Trigeminal Neuralgia: A Consequence of Lyme Disease

…Or bartonella. Or mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. Unless you’re like me and you happen to get them from other sources like fleas, because you’re immunocompromised and collect infections like some people collect stamps.

I’m not sure which is the true culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but I haven’t had an attack of that in a long time; I think it’s been a year?

My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae, an infection that usually causes “walking pneumonia” but has been known since the 1970s to also wreak havoc elsewhere, like the nervous system. It can cause just about everything that Lyme disease can, and persist even after treatment by mimicking the body’s own cells. My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is also permanent. It was all downhill from there as far as nerve damage goes, but I’m here to talk about the ones in my face.

I began treating with Rifampin and Doxycycline in January 2011, and all hell broke loose: That’s when the autonomic neuropathy made itself apparent, culminating in its diagnosis a few months later. I can’t coordinate how it all fits together, but I know my vagus nerve became damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy is a factor (i.e., damage to the seventh cranial nerve, literally called “the facial nerve”), and my migraines are connected.

When the autonomic mayhem landed me in the hospital, I would try to eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. Now these days, instead of my nervous system having a meltdown, I’ll sometimes get facial pain when I start digesting, again triggering migraine-like pain on the right side of my face until the digestion stops. This can happen even if I haven’t eaten, but the act of eating can apparently be a huge trigger for trigeminal neuralgia; more on that horror story, below. But how did they all end up triggering each other?

  • The trigeminal nerve is implemented in migraines and facial pain.
  • The facial nerve can also be implemented in facial pain (ha, no kidding!), and the tongue numbness I get.
  • Episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously.
  • And the vagus nerve–as it pertains to this post–is responsible for digestion-related reflexes…

But again, how did it come to be that my vagal reflexes got connected to my trigeminal response, in ways they previously were not? All I know for sure is one or more of these infections attacked my cranial nerves, and I’m left with odd, painful remnants as my body has attempted to heal.

 

After my last post, the “tension-headache-thing-that-wasn’t-quite-a-tension-headache”-thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.)

The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible? My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long.

I remember a long time ago writing about another unusual headache, something that acted like “an ice pick headache that keeps on going.” In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of trigeminal neuralgia, too. :\ It certainly sounds like it, from what I wrote.

I hate how deceptive it can be, when it starts to fade away only to attack you suddenly again. It took several days to completely go away and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain–the kind that is often tied to my digestion for some unexplained reason–butalbital is a huge help. It’s a huge help in my neuropathic pain in general, actually, even though I’ve never heard of anyone else using it for that. Half a tablet of Fioricet (or Bucet, which is the same as Fioricet but without the caffeine; most doctors don’t even know it exists) and that kind of nerve pain is usually gone.

Like occipital neuralgia, nothing much helps trigeminal neuralgia, or at least nothing that my system can tolerate. (Things like carbamazepine are completely out of the question for me.) That night, I was already on hydrocodone and ibuprofen, but had to take twice as much as I usually need, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease.

The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.

I feel so much for people who have to go through TN, especially if they have no idea what is causing it. At least I know what is causing mine.

If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate Medical Doctor or LLMD, you probably do–you can read this and call IGeneX to order a testing kit for your doctor. Igenex has an accuracy rate of 95% and tests for all possible reactive bands, unlike standard testing which only checks you for the most common thirteen and produces a staggering rate of false-negatives. Additionally, you may watch Under Our Skin, an excellent documentary film containing people with illnesses like Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, and ALS, who found out Lyme disease was the cause of their symptoms; most recovered. (Not in the US or want more help? Click here.)

a rainbow at night

(Postscript: This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow movements and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise, especially with how slow my hands were functioning. Those of us with Lyme disease know how startling it can be when you’re doing (relatively) “okay” then suddenly your body thinks it has succumbed to Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.)

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17 thoughts on “Trigeminal Neuralgia: A Consequence of Lyme Disease

  1. Wow! I have had Lyme for 20 years…been managing myself quite well with the help of a really good Doctor and a strict diet, gluten, dairy free, grain free except for a rare bit of rice. Now….I have Trigeminal neuralgia, I very well suspected that lyme was the major culprit here. Thank you for sharing. I think I’m going to have to cut ALL rice out of my diet as well. I know my migraines are so much better when I don’t eat any. So……….

