Greetings,
I would like to know if anyone out there has developed TN after having shingles? If so, please let me know what your experience was in regards to time frame, medication, therapies, physician interaction etc. I am very curious if I am the only one in this community that is under 40 and have developed TN after having shingles which developed into PHN and then to TN.
Thanks so much!
RH
I had shingles on the left side of my face in 2004. It was centered around my left eye and eyebrow. My TN was diagnosed early this month and is on the same side. Three doctors have told me that if I was going to have any problems from shingles it would have happened right away, not seven years later. But I still wonder about that.
One appropriate question: are you and your doctor sure that the Shingles virus (Herpes Zoster) is not still active in your system? If it is still active, then by definition you probably don't have TN -- but rather a continuing case of PHN. Shingles can and does recur in some patients.
Regards, Red
Red, I am not sure if the virus is active or not. How does one go about finding that out? None of the doctors I've talked to about it - primary care, ER doc, and neurologist have mentioned that. They all just said that if what I have was connected to my shingles outbreak in 2004 it would have happened back then; therefore, it isn't connected. I am completely ignorant on PHN. Will have to do some research. Is the treatment the same for that as for TN? Thank you so much!
Carol
Hi Rockhopper… I have had several procedures to reduce TN pain…my last was an MVD in December 2010 at USC in Los Angeles. When I woke up from surgery the TN pain was gone. I had a wonderful six months of no pain…then I broke out in shingles and right about the same time the TN pain arrived again. Since early summer I have been back on tegretol. The shingles were really painfull and I felt miserable for several weeks. I had a rash on my back full of bubbles and I was put on special medication for shingles…now the rash is almost gone but still lingering there…I still can feel some small shingle aches once and a while so I know I still have them. Your joints ache and you get deep siatic like pain as well…I have read it can take a long time to rid yourself of shingles…curious enough I have noticed a distinct reduction in TN spasms as the shingles dissappear. I went four days in a row recently with no TN pain. My wife thinks that the return of my TN is somehow related to the shingles…
Wow, Vic! (Sorry for the late reply)
That is really interesting. Thank you for responding. Since having Shingles then PHN, it has been a sudden introduction to a subject that is fascinating but unfortunately painful.
Best Regards,
RH
Carol: I believe Herpes Zoster is confirmed by a blood test and culture. PHN is often treated by a combination of an anti-viral drug (there's only one but right now I don't recall the name) and Neurontin (Gabapentin).
Regards from Switzerland... I'll be back from vacation around the 18th of September...
Red
Hi RH,
Yes, I had what my Mom calls a 'clinical case' of chicken pox when I was a child, just a couple of spots. I had a case of shingles several years ago after a bad sunburn (in Alaska, in March??).
Then, I developed shingles again directly above my right eyebrow about two weeks after my first attacks of TN, which is the exact same spot as the first case. Same side (right) as my TN. The day before the big red spot arrived on my forehead I had horrible back pain and a weird feeling on my forehead and simply spent the day on the couch. I started medication the day the red spot showed up (My neurologist gave me her cell phone number and told me to call her if they showed up after the TN attacks since I'd had it before). It took about 2 weeks for it to clear up and really drained my energy (further!). Now, the spot where the shingles appeared has a little indent in it and doesn't have much feeling. My neurologist has me keep a bottle of Famciclovir (Famvir) on hand, just in case it decides to flare up again.
I have also developed Beau's ridges/lines on all my toes after bad TN attack as well - have you had that happen?
Wishing you a pain free weekend,
Kate
Hello Kate,
I read your post with much interest. You were very lucky not to get shingles in your right eye. I’m sure you are aware. I was so glad to see while I was reading that you did not! Whew!
Thankfully, I have not developed Beau’s ridges. I do not have lack of feeling on the spot where my shingles appeared on my neck but quite frequently I will have this random, phantom burning feelings. They only last about 20 sec or so at most. Thank you for posting. I greatly appreciate it!
