Chronic Headache (since 7 yrs) - doctors have no idea why

What specialists have you seen ?

Sounds like a miserable situation.

I don't have much of anything to suggest, other than maybe food allergies - like no caffeine and lots of water. Seen an ENT? There are ENT's that specialize in allergies. I think you are saying this is in the front of the head (face) more than anywhere else, right?

Has anyone mentioned Trigeminal Neuralgia? I had a mild bout of it, but it was bad enough that I don't ever want to encounter it in a serious way. Check it out here...I'm not sure if this is where your pain is or not.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

Thank you for the replies and tips!

@Lynnwood
I have seen an ENT and adapted my diet to my intolerance but it didn't change any little thing about my headache.
Yes, my pain is more in the front of my head / face and at my Atlas (C1), but when it's really bad, it's all over my head. The colored parts of the picture in the article describe the areas of my pain really well (except for C1). I will ask doctors about it. Thank you!

@ReadingTeacher
No, I've never been evaluated for a TMJ. However, I've had a lot of problems with my jaw joints in the past, especially before the headache started and my jaw even hurts more on the side where the pains more in all of my body. I wasn't aware of the jaw joints having such a huge influence on the human body. The symptoms I looked up on the internet describe very well what I feel in my body. Thank you very much! I will search for a specialist in my city.

Ah, that's interesting.
For me actually, cold makes it a lot worse but warmth is kinda nice.
It would make a lot of sense to me. It's definitely very helpful because I know what to look into now.
Thank you very much!

Thanks! I also wish all the best to you!

Birdsinspring, We sound similar. My pain shortly after a hysterectomy in 92 and has been there since. I did have my horomones checked because of the timing of the hysterectomy but knew that migraines are hereditary in my family.

My pain is around my eye area always on the right side. I also have nausea and vomiting quite often and when the pain gets out of control it forces my blood pressure dangerously high. Thats one reason my MD was giving me shots. He also kept me on a low dose BP med to prevent it from going too high. Here's a list of doctors I remember seeing:

MD
DO
Neurologist
Neuro Opthamalogist
Psychiatrist
Headache Specialist
Pain Management Anestheiologist

Procedures-
Botox
Trigemenial nerve block
Every preventative medicine possible for migraine
Massages
accupuncture
Trigger point injections-on the day of procedure, the anesthesiologist(PM doctor) came in and said he was cancelling it because after looking at my records he did not want to put me thru the pain and discomfort when he was quite sure it would not work.
MRI(many)
EEG(several)
CAT scan

I am sure I am missing alot from that list. Of the doctors listed, I have seen at least two of each, at least 10 different neuros, 3 different headache clinics, etc.
I was with the same MD for 13 years and he sent me to many different doctors plus had me try everything out there medicine wise that either of us could come up with. He finally put me on a long acting narcotic and let me come in for a Demerol shot when nothing else helped. It was OK but not great. But improvement is always a positive. He moved to a clinic where they only see hospital employees so he sent a referral to Pain Management for me. I had already been to one PM in town and seeing all that I had tried, all he had to offer was Methadone which was a NO for me.

So as you can imagine I was unsure about this new Pain Management doctor. He was an anesthiologist just like the other one I had seen. The doctor had looked thru my records and said he thought I was under medicated and that I needed not only the long acting narcotic but a short acting as well. They did not do shots in the office so I was a little afraid of that but I did great with the two meds. Been there for 9 years now and have really no issues. Just recently the PA told me that they held out as long as possible but there is so much pressure to get patients down to the 90MME magic number that they just have to do it. I was only at 105MME so it wasn't much of an adjustment for me. They really listen to what the patients have to say and have been a godsend for me. I mean what other options do I have? I take every opportunity I get to thank them for treating me. There are alot of doctors who wouldn't.

I really think that until you have Migraine pain, you don't get the severity of the pain and everything that goes with that. I'm sure you have heard take an aspirin, or my Aunt used to put banana peels on her forehead and that worked great for her!

I also understand pushing thru the pain. You put that smile on your face and get done what you have to. You get somewhat used to a new "normal." People get tired of hearing you have a migraine....again, so you just stop telling anybody. "You don't look sick," that gets old too. I do get it though. Unless you have had migraine, you don't understand that it isn't "just" a headache.