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  2. I’ve been “sick” the last two years with something that no doctor can figure out. It started with flu like symptoms and a severe occipital headache. It would come about once a month around my period and last for 4 days. Drs kept telling me it was migraines, so I dealt with the episodes and pain the best I could. Well things got worse and worse and worse. This past November i started to notice muscle spasms and pain in my back that radiated down to my hips, stiff neck, and just general malaise feeling. Oh and let’s not forget the deadly headache!! I called my dr thinking maybe I just had some type of infection and they called me in an antibiotic augmentin. After two weeks I started to feel alittle better so I decided to get up and go get groceries thinking my body was just stiff from being sick and I needed to walk it off. While I was at the store my legs felt heavy as if I was moving in slow motion and I couldn’t do anything about it!!!!! Then I just froze and couldn’t move!!!! So to read that you experienced the same thing is just a relief for me!! (not that I wish this on ANYONE, but I know I’m not alone). I was tested for Lyme disease at MY request and it was negative. But all the drs I’ve seen are just blowing off all these painful bizarre symptoms and a few actually told me I was crazy! Now I’m really suspecting Lyme more than ever!

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    1. Hello, and thanks for taking the time to write this comment. Jessica, your symptoms sound EXACTLY like a presentation of Lyme disease. Especially the parkinsonism-like symptom of slowing down and then suddenly being unable to walk. This is extremely common in neuroborreliosis.

      A negative test doesn’t mean anything, unless it was from IGeneX. Theirs is a full Western Blot that can detect the presence of all twenty-something (I want to say either 23 or 26, I can’t remember right now) bands that react to the bacteria’s presence. The CDC’s version of this only tests for 13 of the most common strains, so if you have less common ones, you’re out of luck! And usually when doctors test for Lyme disease they don’t even use the Western Blot, they use a different test that is ONLY useful if you have JUST gotten the infection, and you clearly have had your illness quite a while, whatever it is.

      You can go to the IGeneX website and request the testing kit, bring it to your doctor to sign/approve, and then go get the blood drawn–the kit even provides you with the tubes and the prepaid Fedex package to send it back immediately! You can also call them to find out if your insurance will cover it–mine did. In the meantime, you can find a Lyme literate specialist by posting on the Seeking a Doctor forums of LymeNet.

      There’s a lot more I’d like to say about not giving up, but I think it can be covered in my recent post, Coping with Chronic Illness: Your Life is Not Over, so please read that and do not think that your life has suddenly stopped just because you have an illness. ♥ Kit

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      1. I had an igenix negative and had a positive from Labcorp. She said she was on antibiotics. If you are on antibiotics when taking either test, it will show negative. I would have them take it when you are off of antibiotics for a least three weeks to a month. Now, you can have the viruses and infections that will come up positive. When this happens, they will usually start treatment right away. You have the have a LLMD. Other docs. know nothing about it and don’t care to know. Especially infectious disease. They do not believe in chronic lyme.

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        1. I don’t know, LLCRCK, I tested positive for several infections while on antibiotics, so I don’t think this is always true. But good point: Many LLMDs actually give their patient a few weeks of antibiotics then have them stop, THEN do the tests, because this order of events prompts a strong immune system that can more easily be picked up by testing. I’d be curious to know which type of IGeneX testing they had for Lyme disease (PCR, antibody, ELISA, etc).

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    2. Hi Jessica –
      Which Lyme test was done? Most doctors do an ELISA blood test, and only if it is positive will they do the second tier (more specific) blood test known as the Western Blot. The ELISA has a very short window of accuracy, however, as in weeks or months. IGENEX Lab has the best Western Blot test. Also, there are 9 Borrelia Burgdorferi (i.e.Lyme) genus specie specific antibodies:18, 23-25, 30, 31, 34, 37, 39, 83-93 kda. It is not the number of bands, but which bands are positive that is relevant. It is worth finding a Lyme Literate MD (LLMD) in your area who understands the testing as well as the clinical evaluation of Lyme and other tick-borne illness. In some cases, the longer the patient is sick, the weaker the blood test results.
      Two websites I recommend are LymeDiseaseAssociation.org where you can download their brochure which lists symptoms, etc. Also ILADS which stands for the International Lyme & Associated Diseases Society – a world-wide group of doctors and researchers working collectively on Lyme & tick-borne diseases.
      Best of luck!
      Marty Kay

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      1. This is interesting. So, can your body make Lyme specific antibodies without exposure? I’m struggling to get a diagnosis now. I’ve had several Lyme tests, Igenex western blot was positive for IgM 31, and IND for 41; Igg positive 41 and 45. So, technically my test was negative. My latest Labcorp WB was positive for IgM 23, and Igg 45. I’m confused as to how I can have so many antibodies, some very Lyme specific, and still be considered negative. Also, should I be ruling out other disorders? Is it even possible as Lyme seems to mimic others so closely? For example, I’ve heard Lyme can create MS-like lesions on the brain. So can you even rule out MS, or is it likely that a neuro-Lyme patient will be diagnosed with MS? Any thoughts would be greatly appreciated!

