Hi all, I’m new here & just been diagnosed with gpn after spending the good part of a year with excruciating pain in the right side of my throat. After being told it was tonsils for months, I collapsed with the pain 2 wks ago & spent a week in hospital. Finally a specialist ENT diagnosed gpn & prescribed gabepenthin. Was told I would see results in 3-4 days - 2 weeks on and I feel slight relief. Specialist thinking of putting me on stronger meds but I’d like to know other people’s experience of meds to treat this. I’m 31 & would like to get pregnant but surely that’s not possible now with all these drugs? Thanks!!!
Hey Granadam and welcome to the board.
I'm really sorry to hear that you've been diagnosed with this, it's an awful awful condition. There are quite a lot of options for meds, and a lot of us work our way through a lot of them before we find something, ( if we find something!)
I'm glad you've found some measure of relief with the gaba, it was a very bad drug for me, but everyone has a different experience.I totally understand what you're saying about having a family, I'm rapidly approaching 30 and taking tegretol in fairly high doses and have looked at this in every way imaginable, for some people they go cold turkey, others reduce their meds or change their regimne entirely, but it's different for everyone, and finding a way of managing the condition first will have to be your priority, because its not a pain you want to be in during a pregnancy,or while trying to concieve.
For me tegretol retard works, for others I've heard that amytriptaline helps, then others use opiates. It can be a very difficult thing to manage.
I wish I could give you answers but there's a lot of information between everyone on the board, and a lot of the guys can give you info on the surgical options too.
All I can say is that I hope you find some relief soon, and please feel free to get in touch any time
Much love
Gracie x x x
Thanks Gracie, it really is great (well, not great that we have it, but you know what I mean!) to hear about others going through the same thing, I'm so glad I came across this website even if most are in the US - although I see you are in Scotland! I'm near Birmingham!
Thanks for your message, I may have spoke to soon about it "working" as it's a bad pain day today! How long have you had GPN?
Amanda
Grace Mackay said:
Hey Granadam and welcome to the board.
I'm really sorry to hear that you've been diagnosed with this, it's an awful awful condition. There are quite a lot of options for meds, and a lot of us work our way through a lot of them before we find something, ( if we find something!)
I'm glad you've found some measure of relief with the gaba, it was a very bad drug for me, but everyone has a different experience.I totally understand what you're saying about having a family, I'm rapidly approaching 30 and taking tegretol in fairly high doses and have looked at this in every way imaginable, for some people they go cold turkey, others reduce their meds or change their regimne entirely, but it's different for everyone, and finding a way of managing the condition first will have to be your priority, because its not a pain you want to be in during a pregnancy,or while trying to concieve.
For me tegretol retard works, for others I've heard that amytriptaline helps, then others use opiates. It can be a very difficult thing to manage.
I wish I could give you answers but there's a lot of information between everyone on the board, and a lot of the guys can give you info on the surgical options too.
All I can say is that I hope you find some relief soon, and please feel free to get in touch any time
Much love
Gracie x x x
Aw hun, sorry you're having a bad day, for me Gaba gave me extra pain, but I never realised that at the time, hindsight eh? Yeah, most of the other folks with this seem to be overseas, then again, its probably just a population thing since its so damned rare. But boards like these can be a real lifeline when you have something like this, it was Braintalk that was my saving grace in the early days.
For me, 23rd Sept was my 4th Spazziversery. Not one for celebrating I have to say :( Ach well, nature of the beast I suppose.
Hope the pain eases up soon though hun, take care.
Much love
No wonder you know so much about it Grace! I am in the dark still, seeing neurologist next week who will send me for an MRI I presume, but I just don't know what their plan of action is other than the gaba and some other strong one (starts with a T) that they said I wouldn't be able to get pregnant on.
Depressing!
