Pain when pressing on artery near temple and head pressure

[Devin3800]

Hello,

I am a 23 year old male. For the past 9 months I have had an odd sensation of pressure and pain over an artery on my head near my temple above my right ear. The pain is worse is the morning and lasts all day. It can be sharp if I touch or palpate the exact artery. The pain has gotten worse since March this year.  I have had MRI of brain and cervical spine, CTA of head and neck, rigorous blood work (ESR, CRP, autoimmune antibodies (ACA, ANCA, RF, etc), lyme disease, CBC, vitamins), ultrasound of artery, lumbar puncture, and biopsy of inflamed artery near painful artery -> all tests were normal.  I have been to a headache clinic, neurology department at Mount Sinai hospital in NYC for 5 days, and to numerous neurologists, ENTs, primary care doctors, and one rheumatologist.

My exact symptoms are detailed below:
1. Dull ache on affected side of head near temple and around ear. Dull ache worsens when bending over or tilting head or leaning body to affected side.
2. Dull ache develops into constriction-like sharp pain when temporal artery is touched or pressed on. This sharp pain lingers after touching artery and worsens when tilting head to affected side.
3. Scalp tenderness (typical symptom I know).
4. Head pain worsens when lying down.
5. Pressure in forehead and in upper front and back teeth
6. Pressure behind nose near top and bottom of septum that worsens when bending over.
7. Pain in head when talking, chewing too hard, opening mouth to wide, and singing.
8. Throbbing head when lying down, heart beat moves whole body and head, very annoying.
9. Swishing noise with heartbeat in ear when lying down (pulsatile tinnitus?)
10. Pain in temple is relieved when pressing on artery in front of ear and stopping blood flow to superficial temporal artery above ear and in temple region.
11. Hurts to wear glasses
12. Fatigue in arms and legs
13. Stiffness and extra tiredness in morning
14. Tongue pain
15. 20 lb weight loss over 3 months

I have taken migraine medications (triptans, Depakote, botox, analgesic injections) with no relief. I have taken trigeminal neuralgia medications (oxycarbezepine, amitryptiline) without any relief. The pain is continuous and only subsides with high dose prednisone (>40 mg/day), which has been prescribed to me twice by my primary care doctor out of desperation. Doctors are hesitant to prescribe me steroids because of the serious side effects from them, but I cannot live without them because the pain is too severe when I don't take them.

Could this be some kind of strange migraine? Could this be temporal arteritis (since the artery itself is in pain) even though I am so young (23) and all my tests have been negative? I am at wits-end with the pain and no doctor seems to have any ideas what could be causing this mysterious pain and body symptoms for so long without ceasing.

Any ideas or similar stories anyone?

Thanks,
Devin

[HeshamAmmar]

Wow I have similar symptoms right now and had it since one year and a half. Almost exactly like my symptoms ( Not all symptoms though).

I also have same scalp tenderness with tight pressure at the back of my head and the artery near my ear pressures me as well, and the pressure increases when I wear glasses or look at a computer screen. ( My eyes also very sensitive ever since)

My doctors have no idea as well what's going on. I went to so many of them, although you have made much more scanning than me since I have never done MRI or CT.

However, your symptoms seem much worse than me.

Out of desperation I actually diagnosed myself since doctors have no idea and just decided it's some kind of tension headache that causes such symptoms since we are so young to develop any serious kind of nerve or artery actual damage.

Be notified that intensive physical exercises such as walking and running completely improved my condition during last year to the extent that I almost recovered completely. My medication at the moment is both intensive exercising and trying to free myself of stress and anxiety / overthinking since they worsen the condition of any sort of headache whatsoever.

I hope you have become better now. I am really sorry for you, but I know how you feel. It is very desperate situation.