Trigeminal Neuralgia and My Period

Posted 52 Comments by thepaincorner

I started my period on Saturday and I’m convinced that it set my facial pain off. This probably wasn’t the post you were expecting from my blog today and it wasn’t one I was expecting to write either. In fact, linking my menstrual cycle to my Trigeminal Neuralgia isn’t something I’ve ever considered before.. until this weekend.

I have been at a relatively low pain level for the last couple of weeks and the day my period started, I was in absolute agony.

I don’t usually get a headache with my period. In fact, I’ve actually enjoyed having a ‘normal person’ headache for the last couple of times I’ve experienced one with my cycle. I always get really bad stomach cramps, which can make me double over in pain. I get back ache occasionally, but I never get sore boobs. I’m aware of all the usual pain symptoms that are associated with getting your period and I always know what pain to expect.

This weekend, when my period started, my neuralgia decided to start playing up too. It was timed almost perfectly and, it’s only as my period has eased up and passed the heaviest days, that my facial pain has calmed a little too. Last month, I experienced the same thing, which I thought was just a coincidence at the time, but now I’m sure it’s something more. I started to look into this and I’ve come across a couple of things and had a few thoughts..

No one is really talking about this on the internet. I came across about two articles and a handful of forum posts, where other people are wondering if their period has anything to do with a neuralgia flare up.

The articles conclude that they actually don’t really know if periods can set neuralgia off. Which leaves me thinking I’ll have to conduct a study about this myself! I’ve seen a lot of ‘hormones might affect it’, but really, no one has a clue!

Sometimes I feel like no one knows anything much about Trigeminal Neuralgia in general. It’s all guess work, even by the professionals!

I feel like we need to get this conversation started. I am convinced that my period has had something to do with my pain this weekend.

Please tell me about your experience with neuralgia and your period, even if it doesn’t cause a flare up for you! Please let me know your thoughts about this topic! ♡

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Trigeminal Neuralgia

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52 Comments Leave a comment ›

  1. My wife has been battling TN for more than a decade, and we have observed a DIRECT correlation between her pain level and:
    1. The approach of her menstrual cycle – Her pain level would noticeably begin increasing about 7 days prior to starting her period. Some months it would end up being quite severe;
    2. Atmospheric pressure changes – At least two days prior to an approaching weather system, especially a low pressure system, my wife can predict its arrival. Her pain level begins to increase and this increase is DIRECTLY proportional to the severity of the low pressure system. A recent hurricane in our area proved to be exceptionally painful for her;
    3. Fluid retention – Any amount of fluid retention causes an increase in the level of her pain. This is so prevalent that she has reduced the amount of sodium and gluten in her diet (with positive results).

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  2. My wife has been battling TN for more than a decade, and we have observed a DIRECT correlation between her pain level and:
    1. The approach of her menstrual cycle – Her pain level would noticeably begin increasing about 7 days prior to starting her period. Some months it would end up being quite severe;
    2. Atmospheric pressure changes – At least two days prior to an approaching weather system, especially a low pressure system, my wife can predict its arrival. Her pain level begins to increase and this increase is DIRECTLY proportional to the severity of the low pressure system. A recent hurricane in our area (Nova Scotia, Canada) proved to be exceptionally painful for her;
    3. Fluid retention – Any amount of fluid retention causes an increase in the level of her pain. This is so prevalent that she has reduced the amount of sodium and gluten in her diet (with positive results).
    Thanks for documenting your observations, thoughts, and feelings regarding this horrible affliction. I’m so sorry that someone as young as you is dealing with this monster. Stay strong.

