Constant Pain in Head - Never goes away - No answers
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.
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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
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Have you had any imaging.