Hey folks,
I’ve had a nice quiet day in the house, not done a whole lot to report about but I’ve had the most horrendous attack this afternoon, and funnily enough on my less active side.
Anyway when I have a normal attack, other than the usual twangs, I can get through it alright the usual, breath holding, bad I know and sometimes holding some hot tea in my throat eases it a bit, that and necking enough fast acting tegretol to soften me up.
But the attack I had was one of the worst I’ve had since I started the meds 3 years ago full force, and I’ve had the impending pang panic since. The usual ones are bad enough, and tough enough to get through, but these full force attacks are a different beast entitrely, if a usual attack is an 8, this one was a 32, sheesh!
Now like the rest us of I’ve tried all of the options and potions and concoctions, and rubs and what not, granted most of them when we thought my problem was trigeminal, and I was having the atypical pain in my face too, but now that’s all gone, but are there any tips that other glossos can give to stave off an attack in full pelt? Cause I’m fed up just now, and hurting. Anyone got any suggestions short of scalpels cause I’m waiting for that right now too!!! I’ve never really had the chance to ask others with gn before so ideas or suggestions greatfully received
Much love and pain free wishes to all
Gracie
hello grace i have no answes because i have just been diagnosed… in early sept. . i have had years of tounge and throat pain… shingles? had my tonsils out 3 years ago. tons of dental work… now left with burning of right mouth, throat,gums… sometimes when it goes to he ear or eye or larynx those days are unforgettable… cant talk at all or hoarse, cant stand due to nausea, cant see straight due to pain… i just started on meds… no real improvment. somedays i think this is going to be the day i know i will start to head uphill. then later in the day or if i push to hard or if it is a very high stress day … forget it! i have already talked to a surgeon he states that meds rarely work for this and that the scalpal is the only fix… straight from a surgeons mouth was not to trusting . so iam trying the meds and all the side effects!!! the scalpal is looking really good… i hope i hear some more stories and informatoiin from anyone who would like to share…KATHLEEN
Hey Kathleen
Someone else on here mentioned shingles to me, I didn’t know that you could get shingles in the throat, much less for it to cause GPN, I couldn’t find any documentation on it on the web either, I had my tonsils out when I was little, and never had any problems with them since, now they say that my GPN is caused by eagles syndrome and the tonsils need to come out again! I had a lot of discomfort and burning and clicking in my throat for a long time though, but wierdly never connected it to the neuralgia for the first couple of years.
Yeah, there’s no doubt there are some good days and some bad, and believe me when I say I’ve been through the meds, My first 6 weeks after the neuralgia started I was off work, not because of the pain, but because of the side effects, the first week there was the uncontrollable laughter, but inability to move, the bouncing off walls, numbness, tingling, the inability to speak, or think, or function, the face pain, the visual problems, the constipation, the nausea, runs, vomiting, the depression, the come downs when stopping one to start another and ending up suicidal, they have had their bad points, but there have been benefits from them too. Pain relief being the main one, but after the crazy cocktails, and various combo’s, the only one that’s been worth the bother for me though was the tegretol.
So what surgery were you discussing with the surgeon, was it the MVD you were looking at? Whether you stick with the meds or go with the surgery, either way I wish you the best with it, and hope you get some relief soon, I know there are folk on the board who’ve had numerous procedures so hopefully there’ll be some words of wisdom thrown into the mix.
Much love
Gracie x x x
Hi Gracie
I have had gn for 4 years now. Fortunately I have been in remission for almost 2 years. I have the gn with syncope where I passed out or went into cardiac arrest. I got the pain in my throat. If that’s where you get it, try the throat spray that numbs your throat, it’s sold in the drug store for sore throats. It does help a little bit and every little bit helps.
Good luck Gracie
Carrie
Hey Carrie,
You are so right that every little helps! But no I don’t tend to feel it in my throat, I have, but the tegretol takes care of that side of things, strangely enough, when I take the tegs, I don’t feel it there at all, the real pain I get is deep in my ears and that’s where I find the problem. It is so all encompassing and there’s not a damn thing I can do to deal with it when it’s bad, I mean I can’t even breath when it’s like that so I suppose there’s not much chance I’d be able to follow any suggestions anyway!
Can I ask how you cope with the syncope? It’s a scary thing to have going on, did it start with the first attack, or was that a later progression? ( I believe quite often the passing out can come later into having the disease/problem,or whatever you want to call it!)
Anyway thank you so much for your response, and really good to see you on the board.
Much love
Gracie x x x
Carrie Hughes said:
Hi Gracie
I have had gn for 4 years now. Fortunately I have been in remission for almost 2 years. I have the gn with syncope where I passed out or went into cardiac arrest. I got the pain in my throat. If that's where you get it, try the throat spray that numbs your throat, it's sold in the drug store for sore throats. It does help a little bit and every little bit helps.
