I have just come out of a six week battle, new meds, new doctors, and seriously considered MVD. My friends and family recognize the pattern of onsets to my GPN attacks and feel it is allergy related. Through recent blood work I do show tree and grass allergies. Is this a coincidence, getting episodes almost every fall and spring or just the nature of the beast?
I don’t think I want to go through with MVD now that the pain seems to have waned off. Think I will wait for the next episode and then attack back with MVD. Anyone have similarities?
I was desperate, saw a neurosurgeon and scheduled the MVD for 6 weeks after the appointment. After a couple of weeks on Tegretol, the pain went way down, thought maybe I could delay surgery, but then it came roaring back after a couple of weeks. Not as bad as it can be but bad enough. On Tegretol I no longer have the "triggering" pain, just stabs. I can't eat on the right side of my mouth and I can only swallow one way, or I get a stab. Every chew of food is a stab if I let the food go too far back to the left. I can't eat fruit, cheese, anything tart. Sweet stuff is a struggle to eat. It takes me 30 minutes to eat a biscuit. My surgery is in 3 days, and I have no doubts about it. We'll see if it works!
I noticed the period of time when the furnace or the air conditioner are not running, I am out of pain. But recently we had to turn the furnace on and the pain came back. When I clean any place with a lot of dust it can irritate it. Strong chemicals can cause a reaction. Once it is irritated if I eat anything dry and crunchy that will cause pain immediately. It would be interesting to hear different peoples response as to what causes they have noticed to make their pain get started or worse.
Hello. I did go through with the MVD 2 years ago. I am so much better. Tegretol and amitriptyline at night only so I can put my face on the pillow. I also avoid the triggers (very crunchy chips, chewing gum, excessive talking, singing and cold fruit). That is what works for me. It sounds like every person is a little different. Find what works for you and don't go through with the surgery unless you are absolutely ready. I was out of work for 4 weeks. Should have taken 6. I am glad I went through with the surgery. The jabs in the back of the throat and ear are 99% better and the jabs and gnawing in the jaw are 90% better. After surgery I did have occasional burning gums and tongue but warm water takes the burning away almost instantly (didn't have this symptom until after surgery).
Overall, very pleased with my decision to have the surgery. There will be no doubt in your mind "if" the symptoms get real bad. It sounds like the meds are working for you. You are not 80 years old so the doctors will not have a problem doing surgery whenever you choose.
Best of luck!
Hello. My GPN is worse in the fall. Not so sure why. I did go through with the MVD 2 years ago. I am so much better. Tegretol and amitriptyline at night only so I can put my face on the pillow. I also avoid the triggers (very crunchy chips, chewing gum, excessive talking, singing and cold fruit). That is what works for me. It sounds like every person is a little different. Find what works for you and don't go through with the surgery unless you are absolutely ready. I was out of work for 4 weeks. Should have taken 6. I am glad I went through with the surgery. The jabs in the back of the throat and ear are 99% better and the jabs and gnawing in the jaw are 90% better. After surgery I did have occasional burning gums and tongue but warm water takes the burning away almost instantly (didn't have this symptom until after surgery).
Overall, very pleased with my decision to have the surgery. There will be no doubt in your mind "if" the symptoms get real bad. It sounds like the meds are working for you. You are not 80 years old so the doctors will not have a problem doing surgery whenever you choose.
Best of luck!
So even after the surgery you find a need to avoid the triggers (talking, fruit, dry foods) and take meds? Those luxuries trigger for me as well, but only when I am in an episode. I guess I am fortunate in that the pain is only in the tongue. At the moment, as it is waning off, I am now experiencing ice pick like jabs from the bottom right side of the tongue. This is a relief from what I had experienced Aug/Sept. At that time I was ready for surgery. I do go through several months thinking I was healed. It is such a disappointment when it returns. lol about 80 years old. You have read my mind.
It started with jabs in the same area you are describing when I would sing (good thing I'm not a good singer) and not being able to rest the left side of my head on a pillow. When my neurologist touched the base of my tongue/throat on the left it almost took my breath away. It progressed to the ear and then air conditioning or cool breeze to the face would trigger "electric shock-like" to the cheek bone area and across the jaw (mild shock). Again, don't get worked up about my progression...everyone is different. The base of the tongue and ear were the worse. Tegretol worked best and still does. Some days I need an extra dose of tegretol 200 and some days I just take it at night. Find your triggers and avoid them. Having an optimistic outlook is always a plus. I'm still hoping the nerve is healing.
