Note I wrote this to be able to help others identify with GPN. I have suffered this off and on for 13/14yrs. This is what I have learned…
TRIGGERS
After 13+yrs (diagnosed with GPN 3yrs ago) I notice I am having symptoms once a year and around the same time – when it starts getting cold. I live in Canada which means around November/December the butterflies start. I call them butterflies as there is a light fluttering feeling beginning bottom to half way up left side of neck/throat. I will jump on meds immediately hoping to quiet the calm before the storm. If the storm comes then the butterflies turn into tremors/lighting bolts travelling up the throat into tongue – then the gagging/throat seizures begin.
THE BEGINNING
Everything I read states there is no known cause for what triggers the development of GPN. Yes, there is the fact that it’s an artery rubbing/aggravating the glossopharyngeal nerve causing the symptoms we suffer, but what caused the nerve to rub it in the first place? I asked in an earlier post if anyone with GPN has had any type of neck injury in their life – and *Yes, there seems to be a coincidence with some responders. I have had 3 whiplash traumas caused by car accidents many years ago – the last one being at least 10yrs before GPN started. Though the initial whiplash pain was on the right side of the neck, years later the GPN affects the left side of my throat/tongue. The first time I experienced a GPN lightening bolt causing a seizure was drinking cold milk. BUT… a few hours before this I had sprayed my car with RAID as there were 7 wolf spiders nesting in the car. I had put some old farm equipment in the back which had been there overnight not realizing there were spiders nestled inside. After spraying (a full can), I then travelled 2hrs home wearing shorts and sitting on cloth seats damp from the RAID. I started throat seizures a few hours later. I didn’t stop violently seizing for many weeks and having them many times throughout the day. I called poison control to ask if the RAID would be causing this and they said there was not enough pesticide chemicals to cause human suffering. I never thought of it again but these many years later I keep going back to this moment when my life changed. Think about it… I sat on damp seats from the RAID (plus the fumes in the car from a full can being sprayed) for 2hrs wearing shorts. Our skin in porous. What does RAID do to spiders???.. it CHOKES them!!! Coincidence??
My then physician kept trying to tell me this was all in my head and I needed therapy. I would frantically web-search for similar symptoms but was searching the wrong keywords. When I finally searched ‘tongue spasms’ (not neck/throat spasms) I found GPN which hit every nail on the head compared to what I suffered. I had a new physician by this time who listened to me which led to neurology treatment.
SYMPTOMS
The first sensation I have (warning signs of what’s coming) is a light butterfly/fluttering in the lower to mid left side of throat. This can advance fairly quickly to tremors/lightening/shock sensations traveling up the throat to back of tongue. In the severe stages it causes throat/tongue seizures and gagging for up to 1-2min and many in a day. I find I have a 20min window after a seizure where everything is settled and I feel ‘normal’ so I take advantage of this time to eat something more solid than liquids – or – I just cry…
CAUSES
Eating/Chewing (I avoid solid foods and go to an all liquid diet)
Swallowing
Drinking cold beverages (I drink all room temperature juices/water/shakes)
Talking
Laughing
Burping
Hiccuping
Coughing
Sneezing
Clenching throat in any way
Stretching
Leaning over (I squat down)
Toothpaste (Once this caused a massive seizure that lasted many minutes – I now brush with baking soda only)
Bowel movements – we tend to clench to push. I learned to breathe and use lower muscles through this. Putting knees together with feet spread apart helps as well.
RELIEF
Taro-Carbamazepine (up to 800mg/day). I don’t find the meds stop the symptoms – only dulls the experience of the pain.
Liquid diet – I avoid solids due to chewing causing traumas. I drink all liquids at room temperature as cold traumatizes the area causing seizures. I drink lots of water, prune juice (keeps bowels moving), fruit & veggie shakes, soup. When I can I eat eggs & fish (not breaded) to get some solids in.
I stop all vitamins, sugars & caffeine as they are hyper substances.
Avoid colds if possible. (I can’t imagine having a cold & GPN traumas!!)
Lying on right side only. The artery must shift away from the nerve in this position.
During the seizure/retching stage I lean over and salivate letting the saliva run from nose & mouth into the sink or waste basket. I try not to cough and allow the pain to just be as coughing can make the throat raw (especially when seizing a lot in one day). I focus on taking breath in as much as I can to make sure I’m getting air as the gagging causes severe retching where a lot of air is being pushed out and not a lot of air is going in.
Being quiet… VERY quiet…
When does the aggravation to the nerve stop? Nothing stops it – it beats to its own rhythm meaning… it’s a matter of time… and waiting… and patience… and quiet… This may take from a few days to several weeks. Each time GPN aggravates me, the timing is different.
Bi. I feel must respond with some positive thoughts. Generally I am just too stubborn to yield to negative energy. So here goes. I actually feel trigem has given me the gift of learning about pain and stress and myself .My pain is all left sided…3 hears now’ i have had had several.treatment witb no results…including mvd. Pain 24/7. Pain a bitch…cold a bitch. Do I have increased mindfulness to befriending the pain and dedicated to tai chi, writing, the arts & spirituality. Basically the pain is not going away but these practices help exasperation of the pain. Frankly also not working…waiting disability. Choosing to live on less $ but at least I can pace myself…and I have a life… Hope this helps. Peace. Christine. .
