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…
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.
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.
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…
- Eating/Chewing (I avoid solid foods and go to an all liquid diet)
- Drinking cold beverages (I drink all room temperature juices/water/shakes)
- Clenching throat in any way
- 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.
- 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.