GPN........depressed......scared...............

Replies to This Discussion

Permalink Reply by Grace Mackay on March 2, 2010 at 11:02am

Billie, I'm so sorry that you have this and that you are having a rough time of things, I would have a look at eagle syndrome, only because you mentioned not being able to swallow unless your head is on a specific angle.
With GPN the MVD is much more dangerous, and I was told that a nerveblock was out of the question for me, but I'm waiting on more scans to see if my G nerves are being compressed within my throat, ( rather than within my skull, because the MRI was all clear) by an elongated styloid process,( bony protrusion from the skull, or a calcified ligament) and if that is the case, then it is a much less dangerous op than the MVD and much quicker recovery.

Anyway I just thought I would mention it as something else to look at, I have had a nightmare trying to find an accurate diagnosis, and I'm still waiting for relief too, so I can fully sympathise.

Anyway all my best wishes to you, and I hope you get some relief soon. It's a horrible thing.

Gracie x x x

Permalink Reply by Billie Conrade on March 2, 2010 at 2:36pm

Grace: I have been researching for 2 hours about Eagles Syndrome, considering how I have NO symptoms while lying down. I think this is the issue. I cant stop crying. This is making me crazy.

Grace Mackay said:

Billie, I'm so sorry that you have this and that you are having a rough time of things, I would have a look at eagle syndrome, only because you mentioned not being able to swallow unless your head is on a specific angle.
With GPN the MVD is much more dangerous, and I was told that a nerveblock was out of the question for me, but I'm waiting on more scans to see if my G nerves are being compressed within my throat, ( rather than within my skull, because the MRI was all clear) by an elongated styloid process,( bony protrusion from the skull, or a calcified ligament) and if that is the case, then it is a much less dangerous op than the MVD and much quicker recovery.

Anyway I just thought I would mention it as something else to look at, I have had a nightmare trying to find an accurate diagnosis, and I'm still waiting for relief too, so I can fully sympathise.

Anyway all my best wishes to you, and I hope you get some relief soon. It's a horrible thing.

Gracie x x x

Permalink Reply by Billie Conrade on March 2, 2010 at 2:42pm

Ro, thank you for the kind words. I dont quite understand where you press when swallowing. I am game for anything. LOL
I am so depressed and cant stop crying. I have been researching Eagles Syn. and cant help but wonder if this is what it is. It seems to me I need to go back to my ENT and have a 3d CT done. I dont take anything for thyroid and did not have an u/s done on my thyroid.
I just feel so alone in this, no one seems to understand not even my Dr's. I litteraly cant function at all. I cant do anything right now but lay completely flat with a small pillow under my head on my side. Thank you so much for replying. I may end up in the ER tonight because I know I am dehydrated badly and losing weight is making me so weak. I just cant stand this, sometimes I feel like I would rather be dead. NOT that I would do anything, I would NOT. Just sayin.
Billie

Ro ~ said:

Hi Billie,

Sorry to hear about the problems and frustrations. It's quite difficult to go with the flow when it comes to forms of TN. It's unpredictable and many specialists seem to have that same answer. the 'i don't know' part.
If I may allow me to tell you that what you are going through, some others have to.

My first neurologist was awesome at diagnosing but if medications didn't go as he thought, he just didn't respond or told me to look it up on the web. I've also got seizure disorders so that made it a bit more complex. The part where you can't swallow, what I do is take my hand and place my fingers at the bend of my throat, gently press it when you are swallowing something. I've had a heck of a time swallowing the medications i take. this helped me. not sure if it will help you but it's food for thought.

Stress makes this worse. it will come and go. I've lost my voice with thing a great deal of times. What helps is if you can find a way to keep drinking fluids. I know it's difficult but that appears to be an important part. I drink constantly, all day long. If I don't in a matter of a couple hrs, i lose my voice (on and off)

did they happen to give you and standard ultrasound of your throat? by chance do you take anything for thyroid?

Lastly, my neurologist is also at his wits end. What I did so he didn't feel insulted, I asked would he be able to talk to his associates and maybe put their heads together. Prior to this neurologist, I had several that I wasn't satisfied with. My preference is a doctor who will believe me when i have a bad reaction to meds.
ok, enough of my babble. I looked up the GPN and tried to get more information for you.