Good luck Gracie
Carrie
Does a topical liquid Lido-cane help…It used to stop my attacks instantly… I had to carry the bottles around with me religiously when at its worst…
love lidocain carry it always…addicted!
The only topicals I ever used were for the ATN when the drugs were giving me that, I’ve never had anything other than pills pills pills otherwise, but my pain is deep in my ears rather than my throat, although the last few days I’ve been having some rather unpleasant throat spasms, not the whole throat, but like lines of spasms if that makes sense?,
But right now I’d take the wierd throaty stuff any day rather than the sharp stuff in my ears.Maybe lidocaine would do the job? It;s funny I’ve done all this reading about lido injections, and coke and ket, and folk have mentioned throat sprays, but did it ever occur to me to see about lido ear drops? Nope!
Crazy stuff!!!
Hmmm, had some interesting reading this afternoon, on surgery and getting rid of the ear pain, will post about it later and see what you all think
Thanks and much love
Gracie
i have used that lidocaine before too. good suggestion. but yah i had one today too! must be the season! i fully believe that!
I cant imagine that pain in my ear… when I have bad flare ups… if feels like some one is sticking an electrified dagger into my throat… I can go months without feeling any pain at all… but then when it flares up, mostly in the spring and fall, I cant keep if from happening, but I can seem to control how intense it can get… at first sign of it coming on, that’s when I dose myself with vitamin B, get extra sleep and try relax…Before i knew this, my episodes would get debilitating. Now I basically manage my pain when needed and go on higher doses of Moron-tin. Only problem with the stuff is I become really dum…and Numb… and the worst part is coming down off the stuff.
Unfortunately the ears is my downfall, it’s a nightmare, 3 years just gone and not a remission yet, just worse days and better days, and lots of tegretol retard, ( does exactly what it says on the tin!!!) Oh I did the gabapentin too, and never a truer word about coming off it, I ended up suicidal for weeks, absolutely horrendous, and that’s when I was stopping it, I had side effects in abundance when I was taking it too, most notably pain in my face, how’s that for irony!!!
I tried vitamin B tabs for a while, and I didn’t feel any benefit from them, but I’ve spoken to a few TNers who’ve had benefit, but more so from the shots if I recall correctly. I remember speaking about this a while ago and if I remember right I was advised that if I was to take it there would be essentially no theraputic value unless I was taking it at almost toxic levels,like 4000mg or something crazy the reason being is because most people are almost completely deficient, and due to the way the anticonvulsants metabolise other meds in your system, like the pill where you need to have oober doses it, unless you were taking an awful lot it would be negligible what positive impact it would have to you.
I don’t know how much truth is in that, but just what was said to me at the time, ( I think it was the acupuncturist, so I don’t know )but hey if it works for you then all the better!!!
I just wish that I could find a way to keep it controlled without the tegretol. :o( Maybe one day eh?!
Much love
Gracie x x x
at justin-do you just up the dose of meds when you have a flare up? does that help?
Hey, for me when it came to the gaba/neurontin, I had been treating it like the tegs, if I had a bad flare I was taking more, but I didn’t realise that it was having such a bad effect on me when I did that, Laterly I was having blanks and ended up at the doctor when I found out that I had attacked my friend with a 10 cast steel kitchen knife in my hand, ( I didn’t try to stab him, and it’s a long story, but I was just battering him around the head completely unaware that I had a blade in my hand)
That’s a long long yarn that I will probably share when I have a chance to write it all up ( or find my previous posts about it on other boards and paste it over) but I found that with any change, even small amounts to my gaba dose, I was having blanks and serious, emotional repercussions from it, as long as I was on a constant dose I had been coping mostly alright, but the wobbles came from any change to it. That was just my experience, but for me it was a scary scary scary drug.
Chrisa Alberts said:
at justin-do you just up the dose of meds when you have a flare up? does that help?
Grace Mackay said:
Hey, for me when it came to the gaba/neurontin, I had been treating it like the tegs, if I had a bad flare I was taking more, but I didn't realise that it was having such a bad effect on me when I did that, Laterly I was having blanks and ended up at the doctor when I found out that I had attacked my friend with a 10 cast steel kitchen knife in my hand, ( I didn't try to stab him, and it's a long story, but I was just battering him around the head completely unaware that I had a blade in my hand)
That's a long long yarn that I will probably share when I have a chance to write it all up ( or find my previous posts about it on other boards and paste it over) but I found that with any change, even small amounts to my gaba dose, I was having blanks and serious, emotional repercussions from it, as long as I was on a constant dose I had been coping mostly alright, but the wobbles came from any change to it. That was just my experience, but for me it was a scary scary scary drug.
Chrisa Alberts said:at justin-do you just up the dose of meds when you have a flare up? does that help?
how do you know how much of an increase to take in your meds? everytime i go on any sort of increase or decrease it affects my body greatly and feels like shit.
