Yes I know there is a pregnancy section here but nobody responds and its not very active…I think I may have asked this in the past but can’t remember…( don’t you love the memory issues from your meds??) Anyways I made an apointment for next week. Finally I got the guts to go speak with my obgyn and these medications…my gp says no but she also says " I’m not an obgyn" . I’m terrified of hearing a flat out no… There has got to be ways…how do eptileptic woman have babies? And I can’t try switching meds because believe me when I say I’ve tried them all I have and the cocktail I’m on now is the only one that gives me ANY relief. Please someone if you know anything let me know…I take kolonopin , trileptal gabapetin and nortriptalyn but I’m 80% sure I’m about to stop the nortrip…I don’t like it. Thanx
Hi Jennifer-
I’m on a low dose of Tregretrol XR. When I talked to my doctor about pregnancy she said I would definitely have to switch meds before trying. When I was searching the drug I found women taking it at much higher doses that said their children turned out fine and others saying it might be a link to Autism. If it not better my the time I’m ready I think I’m going to consider Gamma Knife.
I’m so worried my Dr is gonna say point blank no. Are you type 1 or 2? Just wondering because you mentioned gamma knife. How old are you?
Also did your Dr say a mention they would prefer you to be on?
I dont know how long you've had TN, but maybe consider one of the minimally invasive treatments. 6 years ago I had my R-TN ablated. No more meds after that treatment. I woke up in recovery with a numb R-sided face but the pain was completely gone. My face is still numb however I've gotten used to it and its not terrible to live with. It was the way to go for me personally. I had enough of all of the medication and their side effects.
Unfortunately about a month ago I started with TN on my L-side. The surgeon said it is very usual to get it on both side but I have it. I will give the meds a period of time but will not live my life on them. I need to figure out my next steps after my MRI (this Thursday). My guess will be to go with MVD. A little scary but my only option. Cant have both side of my face numb.
Good luck!! Try and figure out your options. There aren't many but you do have a couple to choose from.
Unfortunately after visiting 18 drs in a 12 month period not one offered me a surgical option and just about everyone told me it wouldn’t work and or could make my pain worse. I went to a very established reccomended neurosurgeon and literally cried and begged and he assured me these procedures are NOT for people with atn type 2. So I’m kinda just stuck with meds I mean I have no other options and honestly after 18 drs in a year period my brain was fried and I need a break. Ive had atn for 13 months.
So sorry Jenn, I completely understand your frustration. This condition sucks and sometimes the medical field is not so helpful.I didn't realize you had type 2 and my understanding of this condition is limited. Both conditions for me are TN 1 so my surgical options are probably better than type 2. Take a deep breath and move forward. I agree with you regarding epilepsy and their treatments. There must be anti-seizure medication out there that epileptics take when they are pregnant and are safe for your baby. Ask a pharmacist. they are most knowledgeable with meds. Good luck!
Ugh I dread the obgyn apointment next Friday
Aww, Jennifer, it sucks that you have to worry so much about this! I wish I had more to offer other than my fingers are crossed for you, hoping your doctor is empathetic!
I am unable to have kids due to endometriosis and a few other issues. (I had an eptopic pregnancy once when I was very young...) It was very heartbreaking to have the CHOICE taken from me about any future offspring. But I feel better knowing that adoption is an option if I decide I want kids later on, although the clock is kind of ticking on that, too.
However, I have known other women who were told "no" to having kids with severe endomtriosis but would not take "no" for an answer. They suffered through surgery etc knowing that post-birth the endo will grow back and the scar tissue can be painful, too.
If everyone says "no", don't give up. I would recommend you contact a fertility clinic obgyn and have them weigh in on it. They are very kind and work with all kinds of people who are told they "shouldn't" and they may have answers for you. People with lupus, MS etc still somtimes have babies and they are on a ton of tough meds. Don't give up hope.
