I am currently heavily medicated on both the TN meds & painkillers at present due to TN pain (tregitol, arcoxia, apo-amitriptyline, ultracet and even lorazepam to help me sleep 
) and with all these medication, my doctor has advised that i should not be conceiving like many of us out out there, we can barely function or lead a normal life. I used to lead a vibrant life and now even talking is kept to a bare minimum to avoid the pain to strike
What can i do or take to alleviate my pain without having to depend on these meds which is clearly is not good for my/our body
i have only been suffering from TN less than a month but i honestly can’t deal with this well … i honestly want/need to get back to my normal routine. i want to be back on track with my husband in trying to conceive a child. Please, if anyone can give us some useful suggestion, we would humbly appreaciate it.
Sham,
I am sorry. I was past childbearing age so I did not have that issue. But I believe we have had some trying to conceive while on medication but I’m not sure they were on as many. Have you had an MRI or consulted a neurosurgeon?
Liz
I am the same situation but my ob/gyn said no babies. We have 1 daughter who is 2.
We are looking at surrogacy but from the Tregitol my eggs not be any good. I am going to have to get them tested
Good luck!
Sham,
I’m not about the board much these days but when I saw your post I had to reply.
I wish I could give you one fix all baby friendly mend it pill, but I can’t do it, I’ve looked for the same fix myself, and am in almost exactly the same situation; and I’ve come up blank. I’ve been battling this for 3 years, but its; secondary GN that I have, and you are right, it’s a hell of a thing to process, and for me, the fertility aspect is the most devastating. If you read over my blogs/discussions this is something that I discussed in some depth on the board here and believe me it caused some controversy and may have opened up a few cans of worms.
I got upset and angry about it, and about some of the implications/assumptions that people can make, and I don’t mean that exclusively to views on the board and have since tried to limit my discussions on this to with people who are in the same situation and don’t judge and jump to conclusions that can make the whole thing more difficult.
The long and the short of it seems to be this, you either risk trying for a child on the meds ( monotherapy is the preferable way of doing it if you do, but not recommended, and that in itself can depend on the type of meds you are taking)
You can go and have any of the surgical options done and hope it fixes you so you can be med free.
Or you go cold turkey and hope for the best- but with this pain, un-medicated I know the last thing on my mind is getting down n dirty and going at it like bunnies.
That is the unfortunate list of what I’ve found to be our options.
The others are this, adoption will be gleefully suggested to you by many, it’s a brilliant option, a commendable thing to do, something I admire respect and certainly wouldn’t rule out as something I would do in later life, and it’s also what people who don’t know what else to say will suggest as a “band aid” people assume that it would be a suitable fix, they dont necessarilly understand the biologial urge that comes along side too. Neither to they think of the likeyhood of being accepted to adopt when you have a condition dubbed suicide disease, when people in perfect health are turned down as prospective parents for being overweight!
The only other thing is surrogacy, I don’t know what your law says about it but here you could find a surrogate to carry your full biological child and they could change their mind with no legal come back, which is a scary thing!
This my friend is the unfortunate set of options that I have found, I wish with all my heart that there was a magic fix, and I believe that for some people with TN once they fall pregnant ( medicated or otherwise that they cope better with the pain, I would imagine for others though that it could be much worse, my pain is certainly worse when I’m on my period and is affected by hormone fluctuations, so I imagine it works both ways)
I wish that I could give you a straight answer or get out clause or a way to work round it, and each one of the options I’ve mentioned neither going to be quick easy or straightforward, and I have cried myself to sleep on more nights than I can count for the self same thing.
My final diagnosis (which I received in the last couple of months) means that my surgical options are different and not as risky as the MVD etc but I have no guarantees of getting fixed or off the meds even if I have a “successful “ op.
