Tongue affected by PHN/Trigeminal nerve during shingles

[janq]

Has anyone on this forum been suffering from Post Herpetic Neuralgia...tongue burning sensation...as a result of trigeminal nerve involvement during a bout of shingles.  I've had this since February (shingles in January).  Nothing helps relieve it and tried to enroll in a clinical trial, but couldn't because of Chronic Kidney Disease and arthritis pain.
Any suggestions for relief would be greatly appreciated.  Presently am taking 600 mg of Gabapentin.

Thanks in advance.

[janq]

Thanks for your comments.  I will ask my PCP about this information.  I always have to clear new meds with her, since I have chronic kidney disease and don't want to mess up my gfr any more than it already is.

[Fluffysmom]

I took gabapentin for years, for both restless leg syndrome and some relief from nerve pain.  A year or so ago, my Sports and Spine medicine doc suggested I switch to Lyrica, as it is more powerful, you take lower doses, and clears out of your system better than gabapenting does.

I was taking 800 or 900 mg. of gabapentin a day, sometimes more.  I did get used to it after a while, so that it didn't make me drowsy, by the way.  I switched to 50 mg. of Lyrica 3 times a day, then raised it to 4 times a day when I started having bad nerve pain in my arm.

My doctors have finally figured out that I have Trigeminal Neuralgia; it acted up while I was on vacation on Maui, boo hoo!  I took an extra Lyrica, and it helped a great deal.  

It had been flaring up for weeks.  I saw my dentist when I got home, and she found no dental reason for my pain, and suggested trigeminal neuralgia.  I saw my PCP yesterday, and after hearing my stories of pain (this has happened on and off for years), she said that she thinks I have trigeminal neuralgia, and that taking extra Lyrica when it flares up is fine.

Oh, the extra Lyrica didn't make me sleepy, by the way.

My TN could be either from the Herpes lesion that I've been getting on the left side of my face for years, or from a lesion on my pons (brainstem).  My neurologist said it doesn't matter which; the treatment is the same.  A drug such as Lyrica.

I've heard that some people get a good response by adding Tegretol to treat nerve pain; you might ask your doctor about that.  I've been told that you end up with fewer side effects, and more pain relief.

Good Luck!

[messymarvin]

Hi, I took 300mg of the GAB. I will NEVER take it again!  I'm not sure what kind of allergy tests I need run or what specific the dentist was refering to. I do know now that alot of my hormones are out of wack. So I am back to the herbals and nutrional supplements.I used to be on about 30 pills a day about 5 years ago and got off all but the synthroid.  I will get off that to as soon as I find the natural replacement as I have already had it eblated.  I am going to try bio Identical hormones. I feel that the fibro symptoms are all realted to a hormone imbalance and prescription drugs just make us worse.  I was prescribed Lyrica last month by the Pain doc at the VA and two weeks later got a letter from the VA saying that I couldn't get it because they don't "CARRY" it!!! Imagine that!!   Have a good weekend.

[janq]

I'm thinking about installing a "bubble", but can't figure out how to move about with my life. lol
Don't know what the reasoning for the timing, except that the directions were 300mg before bedtime...then when it was increased to 600mg, the nurse didn't say anything about changing.  Didn't even think to ask when I saw the doctor and it's just continued.  I will definitely ask in three weeks when I visit the doc again.
I haven't tried lyrica...though have seen it advertised for fibromyalgia...one of the few things I've not been diagnosed to have.  Don't need anything to make me fatter, thank you.  Watching my diet because of kidney disease is enough of a problem, do not want to add weight and then have to eat even less.
Take care.

[SIMMY20]

l ol, you need to live in a bubble with all them allergies,lol, just wondering when i was on the gabapentin, i took it morning noon tea time and evening time , how come you only have it at bed time ? i know it supposed to help you sleep the night but what about during the day?have you tried pregabalin{lycra} makes you fatter lol.but it does take a lot of pain away ,, well some anyway!!                                                                               to messymarvin.....lol good on you!!! thats the fighting spirit you go girl!!!  

