Help me start on a path to ridding myself of awful headaches
March 31, 2018 2:04 PM   Subscribe

I have been getting awful headaches (In the face, [jaw, lips, eyes]) for about 15 months, specialists have tried to help but they weren't much help. I do yoga, meditation, eat healthy, no alcohol, no caffeine. Help send me on a path to finding out more about my pain. Snowflake details inside.

I get extremely painful “headaches” (for the past 15 months, off and on) which happen in my jaw, mouth, upper lip and eyes, it feels like deep pressure. I’ve seen several specialists and they’ve offered SSRI’s and anti-depressants, vitamins, etc. Nothing has worked completely, although severity and frequency have both improved. I do meditation, yoga, etc, and usually my pain is fine, but about once every couple months it gets to a 7/10 on the pain scale.

Things that make it worse: caffeine, alcohol, lack of sleep, stress
Things that make it better: cold shower, a good night’s sleep, xanax (I only take xanax for fear of flying, but I noticed that it completely relieves my facial pain).

The problem might be due to an overactive sympathetic nervous system, pressure on a cranial or something else.

I want to go about trying to fix this problem on my own. Any suggestions on where to start? What things I can try, natural or otherwise? Or what books or data I can read? Is there a name for this type of headache?

posted by maxexam to Health & Fitness (27 answers total) 5 users marked this as a favorite
First things first, get your eyes checked ASAP. Literally go to Lenscrafters, Target, wherever for a checkup.

I had severe, daily migraines and debilitating vertigo/balance problems because... I needed glasses. Yup. YEARS of desperately needing glasses but my other chronic illnesses mixed up all the symptoms.

I ALWAYS tell people to get their eyes checked with unexpected headaches. (I mean, I literally got brain MRIs without anyone suggesting I read a damn eye chart. I didn't know my vision was shit.)

Otherwise, start tracking food, activities, medications, and symptoms. Some hospitals, especially university hospitals, have specialty departments specifically for headaches.
posted by Crystalinne at 2:23 PM on March 31, 2018 [7 favorites]

Do you think it could be referred pain, as in skeletal or muscular? I've had headaches (minor ones, nothing like yours) caused because my back was out. Maybe consider seeing a physio if any of this resonates. I've also had sinus pain in some of the areas you mentioned but I think you'd have identified that by now if it were the case.
posted by Jubey at 2:26 PM on March 31, 2018 [1 favorite]

Also, what about temporomandibular joint stress. Might be helpful to get your teeth/jaw checked out.
posted by MovableBookLady at 2:34 PM on March 31, 2018 [8 favorites]

I had some improvement when I started taking antihistamines- I had never had headaches before and suddenly had them all the time and I guess it was allergies and sinus pressure.
posted by catspajammies at 2:40 PM on March 31, 2018

I have different headaches than yours, so YMMV, but Botox injections for migraines are very helpful. And Botox has the Botox Savings Program where they help you out with the cost. You have to get the injections every three months. They will shoot it into the jaw/around the eyes if that's where you have the pain as well as around the head.
posted by vegartanipla at 2:43 PM on March 31, 2018

Try Sudafed, see if it makes a difference. Real Sudafed, the kind you have to register as a meth dealer to get, not the other kind.
posted by DarlingBri at 2:45 PM on March 31, 2018

Any chance it’s your sinuses? Mine are little brats, and of all things, only Excedrin Migraine touches the pain.
posted by armeowda at 2:59 PM on March 31, 2018

Do you have an overbite or underbite? Before I started Invisalign, I would get pretty bad headaches from the mis-alignment of my jaw. Your regular dentist would be able to tell you if your bite is off. If you're grinding your teeth at night, too, that could cause it.
posted by nakedmolerats at 3:51 PM on March 31, 2018 [1 favorite]

