New diagnosis and I'm pregnant. yay

General General TN & GPN (Old Site)
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Hello, I have been suffering with TN for 14 weeks. I just recently received a formal diagnosis. I received this diagnosis only after paying over 600$ to have wisdom teeth removed thinking that was the problem. Since I am 7 months pregnant there is really no treatment I am allowed at this time. I take Norco ( that don't seem to help) . I also use Lidoderm patches and apply heat to my jaw. Only the right side of my face is affected. These attacks are so horrible I feel like my ear drum is going to burst and my eye is going to pop out of my head. I haven't been able to lie down in almost a month bc lying down makes the pain even worse. My last flare up ( which is cont. at this time) has last a total of 36 non stop hours of pain.

I have been to the ER 2 times this weekend and received Dilaudid injections but still no relief.

I feel like no one understands this pain and everyone thinks I am making all of this up for pain mediation.

I am physically and mentally exhausted; I didn't know one human could handle this amount of pain for this long . It has gotten so bad I have had to call in to work this week ( I am a nurse) . I am so scared this pain ill never go away . I don't know how much more I can handle . I am willing to acceot any sort of advice for pain relief anyone might have.

I also just look forward to hearing from people that know what I m going through .

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Hi,

I'm so sorry you are going through this and being pregnant adds a whole other dimension to your problem. How far along are you in your pregnancy?

This happened to my aunt while she was pregnant. This is a long time ago so hopefully there are more treatments available to you. At the time she saw a neurologist and could not take any medication. Her pain actually went away after she was had her son and never came back....not to say that that is usually the case.

There is a group on here for pregnancy and TN. Go to the groups tab at the top and look under subject groups.

You are very right in saying that nobody understands your pain unless they have gone through it. You are not alone here and everyone is very understanding and helpful.

Many people with TN undergo unnecessary dental work in hopes of relieving the pain. I had an unnecessary root canal last year.

Unfortunately, going to the ER, even for those not pregnant, does not usually have a lot to offer. This pain doesn't usually respond to pain medication. Given that you are a nurse I am sure you know more about neurological pain than most. Feel free to ask any questions.

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I myself have no children yet but have had the conversation of ‘if and when’ I become pregnant with my neurosurgeon, PCP, neurologist and OBGYN about my options and treatments. At the time I was only on 900 mg of triliptal and had had a formal diagnosis for about 2 years (I have since had MVD). All of them said that if I was to become pregnant I was to stay on my meds, as when I was not on medication I couldn’t eat, drink or really function at all. No one wants to be on any medication while pregnant but that was the better of the two options- the other me not having adequate nutrition. Obviously my third option would be not to have children.

If medication is not a avenue for you, have you tried an increase of vitamins? I had great relief for a few months with taking fish oil, magnesium and b12.

Being recently diagnosed, have you looked into your options for MVD for after Pregnancy? I feel your pain and hope you are able to find relief!

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Hi Katie,
Your situation sounds too familiar to me. I was 20 weeks pregnant when my TN started and, like you, medication wasn’t an option. I was actually turned away from the ER on 2 occasions as they wouldn’t give me anything either. For me, my Obs was prepared to let me try a tiny dose of amitriptiline but it did nothing. There were no other options for me. At that time (2005) you could stay on some medication if you were already established on it, but it couldn’t be started while pregnant. Like you I was also a nurse.

My pregnancy was perfect in every other way but I lost weight and gradually became more and more depressed, not dreaming of holding my son, but taking some medication! I was induced at 38.5 weeks as depression had become a major factor.

I had to make the choice between meds and breast feeding, which I found devastating, but the medical team were supportive of my need for medication and not pushing myself further. In fact my Obs congratulated me on how well I’d done which validated what I’d been through.

I have never been as desperate in my life as I was back then. My role as a Mum hasn’t been how I expected it would be, which I wish I’d been prepared for. I have a wonderful relationship with my son thankfully, but there have been adjustments over the years.

Please, please try to do as much relaxation as you possibly can. Be kind to yourself and be proud of what you’re achieving. Carrying that little life while living with this pain is something nobody else I’ve met has ever understood. I’ve met people who got pregnant who already had TN, but never somebody who got it during pregnancy. I promise you, that you can do this. If I can and despite being induced, gave birth naturally, I know you can do it too. Focus on the knowledge that you can soon have medication, your child is safe and it’s because of you and your passion as a mother to protect him/her. I tried, later on, to talk to the midwifery team about pain management during pregnancy, but the services they run are for pregnancy related pain, like back pain etc. they didn’t believe there was a need for anything different.a

I look back and realise that pushing on and staying strong was the maternal instinct, and even now, despite a failed MVD and various medications, it is my love for my son that drives me. Your child will be an endless source of strength and while others with TN ask me how I cope with TN and a child, I would ask them, ‘how do YOU cope with TN without the love of a child to motivate you’. I’m pretty sure you’ll understand that entirely, the moment you hold your baby for the first time.

Is it your first child? It was my first and sadly we didn’t go on to try for more, but I haven’t responded well to medications or treatments and everyone is different. There are people living good lives, maintained on medication or having had a successful procedure, so please don’t compare yourself to others.

I wish you luck, for a safe and quick delivery and for you to get immediate care and attention once your little bundle has arrived.

Please update us when you can.

Nikki s

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Hello Nurse katie,

I am so sorry to hear what you are going through.When I was pregnant 7 yrs ago living with Tn for about 10 yrs at the time.The pain was so terrible that I could not bear anymore.I was not eating,miserable and in pain.By faith I had to take medicine..I took 300mg of trileptal under close supervision of my obygn and a high risk OBYGN of and on during the pregnancy and at the end I did not need meds.I was taking high doses of folic acid and omega gurd.(with vitamins I researched for the best vitamins I knew out there and Shaklee was the best for me.) I stayed on a diet of no flour or sugar for the most part..The pain went away or at least it was not so bad and everyday praying that my baby will be ok.I was able to eat and drink after medication which was very important to the baby.I saw the high risk doctor once and he said you are in very good shape and baby was doing wonderful so I never saw him again.I stayed under the care of my normal OBYGN and 9 months came and I had a beautiful baby girl and 2 years later a baby boy who are such joy to my heart.I thank God everyday for them and allowing me to have them.

I pray and hope that all goes well with you and baby!