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Sensitive to touch nerve pain in head - sinus related?

Posted by beats32 @beats32, Feb 28, 2024

I've been experiencing the strangest nerve sensation in my head since July 2023. The lightest touch is uncomfortable, but when I apply more pressure, it starts to feel better. If I leave it alone for a few minutes and lightly stroke the area again, highly sensitive pain is triggered again. When it's not being touched, it's typically just a dull ache. It is uncomfortable to wash and brush my hair, sleep on that side, wear a hat, put on a shirt, etc. The spot is about the size of a quarter, above and slightly behind my right temple. I also experience intermittent right ear fullness and ringing, pressure (right side only), some discomfort around my cheekbone and at times, slight numbness around my cheek/under my eye. The pain seems to be exasperated with barometric pressure headaches or any type of sinus discomfort.

This certainly has become an annoyance, but it hasn't gotten any worse or better in 8 months. I've had a head CT scan and a brain MRI with and without contrast. I've seen a wonderful neurologist who spent a significant amount of time reviewing my scans, results, and completing thorough exams testing all of my neurological functioning. He's pretty much ruled out anything serious, says it doesn't present like typical trigeminal neuralgia, occipital neuralgia, or anything similar. Of note, my MRI results mentioned a deviated septum on the right side with several blood vessels of anatomical variation in the area of my maxillary nerve.

Could this be a sinus issue related to the deviated septum? I feel like my next stop should be an ENT. I would greatly appreciate any insight or advice. For reference, 37 year old female, healthy, no bad habits, no previous head injuries, etc.

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beats32 | @beats32 | Mar 4, 2024
In reply to @nrd1 "@beats32 - I had this same experience at your age. Stay away from ENT. Occipital muscle..." + (show)
@nrd1

@beats32 -

I had this same experience at your age. Stay away from ENT.

Occipital muscle tightness, tight neck flexors, forward head posture, masseter tightness. Your trapezius/SCM muscles are probably tight and you don’t know it. This radiates into your jaw/ear/face and can feel like sinus pain.

See a PT and work on stress management/muscular tightness.

*I am not a doctor. But this area crosses over into many specialist areas. ENTs are often seen due to pain referrals here. Be careful.

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This 100% makes sense. I know my neck and traps are tight and I get frequent tension headaches. I'm going to go the PT route. Thank you!

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vsharp329 | @vsharp329 | Feb 24 9:44pm

Hi! I am going through the same thing and had all kinds of tests done and found nothing. It isn't giant cell arteritis as I had gotten scared it was and ran to the ER. They said my face would have a rash/swelling and I didn't. Did you ever find3 out what that was and did it go away?

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1 reply
beats32 | @beats32 | Mar 1 10:18am
In reply to @vsharp329 "Hi! I am going through the same thing and had all kinds of tests done and..." + (show)
@vsharp329

Hi! I am going through the same thing and had all kinds of tests done and found nothing. It isn't giant cell arteritis as I had gotten scared it was and ran to the ER. They said my face would have a rash/swelling and I didn't. Did you ever find3 out what that was and did it go away?

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I saw the director of the facial pain clinic at Mass General Hospital who said it sounds like small fiber neuropathy. There's an excellent facebook support group for SFN that I suggest you join! That's the most info I've been able to get from doctors, but the support group has a ton more information.

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camellia19 | @camellia19 | Mar 17 8:33am

@beats32 @vsharp329 Did either of you ever learn anything more about this? I have been experiencing the same thing four about 4 months now. 42 year old female, otherwise totally healthy. PCP has done bloodwork including SED rate and all is normal. Saw ophthalmologist and optometrist to rule out any eye issues (sometimes I have dull pain/pressure behind by right eye). Saw an ENT and he didn't see anything crazy but am scheduling a sinus CT as next step. Would love to hear if you found out anything else! Also, what is the name of the FB group you recommended? Thank you!

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1 reply
beats32 | @beats32 | Mar 18 10:37am
In reply to @camellia19 "@beats32 @vsharp329 Did either of you ever learn anything more about this? I have been experiencing..." + (show)
@camellia19

@beats32 @vsharp329 Did either of you ever learn anything more about this? I have been experiencing the same thing four about 4 months now. 42 year old female, otherwise totally healthy. PCP has done bloodwork including SED rate and all is normal. Saw ophthalmologist and optometrist to rule out any eye issues (sometimes I have dull pain/pressure behind by right eye). Saw an ENT and he didn't see anything crazy but am scheduling a sinus CT as next step. Would love to hear if you found out anything else! Also, what is the name of the FB group you recommended? Thank you!

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Hi there! No change on my end. Still have the exact same sensation, same spot. When I'm sick or my sinuses are flaring up it's worse, but other than that it's been pretty consistent going on two years now. I've learned that viruses can live in your trigeminal nerves, and there are studies being done that are showing how covid is impacting the CNS longterm. My doctor also shared a study with me that discussed how having covid, or even the vaccine, was reactivating dormant autoimmune disorders (I have lyme disease). Here is the FB group: https://www.facebook.com/groups/239090105583

I hope this helps!

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@seekinginfo | @nrd1 | Mar 19 4:09am
In reply to @beats32 "Thank you. I'll reach out to my neurologist's office and see if they can order the..." + (show)
@beats32

Thank you. I'll reach out to my neurologist's office and see if they can order the TDUS. GCA sounds scary/serious. Is it common in younger adults? I'm 37. Treatable? I try to stay off Google because everything is cancer or an aneurysm. It's the strangest sensation - initially very sensitive to touch, but the pain steadily subsides until it's gone. This happens every time until I leave that area alone then do it again, and the same thing happens - initial shock/sensitive reaction, and I can almost slowly rub out the pain if that makes any sense. It's been this way for 7 months without getting any better or any worse.

I attached a comment I read on a Neurology forum that was the best description I've found from anyone else, as well as a diagram with red areas that indicate where the sensitivity is. I never have migraines, intense, sharp pain or any vision issues.

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@beats32 -

If you try to stay off Google then I would definitely stay off this forum, or you have health anxiety sufferers send you down a rabbit hole, no different than Google.

Muscular related referred tension headaches will not show on any type of test.
If you have eye strain, tight neck, shoulders it all can move up to your jaw and refer pain to your masseter and temple.

Start there as that is very common. Don’t think the worst and stay away from the rabbit holes.

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