Hello All! You’re proabably surprised to see this topic since most people with GPN (mostly because of the meds) are advised not to get pregnant. GPN has taken so much away from me that I decided that this would not be one of them. So…first trimester went great. Much to the shock of all of my doctors, my GPN completely disappeard (as did my hemifacial spasm). Was able to go from 800MG/day tegretol to none with NO PAIN. And trust me, 800mg has never completely covered my pain. Then suddenly at 18 weeks, BAM it came back. And actually seems to be worse? I’m 20 weeks now and back on my full tegretol dose, but still in a lot of pain. Has anyone ever been pregnant with this condition and what was your experience??
Hey Sarah, Good to see you. Congratulations on your pregnancy.
I’ve just been reading your blog and so much of it rings very very true with me. I’ve discussed this in depth on some of the other boards,( mainly the LWTN site) and found it to be very a frustrating subject in general, and have often sat in front of my PC upset and angry at people who"just didn’t understand"and I will admit that although I started a number of these discussions, because of the cans of worms they opened up for me emotionally.
I backed away from them, as I found it far too hard to communicate how I was feeling without being defensive or coming across as judgmental myself, every post brought up new questions and new if’s buts and maybe’s for me. A lot of the responses I had were from older people, people without the same “issues” as they were past that stage in their lives if you will. It seems with the GN there are a good few younger women around. So it’ll be nice to be able to talk it through!
The discussions where you answer, Yes, I know that there is adoption, I think it’s commendable, it’s not at all something that I rule out, but as a later option, my questions are about doing this biologically, normally. So while not only wanting a family, feeling the physical biological urge on top of the family urge. We aren’t always to rational when it comes to hormones are we ladies?!Well I confess I certainly amn’t.
Adoption is great, but when you have a condition which manifests in pain identical to TN, which the medical profession called suicide disease for the last however many years, there is no way you’re going to be allowed to adopt in this country, you’d be over before you began, especially when there are people are turned down for only being over weight!
I would love to chat to you about this side of things a bit further, but that’s not what you asked about and I’m going off on one of my all too regular tangents so please forgive me.
I’m delighted you got through the first trimester pain free, that’s the main thing, and that’s the period where you don’t want the tegs floating around in your system, and the major danger from taking the pills significantly decreases from here.
I’ve never had to deal with this and a pregnancy, but what I will say is that I know that the GN is a lot less responsive to meds for many people, and gradually they can become less effective, so it may just be the nature of having gone back on it following a remission, but I’ve never had a remission from this so I’m just surmising.
I wish I could offer more insights on how to cope with the pain during pregnancy, I know there are some guys on the LWTN board that have, and it might be useful to you to have a wee look over the previous pregnancy discussions, or just pop a post up asking, there are a lot more members on that board, and with the higher traffic you may be more likely to get an educated response.
But I really hope that you get your pain under control soon hun, much love to you.
Gracie x x x
Wow, Sarah! What a tough issue to be dealing with. As far as the medications and impact on pregnancy I would focus doing more research on people with seizure disorders, since that's where all the medications that seem to work for GPN originated. It's also a much larger population and there has to have been many women who've had to go through pregnancy on tegretol or one of the many other anti-convulsant medications. In terms of anti-convulsants, tegretol is... well, not outdated, but it's certainly not the latest. Of course the oldest ones are delantin and phenobarbitol, but in recent years there's gabapentin, topirimate, lyrica, trileptal and I'm sure others on this site know of many more. I'd have to assume that some might be less risky in pregnancy and others more risky. I just quickly googled "pregnancy anticonvulsants" and tons of info came up. I wonder if you would have access to a specialist who could do routine nerve blocks on you, at least until you've had you're baby(ies).
All the best,
Ron
I know this was posted a long time ago, but I have GPN and got pregnant two months ago. I ended up miscarrying and I feel this was meant to happen, as I'm due to have neurosurgery in two weeks. Anyway, I didn't know I was pregnant until I had the miscarriage, but I did notice a hugeeeeeeeeeeee decrease in pain. Almost pain free. It's been almost 3 years that I've have GPN and it's been a horrible nightmare with 0 periods of remission and constant pain. A week after my miscarriage, the pain came back. Worse than it's ever been. Hormones do crazy things. Everyone's been asking me if I could get injected with the same hormones that you produce when you're pregnant. I don't think it works like that haha. Let's just hope this surgery works. I'm so sick of all of this.
Jade/Ron - Just a follow up. My first baby (that I had while taking Tegretol) is now 1 and is beautiful and healthy. I"m now pregnant with baby #2 (third child though - first is adopted) and I'm still taking tegretol. I'm now about 22 weeks. I mentioned that during my first pregnancy the GPN went away. I full expected that to happen the second time, but it didn't. :( The doctors were hopeful that it would, but I guess pregnancy isn't a silver bullet. After having a level II ultrasound, blessedly, this baby appears healthy too. I would really like to get rid of this stupid GPN so that I could be the best mother possible, but I'm doing the best I can. Frankly, the kids really distract me from the pain. They are such a blessing.