Best Regards,
RH
When I first went in to see the doctor and they said I had TN, I also had rash spots on the left side of my face. The doctor thought I also had a case of shingles so put me on meds it lasted two-three weeks. I haven’t had any other flare ups since, but I have gotten other cases of bad rashes on my body since. Though i’m not sure its related to the TN.
Kristine, from the description you offer, it's possible that you didn't have Trigeminal Neuralgia in the first place, but rather a case of Post Herpetic Neuralgia. Are you still on meds? Have you had further blood work done to check on the status of the Herpes Zoster that caused your Shingles?
Regards, Red
I was first diagnosed with TN, had the MVD in summer 2009. Then in winter 2010 developed shingles - opposite side of TN. This was followed by recurrent mono which zapped my energy completely for several months. Still have flares with itchy, sore feeling on head and swollen lymph nodes. Have had to decrease my work to part time.
I know shingles are connected to chicken pox in some way.I've been looking at how/why I might have got TN.I have had loads of absesses and I have a one or two blows to the head.I also had chicken pox when my children did at the age of about 23.I do not know if i had it as a child.If you get it a second time would that be shingles?? Are the physical symptoms different?? I'd be interested to hear.I have had so much mouth and jaw pain for so long that i can not say when it started.
Shingles is NOT Chicken pox. When you have Chicken Pox and get over it, the virus that causes the disease (Herpes Zoster) goes dormant in the nervous system. It can re-emerge months to years later, sometimes repeatedly, in a rash on various areas of the body, accompanied by nerve pain and inflammation. Sometimes the rash can be internal to the body (rare). This reemergence is called "Shingles" . When nerve pain occurs due to the Herpes Zoster virus becoming active again, the pain is called "Post Herpetic Neuralgia". See the following link at Mayo:
http://www.mayoclinic.com/health/postherpetic-neuralgia/DS00277
Regards, Red
Does not look like shingles is my cause then.This is a puzzle.I will probably never find out how i came to get TN. Just exploring all avenues.
Thanks Red,
Karen
If your Herpes Zoster is still active, you might have Post Herpetic Neuralgia, Karen. The distinction is not always terribly important. Be advised that PHN often responds positively to Neurontin. Worth talking to your neurologist about.
Regards.
I had shingles 2 years ago over my right eye and forehead. The virus receeded as usual but I was left with PHN. Then 4 months ago my pain doctor diagnosed me with TN. My doctor explained that the virus invaded the trigeminal nerve leaving it damaged. Thus Shingles turned into PHN and eventually TN. The good news is that the nerve damage caused in this way could improve. The sooting and stabbing pains had disappeared. But I still have a horrible buurning and itching which never stops compleyely but it does ease up with Tramadol and Lidocaine cream.
Here’s a good write up on shingles pain and nerve damage: https://www.webmd.com/skin-problems-and-treatments/shingles/news/20050725/best-treatments-for-lasting-shingles-pain#1
I go for accupuncture and the acupuncturist said she believes TN is caused by a virus. She suggested that I get the Shingles shot which I did. My family also suffer from cold sores and all had bad cases of herpes, which when I was younger was called trench mouth. I also woke up 3 weeks ago with 2 cold sores on my lip and by that evening my jaw and tongue started hurting. I believe my started after being very sick with what I thought was strep. It was not but my tonsil on right side where TN is grew back!! Crazy.
I just realized I never got back to you. I am so sorry. This is a very interesting article! I am going to my PCP and Pain Doctors in the next 10 days. I am currently on Tramadol and apply lidocaine cream. It helps with a large share of the burning. Nothing seems to help with the numbness and tight feeling. I am considering Horizant or something close to that. My medicare part b doesn’t cover all of it so it would cost about $100.00 a month.
I’m going to ask my doctors if we could treat it as Post Herpetic Neuralgia since it can mimic TN. Thankfully, PHN can heal over time - but it can take a long time.
Have you been helped by what the article recommended?