Hi thanks for such an in-depth idea of GPN. You describe exactly my symptoms and triggers right down to lying on the right side at night. I have agonized over all the things that could be causing it but have come to the conclusion there is nothing you can do about it when the period of pain strikes you just have to up the meds a bit and hold on for dear life. I have learnt to bear the pain to a certain extent but for six months or so it is hell. Then one morning I will wake up and it is gone for the next year, eighteen months, two years, but must still take a good dose of the meds or it has a tendency to sneak back on you and once it starts takes months to get under control again. My pain in my throat started as I took my first sip of cold beer one day 20 years ago. The pain knocked me down. My wife thought I had a heart attack. Each time it comes back it seems to hit a new area, throat, then next time choking then ear, then teeth then throat again but this time could not swallow without triggering it. I used to sit with a mug and spit in it to avoid swallowing. I get burning lips mouth and so I could go on and on.
I have always been on carbamazepine (tegretol). My neurologist put me on 200mg through the day when I felt I needed it but I found my best dose was 200mg every four hours which gives me an even dose of 1,200mg per day. Some years ago I stated getting double blurred vision at least twice a day. He said it was because as you get older the brain can’t override the meds as well as it used to so it will just get worse. I am afraid all those out there who think they can solve this affliction you can’t you just have to accept it and think like I do, I am a lot better off than a lot of people out there so just get on with life as best I can. I have had it since I was forty five, I am now sixty five. As an after thought my neurologist advised me against surgery.
Thanks for sharing your story, I find it quite interesting. Insecticides are very potent chemicals, and I simply do not believe we have been given the whole story on how toxic they are. What year was this? ingredients in Raid apparently changed over the years. I’d like to check this out further.
Have you tried a benzodiazepine in either a topical or systemic form? When I had burning throat issues (along with cramps in throat), I found a topical swab of clonazepam was very helpful. I also have good luck with diazepam for pain relief (although my symptoms sound quite different).
I did not end up doing the surgery as the pain dissolved as it usually does. This past winter was the longest and worst I have had the nerve aggravated. I read a lot about the surgery and spoke to a neurosurgeon. I was booked to have the MVD but decided that I’d rather live with the come & go pain than be left with a Life Change I may regret.
I wonder how you are all doing now. I believe I have Atypical Glossopharyngeal (no diagnosis; 3.5 months of constant deep left-sided pain) and I am quite upset at the prospect that this will get worse. How has everyone fared with their surgery for GPN, and did anyone start with an atypical form (steady, deep pain for months)? Wishing you all a very good day.
My pain wasn’t constant, or dull. It started as a short, sharp sting, like a stab on the left tonsil. It didn’t recur for months, then it just got worse and worse.
At some point it became a triggered event, like an electric spasm that lasted for a few minutes to 10 or more minutes.
I had the MVD surgery 1wk ago! Thru an MRI camera the cause was found and Teflon bumpers are protecting the area – the nerve did not get snipped! Though there is a lot of healing from the surgery to be done now – I feel the 15yrs of suffering throat seizures are finally gone!!
The surgical team - Dr Andrew Parrent @ University Hospital in London ON, Canada - has done MVD on GPN to 1 other person and myself both with great success!! I am so *Fortunate to have found this team thru years of research – 15 yrs of suffering and discovering the name of the trauma only 4yrs ago – then only 1 yr ago finding out there was a surgeon here who knew about GPN!!! One family practitioner 14yrs ago told me I was psychotic and I never threw in the towel nor did I ever go to him again!
SoGrateful to have found connections to this surgeon through this chat site livingwithfacialpain.org
ThankYou
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Hi Cairenn,
I have not been on in quite a while and have been having a wee look around today. How are you now after you MVD? You were so lucky to have found a good team!!
I am in th UK and had MVD in 2014 which has not worked and i now possible have VagalGlossopharyneal, which makes me really sad and I am back on the same doze of Oxcarbazepine I was on before MVD (1850mg)
I had similar experiences re doctors telling me that is was in my head and to try and relax, i was asked if I had googled things so I could go the the hospital, I still cannot beleive it!! No one unless they have suffered this awful disease will understand.
I hope you are doing okay and if you get a minute you could maybe drop me a line.
I am also trying to find out if anyone else in the UK is suffering, I live in the Scottish Borders.
Hi Andy –
I’m so sorry to hear of your suffering!!! As we know GPN is a horrific pain to experience. *Fortunately… I have had NO SEIZURES OR PAIN since I woke from MVD surgery – which was January 10th this year. I do have after effects (which are waaaaay less bothersome than the GPN trauma)… my uvula leans to my right instead of vertical which I researched and is cause from a weakness to the 9th or 10th cranial (glossophyrengial is 9th). My left side of throat (trauma nerve side) is paralyzed – can’t feel texture or temperature of what I’m swallowing – but I believe this happened a couple years pre-surgery from the intensity of 15yrs of trauma. Left side of head is still numb to touch (about the size of my hand) from the incision. I weaned off anti-seizures meds a few weeks after surgery and take no meds to this day. Six weeks post-surgery I developed a cough – sometimes coughing to points of concern. The one other gentleman who had the same procedure as me (2yrs prior) by same surgeon said he had a concerning cough for about 6months post before it backed away. He said it comes and goes for him still but nothing of concern in comparison to GPN trauma. We both still can’t sing or excel our voices without the sound cutting out. Still… both of us have no traumatic seizures and that’s all that matters!!!
I would agree that we had the best surgical team!! We are the only 2 patients the surgeon has performed MVD for GPN on and we have identical post symptoms. I was fortunate to discover Dr Parrent (University Hospital London ON – 45min away from where I live in Stratford ON) through his first patient posting his story on here. I felt like you… that no one in my area knew anything about this to make any recommendations. I did all my own research to find both the trauma and the surgery and that someone local to me knew about this!! I feel so *Blessed…