Trigeminal Neuralgia

In this episode we will discuss Trigeminal Neuralgia with Pamela from British Columbia, Canada.  This painful and rare condition has no cure but Pam gives us tips on dealing with severe facial pain.

Transcript:

s3e1 trigeminal neuralgia.mp3

 

Lita [00:00:07] Hello and welcome to another episode of podcastDX. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. I'm Lita and one of our co-hosts. Ron is not with us today.

Jean [00:00:22] And I'm Jean Marie.

Lita [00:00:23] Collectively we are the hosts of podcastDX on today's show we are speaking with Pamela. Pamela is joining us once again from Victoria British Columbia in Canada.

Jean [00:00:35] And we actually had the honor of speaking with Pamela last week regarding fibromyalgia this week. Pamela is here to tell us all about her experience with the trigeminal neuralgia.

Lita [00:00:45] Well ok that's a mouth full. (Laughter) In case you missed last week's episode Pamela is happily married to her amazing husband Ray and they're the proud parents of two grown kids with three wonderful grandsons. Pamela worked for years whilst battling with pain from fibromyalgia and osteo arthritis while employed as an administrative specialist. She was also a certified event planner with her career behind her now and she is on long term disability. She is now a blogger. I've always wanted to blog. I'm not into blogging but maybe you can get me going on it (laughter) she really, I need to know. She writes about chronic pain chronic fatigue fibromyalgia an invisible illness in addition to blogging. Pamela is an active volunteer with the patient volunteer network or PVN in British Columbia. Outside of the PVN she has also done volunteer work for Island health as a patient advisor. She was on the advisory committee for opioid guidelines in Canada and volunteered this summer with the downtown Victoria Business Association Buskers Festival.

Jean [00:01:56] Hello again Pamela and I, might I say that I'm just exhausted hearing about how much you do. Welcome back.

Lita [00:02:03] Yes.

Pamela [00:02:04] Thanks so much for having me back again.

Lita [00:02:07] Pamela I was reading over the data sheets for the conditions that have placed you on the long term disability list. And I would venture to say that you have your plate full. We have....

Pamela [00:02:18] I do.

Lita [00:02:19] ...(laughter).

Jean [00:02:20] Yeah.

Lita [00:02:21] ...Separated the two major conditions into the two separate episodes. We covered fibromyalgia last week and that leaves this week with trigeminal neuralgia. First to give our listeners an idea of exactly what we're talking about what is trigeminal neuralgia.

Pamela [00:02:37] Trigeminal neuralgia is a chronic pain condition it involves the areas inerverated by the 5th cranial nerve so the area of the body involved is the face it can cause severe pain even when doing simple things like brushing your teeth shaving putting on makeup touching your face eating drinking speaking or even when something as simple as a breeze whispers across the face.

Jean [00:03:04] Oh Pamela you mentioned the fifth cranial nerve and what is that exactly.

Pamela [00:03:12] OK so the fifth cranial nerve is one of the most widely distributed nerves in the head.

Jean [00:03:17] OK.

Pamela [00:03:17] So the classic type of trigeminal neuralgia disorder called Type 1 or TM1 causes extreme sporadic sudden burning or shock like pain which may last from a few seconds to as long as two minutes per episode.

Lita [00:03:32] mm mm.

Jean [00:03:33] oh God.

Pamela [00:03:33] And episodes can often come in a series of attacks that lasts for several hours.

Jean [00:03:38] ohh.

Pamela [00:03:38] But I have something called atypical TM.

Jean [00:03:41] ok.

Pamela [00:03:41] Which is when the pain comes in a long lasting wave...

Jean [00:03:44] ohhh.

Pamela [00:03:45] ...Instead of a short burst. So for me no but for me it's like a hundred little cameras there hitting the same area of my face...

Lita [00:03:52] Oh my gosh.

Pamela [00:03:53] ...For hour after hour.

Lita [00:03:54] oh my God.

Pamela [00:03:55]  my episodes tend to last for eight to 12 hours at a time.

Lita [00:04:00] Oh.

Pamela [00:04:00] They start just under my right cheekbone and then it spreads first to my sinus cavity then down towards my jaw. And I often feel spasms in my esophagus as well.

Jean [00:04:11] Oh my gosh.

Lita [00:04:12] Wow.

Pamela [00:04:14] Yeah.

Lita [00:04:14] Wow.

Pamela [00:04:15] Not fun.

Lita & Jean [00:04:15] No.

Jean [00:04:16] Wow.

Lita [00:04:17] Wow. I mean my mouth hurts just.

