Hi everyone, I want to share my journey with GPN over the last 18 years and I hope that it will be of help to others or at least they will think "yes that is exactly what I experienced". I will try and keep it short and to the point.
My first hint of this terribly painful, totally unknown affliction to me came one evening at home in South Africa with a sudden and violent pain in the throat. So painful I fell to the ground and just as quickly after 20 to 30 seconds it was gone. My family and I were all left astounded. This continued every 30 minutes to an hour. Little did I know this was the start of a long journey. Although my throat was the painful area I found eating and drinking soothing but talking was a problem.
The next day I managed to see my doctor who said he thought it was shingles. Off I went with tablets long forgotten now. The pain attacks continued and he sent me to a neurologist in the nearest city Port Elizabeth, who just happened to be one of the best in South Africa at the time. I had an MRI scan almost immediately which showed nothing. Eventually he put me hospital when the pain did not recede and for 4 days I was given high doses of some drug I know not what but I came out pain free but carried on taking some medication for the next 6 months. During one of the many consultations I had with him I suddenly remembered that many years,maybe 20 years before the onset of this I got a sharp stab pain in the left tonsil, just once and like a needle. It then happened again about 2 or 3 years before the main onset. When I told him this he straight away said GPN. Of course my face was blank until he explained.
I was told I would not need to take medication again but a year later it hit me again, this time constricting my throat so I had to cough to be able to breath. He put me onto Tegretol and said I was to keep taking it. After about a month it suddenly went and this is how life was. Every 6,12 or 24 months it would come back and I would step up the dose or go to my GP who would add some Gabapentin and or amitriptyline on top of the Tegrtol and it would go and more importantly I could lead a sort of normal life.
Then one day in 2007 I got double vision while driving which after a visit to a neurologist was put down to the medication. This was a one off then but in the last 3 years the double vision occurs everyday so I cannot work,drive or function normally.
In January this year I started to get small pains in my throat so I upped my medication as this normally kept it at bay. Little did I know this was the start of a serious attack, the first for 3 years and at Easter It hit my throat but more concentrated in the ear this time. Also for the first time each spasm is triggered by swallowing, talking or coughing. The coughing is caused by an annoying little tickle at the back of my throat which I suspect is being caused either by the neuralgia or one of my medications. Just had one now spasm now, So took a teaspoon of honey as I found it stops the tickle for a while.
After seeing the doctor last week he doubled my dose of gabapentin and amitriptyline and that has helped so I sit at home unable to do much due to the medication but hey the pain has retreated mostly and life is bearable. From my experience a month or so of high dose will see it gone for another year or two.
I am trying to get an appointment with a neurologist to see if they will refer me to a surgeon who does the op.
Thank you for sharing your journey with us. Its interesting that someone flagged the other day, with this condition there's a tendency not to want to go down the surgery path, but quite a few folk have had some really great outcomes.
A few folk have recently had surgery, so keep your eye out for their updates. All the best :)
Thanks for sharing your story. Where in the world are you and do you've the name of any neurosurgeons you could suggest to your neurologist - if not, if you say where you are there's people on here who can give you the names of any they know?
Has it ever been suggested to you to stay on a low dose of either gaba or Tegretol even if your GPN "goes away"? In my case that's not possible as I have constant pain not acute attacks but a friend of mine would describe her symptoms just like yours and goes through periods of "remission" in which she used to stop all medication but then it would come back. Eventually her doctor suggested a low dose constantly of Tegretol (200mg or something) and it means that when a big attack comes, it's easier to up the dosage and have it work quicker because there's already a residual base of it in her system as i'm sure you know these meds can take 6 weeks to embed properly in your system once you start taking them. Just a thought?
Good luck x
ps; I'm one of the ones Smiley was talking about that has just had an MVD, I've posted my diary in the discussions section and hope it will be useful?
Hi Granadam, I live in Hampshire UK. Thanks very much for your suggestions. I have been or should I say I am on a constant dose of Tegretol and have been for the last18 years. I take about 800mg a day and when I get the extreme pain I up the dose. I have got to a point where I can tell if it is coming back and then up my dosage. This episode started in January so I upped my Dose but obviously not enough this time and bang 2 weeks ago chronic pain. It is just getting under control now.
The one neurosurgeon I saw in 1997 said he did not want to operate so that put me off, just the way he said it. Another neurologist said it was not a good idea, I could lose the ability to swallow or talk.
I hope things are coming on well with you after your op.
I will have a look at your diary I am sure it is interesting. Thanks for your help and concern.
