I had my first 2 severe attacks over the holidays after 2 months of a nagging earache. I took some steroids but now I am not taking anything at all. The MRI and MRA showed nothing pressing on the nerve.
Now I feel great. No symptoms at all! Could the GPN be gone for good or am I fooling myself? I’ve read many posts that talk about reoccurrences. Did the symptoms come on slowly or did the attack come from nowhere?
Thanks for your input. I really appreciate your insight into this new journey!
Jen
I've had GN for 6+ years now and for me it comes and go. I just started coming out of a 5 month period of pain and now it's been about 2 weeks that the pain level is dropping and I don't have as much difficulty swallowing. I'm not coughing and gagging as much either. I've reached a point where I'm at least I don't live in fear of the "next" time. I take each day at a time and am grateful for pain free days. I try to stay positive and active (I said I try, but not always successful). We think we must all be very special and strong people to have GN, because not very many have this. I know I've grown in so many ways, spiritually and emotionally.
This web site has helped me tremendously to cope with GN. Thank you all.
My first attack of GPN was in 99 and it lasted for many months and was severe. The first attack occurred after I had surgery with a scope put down to look at my digestive system. I was put on a compound mixture of codeine and something else to drink to ease the pain. Then after months it disappeared. At the time I was having many procedures as they were trying to get to the bottom of what was wrong with me. In the end it was multiple sclerosis but at that time no-one thought to consider that. GPN is a very rare symptom of MS. But at the time this pain struck my GP thought the specialist must have damaged my eosphagus but that wasn't the case... In hindsight now they tell me this pain was my first GPN attack which makes sense as the pain was the same as I get with it now.
I have had small attacks over the years but nothing of any real concern just intermittent stabbing for a few days which at first was put down to 'possible' pharyngitist. Then in 2007 another massive attack occurred from nowhere. I woke up, actually it was the pain that woke me, and it was there and extremely bad. I thought that was the worst it could throw at me but I was terribly wrong!!!!! My attack lasted for many months and saw me gravely ill. Lost so much weight because I simply could not eat. Had to try to eat soft foods but could only manage certain ones as certain flavours made the pain even worse.
I was hospitalised and it got to the point, even with massive amounts of IV steroids - which by the way trigger the pain worse because of the taste - that I was writhing around in continuous pain while they were going through me. It was like some demon had possessed me. I couldn't even cry as that would send violent, and I mean violent spasms of undescrible pain through me. My blood pressure was close to 300 over mid 200's because of the extreme pain. They could not get my BP down and I was lucky to survive. My BP was still extremely high when released from hospital but all they could say was there is nothing more we can do for you as we have tried everything. They had tried epileptic meds and a plethera of other things and nothing worked. I was to the point of suicide as my pain was every 3-5 mins relentlessly and more often if I swallowed or attempted to talk etc. I was like that from Nov through to end of March with it at that intensity. I was dubbed as the worse case that they could have known about as they searched databases trying to find someone remotely the same as me.
Anyway, I found acupuncture. Acupuncture has seriously saved my life and I now use it to control any niggles I have. I stopped it for quite a period of time because I felt so good only to land in hospital in a real bad way again from the GPN and the hospital once again saying nothing more we can do. All I wanted was acupuncture but they wouldn't allow it while I was admitted. So once I was out and still no better from their 'normal' treatment I began the acupuncture again and it worked. I am now studying this given I have had great results and I treat myself as well.
If you search on this site you will find some acupuncture points I have written about. I don't intend to duplicate them each time, so you will find them in a search. I would recommend that you give acupuncture a try. When going through the attacks you need to have it every second day. So have it one day, skip the next and then have another treatment. It depends how severe it is as to how quickly the response will be. It will also depend on the practitioner treating you. I was lucky to have a TCM doctor who specialised in CNS. My response was automatic but the first session did not stop it completely. The first session eased it that my attacks were coming every 40-45 minutes rather than every 3-5 minutes and that was unbelievable relief for me. The second session knocked mine on the head completely. But each person is different to how they respond and may take more sessions. The key is have them close together and then continue with maintenace treatments as remember this isn't a cure, it is a management tool.
