Tondalea
11-20-2003, 01:55 PM
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Hi, I am new to this board, just found it today. I was diagnosed with Trigeminal Neuralgia about 4 years ago. I have been on Tegretol (hated it), Neurontin and Trileptal. I got pg last year and gave birth to a little girl in July. When I found out that I was pregnant, I was on Trileptal and stopped taking it. I have been fortunate enough to be pain free until yesterday. I thought I was going to die. I took two trileptal and the pain calmed down a little. I was taking 2 300 mg pills twice a day. I took one this morning and plan to take one tonight. I am still in a little pain, but I know that it takes a while for the meds to get into my system and fully work.
Okay, here is the problem. I am currently breastfeading and would like to continue until my daughter is a year. She is 4 1/2 months now. Does anyone know where I can get info on Trileptal or Neurotin and breastfeeding. I called my OB and she said to call my pediatrician. I have left a message with my pediatrician and my General Practicioner who specializes in Neurology, but I havent gotten a phone call back yet.
I am so depressed now because I think that I may have to stop nursing and things were going so well. My daughter takes formula and a bottle during the day, but she doesnt like to take a bottle from me. I'm just wondering that if I can't take it if I will have to abruptly stop nursing or if I will have some time. It just seems so unfair.
Thanks for any help that you can give me.
Hi, I am new to this board, just found it today. I was diagnosed with Trigeminal Neuralgia about 4 years ago. I have been on Tegretol (hated it), Neurontin and Trileptal. I got pg last year and gave birth to a little girl in July. When I found out that I was pregnant, I was on Trileptal and stopped taking it. I have been fortunate enough to be pain free until yesterday. I thought I was going to die. I took two trileptal and the pain calmed down a little. I was taking 2 300 mg pills twice a day. I took one this morning and plan to take one tonight. I am still in a little pain, but I know that it takes a while for the meds to get into my system and fully work.
Okay, here is the problem. I am currently breastfeading and would like to continue until my daughter is a year. She is 4 1/2 months now. Does anyone know where I can get info on Trileptal or Neurotin and breastfeeding. I called my OB and she said to call my pediatrician. I have left a message with my pediatrician and my General Practicioner who specializes in Neurology, but I havent gotten a phone call back yet.
I am so depressed now because I think that I may have to stop nursing and things were going so well. My daughter takes formula and a bottle during the day, but she doesnt like to take a bottle from me. I'm just wondering that if I can't take it if I will have to abruptly stop nursing or if I will have some time. It just seems so unfair.
Thanks for any help that you can give me.
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Cymy Sue
11-22-2003, 11:16 AM
Hi Tondalea & Welcome,
I'm a Granny, but your post caught my eye because my niece has a month old baby and is nursing. I checked several sources that I use due to family members, including myself, having drug and medication sensitivities. All of these sources say about the same thing about these 2 drugs:
Neurontin
It is not known if gabapentin is excreted in human milk and the effect on the nursing infant is unknown. However, because many drugs are excreted in human milk, gabapentin should be used in women who are nursing only if the benefits clearly outweigh the risks.
Trileptal
Although it's not known for sure, there is good reason to believe that Trileptal can cause birth defects. If you are pregnant or are planning to become pregnant, tell your doctor immediately. Trileptal should be used during pregnancy only if the potential benefits justify the risk.
Trileptal appears in breast milk and could cause serious side effects in a nursing infant. Check with your doctor. You'll probably need to make a choice between breast feeding and continuing your Trileptal therapy.
Cymy Sue
I'm a Granny, but your post caught my eye because my niece has a month old baby and is nursing. I checked several sources that I use due to family members, including myself, having drug and medication sensitivities. All of these sources say about the same thing about these 2 drugs:
Neurontin
It is not known if gabapentin is excreted in human milk and the effect on the nursing infant is unknown. However, because many drugs are excreted in human milk, gabapentin should be used in women who are nursing only if the benefits clearly outweigh the risks.
Trileptal
Although it's not known for sure, there is good reason to believe that Trileptal can cause birth defects. If you are pregnant or are planning to become pregnant, tell your doctor immediately. Trileptal should be used during pregnancy only if the potential benefits justify the risk.
Trileptal appears in breast milk and could cause serious side effects in a nursing infant. Check with your doctor. You'll probably need to make a choice between breast feeding and continuing your Trileptal therapy.