Pamela [00:04:20] yeah.

Lita [00:04:20] Listening to you.

Jean [00:04:21] That's that's awful.

Pamela [00:04:22] Mmhmmm

Lita [00:04:23] Pamela what causes Trigeminal neuralgia.

Jean [00:04:25] And how can we avoid it.

Lita [00:04:27] Yeah.

Pamela [00:04:27] Well there's actually several possible causes for trigeminal neuralgia. So it sometimes begins as the result of the nerve sheath being too close to a blood vessel in the neck area where it exits the brain stem.

Jean [00:04:42] ok.

Pamela [00:04:42] In other cases it can be caused by things like multiple sclerosis.

Lita [00:04:46] Which also takes away the sheath, right.

Pamela [00:04:48] Yeah exactly. Another reason for this condition can be a tumor pressing on the nerve or it might be the result of the wearing down of the sheath of the covering on the nerve. It could be the result of physical damage to the trigeminal nerve perhaps from the sinus surgery or an oral surgery or stroke or other facial trauma.

Jean [00:05:10] ok.

 

Pamela [00:05:10] In my case we suspect that the nerve is rubbing against something based on the MRI scan that I had done.

Jean [00:05:17] OK.

Lita [00:05:18] Wow can you tell us. I mean you know obviously the pain right. Is that what led you to to find out what this diagnosis would be.

Pamela [00:05:27] Yeah. The reason I was sought treatment was because I was suddenly having these pain episodes in my face. And after the first one or two I realized they weren't just sinus infections because I wasn't showing any other symptoms that you would typically get with an infection.

Lita [00:05:42] ok.

Pamela [00:05:43] So I saw my doctor and I described the pain. And I was diagnosed TM based on the description. And then when I was first put on medication it stopped the episodes from happening and that's when we knew that we'd made the right diagnosis.

Lita [00:05:56] OK. Is it just a nerve pain type of a medication then.

Pamela [00:06:01] Yeah. That's what we started with. One of the first drugs that they prescribed to. Yes.

Lita [00:06:06] OK. Well while reading about this week's topic I read that a person with trigeminal neuralgia might feel as if they had an abscess tooth or like you were saying a sinus infection. And since it can affect the jaw area it seems like that could make it a difficult condition to diagnose. I mean like is it a tooth is it.

Jean [00:06:27] Sinuses.

Lita [00:06:28] Sinuses. Is it Is it the gum you know. So was it it was not that difficult for you to get the diagnosis though huh.

Pamela [00:06:36] No like I said just describing the pains my doctor and how it flared into my sinuses first and then into my jaw helped him to realize that it wasn't an abscess in the jaw area.

Lita [00:06:48] Yeah actually you know what about a heart attack.

Jean [00:06:50] Yeah I'm you know yeah. You could have jaw pain.

Lita [00:06:52] You could have had jaw pain with a heart attack.

Jean [00:06:53] Sure.

Lita [00:06:54] There's a lot of things that.

Jean [00:06:55] Yeah.

Lita [00:06:56] They could have worried about.

Jean [00:06:57] well, yeah.

Lita [00:06:57] I'm glad the doctor thought about it right away.

Jean [00:06:59] you've had, Yeah. You had someone that really...

Pamela [00:07:01] Yeah.

Jean [00:07:01] ...understood what it was.

Lita [00:07:01] understood it right.

Jean [00:07:02] Yeah. And I understand that there are several tests that can be done to help determine the extent of the terminal neuralgia. Can you tell us a little bit more about this testing.

Pamela [00:07:11] Yeah. So in most cases the doctors start by asking questions about your symptoms and ask about your medical history. Then they usually perform a physical examination of the head in the neck areas including the ears the mouth the teeth and the temporal mandibular joint with the TMJ.

Jean [00:07:31] Right.

Pamela [00:07:31] And other disorders that may cause facial pain and mimic TM type pain. They'll ask questions about that. So these conditions need to be ruled out first before a definitive diagnosis was made. And then often what they'll do is they'll order a magnetic resonance imaging an MRI scan.

Jean [00:07:53] Ok.

Pamela [00:07:53] They do that to rule out the presence of a brain tumor or multiple sclerosis or other causes.

Jean [00:08:00] ok.

Pamela [00:08:00] And the scans can also determine whether or not a blood vessel is pressing on the nerves. And so that's what my doctor did was he ordered the MRI for me and that's where we could see how the nerve was being compressed.

Lita [00:08:12] OK. Wow that's quite a few tests. I know that when we were talking last week you said that during a procedure.