After each of these big attacks it was very scary though as I had to learn to eat again. Had to learn not to live in fear of a sudden huge stab that would literally take my breath away. It took me months to not be scared. Had to basically learn to talk again, as in not be scared to talk and I'm normally a very talkative person.
I had acupuncture twice a week for a very long time to keep things at bay. Now I treat myself and have not had a bad niggle now for close to a 1 year (from memory), and when I say niggle it is really short stabbing pains intermittently, not continuously like I get them during full blown attacks. When these niggles occur I whack some needles in and it goes.
One thing I have discovered is that the weather can affect mine. Dry hot heat is the worst. Or say if you are exercising and breathing through your mouth and your throat gets really dry, then it seems to niggle. So I avoid those things by in summer having a humidifier by my bed when I sleep and not doing exercise that will do that to me. I try to ensure I don't do anything that makes me get that dry in the throat. I use a saline nasal spray to keep the back of my throat moist as well. I also avoid certain things that are really sweet as they cause niggles like cordials, liquor filled chocolates etc. There's also sour things I have to be careful of as well. Softdrinks, especially diet drinks are a no goer as they can trigger GPN, especially diet ones...
With GPN certain taste buds get affected as the glossopharyngeal nerve controls them. So my advice to all people with intermittent GPN is keep a diary of your attacks and look at what you have eaten or drunk. See if there is a pattern as to whether you could be triggering it with your diet as it can be triggered this way. Other times it is just the CNS triggering it - like in my case my MS attacks and these tend to be when it is really bad and the worse the attack is, the more chance you will end up with permanent damage to the nerve endings in your throat.
Also consider the weather conditions when your attacks occur to see if there is a pattern. Even though GPN is caused through cranial nerve 9 in our brain stem, we have numerous nerve endings inside our throats where the messages are sent back and forth from this nerve. If nerve endings because damaged or sensitive, which in GPN can be highly likely, certain things can and do trigger it off.
I hope this information is of use. You will never know whether your GPN is gone or not. Unfortunately until we know what causes GPN there is no real way of knowing its course. For some it is not so bad, just niggling. I know that some of you that get intermittent niggles think that is bad, but believe me some of us have had it at the other end of the spectrum with no relief that is relentless for months/years on end. Either way GPN isn't pretty but one must try to live a normal life when not having attacks but be mindful that what they drink, eat etc could provoke it. Look for triggers is my advice. It could even be things like trauma, going through extremely stressful situations etc that is a trigger. Try to find your trigger if your GPN is not caused by Eagles syndrome.
As mentioned mine seems to be my MS or it could even be my Sjogrens as I have also been diagnosed with that. But we do know that I must evidently have nerve damage to the endings,as to which autoimmune disease caused it, I will never know so I just avoid the things that I have found that trigger the stabbing caused at my throat berve endings end, and as mentioned manage mine with acupuncture which to date is working for me well. I would also suggest that if people have GPN and do not have Eagles, to be accessed for MS and also Sjogren's as these are other things that mess with the CNS in these areas.
Thank you Kaz for such a thoughtful and detailed summary of your experience with GPN. I've have had random episodes for fifteen years and I am still learning. Post such as yours help us all.
I’ve suffered with GPN for over a decade. I haven’t had any procedures and I’ve been on all the standard meds over the years. I just read Kaz’s reply and it was VERY insightful. I have always suspected the weather played a role in my GPN, but I thought it was allergens (spring and fall) that reallly set things off for me. I hadn’t correlated cold weather vs. hot weather with my GPN until I read Kaz’s post. I’m currently in a wonderful remission. I live in Arizona and the remission started when the weather here went from warm and beautiful to downright cold. I’ve always had sort of an off and on neuralgia - it’s almost ALWAYS there, but it waxes and wanes, and, come to think of it, it is much worse in the summer, which in Arizona, lasts a long, long time. I hope your GPN is gone for good! I’ve even thought that if I can power through, eventually the glosso nerve will just burn out. That would be nice! I hope you’re pain free for good, and Kaz, thank you for your very informative post and I hope you’re feeling well.
