Living With Neuralgia – Occipital, Trigeminal & Glossopharyngeal Neuralgia

I have neuralgia – I have three types of neuralgia – Trigeminal, Occipital & Glossopharyngeal Neuralgia. It’s a struggle but what is neuralgia? What are my experiences with living with neuralgia? What treatments are available for neuralgia? I share all that I know, understand and have experienced in this post. So, keep reading…

Before we continue, please remember that I am not a medical professional, I am a patient – a curious patient looking for answers and various coping mechanisms which I share with you here, well at least everything I have experienced so far. If you experience anything I speak of then please speak to your doctor, like I did and get customised help – something we all deserve to get.

What is Neuralgia?

There are 12 pairs of cranial nerves attached to our brain. When any one of these nerves get irritated or damaged, sensations such as pain, burning, stabbing and even a sudden electric-shock type pain is experienced – This is neuralgia.

Now based on the area of pain, the type of neuralgia can be defined. For example, if the pain is

“intermittent or continuous nerve pain in an area of your skin previously affected by shingles”

then this is diagnosed as post-herpetic neuralgia.

(Ref.: NHS.UK)

Relevant Read:

• Magical Recovery from Shingles on My Face

My Experience With Trigeminal Neuralgia:

A few years ago, I experienced crazy, severe pain and burning on one side of the face – I really did feel like my face was on fire! It lasted a few minutes – in that moment I didn’t know how long it would go on for, what was happening and wondered what triggered it.

With my experience of having severe endometriosis pain, I knew that calming myself helped. And I did that here too. Slow, deep breathing with calming thoughts helped – the pain went, but the exhaustion lasted the day.

So what was this?

Well, with the topic of this section, I’m sure you know that it was trigeminal neuralgia that I experienced and subsequently, it got triggered at random times and still does – but now there are stronger reasons for this which I’ll explain as I move on to the other types of neuralgia I face (quite literally!)

One unusual, and maybe not-so-surprising trigger would be, when I apply a face-pack, I can’t let it dry completely, otherwise the skin on one side of my face hurts, so I tend to wash off my face-packs before it does because I do like applying homemade recipes which have really helped my skin issues.

If you would like to know more about my skincare regime, you can – I’ve put together some blog posts and each post includes a video too!

• My Skin & Hair-Care DIY Recipes

What is Trigeminal Neuralgia?

The trigeminal nerve is number five of the 12 pairs of cranial nerves attached to our brain (as explained earlier) and it helps us feel sensation on our face. And since these are in pairs, we have one on each side of our face.

Each one of these trigeminal nerves splits into three. Here’s how WebMD explains it:

“Each trigeminal nerve splits into three branches, controlling the feeling for different parts of your face. They are: The ophthalmic branch. It controls your eye, upper eyelid, and forehead.The maxillary branch. This affects your lower eyelid, cheek, nostril, upper lip, and upper gum.The mandibular branch. It runs your jaw, lower lip, lower gum, and some muscles you use for chewing.”

So now, when any of these nerves or its branches are irritated or damaged, we’ll experience trigeminal neuralgia. Pain, electric-shock type sensations, burning sensations and / or stabbing sensations are such symptoms that can be felt.

To know about treatments, I speak of the options a little further on in this post.

 

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My Experience With Occipital Neuralgia:

In 2021 a bone-spur (osteophyte) in the cervical region caused a tear which led to a CSF (cerebrospinal fluid) leak leading to intrancial hypotension from the loss of fluid in the brain, which means that the brain sagged. This caused a lot of pain – life altering and life threatening head pains.

If you wish to know more about this then you can here:

• The Never-Ending Head Pain: Status Migrainosus
• From Migraine, to CSF Leak, to Brain Sagging – My Journey

Now why am I sharing this?

Well, eventually when this hole was plugged through surgical intervention in April 2021, and when the cerebrospinal fluid was replenished in the brain, I still continued to experience continuous pain, sudden shocks of pain and head pressure.