Hey Chrisa,
I’m not sure about Justin, but for me, I’ve discovered I can change my tegretol and tegretol retard doses without it affecting me too badly, as long as I don’t drop the levels too low because then I suffer for it ( if I take too much of the fast acting stuff it knocks me on my ass, steals my speech and leaves me crosseyed so for a bad attack I’ll have a couple of hundred mg of the fast acters, that’s normally okay, when I take 300mg of fast acting it affects me then as a single dose that hits me then)
I learned my lesson when taking the gaba and lyrica, any change to those and I was psycho!
Over time though I’ve got to know what works and what doesn’t for me but I seem to have a good tolerance for the tegs.
I take 600mg of the slow stuff twice daily plus any fast action stuff required, I had got back down to 400mg twice daily for a while and that’s just not enough, for a long timeI was taking 800mg twice daily with other stuff thrown in on top but I think it’s about being aware of what your system can take, and not pushing your luck.
Gracie x x x
Chrisa Alberts said:
Grace Mackay said:Hey, for me when it came to the gaba/neurontin, I had been treating it like the tegs, if I had a bad flare I was taking more, but I didn't realise that it was having such a bad effect on me when I did that, Laterly I was having blanks and ended up at the doctor when I found out that I had attacked my friend with a 10 cast steel kitchen knife in my hand, ( I didn't try to stab him, and it's a long story, but I was just battering him around the head completely unaware that I had a blade in my hand)
That's a long long yarn that I will probably share when I have a chance to write it all up ( or find my previous posts about it on other boards and paste it over) but I found that with any change, even small amounts to my gaba dose, I was having blanks and serious, emotional repercussions from it, as long as I was on a constant dose I had been coping mostly alright, but the wobbles came from any change to it. That was just my experience, but for me it was a scary scary scary drug.
Chrisa Alberts said:at justin-do you just up the dose of meds when you have a flare up? does that help?
how do you know how much of an increase to take in your meds? everytime i go on any sort of increase or decrease it affects my body greatly and feels like shit.
I do find it interesting that stress does explode the symptoms… does anyone else find this to be true for them?
I also find that gaba makes me more aggressive and see double which scares me. have i found the meds to help… somedays i think this is the day i feel good but then it strikes again. how does anyone deal with this for such long periods of time? just these last 11 months and a few episodes over the years that i was not diagnosed are about to bput me to my braking point …
kathleencord said:
I also find that gaba makes me more aggressive and see double which scares me. have i found the meds to help... somedays i think this is the day i feel good but then it strikes again. how does anyone deal with this for such long periods of time? just these last 11 months and a few episodes over the years that i was not diagnosed are about to bput me to my braking point ...
i wish i could tell you more :( i was having all the things at once when i was first diagnosed and it was terrible! acceptance was really the hardest part. will it ever end? how do you function everyday? i am a big get up and move on person so i hated it because you couldnt just block out the pain and get on with the day-there were so many symptoms that went on it stopped you whether you wanted it to or not. i think keeping your stress levels down and i say a LOT of sleep seems to work.
i had a doctor tell me to take tonic water a glass of it twice a day. it has to be tonic water cause their is Quinine it which is often known to be medicinal. he said it worked for him. i dont know because i dont know if i was just in remission at the time? but talking to people like on here you know? and once you get to know the illness and how to cope and when it will come and go you will be a little more at ease. xoxoxoxo
I’ve never heard of taking tonic water for it!!! But if it works, then I’ll not knock anything. How long have your remissions been ladies? I’ve never had one, and I keep holding out for it to happen, just settled days, less settled days and then the downright bad ones, then there’s the age old question of if you get it under good control from the drugs, and you get pain free, is it the drugs or remission, and do you stop taking them or maintain them in your system.
Mmmm. so many questions.x x x
Grace Mackay said:
I've never heard of taking tonic water for it!!! But if it works, then I'll not knock anything. How long have your remissions been ladies? I've never had one, and I keep holding out for it to happen, just settled days, less settled days and then the downright bad ones, then there's the age old question of if you get it under good control from the drugs, and you get pain free, is it the drugs or remission, and do you stop taking them or maintain them in your system.
Mmmm. so many questions.x x x
i wont ever stop taking the drugs! LOL i am so afraid to go back to how i was everyday! i am having a cycle right now. seems like it comes in cycles for me and lasts for a few weeks. I am too afraid to stop taking the meds and have it be how it was. I wouldnt even be able to drive. I went to the orthopedic doctor just yesterday to make sure my ribs and spine were ok cause i have had so many falls from being off balance. i think you have to get your pain meds just right. that is my opinion. right now i am pretty good but i dont know if i am being accustomed to the levels and need them adjusted so i am going to see my neuro next week to see what to do. i believe it is a cycle because it seems for my the fall/winter weather does it. but a lot of it as time goes on if knowing your own body, or that is what i think. how long between you having the very bad ones and the ok ones? what exactly do you take and the strength?