So, my GPN had been in remission with 2000 mg of neurontin and now today I got a sharp pain in my throat while taking a drink of soda 
now I kinda have a little irritation there. I’m so scared I just started back working on an ambulance as a medic in November and I have just started a long distance relationship with a really great guy. I love my job and just started getting my finances in order. I’m trying to save my vacation time at work to take a trip back to my home state of Michigan in August. I have crappy insurance now and I don’t want to have to quit my job. I’m so very scared, as soon as things are starting to look up for me this stupid awful pain is trying to rear its ugly head!!! I’m afraid to tell my family that I live with and my friends because they’ll worry so I’m turning here for prayers. I can’t stop worrying that the pain is coming back which is making me s nervous wreck and I’m back to being terrified to take a drink of soda or eat anything. Ugh!!!
And oh. One more thing…it seems that I get this pain every year at the same time!! Last year it started at this exact time also. Anyone else have this? And why is that? It’s spring here in Arizona but…I don’t know
Cheri, sorry to hear you are having a flare up. I also have flare ups with my GPN In the spring and fall and often have to up my dose of neurontin. I was diagnosed 6 years ago and have learned to manage my flare ups my self in other ways. I usually notice subtle signs I’m getty a flare up, besides the obvious throat pain I find I get really fatigued and I feel a bit like I’m getting a temputure, almost like my body is trying to fight it. I will quit drinking any alcohol at it depletes the nervous. System of vitamin. B which is critical for your nervous system and Ill start taking a larger dose of vitamin B as well as upping my dose of neurontin. I will try to get extra sleep and try not to get stressed. Every time I feel any small symptom come on, I do these things and I have been able to keep it from exploding into a full on debilitating episode. I feel like it is kinda of a viral thing that come and goes as my immunity is weaker especially. In the spring and fall when the seasons are changing… I hope this helps
Hi Cheri, I'm from Aust so don't know what they weather is like there but assuming it's starting to warm up? Pay attention to the humidity scale as you may find that drier weather affects it more as that is the case with me. Also I cannot drink things that are acidic anymore like lemon or pineapple juice. Soda water and other softdrinks will also trigger pain, same with cordial. Certain taste buds become affected with GPN. I know with me certain sweet things or acidic are a big no-no.
What may have happened with you is that is could be a combination of dryness irritating the nerves inside your throat and also the combination of drinking a soda. Maybe try to lay off the soda and see what happens. If you find that the air at the moment is more dry than humid, try sleeping with a vaporiser on in your bedroom to moisten the air more. This is what I do as I know the drier my throat is the more likely I can trigger an attack. I've been lucky so far to have only had a small attack in the last 1 1/2 years.
I manage mine with a combination of acupuncture, products to help moisten my throat and nose in drier weather. My attacks have always started when there has been little humidity. My neurologist has said breathing the drier air probably antagonises the nerve endings that are already over sensitive and triggers an attack.
Maybe keep a diary of what things you have had when it triggers and also note the weather conditions as in the dryness. Also look at your stress levels, as I'm the same as Justin where stress can also trigger attacks. I wonder whether that could be related to breathing patterns during periods of high stress?! Whether we unknowingly during these times mouth breathe more... Something for me to pay more attention to.
My guess and belief is that barometric pressure will trigger GPN pain.
Cheri Freytag said:
And oh. One more thing…it seems that I get this pain every year at the same time!! Last year it started at this exact time also. Anyone else have this? And why is that? It’s spring here in Arizona but…I don’t know
Hi everyone..It still hasn't gone into a full attack but I know that it's there if that makes sense. The dryness thing is kinda interesting, I live in the desert and it is more humid in the winter until about now and then it starts to get drier..I am going to try the humidifier thing and see if that helps because I do seem to feel a bit drier in my throat..I'm also going to try laying off the sodas. I have been drinking energy drinks, I don't know if that's good for me but, it's my coffee and it does have lots of Vitamin B. Thanks again for all of your advice, if this gets much worse I'm going to need to go on disability and I don't want that..I love to work and can;t stand to sit my butt at home
I to live in a very dry environment in the southwest. Never had a prolem with dryness triggering an episode. But sugars certainly have set on off. From the forums I starting to believe there are at least two causes for the GPN. some physical cause and a viral cause. Mine acting monsetre like a virus, I’ve able to controlled it a bit better when there is an onset of the symptoms.
