As you’ll know, I often write about trigeminal neuralgia. But my life has also been blighted by migraines since I was in my early teenage years. I will write more about my own migraines next week, but it’s always interested me that many people in trigeminal neuralgia support groups also suffer from migraine. This has led me to wonder if these two extremely painful and debilitating conditions could be linked.
Migraine and Trigeminal Neuralgia
I asked some trigeminal neuralgia sufferers to answer a survey so that I could get an idea of how many of them also suffer from migraines. Obviously, this wasn’t a scientific survey, but purely one of interest.
Out of all the respondents (746), almost 80% suffer or have suffered from migraines.
I’m not a doctor, but that number seems like a fairly high percentage and makes me think that there is perhaps a link between the two conditions.
If you have trigeminal neuralgia and haven’t already answered my survey, you can still do so by clicking here and I will update the result on this post in a few days time.
What is a Migraine?
It is thought that six million people in the UK suffer from migraines with more women suffering than men. According to the NHS in the UK, they affect 1 in 5 women compared to 1 in 15 men.
Just like migraine, trigeminal neuralgia affects more women than men, however, it is a much rarer condition.
Click here to learn more about Trigeminal Neuralgia
Migraines Are Not Just Headaches
Migraines are not just headaches. They can be one of the worst types of pain to experience. Migraines are extremely painful, throbbing headaches that are normally felt on one side of the head. If the migraine is long-lasting, the pain can often swap sides.
A migraine can last from a few hours to a few days. Some people may have a migraine only very occasionally, but others may suffer from regular attacks. In some cases, they suffer from chronic migraines meaning that they suffer several times a month.
People can often sense that they’re going to get a migraine prior to it starting. They might have heightened senses and food cravings for as much as a day or two before it begins. They might also have early symptoms such as tiredness, yawning, irritability, low mood, feeling detached, feeling hyper, passing more urine than normal, diarrhoea or neck pain. Keeping a diary can help track those symptoms.
Other Symptoms Which Can Accompany a Migraine
During the migraine, as well as the throbbing headache, sufferers might also have:
- An aura
- Nausea and vomiting
- Increased sensitivity to noise, light and smell
- Dark or puffy eyes
- Runny or blocked nose
- Blocked ears
- Tinnitus
What is a Migraine Aura?
About one in five migraine sufferers experience an aura. It is normally felt about half an hour or so before the headache starts therefore it can serve as a warning so that the person knows to take medication.
Occasionally an aura may cause speech difficulties or muscle numbness or weakness, but most often it causes distorted vision. Bright sparkling zig-zags around a blind spot or blurred vision are most common.
The aura usually lasts for 20 – 30 minutes before the headache starts. But for some people, the aura can last longer or it can come and go throughout the course of the migraine.
In some cases, a person can get the aura without a headache developing. This is called a silent migraine.
A visual aura is disturbing and can be very distressing. It can be seen even when the eyes are closed and for some people, it can appear through the night while asleep and the sufferer wakes with a migraine.
There are simulations of visual aura on Youtube. As a migraine sufferer, I don’t like looking at them because they make me feel as though a migraine is starting, but they can help other people understand what it’s like.
Migraines are Debilitating
Migraines are truly debilitating. Even with medication, people are in agonizing pain and often need to spend time in a darkened, quiet room for hours, possibly days in some cases. But it doesn’t end when the actual migraine ends. Afterwards, many people suffer from a postdrome migraine for several days, feeling exhausted with achy muscles and brain fog.
What Can Cause Migraines?
Migraines can be hereditary, hormone-related or they can be brought on by stress, lack of sleep or hunger.
It was believed that certain foods could trigger a migraine, but according to The Walton Centre, an NHS hospital in England which specialises in brain and spine issues, trigger foods rarely exist.
It was also previously thought that a migraine was caused when blood vessels in the head narrowed then became larger but this theory is also now thought not to be the case.
The Link Between Migraine and the Trigeminal Nerve
Scientists now believe that a migraine is a disorder affecting nerves in the brain.
