My Story

General General TN & GPN (Old Site)
1

I'm so glad to have found this group and I'm grateful to know that I'm not alone and I'm not crazy!

My journey started in 2011 in the fall with severe stabbing pains from inside my upper right of my throat out my right ear. In the words of 'Spinal Tap' the pain was 11. I kept having bouts of this pain for a couple of weeks and finally go in to see my allergist, he didn't know what it was but prescribed a prednisone taper which worked. Once the taper was over the pains had mostly subsided and continued to lesson over the next few weeks. I was fine for nearly a year. Fall of 2012 the pain started but never got to the stabbing point. Did not go to see the doc and the pain stopped in a few weeks. Late fall of 2013 and things were starting up again. After 3 days of eating and drinking nothing, went to urgent care and they once again gave me a prednisone taper. Pain had mostly resolved by the end of the taper apart from a few twinges which later disappeared. Allergist gave me a prednisone taper to keep at home and take when needed. Was also sent to an ENT who took a pic of my throat and couldn't find anything. Said to come back when it started up again.

Late fall, early winter 2014 things start up again, the week of Christmas actually. Have you ever tried to get in to see a specialist at a large teaching medical center during the week of Christmas. Not going to happen. I took the pred. taper. Worked for the first 4 days. Fortunately I didn't have any break through pain during the holiday while visiting my parents. When I got home a day later on the 2 pill day the pain was unbearable. Went back to urgent care. He put me on 40 mg. pred. for 5 days and gave me tramadol, Out of the 20 tramadol I only took 5, I got some pain relief from them but not much and I didn't like the way they made me feel, stupid and dizzy. Was able to get worked into the ENT. He shoved the camera down my nose again and saw nothing. He told me he thought it was GPN and gave me some material to read. He also sent me off for an MRI and an appointment to the neurologist.

Saw the neurologist in January, I was having no symptoms at the time, he said the MRI showed no multiple sclerosis and looked normal apart from the cranial blood vessel on the right side is slightly bigger than the left. He told me I could try the anti-seizure meds and or surgery, He gave me info to read on the med (Tegratol) and the surgeon, Dr. Fukoshima in Raleigh, NC. Read the info on the med and it sounds awful. Also reading the side effects of the med that people here have experienced makes it unappealing but I suppose I should give it a try. I really want to be able to take a couple of days off work to find out how it will affect me, but that is hard to do. I also don't like being dizzy or not alert at work, I coach gymnastics as well as martial arts, I can't be out of it and teach those, especially gymnastics. I'm also preparing for my own 3rd degree black belt test and don't want drugs and surgery to interfere with that. I've missed it for past two years.

I also have chronic hypertension, environmental allergies and moderate asthma. I already take enough drugs, I really don't want to take anything else. According to the info the doc gave me BP drugs and Tegratol don't play so well together.

The neurologist basically left it at those two choices and no follow up appt. Kind of just like have a nice life, let me know if you want drugs. I'm really interested in alternate therapies like biofeedback and the gamma knife. I'd love to know what experience people have had with alternate therapies.

Sorry for being so verbose.

Peace and pain-free days

2

Hello



I can only tell you about my own experience with Tramadol.

I take about 175mg a day, Pills and Drops combined. Tramadol just gave me my life back … I started taking it about a year ago.

Regardin the “High feeling” … That goes away after about 2 weeks and you will feel normal again but hopefully without any pain.



All the best

3

Try the tegretol. I've been taking it, and no side effects that I can tell. (I am also on Cymbalta. In December, I realized I was depressed, too - but I now think that was triggered by pain and too little sleep, maybe a bit of Seasonal Affective, though I've not normally been effected by that. But the depression started to lift before the Cymbalta would have taken effect, Cymbalta is supposed to help with pain, too, though.)

I'm currently taking 200mg three times a day. For the most part, it seems to have reduced the frequency and severity of my attacks. I say for the most part, because yesterday I had some doozies.)