Hi Cheri. I know how you are feeling. If I feel more pain then usual, I get real scared too. I don't want to eat or move my body. The pain as you know, can get really bad. Hopefully, this pain is a fluke and you will be fine. Maybe you need more medicine. Last year my whole stomach hurt. I was geeting very sharp pain, pulling, and burning. My throat and mouth hurt the same way. I uped my nortiptyline. It took of the edge after a few weeks. I have noticed the month of August is the worst for me, although September was not very good either.
I will keep you in my thoughts and I will pay for you. I hope as I am writing this that you already feel better. Remember, God is with you always.
Blessings, Jenelle
Kaz, I am interested to here more about how you control your GPN with accupuncture. Right now I am on my limit of 4800 mg. of neurontin and 300 mg. oxcarbonzapin (sp). I am finding myself allergic to more and more drugs the try so I am getting limited on what I can take. Thanks, Sally
Kaz said:
Hi Cheri, I'm from Aust so don't know what they weather is like there but assuming it's starting to warm up? Pay attention to the humidity scale as you may find that drier weather affects it more as that is the case with me. Also I cannot drink things that are acidic anymore like lemon or pineapple juice. Soda water and other softdrinks will also trigger pain, same with cordial. Certain taste buds become affected with GPN. I know with me certain sweet things or acidic are a big no-no.
What may have happened with you is that is could be a combination of dryness irritating the nerves inside your throat and also the combination of drinking a soda. Maybe try to lay off the soda and see what happens. If you find that the air at the moment is more dry than humid, try sleeping with a vaporiser on in your bedroom to moisten the air more. This is what I do as I know the drier my throat is the more likely I can trigger an attack. I've been lucky so far to have only had a small attack in the last 1 1/2 years.
I manage mine with a combination of acupuncture, products to help moisten my throat and nose in drier weather. My attacks have always started when there has been little humidity. My neurologist has said breathing the drier air probably antagonises the nerve endings that are already over sensitive and triggers an attack.
Maybe keep a diary of what things you have had when it triggers and also note the weather conditions as in the dryness. Also look at your stress levels, as I'm the same as Justin where stress can also trigger attacks. I wonder whether that could be related to breathing patterns during periods of high stress?! Whether we unknowingly during these times mouth breathe more... Something for me to pay more attention to.
Cheri, Good luck finding something that works for you. I think it is different for everyone. But I do notice that for me too stress plays a major role. I will definately keep you in my prayers. I am trying yogo to help me learn how to control my stress... Good luck to you! Sally
I'm still so scared, it seems to stay at about the same pain for a few days and then it gets a little worse..right now I can only take small drinks of anything. I can still function and work but, I just pray it doesn't get much worse. I can't really up my medication dose since my main job at work is driving and we drive long distance. I just pray every day that I don't have to miss any work, I need my vacation time for my trip to Michigan, I spent over 500 dollars on my airline tickets. I thought about applying for family medical leave but,I haven't worked at my job long enough (it has to be a year) and they can take away any vacation time that I have..I still haven't told my family, my mom has medical conditions of her own and I don't want her to worry, she's going to figure it out eventually because I've been crying at the drop of a hat. :( I live with my parents and help them since they are older. I can't really make an appointment with my neuro because it's over 2 hours away and I would have a hard time keeping that a secret and he just wants to do surgery which I can't do because I really need to work :( Thanks for listening to my rants..I hate GPN!! It has a way of screwing up any and all plans and my life!!!
I too can not drink carbonated or citric drinks, it for sure sets me into a HUGE bout of zapping in the throat. I am sorry your going through this and hope you get past this bout with minimal affects. Take care of you.
Why would my GPN only be acting up in the morning until about the middle of the day? Anyone have any ideas?
Billie said:
I too can not drink carbonated or citric drinks, it for sure sets me into a HUGE bout of zapping in the throat. I am sorry your going through this and hope you get past this bout with minimal affects. Take care of you.
It all depends on what is causing your GPN. For example is you have MS it can be caused from inflammation on the 9th cranial nerve. It also can be triggered by certain flavours, dryness of the air and possibly other inhaled irritants. Exercise when the air is dry will also lead to niggling in some people. Have a look at what you were doing and/or eating and drinking this morning. Also those energy drinks you drink are not good for it either!! I know you said you need it for the energy hit but they're not good for the neuralgia as the sweetness can trigger attacks. You need to have investigated why you are so tired. Maybe you are anemic. I know constant attacks really wear you down as being in pain constantly is awful.
