Pregnancy and TN

1

I am newly diagnosed after almost 4 years of dealing with chronic nagging pain. I tried Neurontin, but couldn’t deal with the cognitive issues. Now I’m on Lyrica and it’s working a bit. I’m not 100% pain free, but there are times during the day I forgot I have this. So, hey that’s good. However, until Dx, I was trying to get pregnant. At this point, I don’t really want to put that effort on hold. I’m getting older, have had ovarian issues in the past and my doctor has indicated we need to try on our own for a year before we can pursue any medical intervention.

I’m wondering if anyone has any thoughts about mananging TN while trying or being pregnant. All the typical medications are either Class C or worse, so I’m just in a holding patterns right now. Very discouraging. I finally know what is wrong with me, and am being treated, but it conflicts with my biggest goal for 2009.

Would love some thoughts or perspective from anyone living with TN in a similar situation.

Thanks!

2

Hi Shana,

Welcome to the fold, and I hope that the forum here will be of help to you so early on in your diagnosis, As Maeve said there has been some discussion on this already, and I have a blog dedicated to it( or is it a discussion? either way,) there is a lot of information, and speculation, and options discussed, and you might find it an interesting read.

I hope that you find a remission soon and that you get everything you hope for.

Much love Gracie x x x

3

Welcome Shana,
One place to check with about medicines is Poison Control. They have a wealth of information about classes of drugs. You may be told “no way” but at least it is worth checking out.
Example:
When I was diagnosed with TN a MRI was ordered w/ and w/o contrast for the next business day.
They told me at the appt (already in the robe) that I would not be able to nurse my daughter for 48 hours after the MRI w/ contrast.
My Neuro told me 48 hours.
My kids pediatric Dr. told me 12-24 hours.
Poison control told me 12.

Of course by the time all those calls were made and answered it had been almost 48 hours!

Anyways, just asking around, talking to an OB and Pediatrician, poison control and neuro will get you lots of different answers but maybe you will find an answer you like.

For the future: You can take Dilantin when you are nursing. I have no safe while pregnant med info. One thing I remember hearing was that there are meds that are no way safe during the first trimester. Maybe after that the rules change a bit. Wish I had more for you.

I hope you find the answers you are looking for. I am sorry you are suffering with TN. I am very sorry you are also suffering with the emotions of being ready to start your family and needing these medicines to deal with the TN.

Stephanie

4

Thanks Ladies.

I appreciate the replies. I have been on a roller coaster of emotions lately, and it’s been difficult to channel that energy into something productive. I honestly had no idea that there would be anyone out there to talk to, since my neurologist was hardly a wealth of information. Perhaps I should look for someone who actually has some experience with this condition. When I went home to “google” TN a few months ago, the first thing that popped up was a site that described TN as “the suicide disease.” I had a meltdown for about an hour, and then swore off searching for any additional information because I couldn’t handle the results.

Now, as I/we approach almost a year of trying to concieve naturally - I’m starting to have anxiety attacks about job performance, dealing with pain, hormone shots, finding answers,…it’s overwhelming. I’m thinking I may start seeing a therapist. I’m not an outwardly emotional person, and I have a hard time discussing such personal matters so I’m fairly new to discussion boards and the such. I think all your willingness to share will help me deal much better. I really appreciate this outlet, and I appreciate your kind responses. I will try to find the previous forum discussions on pregnancy, and look forward to continued correspondence.

Thank you.

:slight_smile:

5

Hi SHana,
I don’t really have any information that will help but I do remember on my first visit to the neurologist after being diagnosed he put me on Topomax and asked me at that time if I planned to get pregnent b/c I would have to come off of it; however, he alson informed me that this wasn onmly the second time he prescribed Topomax for TN and his other patient had to come off b/c she got pregnant but with all of the changes her body was going through she went into remission in the first couple of weeks. My sister-in-law has bad rheumatoid arthristis quited bad as well and when she was pregnant with my nephew she had to come off her meds but she was pain free except a little in one wrist, she did however have difficult 2 months after the baby as the pain returned with avengance. Wierd things can happen to your body when you are pregnant that are unexpainable. I wissh you all the best in 2009. Keep smiling and never give up on what you want in life!!
Allyson

6

Hi Shana,

I plan to get pregnant again in the next couple years and I am trying to get some alternative therapy in the works. I am seeing an acupuncturist (who is also a fertility specialist and RN) and she and I are now actively working to try and get me off the carbamezapine I am on. I am having some horrible side effects, yet it’s the pill that takes the TN away. I am hoping that in the next couple years my goal of being med free will be a possibility.

My husband got me the book Striking Back (Layman’s Guide to TN) for Christmas. Other members on the site have told me how helpful it is in dealing with TN. They are so right. I have had several questions and concerns and this book seems to answer a lot of them.

I wish you the best and hope you find the answers you need.

