Does anyone have Trigeminal Neuralgia headaches?

Posted , 7 users are following.

Two years ago after acupuncture my TN went into remission.No electrical attacks or extreme pain on side of nose. Nothing but terrible headaches or migraine and searching for answers with doctors.I kept on taking the Tegretol or carbamazepine.Eventually I found out the headaches were ALSO TN. I have tried Topomax which turned me into a zombie.When first awakening its awful above left eye. This is short lived and after a while all the little headaches,including in the neck all get going for the day. This is a small price to pay for not having the electricity pulsating across my face

Hoping to hear from anyone with similar problems.i have been offered Botox. Best wishes

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10 Replies

  • Posted

    I've been woken up every night by what I believe to be cluster headaches recently. However... they are always on the left side whilst my TN is on the right so I don't think there's a connection. For me... I think it's this neverending heatwave in the UK. My room is like an oven at night. Not much I can do about it unfortunately.

    However... if you've been having headaches non stop since the acupuncture then it might not be cluster headaches. Have you tried seeing a Cranial Osteopath? They basically just massage your temples and the back of your neck and then hold your head for 30 minutes. And even though it all feels extremely silly... it really does wonders if you have any tension up there.

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    • Posted

      Thanks for replying and offering a solution.Apparently a 24/7 headache is beyond all the doctors I have seen.One suggested Cluster headaches but that is all. they are bearable but a neurologist said probably related to the TN.  A cranial osteopath could trigger the TN  off.I had a stress removing massage and felt great.But at Au$130 can't afford too often.So we battle on. Best wishes

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  • Posted

    Maggie, I had Mvd surgery in 2016 and have been having fairly painful head aches on that very side they operated on.... How many carbamazepine do you take? I am so sorry for your pain but I know TN can come back on either side so I would not hesitate to see some one ! God Speed ,Mallory
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    • Posted

      mallory,thanks for replying. So,how was it after surgery?Do you still get any electrical attacks?I will never forget the times.All because I used an electrical toothbrush.I am now taking 100 mg a.m and p.m.That sneaky TN bases itself in on side of nose or front of ear or tooth. I am in Australia and will be trying for op with Gamma Knife if it comes back. You are very brave having MVD surgery.Besr wishes 🐨

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    • Posted

      Maggie I went .  to the top rated nuerosurgical hospital in the United States,Mayo Clinic. My surgery was easier to recover from than any of my 4 back surgeries. Find the best hospital by researching on line and buy your plane ticket,go talk to the neurosurgeon, and just go for the MVD. Or better yet come to the states and get appointment at Mayo Clinic in Rochester ,Mn. and go for iT!!!!! dON'T WASTE TIME ON ALL THE OTHER STUFF IS MY ADVICE !  GOOD LUCK AND GODSPEED

                                                                                                                                 mALLORY

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  • Posted

    Hi ! Maggie i have had TN for over three years now and yes i also got the horrible headaches like if my brain wanted to explode all i got from my doctor was to take higher dose of carbamazepine i was taking up to 1,000 mg a day i have three kids you i couldn't function with that much medication so i downed the dose and this time it took me about eight months for TN to go away try CBD oil i bought some and it helps relieve the pain abit and helps to sleep at night is when i take it also the CBD ointment i rubbed on my head helped i hope this can help u abit .

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  • Posted

    Hi, Maggie,

    A very long story really short!

    Migraine with or without aura (very fickle!) from age 14 ish, ocular migraine, and about 15 years ago I started getting pain in left eye. The eye 'headache' got progressively more painful, more frequent, spread around the left side of face (and right, I feel blessed! 🙄wink, and a lot less responsive to pain control no matter what I took. By the time I was self medicating with husband's Tramadol and MST and still getting no relief I finally saw my GP. Now, being a nurse I did some pretty exhaustive research and ruled out cluster headache (my phone's predictive text wants to put bombs!! 😁wink, and a variety of other conditions, so I sort of expected TN. Anyhooo, medication worked, Neurologist confirmed diagnosis of TN and here we are now.....

    (I have bilateral TN affecting all three branches of the nerve). In the last year I get TN attack in the early hours after a trip to the loo and return to bed, usually on the left, it goes after an hour or two, then about 4 - 5 hours later I get an horrific migraine (usually with nausea, vomiting and the utter weak and feebles and just for fun TN at the same time). This eventually subsides after anything from an hour to a day or two. More weak and feebles. But the TN continues for several hours on and off. MRIs are clear.

    More research and I find that headache whether migraine or otherwise can occur with TN but is very rare. I recently tried one of the triptans (Sumatriptan) which if taken at the onset of the weak and feebles does prevent the migraine pain, and nausea and vomiting.

    My advice is to see a GP, or better yet a Neurologist, to get a better medication to deal with the headache.

    Carbamazepine works well for and for some it's effective against migraine but for many people the high dose and side effects are discouraging. Discuss your options with a doctor and hopefully you will get some relief.

    Best wishes

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  • Posted

    YueMing (jeremy) Ying proffessor

    This men treated my tn 6 years im free from it

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  • Posted

    hello Maggie, I have sufferd with migraines for 10/11 years ever since since I was around 9/10 I get the zigzag line's lasting about 40 minutes then after that I get very bad temple pain this also comes with the sick feeling. Now from the start of 2018 I had 0 migraines, instead I was having episodes of TN, I experienced 3 attacks then went to the doctors he said straight away I have TN he put me on 100mg carbamazepine told to increase daily then he sent me off.... so basically now I am thinking if migraines & TN are connected?

    Also over last weekend I had my first ever migraine since 2017, I really am at a lost and I dont think my doctor is taking me seriously..

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  • Posted

    Maggie,  I cannot help with your questions about migraine headaches but I do get Headaches which seem to be coming from my trigeminal problems  and these headaches only seem to occur when there is a low pressure in the weather. The only way to confirm Trigeminal neuralgia is to have a MRI to see if the trigeminal nerve is being compressed by an artery . In my case the trigeminal nerve had an artery that had wrapped around the nerve and seemed to be putting pressure in at least 3 places on the nerve. I then had The MVD surgery and so far only have problems with these headaches every now and then. Get a MRI and then you will know for sure. Good Luck and God Bless.   Mallory
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