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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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@bdoyle
For nausea I use Sea-Band wrist bands. Available at Walmart for less than $10. They work for me.
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1 Reaction@lisalucier Hi Lisa, sorry for the delayed response. No incident that precipitated these symptoms that I am able to recall unfortunately. This has been quite the struggle to figure out.
I checked into the ER at a local hospital last month where a lumbar puncture was performed. They determined that my CSF pressure was on the far lower end of normal and decided to perform a myelogram. A possible CSF venous fistula was discovered from that test and I am now undergoing further testing (additional myelograms) to confirm. I am praying to get some answers as this has been so difficult to deal with.
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1 ReactionSimilar situation here. I really don’t know what to advise you on doing because like you I have tried everything and nothing works. Miracles are possible and I am praying for this for all of us.
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1 ReactionYou have basically described what I’ve been going thru over the last 9 months. It stated in my ears, hearing loss and pressure, so my PCP sent me to see a ENT which included ahearing test and cochlear test. Just a little sinusitis. Then I developed this headaches. I’ve had a continuous headache and some form for the last nine months some days it’s in the back of my head behind my ears and then in the top. I also experience what they call icepick headaches sudden stabbing pain sometimes it feels like something crawling around in my head. I have difficulty thinking finding words, concentrating sensitivity light. I’ve been to say an ophthalmologist, a neurologist and a neuroscience center. They tried several different migraine medicines, over-the-counter meds, essential oils every now and then and over-the-counter or Excedrin migraine. Will take the edge off of it. Those are the days I say that I just have a regular old headache then just when I think I may not have a headache for a few moments then I have a pain somewhere in my head not only do I have all this going on. I’m also experiencing pain in my legs and in my arms. My
Headaches are worse when I lay down. Sometimes I wake up in the morning, and the light is too bright. Sometimes cold compresses on the back of the neck or on my forehead will ease the pain. I could go on and on, but it’s nice to know that there are other people out there that are experiencing things along the same lines with no answers so at least I know it’s not in my head. Lol I don’t think I suffer for migraines. I too just call it pain in my head. I’m exhausted.
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1 Reaction@beachlife67 I have had a similar thing happen to me. This the ENT sent me fo a hearing test and while in the booth I got a headache and I have had it for 9 months now. Daily from one magnitude to another. No relief and no answers.
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1 Reaction6-1/2 years for me so I understand. I am sorry for all of us.
The worst pain ever was Trigemenal neuralgia. Totally took me down. The doctors were useless. My tooth finally broke in half. (wisdom tooth). They can't diagnose a hairline crack I found out. You must get a CT (3-dimensional scan of the tooth). I'm not saying this is your problem, but something for you to observe. Also, please try an MFR therapist. You can look it up here or on the internet. They put things in order and relieve pain. They might be helpful in diagnosing your issue. They are amazing! I paid out of pocket because it was so valuable.
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2 ReactionsHave anyone ever tried gabapenton? I have been struggling with serious headaches ever since I broke my neck. In the last 10 years they have become much worse. I am so open for suggestions. Thank you
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2 ReactionsI have and it didn't help me @dstetson58
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1 Reaction@beachlife67 I had the same burning behind my ears and it always seams to be one ear or the other but now i get vertigo and headaches intermittently and stutter real bad on and off.I am gonna call my pain dr and get scheduled for nerve ablation because it always seamed to start at my neck
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