The nerve being affected is the trigeminal nerve which is the same nerve that causes trigeminal neuralgia.
The Association of Migraine Disorders writes that migraine is a problem with faulty wiring within the trigeminal nerve.
The Cause of Trigeminal Neuralgia is Often Unknown
Many people who suffer from trigeminal neuralgia do not know why. There is no obvious cause for some of us, myself included. But I wonder if the faulty wiring which is now known to cause migraine could also be causing trigeminal neuralgia? Or is it just a coincidence that so many trigeminal neuralgia sufferers also suffer from migraines?
Personally, I don’t think it’s a coincidence. I think there could be a link, but I’m not a doctor. I just know that these are two extremely painful, life-changing conditions. And I hope that one day, doctors are able to figure it all out and help people more.
Useful Links
NHS
The Walton Centre
The Association of Migraine Disorders
Frozen Mind & Tone Travels are two other blogs with useful information about migraines
Anna Williams, a TN sufferer, has recently written a post on Migraine.com.
If you suffer from either of these conditions, I’d love to hear from you. Please leave a comment below.
Take care and stay safe.
Hi I do suffer from Facial Migranes! And Trigmenal Neuralgia and there needs to be better services worldwide for sufferers. I do understand things take time…..
Hoping one day that people/family will have better understanding of what we go through having either one or both of theses debilitating conditions. Hopeful.
Hi,
I am very interested in this as like you I suffer with TN and migraines. What I find even more interesting is that my migraines started and were troublesome during puberty and then went in my early twenties only to return when I started going through early menopause at 40. Within a couple of years of starting menopause my TN started…. like you say I am no doctor but I do wonder if there is some link. Since having TN my migraines are on another level and will often trigger extremely painful TN attacks. Mine always last 2 days too, guaranteed, I could put money on it.
There definitely needs to be more research, particularly in TN. As it’s quite rare it doesn’t get the investment and time that is so desperately needed ?
Thank you for your blog and posts, I really enjoy reading them.
From a fellow sufferer
Helen x
Hi
I’ve been a migraine sufferer since my early 20’s. Usually 1-2 a month. Use to deal with then in a quiet dark room, head compress and sleep. As I’ve got older I learnt to identify when a migraine attack is going to occur and I prepare. If the last 20yrs I have had several TMJ operations which have resulted in facial nerve damage and diagnosed trigeminal neuralgia. Now when I have. Migraine the pain is 10 fold what it use to be. So much so that the pain irradiates down the face into the jaw line. Is disabilitating and something that I now have to live with. A lot of the time my migraines are stress related. Therefore I look at ways to try and keep myself calm, which is not always successful but somewhat manageable.
I can remember as a child (age 7), staying in my dark room for hours with nausea and throbbing pain at least twice a month while living in a aura in between the migraines and during my adult years.
Finally at the age of 47 I was diagnosed with a benign lemon size skull base tumor at the Trigeminal nerve and undergoing a massive ear to ear craniotomy for removal.
Today I suffer 24/7 right face Trigeminal neuralgia with anesthesia Dolorosa. Overall I believe the migraines since childhood contributed to the tumor or visa versa. Unfortunately that’s a discussion my neuro-surgeon refuses to discuss.
I’m sure a lot are sadly going to relate to this. I suffer from chronic migraines, getting them on average 3 to 4 per week these days. However, I’ve had them every single day for about 3 weeks now and it’s worn me down considerably, so I’m glad you’ve noted how debilitating they are. Today is the first day without one and I’m celebrating! I don’t have TN so it’s interesting to see the relationship between the two and quite eye opening to think how many people deal with both; I can only imagine how difficult that must be. Excellent post, Liz!