Michelle
I was the optimist now I am just confused and skeptical. Lol. Your neurologist can trigger. interesting. Nothing triggers me but me.
Hi Donna
I've had what I now know was GPN mostly in my throat, (spreading behind the back of my nose and ear when attacks are particularly severe) since 2008. It was only the beginning of this year that I was finally diagnosed with GPN. I had mostly figured it out myself before then though from looking through the internet. It is quite rare here in Co Mayo Ireland, and the Dr's and Consultants I saw were going down the path of it being gastro reflux !!!
Anyway to get to your symptoms and also why it took so long for a proper diagnosis, was that my pain would come each April and disappear again around the September time progressing to the stage where the pain would cause spasm's in my throat and close off my airway making me choke (really scary the first time it happened). Allergies were checked out but came back negative.
Since the Dr's got it wrong about the diagnosis, I'm still convinced myself that grass and trees are the culprit as well as dust and I'm starting to think mould too?
The good news is that I am not taking any medication or pain killers at all. I have gone down the route of chiropractors and homeopaths as well as getting sports massages on my neck (particularly around the area where the GP nerve splits at the base of skull) as it gets incredibly locked there. Perhaps these routes might also work for you and I would definitely look into them before undertaking surgery.
Likewise though, it seems to be episodic for me too. However maybe because I know what it is this time, this episode has been much easier to bear. :-))
Gastro reflux?!! How frustrating for them to be so off. You must have been beside yourself. Thank you for sharing. My sister has been trying to get me to go to her chiropractor who also does sports massage. I have embraced homeopathic approach and was successful until the practitioner retired and moved away. It involved cleansing and supplements: Sphingolin and Serraflazyme. I haven't been taking them since he left, about three years ago. I was just taking Trileptal which was working up until this last episode.
I am still seeking an allergist tip that will point me in a direction of research and ultimately answers. For now, I am sleeping and crying alot, not my usual nature. I will be okay.
I am wondering if I have Vertigo as I have been queasy and dizzy the past few days. Stress? perhpas
I’ve tried to pin my episodes to allergies but it just doesn’t seem to work out. They come at different times of the year—spring, summer, fall, and winter—without any rhyme or reason. I did have an allergy workup a couple of years ago with some minor reaction to trees, grass, and dogs (I still have my dogs). Lots of triggers—cold, hot, smoke, dry air etc….
There are lots of allergens in the air now (October in the south east) and I've just gone into remission--go figure.
Bill what is going into remission like for you? Do you wake up one day and it is gone or does it fade? It is so strange for me. The electrifying zaps are further apart and fewer. Then I have an ice pick type pierce from below my tongue, same side, different angle. Then peace. I’mat the ice pick stage.
I've had GPN since Sept. of \2000. Began with throat, ear pain day after hysterectomy. It took until 2005 to get diagnosed. Did go to Peter Janettta for surgery, but none of the 3 I had worked. The 3rd and last MVD, was the scariest. Woke up in ICU, deaf in left ear, left side of face numb, couldn't sit up, walk, since had regressed from having full balance. To this day I too get very severe pain, esp. in cold weather and air conditioning. Also noticed pain is more severe after stress, has anyone else noticed this? I too need to be careful when eating, since before pain and now I choked on food can. My pain also is behind my eyes, mainly nose, in back of mouth, tongue. Hope everyone just stays strong. One great thing is during the ti,e of mo pain, it is like being in heaven, and we know that there are those days along with the bad!
God Bless
Dr Janetta is in Pittsburgh, right? Is there an advantage for me to go to Pittsburgh over the the chair of Neurology here in NYC at St. Luke"s Hospital? Or is the grass always greener somewhere else? Wow, reading your symptoms makes me think I am walking in the park, especially now that I am not in the midst of an episode. Your end result is worse than where I am now after 7 years of off and on. Does that make me a more likely to have a positive result after MVD or could I actually end up worse off? Who knows. This is a time when I need faith.
Hi Donna and rest of folks who are sharing their stories :-))
Thanks for replying to me Donna it has been a Godsend finding this support group!
