Constant Pain in Head - Never goes away - No answers

Posted by cmwatkins98 @cmwatkins98, Dec 8, 2025

Hello, I hope all of you are doing well. I have read through many of the posts and can sympathize with so many of you going through these tough situations. My thoughts and prayers are with all of you.

I have been dealing with constant pain in my head for the past 2 years now. The pain is there 24/7 and never goes away. The only thing that helps at all is using a cold compress wrap around my head but even that provides minimal relief. It is a pulsating pain that makes it feel like there is something crawling around in my head along with tightness, primarily in the back of the head and upper neck. It seems to radiate through the back and top of my head and behind my ears. I have also noticed some blurred vision and difficulty with concentration.

I started by seeing a Neurologist that diagnosed New Daily Persistent Headache (NDPH) and treated it as migraine. I have tried a couple of different migraine meds that have not helped at all, one injection and one oral med. We then moved to trying Botox treatments but those also failed to provide any relief.

I saw a second Neurologist and a Pain Specialist who thought it was Occipital Neuralgia and possibly Dystonia. We tried nerve block injections and more Botox, both of which did not have any impact on the pain. I recently had a CMBB injection to see if it might make sense to do some sort of ablation but that too was unsuccessful as the numbing meds did not work with the first injection. To date, I have gone to see an ENT doctor, tried Chiropractic and Acupuncture, a Psychiatrist, etc. I have also had MRIs of both my head and cervical spine which did not show anything.

Nothing has worked and I still have this pain 24/7. I stopped calling it a headache and started referring to it as pain in my head because I am not sure that it is actually migraine related. It is very difficult to concentrate for more than a few minutes at a time. I can sometimes ignore the pain for short periods but overall I am finding life very difficult. I am sure I have missed some of the other things that I have tried thus far but I feel like I go to appointment after appointment with no answers. Each time I get my hopes up that the next thing will work only to get the let down when it doesn't. I was referred to yet another Neurologist/Headache Specialist but my appointment is 6 months out.

Just hoping that maybe someone here can provide some ideas. While I wouldn't wish this on anyone, this seems like a forum of others who have been suffering through similar issues so thought I would post here. Any thoughts would really be appreciated.

Interested in more discussions like this? Go to the Headache & Migraine Support Group.

Profile picture for beachlife67 @beachlife67

You have written exactly what I’ve been going through for over two years! In addition I had a first ever Vertigo episode 10 months ago, and since have been struggling with feeling off balance, dizzy, lightheaded, and disoriented when in busy or unfamiliar places. Test results don’t show anything. I wish I had an answer or suggestion for you, but everything I’ve tried has not worked. If you find a solution, please let me know!

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@beachlife67
Hello, may I ask, did you try Aimovig before? It was working so well for 6 months but not so much anymore and my Neurologist has suggested changing to Emalvy (sp?)

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Profile picture for ellenblythe @ellenblythe

@beachlife67
Hello, may I ask, did you try Aimovig before? It was working so well for 6 months but not so much anymore and my Neurologist has suggested changing to Emalvy (sp?)

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@ellenblythe
The only migraine med I’ve tried is Qulipta. Wasn’t bad the first month, not sure it really helped all that much, but I started getting chest tightness and felt like I couldn’t take a deep breath.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@beachlife67 - welcome to Mayo Clinic Connect. I'm so sorry you've had this constant head pain plus vertigo-related issues.

Was there any incident that precipitated these symptoms you're experiencing?

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@lisalucier
I had an intermittent pain behind one ear for several months and was advised to go to an ENT. At that appt. the doctor while feeling my neck, stuck her fingers in deep and caused lightening bolts of pain in my neck. This started nerve burning attacks and zaps all over my face that then moved into my head within 2 months, and everything has gotten worse ever since. I rarely even had headaches before all this.

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I have had head pressure"tight band"(occipital -temporal areas "squeezing" sensation, with neck stiffness tight shoulder, bilateral upper arm muscle aches along with facial jawline numbness for 9 months now, I have had all diagnostics, MRIs CT scans LPs accupuncture PT nerve block injections medications, many with no relief @ all. Pain is constant, never goes away. It "rules" my life. I am @ a loss where to go from here. the medications have so many side effects making me feel worse. I am 81 yrs old and had an active social life prior to this. Hoping someone finds relief to this and will share.

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I can relate to all you write about see my post below, I keep researching info and seeing new docs, takes a long time to see new docs very frustrating. I will definitely post if I am able to get any answers.

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