Despite taking medication correctly, trigeminal neuralgia can sometimes flare to unbearable levels. Things that normally help, like heat pads and cool packs, might not work. Sufferers use coping techniques like breathing, relaxation and distraction, but the pain still soars. They haven’t been able to eat, drink or sleep for days. They struggle to cope and begin to feel desperate. It is an exacerbation of pain that cannot be controlled. Can people get help in a trigeminal neuralgia emergency like this?
What should a TN Sufferer do in a Trigeminal Neuralgia Emergency?
What else can a sufferer do when their pain is so extreme? Should they go to an emergency department at a hospital when their trigeminal neuralgia is so out of control? Is there any point? Can a hospital actually help?
The answer is yes. People shouldn’t stay at home suffering if they are struggling to that extent. The pain cycle needs to be broken and hospitals have medication that can do that.
However, when people in that situation go to hospital, they very often get no help. Some hospital staff are judgemental and consider sufferers to be drug seekers and send them home.
Those patients are in severe pain. They are not seeking drugs – they are seeking help.
Some medical staff in emergency departments don’t know what trigeminal neuralgia is. Nor do they know how to treat it. They often suggest taking paracetamol, tylenol, ibuprofen or codeine. Standard pain medication will not help trigeminal neuralgia. Even morphine-based medication seldom helps.
This means that people with unbearable pain from trigeminal neuralgia are left to suffer.
New Trigeminal Neuralgia Guidelines Include Emergency Treatment
The European Federation of Neurological Societies and the American Academy of Neurology met in July, 2019 to prepare new guidelines on naming, diagnosing and treating trigeminal neuralgia.
One part of their report mentions emergency treatment for TN:
“Opioids are not usually effective for acute exacerbations of pain in patients with TN. In-hospital treatment may be necessary for titration of antiepileptic drugs (AEDs) and rehydration. The guideline also suggests that intravenous fosphenytoin or lidocaine may be useful.”
This is great news for TN sufferers, but it isn’t a new discovery. It’s been known for years that those, and other drugs, can help when a patient’s trigeminal neuralgia is out of control.
Striking Back
Fosphenytoin is talked about in the book “Striking Back! The Trigeminal Neuralgia and Face Pain Handbook” by George Weigel and Kenneth F. Casey M.D.
The book explains that most anticonvulsants (which are the standard treatment for TN) only come in tablet form and must be built up over several weeks. But Fosphenytoin can be given in quick doses by IV. For some patients, this can bring relief in as little as 15 minutes.
Fosphenytoin given in this way is not a maintenance dose. It is only for short term relief but it can often break a pain cycle. It can help people in a trigeminal neuralgia emergency situation.
Meds Which can Break the Pain Cycle and Can Help in a Trigeminal Neuralgia Emergency
For the last few years on my awareness page, End Trigeminal Neuralgia, we have suggested several medications which can help in a trigeminal neuralgia emergency. We researched and consulted with Dr Casey to obtain the details of medication with the correct dosage information. His suggestions in order of preference are :
- Dilantin by IV also known as Phenytoin (Anticonvulsant)
- Fosphenytoin by IV also known as Cerebyx (Anticonvulsant)
- Valproic by IV also known as Depakote, Epilim (Anticonvulsant)
- Solumedrol by IV also known as Medrol Dosepak, Medrol, Solu-Medrol, Methylprednisolone Dose Pack (Steroid)
- Keppra by IV also known as Levetiracetam (Anticonvulsant)
- Lidocaine either intranasal or patches (Local anaesthetic)
As with all medications, the results can vary from person to person. But there is more chance of the meds listed here helping than standard pain meds.
Those medications listed above might help to break the pain cycle in a trigeminal neuralgia emergency. There is a graphic on the End TN page with the names and dosage.
A doctor won’t look at our graphic and automatically dispense the listed medication. But patients should be aware that there is help available and they should ask for it.
Occasionally, some doctors in emergency departments do take notice. After researching the information, they have given their patients those meds. But most often, people are given a look that says, “I’m the doctor, you’re the patient”.
When nothing else works to break the pain cycle, why can’t doctors do some research to find out what helps? Why are patients being left to suffer?
Hospital Protocols
When a patient comes to the emergency department in pain, staff follow the hospital guidelines. That normally means prescribing basic pain meds then, if necessary, morphine-based medication. Those can work for many pain conditions. But they rarely work for trigeminal neuralgia.
I understand that hospitals need protocols. They can’t simply dish out medication that a patient requests. But sticking rigidly to those guidelines means more suffering for patients with extremely unbearable trigeminal neuralgia.
This has to change. Hospital protocols should include emergency treatments for trigeminal neuralgia.