For me the pain (I have a scale of 1 - 10 where 1 is a kind of scratchy feeling to 10 which I class as pass out pain) thankfully I have never reached 10 but have been up at 8/9 !!! Anyway what happens for me is that it seems to start with a tightness leading to a sort of hot jabbing pain on the left hand side of my throat particularly when I'm talking or swallowing which gradually increases rather like the volume control in both frequency and severity to the stage when it doesn't matter whether I'm eating, drinking or talking I'm just being 'zapped' (I like that word) every few seconds, when I'm being zapped a lot in the same spot, the muscle spasms and then the choking. When the zapping is particularly severe the pain spreads from throat through nose and out to my ear. Then after a few months it seems to slide back down the scale. And like Kim said there, we are blessed and in heaven when we have pain free days / weeks :-))
I'm absolutely convinced that stress and not being able to fully express our feelings (which we keep locked down and hidden from view, sometimes even from ourselves) are key contributors to developing GPN and the more we can do to allow ourselves to say 'no' to people and put our own feelings and needs first (instead of last) and allowing ourselves to receive from others the easier the pain becomes.
Today is Unity Day and this is a timely reminder that we are not alone/separate from the rest of humanity and the more we do to include (and by that I mean BELIEVING with the heart rather than the head that we have a God given right to be seen and heard by others), rather than what we tend to do, exclude ourselves the more blessings we will receive.
love and light to you all
Jackie
Jackie when you discribe how the pain starts, builds and the zapping, I fully understand that. I am very fortunate that my pain is only in my throat. Mine is on the right side of my throat. I have had mine now for about 26 years. It comes and goes. My episodes normally only last for a couple weeks then subside. When I was first dianosed I was put on Tegretol but it affected my memory enough that I quite taking it and never tried it again. Something I find odd is when I first go to bed I can only lie on my right side or I get instant pain if I lie on the left side. You would think with it on the right side it would make it worse. I never talk on a telephone on the right side. I hardly ever make phone calls anymore. Just not worth the pain. Which makes using Skype on the computer much better for talking with family.
I live only about 1/2 hour from Pittsburgh. I should look into seeing Dr. Janetta if it gets worse. But it is not bad enough for surgery at this time. But finding this site has made me realize just how much worse it is for some people. Something that helped me was taking Juice Plus. I still have the pain but not to the same degree. I don't sell it. But mentioned it because the 2 different times I tried quit taking it the pain was worse and pretty quickly. I have been taking it now for a number of years. It is expensive but worth it for me. My mother had neuralgia in her face and the Juice Plus helped her also. I started taking it for health benefits and was suprised when it helped with my neuralgia.
Has anyone else found something that helped them? Even if it sounds silly please share with us. You never know who you may help.
Arlene
To Donna's question:
The pain/attacks fade gradually. The attacks get less intense and I keep my tegretol at the same level (800 to 1000mg per day) for a while. At some point I can stop taking it completely by reducing to dose little at a time. I've gone as long as a year in remission. Sometimes it only last a couple weeks or months. Usually, when it comes back it's really bad--the ice pick description you have given. I've had this since 1985--and I'm convinced that it was the result of a really bad case of influenza.
My pain is always on the left but can be in different locations--back of tonsils, in the ear, down the throat and takes on many forms. Trying to describe this to my friends and colleagues is difficult. They look at me with that deer-in-the-headlight gaze like they're thinking--this guy's crazy--
Donna said:
Bill what is going into remission like for you? Do you wake up one day and it is gone or does it fade? It is so strange for me. The electrifying zaps are further apart and fewer. Then I have an ice pick type pierce from below my tongue, same side, different angle. Then peace. I'mat the ice pick stage.
@ Bill…your above entry to Donna could have been me talking. I had exactly the same pain on my left side in the same way. It would come and go the same also. They found 2 large vessels laying on my 9th cranial nerve.
I just had what Laura had done. Living without gpn for now! I could tell in the recovery room when I wiggled my tongue the pain was gone. Then I had to go through the recovery process, still ongoing… not for everyone, but worth it for me…
So happy to hear you are doing well. Thank you for the update. My pain was waning, but with Hurricane Sandy, the change in temperature, and being without electric for seven days, it is peaking again. Not the "normal" pattern for me. When it wanes, it goes, and I have a few months respite, in the past anyway. I have scheduled MVD with Dr. Goodman at St. Lukes, in NYC. Just a few more weeks. Very scared of the recovery process, but looking forward to pushing through!