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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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@marzun I'd second this. I know a friend who just travelled to Colombia to have brain surgery for cancer and it was both arranged and happened in the blink of an eye, with smooth recovery and nice conditions. $ was also much less than here in America. Sad that USA can't provide for it's own people - often, it's all about making a profit. I deal with daily vestibular migraines (and now optic neuralgia), so I can empathize. Good luck to you @cmwatkins98!! Someone out there is waiting to help you - the right door will open in time. Stay strong!
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2 ReactionsI am sorry to hear what you are going through on a daily basis my son suffers the same symptoms as you on a daily basis but he has has multiple brain surgeries along with having a shunt placed after a massive tumor removal
He also has tried Botox and migraine injections to no avail his seizure meds are working at keeping his outward seizures at bay but what he describes as his daily inward like seizure / electrical sensations nothing seems to help
It is a frustrating situation for many
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2 Reactions@jemollica
Thank you it’s a rough journey
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1 ReactionTry to do some research on your particular symptoms to help Dr's zero in on your head pain. Never did understand how Neurologists can just prescribe multiple medications, most having serious side effects, without even doing much testing or know what the problem is?. While your waiting for another Neuro to throw more meds that don't work for people with NDPH, see if you can get an appointment with an Infectious Disease specialists.
It took 4 years of what you are going through right now to find I had Babesai disease from a tick bite. It also took several different Infectious Disease Dr's to agree to run the blood tests for multiple viral, parasitic, fungal, etc. tests. Eventually found a Dr. willing to send in the tests to TLab, but I had to pay out of pocket. Keep advocating for yourself and don't feel like a hypochondriac because you want your life back.
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1 Reaction@beachlife67
Was the spot she pushed on right at the base of your skull?
Below my ears, under jaw on both sides.
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1 Reaction@headpressure
An update….after an exhausting almost a year now trying to find cause of head pressure & other sx’s
I currently stopped my blood thinner Xarelto had a cardiac monitor implanted to monitor my AF which I have not had since ablation 1.5 yrs will see if Xarelto is culprit causing sx’s (risky I know) just a few days into this but joint muscle aches already better time will tell….
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1 Reaction@beachlife67
Did she maybe hit your trigeminal nerve?
@jalapenoheadache
I believe my trigeminal nerves and occipital nerves are both affected from this on both sides. It’s been over two years of pain but imaging supposedly show nothing. It’s debilitating.
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1 Reaction@beachlife67
I feel your pain. I have same symptoms. Meds made me nauseous which doesn’t help as I am constantly nauseous.
Love some input.