dealing with GN
 

recently discovered I have GN, what a rollercoaster this has been. The pain is localized to the right side of my tongue so severe at onset that I am unable to eat,drink or even talk. I can understand why some people choose suicide. The pain is usually worse at night subsiding in the mornings somewhat. Does anyone know of where I can receive help for a treatment plan as I am one of many americans with no health insurance.

Hi. Welcome to Neurotalks

Since I didn't know what GH (Glossopharyngeal Neuralgia) was, I googled it. I found this information (as I'm sure you have been told what this is)

Here is what I found:
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Copied from the following website:

http://www.ninds.nih.gov/disorders/g..._neuralgia.htm


Is there any treatment?

Most doctors will attempt to treat the pain first with drugs. Some individuals respond well to anticonvulsant drugs, such as carbamazepine and gabapentin. Surgical options, including nerve resection, tractotomy, or microvascular decompression, should be considered when individuals either don’t respond to, or stop responding to, drug therapy. Surgery is usually successful at ending the cycles of pain, although there may be some sensory loss in the mouth, throat, or tongue.
What is the prognosis?

Some individuals recover from an initial attack and never have another. Others will experience clusters of attacks followed by periods of short or long remission. Individuals may lose weight if they fear that chewing, drinking, or eating will cause an attack.
What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes at the National Institutes of Health conduct research related to GN in its clinics and laboratories and support additional research through grants to major medical institutions across the country. Much of this research focuses on finding better ways to prevent, treat, and ultimately cure disorders such as GN.


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Has your physician even talked about surgery? At least that would stop the pain.

I understand you have no health insurance. What state do you live in?

Perhaps one of our members might know a free clinic that treats people.

Keep posting and one of us will try and help you.

Take care (and keep your chin up). My husband has been living with Neuropathy for 20 years and he used to consider suicide.Thank goodness he is still with me.

Melody

Hello Beverly
 

http://dl9.glitter-graphics.net/pub/...acou6ylr1o.gif I'm glad you indicated what GN stands for when I visited your profile page.....I must embarrassingly admit I did not know for sure :o I knew it had to be 'some' sort of Neuralgia or Neuropathy condition, as that is what a lot of us must deal with on a daily basis,......so I completely understand why you describe the pain as 'suicidal'.....many have used that description and it seems only the people who suffer pain on this level can understand this.

You have come to a wonderful place for support!
I looked up your condition and find that you suffer severe pain including your tongue, throat, ear, tonsils, etc......due to compromised facial nerves. Am I close? This must be absolutely aweful! :(

There are several places here that you could benefit greatly from. One of my good friends here is very active in the TN forum.
Just ask if you need help in finding your way around.
I found many friends by scrolling down the forums listed in the main menu and visited several of them. I now spend most of my time in the Peripheral Neuropathy and SCS forum
7 Months ago I came to this forum thinking in terms of wanting my life to end, and now I have found so much hope and support....and above all "Knowledge"!! People dig deep here at NT to find ways to combat the pain, because, like you indicated, lack of insurance, or not being able to 'wait' on getting answers from doctors......
We don't diagnose or attempt to take the place of medical professionals, but we DO take the steps it requires in staying above our conditions!!
We build our strength off of one another here.

It'll be good getting to know you. Let us know what you've been told so far about your condition and what you've tried......
The MAIN thing is to hang on to HOPE!! Things CAN and DO get better, we have to be determined. There are many wonderful subforums here which are packed full of information on how to combat pain on this level.....

Thank you for introducing yourself and please stick around!
You'll be amazed at how caring people really can be!!

Keep the Faith
Rae
:grouphug:

Hello & Welcome Beverly
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Check out the following tread they will be someone there to assist you:

http://neurotalk.psychcentral.com/forum105.html

Again welcome, looking forward to seeing you around.

Darlene :hug:

Welcome
 

Hello Beverley. Welcome you to NeuroTalk, but I'm so sorry that it was this extremely painful condition that brought you to us. :(

I'm sorry that I'm unable to help you with insurance or where to get treatment because I live in a different country, but I do think it's a neurologist you should be seeing.

I have done some reading in the past about Glossopharyngeal Neuralgia, as I communicate (via the internet) with an MS sufferer who has this condition, so below I've given you a bit more information that I hope will help you understand it a bit more.

Glossopharyngeal Neuralgia is one of the rarer symptoms of Multiple Sclerosis and is similar to Trigeminal Neuralgia. GN affects one side of the neck and is secondary to 9th cranial nerve compression by arteries and veins ..... where the nerve exits the pons and brainstem, in the brain.

Glossopharyngeal neuralgia is different to trigeminal neuralgia (which causes similar pain) and the differences are well described here : http://www.merck.com/mmhe/sec06/ch096/ch096h.html

Initial treatment is usually by steroids (cortisone), either orally or by infusion, and then controlled by one of the anti-epileptic medications with the aim of blocking the messages getting to and from that cranial nerve.

Some people do get relief from acupuncture and certainly worth trying. I did a quick search for you and found quite a lot about GN and acupunture on the internet. http://www.google.com.au/search?clie...=Google+Search

I also did a search for all the posts that have been made about Glossopharyngeal Neuralgia here on NeuroTalk. Have a look through them. Hopefully you'll find something there to help.
http://neurotalk.psychcentral.com/se...geal+neuralgia

I hope your pain is controlled quickly as I can well imagine the agony you must be in. Also try to keep up the fluids Beverley, although I daresay you're probably too frightened to eat in fear of starting the pain off again.

I hope some of that has been helpful. I also hope you get the info that you need regarding insurance.
Please let us know how you get on. :hug:

My Mother has GN
 

I just ran across your post. I'm desperate to speak with someone who has suffered this disease. My mother has just been diagnosed and it's breaking my heart to see her in such distress. She has been in continuous pain now for 8 weeks. She finally found an ear/nose/throat specialists two weeks ago who recognized what he might be dealing with. He sent her to a nuerologist and she's been taking Tegretol for 9 days now. She has not been able to tolerate this medicine. She throws up repeatedly and has terrible diarreah. She has also started having tremors. We wonder if we should search for a new doctor who has more experience with this. I would appreciate hearing about how your treatement has progressed and if you have been able to find a way to manage this disease.

Great to meet you!!