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    • I have Trigeminal neuralgia. i have kept a pain dairy for a year now. My husband happened to be looking at it as i was yelling while in pain mark this in the calendar now last month. He got to looking at it. He noticed i had alot more pain, and longer episodes the few days before i start my period and a few days after like clockwork for the entire year. I have break through pain with my tegretol every freaking month at my period. usually my pain will last from 15 minutes to 40 minutes at a whack. At my cycle, its 2 to 4 hours multiple times a day and night. i was aware this month amd watching for it, and when my common fixing to start my period PMS symptoms hit, so did my Trigeminal neuralgia! I just had pain hit me for 2 amd a half hours. Ugh Im gonna ask my doctor about hiking up my tegretol during these days at my period to help with the pain. My Trigeminal neuralgia pain diary from the last year agrees with your periods make Trigeminal worse thoughts. Im thinking of going on something to stop that period cycle hitting me to avoid the TN flare up. Crap is painful. tegretol helps it not be as painful as before, but man, its still freaking bad! I started out of the blue one day and went straight to bad. Mine has never let up or hit remission. It has hurt every day since it began years ago. With tegretol i feel it happening and my right eye will droop, i just dont feel pain. hopefully adding the 3rd pill a day at 200mg each will help the break through pain. I also noticed at ovulation time, i spike again and have break through pain. Usually not to bad at ovulation time though. Its my period that kicks my butt man!

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  7. I haven’t noticed a connection between my period and the flare ups but maybe because every time it has flared up my attacks were horrible almost the whole time Period or not. This time though the TN has been way better because of certain health choices I’m making and it’s amazing! It’s almost gone and I’m not on any medications. I do believe that it can be cured despite all of the negative info online about it being incurable. And you’re absolutely right the medical world knows hardly anything about it. It truly breaks my heart.

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  8. I just noticed that since I’ve been off of the Tegretol, I’ve gotten my period twice and both times I had a flare up on day 1. I’ve started writing everything down to do a little detective work myself.

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  9. Yesterday I posted your link to a support group in which I belong…Since we are all different, I proposed the question as, “Any other ladies notice that your TN spikes during the time which is the toughest part of your cycle?” Over twenty ladies so far say they suffer as well. Thanks for posting.

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  10. I have Endometriosis as well as TN. I never thought about them going hand in hand but I think you’re right cause my face definitely gets worse right before and during my period. I was just saying about how this past Sunday I was on the couch all day with a heating pad on my stomach, back and face. It was torture. Thanks for writing this article. I’m definitely more intrigued now.

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  11. I have felt that it’s inflammation throughout the bidet especially during the period. Everything swells. Prosaic, prednisone, Tegretol, all of that helps bring down the overall inflammation. If someone could investigate the internal working of inflammation and how it affects people with TN or ATN, we may find and answer and preventative measure. IMHO. Thanks.

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  12. The last few months my pain definitely spikes when I get my period and then gets better and then spikes again the couple of days after my period. I’ve been wondering the same thing!

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  13. Hi there,
    I am newly diagnosed with TN myself, and was curious about this topic too. So far for me, it appears that during my sugar pill week/ actual menstruation week (when the estrogen is presumably lower because I’m off the real pill), my TN pain is less or gone. Weird! But it kind of makes sense for my specific case as my gynecologist always tells me that the extra estrogen from my pill has probably exacerbated my migraines for years. Interesting stuff!

    TN seems to have few consistencies across everyone who suffers, and I agree that this connection between female hormones and TN should definitely be studied more! So far I’ve only found a few peer reviewed research publications on the subject. Good luck!! 💚

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  14. I’ve been tracking this for about 6 months now. Definite link between the two. At the moment I have little to no pain until about 5 days before my period and during the early heavy days then these fade. Thanks for raising this topic.

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  15. Yes I get twinges through the month but its liveable. Few days before my period it starts then constant until a few days after. My periods have been quite constant recently so Ive had a lot of pain. I seen a hormone specialist who put me on low Hrt.. the estrogen made it the worst its been for the whole 3 months I was on it. Now started depo to stop my period

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  16. Wow finally I know others experience this too! I’ve observed it for few months now. My TN pain starts on the first day of my period and it’s gone by the time my period is done . I used to only get pain when I was run down or immune system was down but now it seems it’s always when I’m on my period 🙏🏼

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    • Hi, i had been in remission for a year got the copper coil put in and my first period was very heavy and I’m sure it brought on the neuralgia again. Ever
      since every time I’m due on my period the pain flares up and will be ten times worse when I’m on my heaviest days then after its over the pain wears off a lot x

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  19. I have two attacks every month. One at the beginning of my cycle and one when it is ending. The pain progresses all day and moves from one side of my head into my eye and my upper jaw. Light and sound bother me. Sometimes it will end when I go to sleep at the end of the day. Other times it continues into the next day. Nothing helps it subside.

