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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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@nedwards I totally agree! My primary care doc had never heard of it, so I suggested that it might be Hemicrania continua and asked if she would be willing to try Indomethacin. Thankfully, she agreed. She is still referring me to a neurologist, but I can’t get in until mid December. If she had not been willing to try it, I would be suffering all these months. It’s insane.
I have done a good bit of research on the internet and I had never seen any mention of hemicrania continua on any of the things I had read. I have searched for it, and found several articles, and most say it is rare and often mis-diagnoised. My wife had been treated for migraines, and nothing seemed to help. We have told all the doctors she really does not have any of the typical migraine symptoms, but they all insist that it is migraine.
The primary reason I have posted anything on this site is to encourage anyone suffering from headaches and not getting any help, to ask their doctor to consider it. If you don't mind me asking, how did you find out about hemicrania continua?
There can be side effects from Indocin. I used it for hypnic headaches for 6 months and wound up with gastritis. Daily NSAIDS are not without consequence. Omeprazole should have been advised for me to go with the NSAID. Proceed with caution when using any NSAID regularly.
I think I said in my comment "if properly taken" or something similar. Her doctor advised her of the possible problems with stomach issues and to sure to take it with food. I guess my question is did it help your headache? The stomach issues is my fear, what can she take to control the headache if, or when, the indomethacin starts causing stomach problems. It was good that she finally found the real reason for her headaches after 6 years and many medications that did not work
@nedwards
Thanks for this info. I've never heard of imdomethacin. I will run it by doctor
It is an old drug, registered by FDA in 1965. Not used much any more, was used primarily for gout and arthritis . The major problem it is tough on your stomach.
@barrylass I suffer from Occipital Nuegalia they are so bad when they are bad. I take trigger shots, nerve blocks, and have a clincal massage on head every four weeks. I may go for a few
months, sometimes, one month. I use "Migraine Cap" keep frozen in freezer I always have two.
It is the only thing that give me comfort. My last headach (flair up lasted three solid weeks:
I do know how you feel. They pain gets in back of my head called "Ice Pick" that is a great name
for them. Most of the time mine start on my right side of my neck, I know I am in for it. Meds do not seem to help they made so very sick. Thinking of you, we this group really knows how awful and miserable life can be. Best to you for more pain free days.