How to get Help When Trigeminal Neuralgia is Unbearable
Always take medication correctly and try to avoid triggers because, obviously, it’s better not getting to the emergency stage. However, no matter what you do, trigeminal neuralgia can become unbearable. If you can put up with it at home, then do so because sitting in a busy, bright, noisy hospital waiting area for hours can exacerbate the pain. But if you are really struggling to cope with the pain, then it may be best to make a trip to the hospital. If the correct medication is given, the pain cycle could be broken.
Be Prepared
Nobody wants to spend time in an emergency department. However, if you need to, it’s good to be prepared for it. Talk to your GP, neurologist, neurosurgeon or pain specialist at your next appointment. Ask for written confirmation of your TN diagnosis and a written recommendation of treatment in an emergency situation.
At the Hospital
- Try to stay calm
- Take a notepad and pen so that you can write if you are struggling to talk or take someone with you who can speak on your behalf
- Show the medical staff your doctor’s letters with your diagnosis and suggested treatments
- Take a print out of information about TN or let the hospital staff see the Facial Pain Association’s website. The page I have highlighted explains that TN is not helped by standard painkillers
- Save the link to this post and the End TN graphic on your phone so you can explain what might help
- Back up the End TN information with some of the following links:
Report on new TN guidelines on Medscape.com
Emergency TN treatment – US National Library of Medicine
Case report on IV fosphenytoin – US National Library of Medicine
Japanese study on the use of Lidocaine
Learn to Advocate for Yourself
As patients, we need to learn a lot about our condition and its treatments. We also need to learn to advocate for ourselves.
See your GP or specialist if your pain frequently flares to unbearable levels. They may be able to adjust or change your meds to give better pain management.
If you receive the wrong treatment in a trigeminal neuralgia emergency or you are treated unprofessionally, write to your doctors and the hospital authority.
Have you gone to hospital with a trigeminal neuralgia emergency? Did you receive help or were you left to suffer? Please leave a comment below or on my social media pages.
Thanks for reading and sharing this post.
Medical advice – I am not medically qualified. The posts on Despite Pain are written using my experience and knowledge as a patient. They are not intended as a substitute for medical advice from a health care professional.
That is fantastic news that the organisations have met to discuss TN protocols for emergency treatment. Should maybe send a copy of the graphic to them and ask if they could do something similar to be distributed to every neuro dept, to be given to every TN patient
Hopefully, it will start to make a difference for patients.
Hi. I’m Sindi..I was diagnosed in 2013..I have ON, ATN, and TN..its the most horrific thing I’ve ever been through…I was 36 when I was diagnosed..I’ve had 4 brain surgeries and am due for another one soon, it seems the teflon they use for MVD (micrvascular decompression) surgery tends to attach to the nerves after a while..we’ll on some people, not everyone..but for me if it can go wrong it will..nothing has worked for me, I’ve been on all the recommended meds at the highest doeses possible..nothing helps..I love reading success stories..it feels good knowing some people to get relief..just not me..but I’m strong, I will survive this evil beast..For me, at the ER Morphine, adivant and benadryl are the cocktail I receive to breakthrough the pain..it is literally the only thing that will help..of course it really only helps for a few hours but long enough for me to get home and fall asleep..everybody is different and this beast treats each victim differently..I pray for relief everyday for everyone suffering..God Bless!!
I went to ER and received no help! I then returned home and self medicated. I slept for 18 hours and woke up pain free. I don’t want to ever go through that again!!
It’s terrible when they don’t help.
I went to the emergency room and had multiple attacks while there. They gave me lidocaine intranasal and it did not help. Finally morphine in an IV which provided relief. They prescribed oxcarbazepine and I took one pill with difficulty and was sent home. They did not seem to understand I had difficulty drinking and eating. I have lost over 10 pounds because of pain opening my mouth. 36 hours after morphine pain returned even though taking oxycarbzepine at 300mg every 12 hours
I was the same and if my husband was there and/ or had a signal. I would have gone home. I heard one of ae nurses saying I had headache
Thank you so so much for this. We think my partner is suffering with Trigemial Neuralgia and I’ve felt so helpless as to how I can help him. Doctors are not listening to him, keep fobbing him off so next time he has a flare up we will take him straight to A+E. Seem to get more answers and quickly that way!
I hope your partner can get more help soon.
Thank you, he has a Dr’s appointment next week so I’m hoping he gets referred for tests
I honestly can’t tell you how thankful I am for this post! I’m newly diagnosed (only 6 months in) and it’s been unbearable. Thanks so much for sharing, I’ve booked marked!
I hope it helps.
Liz, this is a brilliant resource for those with TN! I can imagine how poor to respond ER could be, especially being an ‘invisible’ condition and you, in agony and utterly fed up, end up with no power or influence. Being forearmed with knowledge, like with protocols, recommendations, medication suggestions, gives you back up and would be, I imagine, incredibly helpful in those times of need.