I know what you mean about only tiny sips as when my attacks were bad (my big attacks last up to 6 months with constant pain every 3-5 mins lasting anywhere between a few secs to approx 1 1/2 minutes. The longer the spasm, the more painful and it then leaves my tongue feeling like it's smoking from being burnt. My small niggling attacks are a piece of cake compared to the biggens!!!) ;-)
With my big attacks I can't drive at all. I can barely do anything. I can't even cry as the motion of crying triggers waves of insane burning, zapping etc. The only way I can describe my bad ones is like being attached to a TENS machine on my tongue and throat and having it turned up all the way. My tongue actually feels like it convulses.I always lose many kilos on those big attacks as I can't eat. The only thing I can manage is baby size egg custard, stewed apples, vegetable broth soup etc, but even with those it takes ages to get it down because every swallow sets a massive spasm of pain off.
You need to work out your triggers, as this can come on by itself at times due to inflammation or damage, but is aggrevated also by certain triggers. Like if you have a cold and constantly coughing. At first the pain may not trigger but over time with continual coughing it triggers it. Same with drinks too.
@Sally I use acupuncture and also avoidance of triggers such as certain drinks and flavours. I take high strength fish oil (must be minimum 1g EPA content in order to reduce inflammation), 8-12,000mg of flaxseed oil daily plus other supplements. I try to reduce the inflammation in my body as much as I can. I have tried ALL of the anti-epileptic meds and none worked. The specialists actually said there is nothing more we can do for you. My attacks were so severe my heart and respiratory were stopping!!! Acupuncture was the thing that literally saved my life. I posted some acupuncture points in another post. I will see if I can find it and post the link on here.
@ Sally - here is the link to the other discussion
Hi Cheryl -
After enjoying an almost year long remission without any pain meds/nothing, my pain came back last week. It is stabbing in my ear and going through to my throat like an ice pick. I had not started back on the Neurontin because I am going to see if accupuncture will throw it back in to remission. And there I was thinking it was gone for good! No such luck.
I hope you are feeling better today!!
Kara
Cheri, for 12 yrs now I have gone back and forth with me having an accurate diagnosis. So sorry that you are having these problems along with everyone on this site, but I'm glad you began this discussion. Wonder why these things are? I have lost 30 lbs in the past six months, but I think it is since I have no appetite. Does anyone else have this problem? I've also noticed that when swallowing I gulp, and it takes me longer to be able to swallow, "gulp" again. especially liquids. If anyone else has noticed a change in their appetite, or a loss of taste, it would be great to know how or when you noticed this. I just noticed this in the past year, and it's been since 2000 when symptoms first began. My Dr. has sent me to a gastroenterologist due to my loss of weight and appetite, but I've tried explaining that I believe swallowing causes pain so maybe subconsciously I've lost any will power to eat?
About the humidity factor, I live in the Ohio Valley where the humidity is very high. I can almost always tell when it's going to rain. The higher the humidity the worse my pain becomes, even in the winter with it cold.
I have also noticed how not feeling well with another illness, causes the pain to get bad. Recently I had C-Diff, a severe colon bacteria that causes severe pain in stomach, fever, diarrhea, and dehydration. Although all of this made me feel terrible the worse symptom was the pain in my throat and left ear. I think when not feeling well it affects out stress level, which automatically increases the pain. So yes, it was strange having to explain to the ER doctors that the symptom that was bothering me the most was the GPN
Maybe now if we can all put our own diaries together, then through all these similar symptoms we can share these triggers with the medical professionals that seem to be having difficulty with test to diagnose GPN.
Hope everyone is doing well!
Kat
Cheri Freytag said:
Why would my GPN only be acting up in the morning until about the middle of the day? Anyone have any ideas?
Billie said:I too can not drink carbonated or citric drinks, it for sure sets me into a HUGE bout of zapping in the throat. I am sorry your going through this and hope you get past this bout with minimal affects. Take care of you.
Hi Kat -
Was just reading your response to Cheryl. I am sorry you are not feeling well.
