Does anyone else have difficulty speaking when your GPN symptoms flare up? I am in sales, so I have to do a lot of talking which makes the condition very troubling. I must admit that even non-work related interactions cause me problems because I'm not able to project my voice. My episodes (neck pain, ear unpopped, breathability, vocal issues) seem to last for 3-6 months and then subside leaving me feeling alive again. Hoping someone else has dealt with and overcome. Thanks...
XRoddRR, this seems to be a common issue with many folk who have GPN.
I had the nerve severing surgery so no longer have the GPN pain (thank God!) but was left with swallowing issues. Cannot speak more than a few sentences before becoming hoarse then losing my voice totally. Coughing episodes that lead to feeling as if I am going to choke. Cannot sing or project my voice. I am thankful to be retired and I sure feel for you being in sales. I've toyed with having some business cards printed up that let people know why I can't chat with them. I've eliminated most social scenes from my life. Dreading my daughter's wedding next summer because I won't be able to chat with people. But, I am still very thankful to no longer have the GPN pain. Could not live with that.
Yes, unfortunately this is an issue for me. My first go around with GPN I sounded deaf, this time apparently I sound more “British,” but I believe it has changed again as people have great difficulty understanding me. My daughter and husband who usually can figure out what I’m saying have been having trouble. It has always been painful to speak.
It is one of the main reasons I can’t work.
I hope that yours won’t ever be that bad, especially with your job.
Yes, this is an issue I experience also. I also work where I need to communicate , talk to customers.
First the pain in my mouth/ throat affects my voice , plus if I try to speak a long time or project my voice , I can't.
Sorry, still going on for me since Spring this year .....waiting
Hoping it gets better for you soon.
I had a very successful MVD five years ago, but prior to that I had problems with projecting my voice as well. If I tried to project, I would instantly get an attack of severe, lancinating pain. My voice also seemed hoarse when I would talk quietly, but that may have just been my efforts to keep my voice volume down that caused that. I went through a similar cycle of flareups and remissions until I had a very prolonged flareup where my medications no longer had any positive effect and my inability to swallow prompted me to seek out a surgical solution. Since my surgery, I have had absolutely no GPN pain or dfficulty with speaking or swallowing. I wish I could offer you a solution to the speaking problem without surgery, but I can't. I would recommend MVD, though, if you get to the point that GPN makes everyday life unbearable, as long as you're a candidate for it, that is. I wish you well.
I have MS, GN,TN and I get garbled words. Or! I mean to say "hello how are you ?" and I say" agf smf blat" or "you stink".
Or I cannot control the volume AND I YELL! I do not get this a lot just enough to make me bonkers and I deal with it comedic. If I start to yell, I run to the ladies room and talk to myself until I sound ok. The other words, I just roll my eyes to Jesus and plow on.
Funtsie
I too have thought of having a card to hand people. When this first happened I walked around with a notebook to write in and even tried to learn sign language. I quickly realized that 1. My town was small enough that everyone knew my problem and would work with me and 2. Since it was so small there weren’t enough people who could use sign language.
I hate, HATE having to speak on the phone when I have a flare-up. I will usually ask someone to speak for me instead.
braehl said:
I had the nerve severing surgery so no longer have the GPN pain (thank God!) but was left with swallowing issues. Cannot speak more than a few sentences before becoming hoarse then losing my voice totally. Coughing episodes that lead to feeling as if I am going to choke. Cannot sing or project my voice. I am thankful to be retired and I sure feel for you being in sales. I’ve toyed with having some business cards printed up that let people know why I can’t chat with them. I’ve eliminated most social scenes from my life. Dreading my daughter’s wedding next summer because I won’t be able to chat with people. But, I am still very thankful to no longer have the GPN pain. Could not live with that.
I would assume most do since it affects the esophagus. I had to mumble my sentences before I had the MVD.
I worked in sales for 11 years and it was a problem. It was embarrassing becauce when it flares up I cough and can not talk. I now work as a cashier & it is very annoying when you are trying to talk with people and you are in pain & can't help but cough. Something that did help me was I went to a speech therapist and he taught me to project my voice from my diaphram instead of straining my vocal cords. For so long when I tried to raise my voice it would come out very strained and squeeky. Now I can raise it if need be. My husband has said he wants to hunt that therapist down. :-) I also hate to talk on the phone much because the phone against my ear when the neuralgia is acting up will set it off. I never answer the phone now on that side.
Arlene
I have the same problem with my voice. I've had MVD surgery on both sides, and the pain is much better, but I still have flare-ups that last a couple of weeks at a time, coming every couple of months. I'm a middle school teacher, so it's very difficult to do my job well when it happens. The neurologist, surgeon, and ENT doc all have tried to convince me that I'm protecting my voice because I'm afraid of the pain. I've tried to tell them that no matter how I try, my voice is very hoarse and weak. I can't project at all, almost sounding like I'm whispering. I just wait a couple of weeks, and my voice gradually returns. I wish they'd believe me. I'm sorry you're having the same problem, but it's good to see I'm not the only one. I hope someone shares a way to overcome it, too.