This pain has been unrelenting even now in 2023, but when I was re-admitted in hospital in August 2022 to check if the leak had recurred (since the bone spur is still protruding into the CSF area in the cervical), we got to know that it hadn’t recurred and my brain and its surrounding areas were recovering well, but why was I still experiencing the pain?

Keeping my symptoms in mind and with the brain looking better, I was diagnosed with Occipital Neuralgia by my neurologist.

What is Occipital Neuralgia:

Occipital nerves are a group of nerves that arise from the C2-C3 spinal nerve that provide sensation at the back and top of the head.

Occipital neuralgia is supposedly a rare form of nerve pain that can lead to random and chronic head pain (personally, I don’t like to call it a headache, because it’s far beyond just an ache). Like trigeminal neuralgia that I was speaking of earlier, there will be sudden, sharp bouts of pain which can last anywhere from a few seconds to a few minutes and then linger on as it dulls down.

In my case, it’s possible that the brain sagging because of my CSF leak caused aggravation or injury to my occipital nerves which begin from the C2-C3 region of the cervical.

I came across this case report which states in its conclusion (amongst other things):

“Occipital neuralgia secondary to CSF leakage may be an under-diagnosed phenomenon. Pressure to the C2-C3 nerve roots during prominent cerebral descent may be the underlying headache cause.”

Also in addition to this, patients like me who have Ehlers-Danlos syndrome (EDS) are more commonly seen to have such head pain issues mainly due to the ligament instability found in the cervical region.

And according to centenoschultz.com, EDS can cause:

“Occipital neuralgia due to pressure and irritation of the lesser and greater occipital nerves.”

I guess I have a few things going against me when it comes to occipital neuralgia – enough factors (EDS & the brain sagging) giving it an excuse to trouble me. I’m trying my best to not be troubled by it, but it can cause enough debilitating hours in a day(s) that make life tougher.

Relevant Read:

• My Journey: Being Diagnosed with Ehlers-Danlos Syndrome
• 6 Things I Didn’t Know About Hypermobile Ehlers-Danlos Syndrome
• My Experience: Treatments to Manage Ehlers-Danlos Syndrome

My Experience With Glossopharyngeal Neuralgia:

Whenever I put the first morsel of food or drink in my mouth, as soon as it hits the back and base of my mouth and under the tongue too – I get this crazy sudden pain, as if someone has pressed a fresh bruise and then this electric current of pain is felt in my mouth. It’s a horrible pain. The initial pain lasts 20 seconds at the most, but the ripple effect of it remains for a while.

First this would happen randomly throughout the day whenever I ate or drank something, and now, it happens every time I have that first bite of every meal – there’s no respite.

After speaking to my pain management doctor about this, and looking at my, symptoms and history (of having Occipital & Trigeminal Neuralgia, the EDS & the brain sagging as explained earlier), I was diagnosed with Glossopharyngeal Neuralgia.

What is Glossopharyngeal Neuralgia?

It’s rare. Glossopharyngeal neuralgia is rare. Okay let’s backup a bit – the glossopharyngeal nerve is the 9th cranial nerve. It’s deep within the neck.

The MSD Manual explains:

“The glossopharyngeal nerve helps move the muscles of the throat and carries information from the throat, tonsils, and tongue to the brain.”

Now that should tell us how essential this nerve is for us to eat and swallow – but what is most concerning is glossopharyngeal nerve’s connection with the vagus nerve (the 10th cranial nerve) – back to that earlier link I just quoted from the MSD Manual says further:

“The vagus (10th cranial) nerve malfunctions at the same time because the vagus nerve and the glossopharyngeal (9th cranial) nerve exit the skull together. Thus, the problem affecting the glossopharyngeal nerve usually also affects the vagus nerve. The vagus nerve helps control the heartbeat. When the vagus nerve malfunctions, the pulse may be abnormal, and abnormal heart rhythms (arrhythmias) may occur.”