Phil
By the way what part of the world are you in?
granadam said:
Hi Phil,
Thanks for sharing your story. Where in the world are you and do you've the name of any neurosurgeons you could suggest to your neurologist - if not, if you say where you are there's people on here who can give you the names of any they know?
Has it ever been suggested to you to stay on a low dose of either gaba or Tegretol even if your GPN "goes away"? In my case that's not possible as I have constant pain not acute attacks but a friend of mine would describe her symptoms just like yours and goes through periods of "remission" in which she used to stop all medication but then it would come back. Eventually her doctor suggested a low dose constantly of Tegretol (200mg or something) and it means that when a big attack comes, it's easier to up the dosage and have it work quicker because there's already a residual base of it in her system as i'm sure you know these meds can take 6 weeks to embed properly in your system once you start taking them. Just a thought?
Good luck x
ps; I'm one of the ones Smiley was talking about that has just had an MVD, I've posted my diary in the discussions section and hope it will be useful?
Thanks for your story. I've had the spasms you describe from the outset of my condition - and am now 16 days post op. They have decreased but still have this and other issues that I hope will resolve in the coming weeks. Like granadam, I recommend the MVD surgery as it appears to best shot at a good resolution.
@Phil, I'm in the West Midlands although my neurosurgeon is in London. He's well worth the travelling up and down for though, and there's 2 more patients of his on here that I gave his name to. So if you're at the point where you think you want to see a specialist again (1997 was a long time ago after all, they might not know lots but know a bit more now about GPN!) then PM me and I'll give you his details for your GP to refer you to him.
I have had almost the precise set of symptoms you have described (constricted throat, severe pain that moved around a bit from ear to tonsil area to throat to tongue. I have not had to deal with them as long however - 8 years now from the first attack I can remember.
I too am at the start of trying to go to a surgical option and have scheduled an appointment with the ENT I have been seeing for the past 3 years since I obtained a correct diagnosis of GPN. It is comforting to hear of such a similar case. I work as a university lecturer and this has advanced to the point that I cannot make it through a 50 minute lecture period due to the pain and cannot think well enough to answer questions if I take any of the meds (Gabap., Amitrip., etc) so
I wish you the best and will look forward to comparing notes as we proceed through this!
Hi Phil
I appreciate you sharing your history with GPN. I was diagnosed about 10 yrs ago and 2 MVD surgeries later I still have substantial pain especially with talking.The meds make me lethargic, slow thinking, memory loss and cannot concentrate on anything complex. I take 2100mg daily of gabapentin also tramadol and nortriptyline. My muscles also ache much more than my 61 years should in my opinion. What are your meds side affects? And gabapentin dosage? Sharing your story makes me feel not along with this problem. My family says they understand but they have no idea of the daily suffering we all with GPN endure. Again thank you for sharing your story.
Ed
Yes it is nice to see that other folk are in the same boat as you but not meant in a nasty way, I don't wish it on anyone, the pain is indescribable and know one can feel what another person is feeling. I often think how lucky we are that there is medication to help. I believe back in the 50's and early 60's there was nothing for seizures. Not carbamezapine (Tegretol) anyway.All the best on your journey too.
Phil
John said:
Hi Chips,
I have had almost the precise set of symptoms you have described (constricted throat, severe pain that moved around a bit from ear to tonsil area to throat to tongue. I have not had to deal with them as long however - 8 years now from the first attack I can remember.
I too am at the start of trying to go to a surgical option and have scheduled an appointment with the ENT I have been seeing for the past 3 years since I obtained a correct diagnosis of GPN. It is comforting to hear of such a similar case. I work as a university lecturer and this has advanced to the point that I cannot make it through a 50 minute lecture period due to the pain and cannot think well enough to answer questions if I take any of the meds (Gabap., Amitrip., etc) so
I wish you the best and will look forward to comparing notes as we proceed through this!
Phil or Chips thats me. My senses are dulled at the moment too. On high doses. Going through a phase of bad pain but the meds have done the trick. Double vision and feeling very out of it better than the pain.
That's one amazing neurologist who spotted this right away. I have found the most success with benzodiazepines and duloxetine thus far and tend to keep a relatively sane state of mind with tolerable pain at steady dosage.
Doctors prefer me on carbamazepine because it is not a controlled substance and is a by the book treatment plan, but when I've tried it I didn't find as much success with an equally small dose.
Is the general experience here taht ramping up the dosage significantly increases the effectiveness of carbamazepine? I'd hate to be dizzy and delirious, as I am a programmer and it requires significant brain power to do these kinds of activities, which is tough enough as is.