XRodRR,
I have the same issues regarding difficulty in speaking when I have a flare up. I used to have excruciating pain when I tried to speak during an attack but I had Gamma Knife Surgery (Major shot of radiation on the nerve) and it has help somewhat. I have also learned that when a flare up begins that I need to increase my meds right away per my neurologist's guidance (talk to your doctor) and also control the triggers better. For example, if I have been talking a lot then I need to stop, if I have been eating ice then don't, and for heaven sake don't yell..I have had this for 6 years now and although I wish I didn't I am getting pretty good at managing. I know that may not be okay for everyone but for now, it works for me. Praying for your complete healing.
Patty
I have swallowing issues during a flare-up, and I become hoarse. In preparation for my MVD, scheduled for Nov. 7, I had a contrast-dye swallowing study. I wasn't having a big flare up, and they said I am swallowing OK. However, they did say I speak in gasps....i.e. I grab air and then talk. This may be due to sinus problems...it's difficult to breathe through my nose. After hearing others who have had MVD and subsequent swallowing problems, I am concerned about this. This is one reason I ruled out a rhizotomy at this point. Nevertheless, I shall proceed with MVD with prayerful confidence.
Thanks for the reply. I do agree on the gasps issue. Best wishes on the MVD.
braehl said:
I had the nerve severing surgery so no longer have the GPN pain (thank God!) but was left with swallowing issues. Cannot speak more than a few sentences before becoming hoarse then losing my voice totally. Coughing episodes that lead to feeling as if I am going to choke. Cannot sing or project my voice. I am thankful to be retired and I sure feel for you being in sales. I've toyed with having some business cards printed up that let people know why I can't chat with them. I've eliminated most social scenes from my life. Dreading my daughter's wedding next summer because I won't be able to chat with people. But, I am still very thankful to no longer have the GPN pain. Could not live with that.
Appreciate the reply. Working through the issue is tough, but I'm hopeful can be controlled with medication.
hmschmom said:
Yes, unfortunately this is an issue for me. My first go around with GPN I sounded deaf, this time apparently I sound more "British," but I believe it has changed again as people have great difficulty understanding me. My daughter and husband who usually can figure out what I'm saying have been having trouble. It has always been painful to speak.
It is one of the main reasons I can't work.
I hope that yours won't ever be that bad, especially with your job.
Great feedback on your procedure. I'm glad it worked well for you. If you don't mind me asking, how long ago did you have the MVD?
KayJay said:
I had a very successful MVD five years ago, but prior to that I had problems with projecting my voice as well. If I tried to project, I would instantly get an attack of severe, lancinating pain. My voice also seemed hoarse when I would talk quietly, but that may have just been my efforts to keep my voice volume down that caused that. I went through a similar cycle of flareups and remissions until I had a very prolonged flareup where my medications no longer had any positive effect and my inability to swallow prompted me to seek out a surgical solution. Since my surgery, I have had absolutely no GPN pain or dfficulty with speaking or swallowing. I wish I could offer you a solution to the speaking problem without surgery, but I can't. I would recommend MVD, though, if you get to the point that GPN makes everyday life unbearable, as long as you're a candidate for it, that is. I wish you well.
Thanks for sharing. Hope it gets better for you as well.
TL said:
Yes, this is an issue I experience also. I also work where I need to communicate , talk to customers.
First the pain in my mouth/ throat affects my voice , plus if I try to speak a long time or project my voice , I can't.
Sorry, still going on for me since Spring this year .....waiting
Hoping it gets better for you soon.
Yes.
There are times my own family can neither hear me nor understand me. I barely speak to anyone anymore. Had an awful woman threaten and screech at me like a two year old yelling horrible things to me about how I was using my “soft little sexy girlie-girl voice” to “browbeat” her husband (hired to do a job we were calmly and easily discussing before her appearance on the scene) i had to just shut up and take it because i could barely talk, let alone defend myself. Anyway, rinse, repeat, more times than I can count. We GAVE these people and their 52 horses a place to live when they lost their farm, and this is how I am treated. No good deed goes unpunished. The kids and I have joked that I should auto tune it to some song and put it up to show the stigma I’ve endured as I have hours of this kind of stuff recorded. Nobody would ever believe such ridiculous abuse.
No one should have to go through this kind of stuff because of a sickness or disability. If everyone would just treat each other with kindness and tolerance, the world would be an awesome place! I wish there were better answers for us. I wish I had overcome the problem. I just deal with the hand I’m dealt and those who end up in my path. Not sure what else there is to do, but looking forward to the responses of others for good ideas.
Ellen
I understand, that’s for sure. If I could count the times per day people say, “what?” Because they didn’t hear me. I’m hopeful the new med’s I’m on will help. Best wishes…
I’m curious how many of you have had a Dr tell you that your voice shouldn’t be affected by GPN?