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  20. I am a 47 year old woman who for the last three periods consistently on day two, has suffered with severe neuralgia on the right side of my face, scalp and ear . The pain and sensitivity has been so profound that I have not been able to scratch my scalp and have to take analgesics every 3-4 hours consistently. The neuralgia usually last between 1 – 2 days and I have experienced such symptoms relating to my menstrual cycle periodically throughtout my adult life. I have also begun to experience some new symptoms 2-3 days prior to my last 3 periods, a searing pain in the upper left side of my abdomen and back and radiating into my left hip.

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  21. Yes even in my case TN pains increase with my periods and lowers down after 4-5 days. I wish there could be a permanent cure for TN. Although acupressure has helped a lot to me.

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  22. Totally convinced it’s hormone related. I’ve been suffering with ‘something’ for 11 years.
    I was told for 10 of those years it was TN, but now another specialist has said he’s not so sure. 😣 I am convinced that hormones, stress and feeling run down definitely make pain worse! Mine got more bearable when by fluke I started taking the POP pill.
    I’m thinking of looking into a diet that naturally reduces oestrogen….. any thoughts?

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  23. Yes. This happens to be too. I actually have a brain tumor that was pushing on my trigeminal nerve. The pain was occasional (also worse before my period like everyone here) and then really bad, daily, so I had brain surgery and that relieved a lot of the pain. Now two years after the surgery, I am starting to have the facial pain again on the left side, but only before my period again. It’s horrible. I hate it. I’m so sorry you all are suffering too.

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  24. I am convinced my TN pain increases just before my period! I have been diagnosed since February of this year, but I had intermittent pain for about a year prior (which I thought was dental). Interestingly, the pain initially started soon after I came off my hormonal contraception (combination pill). I’m currently taking carbamazepine / Tegretol for the TN pain which increases the metabolism of both progesterone and oestrogen, making the pill less effective. This seems to align with what someone else posted above that pain could be related to a decline in oestrogen.

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  25. I’ve just come across this post today after noticing a direct correlation between my worst episodes and my menstrual cycle. Neuros are not sure it’s TN but shocks in head and jaw are more painful just before or during my period.

    Seems I’m not the only. I thought my pain might be dismissed as just a migraine if I told my neurologist this. Wish I had anyway.

    Thank you for your post. Helps us know we’re not clutching at straws.

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  26. I’ve been diagnosed with TN for over 10 years now. I have known for a long time there has been a strong correlation between my period and the flare up of TN. Now I am closer to 50 my hormones are all over the place and my TN is playing up big time!
    Everytime I see my naturopath for this she puts me on a high dose of anti inflammatory medication and I go back into remission. This isn’t a coincidence, I know this is the cause of my TN flare ups.

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  27. I am a TN sufferer too, and have started clueing into this connection this year. I find that any ‘buffer’ to pain can start getting noticeably consumed as I become pre-menstrual then can be totally consumed by the time I start my period. I am dealing with right now. And googled TN and menstruation to find out what existed. This is how I found this.

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  28. I have had TN for 4 years and I noticed that in the past 2 years when my period is approaching my pain level increases. I spoke to my neurologist and she said there is no connection. I DO NOT BELIEVE THAT. I have been tracking my pain level increase and it is always around my period. I am currently on gabapentin and Oxcarbazepine (Trileptal).