[janq]

Thank you for your comments.  Sorry to hear that you've had so much pain.  May I ask how many mg of Gabapentin you took.  I am taking 600 mg every evening.  I was told to take it at night so that I wouldn't have to worry about the drowsiness.  When I was in a lot of pain it helped me sleep.  Now as I mentioned earlier the effects wear off in about 12 hours--6 or 7 of which I'm sleeping.  I would really like to have something besides Tylenol to take in the daytime, to relieve the pain.  
I wonder what kind of allergy your VA doc was thinking about.  Have you followed up with your PC.  I had allergy blood test taken about three years ago and am allergic to dogs, cats, grasses, trees, dust, and a bunch of other things...so wonder what specfic allergy the doc was thinking about.  
Good luck!

[messymarvin]

Hi, 47 yr old Female. I have Fibro also and about 2 1/2 years had shingles, then a migraine 2 months later that after 2 shots of Imitrex I believe caused a stroke behind my left eye. Two months later had a bad tooth and root canal leaving me with the dx of TN. Ever since my tongue has had issues. Ithought it was cuzit seemed to live where the hole from the removal of two back teeth was. Well, more recently it has started to seemed swollen and I too bite it occasionally.  Last week I had such terrible pain, I took one of my Gabepentin and It knocked my socks off!!  The pain ws not even touched!  I was so drugged for three days I could'nt function at all or drive.  (This is why I NEVER take meds, I can't stand the feeling and I seem to be so sensitive to them anymore.) I have a mouth guard that I cannot eat, drink or sleep with. It does give my tongue a rest though.  Yesterday while at the dentist (VA medical Fac.) I mentioned this to her and she is recommending to my PC doc to run a battery of allergy test as this might be the real cause.  Just a suggestion to others here, in case this hasn't been done yet. Good Luck to ya and I'm open to other suggestions also.  I'm sooooooooooo sick of pain for the last 15 years, my life ***** and it has cost me a marraige and two relationships but I am not letting it CONTRL my  life anymore.    Good luck!

[janq]

Thank you for your reply.  I see me doctor in a couple of weeks and am going to ask about pregabalin or an increase in the gabapentin.  Usually, the gabapentin wears off in 12 to 15 hours and the rest of the time my tongue feels like it's on fire, not to mention that I sometimes bite it...guess that's when it's swollen.  I've had this a year now and it has gotten "very old".  I know others are dealing with much more difficult problems, and I should be "tougher", but it is so very frustrating.  
Wishing you many blessings.
Janq

[SIMMY20]

hi janq hope you are well  my brother had shingles about tree years ago and has been suffering with the same symptons ever since! post hep pain, some times his tongue swells up so bad he feels like it is going to pop! the gabapentin you are on works , i have tried it as i have the same experiences with tn, and fibromyalgia, i was just wondering have you tried pregabalin{lyrica} this is what i am on and my brother it seems to work better on me than gabapentin, my brother is on 25mg x3 daily and i am on 200mg x4 daily plus other meds , go back to your doc , there is other meds beside these to try and with trials you might find a happy medium, tc, and good luck

[janq]

Wish I could say that I received an answer and it has resolved my problem.  Unfortunately, no one I speak with has been able to offer any help. I'm still taking 600 mg of Gabapentin every evening before bed, which does allow me to sleep.  But the medication wears off in 10 to 12 hours, and the pain, burning, tingling returns.  It's especially annoying when I eating or speaking.  I'm a lector at my church and sometimes find that certain words are affected...I've become very self-critical about this, yet people say they can't hear any problem.  I'm hoping they are not just telling me what they "think I want to hear."

Perhaps you could find a clinical trial near you.

I keep hoping that it will just go away, but so far nothing.  
Good luck to you.  If you learn anything, please let me know.  I'll do the same.

Janq

[shpstw]

Hi,
New here..did you ever get an answer to your tongue problem after shingles. my tonque is driving me crazy..dry, burning,tingling, very conscious of it in my mouth. i know the tn pain is horrible but this tongue is caising me so much stress, Any input would be helpful. Thanks