In my last post, I tried to explain what Trigeminal Neuralgia feels like through the words of other sufferers and a short video that I made. The condition is not well understood by non-sufferers. But it is also not well understood by some medical professionals. This, more than anything, is why trigeminal neuralgia needs awareness.
It’s Often Difficult to Diagnose Trigeminal Neuralgia
My own facial pain went undiagnosed for over twenty years. That’s a long time to wait for a diagnosis but my story is not unique. I have read so many similar stories from TN sufferers who filled in my questionnaire. When you read them, I’m sure you’ll agree that trigeminal neuralgia needs awareness.
#TNvoices
Cheryl Davis
“My pain began when I was 16 years old. It was undiagnosed for 54 years. The pain feels like lightning bolts. Those bolts strike and cut my face in never ending strikes.”
Anna – 20 years for a diagnosis
“My pain first started when I was 15, but it took 20 years to get a diagnosis. I have a constant feeling of electric insects crawling on my skin paired with stabs from an icepick.”
Paula Williams – 20 years for a diagnosis
“When I was 30 years old, my trigeminal neuralgia started but I wasn’t diagnosed until twenty years later. TN is like the worst toothache in the world and electric shocks that literally make you jump.”
Ann
“I have burning 24/7. And I have stabbing pain in my nose and eye as if someone is hammering an icepick into them. It took 17 years to get a diagnosis of trigeminal neuralgia.”
Why is Trigeminal Neuralgia so Difficult to Diagnose?
Trigeminal neuralgia is a rare condition which doctors study very briefly during their training. That’s understandable as they have an enormous number of medical conditions to learn about.
During their careers, some doctors rarely see a TN patient and some might see none at all. When they do see a patient with facial pain, they don’t automatically think of TN. They might think that the pain is caused by something more obvious like sinusitis, toothache, TMJD or a form of migraine. There are several equally painful conditions affecting the face. It can become confusing.
If the patient has electric shock type pain on one side of their face, some doctors do recognise it as classic trigeminal neuralgia. But it becomes more confusing if the patient is considered too young or if other symptoms, such as constant pain or pain on both sides of the face are thrown into the mix. (Trigeminal neuralgia can affect people of any age, can be constant and can affect both sides of the face.)
There are no Diagnostic Tests for Trigeminal Neuralgia
Even when they do consider TN as a diagnosis, there are no diagnostic tests. There are no blood tests or scans to confirm a diagnosis. An MRI scan is normally done, but that is mainly to rule out other conditions.
Diagnosis is based mainly on the patient’s description of the pain. (This blog post might help you explain your pain to your doctor and hopefully help them reach a diagnosis faster.)
Some People Have Been Diagnosed Quickly
On a positive note, some patients have been diagnosed quickly.
Carol MGrew
“It took two months to get a diagnosis of TN.
TN feels like someone is tasering you in the face. It can be non-stop during some periods and other times, it comes and goes.”
KZR suffers from Atypical Trigeminal Neuralgia on the left side of the face and was diagnosed within three days.
“My pain is constant and burning with occasional flares. The pain is centred around my cheek, temple and leads into my nasal area. During flares, my pain also occurs around my eye area, upper lip and lower lip. Very rarely is my pain less than 6/10. I don’t remember the last time I had a pain free day.
I was lucky. On the third day of suffering from pain, I was diagnosed in my local ER and sent to see a neurologist.”
Getting a Correct Diagnosis is Crucial
Patients need a correct diagnosis in order to get the correct treatment.
KZR really was lucky to be diagnosed within three days. That is fairly rare.
Trigeminal neuralgia is not easy to treat, but anticonvulsant and/or antidepressant medications can help many sufferers. But people are sometimes prescribed standard pain meds or told to take over the counter medication like paracetamol or aspirin.
Lyn Brown
“I was told to stop my current medication (anticonvulsants) and start taking up to eight paracetamol every day instead.”
Paracetamol will not help trigeminal neuralgia. But more worryingly, the doctor actually wanted to stop this lady’s prescription for her anticonvulsant meds. Stopping anticonvulsants abruptly is dangerous. (Lyn knew that this doctor was giving bad advice, but not everyone would.)
Support for Trigeminal Neuralgia Sufferers
After a correct diagnosis is made, you would think that the correct treatment would be given. You’d also think that the doctor would be supportive. Some people are lucky and have excellent doctors who go the extra mile. But that doesn’t happen in all cases.
Some sufferers were diagnosed then told to research the condition on the internet. We do have information at our fingertips nowadays but it can be frightening and it’s not always accurate. Doctors should be taking the time to inform and support their patients.
Mel was diagnosed with trigeminal neuralgia two years ago
“I had bolts of lightning going through my head and cheek. At an emergency appointment, my GP prescribed cocodamol painkillers which didn’t help. I returned and asked for a brain scan. He sent me to a neurologist who diagnosed TN. But he didn’t explain anything. When I saw my GP again, he said he didn’t know much about it, so I should just google it.”
Emergency Treatment for Trigeminal Neuralgia
In an older post, I wrote that trigeminal neuralgia can become so out of control that normal medication doesn’t help. People sometimes need to go to a hospital for emergency treatment but they rarely get the help they need.
IV Meds Can Help During a TN Emergency
There are IV medications that CAN help some people in an emergency situation. Click this link to learn more: Emergency treatment for trigeminal neuralgia
Anonymous
“I had been getting lightning blows for days. My meds weren’t helping. ER said I was a drug seeker and told me to go home. I begged them to admit me and knock me out. They didn’t.”
Cathy Lawling has lived with TN for 22 years since she was 40.
When I had to go to the Emergency Department, I was treated as though I was searching for drugs.
