I have trigeminal neuralgia and it always flares if/when I eat chips or something like that. May be stating the obvious!
It also flares with weather stuff, migraine stuff, but it always there. I did lots of acupuncture which helped bring the constant daily pain level to about a level 2-4.
For awhile, when treating with abx, it was like a drill being bored into my jaw, a vice grip, completely unbearable. I think if I were to go back on abx, certainly this symptom would start flaring like crazy again.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
" it was like a drill being bored into my jaw, a vice grip, completely unbearable."
yes. skelaxin and vicoden were helping but just had allergic reaction to vicoden so i am in trouble
i'm wondering aobut tetnus thos-cuz i had a puncture wound when it all started and have not had vaccine in awhile
scared to take it-scared not to
i see a doc monday...i've been in er and on many meds so far so have spent an awful lot withut help.
catscan and allergy testing pending.
but LONG wait for neuro whi i guess is only one to give me neurontin or valium that might help. i hate valium and vicoden...but this pain will make you do anything
i have been on abx (first rifampin for bart) and when pain started doc was txing me with 3 other abx for ear infection...so i guess it is ppossible herx too..i haven't been off abx to see...my lyme has been creeping back andihate to stop them if i have them
thanks for your input
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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My trigeminal neuralgia has changed over time. It was excruciating for years. There was a time for a long time, my jaw was constantly clenched all through sleep and I must not have been really sleeping because I was aware of this rigor thing, but I could not do anything about it.
One thing too, that you may want to try since migraines are related to the trigeminal nerve (the research is showing) is Treximet. Treximet may be helpful, I don't remember if I have taken it during a trigeminal flare but the flare does lead to migraine and vice versa and Treximet has been the only thing helpful.
The other thing that was surprisingly helpful was far infrared light on the jaw during acupuncture. However, this was after two years of antibiotic treatment.
Maybe you can call the neuro and request Treximet, if you already have an established relationship, but Treximet is rescue medicine, not preventative.
posted
Are you on cortef? It may help reduce the inflammation, which can cause it to flare.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
one thing that helped me was an NTI dental splint. it's the kind that just goes over the two front teeth and prevents molars from touching.
No cure, and i don't think it helped with migraines, but it is a huge help in preventing TMJ pain caused from or exacerbated by clenching.
(I am not affiliated in any way, directly or indirectly, with NTI or any other dental device or service)
Posts: 1173 | From USA | Registered: Nov 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
just saw your other thread about TMJ and remembered this:
when i take Imitrex (sumatriptan) for a migraine it also relieves all my neuropathies, including TMJ. Too bad it's not a drug you can take every day
but it may be worth trying when you get a really bad attack
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you. things have calmed down some and i see doc and dentist tomorrow. i think i'll ask about migrain drugs since i don't have vicoden for emergencies any more. i see llmd this week too-it's all so complicated.
i guess i just have to go day by day...i'm overdue for skelaxin now and still ok-except i stopped my normal ibu so i am getting stiff everywhere i have arthrits...but i'm taking so much new stuff...once i ended up in hosp for a week from prescription meds-hope to avoid that
i'm sleeping wierd and have a fever on and off too...so hope someone gets to the bottom of this
i'm not at all sure its lyme related
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ps-yes i am on cortef
lymetoo...how can anyone have 38884 posts?!?!
how did you ever do that????
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
lpkayak, I wasnt sure whether you got this on private message cause my brain just isnt working quite right lately.
Hi. I did get some help and am much better. My pain is almost completely gone as long as I am taking the medications. I was diagnosed with Trigeminal Neuralgia and received medications-Tegretol and Baclofen. I ordered a book called Striking Back from the Trigeminal Neuralgia Association and it states in it that 1 out of 4 people with Lyme disease, gets the Trigeminal Neuralgia.
Find a neurologist or ask your primary. The primary was right, it is in the 5th cranial nerve. Call your doc, one doc said Trileptal and Baclofen because you don't have as many side-effects, but the Tegretol and Baclofen are working for me so they ar just keeping me on it. Side effects are some drunk feeling but it takes about 2 weeks to get over it, yes there are some cognitive issues also but you already have Lyme disease, you know how it feels.
Try not to touch your face in any area, eat cold or hot stuff, especially cold, you probably don't talk or smile a lot now but try not to. If you are in a cold climate, don't breathe through your mouth. I drink warmed up water. If you would like to talk over the phone, email me back with your information. lemonhead
Posts: 156 | From Corpus Christi, Texas USA | Registered: Sep 2004
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