Chronic Migraines and Facial Pain Seemed ‘Normal’ to Me

That heading sounds ridiculous, doesn’t it? How can living with chronic migraines and facial pain seem normal to anyone?

But it did seem normal to me. Normal, simply because I had lived with both of those conditions alongside other chronic and disabling pain for so many years. Living with pain just seemed normal in a strange kind of way.

Unfortunately, living with pain is normal for a lot of people.

Migraines and facial pain seemed normal to me. Picture of a woman in pain.

My Migraines and Facial Pain Started When I Was Young

I experienced my first migraine at about thirteen years old. My migraines were hormone-related and became a regular feature of my life until I went through the menopause (thankfully early!)

I first remember having facial pain when I was in my twenties. It remained undiagnosed until I was in my early forties. For about twenty years, doctors had presumed my facial pain was related to my chronic migraines but it was, in fact, trigeminal neuralgia.

I’m now 54 and despite taking medication every day, I still live with the pain of trigeminal neuralgia. I also still get occasional migraines but they, thankfully, are more manageable now.

Click here for more information about migraines and trigeminal neuralgia

I Had Chronic Migraines With a Visual Aura

I can still remember my first migraine. I was sitting in an English class when I suddenly had a visual aura. At that time, I didn’t know what it was. I had a blind spot which was edged with sparkling, zig-zag flashing lights. It was terrifying. I had no idea what was happening. The aura lasted for about thirty minutes. I don’t remember having a headache that day. I only remember the aura, the fear and the relief when my vision returned to normal.

The migraines became a regular occurrence with that same visual aura, normally followed by a headache. There were rare occasions when I got the visual aura without a headache, possibly a silent migraine, but most often it was followed by a headache.

Migraine aura can be distressing and disconcerting. Dark starry sky in background

The aura was distressing and disconcerting. I could see it even with my eyes closed. There were times when I saw it when I was asleep. I hoped it was a nightmare but I woke up to discover it was real and my head was already starting to throb.

The Aura Returned Several Times Throughout My Migraines

For most people, the aura stops and the headache starts. But for me, the aura started again several times throughout the migraine. Sometimes the headache was bearable if I took migraine medication, but often it was so severe that there was little I could do other than lie still in a dark room. It thumped and it throbbed and felt as though my brain was being squashed in a vice.

Migraine - thumped, throbbed and felt as though my brain was being squashed in a vice. Pic of an apple being squashed in a vice.

My migraines were not only regular, but were long-lasting with the pain fluctuating in severity. Over the course of several days, I was never headache-free and that aura kept coming and going. When the migraine did eventually go, I suffered from a postdrome migraine, which I called a migraine hangover. I then had a day or two without a headache before those sparkling zig-zags appeared in my vision again and another migraine started.

I Also Had Agonizing Facial and Pain in My Teeth

From my twenties onwards, the migraines were chronic and lasted for days at a time but it wasn’t just my head that hurt – I also often had agonizing facial pain and severe pain in my teeth. My face ached, burned and throbbed. I often felt as though a horse had come along and kicked me, leaving my face feeling bruised and sore. An invisible sharp knife always seemed to be wedged between some of my teeth, while they were being twisted and pulled. I described my pain in this post.

Doctors told me the facial pain was part of the migraine. When I told them that my teeth were hurting, I was advised to see a dentist. But dentists could never find a cause for the excruciating pain in my teeth. They advised me to take over the counter painkillers (which never helped). One dentist even told me that some people get dental pain like this for no reason and “you have to just put up with it.”

I believed them. I felt as though I would need to just put up with the pain.

Migraines and facial pain seemed normal to me. Woman holding face in pain.

Migraines Disappeared with the Menopause

I went through an early menopause at around the age of forty, and thankfully, once those hormones disappeared, my migraines started to reduce. My doctor prescribed HRT because an early menopause can contribute to other health issues. But a few days after starting the treatment, my migraines returned, so I gave up on the HRT.

I was happy to leave my hormones in the past if it meant leaving those neverending migraines there too.