7

oh and one more thing - I got TN when I was pregnant, it lasted for a week and then I didn’t get any pains again until 6 weeks after I had my son and I wasn’t on any TN meds because I wasn’t diagnosed until 3 months after the birth. I was told by my acupuncturist that your body seems to go into protective mode when you’re pregnant and like previous poster said, your body does some miraculous things when pregnant. Who knows, maybe you’d be episode free for awhile?

8

Thanks everyone. I hope you are are having an easy week. I am going to look for that book that Misty mentioned, because it would seem like it’s a good primer for my family/friends as well. Most of them look at me and go…huh?

Anyway, to liven up my mood lately, we decided to adopt a poodle-mix from animal rescue this weekend. We named her Daisy. I’ll see if I can upload the pictures. She is the sweetest dog ever, and all she needs is love.

She has definitely been a ray of sunshine given my TN issues and now what appears to be peripheral neuropathy. As well.

I have also started seeing a therapist, and have gone back to my accupuncturist from a few years ago. This is the year to start getting back on track!

9

Hi Shannon…The book is called Striking Back! The Trigeminal Neuralgia and Face Pain Handbook by George Weigel & Kenneth Casey M.D. Make sure you get the 2004 copyright (revised version). I first interloaned a copy from my library and then purchased the book on Amazon. It’s about $25.00 and worth every penny.
Send pictures of the new pup! Sounds adorable!
Take care, Judy

10

Oh Geez…I got your name wrong again! I’m so sorry…My brain doesn’t function after 9pm!
Shana…have a good evening!

11

hi Shana…i was 22 when i was diagnoised with TN. I was on every drug imaginable, and some of my tablets i was on corsed fatility problems due to my periods stopping which reduses ur chances, u need to make sure none of ur meds can cause this for starters. I had an operation to help with my face pain n developed an infection in hosp,so they put me on anti biotics, i then a few days later was wa bridemaid for my brother n had a room so i could relax cos i can not last a full day without a cat nap due to medication i was on…got a bit carried away n due to the anti biotic cancelling out my contriception pill i 4months later found out i was pregnant by my g.p testing me for under active thyroid…lol…what a shock…i was given a disicion…do abort the baby due to medications and fear of face pain deveoping serverly when pregnan,or being in all that pain n taking drugs which will damage the baby…OR do i come off meds, keep my mind focused on being healthy and make my dream come true to be a mummy. I choise the last one…i came off meds, went to pain clinic to help with pain with alternative methods…went to yoga classes which were fantastic, i took very early mat leave to help with stress levels, my partner helped and family helped when needed and i just ensured when it was cold i didnt go out, and i never wore make up just in case it triggered…

I believe if u want something so bad u can make it happen, dont fear the next day…plan to live it to the full. Do NOT let TN rule ur life anymore than needed…if u deveope the pain when pregnant, which i did a couple of times, u will cope cos u have an inner strenght now,ur baby, and it wil help u pull though.

I hope my advise has been helpfull and i wish u all the best

Hayley

12

Hi Shana - I am pregnant and Have atypical TN. Constant pain for several days then nothing. I had the gamma knife surgery in December 2006 and this seemsed good for a while. i was on 100mg Lamictal and go thtat down to 50mg before I got pregnant. This drug can cause a cleft palate which is typically formed in the 1st 13 weeks. (I am 15 1/2 weeks now). Last weekend I was in terrible pain and had to go back on the Lamictal which I stopped in November when I found out I was pg . I hope that all will be OK with the baby and there won’t be any birth defects and shoudl find out in 2-3 weeks. All I could do last weekend was lay in bed or on the sofa holding the right side of my head.

We all know how crappy the pain etc is so I don’t need to go there!

Most of my pain is brought on by stress, eitehr my mother, or right now job worries so even though my neuorologist says that isn’t the case it is the only “trigger” I can pinpoint. Hopefully motherhood won’t make my stress levels worse!!!

13

Hi,
I am pregnant and had to stop taking all my meds and it has been evil!! My neurologist fired me because I was pregnant! I was only taking neurontin becuase she was not convinced that I had TN. I have an appt. with a new neurologist in hopes that there is something that would be safe for me to take. I am almost out of my first trimester so I am thinking there has to be something. Currently I am taking tylenol and ibuprofen pretty often just to help with the severe tension and some of the pain but it does not get rid of it for long. Did you doc have any ideas for the pain when you did have it while pregnant??




Misty said:

oh and one more thing - I got TN when I was pregnant, it lasted for a week and then I didn’t get any pains again until 6 weeks after I had my son and I wasn’t on any TN meds because I wasn’t diagnosed until 3 months after the birth. I was told by my acupuncturist that your body seems to go into protective mode when you’re pregnant and like previous poster said, your body does some miraculous things when pregnant. Who knows, maybe you’d be episode free for awhile?