Caz xx
I always learn a lot from your posts Liz and it’s so good that you’re writing about it and sharing it. I think I’ve had only a handful of migraines over the years so I’m extremely lucky. I can’t begin to imagine how hard it is to suffer that level of pain so frequently. Great post as always Liz! x
My understanding is that migraine is hereditary AND can be brought on by stress etc. As in, someone has the gene for it but may have either only had them very infrequently or not at all and then suddenly this changes. Someone without the gene therefore wouldn’t get it -but may get other conditions of course. I think the only exception is a brain injury. I’m saying this and happy to have a discussion – I realise I’m not citing a source at this stage!
I’d also like to agree with your overall topic for this blog; my (non-biological) uncle has TN and we have found many similarities between his condition and my migraine.
This is so interesting! I haven’t had migraines in a while (mine are/were very connected to my fibromyalgia, which is mostly controlled now) but TN sounds absolutely miserable.
Hi Liz, yes I suffer from both, but ironically both where only diagnosed at my MS diagnosis but I have had migraine for years, just been dismissed, the only difference now is the Aura can last half an day rather than the 10 minutes it used to xx
Trigeminal and occipital neuralgia with history of hormonal migraines. Really, really exhausting conditions.
I rarely have headaches but have all the other symptoms of chronic migraines. Almost daily, I have fatigue that makes movement challenging and weak muscles, I feel low and off – something doesn’t feel right in my head. While this is occurring there’s electricity shooting into my chin or near my ears. This is the first website that connects migraines to TN. I don’t have Trigeminal Neuralgia. My father had that. It made a grown man cry, but I do have an irritated Trigeminal nerve if I have electricity shooting into my face and my conclusion is that it’s triggered by silent migraines. As my symptoms are very unusual – arguably unique, I’m trying to find research that would connect the two.
Male 61. Over 40 years of migraines, long and weird story, no two ever alike with between 15-20/year. Now I’m on my 5th year of bilateral TN.. Nothing to say except, “it’s horrible”
I had my first migraine at 22. But I always had strange symptoms with them. At first, the migraines came with menstration. Over the next 30 years, I struggled, being treated like a hypochondriac or attention seeker. Neurologists would start to help then get frustrated and give up. I even went to the Mayo Clinic in 2014 after they noticed an artery was looped around the TN. Neurologists would tell me everything was migraine. I was put on every medicine, sometimes more than once. None of the neurologists would discuss this finding. I flew to another state to see a specialist who finally listened to me, but since I have cluster migraines also, no one wanted to do a surgery or more serious treatments. An ENT dr removed the TN branches around my eye to try to give me relief, it after 6 months it was back. I was in constant, level 8 or 9 pain. I finally found a neurosurgeon who listened and I had MVD last Dec. The TN pains are now coming back and he doesn’t treat, only does the surgery. I have yet to find a neurologist who will treat the TN. I’m trying my best to not lose hope, but 30 years of pain and doctors who know nothing about TN is taking its toll. Hopefully, this will reach someone who needs to know they aren’t alone. I never had that. Supporting each other is what keeps the hope alive.
I just found this website and appreciate the info! I began having symptoms 2 yrs ago and finally sought help from my MD, who ordered an MRI. I had goggles my symptoms and shared with my dr, who researched & agreed, however I ended up teaching out to a neurosurgeon who set me on tract and I found my neurilogist!
Question, my hearing is so dull, especially on the rt side where I have my pain. Does anyone else have this issue?
Hello, I think this is a UK site… I’m in the US. I came upon this whilst doing a TN/migraine search, because I’m experiencing BOTH, for the past few days. I have had migraines since pre-puberty (but only dx in my 30s); TN for the past few years– as a result of too much dental work? Hard to tell. I just got over three sinus infections, and now, sinusitis has reverted to severe migraine and TN! I increased my Carbamazepine to see what that would do; slight increase in migraine meds, too, Tolerable now, but need to get laundry done, and I feel like a vegetable, I suppose another neurologist will be the next step (though I’ve yet to find one I like). This migraine presented differently, as I awakened with pain in the back of my head! So I guess I need to get checked out, soon. BTW, I am now elderly: 73. Have had migraine now for 43 years. Thank you for this site, Blessings and may we all be pain free in 2023!