Tegretol. That's what I'm on, and it's really not clever to get pregnant taking it, although many folk do and are ok, but knowing the risks its not something I'm willing to gamble on, I've seen a gynae about it and gone through the options, but still doesn't make things much easier
The fertility aspect of this is HUGE and it's not addressed properly anywhere. I've written and blogged about it fairly extensively in the past, ( before seeing the gynae, I must add) and if at any point you want to read my take on it all I'll happily link you into it, but right now, given you're only just diagnosed there's probably a whole lot more other stuff that you want to absorb and find out about it, it's a big big adjustment, without reading my pissing and whining in that regard. But if you want any info on that or my input on it just shout and I will clue you in on my understanding of the whole sorry situation we find ourselves in.
Much love
x x x
Hit me with it, I'm in a "really need to know" phase and can't seem to find many answers. I really want to have another baby (have a 3 yr old) and am kicking myself I didn't do it sooner now all of this has happened. Been so upset, don't know what to do with myself!!
Thank you sooo much for all your words of wisdom and kindness, you've been great!
Amanda
Hey hun,
Sorry for the late reply, been playing up a bit the last couple of days and been really busy over the weekend getting organised for a friends wedding later this week. I dunno about wisdom, but I will lay it out as I see it from years worth of fairly depressing reading!
Well yikes, where to start?
Ok, well I will link you into my last real rave about it and you can see what you make of that for starters....
Its at: http://www.livingwithtn.org/profiles/blogs/the-guilt-of-neuralgia
Now this was written before I went to see the doctor, who when I asked her for antidepressants and explained my reasoning for it sent me to the gynae.
Now while tegretol isn't as bad as sodium valporate ( which is a nasty F**cking drug if you'll pardon my french) but it pretty much comes in as a close second. Tegretol comes with its own syndrome, Foetal Carbamazapine Syndrome, now with all these drugs, there are risks, the newer ones the risks are less so, the likes of lyrica, but the higher the doses you take, the worse the risks with any of them, and if you take more than one anti-epilieptic ( polytherapy) the risks get much higher again.
You're looking at, the likes of cleft lip, palette, club foot, malformed finger nails, genito urinary probs in boys, malformed, hips, kidneys and heart valve issues, not to mention additional facial abnormalities, including almond eyes * as a characteristic and mental retardation. Like I say, the higher the doses the worse the risks, but you could potentially be looking at any or all of these problems.
I say you, I mean we :(
Anyway, the problem with this statistically wise, is that epileptic women, who are the ones that all the stats come from already have a higher instance of miscarriage, still birth and all of the other stuff I mentioned anyway, so getting any real data for those of us who aren't affected by epilepsy is well......... not terribly easy.
Plently women take tegretol and go on to have healthy children, and they will LOAD you up with folic acid in advance, ( something like 10 times the normal amount or something crazy cause the tegs metabolise it differently) But high levels of folic or otherwise, it would still be viewed as a high risk pregnancy and monitored a lot more closely throughout.
Anyway, when I was at the doc I reckoned she would suggest lyrica/pregabilin which doesn't agree with me either, which has a lower risk rate, however it was amytriptaline she suggested were I to go ahead and try for a family anyway.
To my mind, what I was kind of harbouring in the background was to go cold turkey on the tegs and "smoke" to deal with the pain, but was informed that the "smoke" is also associated with defects, ( irrespective of us all knowing tobacco is bad and lowers birth rate etc, it sure as hell can't be any worse than the tegs from what I've read, anyway I'm not a doctor, and that's a hellish irresponsible thing to say on an open forum, but it was something I contemplated, before she put a spanner in those works too)
So it is possible, it can work, but then again, it's a hell of a risk, and they would likely want you off the tegretol for at least the first trimester during the most formative part of the pregnancy, however what I will also say is that it does stay in your system for a good long time ( from what I gather) so it would be releasing into your system anyway if you found out that you were pregnant while taking it and stopped immediatley, how long for I don't know off the top of my head ( another problem of the tegretol is it screws your memory!)
So that, in a nut shell is the basis of the crap we have to deal with, I;m sorry with it being so brutal, it blows rather badly, but however crap it is, it doesn't mean that you can't go on and have more, it's just if you want to go cold turkey, risk brain surgery for it, or risk trying on the meds, which are the main choices as I see them.
Anyway much love, and will speak to you soon.
Gracie x x x