I don’t mean to sound pessimistic or negative, but these things weren’t made clear to me in the early days, I was on the drugs for the best part of a year before I found out that it they were linked to birth defects, ( neither was I aware that the anticonvulsants could render the pill ineffective, and when they upped my dose and changed the pill was on I went loopy) it wasn’t something my doctors had told me about, but then again, in the early days I don’t think they expected me to be on them indefinitely.
I’m only telling you all this as its what my experience has been and what the options I have found are, I hope and pray you find the answers you need and find a way to have your dreams come true, all my love and thoughts
Gracie x x x
Hi,
I couldn’t figure out what state you are in but I am TX. TX have very friend surrogacy laws for gestational surrogacy only. Before any transferring can be done, you have to get a pre birth order which means your surrogate has to give up the child. Its is costly, the lawyer is about $2,500. IVF is covered under my husband’s insurance up to a certain limit.
I understand your frustrations. I thought Tegretol would be like my zocor. As soon as I stopped taking it, I would be ok. I was totally crushed when my OB told me it might affect the quality of my eggs. I am adopted but my husband only wants a biological child. I can understand his train of though (even if I don’t agree).
Hugs. I stopped taking Tegretol and have been hoping I can control this with only the Klonopin.
I do wish the full extent of what the T would to by body was explained to me before I started taking it. Its is heartbreaking esp. when everyone around you is pregnant.
Hi,
I read the above replies. They made me sad. I can’t imagine having this on top of everything else. So, even though I have not had to deal with this part of TN; I want to share something with you. It can and does go into remission. There are different things that can make it worse. (stress, lack of sleep, weather, hormone balance,etc) So here’s the deal the worse thing you can do to yourself is give up hope at this point. There are lots more options out there than drugs. Do your own research and learn what triggers your pain. Focus on getting you okay first. Remember Doctors are not God. They are human with an opinion, just like you are. You’ll be in my prayers. This place is a great sounding board too. So, questions you have or just needing to have someone understand.
(If we focus on what we have lost…we can never see what we have been given.)
I am sorry to have been missing in action from this site for sometime now … but i have some really happy news to share with everyone 
I am pregnant! 4 1/2 months now. it is still early. but i am more confident now as during check-ups and ultrasounds, baby is looking really healthy thank GOD! Will know for sure before chrismas when they carry out a more detailed scan to ensure baby’s heart and all are formed properly. please pray really hard for me and baby
My neurologist has advised me that the pregnancy will either make the TN better or worst! But the sec i knew i was pregnant (4 weeks into my pregnancy) i stopped all my medications for the sake of my baby’s health (this is foremost important to me). And the most amazing thing was my TN has not triggered, so far. there are days i have felt slight twinge in my right cheek but the pain is bearable and i can do without my medications. being pregnant is an amazing miracle for me, in so many ways… and there’s hope after all…
Sham,
That is wonderful news. I will pray for you and your baby. Pregnant, not medicine and only TN twinges. I know you are happy and feel very blessed. I hope your pain relief continues. And I know your baby will be fine. Keep us posted. The baby will be here before you know it. I have a friend due on the 27th of Dec. I can’t believe how how fast the time has flown by. God bless you.
Liz
Sham said:
I am sorry to have been missing in action from this site for sometime now ... but i have some really happy news to share with everyone :-) I am pregnant! 4 1/2 months now. it is still early. but i am more confident now as during check-ups and ultrasounds, baby is looking really healthy *thank GOD!* Will know for sure before chrismas when they carry out a more detailed scan to ensure baby's heart and all are formed properly. *please pray really hard for me and baby*
My neurologist has advised me that the pregnancy will either make the TN better or worst! But the sec i knew i was pregnant (4 weeks into my pregnancy) i stopped all my medications for the sake of my baby's health (this is foremost important to me). And the most amazing thing was my TN has not triggered, so far. there are days i have felt slight twinge in my right cheek but the pain is bearable and i can do without my medications. being pregnant is an amazing miracle for me, in so many ways... and there's hope after all...