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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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@lisalucier
I had an intermittent pain behind one ear for several months and was advised to go to an ENT. At that appt. the doctor while feeling my neck, stuck her fingers in deep and caused lightening bolts of pain in my neck. This started nerve burning attacks and zaps all over my face that then moved into my head within 2 months, and everything has gotten worse ever since. I rarely even had headaches before all this.
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3 Reactions@ellenblythe
The only migraine med I’ve tried is Qulipta. Wasn’t bad the first month, not sure it really helped all that much, but I started getting chest tightness and felt like I couldn’t take a deep breath.
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1 Reaction@beachlife67
Hello, may I ask, did you try Aimovig before? It was working so well for 6 months but not so much anymore and my Neurologist has suggested changing to Emalvy (sp?)
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1 Reaction@beachlife67 - welcome to Mayo Clinic Connect. I'm so sorry you've had this constant head pain plus vertigo-related issues.
Was there any incident that precipitated these symptoms you're experiencing?
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2 ReactionsI have the same issue. Constant head tension. Mine is due to ehlers danlos syndrome. My neck is hypermobile and I have inner ear pain. It’s a hypermobility disorder caused by collagen that is more elastic. It affects everyone differently. Look it up…if you can do the hypermobility examples then talk to a dr. I recently added flexeril at night and it’s been a game changer for my head tension. I also have migraines and do Botox and daily a qulipta. Much improved if I keep up with the meds. Good luck!
You have written exactly what I’ve been going through for over two years! In addition I had a first ever Vertigo episode 10 months ago, and since have been struggling with feeling off balance, dizzy, lightheaded, and disoriented when in busy or unfamiliar places. Test results don’t show anything. I wish I had an answer or suggestion for you, but everything I’ve tried has not worked. If you find a solution, please let me know!
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5 ReactionsMy symptoms are exactly the same. I’ve been suffering for 5 months now and have just started Botox injections which so far have had no effect. Neurologist said to expect that when just beginning. I have had migraines most of my life but this every day occurrence is almost too much. I feel for everyone who has suffered for years. 🙏🏻
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3 ReactionsMy friend just went to Cleveland Clinic for 3 days of testing and they determined he had sleep apnea. He has had a headache for months. Now he will treat for that and see what happens. Good luck in Cleveland. Please keep us posted.
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3 Reactions@mikaylar Hello, yes it is so rough. Makes everything in life so much more challenging. It never goes away. I am in Ohio and have seen a couple of Neurologists here locally. I am also scheduled to go see another headache specialist at Cleveland Clinic soon.
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2 Reactions@gently I've had CT Scans and MRIs done of both my head and cervical spine. Nothing there according to the docs.