In general, there is no known obvious or consistently recurring cause, but compression of the glossopharyngeal nerve may irritate the nerve, or the Eagle Syndrome where the elongated bone in the neck (the styloid process) can cause pain too. And like with all other neuralgia issues, trauma to the nerve, a tumour and infections can be a factor.

How to Treat Neuralgia?

For all three types of neuralgia (trigeminal, occipital & glossopharyngeal) I have currently experienced three forms of treatment so far:

1. Medication:

I was put on medication for neuropathic pain (which I am still on). Neuropathic pain medication can also come in the form of antidepressants.

Initially I was on 5-7 different types of neuropathic pain medications and mentally it caused havoc! I was suddenly dealing with a chemical change that wasn’t helping my pain the way I was expecting it to, it was changing how I was feeling emotionally and I was exhausted yet unable to sleep.

The combination I was on didn’t work for me.

Now I am only on one neuropathic pain reliever medication which is also an antidepressant. This medicine does put me through a horrible mental slump but since I am aware of this, I know when that happens and why I am feeling so, so I’m doing my best to work with it because it does reduce my neuralgic pain. But this experience in itself requires a post of its own, which I promise to do because I feel this aspect isn’t spoken about and needs to be. So watch this space for more.

I was also given a transdermal patch used to treat severe pain (buprenorphine 5mg) which I had an adverse reaction to. It’s a patch that kicks in after 2 of the 7 days you’re on it – and when it kicked in, I couldn’t lift my head, I was throwing up and couldn’t even put a spoon of water in me without throwing up and it affecting my liver for a short time. Thankfully I realised how horrible this medicine was for me that I removed the patch before the doctor eventually advised it. It took two days for the medicine to leave my body – it was a horrendous two days – something no one should ever experience (yet I’m sure people do).

2. Physiotherapy:

My physiotherapist, through manual therapy, taping and ultrasound therapy, helps to loosen and relieve muscular tightness in the shoulders, at the base of the neck and the facial muscles. And just in case there is a need, it helps with lymphatic drainage too.

Here’s what the taping for my face looks like:

 

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A post shared by Shruti Chopra (@footprintsnoboundaries)

Relevant Read:

• Kinesiology Taping for Ehlers-Danlos Syndrome (with video)

3. Trigger Point Injections (TPI):

I experienced two rounds of Trigger Point Injections. These injections are given in areas where the muscle has become hard or tight – this helps to help relax those muscles because this tightness can cause further nerve irritation leading to more pain.

The idea was that by taking these injections, we would know how much of the pain is being additionally triggered by the tight muscle and how much of the pain is coming from nerve irritation or damage. I was given these injections at various areas near the shoulder, base of the neck, the neck (side & back the of it), jaw and face.

These injections were guided through an ultrasound / sonography machine – the tight muscles were visible through this. One injection was given as an anaesthetic to numb the area, which was then followed by a second injection which had steroids in it. This second injection would go very deep and regardless of the anaesthetic, I could feel the whole thing happen. Now that’s another thing with having EDS, local anaesthesia is rarely effective.

In my first round, I went through five steroid injections and in the second round, I went through six.

So did this all help? Nope, unfortunately it didn’t reduce my neuralgic pains but in fact, it caused tenderness, pain and it threw off my period cycle.

I have more about this experience in my next blog post: My Experience: Trigger Point & Nerve Block Injections for Neuralgia

Relevant Read:

• Why Do We Have Period Pains? Are They Normal?
• Pooping & Periods
• Everything Endometriosis
• PCOS v Endometriosis

4. Surgery:

I have not had surgery for any of the types of neuralgia that I have but it is an option to help reduce the pressure on the affected nerves. The type of surgery varies based on which nerve is being treated.

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Now that’s it for this blog post – if you have any experiences with any type of neuralgia or wish to share anything regarding this post or your experiences with chronic illnesses, then please feel free to do so in the comments section below.

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I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.

Thank you for reading!!