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.

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.

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.

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 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

• Try to stay calm
  
• Take a notepad and pen if you are struggling to talk
  
• 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
  
• Keep 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
  Emergency TN treatment – Ronald Brisman M.D.
  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.

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.