Starting a family?

General General TN & GPN (Old Site)
1

Hello everyone, thank you for your warm welcome to the site.

So my husband was just diagnosed with TN after having his first episode so painful it could not be mistaken for a migraine. I know that means we’re luckier then most who have to wait years for a diagnosis and I’m grateful.

Here’s the dilemma: we’ve been trying to get pregnant for the last 6 months. We had a miscarraige about a year ago and it made us realize how much we really want a family. We decided to take a break from trying until we’re sure the tegritol works best for him. What I’m wondering is how TN effects children of parents with TN? How has TN effected your families?

2

Tegretol and other meds have side effects. Go to askapatient.com to look at side effects for any meds offered.

I could not tolerate the cognitive "dis"abiilities the meds caused. Could not work. Some can.

Ask doctor for Prescription Lidocaine patches or oral solution ASAP -- helps to take less meds

keep in mind that there are remissions for most - but some of us don't want to keep on the merry-go-round and find the best surgeon and go for that.

This disease is very isolating - it is invisible and nobody understands. It causes divorce sometimes. Probably more effects on kids if it is the mom with TN who is primary caregiver.

You must understand the most important thing you both/one of you/ can do is research extensively on what is best for you. Counseling and pain mangagement doctors can help in worst of times. Ask questions here and at the site:

http://www.fpa-support.org/

Most peope who are happily pain controlled are not posting on these boards. You have to see that the misery portrayed on these sites are for those in such need right now..... with a sprinkling of us doing just okay, and another sprinkling of us who are not in pain at all for now.

I also suggest an in-person support group if needed in your area if possible - and a support system of family members/friends. If it is just the two of you....it will be harder.

These are just some things I would now know to consider before starting a family.

There is hope, and the hope is in your time invested in research and your level of constant compassion as a spouse!

It really took a "medium" toll on my marriage, but we made it through. It was my depression from the pain, depression for not being able to get a job and be happy with myself, and the fact that I couldn't even remember things like my dogs name because of meds. It was like early alzheimers, and I'm 40 something.

My kids - one is out of the nest - and the teen left here was not effected too badly, but teens are in their own world anyway!

I, like your hubby was dx early, and within 12 months found myself having brain surgery with one of the very top docs in the country. I flew from MO to MI to get rid of this TN crap! 9 months later considering myself lucky.

BUT -- there is also a percentage that live on meds fine forever, and a percentage that have 2+ surgeries. Gotta see the glass half full when you can. It used to be called the Suicide Disease. That's how bad it can feel if left untreated.

Please know that you might be horrified at my candor, but I wanted honesty and knowledge right out the gate and I hope it helps. My last tip is to have your hubby's doctor, write a note of his diagnosis, so that if he ever has to go to an ER and get narcotics (which don't last long for pain) - they will not treat him as a drug seeker.

Read all you can and Keep Posting!

Kimberly

3

Thank you very much for your response. I appreciate your candor so don’t worry, he see’s the neurologist for the first time tomarrow so I’ll mention the lidocaine to Augie and see what he says. So far he doesn’t have any serious side effects and went back to work last night. Dry mouth and grogginess are the worst of it right now, but I’ll keep an eye out for the other symptoms you mentioned. The hard part will be convincing him to let me take care of him on the occasions he needs help.

Thank you again.

4

Hi Nicole , I just wanted to let you know my husband has been dx with tn for over 12 years and had it for a few more than that. It flares up every 12-24 months and lasts a week to 10 days. He only takes tegratol during this time. He hasn’t missed a day of work and it hasnt become worse so far. As a spouse I notice he is quieter and will go to bed early . Our children now 9 and 13 haven’t been affected much. Last flare up 2 years ago they did chime in with me reminding him to take his tegratol. As a family it hasn’t really impacted on us except I am watchful for depression and other effects of tn . I do all the research where he doesn’t want to know. Ihave planned ahead with insurance and mindful of finances. hope your husband is at least as well as mine . If you want a child and are concerned how you will manage if your husband is unwell , set up some other supports with family or church and take any offers of assistance . I do believe it takes a villlage to raise a child , sometimes we have to create or look for that villlage . Best wishes

5

I had TN--was diagnosed at age 25 and had an MVD at age 31. My biggest fear was that I would not be able to have children. I can tell you that in the state I was in, having a family would have been very, very difficult. I just celebrated my daughter's first birthday, 3 years after my MVD.

The disease will get worse, if it is caused by an irritant to the nerve. My best advice is to go find a neurosurgeon that you trust and like, get a thin slice MRI, and see if there is a surgical option you can take now. The earlier you take care of it, the better the odds of a full recovery from the TN. Good luck--I'm happy to talk more if you want! Just email me...

Hang in there. There is so much hope!
Kate