Just because I'll use any excuse for a massage, I'd try getting a massage. They probably won't cure the problem but since stress makes it worse and xanax makes it better, it seems worth it to try things that help relieve muscle tension.
posted by bunderful at 3:57 PM on March 31, 2018

what significantly helped: sinus infection surgery
what mildly helped: less air travel, dental work, candesartan, consistent sleep hours, patience
not much help: no alcohol, no diet soda, extra exercise, less screen time, new glasses, computer glasses, tinted computer glasses, numerous head scans, better diet, extra showers, hot tub, carefully logging impact of treatments
what others suggested as a cause: high blood pressure, grinding teeth, clenching teeth, work stress
posted by aworks at 4:01 PM on March 31, 2018

Could it possibly be cluster headaches? I mean, I hope not as I hear they are truly excruciating and difficult to deal with, but perhaps worth looking into?
posted by Mrs. Rattery at 4:35 PM on March 31, 2018

I have had a headache for 24 years, give or take a few months. Headaches can be caused by all sorts of things, or by nothing in particular, and treatment for them is a process of trail-and-error: check out the TMJ; get the eyes checked; consider the possibility it's sinus; look into night-time tooth-grinding; do an elimination diet; try physical therapy and osteopathic manipulation; try the botox; try assorted medications originally created for various other ailments (SSRIs, pain medication, seizure medication, antipsychotics, high blood pressure medications, and more are all efficacious for headache in some people).

The advice I would give you if this lasts much longer: get to a headache specialist as soon as you can. They have the whole picture, keep up on the latest, and know the different types of headaches. I wasted a lot of time with GPs and with my own piecemeal attempts to get treatment before I finally saw a specialist, and wish I'd done it much sooner.
posted by Orlop at 4:37 PM on March 31, 2018

Did you move into a new home in the past 2 years / 15 months? Could the cause be environmental?

My story: I lived in a high-rise building for almost 20 years but was plagued with terrible headaches. I attributed these to stressful life, lack of sleep, running too much, not exercising enough - nothing helped. Until five years ago, when I moved out to my current home. The current home does not have carpets and I keep it spotless.

You see, in the previous home, whenever we had a severe rainshower, the wall in my bedroom and in my living room would become damp. I started noticing this on the last year of living there. I can just imagine the amount of mould between the external wall and the inner wall. After moving out, the headaches stopped.

I had gone to my doctor, had a CT scan, went to see a variety of specialists when trying to treat these migraines that happened 2x month. They were daylong when they began, and in the end were 2 or 3 days long. Perhaps you are dealing with an allergy, a severe allergy to mould.
posted by seawallrunner at 4:38 PM on March 31, 2018 [1 favorite]

Have you looked into TMJ?
posted by amro at 4:54 PM on March 31, 2018

Have you been checked for trigeminal neuralgia? Would definitely go see a headache specialist.
posted by leslies at 5:37 PM on March 31, 2018 [5 favorites]

I don't know if this qualifies as "fixing it yourself," but try physical therapy. I have bulging discs, which cause severe migraine pain, daily. PT has changed a lot of that.
posted by mrfuga0 at 6:07 PM on March 31, 2018

If your blood pressure readings are usually in the normal range, make sure to have your BP checked during these pain episodes.
posted by Iris Gambol at 6:16 PM on March 31, 2018 [1 favorite]

I have been having vestibular migraines for the past few months, and keeping a really detailed food diary helped me pinpoint some food triggers. I used mySymptoms which worked great for me.
posted by radioamy at 8:34 PM on March 31, 2018 [1 favorite]

The intermittent nature of your headaches (and personal experience) make me suspect that it is a musculoskeletal issue. If a massage is within your means, I'd book one during one of these flare-ups and see if it helps; if it does, a good therapist will tell you what they're working on, and eventually you can try to DIY with a theracane or lacrosse ball strategically placed.
posted by batter_my_heart at 9:03 PM on March 31, 2018

You don't mention migraine medications, and I'm frankly shocked these haven't been tried. Sumatriptan is available in a generic and is inexpensive, but any triptan med would be a good start. It's appalling to me that you've seen specialists and they haven't offered them to you; they're not painkillers and don't have any potential for abuse.
posted by Violet Hour at 10:35 PM on March 31, 2018

