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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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@dstetson58 I have been on Gabapentin for 10 years or more.Doesn't help
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1 Reaction@larry68
What nerves are you seeking ablation for? When I inquired to a pain management Dr about occipitial nerve ablation, he cautioned that it may cause other problems, since my pain seems to be in both the occipital nerves and the trigeminal nerves and both those nerves converge and “talk” to each other. I have pain everywhere in my head including my face. Let us know how things go for you. It’s such a debilitating issue and it’s hard for those that haven’t gone through it, to understand. It’s not just the pain, but the lightheadedness, dizziness, and feeling like you are going to pass out.
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4 Reactions@beachlife67 I am gonna go to a neurologist 1st and see what they say.I had it done 3 years ago for neck pain.
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1 ReactionI feel your frustration. I am right here with you. Mine started about 4 years ago and over there years it is getting worse. I have tried everything you just described sometimes it felt as if it was working for my pain to come back and say nope I am not done with you yet. I have been through the wringer with this but right now the way my head feels the ringer may actually feel good for at least a little while. I try to keep faith, hope, and positive that something is going to work. But with every trial and every doctor it is breaking the bank. 😭😭
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2 ReactionsTwo shots, three bouts with Covid. The third bout with Covid was the worse and I would have cut my head off if there was an easy way, the pain in my head that bad. Now we are in 2026 and my head feels so so bad and seams to be getting worse. The head aches, constant. The dizziness, constant. The ring in the ears now constant. About two hours of sleep nightly. Not much support for this in California. This 74 year old man who’s been around the world and seen quite a bit is in a real bind like never before. I truly feel everybody’s pain who is suffering through out the world. I definitely need help, I have been looking but not finding.
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1 Reaction@stevenj77 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.
@duvaldena That's very interesting. I have a version of EDS, everything but the skin elasticity. My neck mobility has shocked more than one person. I personally didn't get much help from flexiril. Skelaxin and Methocarbamol both help my muscle spasms. It does make sense that it would help migraines.. as relaxing muscles is the point of the Botox. Have you had a TMJ CT/MRI? EDS tends to change your jaw and cause teeth crowding. They can add Botox to the TMJ (joint) muscles. I have a feeling that's where your inner ear (technically middle ear) pain is coming from. It causes eustachian tube dysfunction that adds pressure and fluid to the middle ear. It can also mess with your balance. An ENT/oral surgeon consult could be beneficial. My Neuro couldn't get permanent authorization for the additional TMJ Botox. The oral surgery dept apparently is much more successful. I'm in that process right now.
The blurred vision and concentration issue could be from an aura. Mine does a lot of that type of stuff to me.
I suggest getting physical therapy on your neck and shoulders - PARTICULARLY Ultrasound Therapy!
My best results came from using TENS with heating pads to prepare my neck, then having massage and ultrasound. I have really bad muscle spasms and tension in that area, and that plus a skelatal muscle relaxant like Skelaxin or Methocarbamol is extremely effective at removing that extreme stiffness.
Soma is also a different type of skeletal relaxant you could try - it's controlled and pretty much considered the strongest available. I've personally never tried it however. Prior to my Botox, the close-to-toxicity dosage of muscle relaxants I needed to stop my severe spasms precluded something I couldn't push up the dose with. My Migraine Botox (which gets my neck and coincidentally, the most problematic neck muscle) has decreased the severity to where I can now use normal dosing.
They can also try steroid or combination steroid/muscle relaxer trigger point injections. Into the neck and shoulder muscles.
Does the pulsating pain match your pulse? If there's a vascular component, beta blockers can help. Tracking your blood pressure with the pain intensity to see if there's a correlation could be helpful.
I also found that IV Dilaudid did really help with a vascular headache I had after a hypertensive crisis had to be allowed (and treated) during sinus surgery. It took about 4 or 5 doses in my case for minimal pain control. It could be an informative test to see if something that works on vascular based pain helps you when nerve blocks do not.
You should also look into any active TMS studies in your area, and the alternative migraine home devices for electrically stimulating both the vagal and trigeminal nerves.
@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.
Thank you so much