Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 12-12-2009, 07:00 PM #11
Mrs_Bennet Mrs_Bennet is offline
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hi painintheneck,

I hope you are indeed in remission. While i have had this condition for a relatively short while, i do remember the anxiety assocoiated with the symptoms going away. i amost felt suspicious initially - that i was being lulled into a false sense of security

Once in remission it was hard to believe the condition was really there! my last period of remission was for 5 months and when it started gradually returning, i actally thought it was a throat infection. I'll be more aware now of the patterns.

My previous remission after a relatively short and undiagnosed period of GN was for a year. So certainly long periods of remission seem to be part of the beast - I think i might have read that it might go away for good sometimes, not sure. nothing about it makes sense to me so hopefully it could disappear!

I'm not sure if i have experienced the metallic taste - i remember being convinced, before diagnosis, that it was a horrible infection because of a 'poisonous' (v hard to describe!) taste or sensation in the back of my throat. of course there was no infection there to account for it. The best way i can describe it now that the meds are muffling the worst of the pain is a burning sensaton.

I would also love to hear about any long term remissions.

all the best - I hope you can relax and enjoy the break - which will hopefully be a very long one or for good!

mrs_bennet
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Old 12-14-2009, 10:50 AM #12
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Hi, Mrs. Bennet. Sorry I'm so slow getting back to this thread. Busy witht he holidays and all.

I hope your meds have gotten worked out. Today is my second day off meds since August. So far... okay. We'll see. I know what you mean about doctors thinking you're being a drama queen- it's impossible to convince doctors that you're in pain at age 14! I was once sent home from an after-hours clinic with some Motrin and some suckers. Seriously.

I think it's interesting that you have a problem lying on your right hand side. For me, that's the better way to go. IIRC, we both have pain on the left. Quirky.

Maybe you can find some fun non-alcoholic beverages for over Christmas. I have a non-alcoholic wassail recipe if you're interested.

Hey, painintheneck! I'm glad you've found us! My situation was a lot like yours, at first. I've had it 10 years, and wasn't diagnosed for the first five. They also took my tonsils out, hoping to fix the problem. (Though I certainly needed them out, anyway. The ENT said they were rotting. Ew.) I don't think getting them taken out made my pain worse, though.

I have never heard of GN going away for good, though my neurologist did express a hope that I might grow out of it. Until a few months ago, it seemed like I might. I'm almost completely in remission, now, and hope to stay that way for a loooong time. We'll see what happens.

I don't have any strange taste where my pain is, but my pain is more the back of the throat, so I don't associate it with tasting anyway. I have noticed that the whole area of my throat flushes when I have a pain attack. Very odd.

Are you considering MVD? It sounds like yours is definitely from a compression! I've never had an MRI for my GN, only for headaches, and that was several years ago, now. Typically, those documents are kept only 7 years, so I'm sure it's long gone.
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Old 01-12-2010, 08:53 AM #13
arachneblue arachneblue is offline
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Hi semcsquared,

I made it! I posted a bit about my journey to GN in the forum for newbies. I'm at work now, so I've got to get to work. More later.

arachne
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Old 01-12-2010, 10:52 PM #14
semcsquared semcsquared is offline
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Hi, arachne! I'm glad you made it! We move pretty slowly around here, but not as slowly as that yahoo group. Discussion is more lively on the Trigeminal Neuralgia board if you want more folks to talk to. They have many of the same experiences as we do- especially with medications.

I read your introductory post, so I will share my stats, too. I'm a 24 year old woman, also married, but no kids. I'm currently unemployed, but I'm educated as a medical physicist and am looking for a job. I also like to knit, but I confess I'm not very good at it and have never made up my own pattern. (I go by this name on Ravelry, too. If you're on there, you should look up the neuralgia group.) More than knitting, I enjoy baking! (And, of course, chocolate. )

This month marks my 10 year anniversary for having GN, though I went undiagnosed for the first five years. No one, it seems, expects neuralgia in a teenager. I was in remission all through December, but three days ago it came back with a vengeance, so now I'm back on the meds. I'm just so glad to have them at all, and it's reasonably well under control for the moment.

I hope that you're having a good day. Welcome to the boards!
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Old 01-13-2010, 05:16 AM #15
Mrs_Bennet Mrs_Bennet is offline
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so sorry to hear you have the pain back Semcsquared, let's hope it will only be a short time before you have another break. do your meds take the pain away completely? I am on 1800mg neurontin a day and have had dull pain all the time i have been on them - better that the stabbing pain though. Seems to be getting a bit worse lately.

I have two questions for anyone who has had any experience with neurontin... firstly is it worth trying higher doses? I have read that 1800mg is probably the optimum amount and that not much improvement is likely by taking more, but it always better to hear from the experts!

Secondly, does anyone know if alcolhol can reduce the effectiveness of the medication? I have read that you need to be a bit careful 'operating machinery' but i havent read whether it has other impacts on the efficacy of the drug. I am just trying to work out if i can do anything to get more out of what i am taking in terms of pain relief.

Otherwise happy new year to you all - hope it going to be a good one!
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Old 01-13-2010, 06:21 AM #16
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welcome arachne - glad to have someone else to add to our collective knowledge (not glad that you have been affected on and off for 12 years though!). The first dr i saw about the condition, when i was feeling quite frightened about the pain, acted like i was over dramatising a sore throat. I couldnt get him to understand.