Seconding checking your blood pressure regularly. I suffered these headaches and kept thinking it was my neck or skeletal system and routinely saw a chiropractor to adjust my neck. When I finally thought to check my BP with my GP, she freaked - it was *extremely* high. Like over 200/140, crazy high. Medication made me a new person, headache free.
posted by honey-barbara at 2:44 AM on April 1, 2018 [1 favorite]

I also wondered about your trigeminal nerve, but could be a lot of things. When you say you have seen specialists, has that included a neurologist specializing in headache? Antidepressants being the only drug intervention mentioned for 7/10 pain, no diagnosis AND also no listed ruleouts means either the physicians you’ve seen aren’t in the right field, aren’t trying as hard to help as you credit them, or aren’t getting the feedback to understand that they’re off track. I would really start there before trying to DIY.
posted by LadyInWaiting at 2:59 AM on April 1, 2018 [1 favorite]

I was extremely frustrated by my interaction with doctors in a similar situation - series of "8/9 level pain" headaches with very strange onset. They happened 4-5 times over the course of two weeks. And then nothing. It was good to get the "brain bleed" life-threatening stuff ruled out, but beyond that the doctors just didn't know enough or didn't care enough to figure it out. The GP just kept calling it migraine, when I had none of the symptoms (besides bad headache) and no history of them. Migraine is a catchall bucket at this point for mystery headaches.

I went on a prescription beta blocker for a month or so, then weaned myself off when it became clear nothing more would be discovered. Naproxen seemed to be the only thing that helped with reducing the pain. Again, similar solution to a migraine, but definitely not the same thing. Good luck!
posted by SoundInhabitant at 12:27 PM on April 1, 2018

My daughter had pain something like this caused by grinding her teeth while asleep. She now wears a plastic mouth guard at night. fitted by her dentist. This has reduced the problem a lot. Just one more possibility.
posted by communicator at 2:44 PM on April 1, 2018

One more lead- biofeedback training. I had terrible headaches as a teen and did the whole workup to find a cause. Turned out to be a TMJ disorder. I did weekly sessions where I had electrodes taped to my head/face/neck/upper back and did specific mental exercises to lower my muscle tension, heart rate and blood pressure. Thirty years later those techniques are still helpful to me. Best of luck.
posted by PorcineWithMe at 8:12 AM on April 2, 2018

Thirding the trigeminal neuralgia possibility. The trigeminal nerve starts in the brain and branches out in three places (hence the name) - the upper, middle and lower portions of the face. My dad had it in his mouth, and had a bunch of root canals and expensive dental work until he stumbled on the cause. Read more about it here, and please see a pain specialist or neurologist if if continues. This is something that needs to be addressed and treated asap. If not, you end up needing brain surgery to cushion the blood vessels pressing on that nerve. My dad's been through it twice, and you don't want to get to that point, believe me. Best of luck to you.
posted by jhope71 at 9:47 AM on April 2, 2018

I have both trigeminal and occipital neuralgia. With the TN, there are two primary types. Type 1 generally involves "lightning strike" type pain. Type 2 is a lower level constant burning or aching. Since I'm an overachiever, I have both. Some folks will tell you that you have to have visible nerve compression on an MRI to be diagnosed. Some folks are idiots. Something like 70% of cases have no visible compression. Treatment becomes diagnostic; if you take Tegretol or its cousin Trileptal and experience relief, congratulations, you're in the club.

Nerve blocks work well for a lot of people. Anticonvulsants do a pretty good job for a lot of us. If all else fails, yeah, opiates work. (Good luck getting anybody to prescribe them.)

My pain levels tend to spike when I'm under extra stress, strain, or anxiety. That could be where your Xanax is helping you out. (I'm a Klonopin gal, myself.)

You want to see a neurologist, anesthesiologist, and/or pain specialist.
posted by The Almighty Mommy Goddess at 11:05 AM on April 3, 2018

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