Caz xx
Thanks so much, Caz. Yes, hopefully if patients can arm themselves with information, they’ll get more help.
The clinical trial Using Fosphenytoin in a Trigeminal Neuralgia Emergency is located in Denmark. There are no U.S. trials. I also do want to point out that opioids do help a lot of people break the pain cycle, including me. Thank you.
Hi Howard, yes, opioids can help some people with TN, but for the majority, they don’t help at all. The clinical trial is being run by a doctor in Denmark, but he is part of the international group who have been discussing the new protocols.
Hi Liz, have there been any further developments on new protocols regarding the clinical trial in Denmark and the international group?
Thanks
Lyn
What a thorough post for those with TN. I loved the tip about taking a notepad to write stuff down. Practical ideas like this can really help people get prepared and help them cope during the pain flare. It sounds a scary and traumatic time and I feel for anyone going through this. xx
Being prepared can make a huge difference.
My full time job is in the clinical practice guidelines space. My company works to take the guidelines and make them easier to read for doctors. I do hope that something is in the works fro TN as there does seem to be a lapse in treatment protocols in the hospital setting.
That’s so interesting, Scott. I really hope that a company like yours works on these guidelines. Up until now, emergency treatment has never been mentioned in guidelines in the past, so this is a huge step forward.
This is not a condition I was familiar with, and I’m sorry you have to not only endure such pain, but also poor treatment from ER staff. I have Rheumatoid Arthritis, which is also painful when it flares, so I can relate to the struggle.
RA is an extremely painful condition. I hope you’re doing ok today.
I had MVD cause my pain was so bad now I have major headaches on the ton side and numbness and it hurts real bad do u have any answers
I’m having the same problems. The pain is extremely again. My neuro says I now have occipital neuralgia also.
It is at least good to know that meaningful research is being carried out to address this condition and the terrible pain that goes with it. In the meanwhile, preparedness is obviously key when you know there is a good chance of attacks occurring that require a person to attend hospital. Having documentation from your usual health professional outing the condition and recommended treatment when presenting at the hospital has got to be the best course of action.
I’ve gone to ER in US and ,the level of pain was off the charts ,the NP came in and said ,you’ll have to see your Md you go to ,nothing we can do here ,I felt like melting into the walls ,or crawling into a hole ,I called my Md myself ,was given toradol 50 mg iv ,helped slightly ,but not enough ..We need help badly .
That must have been awful for you, Debra. More can be done to help…it’s sad when that help isn’t given.
Yes, it’s so good to know about research.
I’m glad to hear that policies and guidelines are changing for emergency treatment. People who have TN should not have to suffer unnecessarily because others abuse the system. Thank you for all that you do to bring awareness to TN.
Thank you, Tracy!
Great and useful information even for those who don’t have TN.
Thank you.
Went to er couldn’t even talk pain so bad I brought 2 pages of notes was given fentynal & dermarol told them I still was in pain. Given prescription for oxycodone & lanocain. My dr gave me baclafin. I need new dr but where & what kind
I had no clue that opioid-based medications did nothing for TN and treating it. You teach me something every time, Elizabeth! How exciting that there are finally some breakthroughs and this is becoming recognized as a legitimate medical issue! I’m excited for you and others who have to suffer through these things and not be taken seriously so many times. It really is way too easy to put off the issue by labeling a sufferer as just a drug seeker.
It’s pretty bad, not just for TN suffers, but for many chronic pain sufferers. They are often classed as drug seekers if they go to ER desperate for help and get sent away.
Hi I’m newly diagnosed just two weeks ago and saw my go who told me not to suffer in pain go to a&e, went to a&e who told me they can not prescribe me anything and to go to my go. And to take 60mg codeine 4 times a day 2 sleeping tablets at night even though I told them the pain relief and the sleepers were not working.
I had no clue that seeking help for TN pain was so difficult. This must be so frustrating at times. I am happy to hear that the medical community is making strode, however, tonight this issue amd I hope something is resolved soon. Until then, it is so important to have people like you speak out for rare diseases. You do such an excellent job spreading awareness and information about TN.
Thank you, Lindsay!
Oh my gosh! I don’t have the problem that you have, and I’m so sorry that you do, but I was a migraine sufferer for over 20 years and I used to have to make regular trips to the ER for meds through an IV. I learned, like you did, to carry a note from the doctor stating what protocol would work for me. Also, they started to know me so it got easier to get help. But I remember being in excruciating pain and having to go into the bright lights and be asked a ton of questions when even breathing made my head throb more. And all the while vomiting. It was awful!
I wasn’t aware of this condition. It sures sound very painful and something that wont let you focus on work at hand. I hope the necessary steps are taken soon!
Oh, that must have been awful for you, Alexandra. ER is not a place anyone goes to through choice. I’m glad that you were able to get help. Migraines like that are horrendous.
