Hi Everyone,
Thought I would put a hello out to everyone. I was diagnosed in 2008 with TN at age 24 and it has been a battle ever since. It took months to get diagnosed but all the neurologists said I was to young. Finally after being diagnosed I saw the neurosurgeon in at UPMC. I had my MVD done in May 2009 and thought I was doing good until about 3 weeks after when it all started again. I was put back on neurontin 1800mgs, baclofen 10mgs, and probably soon trileptal again. I have another appointment in two weeks to see the surgeon at UPMC to hopefully get answers. We are hoping to start a family soon but we don’t know what to do since most of these medications you can not take while pregnant. I was hoping that someone else is around my age and facing the same battle. I hate feeling at a loss and because it causes a bigger problem when you are the female and want to start a family 
Hi Jessy, Susan here I’m only 27 and I was diagnosed in August last year. I didn’t have much trouble getting diagnosed (I was lucky) but I did get the warnings about getting pregnant while on these meds - personally im not trying to start a family but i’ve seen alot of friends struggle through it and so i wish you the best and hope something works out for you. I have read another girls story on here (somewhere) who wrote about her story about trying to get pregnant - there may be something in the discussions forums/blogs so do a little search if you can i’m pretty sure you’ll find some info. Best Wishes, Susan.
Thanks for the reply Susan. In a way its comforting to know that other people are struggling also. It is also nice to see people around my age that understands what this does to us.
Welcome Jessy,
You’re in our prayers. I understand, having this condition seems more difficult for a woman. I hope that the pain goes away as quickly as it arrived. And that you will be blessed w/ a life without worry.
Hi Jessy,
I am so sorry that you are a sufferer of TN. I know exactly what you are feeling about having a baby. I went through the same thing. I have atypical TN and have had it for almost 6 years. I am 37 and I have a son now who is 2. I went off all meds to have a baby and it was really hard. I had a difficult pregnancy because I had complete placenta previa and ended up in the hospital 3 times with bleeding. My last bleed was really bad and they admitted me at 32 weeks pregnant and I was to remain in the hospital until they would do the c-section. Well, my son couldn’t wait. His heart rate kept dropping and they took him by emergency c-section right away. He was born 2 months early but is now 2 and he is healthy and beautiful! I am so grateful for that. But what I wanted to say is that when I ended up in the hospital my facial pain was off the charts! I think it was a combination of all of the hormones and my stress and anxiety about whether my son was going to be okay. They ended up putting me on prozac and ativan because I was so depressed. I just wanted to let you know that I was on medicatin towards the end and he is healthy. We want to have another one and I feel exactly how you feel right now. How am I going to get through another pregnancy without meds. It is so scary to take them when you are pregnant for fear you would hurt your baby. I don’t know what I am going to do either. I just wanted to say hi and tell you, you are not alone in wanting to have a baby. I hope there is something the docs say that we can take and not worry. Your fellow sufferer Lori
PS. I noticed you are in MA too. I live in MA as well.
as my father would say, “balderdash!” there are epileptic women out there who give birth to healthy babies every day on medication. my pain management doctor, who is also a neurologist, told me if i ever wanted to have a baby, no problem. don’t let doctors scare you. some obstetricians would prefer if you can try to hold off for the first 3 months when the baby is developing, but if you can’t, not the end of the world. there is even a member on here who blogged about her pregnancy experience while on TN medication. her baby is perfectly healthy.
there are national drug databases online where women report their births while they took medication; which kind of medication, how much and what, if any side effects happened to the baby. go online and educate yourself; it takes away the fear when you have the knowledge. then you can make an informed decision.
for the record, i take topamax.
the researcher
I am 24 weeks pregnant now with bilateral facial pain. I had to get off of all my meds for the first 12 weeks except for hydrocodone, which didn’t help much at all. Then at about 15 weeks I was able to get back on some anticonvulsants but I am not at the dosage I should be at. I am on 1200 gabapentin (neurontin), valium, baclofen, and hydrocodone now but am sure I will be increasing after the baby. I am 31 and have been dealing with this for about a year. Pregnancy can be a battle with this. I hope your doctors can work with you and help you through it. It would be good to talk to them before hand and see what they suggest. Good Luck - and it is such a good feeling to know that you are not alone!
I can understand how you feel. Luckily I was seen by a neurologist that immediately put me on tegretol and was able to diagnose my TN. I was 21 when it happened; I have a 4 year old son and was working on having my second child. This has thrown my life into chaos also. I am wondering if you would recommend MVD? I am so scared of this.
WoW thank you for all the responses, I can’t even begin to tell you how much it means to me. It is good to hear all the pregnancy stories that were successful with this terrible disease. I met with the neurosurgeons again a week ago and their recommendation was another MVD. They believe that not only do I have the trigeminal but also geniculate and glossopharyngeal neuralgia. At this point I am just scared, I know I can’t live on the high dosage of meds that I am on but never thought I would need a second MVD. Erin the MVD helped with the trigeminal a tremendous amount. Personally in my case they said the trigeminal was so bad that it masked the two other neuralgias. The worst part of the MVD for me was the days following in the hospital. The only part of my body I could move were my eyes every other part was so sore from the way they position you during surgery. After getting out of the hospital I was up and around pretty fast.
What surgeon at UPMC did your MVD?
I had Dr. Gardner and Dr. Horowitz who both did it. They switch in the middle of the surgery to ensure that nothing was missed. Primarily I have been seeing Dr. Gardner.
Please email me. Have some information that you might find interesting.Thanks Sarah
Jessy said:
I had Dr. Gardner and Dr. Horowitz who both did it. They switch in the middle of the surgery to ensure that nothing was missed. Primarily I have been seeing Dr. Gardner.
Hi Jessy,
I know it's been over 4 years since you posted, but I will getting surgery for Geniculate Neuralgia done by Dr. Gardner at UPMC on October 1. I am traveling from southern Arizona for the surgery. I won't be getting an MVD. He will be cutting the nerve that is causing my pain, and has been every moment for the past 3 years.
Even though you had another surgery done I was hoping you could let me know about your experience at UPMC and with Dr. Gardner. How are you feeling now? Did the MVD relieve your pain? I sincerely hope it did! I'm getting nervous as this will be my second surgery for GN, and I've never been away from my two daughters or husband for so long. I hope that you were able to start a family as you mentioned in your post from 4 years ago! I'd be grateful if you could write and let me know how your surgery went and if you are still pain free. Thank you ahead of time!
Be well,
RueAnn