Melanie
“ER was very unhelpful. The doctor said, ‘Neuralgia is not really pain. It’s more like pins and needles.’
My pain feels like an ice pick is being forced up through my gums into my cheek with intermittent electric shocks.”
Sam went to the ER a few years ago and sees no point in going back.
“They told me I was wasting their time. My pain was off the charts. I don’t think they knew what TN was. They told me to try Tylenol. (For this!) Eventually, they gave me morphine and said they could do no more for me. The morphine didn’t even stop the pain.”
Some Emergency Departments do Help TN Sufferers
Ending on a positive note. Some emergency departments do help.
The emergency department helped Jessica Mortensen
“They’ve asked what has helped me previously and contacted my neurosurgeon for direction.”
Awareness Can Bring Understanding
Awareness about trigeminal neuralgia is needed because it can bring understanding. Understanding can bring hope.
Naturally, sufferers hope for a cure for trigeminal neuralgia. Who wouldn’t? But at present, people aren’t being diagnosed correctly or quickly enough and many people are not even receiving treatment that is currently available.
There are many good doctors and many TN patients are receiving good care. But too many are not. The medical profession needs more education about this cruel condition. Sufferers need more help. They need a faster diagnosis and they need to be prescribed the correct medication.
Trigeminal Neuralgia Awareness Day is on the 7th of October. But that is just one day – trigeminal neuralgia needs awareness every day. Please share my post so that TN Voices can be heard loud and clear.
Thank you again to all the contributors. I appreciate your input. Please check out my Pinterest, Twitter and Facebook pages for more #TNvoices posters.
Have you struggled to get a diagnosis or the correct medication? Please let me know in the comments section below.
Dealing with the lack of knowledge from some medical professionals is tricky – we need to be powerful advocates for ourselves
Trigeminal neuralgia definitely needs more awareness. I only heard about it from your blog recently. It’s such a terrible condition.
Such a great article on something I never knew anything about. Thabk you so much for sharing!
I feel sad for those who have it and pray that they feel better. I’ve learned about trigeminal neuralgia recently and people should know more about this. it’s great that you are raising awareness about this.
I read your former post, and all this information is actually helping me soo much! I’m no doctor but my grandmother has suffered with that kind of pain an no doctors find an answer and that’s something that haunted her life since her 20’s maybe it’s time for us to look further into it. Thanks for sharing!
I’m sorry that your Grandmother has been living with pain like this for so long.
I’m so glad you post #TNvoices. I hurt for those suffering. Excellent post.
This is a great post. I personally have learned so much about TN from reading posts like this one in my blogging communities. That is one of the reasons I so appreciate the online community – it is such a useful tool to spread awareness for such important things like this. Keep doing what you are doing, YOU are making a difference!
Thank you, Lindsay. Where would we be without the internet?
I have a friend that suffers from TN, but I never knew how widespread the condition was. Thank you for spreading the word and making the public aware
I have only just been learning about this and it is so terrible that it has taken so long for some to get diagnosed. Thanks for sharing this!
I personally have suffered fromTN since my early 20’s. I used to sit with a pkt of frozen peas on my face to numb the shoting pain on the left side of my face. No diagnosis or treatment. Basic paracetamol and ibuprofen slightly helped. But 2015 I suffered a brain aneurysm leading to a left sided stroke. While in hospital I was seen by a neurologist whom prescribed Topiramate to hopefully prevent TN. I have had a few episodes during these past 4 years but NOW I have more control. Thank you forraising awareness for TN.J Briggs Ballarat Victoria.
I am glad your pain is better controlled now. Thank you for commenting.
Ignorance is sometimes not a bliss as we’ve been made to believe. Not knowing what is going on in your could be more depressing than treating the ailment itself. Thank you for sharing info about TN which I’m hearing for the first time.
This is the 2nd post I read about Trigeminal Neuralgia and before that, I had no idea about this condition.
Would love to help share about this condition in order to help spread awareness. I guess being more aware will help patients and doctors have the proper diagnosis faster. Twenty years of pain is no joke.
Thanks for writing about TN. My TN started 8 years ago on my husband’s 50th birthday. I felt a bolt of lightning from nowhere. I didn’t know what hit me. We thought I had a brain aneurysm. Tegretol is keeping it under control but I live in fear of it getting bad again.
Oh, I’m sorry. It must have been so frightening. I’m glad that medication is keeping it under control just now. Try to enjoy the good days.
I have been diagnosed with TN. I am too terrified of the medication my doctor suggested. It was said that I would have to alert every medical professional including pharmacists of the m⁷edication for it would interact with MANY other medications, both otc and prescribed.
I guess I was “lucky”, I was diagnosed after 3 months of pretty constant pain. Actually it only hurt when I smiled or laughed or talked or chewed or drank anything and occasionally for no reason at all. But my GP did diagnose it after she first made me go to my dentist to make sure it was not tooth related. My dentist found no issues so I went back but the GP had me take various pain pills that didn’t even touch the pain. Eventually got to the Gabapentin that is for seizures and kept upping the dose until she finally sent me to a neurologist who started me on Trileptol with the Gabapentin which does seem to stop the pain but the combination makes me dull and exhausted and at times I feel like I need to be in memory care as I am forgetting everything and everyone. I have friends on Facebook that were former co-workers but I can’t remember where I worked with them or when. I used to have a great memory. So I have exchanged the pain for a dull and depressing existence. The pain was unbearable and when I had it I actually contemplated suicide because it never stopped. I don’t want that pain ever again, but I don’t want to live in a stupor either.
Like so many , my experience with doctors,especially neurologists is the same– Unable to diagnose and inept when it comes to management. In the meantime, however, I agree with learning to advocate for ourselves, spread awareness and educating others as to the devastating effects of this life changing disease.