Constant Pain in Head - Never goes away - No answers. Ideas?

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 marzun @marzun

I'm sorry. What you going through sounds horrible. 6 months out to see an specialist is just unexcusable in my opinion. sadly that is not uncommon this days. the first thing that comes to mind is the experience my nice have with trying to get pregnant. she went and waited for months and spend over 25,000 on doctors here in the US and nothing work. finally she found a private clinic in Peru were very quickly she was able to see experience doctors in the field and for a fraction of the cost. she delivered a healthy baby a week ago. All this to say look some where else outside the country or do what I heard someone else did. Go to the emergency room of a prestigious Hospital in a rich town and get admitted there. You'll be surprised what experience doctors with resources can find and fix. If you are desperate enough you won't care about the bill.

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@marzun I'd second this. I know a friend who just travelled to Colombia to have brain surgery for cancer and it was both arranged and happened in the blink of an eye, with smooth recovery and nice conditions. $ was also much less than here in America. Sad that USA can't provide for it's own people - often, it's all about making a profit. I deal with daily vestibular migraines (and now optic neuralgia), so I can empathize. Good luck to you @cmwatkins98!! Someone out there is waiting to help you - the right door will open in time. Stay strong!

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