Jean [00:08:21] Something was leaning on a nerve.

Lita [00:08:22] Something was leaning on a nerve. Now could that have caused this.

Pamela [00:08:26] Yeah. Oh yeah. They they could see that the blood vessel is pressing against the nerve.

Jean [00:08:34] OK.

Lita [00:08:34] So it wasn't something that the doctor was leaning against. It's right now it's just a blood vessel. That’s pressing because I'm just saying like what made what made the blood vessel all of a sudden press against the nerve.

Pamela [00:08:44] You see they're not really sure.

Lita [00:08:46] OK .

Pamela [00:08:47] They're not really sure what's what's causing it to do that. And actually until I undergo you know some type of surgery they wouldn't be able to say for certain until that happens.

Lita [00:08:59] ok When I don't know if I asked when did this problem start compared to the fibromyalgia.

Pamela [00:09:05] I've had the TM for probably about 14 years now.

Jean [00:09:10] oh my gosh.

Pamela [00:09:10] And I didn't realize that I had it in the beginning simply because I thought it was a sinus infection.

Lita [00:09:18] OK.

Pamela [00:09:19] When I first had it and the episodes were really infrequent in the beginning so I just brushed it off. So when I started having them on a much more frequent basis then I knew that there was a problem. And that's when I went to the doctor.

Lita [00:09:33] got it.

Pamela [00:09:33] So I would say 14 years in total. But you know on a more frequent basis probably over the last four years.

Lita [00:09:41] OK.

Jean [00:09:42] ok And  Pamela you said that some medica.. Medications have helped a bit. Are there any other treatments available for patients with trigeminal neuralgia.

Pamela [00:09:50] Yeah. There are treatments for trigeminal neuralgia which can help to reduce pain and improve quality of life. So what they normally do is they start off with a medication called carbamazepine which is also known as Tegretol. That's the first drug of choice. And if that doesn't work or if it stops working as it did in my case the other drugs that they use are called lamatrine gabapentin and pregablin and then sometimes use Baclofen which is a muscle relaxant. And then I also took a drug called topiramate.

Lita [00:10:26] topiramate.

Pamela [00:10:26] which I don't take right now.

Lita [00:10:28] Yeah.

Pamela [00:10:28] Yeah. It's an anticonvulsant and that worked for me for a long time actually for almost two years. But it has stopped working and I am now at a point where I am having flare ups about once a week.

Lita & Jean [00:10:44] ohh.

Pamela [00:10:44] So yeah. And so at this point unfortunately I have no other drug options left. I even tried botox botox is often used as a last resort where they inject botox along the hairline not into the actual area where you have the infection but they do it along the hairline and that's done to try and paralyze the muscles that are flaring up from, from the nerve. But that was unsuccessful for me as well. So now the only option left for me is a surgical option.

Jean [00:11:17] Oh wow that's Yeah. You can't go back to a medication like if you're on a medication for sometime and it stops working.

Pamela [00:11:24] There's. Yeah. There is once medication stopped working that stops working and you can't go back to the old again. They just. They just don't work again.

Jean [00:11:35] Okay. Okay. And Pamela I really think we should let our listeners know that this is a disorder which is considered to be one of the most painful human conditions.

Lita [00:11:45] Yes.

Jean [00:11:46] And just reading that statement makes me really cringe. In your opinion how bad would you say the pain is.

Pamela [00:11:54] Well the nickname of this condition is the suicide disease. When I'm in a full TM flare up I'll be honest I want to claw my face off. The pain is a 15 out of 10. It is absolutely unrelenting. And that's the worst of it. If I knew I was going to get relief in just a short period of time it would be easier to bear. But when I get the telltale pulse under my cheekbone that a flare is coming up. I know that I'm in for 12 hours of agony. It's the most painful thing that I have ever experienced.

Jean [00:12:30] I'm so sorry.

Lita [00:12:31] Oh goodness gracious.

Jean [00:12:33] Yeah that’s.

Lita [00:12:33] Pam. And too bad they can't have like. I know that this...

Pamela [00:12:37] There's.

Lita [00:12:37] ...sounds bad, like put you to sleep. You know like put you in a semi coma. Knock you, you know go in for a shot. You know like you you go in for this.

Jean [00:12:44] Imitrex.

Lita [00:12:46] no not Imitrex to get the sleep that I went in for the shots.

Jean [00:12:49] Oh yeah.

Pamela [00:12:49] Yeah there's times that I've I've debated going into the emergency...