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  3. From what I can tell borreliosis preferentially infects certain areas and the Trigeminal nerve is one of these. The neuropathic pain that can result is Type 2 Trigeminal Neuralgia- often triggered by chewing but then becoming a chronic burning unrelenting pain lasting hours- in my case if I had a pair of pliers I would have wanted to pull my teeth out one by one. I consumed maximal amounts of paracetamol asprin ibupfrofen codiene and alcohol (cognac was best) to make any difference at all. After being treated with metronidazole by my dentist who was desperate to find something and thought I might have a hidden gum infection- 24 hours later I had a herxheimer reaction and my left neck swelled up. So from what I have learned metronidazole is effective- particularly against the cystic form. A combination of doxycycline for the spirochaete and metronidazole for the cystic form is probably effective. However the bug can do lasting damage and you may have pain for some time after the infection is treated- but all I can say it is slowly improving fingers crossed.

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    1. There are several drugs that can work, including neurontin, carbamazezine, and SSRIs like prozac and sertraline. I’ve heard amitriptyline can work, too. Others only find relief in hydrocodone. I’ve noticed magnesium can keep it from being worse than necessary, and if I miss my ibuprofen dose, it acts up. Maybe these are some options for you!

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  4. I know this post is old, but I am having some pain I believe is TN from Lyme. I hate this disease and all of the effects. I have no more money for doctors, so deal with it on my own and am trying to use natural treatments. Right now, I have a rash (like shingles or poison ivy or hives, depending on the hour/minute/day) and I have gone through this nerve thing before. I thought sure it was an ear infection, but my family doc said no to that and TMJ and sent me to ENT, who gave me tests and a full clean slate and thought I might have MS. Months later, late stage Lyme diagnosis. Treated with doxy 2 months, one month parasite cleanse, one month chinese herbs, now doing salt/C protocol. I took a break for the past week or so, now the jaw pain is back and I feel like deja vu happening all over again. Ugh. Haven’t been to a neurologist yet, but probably should.

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  5. I suspect that I have had Lyme for 10 years during that time I had occipital neuralgia with the pain very intense (ice pick) and like you say unable to lie down…this year I found a tick on me and was treated for Lyme with doxycyline…finally relief from the tingling in my fingers and the stabbing pain in my shoulders and back…I am relieved that the symptoms have subsided but am not sure what lies ahead…thank you for sharing your experience. For those who are out there suffering and not knowing the cause their pain is unbearable,

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    1. Doxycycline may subdue the symptoms of Lyme-related problems for a while, but what it can also do if you’ve had Lyme is make the bugs go into hiding, called the “cyst” or “roundbody” form of the bacteria. This is why some people get treated with Doxy and are fine, while others get sick again after they stop antibiotics (and the two weeks most doctors prescribe isn’t even adequate in the first place for many cases). They will then re-emerge later on when conditions are more favorable, and symptoms will begin, symptoms that can mimick and cause all sorts of seemingly-unrelated disease–such as varying neuralgias, MS, RA, Lupus, CFS, Fibromyalgia, et cetera. This is something to consider should your symptoms return. The doctors that treat Lyme and related infections (the ones that REALLY know how to treat it) are called Lyme Literate Medical Doctors, or LLMDs. I hope your symptoms stay vanquished!

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      1. One year later and so much has happened…I got a notice of some activity here so I thought I would give a brief update…the symptoms returned in March after a chest/sinus cold and they seemed to begin in the face jaw area with ringing different tones…After a second bout of doxycycline the Lyme was back within weeks so I began natural medicine by a Traditional Chinese Medicine practitioner who has been treating Lyme for 12 yrs…2 weeks now and so far so good. Energy levels are up although I tend to over due it and get slammed. (mostly in the lower back and legs)… right now I am hoping that the neuraligias do not return…I find pressure (lying with my legs up an a chair) helps a lot…not sure why.

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  6. I am so sorry you are in so much pain, that is a nightmare. I hope while you continue to treat the Lyme, it eventually leaves you, because I really cannot imagine being in such searing pain the rest of your life. It’s just….horrible! I don’t know what to say except that I wish you didn’t have to go through this, and that I want to hug you. I feel like I am not properly expressing how, just, ugh and sad I am. But. I really mean it. ;__; *cuddles*

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