Does pregnancy affect TN, like does it make it worst?

Can somebody please tell me if pregnancy makes TN worst. I swear I’ve never had TN pain this long prior to the pregnancy.

Well I got diagnosed during pregnancy, I will let you know if its worse or better when I deliver soon!

There's a group which would be a good place to ask:

http://www.livingwithtn.org/group/pregnancyandtn

Ok, are you taking medication? How far along are you, and when were you diagnosed? I know I’m asking alot of questions but you’re the first person to reply.

I never felt better than when I was pregnant! No pain whatsoever

Can't image having to deall with this while pregnant. Does TN always progress that you will need gamma knife of mvd? Has anyone had it for year and its controlled with meds - but not meds to the level that you are zombie like?

Hi, I’m also 26 weeks and had never had tn before, I was diagnosed at 18 weeks after suffering since 11 weeks with what I thought was dental pain. I’m concerned about the effect carbamazapine could have on my baby? Im still suffering sickness but not sure if that’s pregnancy or the pills. I’m having a MRI on 30th but still hoping that it’s worse durring pregnancy and will disappear when the baby’s born.

@Donna, I’m 20 weeks pregnant and am taking the same medication. It really isn’t working as I still experience pain. I too am concerned about the health of my baby but I need something to deal with this horrible pain. I like you got this goes away. I hoping it goes away soon and stay away. Are you able to eat? I’m not. I’m mostly on liquids and a cup of noodles maybe.

Firstly congratulations. Sorry to hear your suffering tho, I have in the past few weeks felt better I am taking 2 low doses of the carbamazapine 1 in the morning and 1 at night although I wish I could take more but the pain I have now is bearable .I tend to take my night time one at 4 pm as the pain is bad but do manage to eat in the morning now but previous to that I lost weight and felt crap all day and night.
I have asked my midwife weather it will affect the baby when it’s born ie if it will be addicted to drugs but she couldn’t answer my questions, but the drs have scanned the baby well and he/she seems fine. And have reasured me that epileptic mothers have healthy babies and sent me to a drug specialist whom also put my mind at rest and the majority of patients I saw in the waiting room where crack/drug addicts so I do feel more relaxed, and after all a friend of mine has an autistic child and she’s a healthy veggie yoga bod who never took any drugs, and unfortunately the drugs where the only way forward for me as I couldn’t go on as I was. I do hope you feel better soon. What are you taking? Have you seen baby drs?

@Donna, congrats to you as well. I like you feel sorry that you are suffering from this horrible condition. I too take carbamazaepine, but was instructed to take it at night as that was my ultimate worst time. I find that it has allowed me to lye down, but I still do get attacks every three hours lasting up to an hour at each time. Yes my doctors have all assured me that the meds are safe and that the baby will be fine. When I went for my second trimester screening he was fine. Hearing that you exist maked me feel better as I see I am not alone, although it sucks that we share this in common. I know I’m halfway there, but I do wish I was full term.

I have also been wondering if TN gets worse with pregnancy. I take gabapentin (up to 1200mg a day), but I weaned myself off during a pain free period a few months ago. I have been trying to get pregnant for 2 and a half years with no luck, so I started taking Letrozole this cycle and now my TN pain is back. I hope the Letrozole works and that I do have a positive pregnancy test around Christmas. I also hope that the TN pain goes away. I have discussed taking Gabapentin during a potential pregnancy and I have discussed not taking it. My husband only wants me to take prenatal vitamins and that’s it. For now I am not taking it out of fear of miscarriage, birth defects, or anything else… That is if I am even able to get pregnant in the first place. I don’t know how long I will be able to deal with the pain though.

In a strange way it’s nice to know I’m not the only one too :slight_smile: I do wish that I could enjoy the pregnancy but I’m wishing it away.
I really didn’t want to take the meds but my husband was very kind and understanding and hated seeing me in that much pain and I must say I am glad he made me take them.
Have you only had TN since being pregnant? When’s your due date?

@Donna, no I’ve had episodes in the past prior to the pregnancy, but it was never this bad nor lasted this long. I was never on medication either. Every day and night I wish for it to go away and stay away so that I can enjoy a little bit of the pregnancy. I have faith that it will. I’m due 5/5/14. What about you?

Well all I can say is that I feel for you, and do hope that it eases for you soon. I am due 23rd march but can’t come soon enough :slight_smile: I’m so impatient.
But a little nervous about the MRI scan as I have been told TN can be caused by a tumour!? I’m sure I’m fine but will relax when I know for sure.
But very soon we can cuddle our babies and must try and stay positive. And not sure about you but this is my 2nd child and labour for me was more comfortable than the pain from TN.
Donna x
Ps btw I was told to take an extra 5mg folic acid to protect the baby. Have you ?.

I had a MRI done and they found nothing. So I don’t have a tumor. But I was just as nervous as you were before I had it done. And oh do I wish I was in your shoes with the due date. I’m just hanging in there in the meantime. And no, they didn’t tell me to take on extra folic acid to protect the baby, hmmm I wonder why? Are you taking the additional amount in pill form or just in the food you eat? Also, I hope I’m not being too nosey but what is your dosage of medication that you take?

I don't know if it was coincidence or not but I was in remission completely during my pregnancy. It was just prior that I got diagnosed, I continued taking gabapentin for the first trimester (at the okay of my midwife and neurologist) and then weaned myself off and it didn't come back until a couple months ago for a bit (my son is now 9 months old). I did take the gabapentin again from 36 weeks on just in case it came back I didn't want TN pain on top of labour pain so my midwife and I discussed it and she thought it was a good idea and I took it for 2 weeks after he was born until we were situated and breastfeeding was well established. My son decided to enter the world at 41w1d so I was on it about 7 weeks then. Otherwise I've been completely off of it and had no problems.

Folic acid is only important in the first couple months (most important in the first 2 weeks after ovulation). By the time most people find out they are pregnant the major time folic acid is needed has past. Careful taking it for the whole pregnancy as it can actually have some side effects to baby if you take too much and all through your pregnancy.

Not at all, I take just 200 as he said that was the safest dose for now, but it is certainly better and bearable but I’m aware that it’s still there. And I take my Normal pregnancy vits plus 5mg folic acid, my dr prescribed it so it was free but I’m sure you can just buy it. Have you been told anything about the later stages of pregnancy and weather your baby will need special care when he’s born x

@mwaring, I wish I could say the same. It seems like mine is at its worst and I hate it. How long did you have it? That’s my fear too that’ll it come back really hard after the baby.

How long did I have it when it came back after? Just a few days. But as soon as I get any twinge, even just a clogged sinus, I go right back on my gabapentin. I had a discussion with a doctor who is world renowned for breastfeeding expertise about it when he was asking about my meds. He's actually heard of TN (which shocked me lol Especially since he's a paediatrician who specializes in lactaton) and he said every time he's seen a mother with it breastfeeding seems to send it into remission, even if it was acting up during pregnancy. Of course this is PURELY anecdotal and far from proof of anything but maybe it can give you a bit of hope :)