I don't know where to begin. I am a 58 year old female. I have had 2 things a year ago in February 2013. I had a root canal on my right upper rear molar, and Photo refractive keratectomy (PRK) surgery on my right eye. The PRK was the most painful experience of my life. I wanted to pull my eye out, and screamed in the bathroom from pain.
In March of 2014, I began having dizzy spells, and my ear felt as though I had water in it. I worked very physically long hours in the heat outside through April and May 2014. The day before I woke to severe ear pain, I was assisting a necropsy and had several dizzy spells.
The next day I woke to extreme ear pain. I was diagnosed with Bell's Palsy, but later Ramsay Hunt Syndrome. The MRI showed I had a lipoma tumor in the center of my head, and a pocket of fluid at the base of my head, top of neck area which was the beginning of Spina bifida, but mine closed so I was okay. Both of these findings are congenital and have not caused me any problems and will not cause me any problems.
I see my neurologist tomorrow, pain is worse than ever and is most severe on the left side jaw, and goes up to my cheek, beside my nose area. I feel like the left side of my face is possessed, a fog, my eye always feels tired, heavy and nerve pain behind it. I had very little facial palsy and rash from RHS.
My ear still sounds as though I have water in it, and sometimes rings and has pain. My voice has been hoarse all this time, I cannot talk, it hurts too when I talk, or listen on cell phone.
I am just beginning to learn about TN, I was focused on Ramsay Hunt. When I went to ER yesterday I was told TN. Please help guide me to questions for my neurologist visit tomorrow. I do not know where to begin and what meds are best. Thank you very much for any assistance.
"Stuart", there seem to be multiple things going on in your medical picture. Not all of those things are commonly associated with Trigeminal Neuralgia or Neuropathy. But the presence of a central Lipoma would offer ample opportunity for neuropathic damage.
Concerning questions for the Neurologist: the central issue seems to me to be one of discriminating between the multiple possible contributors to your facial and head pain, and choosing an appropriate medication therapy protocol. You also need feedback on whether some surgical procedure is likely to prove necessary at some future time, for the Lipoma.
So my suggested questions would be:
a. "How much of my jaw, cheek, and nose pain is attributable to RHS, versus Bell's Palsy, versus TN? Or can that attribution be made with confidence?
b. What are the treatments of choice for these three conditions and do they overlap or mutually contradict?
c. Is it possible that I have a vascular compression of a gangleon on the auditory nerve? Would the ringing in my ear and the sense of fluid in the ear be consistent with such a compression?
d. Given my hoarseness and the triggering of pain in my throat, do I have any indications for gloss o-pharyngeal neuralgia?
c. Would it be medically appropriate to try me on a short course of Tegretol, Trileptal, or Gabapentin (Neurontin) as a diagnostic aid for confirming TN?
d. What steps are needed to confirm or eliminate Ramsay Hunt Syndrome as a diagnosis? Ditto Bells Palsy.
Please do get back to me with a report of your discussions with the neurologist.
Go in Peace and Power
Thank you so much Red. I will copy these questions for tomorrow and let you know anything when I find out. Thank you.
I am a bit slow and I apologize. I wrote this yesterday becoming a member and added to it now;
I have had MRI, hearing test, cat-scan.I did not want to take pain meds, so I found that going into pool helped, about 5x daily. This no longer is as helpful because I have more severe pain, pool helpful when pain is not extreme. The pain has been constant but is much more intense, I woke today at 2 am and had difficulty swallowing, intense pain. This episode began after chewing food nearly 40 hours ago. I am now on 5 medications; prednisone, viral, clindamycin(infection now),Gabapentin, oxycodone. I feel almost normal, but I can feel when meds are weakening.
Last week I went to dentist fearing another root canal, said all ok with my teeth, perhaps nerve? I haven't taken any oxy since the first pill, did I already say that? I am sorry if I repeat myself. I wanted to see if the Gabapentin worked without oxy. It does not relieve pain like oxy, but life is better today, and I will certainly keep you updated, you have given me so much comfort. Thank you Red.
No apologies needed. We do what we can and as we can, Hon.
For your neurology appointment: Gabapentin is known to be somewhat less effective in Type 1 (classic) TN than Trileptal or Tegretol. Of the three, Trileptal is the best tolerated for most people. The other two meds are worth discussing with your neurologist.
It's not fully clear to me why you are on Prednisone, unless it is targeted on some other disorder. And what nature of infection are you dealing with?