This is eye-opening, I am blessed to be healthy, but wow, this shows there are some people going through some serious things out there. Thank you for sharing this, I have learnt something new today.
Thank you for reading and commenting.
There are many ailments out there that people are unaware of the treatment procedure and you have just opened our eyes to that of TN.
Thank you for all you do.
Thank you.
As a nurse I have unfortunately worked with other staff members who judge our patients who ask for pain relief. I was taught that pain is subjective-NOT objective. If a patient is telling you that their pain is not under control then it is not our place to judge them. I feel so sad for people who are unable to receive the proper care because a nurse is judging them for needing pain control. In the time and age we live in now with all of the pain relief options available there is no reason for people to have to suffer. Great tips here. Thank you for sharing!
Thank you, Megan. I appreciate your comment.
Fortunately I do not suffer from TN, but have just learned that my husband does. Thank you for all your advice and information. He is a retired dentist, so he has dealt with cases of TN in patients and knows how hard it is to find help and relief. Her’s hoping our GP can come up with good advice also.
Wow. I cannot imagine the trials and obstacles you’ve had to overcome in order to know so much about getting help when there’s an emergency. I’m so thankful for people like you; sharing what you’ve learned to help others!
Thank you, Kaye.
It’s so great that relief is available but it seems like so few professionals are willing to help.
That’s right, so many are unwilling to help.
I can’t help but ask myself where is the compassion of those health practitioners who will outright refuse a patient medication without a thorough checkup. It is such good news that this kind of patient neglect will soon be a thing of the past as new pain treatment guidelines for patients with TN are being discussed toward enforcement.
Hopefully, it will make a big difference to people with TN.
It can be frustrating when medical professionals assume someone in pain is just seeking meds and drugs, but I get the hesitation to not over-medicate. The pain sounds excruciating and if a hospital can administer relief in 15 minutes like you wrote, I’d definitely recommend the hospital instead of just dealing with it too
Definitely, if someone is struggling, they should get help at a hospital.
I can only imagine the frustration of going to the hospital and being labeled “drug seeking”. As a nurse, we see it all the time, so it’s a tough call to determine who is genuine and who is an addict. Hopefully, with the nationwide EMR’s, hospitals can swiftly see a patient’s history and know that the pain is real…I hope that for you!
I don’t imagine it’s easy for hospital staff either. It must be a difficult call to make sometimes.
That is golden information, I think more people should know about it to act if someone needs it near you, it is very important to give support to people in pain
Thank you, Lyosha.
I live in Canada and I have TN. I went to the hospital during a flare-up and was told that I was already taking the right medicine for TN so there was nothing they could do. From the sitting room I called my MD and he said there was nothing he could do either. It was a nurse who realized that I was in excruciating pain and got the doctor to give me a prescription of Tylenol with codeine. It didn’t help but at least she tried. My current MD then sent me a letter dropping me as a patient and said that he couldn’t help me anymore. I really hope that hospitals are made aware that we are not just looking for drugs and we actually need the help. Being armed with a letter from my neurologist is a great idea and I will do that as soon as I can. Perhaps we should have cards made up with our doctor’s signature so that all we have to do is show that and they are aware immediately what we are there for instead of having to talk. Thank you for your help.
Thank you so much for this information. I had a really bad flare up recently and was in so much pain I thought I was going to pass out. I broke down crying, but then stopped, because it was so painful to cry. Thank you for helping people like myself.
I was diagnosed with Trigeminal neuralgia 10 years ago. An Er nurse claimed that I was drug seeking when I was in crisis which resulted in me losing my RN license and I don’t know what to do now. I’m on ssdi now but it’s not enough to live on.
Very interesting read. I have not actually been diagnosed yet but it’s pretty clear that I have this condition.
There ought to be a word that’s stronger than unbearable because this was downright the worst pain I’ve ever been in. It continues.
First time I went to the hospital emergency The doctor seemed to know what to do and he numbed the entire side of my face which took away the pain almost immediately but it only lasted five hours. It was supposed to last 10 to 14 hours. Anyway he was good.
But then I had to go to the emergency again that same day, I had no choice. This time it took six hours altogether and they didn’t help me. They gave me IV pain killers two different kinds which needs neither of them worked. So I left the hospital still in pain and with no regular drugs either to try to ease the pain. I was very unhappy. I am now looking for a specialist.
went to the ER with pain back of left ear comes and goes feels like elect shocks. doctor gave me a EKG . then said look good and i could leave.. ask about my pain ? he gave me a muscle relacker..no help at all.
very good ,,thanks
Thanks for sharing a useful piece of information. Keep it up!
I am so glad you have this information available but my nursing home refuses to acknowledge that the emergency room can help me so I just have to suffer in excruciating pain. Thanks again for being there for me.