Ok, sorry for writing a book, but wanted you to know I really do get it!

Cindy

Cindy, I know you said that you have been tried on many medications for the headaches. Did any of your drs ever try you on a low dose of Amitriptyline at bedtime? I ask because this is a very old medication that was used for headaches before all of the newer medications hit the market.

Birds inspiring-
First, welcome. I was reading your posts and the headache part sounded all too familiar. So, I’m under
the understanding you see a headache specialist on a routine basis. He/she should be up to date on ALL
the new meds out that could help.
He/she may decide you have tried everything they could think of and maybe a hospitalization MAY be in order to treat you with medications that require closer monitoring. That’s the part I have been through
for my chronic migraines.
Working with a headache specialist and having a “plan” when the headaches get 8/10 or more, should be a priority. You shouldn’t have to go through that! ☹️
Wishing you less pain,
Carol.
PS- keep in touch. Let us know if we can help.

Cindy, how was the DHE administered to you? Have you had an MRI of your cervical spine?

about ten years ago I was experiencing a similar pain or chronic headache as you have described. It never seemed to go away and was with me from the time I opened my eyes until I went to sleep. I would take a sleeping med to get to sleep and hopefully stay asleep. It seemed to not be as strong before I would open my eyes in the morning. I could feel that I was awake, and if I could hold off on opening my eyes, it wouldn't hurt. But the moment I opened my eyes for the day each morning, it was there constantly. This has no significant meaning, I just remember thinking how odd that was and the only break I had from the pain. I too went to an ENT, neurologist, had the MRIs, all that jazz and nothing helped. I had two procedures that afterwards-my head did stop hurting, and now I honestly don't remember which was the miracle worker, but I think it was the dentist. I experienced the unexpected loss of my young sibling (18) so any doctor or professional I went to just thought I was depressed and wouldn't explore any further symptoms. I did get on an antidepressant, and it has helped in other areas-probably from some depression of the chronic pain and helplessness. I went skydiving in the time leading up to the chronic headaches-three times actually-and the third time I had a cold. When my parachute opened and I had the freefall for five minutes that last time, it was the most excruciating ear pain imaginable. I needed to pop my ear so badly and didn't have a free hand. It was like when you have a cold on an airplane and your ears hurt so bad and then you know it is going to hurt when you pop them but it has to be done, intensified by about 1000. Since that moment I have had a stopped up ear that drains sporadically and has some hearing loss in it. I have been to four ENTs, neurologist, who knows who else and no one can help me. I thought my ear drum had burst-I am resigned to figuring it was some type of permanent barotrauma and while there is some residual hearing loss, pressure, and annoyance, it is not painful so I am thankful for that. During that process though, I had pressure equalizing tubes inserted and although it did not help my ear issue, I do not have that horrible headache any longer. As I mentioned earlier though, I don't remember if it was at the exact time of my headaches. I had a lot going on and with the depression and grief, it all kind of runs together. So maybe if there was some diving, airplane rides, etc with a cold, there could be some residual ear damage leading to pain. The other thing I remember from that time, and what I really attribute to stopping my headaches, was having some dental work done. I had a tooth towards the back of my mouth that was causing some issues and I had one tooth pulled that may have been laying on a nerve causing pain. I also had a route canal on that back side, and sometime shortly after, my headache disappeared. I was very thankful. Just some ideas for you. Good luck to you!

From 2014 to 2018, I had recurring migraines with sharp pain behind my left eye and a kind of droopy feeling on my left cheek.

Leading candidates were sensitivity to red 7 food dye (as it started after a binge of red candies), nasal polyps (CT scan), or instigated by muscle tension related to cervical scoliosis.

I cut out the red-died candies and also used nasal spray when I'd feel sinus pressure. In addition, I began using a bit of cannabis (high cbd, low thc) since 2018.

I dont know which did it. But, I've had only one or two migranes over the past year.

Back in 2014, I had one that lasted about 3 weeks. 2-3 days long almost every week was common.