I was diagnosed about a year ago with GPN, first from an ENT, and confirmed by a neurologist. I suffered for a period of about 7 months with severe right-sided throat/ear pain. I was taking 1600 Neurontin a day which kept everything pretty much stable, and added accupuncture which helped quite a bit.
Last June/July I noticed the pain had vanished. Imagine the glee I felt. Well..........sorry to say it has returned as of last month (May). I just started takingone Neurontin a day (300 mg) and having accupuncture treatments about twice a week.
Not sure it is helping much. But I am experiencing the same swallowing type issues that you are relating. I feel like I want to swallow, but then when I try, it is delayed or something. Also, I am feeling stabbing pain in mu throat and ear, but then sometimes it itches like crazy.
I have not been back to the neuro because I have plenty of Neurontin left, and I'm pretty certain this is the same exact thing I had last year and there isn't much they can do. I have had a CATscan and MRI with contrast to the brain last year to rule out a tumor or whatever else (normal). I am wondering if I should get another opinion from an ENT?
Confusing, baffling condition indeed this is.
Nice to have this site, though! You all are great! (and brave) :)
Sincerely,
Kara Wilson
My neuraliga is acting up. I have neuralgia in many parts of my body. I do have GPN. My worst months are usually August when it is real hot out and September. For some reason the cold winter weather is better, but it acts up when it wants to. Lately, I have lost my taste. Things do not taste right. I feel nauseous all the time. The smell of food also gets to me. I can't stand to see anything bad. Even on T.V. I will turn the channel. Colors can make me feel this way too. I don't like that this has happened and I notice it so it is frequent.
Lately I have been going through some physical changes I have not had before. My whole stomach hurts and is in constant pain. I don't want to eat. Even going to the bathroom makes it worse. I can't even touch my stomach it hurts so bad. When I cough my left side of my stomach hurts more. I went to the doctor and they took an ultrasound and a CT and did not find anything. I almost wish they would have. I now have add my whole stomach, and not just part of it, to an attack. This has been going on for three months now.
I have trouble swallowing. It hurts and feels like something is stuck in my throat. Then the horrible hurt comes and stays. I get cramps (or whatever, the doctors don't know) that start in the middle of my back and go around to the front of my chest. This happens often. I feel like I am having a heart attack. I will get up and walk and walk around the house. I have found that taking a sip of water will help a little. In other words, a new neuralgia spot for me. This has been going on for over 2 years and came without any warning.
I have to lower my Nortriptyline. I am in the toxic level. The cut-off for it is 160 and I am at 550. I take 150 m.g. besides other drugs. I told my doctor last week that I am afraid to lower it. He want to to go down 50 mg. at once! I talked him into giving me 10 mg. so I can go down 10 mg. at a time. It is going to hurt worse and I don't want to do it. I am scared.
I have had neuralgia for 21 years. It started right after stomach hernia surgery. Immediately after. I could not walk. I would lay in bed and not move for hours. I couldn't stand. I felt they left something in my surgery area. After that, the neuralgia went to other places and the meds would change in amounts.
Does anyone know why they cannot see nerves in x-rays, CT scans, and etc. I thought by now, the medical community would have found something to see them. Why do others not understand how horrible this disease is? How the pain is 15 or higher on the charts. Doctors need more training for this disease.
I used to be all alone with my neuralgia. No one understood. No one heard of it. They thought I was crazy. Thank the Lord that there is these groups.
I pray for all of you. Even the people not in the group. I pray God willl help you, be near you, be with the doctors and nurses who take care of you, and do what is right for you.
Blessings,
Jenelle
Jenelle Zamyslowski said:
So sorry to hear you're not doing well Jenele. Are you saying that you did not have any pain, until after Hernia surgery years ago? Did they do the hernia surgery because it was causing you problems back then? You've seen the same dr. that did that surgery since or for a while after that surgery? It does sound like your dose is way high for the Nortriphyline, how did you ever get that high of dose? I know most antidepressants can cause constipation, and that's at the average dose, maybe the high dosage has caused some stomach problems? But it is odd that you felt bad and not better years ago after surgery. I've never heard of neuralgia in the stomach, unless they cut a nerve during that surgery yrs ago. Sometimes when taking pills/capsules it causes me to have heartburn, that can start in my back but I usually can tell when it comes to the chest area, that the meds went down wrong, feeling a bubble like reflux, I guess. My stomach pain that I've had in the past is mild compared to my GPN pain. It is unrelated to my GPN. I have noticed with GPN my voice is more hoarse when the pain gets bad, there's no controlling it. It even feels weaker at times. The humidity also causes this pain to increase, well here in the Ohio Valley it does. Pain Docs probably do pretty well in this part of the country, that and Allergists!