I last saw my neurologist in April, and he was saying Atypical Facial Pain, but that was before I had a clear connection to the throat issue. (I was thinking geniculate at the time, because of the deep ear pain that was my primary symptom. I think the fact that I was only complaining of it hurting when I inhaled muddied the waters. I assumed the rest of the pain was actually TMJ, since that was an older dx and one I had not successfully dealt with. I have no idea how long I've had this, since I've assumed TMJ for so long. Now, I know my TMJ side is the right side, and have actually had some success dealing with that. It's a bunch of puzzle pieces and no clue what the picture is, ya know? :-D)

When he was thinking AFP, he had me on gabapentin. It was in the fall (2014) that the throat got really clear, and (just over the phone through the nurse) he switched me to epitol (generic tegretol.) No mention of surgery, but from what I have read, that is the last line of attack, that they want to try pharmaceutical approaches first.

BTW, gabapentin knocked my socks off - initially. But I adapted, and it stopped doing that. But I had to taper off it. The one night I forgot (I took two at night, one each morning and noon) my dose, I didn't sleep. At all. Once I realized what I had done, it was morning, and time for my dose. I never forgot again! :-D

It is amazing how much your body can adapt, though, given time.

I also wonder if your prednisone helped, or if it was just the normal ebb and flow of this stupid pain. (I call non-functional pain "stupid pain." This seems to me to fall into that category.)

BTW, you are lucky that the MRI shows the blood vessel. Mine was normal. And from what I've read, often there can be a compression that doesn't show on MRI.

4

Hi,

I've had a few GPN flare ups but was able to control it with Tegretol. I tried Acupuncture with much positive results. When I was going twice a week I was able to come off Tegretol. I'm now going for Acupuncture once a week and taking 1 chewable100mg Tegretol without any twinges or shocks of any kind. It's under control and I don't even like talking about it.

All I can say is Acupuncture definitely had a positive effect on my GPN and hope all who try it will have the same results.

Rick

I

5

Meds only made me feel funny but ultimately did nothing for my pain, which made my life miserable. I went the surgery route with Dr. Fukushima and I'd do it again.

Best of luck, hope you find some relief!

6

Hello Vicdoc,

I haven't been on here in awhile. I had the surgery the same time as you. The surgery only worked for a few months. I still have the GPN pain and it is so much worse in the winter and cold. I'm back on gabapentin 600 mg twice a day. The nerve pain has radiated to my left shoulder. I have good days and bad days. I wasn't impressed with Fukishima at all. I had a rough time in the hospital, he discontinued my gabapentin cold turkey and I had withdrawals. It was awful. He gives you morphine for the first night then switches you to tylenol the next day. My head and ear hurt so bad for like 3 weeks. Also he didn't care about my voice, told me go back to work after 6 weeks and still had no voice. He said if I could eat and drink I could work. My PT referred me to a otolaryngologist. My left vocal cord was paralyzed from the surgery. Thankfully there is a procedure to inject collagen in the vocal cord to get my voice back. I have chronic migraines, so I'm seeing a headache specialist and a pain neurologist for GPN and migraines.

Vicdoc, I hope your surgery went well and having no issues now. I just remember that we had the surgery at the same time and often wonder how you are doing.

Aikipen, Dr. Fukishima usually suggest trying Tegretol before having the surgery. I'm so sorry that you have been experiencing this pain. I take Zomig when the pain gets really bad. Its for migraines, however it was like a miracle drug with the GPN. It directly treats the trigeminal nerve and I guess the glossopharngeal nerve as well. I remember the first time I took it, it was like a miracle! so maybe try a triptan drug which are for migraines. I take Zomig and I love it for when the sharp pain is at its max!

7

Tina, I’m sorry the hear of your continued pain. I think you had your surgery a few days before mine. I have had no GPN pain for these 2 years, although I think my 11th nerve might be acting up. It doesn’t hurt at all. I get twitches in my neck, maybe stiffness, but the stabbing pain is gone. Dr. Fukushima wanted to cold Turkey my tegretol, but we insisted he taper it so I didn’t have issues with withdrawal.

