How to get Help in a Trigeminal Neuralgia Emergency

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. They are feeling desperate. It is an exacerbation of pain which cannot be controlled.

How to get help in a trigeminal neuralgia emergency. Hospital help for unbearable facial pain which is out of control.

Can a Hospital Help When Trigeminal Neuralgia is Unbearable?

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 which 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.

Chronic pain and chronic illness sufferers classed as drug seekers. But they don't seek drugs. They seek help

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 and 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. Hopefully, this will soon change.

New Trigeminal Neuralgia Guidelines Include Emergency Treatment

The European Federation of Neurological Societies and the American Academy of Neurology met earlier in July 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.

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. 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.

Trigeminal neuralgia meds can be administered by IV to break the pain cycle

Other Meds Which can Break the Pain Cycle

For the last few years on my trigeminal neuralgia awareness page, we have suggested several medications which can help. 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 :

  • IV Dilantin also known as Phenytoin (Anticonvulsant)
  • IV Fosphenytoin also known as Cerebyx (Anticonvulsant)
  • IV Valproic also known as Depakote, Epilim (Anticonvulsant)
  • IV Solumedrol also known as Medrol Dosepak, Medrol, Solu-Medrol, Methylprednisolone Dose Pack (Steroid)
  • IV Keppra 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.

We made a graphic with the details including dosage, so that in an emergency situation, patients could show medical staff and hopefully be given medication which could help to break the pain cycle.

End Trigeminal Neuralgia is a facebook awareness page. We have never expected a doctor to look at our graphic and automatically dispense the listed medication. But we hoped to make patients aware that there is help available and that hospital staff would research the drugs, then prescribe.

Occasionally, some doctors in emergency departments do take notice. After checking it out for themselves, they have given their patients those meds. But in the majority of cases, 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 they check out the validity of the meds listed? Why can’t they do some research in the same way we did years ago? Why are patients 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. I understand that hospitals need protocols and they can’t simply dish out medication which a patient requests. But sticking rigidly to those guidelines means more suffering for patients with extremely unbearable trigeminal neuralgia.

Hopefully, once the new guidelines are in place, hospital protocols will include these emergency treatments for trigeminal neuralgia. This would help so many patients.

How to get help during an unbearable trigeminal neuralgia flare. Facial pain.

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 it beats sitting in a busy, bright and noisy hospital waiting area for hours. 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, but 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 and ask for written confirmation of your TN diagnosis and a written recommendation of treatment in an emergency situation.

At the Hospital

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.

Clinical Trial – Using Fosphenytoin in a Trigeminal Neuralgia Emergency

There is a clinical trial on the use of Fosphenytoin in an emergency situation taking place at the moment. The trial, being run by a doctor based in Denmark, is still recruiting patients. If you are interested in taking part, information about the study and contact details can be found here.

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.

52 thoughts on “How to get Help in a Trigeminal Neuralgia Emergency

  1. Trish

    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

    Liked by 1 person

  2. Robin

    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!!

    Liked by 1 person

  3. 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!

    Liked by 1 person

  4. 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

    Liked by 1 person

  5. Howard T.

    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.

    Liked by 1 person

    1. 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.

      Like

  6. 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

    Liked by 1 person

  7. sjd68

    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.

    Liked by 1 person

    1. 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.

      Like

  8. 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.

    Liked by 1 person

  9. Nicole Anderson

    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.

    Liked by 1 person

    1. Debra Laurence

      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 .

      Liked by 1 person

  10. 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.

    Liked by 1 person

  11. 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.

    Liked by 1 person

    1. 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.

      Like

  12. Lindsay Rae

    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.

    Liked by 1 person

  13. 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!

    Liked by 1 person

    1. 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.

      Like

  14. Sonia Seivwright

    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.

    Liked by 1 person

  15. Megan Kerry

    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!

    Liked by 1 person

  16. 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!

    Liked by 1 person

  17. 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.

    Liked by 1 person

  18. 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

    Liked by 1 person

  19. 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!

    Liked by 1 person

  20. Lyosha Varezhkina

    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

    Liked by 1 person

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