Dear Kaz, I very much identify with you. I have also found foods effect the pain level as well. I no longer have wheat.Soft drinks went years ago. I was on a juice diet for a couple of years and lost so much weight I felt week. Temperature effects me as well. I am so glad I found this site. Good luck Kas and thankyou from Australia. Warrior Woman
Kaz said:
Hi Jen,
My first attack of GPN was in 99 and it lasted for many months and was severe. The first attack occurred after I had surgery with a scope put down to look at my digestive system. I was put on a compound mixture of codeine and something else to drink to ease the pain. Then after months it disappeared. At the time I was having many procedures as they were trying to get to the bottom of what was wrong with me. In the end it was multiple sclerosis but at that time no-one thought to consider that. GPN is a very rare symptom of MS. But at the time this pain struck my GP thought the specialist must have damaged my eosphagus but that wasn't the case... In hindsight now they tell me this pain was my first GPN attack which makes sense as the pain was the same as I get with it now.
I have had small attacks over the years but nothing of any real concern just intermittent stabbing for a few days which at first was put down to 'possible' pharyngitist. Then in 2007 another massive attack occurred from nowhere. I woke up, actually it was the pain that woke me, and it was there and extremely bad. I thought that was the worst it could throw at me but I was terribly wrong!!!!! My attack lasted for many months and saw me gravely ill. Lost so much weight because I simply could not eat. Had to try to eat soft foods but could only manage certain ones as certain flavours made the pain even worse.
I was hospitalised and it got to the point, even with massive amounts of IV steroids - which by the way trigger the pain worse because of the taste - that I was writhing around in continuous pain while they were going through me. It was like some demon had possessed me. I couldn't even cry as that would send violent, and I mean violent spasms of undescrible pain through me. My blood pressure was close to 300 over mid 200's because of the extreme pain. They could not get my BP down and I was lucky to survive. My BP was still extremely high when released from hospital but all they could say was there is nothing more we can do for you as we have tried everything. They had tried epileptic meds and a plethera of other things and nothing worked. I was to the point of suicide as my pain was every 3-5 mins relentlessly and more often if I swallowed or attempted to talk etc. I was like that from Nov through to end of March with it at that intensity. I was dubbed as the worse case that they could have known about as they searched databases trying to find someone remotely the same as me.
Anyway, I found acupuncture. Acupuncture has seriously saved my life and I now use it to control any niggles I have. I stopped it for quite a period of time because I felt so good only to land in hospital in a real bad way again from the GPN and the hospital once again saying nothing more we can do. All I wanted was acupuncture but they wouldn't allow it while I was admitted. So once I was out and still no better from their 'normal' treatment I began the acupuncture again and it worked. I am now studying this given I have had great results and I treat myself as well.
If you search on this site you will find some acupuncture points I have written about. I don't intend to duplicate them each time, so you will find them in a search. I would recommend that you give acupuncture a try. When going through the attacks you need to have it every second day. So have it one day, skip the next and then have another treatment. It depends how severe it is as to how quickly the response will be. It will also depend on the practitioner treating you. I was lucky to have a TCM doctor who specialised in CNS. My response was automatic but the first session did not stop it completely. The first session eased it that my attacks were coming every 40-45 minutes rather than every 3-5 minutes and that was unbelievable relief for me. The second session knocked mine on the head completely. But each person is different to how they respond and may take more sessions. The key is have them close together and then continue with maintenace treatments as remember this isn't a cure, it is a management tool.
After each of these big attacks it was very scary though as I had to learn to eat again. Had to learn not to live in fear of a sudden huge stab that would literally take my breath away. It took me months to not be scared. Had to basically learn to talk again, as in not be scared to talk and I'm normally a very talkative person.
I had acupuncture twice a week for a very long time to keep things at bay. Now I treat myself and have not had a bad niggle now for close to a 1 year (from memory), and when I say niggle it is really short stabbing pains intermittently, not continuously like I get them during full blown attacks. When these niggles occur I whack some needles in and it goes.
One thing I have discovered is that the weather can affect mine. Dry hot heat is the worst. Or say if you are exercising and breathing through your mouth and your throat gets really dry, then it seems to niggle. So I avoid those things by in summer having a humidifier by my bed when I sleep and not doing exercise that will do that to me. I try to ensure I don't do anything that makes me get that dry in the throat. I use a saline nasal spray to keep the back of my throat moist as well. I also avoid certain things that are really sweet as they cause niggles like cordials, liquor filled chocolates etc. There's also sour things I have to be careful of as well. Softdrinks, especially diet drinks are a no goer as they can trigger GPN, especially diet ones...
