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@freemental9242

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!

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Replies to "Desperate for Answers – Persistent chronic Headache, Red Ears, and Nausea with No Diagnosis - Thanks..."

@freemental9242
Did you ever have MRIs of your head/brain and neck/cervical spine? What did they show? Your symptoms do sound neurological/central nervous system/nerves in neck/head (like cranial nerves).

When the surgery was done for your nasal polyps and deviated septum, did they injure something or bend your head/neck in a way that compressed nerves/spinal cord?

Did you have a Covid vaccination before October 2023? What symptoms did you get after vaccination and which vaccines did you get?

Have they checked your vascular supply in neck and head to see if there is any blockage of blood flow?

I had daily headaches for years and no one diagnosed me properly. I finally was diagnosed with cervical spondylotic myelopathy which was compresssion/flattening of my spinal cord at C5-C6 which impacted blood flow to my brain and communication in my central nervous system from brain to body/body to brain. After ACDF surgery, my daily headaches went away. Before surgery l, when I got my 2 covid vaccines in 2021, I got pain at the based of my skull and felt dizzy/lightheaded immediately after receiving each of the injections.

Have you ever had an injury working out or lifting weights that could have impacted your cervical spine? Were you ever in a car accident/rear ended/whiplash.

@freemental9242

What sticks out to me is your Septoplasty/Polyp removal surgery you had in October 2023.

Not sure what your symptoms were prior to the surgery and or what the decision was based off of.

Assuming at 23 yr old first tech job had great commercial insurance which, when you visit any surgeon you have to be careful of why you are recommended elective surgery to begin with.

Do not rule out your surgery as the cause as many nerves and pathways are altered in this surgery that you would never think about. Trigeminal nerve being the main.

Hopefully your ENT surgeon has been helpful in guiding you through this since symptoms set in 2 months post op.

A surgeon will never say that surgery is the cause of something you have developed afterwards, so don’t put to much weight on that.

Are you positive your surgery was just septoplasty and polyp removal? Any turbinate tissue/bone removal involved as well?

What was your maximum medical therapy before your surgery was recommended?

Where do you live and are you going to a Headache Center who deals only in headaches? Seems you have tried all that I have. It's 5 yrs/3 mos for me with a headache every single day all day. It's debilitating. I am sorry for you and hope you can find an answer. Don't give up. Keep searching.

Before I was diagnosed with sleep apnea and went on a C-pap I had headaches every day. The C-pap cured that. I still get regular headaches and migraines, but it is definitely not every day!
Do you snore? If so, I would request a sleep study to be done.

Hello fellow migraine sufferer. I’m 64 and have had chronic severe migraines and daily tension headaches for 45 years. Like you I’ve tried everything. Hundreds of more medications, too many to list. Acupuncture, chiropractic, TENS unit, hospitalized at a world renowned clinic at least 7 times, special diets, nerve ablation and finally a pain specialist put me on methadone and started using Botox injections that have helped me for over 6 years without the methadone. However, I’m now experiencing breakthrough headaches that aren’t responding to my migraine medication Amerge of which I can only take 10 per month. I’ve just been researching a surgical procedure called the Reed Procedure that has a 80% success rate. However it’s only performed in Dallas, Texas. I’m obtaining more information now. Best wishes to you. I’m on permanent disability because of the migraines.