My Facial Pain Didn’t Disappear Along With My Migraines

With the migraines diminished, life should have become easier but it didn’t because I was still suffering from facial pain and that dental pain. The pain was worsening and was now constant. But doctors and dentists literally shrugged their shoulders when I complained about it.

The pain in my face and teeth was as debilitating as my migraines. It was as debilitating as the back pain which had forced me to retire when I was twenty-eight years old.

I was struggling to put up with it. If I was in the supermarket, the cold air hitting my face almost had me in tears. I was in agonising pain eating and drinking. Talking was a problem. Going outside was a problem. So many things seemed to make my pain worse.

The Facial Pain was Trigeminal Neuralgia

Eleven years ago, when I was 43, a new dentist took over my practice. I was convinced that my pain had to be dental related and I wanted the dentist to extract teeth. I was desperate.

Thankfully, after a thorough examination, the dentist didn’t extract any teeth. Just like other dentists, she found no dental problems, however, she did give me a probable reason for my pain. She told me that my pain was likely to be coming from a nerve in my face and sent me back to the doctor.

Everything fell into place after seeing that dentist.

I saw a doctor soon afterwards and explained to her what the dentist had said. Almost immediately, she told me that my facial pain was, in fact, trigeminal neuralgia.

Click here for more information about trigeminal neuralgia

Having a diagnosis meant that, finally, I was prescribed medication which helped. It didn’t take the pain away completely, but it reduced it enough to allow me to cope with it better. If only they could have diagnosed my pain and prescribed me with the correct medication years earlier.

Post explaining about classic and atypical trigeminal neuralgia

Why Wasn’t My Facial Pain Diagnosed Earlier?

Had my pain been classic trigeminal neuralgia with electric shock type pain, it might have been diagnosed earlier. But because my pain was atypical (constant, aching and burning), it was easier for doctors to just presume my facial pain was related to my migraines.

That shouldn’t have happened.

Doctors should have investigated and treated my facial pain properly thirty years ago. I should not have had to wait all those years before getting help.

Nobody Should be Told to Put up with Pain

Living with chronic pain of any kind, unfortunately, does become normal for many people. However, everyone should have a right to knowledgeable doctors, investigations and the correct treatments and medications.

Nobody should ever be told that they need to just put up with pain.

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4 thoughts on “Chronic Migraines and Facial Pain Seemed ‘Normal’ to Me

  1. Facial pain and migraines for so many years… I can only imagine, Liz. I have chronic migraines and consider myself lucky I don’t have facial pain, all the more so after reading this. You’re right with how disconcerting visual aura is with migraines can be, and migraines have a way of wearing you down considerably like with the postdrome that you also talked about.

    It’s sad that it’s not surprising you weren’t diagnosed with TN until your early forties, and by a dentist; even now I don’t think it’s an overly well recognised condition in the social or medical realm. Pretty sure my doc would raise her eyebrows if I mentioned it, before heading to Mr Google.

    To be told we simply have to put up with something can, I find, can leave you either feeling disheartened and like giving up, or angry and determined to find answers. With it taking so many years to get those answers and having so many bad experiences along the way, it’s not surprising these things take such a mental toll, too.

    Excellent post as always, Liz!
    Caz xx

  2. Darla

    Thank you for your post. Last week I went to the dentist knowing that I must need a root canal. He told me that my teeth were fine. After a weekend with larger bouts with pain, I went back. I saw a different dentist that did the root canal. Pain did not end.

    I will now go to my neurologist with more information. I wish I would have listened to the first dentist.

    On the plus side, since food is a trigger, I have cut back my food and I dropped a pants size.

    Thanks again for providing a post that let me know I am not going crazy.

  3. This is a really interesting post for me. I too suffered migraines from the age of 13, they barely appeared throughout my pregnancies so I assumed they were hormone related. My GP disagreed. Then after my menopause the migraines stopped, but I still have pain in my face. In fact I have only one back tooth left so they can’t blame my teeth anymore. I am convinced I have trigeminal neuralgia of the classic type. It can come and go and sometimes it knocks me for six and I can’t do anything. Now, I have a neurological auto-immune condition and simply every single ache or pain I get is blamed on my condition. So, thank you for sharing.

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