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.

fourleaf | @fourleaf | Dec 8, 2025

October 2020 my 24x7 Headaches / migraine started.

Question – Did your neurologist mention if you have a tense neck?
My neurologist found I have/ had a very tense neck (causing tension headaches) and gave referral to Physical Therapy - Dry Needling. After first session, no headaches for the first time in years. The relief lasted 3-4 hours. As the weekly session went on, the relief increased. After 20 weekly session, I now go monthly. After hearing the positive result, my neurologist prescribed Baclofen 10mg 3x/ day (muscle relaxer). This was one piece of many to my issue/ symptom puzzle.

Neurologist also has prescribed Vyepti infusions (once every 3 months). After first infusions, head pain level of 8 down to 4, which increased to 6 after 30 days. The second infusion was positive just not as much as first. Note, neurologist had prescribed two Migraine Infusions earlier. They were very strong but didn't help.

I showed my neurologist some of my research (see link below) and she referred to Allergy and Immunology, who is now referring me to a Immunology Specialist. I started getting a gut feeling that my root cause was "cell level". Also, I learned Immunology does a different set of Lab Blood Work.
https://connect.mayoclinic.org/comment/1456372/
It's been a journey, Best wishes on your journey
🍀

gently | @gently | Dec 9, 2025

Have you had any imaging.

mikayla | @mikaylar | Dec 10, 2025

I can relate - 6 years/4 mos for me every single day/all day. No answers either. Had every imaginable test and medicine. I am sorry for us. Where do you live? Are you going to a headache clinic?

cmwatkins98 | @cmwatkins98 | Dec 10, 2025

In reply to @gently "Have you had any imaging." + (show)

@gently I've had CT Scans and MRIs done of both my head and cervical spine. Nothing there according to the docs.

cmwatkins98 | @cmwatkins98 | Dec 10, 2025

In reply to @mikaylar "I can relate - 6 years/4 mos for me every single day/all day. No answers either...." + (show)

@mikaylar Hello, yes it is so rough. Makes everything in life so much more challenging. It never goes away. I am in Ohio and have seen a couple of Neurologists here locally. I am also scheduled to go see another headache specialist at Cleveland Clinic soon.

mikayla | @mikaylar | Dec 10, 2025

In reply to @cmwatkins98 "@mikaylar Hello, yes it is so rough. Makes everything in life so much more challenging. It..." + (show)

My friend just went to Cleveland Clinic for 3 days of testing and they determined he had sleep apnea. He has had a headache for months. Now he will treat for that and see what happens. Good luck in Cleveland. Please keep us posted.

aska | @aska | Dec 10, 2025

My symptoms are exactly the same. I’ve been suffering for 5 months now and have just started Botox injections which so far have had no effect. Neurologist said to expect that when just beginning. I have had migraines most of my life but this every day occurrence is almost too much. I feel for everyone who has suffered for years. 🙏🏻

beachlife67 | @beachlife67 | 5 days ago

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!

duvaldena | @duvaldena | 4 days ago

I have the same issue. Constant head tension. Mine is due to ehlers danlos syndrome. My neck is hypermobile and I have inner ear pain. It’s a hypermobility disorder caused by collagen that is more elastic. It affects everyone differently. Look it up…if you can do the hypermobility examples then talk to a dr. I recently added flexeril at night and it’s been a game changer for my head tension. I also have migraines and do Botox and daily a qulipta. Much improved if I keep up with the meds. Good luck!