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Solving my Headache Mystery

It started a year or two ago. It’s a deep pain originating where my neck met the base of my skull. This one-sided sharp pain often radiates to the front of my head around the temple area. Its not as painful as my worst migraine but disrupts my day and keeps me up at night. My abortives had no effect, but NSAIDs sometimes do. I have none of my migraine symptoms like photophobia, fatigue, brain fog, worsening pain with movement, or prodome and postdrome.

Does this sound like a migraine to you?

They happen about once or twice a month. I’ve started to catch on that these piercing headaches don’t seem like my usual migraines. I had a particularly bad one that kept me up at night, continuing into the next day when I had to help several customers at once at work, my head splitting and their questions coming at me simultaneously.

I felt that since I probably wasn’t dealing with a migraine, I should seek an answer.

The first doctors I saw didn’t have a diagnosis, but they did have a treatment plan. My primary care doctor recommended massage. I’ve been focusing on self-massage techniques for budget/time purposes. My chiro said he thought it might be a kind of headache that stems from my neck, and he did some helpful spinal adjustments and instructed me further on self-massage techniques and exercises.

I had an appointment with my headache specialist coming up, and I decided to bring this headache up to get a firm diagnosis.

After asking me about my pain and examining me, my headache specialist had a possible name for the pain I was experiencing: occipital neuralgia. The pain follows the pattern of the occipital nerve which starts at the base of my neck up over my head to my temple. It can be caused by a damaged or inflamed nerve. It’s not surprising to hear a nerve in my neck is unhappy. I constantly have a “crick” in my neck and have been to PT and chiro for neck pain over the years. So for me it’s likely a product of my chronic neck tension, but for some there can be more serious causes including post-injury inflammation or compression or even tumors.

Now that I have hopefully identified the problem, I have a new treatment plan that is different than my migraine treatment.

I will continue with the chiropractic treatments and self-massage and may splurge on a real massage at some point. I know that heat can help, unlike the ice I use for my migraines. I also can try a muscle relaxant, and my doctor told me if I was unsure if it was a migraine that it was ok to take my abortive. Some people with more frequent or severe occipital neuralgia can try nerve blocks, preventive medications, and even surgery.

I have a new respect for other headache disorders, and I believe trying to compare other types of headaches to migraines is like comparing apples and oranges.

It was good for me to learn that other types of headaches can be pretty painful, and just because it’s a one-sided headache doesn’t mean it’s a migraine. I’m thankful my headache specialist is helping me sort it out.

Now I want to hear from you.

Have you ever had a new symptom or issue that you wrote off as migraines, only to find out it was something different? Do you have trouble figuring out if a headache is a migraine or another type of headache?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Karen
    4 years ago

    Hello Lisa, I have had an almost identical situation with occipital neuralgia. I have had migraines for close to 40 years but in 2008 I had a bad case of Epstein Barr syndrome that left me with fibromyalgia and for some reason occipital neuralgia as well. When it first started the pain was throbbing 24/7 just on the right side with burning all the way up to the temporal area. I could get nerve blocks and it would go away for months at a time. Then by 2012 the nerve blocks no longer lasted for more than a day and no pain meds would touch the pain. And yes, I too tired warm compresses, muscle relaxers, etc. So in 2013 I had a RFA (radio frequency ablation) which was suppose to kill the nerve. It lasted for approx 4 months so I tried it again in 2014. That second time it only lasted a week. In 2015 I saw a neurosurgeon and he explained that the RFA treatments actually damaged the nerves causing phantom pain rather than killing them. At that, after several complications, in Dec 2015 I had a neurotransmitter implanted onto my occipital nerve that confuses the pain signals.
    It has been a long and arduous process and I hope to help at least one person to avoid some of the pain and trauma I went through.
    After everything, I have to say the pain is better. I no longer have the continual throbbing at the base of my skull and the burning sensation is gone. However, the base of my skull is still extremely tender and I can’t touch it at all. I am still taking opioids daily just to get through the day.
    But, if I can give you any advice at all, go straight to the neurotimulator. If I had, I believe the results would be so much better now. Good luck to you! I hope you can find a solution that works for you – don’t give up!!

  • Hari Emani
    4 years ago

    My story is different.

    I started to have headaches combined with body pains since 1996. No one could explain or give a solution until 2009. The pains incapacitated me, but never bed ridden. In 2009 when I met a doctor in Malaysia he said that I was dealing with fibromyalgia, (possibly a neurological disorder) and those headaches were part of the disorder.

    After that I changed lifestyle a lot by 2013 headaches and few more symptoms were gone. I Mostly consume organic millet, lots of greens, fruits, apart from flax seeds, plant based protein powder, natural multivitamins. Intermittent fasting is also helping me a lot. I took lot of time to adapt to the new life style. Now I am on the verge of complete recovery.

    Hari

  • qfv2wx
    4 years ago

    Hello. You have an interesting story. I have had weird migraines off and on throughout my life with a current diagnosis of vestibular migraine. But m constant complaint is the soreness in my neck C1-2-3, and the nerves which run over the left side of my head. Especially around my ear, eye and jaw. However, this last Christmas season I had a run on headache with vertigo, nausea, etc. which left me so sore I sought relief in hot packs. And that made me think I had neuralgia on top of the headache. The hot packs gave me more relief than anything! I cannot yet identify triggers for these things. And i am convinced now since this terrible episode that my vestibular nerve must have been sorely inflamed.

  • Tamara
    4 years ago

    I have a very similar headache to you but mine is daily and slowly getting worse. Left suboccipital (very bottom of skull) is the worse but both sides are sore if pressed. I have a misalignment of C1 that is aligned to the left side so I’m assuming it is causing the nerve or blood vessel to be pinched. I have researched cervenogenic headache and it fits to a tee – similar pain to a migraine, one or both sides at back of head/neck, moves forward to behind my head, moderate to severe (can be as severe as my migraine pain), worsens with movement, pain can come before a migraine (as they can be a trigger). I have had one set of trigger point injections in those areas and actually got a full 2 hours of 1-2/10 pain for the first time in a year ….. If I can survive long enough this week and out of the hospital (had to cancel an appointment last week because of that) I will get them done again. Cyclobenzaprine (muscle relaxant) does help somewhat. I’m not sure, the pain is continuing to get worse, one sided so maybe migraine flare on top of it? And the nausea is starting so if it goes to a migraine level I’m too late to take imitrex.

    Although I explained all this to my neurologist and he said that was possible but thought my chronic headache was in fact a mild migraine that never goes away. Sigh

  • dashaway
    4 years ago

    I have a very similar experience to yours – and it took years for me to get the headache specialists not to call it a migraine. They initially thought it could be occipital neuralgia as well. Look up “cervicogenic headaches.” See if that fits better. That was my final diagnosis – and the cause can be poor posture, spine alignment, and muscle spasms. The actual headache is just a symptom of what’s going on in the rest of your body. Physical therapy, TENS units, and ultrasound were very helpful. Pain meds did nothing. Now I take Dihydroergotamine Mescalate HCL injections if I feel it coming on and can’t get the spasms to start (for me, starts in shoulder blade, moves up neck, through back of head, over forehead/eye). I’m completely incapacitated for 3 days and vomiting.
    Chances are high that you don’t have occipital neuralgia – it’s so exceedingly rare and is usually caused by a blood vessel being compressed (so you’d be in pain more often, more consistently). But it’s good they are taking it seriously and ruling it out.
    Now I go to a chiropractor who specializes in cervicogenic headaches and I’m much more focused on proper posture and how I’m holding my head in relation to my neck. Hope this helps!

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