I suffer horrific migraines. One day after someone mentioned TMJ. I started massage various points around jaw. Found an incredibly painful spot. Worked on it over 3 days until it stopped hurting.
Migraines stopped. Several months later they started again. That same spot was bad again. Same results.
What kind of doctor did you go to and what kinds of testing did it take? How long did it take once you figured out what was going on to get to 90% better? My neurologist seems disinterested in finding the root cause. I even had to diagnose myself and then go to several doctors until one agreed. I take migraine meds and they help a lot so far, especially Ubrelvy, but it is $100/pill and I am not sure it will be covered by insurance.
I'm going through this right now. 3 trips to the ER to get a diagnosis, since it just happened spontaneously. Two months so far laying flat 20+ hours a day. I haven't been able to see a neurologist yet about it (I have an appointment scheduled soon now). For me, the headache is usually nearer the bottom of my head, but it tends to move around with different posture.
> I get weird pains they call "cluster headaches" in my face
if you have not already done this, you could consult an "migraine center". There is no cure but there are some effective (for some people at least) options for treating cluster headaches, like triptans and lifestyle changes (regularity in sleep patterns, etc.)
TMJ was the cause of about 7% of my migraine.
Watched a few YouTube videos, self massages for a few days. Found a spot that was super painful. Once it released, Migraines mostly gone.
Underlying causes. Autoimmune Sjogrens, clotting disorder that was in over drive (factor 5) high cranial pressure(IIH)
Nerve damage(probably from Sjogrens) lot Vit D
Did an elimination diet. That calmed the body down. AIP diet to maintain.
Started high doses of Vit D, E, Omega 3. Started watching bob and Brad and spent a couple hours a day on stretching and massages.
Discovered and treated TMJ. Removing smells and lights. That got migraines under control. (Slow reduction over the months)
LDN got nerve pain under control.
Diamox to get head pressure under control.
The big one was I kept having stroke symptoms, but MRIs were clean. Started blood thinners and symptoms went away.
My pain is not linked to anything except stress and barometric pressure. I have been diagnosed chronic migraines (a diagnosis I do not really agree with) and chronic sinusitis. When I was 16 a classmate with whom I had a disagreement with saw fit to smash my face between his fist and a wall I was backed up against. This scarred my sinuses and two surgeries to attempt to fix it have failed (and they can't safely try again). In addition I suffer from something resembling a migraine, I say resembling because it has not stopped for the last 6 years (migraines are suppose to come and go, this just changes in intensity. My current theory as to the cause of my "migraines" is I have a sensory processing disorder, but according the the DSM I need to also be autistic to have sensory processing disorder (of which I only have the symptoms that overlap with being a programmer and academic and thus it does not make a lot of sense)
The first few years of these pains were exactly like you described. I was constantly suffering and it was breaking me down. I was mostly non-functioning and barely able to keep up with high-school. After three years of nonstop pain I realized my life was not going to go anywhere until I had made some changes. I decided I was going to strive to not suffer from my pain. That is an impossible challenge. It is not 'coping' per say, as I do not hurt any less but it is coping in the sense that I decided to put on the strong facade of not hurting to the majority of the world.
I've been neurologists, on multiple medications. The few medications that did work (Topimerate for example) lessened and even stopped the migraines, but with bad cognitive effects (short term memory issues and shortening of my attention span). Right now I am unmedicated and working on my PhD. My end solution to the pain is to work so much that I don't have much energy left for suffering. It's not fun, but it is better then wallowing and I'll take that.
I'm sorry to hear that. My wife has a rare brain disease and unfortunately, it's something she's all too familiar with. If it's happening to you without corresponding migraines (or even with), see a neurologist, there may be something wrong. Her neurologist regularly sends her for opthalmologist exams just in case and they never find anything wrong.
My story: at age 24 during taking shower I suddenly experienced pain in left part of my head. It felt like inflamation. It stayed for about 10 years and devastated my life every single day. I considered that chronic. I never gave up. Fast forward to present: I'm 45 and still have very faint feeling of inflamation on a bad day. How I dealt with the problem: changed my lifestyle, diet, sleeping habits. Mindfulnes and creativity are best cure.
I've had a chronic headaches for over 20 years. Actually just one big long two-decade headache, it's never gone away and nothing, including painkillers, really helps.
Three things that I do to deal with this:
- ignore: most of the time it's not top of mind; I can feel it always but don't think about it always.
- keep up some hope: every few years, I go through the usual rounds with my GP and other specialists to see if there's anything new that can be tried to mitigate it. This is something of a double-edged sword though, as it is eventually paired with another crushing disappointment.
- remember there is a natural end to this: one day I'll be dead and it won't matter any more, it's temporary in the same way that everything is temporary. And if I get fed up with it all and want to leave early, it's doable as a last resort. A literal last resort, really.
I've also developed chronic lower back pain and tinnitus in the past 5 years and deal with those in the same way.
I know nothing about her diagnostic, but I have had severe migraine like that in the past. Manifests as a strong pain behind one eye and sometimes the neck. It's so strong you can't even think right, you just crawl to a dark room and wait it go away. You know it's coming when you start seeing visual artifacts and/or develop tunnel vision. If her symptoms are like that, read along.
In my case it was simply stress. Sleep deprivation, a lot of caffeine and stiff neck, jaw muscles all the time. It stopped overnight once I quit a stressful job, changed my lifestyle and cut back on caffeine. I didn't consulted with a doctor, because I knew I would be prescribed some heavy stuff. While I had the crisis, the only thing that worked to subdue the pain were muscle relaxants and a hot shower, headache/migraine drugs I've had already been prescribed did nothing, so I knew it was psychosomatic.
Take that with a huge grain of salt, as it's just one anecdote... but in the face of taking psychotropics at own risk, she might want to try that first.
Sorry to hear about your condition :( I really hope you find relief in new drugs. Many people here by their comments have no idea what a chronic migraine looks like.
Was about to comment the same. I had a severe headache this week, the second headache episode for this year. It's not chronic so it's off-topic, but I was wondering if the reason headaches are not catalogued here is because pain management clinics don't handle them.
I've always had headaches but some months are worse than others. I wear glasses for driving but generally not for every day wear (it's a psychological thing) and I've generally put it down to that.
After 3-4 days of a constant splitting headache which felt like I'd been hit with a cleaver, I noticed a lump at the back of my head/neck. This was finally enough to make me go to the doctor (obviously fearing brain cancer or some other deathly disease). The doctor diagnosed "Occipital Neuralgia" [1] which is basically the compression of one of the scalp nerves as it exits the spinal column. As I often end up slumped forward in my chair, head angled up, this was compressing those nerves and causing the pain. It had never occurred to me that the pain could have a physical cause. Since then, better posture control has meant very few headaches.
The lump it turns out is just a swollen glad, possibly from an unrelated minor infection or from the swollen nerve itself.
First of all, thank you for trying to help, and I'm glad they discovered it in time and I hope it stays under control.
While I cannot be sure that's not what I have, one side weakness doesn't sound quite like it and in addition, when I tried aspirin in the past it didn't noticeably affect the level of pain I'm experiencing (nor do other NSAIDs such as Ibuprofen and Naproxen, both however work great for me in case of a headache, which I rarely experience)
In 2008 or so, I ended up going to a neurologist because I was getting these brutal headaches that couldn’t be resolved by my GP. They couldn’t find anything either. And then I quit my job and no longer spent my days starting at a CRT under shitty fluorescent lights, and all the problems went away. Magic!
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