14

Please let me know what your neuro doc thought about meds after 13 weeks! I am currently 10 weeks and suffering so much! I am so terrified that I have hurt the baby somehow just by taking the the ibuprofen that I have taken in the first 10 weeks. I know its supposed to be safe the first half of the pregnancy but I have also taken some excedrin which has aspirin in it. It is a heart ached to think I am hurting the baby, but the pain sometimes is unbareable!





Anne said:

Hi Shana - I am pregnant and Have atypical TN. Constant pain for several days then nothing. I had the gamma knife surgery in December 2006 and this seemsed good for a while. i was on 100mg Lamictal and go thtat down to 50mg before I got pregnant. This drug can cause a cleft palate which is typically formed in the 1st 13 weeks. (I am 15 1/2 weeks now). Last weekend I was in terrible pain and had to go back on the Lamictal which I stopped in November when I found out I was pg . I hope that all will be OK with the baby and there won’t be any birth defects and shoudl find out in 2-3 weeks. All I could do last weekend was lay in bed or on the sofa holding the right side of my head.

We all know how crappy the pain etc is so I don’t need to go there!

Most of my pain is brought on by stress, eitehr my mother, or right now job worries so even though my neuorologist says that isn’t the case it is the only “trigger” I can pinpoint. Hopefully motherhood won’t make my stress levels worse!!!

15

Hi Shana,

I am going this right now with my husband. I just talked with the ob/gyn and they have me seeing a perinatal doctor before I conceive. My ob/gyn said its typically a practice they do when you are pregnant but having TN is not something common for women our age. They hope to be able to put together a pain management plan for the pregnancy and later. I have had 2 MVD’s and just went back on trileptal to control the pain. My neurologist said the only thing that he would prescribe for pain is tylenol. I hope once I get my questions answered I will be able to give you some feedback on what they plan to do. For myself I am will not go on medication while trying to conceive and while pregnant but that is my personal decision.

Jessy

16

Hi ladies,

It’s been almost two years since I posted that original message, and am surprised to see some of the latest replies. I figured it was lost in the archives. Thought I would provide an update!

About a year and half ago (July '09), I decided to go off drugs completely. It was a hard decision, because I was really scared of dealing with the pain and trying to lead a “normal” life. It was rough at first, but I think the issues were more about weening myself off of Lyrica, and letting go. I decided to start seeing an accupuncturist, and with regular appointments (at first once or twice a week – now down to monthly) I started to feel like I could at least channel the pain. Those appts combined with a consistent yoga practice have made a big difference. Now granted, that’s not going to work for everyone, but I was committed to getting off meds and trying real hard to get pregnant. I still have my bad days, but they are maybe a few times a month. Some times I go for weeks without really paying attention to the pain. When I feel it coming on, I let those around me know I need to “check out” for a few hours, and find a quiet place I can meditate or just lie still. My boss has been really good about letting me use the mother’s nursing room to sit in the dark.

I check in with my neuro every few months, and have had a few MRI’s in the last year, but the nerve inflamation had visibly subsided and he was no longer advocating surgery, which was going to be my next move if getting off the meds wasn’t working.

After his last diagnosis (back in January '10) my husband and I started seeing a fertility specialist, and by March, with the help of IVF, we were pregnant! I am now due Dec 11, 2010 and have not had a bout of pain in months. …someone once wrote in to this or another posting about how the body does some amazing things to protect you during pregnancy…and I thought…“whatever!” but I have to say I really believe it now. I am still seeing my accupuncturist monthly, and I have been going to pre-natal yoga this whole time, and I plan to keep it up. I know that a newborn will be very stressful, but I’m hoping I can handle it. If my body reverts and I start having real consistent pain again, I know I did the best I could to get to this point, will cut myself some slack, go back to the Lyrica and stop breastfeeding. And when and if I’m ready, I’ll try my holistic treatment again…

I wish everyone could have the same success that I’ve had, but it’s all about trying to determine what is the best for you, and what you are willing to manage, and perhaps looking for alternatives. I’m not pain free, but it’s gotten to a point where I acknowledge it, I schedule an appt as soon as I can, and wait until it passes. And it usually does.

Just trying to take one day at a time…

17

Thanks for sharing your story Shana. I am currently 34 weeks, I was diagnosed with TN when I was about 8 weeks although I had been suffering from it for two years at that point. Taking medication wasn't even an option for me, I'm just dealing with the pain the best I can. I have noticed that the pain has been "muted" (for lack of a better term) while I have been pregnant, but still very much there. I haven't met with a neurologist, I'll do that and get my MRI after the baby is born. My main concern now is what treatment will I be willing to try. I an 31 years old so I have a lifetime to live with this, but I'm also the mother of soon to be 5 kids. I've heard of the side effects of some of the meds and I just can't be loopy and forgetful with so much responsibility. I will be looking into acupuncture and upper cervical treatments, hopefully these can bring some relief.

I hope everything is going well for you and your new little one!