I saw a different dr at the same community clinic who luckily had come across the condition before and nailed it! so it was a relatively short time until i had a proper diagnosis. I tried tegretol but couldnt cope with the dizziness thatt happended from time to time. Neurontin is great in that it has very few side effects but only dulls the pain.

I am a 48 year old woman (more the typical age for it to hit than you semcsquared!) and work as a policy officer for the goverment. I am not very domesticly inclined so my new years resolution is to bake something! I do a lot of reading and like socialising with friends so it is very frustrating when my ability to speak is affected!! looking forward to continued information sharing with you all!
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Old 01-18-2010, 06:34 PM #17
chara0627 chara0627 is offline
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Default I have GN too!

I was happy to read about at least a few others that have GN...there just isn't that much information out there about it.

I had my first episode with my second preganancy (about 6 years ago), which lasted about 6 weeks. It was more annonying and strange than anything. I completely forgot about it until my third pregnancy (about 2 1/2 years ago) when it came back, worse this time. It went away and then came back again toward the end of that pregnancy. The pain was so bad my eyes would tear up, my nose would run, and sometimes I would throw up. I can only relate the pain to being tasered. The pain relented within about one or two weeks of giving birth. My doctor hoped it was related only to my pregnancies and I hoped that it was...but it wasn't.

In the last 18 months or so since giving birth, I have had multiple episodes. One lasted 7 months. I have tried tegretol, lyrica, gabapenton, and several others. I talk myself through each episode, hoping this will be the last. I tell myself it is going to go away...but it doesn't. After my last episode, I decided to consult with a nuerosurgeon. At that visit, I was on the tail end of the episode. I got the information on the surgery. I asked if stress played a factor and the doctor assured me it didn't. In the end, I told the doctor I was in the process of losing weight. He said even 5 pounds can change body composition and since GN is linked to increased blood levels, etc it might help. I decided to go off my meds and have lost 25 pounds to test this theory. Well, about 2 weeks ago another episode started. I have my 3 month follow with the neurosurgeon this week and I am going to do the surgery. Some of the meds will work for a while but then I get break through pain, so we have to either increase the dose, or add another. Other meds make me non-functional or sick.

I am 34 and have decided I am not going to live the rest of my life like this. I have 3 young kids. In 10 years I don't want to look back and remember being miserable. I have a high pain tolerance but this is too much for me.

Interesting, I read that others get that metallic taste with an episode. I get it in the very beginning of the episode...it is one of the first things that tells me it is coming back. Drinking is one of the first triggers, followed by talking and eating. With the high level of pain, combined by the talking trigger as well as the vomiting episodes, I decided enough is enough.

Anyone out there had surgery?
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Old 01-27-2010, 04:23 AM #18
Mrs_Bennet Mrs_Bennet is offline
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Hi - i havent had surgery but i'm also interested in hearing from anyone who has. I have an appointment with my neurologist in Feb and will ask about options and risks. I have just increased my dose of neurontin and seemm to be getting some better results - but who knows it's such a changing thing!
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Old 03-10-2010, 08:36 PM #19
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Default Not sure

I never heard of Glossopharyngeal Neuralgia until yesterday. A few days ago I had dull pain in the back left portion of my tongue. Then suddenly yesterday morning I felt a stabbing pain when I swallowed, right where the hard palate and soft palate meet (also on the left side). The pain shoots to my left ear. When pressure is put on the area it automatically causes a shooting pain (so I try to not touch the area). The same thing happens when a q-tip is pressed lightly to the back of my throat. If I grin or yawn it also happens. I tried Tylenol with absolutely no relief.
The shooting pain made me feel like I was going to pass out so I went to the on-call doctor at my clinic. He checked me out, didn't find any signs of viral or bacterial infection. He said it seems like GN. I am only 27.
Looking back I have had excruciating shooting pains in my left ear on and off (about 4-6 times a year, lasting 1-2 weeks) for the last 3 years. It was always localized to my ear and throat. It never involved this mouth and tongue pain. I had gone to my doctor, an allergist, and an ENT, but they always just prescribed antibiotics and sent me on my way. I did read on some sites that GN is progressive. Could my previous ear/throat pain be related to my current pain? Does this all seem similar to anyone else's experience? Does this sound nothing like how GN happens?

Thanks!
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Old 03-12-2010, 07:07 AM #20
Mrs_Bennet Mrs_Bennet is offline
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Hi Nemily,

I had a couple of short term experiences maybe a year apart before GN became more prominant in my life. I assumed that it was linked to throat infections and I was only diagnosed with GN about 2 years ago. I dont seem to get pain from pressure on a certain point though i have heard that this happens with some people. Mine is triggered by swallowing, yawning, laughing, sneezing and more lately the most common trigger is talking. I am currently pretty much pain free with my current medication (Neurontin) and have been for about 6 weeks now. Though i have been feeling a bit of an irritated feeling in the back left side of my throat a bit lately and am a bit freaked that it might be coming back.

I had episodes on an off for some time before I went down the medication path.

I have also had periods where i have had more of a chronic ache rather than the spikey pain. All sorts of effects! but always on the left side in a similar spot to you.

So your symptons do sound consisent with a GN diagnosis, but if that is what it turns out to be dont panic. There are medications that seem to work and many people have significant periods of being pain free even without medication. My neurologist (who hasnt actually come across someone with GN before me) has done some research on surgical interventions and says that this is successful for many people. I am keeping that one up my sleeve in case the meds stop working.

Good luck! it has helped me to know that others have had a similar experience as it is pretty hard to explain to someone who hasnt been there. I hope it helps you too.
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