I personally don't understand all the terminology but it's something ~ maybe your doc can read? food for thought.

http://www.jstage.jst.go.jp/article/nmc/48/4/48_163/_article

http://www.ajnr.org/cgi/content/full/27/3/705

GPN - Other possibilities

Permalink Reply by Billie Conrade on March 2, 2010 at 3:35pm

Thank you so much, I think this is helping me ;) I am heading to the Dr. shortly. I will report back on what happens.

Ro ~ said:

hi billie,

i guess that is a bit hard to explain what i meant but i'll give a better try to.. if you run your your hand under your chin to your neck, tilt ur head down a little and swallow. the muscle is right there. you'll be able to tell if the muscle is weakening. I put a light pressure and then i can swallow. i hope i explained it well. eventually i found that if i put pressure or tilt my head down while swallowing it helps.

Permalink Reply by Billie Conrade on March 5, 2010 at 10:52pm

Well, I went to a wonderful ENT. He listened to me and said it sounds like GPN. Then when I explained that the pain is gone when I lay down and when I turn my head to the unaffected side he said hmmmmmm. I said what about Eagle Syndrome? He did some more examining and felt a rather bony lump in the affected side under my ear and asked if I have felt that before. I said yes and no one seemed concerned. He said he strongly suspects Eagle syndrome. I had xrays today and have another appt with him next week. I looked at my xrays, had a copy made for me, and my styloid process is definately much longer on the affected side. I am sooooo hoping this is it and it is not GPN. Because I can have the styloidectomy and hopefully that will relieve my pain. If it is GPN he is going to put me on Tegratol! I would rather not have to live on meds if I dont have to.
Now here is the catch, this Dr. only does the styloidectomy from the outside. He showed me where the insicion would be and it is quite long, along the jaw bone and underneath the ear. But, if this stops the pain, I am game for a bit of a scar and surgery.
I am having my first day in 8 days that I can eat and drink normally. I am feeling better emotionally and physically today. Woooohoooooo!
I will keep updating this because I want it to help someone else going through this crap. We need all the comfort, support and reassurance we can get with this crap.

Ro ~ said:

Awesome! keep us posted? Good luck!

Billie Conrade said:

Thank you so much, I think this is helping me ;) I am heading to the Dr. shortly. I will report back on what happens.

Ro ~ said:

hi billie,

i guess that is a bit hard to explain what i meant but i'll give a better try to.. if you run your your hand under your chin to your neck, tilt ur head down a little and swallow. the muscle is right there. you'll be able to tell if the muscle is weakening. I put a light pressure and then i can swallow. i hope i explained it well. eventually i found that if i put pressure or tilt my head down while swallowing it helps.

Permalink Reply by Grace Mackay on May 3, 2010 at 8:15am

Hi Billie,

I am so pleased that you have got a diagnosis, I got mine last wednesday with a confirmation of an elongated styloid process, and I am just waiting for a surgical consult now.

Personally I think I would prefer them to go in from the outside, it's apparently safer and better visibility and haemorrage control etc.
I've only had this for 2.5 years, and it's been a long slog battling to get answers, and much longer for you but I understand how you feel. I am still taking tegretol, and I feel that it helps a lot, but it took a long time to get used to it, the world doesn't quite end with it ( although it feels like it to begin with !)

But I wish you the best of luck with this and hope all goes well for you.
Much love

Gracie x x x

Permalink Reply by Monica Sanders on July 21, 2010 at 5:11pm

Billie, I have been there, continue to be there; can relate to what you are going through. It feels like there is a knife stabbing my throat from the inside. I only eat one meal a day although I drink a lot of fluids despite the pain as I am on hydrocodone 60 mg a day which some times helps depending on weather. If the barometer is up such as rain coming in I am in intense pain. Mine is on the left also. I lay on my right side most of the time watching TV. Sad way to live your life, huh? Mine never goes away. It is going on 3 years and they talked about gama knife surgery although now they don't know. Let me know how you are doing sweetie. I truly understand. Monica in San Antone

Permalink Reply by elaine48 on July 2, 2011 at 6:40pm

billie are you near any university centers? the best bet for diagnosis.

i moved from NY to Fla, but i still do not have a real diagnosis. the best is hypothesis. 

Permalink Reply by elaine48 on August 14, 2011 at 2:14am

i need a diagnosis and this should be your goal. see a neuro at a university center. try for a referral. many drs that work with headaches also diagnose this. try google.

where are you in ny. im from nyc.