Hi Jennifer,
For obvious reasons i cant get pregnant, but my first wife was an epileptic and was taking either tegratol or dilaintin i cant remember which one, She switched between the two.Her nuero kept close track of her and we had a beautiful daughter. there wasnt any complication and the doctor took a sample of the umbilical fluid.I dont remember if i got a report on that or not.Any way my daughter turned out good and is very intelligent. The one thing we decided with the dr was not to breast feed. Of course i am not a dr so this is just my experience.
Good luck,
Scott
Thank you everyone for the advice and kind thoughts!!
And update for anyone going through similar situation as me I finally went and saw my OB/GYN and ask him all my questions about becoming pregnant on these medications he said obviously they would like me on as little medications as possible but since I told him I cannot live without the medication he said I should be ok because they are all Category C drugs he said any woman has chance of things going wrong and pregnancy and that he does not have a crystal ball and cannot obviously 100% guarantee me I will be fine but that I should be fine I went in there scared out of my mind thinking he was going to tell me absolutely not but he in no way said those things he just said I would closely be monitor and that a few months before I decide to start trying start taking a prenatal vitamin I left very happy since I thought he was going to say absolutely not but like I said he did not guarantee things would be perfect but that he has seen many of women thousands on the same medications and have perfectly healthy babies that nobody knows what the outcome of any pregnancy will be but that I should be fine . So good news!! It took a lot of weight off my shoulders!!
Hi Jennifer,
I have epilepsy and have had two babies and am pregnant with my third. With my first son I was on tegretol for the duration to control my seizures. I had no seizures throughout my pregnancy or problems with my son. He is now 14 and has nothing wrong with him, he is very intelligent. My second son and during this pregnancy I am on valproate and lamictal as tegretol stopped controlling my seizures after the first pregnancy. I am 34 weeks pregnant now and was diagnosed with TN a few days ago after excruciating pain in my left jaw up to my ear with no dental reasons for the pain. I have been put on lyrica 75mg twice a day to help with the pain. It has reduced the shooting pain but I still have a constant dull ache, like a toothache around my teeth. Throughout all pregnancies I have had to have an increased supplement of folic acid to decrease the chances of neurological problems which these medications can cause. My valproate was reduced by 100mg per day and my dose was split to reduce the drug hit to the baby. Like it has been mentioned on other posts you need to weigh up the risks to the baby and being comfortable and pain free during the pregnancy. Baby is at a much greater chance of injury from me having a seizure than the medication and I can tell you from personal experience that the pain of tn is much much worse than labour. The thought of having to put up with that pain until delivery is both depressing and frightening. At the moment my biggest concern is whether this is now going to be a permanent condition for me or just brought on because of increased blood volume during pregnancy. I am lucky somewhat that it has happened in the third trimester and not the first. Anyway hopefully this helps you a bit. I also breastfed my second for eight months back on my full dose of epilim. My neuro said there would be hardly anything reaching my milk so it was up to me. In my opinion the benefits outweighed the risks.
I’m very sorry about your health conditions but it makes me feel good to know you were on medications while pregnant and everything was fine. Thank you for sharing!! I read online as well about the extra folic acid and asked him and he said he had actually just read an article that morning how to much folic acid is now said to be bad…they are always changing everything! That’s when he recommended starting prenatal vitamins two months in advance. Once again thanx so much for sharing and I really do hope your tn pain subsides.
Also Anna who put you on the lyrica your obgyn or your neurologist?
It was my gp in consultation with my neuro. My neuro said we just need to manage the pain at the moment then if the symptoms continue after the baby has been delivered we will look at MRIs and other checks. My obgyn said its best for the neuro to make the decision about the lyrica because that is his specialty. Fingers crossed the symptoms go away after delivery! I think you will be fine on the meds while pregnant if you need them, as long as the doses aren’t too high. Valpro is one of the worst to be on when pregnant. My neuro sent me heaps of info about it too. I am also on the pregnancy registry for anti seizure med research, but I am in Australia. You could possibly get info from someone like them. Hope all goes well.