Mold – trigeminal neuralgia

Mold and trigeminal neuralgia were put in the search engine today.  I have talked vaguely about my having trigeminal neuralgia.  For those not familiar with trigeminal neuralgia, it is a condition that affects the trigeminal nerve, one of the largest nerves in the head.  It is responsible for sending impulses of touch, pain, and pressure from the face, jaw, gums, forehead, and around the eyes.  Trigeminal neuralgia can feel like a sudden severe shock-like or stabbing pain on one side of the face.  These attacks can last several seconds and happen over and over throughout the day.  Some attacks can last months at a time.

I began developing trigeminal neuralgia as the bacterial and fungal infections in my sinuses continued bombarding me one right after the other.  I developed osteomyelitis (bone infection) in the sinus bone.  I had several surgeries to keep scar tissue and the infection cleared from the bone and the sinuses in general.  The pain was so intense.  I was on pain medication from surgery and it seemed to help.  I couldn’t stop the pain medication or I couldn’t function.  I needed a pain pill in order to stop the pain in the morning so I could get up and start my day and head to work.  I needed a pain pill sometimes in the middle of the day so I could focus on my job.  Lastly I needed a pain pill to numb myself enough to be able to try to sleep.  The pain was so intense that I felt like an ice pick was being jabbed into my left eye and twisted.  The pain would radiate down through my left maxillary sinus, my jaw and my left ear.

When my ENT thought I had been on pain medication too long, he decided to try me on Neurontin (Gabapentin).  It took a large dose to calm the nerves down.  I think the maximum dose was 1800 mg. and I was on 1200 mg.  The face and eye pain calmed down but at the expense of the side effects of the Neurontin.  The side effects for me were dizziness.  I was so dizzy that I was afraid to drive and once walked several miles to and from his office to avoid driving and the possibility of an accident.

As time as moved and we have been able to keep my sinuses in better order, the neuralgia is less frequent.  An exposure to a chemical that I might come into contact with will cause the nasal passages to swell, produce large amounts of mucous and trigger the neuralgia and the pain.  I no longer do well on Neurontin or pain medication (probably from taking so much of it).  Now when it flares I just have to apply heat and rest and wait it out.  A sinus infection whether bacterial or fungal will also trigger the return of the symptoms.  We have to keep my antifungal treatment at a level that keeps the fungal infections from re-occuring as often.  I am including a picture of the trigeminal nerve to show how much of the left side of my face is affected when I have a flare-up.

File:Gray778 Trigeminal.png

12 responses to “Mold – trigeminal neuralgia

  1. You must have good doctors over there. As discussed with you before, I have pain throbbing out from my nose, sinus, eye sockets (after breathing in solvents, fragrance, petrochemicals, and other fumes) and sometimes my face and forehead area. I’ve been to many doctors and specialists and the best they’ve come up with is ‘inflammation from inhalation of allergens’ to describe the symptom of pain from an exposure, and ‘allodynia’ to describe the pain that continues with the inhalation of all smells, even natural, for days afterwards. I’ve even put cotton wool up there to stop myself breathing through my nose.

    It’s great that you have so much information about this!

    • I have been fortunate that I have an amazing ENT (ear, nose, throat) doctor who diagnosed the trigeminal neuralgia. It sounds like you may be suffering from it as well. Check with your doctor and ask questions next time you visit him.

  2. I posted this on another blog that I have and someone asked if there was a test for trigeminal neuralgia. This was my response:

    My doctor didn’t do any specific test. He relied on the location of the pain and for me by touch. Those areas during a flare up for me become numb to the touch. I think another doctor tried to do a stimulator type test but the pain was too intense and we had to stop. After receiving your question, I did a quick google search and this is what I found.

    No single test can determine trigeminal neuralgia, so your doctor will make note of your symptoms and medical history. He will touch your face in areas of the trigeminal nerve and other places on your face to determine if pain is localized to the nerve path. The doctor may also ask if certain triggers make it worse or cause an onset. Some of the triggers include drinking, eating, brushing teeth and even putting on makeup or shaving.

  3. Very informative post, that pain sounds awful. With my chronic pain, I have definitely had long stints of time where I was on pain medication all the time. I go through phases of doing well/not doing well on pain meds, not sure what helps and what hurts. For now I’m just rolling with the punches.

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  5. Hello Kathryn,

    I’m wondering how are you these days? Any improvement?
    How do you keep your sinuses in order?

    I have Trigeminal neuralgia, type 1, the classic form. I also have earproblems en vertigo. Verry interested in the mold-trigeminal neuralgia combination.

    • Hello Diana

      My trigeminal neuralgia is not as severe as it was. I always know it is there but if I can keep my exposures limited and my sinuses clear of bacterial and fungal infection, it is tolerable. I irrigate with a Grossan Irrigating Tip, I take antifungals daily to keep the fungus in check and wear a charcoal mask when near chemicals or in windy conditions outdoors.

      The mold caused so many fungal infections and the overgrowth of fungus caused bacterial infections as well. Between these infections, bone infections in the sinus and sinus surgeries, nerve damage was inevitable.

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  7. Hello Kathryn,

    Thank you for sharing this information!
    Which “antifungals” do you use?


    • Ellis – Currently I am using compounded Miconazole. I take between 200-400 mg. per day. When things are well and my sinuses are good, I can get by with 200 mg. per day. If I have a flare up then I up the dose to 400 mg. per day.

  8. Pingback: I have trigeminal neuralgia why is eye pain bad? | allergictolifemybattle

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