I have never understood the reason why I would wake from having a hysterectomy, with throat and lt ear pain., no pain anywhere else. This was in 2000, and the pain stayed for about 3 weeks then left for about a week or so, then came back, did this cycle for a couple of years. Now my throat pain, which includes my mouth, back of tongue, back of roof of mouth, but has extended out to left outer mouth area and face, near mouth, and is rare that I go 1 day without pain. When I first began with this pain, they told me I had chronic fatigue, and or fibromyalgia, well I didn't think so. Although my muscles ached, I think it was just from the change in my system going from being extremely active, to being in severe pain in one day. Stress I've noticed affects nerve pain, but I also think it can bring on muscle and or joint pain. Surgery is a stress on the body alone, so it is possible that if something went wrong during either of our surgeries we could have fit into that , "fibro" pain category for a time period, but you sound like yours has not gotten better. It sounds like Dr.s are coming a long way with these neuralgias, at least here in Louisville, we have more neuro groups, who do the MVD surgery, than 6 yrs ago.
I agree that the worse thing almost, is there is really no visible symptoms, nor test for diagnosis. Even if there was with GPN depending on where the nerve is twisted or having any problem, has everything to do with whether or not a surgeon can reach the area damaged. Since they cannot follow the nerve the complete length, even during surgery they can see a problem, fix that spot, but there can be problems, twisting in an area not seen easily. At least that's what I was told in 2006, and for now I not excited about going through this ever again.
KIT and hope this helps a little, just hang in there, keep up the faith, hopefully we're all praying for all of our pain.
Take Care-Kat
My neuraliga is acting up. I have neuralgia in many parts of my body. I do have GPN. My worst months are usually August when it is real hot out and September. For some reason the cold winter weather is better, but it acts up when it wants to. Lately, I have lost my taste. Things do not taste right. I feel nauseous all the time. The smell of food also gets to me. I can't stand to see anything bad. Even on T.V. I will turn the channel. Colors can make me feel this way too. I don't like that this has happened and I notice it so it is frequent.
Lately I have been going through some physical changes I have not had before. My whole stomach hurts and is in constant pain. I don't want to eat. Even going to the bathroom makes it worse. I can't even touch my stomach it hurts so bad. When I cough my left side of my stomach hurts more. I went to the doctor and they took an ultrasound and a CT and did not find anything. I almost wish they would have. I now have add my whole stomach, and not just part of it, to an attack. This has been going on for three months now.
I have trouble swallowing. It hurts and feels like something is stuck in my throat. Then the horrible hurt comes and stays. I get cramps (or whatever, the doctors don't know) that start in the middle of my back and go around to the front of my chest. This happens often. I feel like I am having a heart attack. I will get up and walk and walk around the house. I have found that taking a sip of water will help a little. In other words, a new neuralgia spot for me. This has been going on for over 2 years and came without any warning.
I have to lower my Nortriptyline. I am in the toxic level. The cut-off for it is 160 and I am at 550. I take 150 m.g. besides other drugs. I told my doctor last week that I am afraid to lower it. He want to to go down 50 mg. at once! I talked him into giving me 10 mg. so I can go down 10 mg. at a time. It is going to hurt worse and I don't want to do it. I am scared.
I have had neuralgia for 21 years. It started right after stomach hernia surgery. Immediately after. I could not walk. I would lay in bed and not move for hours. I couldn't stand. I felt they left something in my surgery area. After that, the neuralgia went to other places and the meds would change in amounts.
Does anyone know why they cannot see nerves in x-rays, CT scans, and etc. I thought by now, the medical community would have found something to see them. Why do others not understand how horrible this disease is? How the pain is 15 or higher on the charts. Doctors need more training for this disease.
I used to be all alone with my neuralgia. No one understood. No one heard of it. They thought I was crazy. Thank the Lord that there is these groups.
I pray for all of you. Even the people not in the group. I pray God willl help you, be near you, be with the doctors and nurses who take care of you, and do what is right for you.
Blessings,
Jenelle