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Constant Pain in Head - Never goes away - No answers. Ideas?
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.
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It has been a year for me, my headache started out small, on the left side of my head. I was being seen by my PCP for anxiety and depression, due to my brother sudden death along with stress from my job. I went out in February 2025, and still haven’t recovered. I’ve seen two different neurologists, had MRI’s, been prescribed several different medications but nothing has changed. I still experience 24/7 a day headaches where I feel like my head is contained in a pressure hat, I don’t know what to call it. It’s both sides of my head now. I’m currently on no paid FMLA, with my credit and life not getting any better. MetLife says because my first neurologist wouldn’t submit paperwork that I should be able to work. Doesn’t matter that I spend 8 hours a day on the phone dealing with other people’s prescriptions and stress. Just go back to work.
I feel like a weight is constantly on my head and I have ear muffs on. I try to stay still a lot because I have problems with my balance.
My family wants me to work with the Mayo Clinic, but I don’t have the money.
I found this message group and wanted to share in support
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1 ReactionSome of migraine patients with the time they suffer from additional tension headaches....
You can stop your headaches if you do finger pressing on the occipital artery that located in back of the head.... keep the artery closed... you will stop the headaches...
Occipital artery is a skin artery...
Do this test and tell us what happened
Sorry to hear what your going through as I have suffered from the same issues for the past 10 years and tried so many different drugs, scans until recently when I went to the doctors as I couldn’t cope anymore and this doctor who I’ve not seen before suggested I drop all the drugs and do neck exercises 3-4 times a day and wow! I’ve not had a migraine for the past 6 weeks, try it as it’s working for me hope it works for you- to many doctors push drugs onto you when simple things we haven’t thought about can be a miracle- good luck!
@duvaldena sounds familiar. I have TMJ have to be careful how I chew . The left side mostly,jaw ,ear to side of head.,neck,shoulder. Lightheaded, In morning glittering effect in peripheral vision.I do have occipital neuralgia. Magnesium and B1 gummies help. Two 400mg before bed. Nervive roll on neck and up on head .Sit straight and do chin tuck to stretch same ,then turn to look at armpit area. Several times a day.
Maybe my pillow is to blame too?? Head posture important don't let your head hang down or looking down at your phone. All this comes from various doctors.I do use natural medicine. It helps .
Almost 7 years for me!
I also have a consistent headache and have been diagnosed with New Daily Persistent Headache, mine started on March 1, 2019, with no headaches at all before this. The only thing that changes is the intensity of the pain, there are quite a few nights that I cannot sleep because of the pain. And as of last month, the Neurologists have give up me. They are sending me to an Anesthesiologist for 3 infusions of Ketamine which is an experimental treatment for NDPH, and if that does not help, that's it. The Neurologist I was seeing did not make a future appointment.
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2 ReactionsI had similar that lasted for about 8 months. Started suddenly and nothing medical worked.
Pills, Botox, scans, tests etc all useless or showed nothing and noise made it worse. I looked into alternative options and for me osteopathic massage cured it. Not immediately, but after 2 or 3 sessions I felt functional again and after a few more it stopped. My osteopath suggested that maybe it was because blood was not flowing to my head effectively. Whatever the reason, those massages to my head, neck and shoulders stopped the 24/7 pain.
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1 ReactionThank you
@limmylemon my daughter goes to Mayo for her cancer and was diagnosed with brain cancer recently on top of her other cancers she is living with. For her headaches migraines they had given her migraine cocktails while at the hospital. She is now on nurtec. She hasn’t taken it yet since her migraines have reduced but if she does use it I’ll let you know if it works.
Thank you so much
@stevenj77 First, look for a long COVID specific practices, particularly those with a strong autonomic dysfunction/CFS/MS, etc.. emphasis.
COVID can directly damage the white matter in your brain, in addition to causing gray matter loss. Grey matter volume can be recovered; White cell death is not reversible. COVID acts like an autoimmune disease. It damages the blood-brain barrier, which allows more things to pass through, and simultaneously causes detrimental immune system activity in your brain and CSF.
There's currently a lot of research going on regarding long Covid that's finally shining a light on a lot of other conditions with similar and related symptomatology.
I highly suggest going to an ENT regarding your ears. The fact that it's continuing to be damaged, causing dizziness and tinnitus, after the Covid subsided is concerning. It's like losing your sense of smell afterwards instead of during.
Tinnitus is often caused by inflammation. The pressure damages the related main nerve of your middle ear responsible for your hearing. You can also lose your ability to hear properly or lose certain volumes and tonal frequencies. A hearing test with the ENT is an important thing to have done. They can see where you stand now, and monitor for additional losses. They may have some ideas on how to help. Sometimes losses can be regained. Unfortunately, the Tinnitus is pretty permanent. I suggest a white noise machine at night.
A sleep study also wouldn't hurt. Mayo has the absolute best facilities for that, so potentially having access to that is very fortunate.