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  29. I always suffered of really bad migraines on my period, but this month, it has progressed to TN – which I had no idea about until now.
    Same side as the migraines, intermittent throughout the day with very intense pain and burning. Last night, I thought I was going to pass out it hurt so much, I couldn’t feel my lips and it felt like my face was really swollen, though it was not.
    I’ll have to see how it evolves, but definitely linked to my cycle for now. Honestly, I’d take a migraine any day over this.

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  31. Hi
    I am convinced the TN pain is hormonal. I first started getting facial pains at the age of 12 – either side of the face and sometimes would go on for days, period or no period, it made no difference. When I was 19 my face swelled up with the pain I was experiencing – I looked like the Elephant Man; was hospitalized and fed penicillin, swelling went down after a week. Some years later when I was age 26 a very clever doctor diagnosed the problem and started me on Tegretol which was absolute heaven. Oh, the relief. However, as my menstrual cycle was anything but regular all my life and I sometimes would go months without having a period (not pregnant – never had children), I had a very early menopause at age 38-40. So I stopped taking the Tegretol and thankfully have not had a return of the terrible pain. I am now aged 78 and in perfect health.

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  32. I do currently have a connection between TN and my period. It hasn’t always been that way though. In my 20s and30s my TN tended to be impacted by external factors, brushing teeth, washing face, etc. Since arriving in my 40s the correlation has made itself apparent. So much so I brought it up to my neurologist and his comment was that it could very well be connected to my estrogen levels.

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  33. 100% when it’s hormonal week. I have the worse pain. I even started not taking my birth control placebo so I don’t have a period, and for one week, my pms week, the pain is the worst!! The flare ups are wicked! I keep track of it just to make sure something else didn’t trigger the pain-but nope. Hormonal time. 😦

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  34. My facial pain definitely increases with my period. Much like your recent disheartening neurology appointment, I had a doctor fixate on this ONE aspect of my facial pain and declare I had menstrual migraines. Frustrating, since I have pain through my WHOLE cycle. It just gets worse with my period. In my efforts to learn more, I have only run across this with one other person who gets anti inflammatory shots leading up to her period. It would be amazing if there was more research on how to help people experiencing this manifestation of TN.

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  35. Pingback: Pregnancy with Trigeminal Neuralgia – The Pain Corner

  36. From what I’ve researched, we tend to have a much lower pain threshold when we are on our periods so we tend to become more sensitive to pain than we normally are due to the rise in prostaglandins. Our skin also becomes much more sensitive and tender, which may explain why the trigeminal nerve tends to misfire a lot more and cause more pain. For example, my trigeminal neuralgia pain is not normally triggered by breezes like most people’s are. However, I have found that when I am on my period I cannot even walk underneath any of the air vents in my house while the AC’s on without an attack being triggered. My scalp also becomes super sensitive to the touch and will trigger horrific pain on my face if I even such as lightly brush my fingers through my hair. Brushing or even washing my hair also becomes an impossibility for the same reason (thank god for dry shampooing!). These are not generally things that I am unable to do when I am in the middle of a flare but when I am on my menstrual cycle the list of triggers becomes much longer and the attacks become more brutal.

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  37. I have just recently developed trigeminal neuralgia. I am so thankful I’ve come across this threat by accident. I wondered why it’d gotten worse around my period. The pain has been staggering; it’s difficult to explain to anyone who hasn’t experience it.

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  38. Hi! I’ve just recently put two and two together and realised my TN flare ups over the last few months have been in sync with my periods! The flare up starts a few days before my period does.

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  39. I’ve found your post very interesting. This week my TN has been really bad and I’ve had my period. My husband reminded me how bad it was last month too. I’d never thought to connect the 2 before. Im pleased I found this post.

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  40. I googled the question about TN pain worsening during cycle. And sure enough, I am not the only one. Thanks to all for sharing their experience. I’m most certain there is a linked and study needs to be done.

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  41. There have been a couple of studies supporting the link between TN flareups and menstruation.
    Trigeminal Neuralgia Exacerbated By Menstrual Cycle (P6.025)
    Anita Mehta
    Neurology Apr 2018, 90 (15 Supplement) P6.025;

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