If you're in a legal place, and you have not done so yet, consider cannabis. There's a lot of research supporting its ability to prevent and abort migranes.
Just one of many...
https://www.sciencedaily.com/releases/2019/11/191125100353.htm

Hey Birdsinspring,
I was just looking through the forum doing some research and saw your post. I had to join to provide you with some of my experience.
Firstly, I understand how difficult having a constant headache for many years can be, and I entirely believe that it is indeed every second of every day for you. I also understand how difficult this can be to explain to doctors, friends, family and work colleagues too - because I have been there.
After 20 or so years of chronic pain in lots of different areas of my body, I got my first migraine (which is probably not the right word for what I had, but it is the closest language I have been able to come up with in order to tell people what it was). I was actually in the fittest state of my life, but my body had been trying to tell me that something was wrong for quite a long time, which I just ignored! It spat the dummy, and one day a migraine just started for no particular reason.
That migraine, which was 11/10 on the pain scale, lasted 2 1/2 weeks and then died down to a headache that was a 7 or 8/10 depending on the day. That headache lasted for just over three years - every second of every day - except when it blew out into a migraine again, the longest of which lasted 5 1/2 weeks.
I went to a migraine clinic who charged me horrendous amounts of money, and then after 8 months of treatment told me I "would have to learn to live with the pain". I saw a "professor", a neurologist who was very uninterested in the situation and eventually told me there was "nothing wrong with me", after taking exorbitant amounts of money befitting his title of course. I saw a bunch of other doctors, none of whom could provide any kind of suggestions at all.
And while I have concentrated mainly on the headache issues, the rest of my body was still exhibiting its regular chronic pain too, so I was a bit of a basket case at the time.
Then, a bit more than a year of ploughing through my own personal hell, I finally took the advice of one of my staff and went and saw his brother in law, who was an Advanced Bio-Structural Correction (ABC) Chiropractor. I had put off seeing him for so long because I'd had no improvement with many other chiros I had seen in my life. The ABC chiros are a new breed that take a more holistic view of the body, and their methods are a lot more gentle than a typical chiro.
He diagnosed the issue as my brain being pulled down into my brain stem by my meninges (the "bag" that covers your brain and spinal cord so that your cerebrospinal fluid stays where it needs to be). The meninges of a "normal" adult has around 12cm of extra length which allows us to bend and turn without the meninges being caught. Unfortunately though, our spines not only bend, but they can twist as well. In addition to causing back pain, this can result in the meninges adhering to the spine in places, basically becoming fused to it. If this happens enough, that 12cm of extra length gets locked up in places, and suddenly your brain is being pulled down into your brain stem which, quite rightly, causes a ridiculous amount of pain in the form of headaches and migraines.
It took two years from that point, but slowly, my headaches got better, and eventually one day they were gone, although a pressure (it felt like a storm on the horizon of my brain) in my head still remained for a few years after that, but then that too disappeared. Given the medical system gave me no hope at all, and did its best to wash its hands of me, I count myself very lucky to have been introduced to this ABC chiro.
Your symptoms are nearly exactly the same as mine. If you are still having issues of this nature, start looking into the above. The condition doesn't have a name, but doing some research into fascia (the meninges has a very similar structure to fascia) might get you part of the way there. And given the other symptoms you have mentioned, you may have fascia issues throughout your body. Problems with fascia can easily cause chronic pain, and can easily be misdiagnosed as a multitude of other problems depending on which medical professional you speak to, because they usually only see things through their particular lens and training.
It's been 7 years now since that first migraine. During the really tough period, I also lost my business, I lost friends, and every single area of my life was affected. But with the right advice and treatment, I got through it and am now building myself back up in a healthy way. If I hadn't gone to that ABC chiro, I am not sure where I would be now. Life was hard enough with the appropriate treatment! Without it... There are answers out there. I hope that the above might help steer you in a direction where you can find some relief.

Have you seen a psychologist or maybe a psychiatrist? Although I think a psychologist would be better. Stress, especially chronic stress affects our bodies in different ways and pain is one of the main ways.

I am Not saying your pain is in your head. Quite the opposite. I am saying stress you are not aware of combined with stress you are aware of can cause severe chronic pain in one or more areas of the body.