8

Thank you all for the replies!

MOF - does the pred. help? I've taken it four times and everytime I've had relief beginning in hours. I have my worst symptoms in the fall/winter when I have allergies so I wonder if congestion and swelling from that is part of the problem. Or maybe I just need to move to Key West ;-)

I am realizing that I am probably going to have to go the med route at least to start. Just want to give some other routes a try.

Question for all those who tried tegretol - how long did you need to take of regular life to find out how the meds would make you feel, loss of alertness or just adjust to them? You know normal things like spotting my beginning gymnastics team on tumbling passes and driving?

This whole process is so crazy. I really thought I was going crazy and it was all in my mind when it all first started.

Peace and pain free days to all.

9

AikiPen, I haven't taken prednisone - I was asking if it did. I'm still on the fence if the epitol (generic Tegretol) is helping me. I had a few good days with just a little low level pain, and then it started kicking back up a bit again. I'm giving it more time to give a fair trial.

Allergies - aren't they a joy? I will say, the year I had a kenalog shot (steroid) for a rash, I had the best allergy season ever. I thought that was worth it!

As for tegretol side effects - I don't seem to have any. I don't know if it was because the gabapentin (that I started with, before realizing it was GPN) had knocked me for a loop, and I had adapted to that, or what. The gabapentin took me several days to a week each time we upped the dose before I adapted.

HTH!

10

Regarding prednisone: My GPN/GN initially started after a sinus surgery 20 years ago and was semi-controlled for many years with Lyrica and other meds. However, bad sinus flare-ups often exacerbated the problem, and I often found a regimen of prednisone helped because it reduced the swelling, which I believe was pressing on the nerve from the sinus/throat side of the nerve.

One thing you might try that gives me some relief. This is an off-label use for Pulmocort (normally used for breathing treatments in asthma). My ENT prescribes it and I use it in a saline sinus rinse. It reduces the swelling in my sinuses and sometimes improves the GPN/GN pain (I have geniculate and glossopharyngeal). Some tips: A. Always boil your water at least three minutes, then let it cool about 30. B. Put half of the boiled water in your Neti Pot or Neil Med syringe. C. Put in one ampule (vial) of Pulmocort. Rinse sinuses. You will snuff out mucous for about 30 minutes. D. Wait another 30 minutes to an hour and rinse with the other half of the saline. You want to follow the Pulmocort rinse with the pure saline rinse to prevent thrush or an itchy side-effect.

Having surgery is a very big deal. I had MVD on 11/7/14, and unfortunately I am not seeing miraculous results. I am having some reduction in pain and in bad days, but not a lot. Please track your pain level each day on a calendar (jot down a number between 1-10 that represents your remembrance of your highest level with the current medications you are prescribed.) You can also jot down changes or significant issues related to that day. For example, if you had acupuncture or if you tried a new medication. This will help you and your care team. Take your pain calendar (or a spreadsheet in my case) to the doctor so you can show what's going on.

I wish you the best. This is a fantastic support group full of informed, factual and reasoned veterans.

BTW: My neurologist has prescribed Misoprostol, which of all things...induces abortion and treats ulcers. I believe he prescribed it to help prevent side-effects of Celebrex, which I am now taking at night to assist with the pain. I had a bad reaction to Aleve, and they are concerned about me taking any NSAIDs, except Celebrex, which is a different class of meds. Just wondering if anyone else has run into this problem. DO NOT TAK MISOPROSTOL if you are young, female and could potentially be pregnant as it is very dangerous. I am way past that stage of life so that's why I can take it.

RE: Tramadol: It's my go-to drug in the daytime. Makes me a bit hyper, but I need that during the day anyway. I tend to wait too long to take it, and it's hard to stop the pain once it starts, so don't be a hero. If it's prescribed, try it.

God bless.