Topic: Need suggestions for dealing with flare of trigeminal neuralgia
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi everyone,
My adult daughter has Lyme and Co also, and has been unable to start treatment yet.
She is having a bad flare of trigeminal neuralgia caused when a wave at the beach hit her on the side of her face.
She has never found anything that has helped her when she has a flareup.
Anyone have any suggestions?
Thanks!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I also suffer from TN,I take Benidril for it. I herd about it about a year ago and it definitly helps me, I hope it can help your daughter. Worst pain imaginable !
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks for the suggestion, kissis.
I'll tell her that it worked for you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i had to go back and search for this...it's waht helped me last time:
the only way i could handle pain was a skelaxin (like flexeril)every 6 hrs during day then vicoden at night. after about a week the sharpness is gone...and i feel the numbness and other minor sensations...i am off the skel and vicoden and just using ibuprofen. i do have neurontin now if i need it tho
if you search trigeminal a lot of old posts come up
good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks, lpkayak. I will tell her what helped you.
I appreciate it.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Benadryl did it for me, thank God.
There is nothing like that pain. It is intolerable.
The trigeminal neuralgia is caused by the lyme disease. Once she gets good lyme treatment, it will go away.
Less than good treatment will not make it go away.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks, TF. I am glad to hear that Benadryl worked for a couple people.
I will tell her...thanks!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I don't know if mine it TN. Dr's call mine cluster headaches. Most horrible pain ever! NOTHING works entirely. Especially nothing over the counter.
RELPAX will abort the pain once it starts but I still have to endure it for about 20-30 min.
I've had nerve block shots which helped some.
I was put on IV antibiotics once during a flair and it did stop the episode. That was long before Lyme was even mentioned. Drs always said it was just a coincidence the the pain stopped after 5 days of IV antibiotic treatment.
I hope she finds peace soon. It is truly terrible pain.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks Sofi!
I think she takes Relpax already.
It's frustrating when we know why she has this awful pain and we can't really treat it properly yet.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
When my TN flared during treatment....NOTHING was helpful. Not benedryl, not muscle relaxers, not anything at all.
Now that I am not actively treating with antibiotics, when it flares, I have found that the migraine medicine Treximet helps some with the trigeminal nerve flares.
Good luck with that, it is the more excruciating pain in the world to deal with.
posted
I also get this and take 800 mg of ibuprofen for it. But, even that doesn't help enough.
What works for me, and it may sound crazy, is I rub some Vicks Vapor Rub on my face. Burns terribly at first, then the pain is better.
Had to take my son on a playdate once and I had terrible TN to the point of not being able to function.
So, in desperation, I tried the Vicks and in combination with the ibuprofen, it worked!
Other things that have helped some is heat.
On a road trip in the winter, I suddenly had TN come on and by blowing the heater in the car onto my face, I was able to drive home.
This is an awful thing to have - I wish your daughter the best of luck.
Posts: 581 | From CT | Registered: May 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Interesting! I had an attack of this just once. It was when I had gone off antibiotics to try treating for an autoimmune reaction. (I was so sick and willing to try anything to get better).
I took steroids for 3 weeks, then started plaquenil. Out of the blue, I started having all this awful facial pain. It lasted for days, then subsided once I stopped the plaquenil.
I think it was caused by the Lyme and the steroids cranked it up. Needless to say I am back on anbitiotics; and haven't had an attack of this since.
It was so awful. I hope your daughter feels better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
TN is unbearable.
Lyme and co treatment will help, so hang in there.
In the meantime, in addition to the above suggestions...
Butalbital (or other pain killer, I am just allergic to most)... Others seem to like this one, too (per previous posts)
I rub Icy Hot all over that side of my head, too (kind of like the Vicks suggestion).
Lying flat on an ice pack - the squishy kind feels best
I recently started using a combo which seems helpful at the moment, too - Axert (migraine med), plus Valium and 800 mg Ibuprofen.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Painted Turtle,
Thanks for the response and info...appreciate it!!
Opus,
I will tell her about the Vicks, ibuprofen and heat. Thanks for passing along what worked for you!!
sutherngrl,
Thanks for your story and the good wishes for my daughter!!!
cactus,
I will pass along all of the suggestions you made! Thanks for taking the time to respond!!! She has been on alot of migraine meds, but nothing seems to help the TN.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Be careful with the heat. For me, the heat makes it tremendously worse. I have to keep a cold rag on my neck and face. I generally sit and rock and moan till the pain subsides.
The ice-hot trick could be useful. I never tried that. I'd be willing to though.
I have tried swapping my feet back and forth from ice water to hot water just to redirect my sensations away from my head.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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