u/xjonny49x01

The last week has been especially rough because of very extreme fluctuations:

• Yesterday I went to bed with almost no pain. It felt like it was finally getting better — I even had the feeling that I was almost “healed”.

• This morning I woke up with a strong, diffuse, strange feeling covering my entire left side of the head.

• It pulls quite strongly to the left ear when swallowing, and sometimes even a bit down into the neck.

• I also get a weird, numb or “off” feeling in my right upper teeth/jaw at times.

• The pain can switch from almost nothing to very present within hours or from one day to the next.
• Some moments it feels diffuse and “not real”, other times more localized again.

It feels like my nervous system is extremely unstable right now. The left-sided symptoms and the strong day-to-day (and even within-day) changes have become much more intense in the last week.

Has anyone experienced something similar with ON + strong central sensitization?

Especially:

• Very big fluctuations within short periods of time
• Pain almost disappearing one evening and coming back strongly the next morning on the opposite side
• Referred symptoms moving around (ear, teeth, neck when swallowing)

I would really appreciate hearing if others have gone through these kinds of intense swings. It’s mentally quite exhausting.
Thanks in advance.

Do you also have persistent pain, for example, a coin-sized area that constantly feels dull and throbbing?

Or pain that sometimes changes location?

My name is Jonny, I’m 24 years old and I have been dealing with severe head pain since mid-August 2024.

It started with sudden, attack-like episodes of an extremely intense, boring/drilling pain exactly at the top right of my head (just beside the vertex), feeling like a coin-shaped spot. The attacks came with heart racing, panic, light and sound sensitivity, nausea and the feeling I was going to die. From August to mid-November the episodes were sporadic but became more frequent. Since the end of November 2024 the pain has been constant and daily, though the intensity still fluctuates.

I tried chiropractic care and Shiatsu massage. Pressing the right atlas (C1) or suboccipital muscles immediately reproduces the exact coin pain upward. Lying down or resting clearly improves it, while standing, walking, shopping or any physical activity makes it significantly worse. Pregabalin (up to 400 mg) brought almost no relief and was slowly tapered off by the end of March 2026. I also had a vagus nerve stimulator for 3 weeks with only minimal and temporary effect.
In April 2026 I went to Salzburg to see Dr. Russe. Using Doppler ultrasound she found a pulsating blood vessel pressing directly on the nerve exactly at my pain spot. She performed a diagnostic local anesthetic nerve block (like a dental injection). Since that injection my symptoms have changed dramatically:

• The sharp “coin” pain became much more diffuse.
• I now feel a constant helmet-like pressure over the entire right half of my head (sometimes spreading to the left).
• The pain location wanders – sometimes more left-sided or at the back of the head.
• New referred symptoms appeared: pulling sensation in the upper teeth, ear pressure and pulling when swallowing, occasional left nasal congestion.
• I have frequent sudden waves of depersonalization (“I don’t feel real”), dizziness, heavy shoulders/neck, panic attacks and vegetative symptoms (heart racing, near-fainting, vomiting) that come out of nowhere.
The current plan is occipital nerve decompression surgery. Dr. Russe wants to make three small incisions (top of the head over the original coin spot, behind the ears and at the back of the head) to release the compressed nerve and the pulsating vessel.

In my opinion – this is not a pure nummular headache (NKS). The mechanical reproducibility from the neck/atlas, the clear positional dependence, the referred pain to teeth/ear and the vessel-nerve conflict found on Doppler all point strongly to occipital neuralgia / cervicogenic headache with marked central sensitization. The diagnostic block seems to have further irritated the already sensitized nerve system, which explains the worsening and spreading of symptoms.
I am currently unable to work (I’m an installer/plumber) and my whole life is on hold. I really hope the planned decompression surgery will finally give me my life back.

What's your thoughts?

Greetings Jonny

My name is Jonny, I’m 24 years old and I have been dealing with severe head pain since mid-August 2024.
It started with sudden, attack-like episodes of an extremely intense, boring/drilling pain exactly at the top right of my head (just beside the vertex), feeling like a coin-shaped spot.

The attacks came with heart racing, panic, light and sound sensitivity, nausea and the feeling I was going to die. From August to mid-November the episodes were sporadic but became more frequent. Since the end of November 2024 the pain has been constant and daily, though the intensity still fluctuates.

I tried chiropractic care and Shiatsu massage. Pressing the right atlas (C1) or suboccipital muscles immediately reproduces the exact coin pain upward. Lying down or resting clearly improves it, while standing, walking, shopping or any physical activity makes it significantly worse. Pregabalin (up to 400 mg) brought almost no relief and was slowly tapered off by the end of March 2026. I also had a vagus nerve stimulator for 3 weeks with only minimal and temporary effect.

In April 2026 I went to Salzburg to see Dr. Russe. Using Doppler ultrasound she found a pulsating blood vessel pressing directly on the nerve exactly at my pain spot. She performed a diagnostic local anesthetic nerve block (like a dental injection). Since that injection my symptoms have changed dramatically:

• The sharp “coin” pain became much more diffuse.
• I now feel a constant helmet-like pressure over the entire right half of my head (sometimes spreading to the left).
• The pain location wanders – sometimes more left-sided or at the back of the head.
• New referred symptoms appeared: pulling sensation in the upper teeth, ear pressure and pulling when swallowing, occasional left nasal congestion.
• I have frequent sudden waves of depersonalization (“I don’t feel real”), dizziness, heavy shoulders/neck, panic attacks and vegetative symptoms (heart racing, near-fainting, vomiting) that come out of nowhere.
The current plan is occipital nerve decompression surgery. Dr. Russe wants to make three small incisions (top of the head over the original coin spot, behind the ears and at the back of the head) to release the compressed nerve and the pulsating vessel.

In my opinion – this is not a pure nummular headache (NKS). The mechanical reproducibility from the neck/atlas, the clear positional dependence, the referred pain to teeth/ear and the vessel-nerve conflict found on Doppler all point strongly to occipital neuralgia / cervicogenic headache with marked central sensitization. The diagnostic block seems to have further irritated the already sensitized nerve system, which explains the worsening and spreading of symptoms.

I am currently unable to work (I’m an installer/plumber) and my whole life is on hold. I really hope the planned decompression surgery will finally give me my life back.

What are your opinions on this?