With GPN certain taste buds get affected as the glossopharyngeal nerve controls them. So my advice to all people with intermittent GPN is keep a diary of your attacks and look at what you have eaten or drunk. See if there is a pattern as to whether you could be triggering it with your diet as it can be triggered this way. Other times it is just the CNS triggering it - like in my case my MS attacks and these tend to be when it is really bad and the worse the attack is, the more chance you will end up with permanent damage to the nerve endings in your throat.
Also consider the weather conditions when your attacks occur to see if there is a pattern. Even though GPN is caused through cranial nerve 9 in our brain stem, we have numerous nerve endings inside our throats where the messages are sent back and forth from this nerve. If nerve endings because damaged or sensitive, which in GPN can be highly likely, certain things can and do trigger it off.
I hope this information is of use. You will never know whether your GPN is gone or not. Unfortunately until we know what causes GPN there is no real way of knowing its course. For some it is not so bad, just niggling. I know that some of you that get intermittent niggles think that is bad, but believe me some of us have had it at the other end of the spectrum with no relief that is relentless for months/years on end. Either way GPN isn't pretty but one must try to live a normal life when not having attacks but be mindful that what they drink, eat etc could provoke it. Look for triggers is my advice. It could even be things like trauma, going through extremely stressful situations etc that is a trigger. Try to find your trigger if your GPN is not caused by Eagles syndrome.
As mentioned mine seems to be my MS or it could even be my Sjogrens as I have also been diagnosed with that. But we do know that I must evidently have nerve damage to the endings,as to which autoimmune disease caused it, I will never know so I just avoid the things that I have found that trigger the stabbing caused at my throat berve endings end, and as mentioned manage mine with acupuncture which to date is working for me well. I would also suggest that if people have GPN and do not have Eagles, to be accessed for MS and also Sjogren's as these are other things that mess with the CNS in these areas.
I've had GN for 6+ years also. It started one day out of the blue without warning when swallowing a glass of water. I also have TMJ and a pinched nerve in my neck, along with other neck issues.
All of the replies pretty much describe my experience as well. I'm currently taking anti-seizure meds forthe GN. After many years of different doctors and tests, I was diagosed approx 3 years ago. I have intermittent "niggles" all of the time and extreme pain 15-45 minutes. I've never had high blood pressure, but it has gotten higher due to the pain.
For me, knowing my triggers has been very helpful. Food is easier for me to swallow than liquid. Soft drinks are out. Hot drinks are usually easier to swallow, however, sometimes it is the opposite. Go figure. Stress is really a factor, so I try to stay calm and in the present as best I can. Try to stay rested. Wind is the worst, hot or cold. I wear a scarf or something around my neck now.
And, yes, Acupuncture has been the BEST. Definitely worth looking into. The person I go to took the time to research GN, and is very up to speed with GN. I'm going to check out the trigger points that Kaz mentioned.
As I posted earlier, I seem to be coming out of the pain cycle. Wow. One day at a time, though. Now is the time to take walks again and do the things that help with stress and avoid exhaustion. The surgery has been postponed for four months due to work situation, but I'm still reluctant to have it. I think about just powering through also and maybe it will go away! On the other hand, I'm afraid the longer I wait, the harder the recovery, especially at 59 years old.
I wish you well and will stay tuned for word of your progress.
I've been suffering with gpn now for 2 years and although on Tegretol, am in pain most days. HOWEVER, there are weeks where the pain is so dull I barely notice it and then all of a sudden it comes back with a vengeance. I've read numerous reports on gpn suffered who can go for months or even years with no pain - and they're the days you pray for. I would say, without trying to be negative (as I'm delighted you're pain free) is to treat gpn with caution. My experience is that is has its own life form that drugs and pain relief can't touch most of the time. It can go away and come back, all within minutes and I've definitely heard from people who talk about a "gpn recession". If yours is indeed in recession, it could be like that for years and let's hope the years are long or it never comes back! Just be cautious and do what I do in a "recession" (mine are only ever mini-recessions unfortunately) - live life to the full and treat each pain free day as an absolute bonus.