Oh, thank you Red for your gentleness. I have had a bad left side sore throat and gum area. I had a sore throat last week with the intense pain on left side teeth pain/jaw when I saw the dentist. They cleaned my teeth as well( I go to the dentist 2x year), and I wonder if it caused inflammation or infection with gums. When I went to ER at 3 am on July 15, gums were swollen and red, my throat was red with small white bumps, the left side of my tongue was raw, I went to ER because I could not swallow very well and it frightened me. My gums, teeth, hurt/numb before dentist. My back molars are often numb, and then very painful for past 10 weeks, I fear chewing food. I guess they restarted the meds for RHS. I hope this helps. I do feel more alert and less fatigued than in past 10 weeks, and my voice is still hoarse. I very rarely socialize outside of home; pretty much with my sisters, I have missed every gathering with my sisters since this onset. My right side of face feels normal. Grazie, from my heart.
The mouth symptoms you describe sound to me like a combination of strep throat and perhaps something in the spectrum of neurological pain. You might want to talk with your neurologist about how he/she differentiates between Ramsay Hunt Syndrome (which is closely related to Shingles) and post-herpetic neuralgia, which can present with closely similar symptoms. I would expect treatment for the two issues to be similar as well: a round of anti-viral medication with a longer prescription of Neurontin.
I'll expect to hear from you by next week.
I heard a song on the way to the neurologist yesterday morning, I couldn't believe it. I downloaded it and put it here too.
I got bad news, I have TN1 and TN2 and my hoarseness has nothing to do with TN so I have an apt with ENT on Weds. to have scope. The neurologist said it could be from RHS. I did have step as well. So, I am being treated for all.
I cried in the docs office, being confirmed was sad as it is with everyone.
When I woke this morning I remembered that song, I wake around 4 am, I said to myself if I am going to be this way I will do something I love to do. I jogged 5 miles with my dog Zora. The first time in 11 weeks. It was a good run, I took my meds later because they make me dizzy.
The doc told me if medication, etc not working to send me to John Hopkins. The pain/numbness/ throb is constant, but with meds r working some I feel better, ( I am eating no hard foods!) . She also wants to have another MRI( talking with insurance), I have so much difficulty remembering so much info but the MRI is to look at something that begins with L?
I do feel groggy now so will go. You are dear and give me much comfort knowing that you are here. My name is Kate. xo
Kate, sometimes the good news is the same as the bad news: we know a little more than we did before, even though we hurt.
Getting rid of the Strep will be helpful for settling down the rest of your neurological system. A lot of people deal with a combination of TN1 and TN2, and sometimes one med will become less effective and need to be replaced by another.
If you have either RHS or Post Herpetic Neuralgia, then you should have active Herpes Zoster virus in your bloodstream. Let me know when your lab tests come back. A second MRI may or may not be useful, depending on what variety of MRI is conducted and whether it is both with and without contrast agent. But at least your doc is treating aggressively, and looking for evidence of anything that needs to be dealt with apart from TN.
Scratch zora's ears for me. My wife and I live with three rambunctious cats and a small boxer whose tail has never been cropped. All are rescues and the cats have trained Molly to give up her doggy bed when they want it. When they get us out of bed before 6 AM, I think they're training us.
Go in Peace and Power
I love hearing of your animals Red. My dogs are rescues too. One is a Carolina dog, that is Zora.
I don't know if they ever tested my blood for Herpes Zoster.
I haven't had an excruciating pain episode since meds, but the constant numb, nerve in teeth and eye remain, fog remains. I tried marijuana when I was a teenager and did not like it at all. On the way to the neurologist I finally figured that is how I feel, with and without meds. I think as I read others experiences it is common?
I volunteer for Marine stranding, but haven't been able to. I thought I might return tomorrow, and then confusion sets in again, I was driving home from the market yesterday and didn't know where I was. Is that common too? Does TN cause confusion and the dugs too…?
I am a bit lost it seems. I think of Yogi Berra and what he said, it makes me smile.
If you come to a fork in the road, take it.
Thank you Red.
P.S. I have continued to run, early, first thing. It gives me joy, my Zora and me, nature to see. I am best in morning, as the day continues symptoms grow worse.
Peace and joy to you Red,
I understand what you are going through. I'm sorry I did not view your post before the doctor's visit but I hope they give you some meds that will help. I am new to this disease and suffer from both TN! and TN2 so I have pain all the time. I also have the ear pain, eye pain throat pain (like I'm being choked all the time) and several of the symptoms you described. They have given me meds that reduce the pain but it is still there. Thank God I do not have the sever stabbing pain but 2-3 times a week now but the gripping, squeezing pain does not leave. I am often confused and disoriented and had this before any of the meds so I am guessing it is part of having TN. I'm so sorry you are suffering through this and hope you find relief..