Medical History and Background:
October 2023: I had surgery to correct a deviated septum and remove nasal polyps under general anesthesia.
November 2023: Contracted COVID-19 and was quite sick for a while.
December 2023: Headache and other symptoms began and have persisted ever since.

Additionally, October through December was an extremely stressful period for me, with both work-related pressures and significant stress in my personal life. I’m unsure if this stress played a role, but I wanted to include this in case it’s relevant.
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Current Theories from Specialists: (just theories)

-Long COVID: I am vaccinated but have become quite ill every time I have caught it or been vaccinated.
-New daily persistent headache (NDPH)
-Atypical migraine
-Stress-related chronic headache
-Red ear syndrome
-Erythromelalgia
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Why I’m Posting:

I’m hoping someone here has faced similar symptoms or knows of treatments I might not have tried. I would be incredibly grateful for any suggestions, shared experiences, or tips—any insight means a lot!

Thank you so much for taking the time to read this—I’m open to any and all advice.

Thanks again, and have a great day!