Cymy Sue
Michelle W
11-24-2003, 01:33 AM
Hi Tondalea,
I was wondering if you could tell me how you got trigeminal neuralgia? I was wondering if it was due to a surgery or injury? I am having symptoms similar to atypical trigmenial neuralgia and I am looking for infomation regarding it.
Thanks
I was wondering if you could tell me how you got trigeminal neuralgia? I was wondering if it was due to a surgery or injury? I am having symptoms similar to atypical trigmenial neuralgia and I am looking for infomation regarding it.
Thanks
Tondalea
11-26-2003, 10:10 AM
Michelle,
I really dont know. It did start after a dental visit, so I would have to say that didnt. I was in so much pain yesterday that I just sat up and cried. The trileptal isnt working. I have to call my neurologist in a little so that she can call something else in for me. I have plans for this weekend and I dont want to be miserable. One thing I can say is that I wont be eating a lot.
I really dont know. It did start after a dental visit, so I would have to say that didnt. I was in so much pain yesterday that I just sat up and cried. The trileptal isnt working. I have to call my neurologist in a little so that she can call something else in for me. I have plans for this weekend and I dont want to be miserable. One thing I can say is that I wont be eating a lot.
Tondalea
11-26-2003, 10:13 AM
Thanks Sue,
I spoke to two different pediatricians who seem to think it's okay for me to take it, so that's what I've been doing. I think it would be traumatic to my daughter if I were to abruptly stop nursing. I may have to anyway because the trileptal is not working. I am still in pain. I guess not as much as I would be without it, but I am uncomfortable.
I spoke to two different pediatricians who seem to think it's okay for me to take it, so that's what I've been doing. I think it would be traumatic to my daughter if I were to abruptly stop nursing. I may have to anyway because the trileptal is not working. I am still in pain. I guess not as much as I would be without it, but I am uncomfortable.
Michelle W
11-27-2003, 03:33 AM
Tondalea,
I hope the neurologist is able to prescribe something else for you or in combination with your medication to make you more comfortable.
I am sorry you are in so much pain, but I too am having trouble. I understand the crying due to pain. I think there is a lot of suffering on this board. Have you checked out the neuropathy board? My husband told me today that I should take a look at it because there are people who have similar problems with neuralgias like you and I.
I hope your new medication works and be sure to let me know. I am also looking for answers and would appreciate hearing your success story. Happy Thanksgiving.
Thanks,
Michelle
I hope the neurologist is able to prescribe something else for you or in combination with your medication to make you more comfortable.
I am sorry you are in so much pain, but I too am having trouble. I understand the crying due to pain. I think there is a lot of suffering on this board. Have you checked out the neuropathy board? My husband told me today that I should take a look at it because there are people who have similar problems with neuralgias like you and I.
I hope your new medication works and be sure to let me know. I am also looking for answers and would appreciate hearing your success story. Happy Thanksgiving.
Thanks,
Michelle
brog76
09-03-2008, 08:58 PM
I have been suffering from trigeminal neuralgia for 7 years and have been on almost every med from Tegretol to Topamax and I really think you should check out the trigeminal neuralgia association at endthepain.org they have so much resources and have helped me through my MVD surgery and they have a national conference devoted to TN and it is truly amaizing. Please get in contact with them.
temera2
09-03-2008, 11:10 PM
:confused: Hey there it breaks my heart to read your post... Gosh i hope you are ok :( Congratulations on your baby girl- she would bring so so much joy to your life:)
I was just wondering what symptoms of trigmia neuralgia youve had... is it associated with your tmj.. i was convinced that i had that too due to my ongoing earaches but my earaches are caused by my jaw in odd positions and also clenching.. as part of Trigmia neuralgia do you also get the earaches...? i went to a surgoen and he ruled out neuralgia.. due to my age etc. but i might have it but i just dont know what the symptoms are and how it feels?
Im just really confused as that and tmj similar illnesses?:confused:
You are in my thoughts, hang in there
I was just wondering what symptoms of trigmia neuralgia youve had... is it associated with your tmj.. i was convinced that i had that too due to my ongoing earaches but my earaches are caused by my jaw in odd positions and also clenching.. as part of Trigmia neuralgia do you also get the earaches...? i went to a surgoen and he ruled out neuralgia.. due to my age etc. but i might have it but i just dont know what the symptoms are and how it feels?
Im just really confused as that and tmj similar illnesses?:confused:
You are in my thoughts, hang in there