trigeminal neuralgia and getting nowhere. Desperate.

[youknowitall]

I have trigeminal neuralgia, but am getting nowhere re treatment. I'm putting my son's needs above my own and breastfeeding him rather than taking medication and giving formula. I've read that some people take medication and still bf but my doctor isn't on board with this. He also isn't 100% sure it's TN and things it may be postherpetic neuralgia from shingles I had 18 or so months ago. I've therefore been told to stick it out. No medication. No check up. No scan. I'm only 28 and feel like my life is over because of this pain. I can go 3 weeks with nothing, but then I'll have 2 days of on and off agony. It's so unpredictable.

Can ANYONE help me? I'm so desperate.

I'm falling apart...

There are a number of medication options but I can't remember off the top of my head which ones are considered better when breast feeding. Also, for me acupuncture was a game changer. I got my first 10-15 sessions on the NHS.

However, i think you should push for a scan. Shingles or not, your age is a factor which means you need a scan as it could be a sign of other things.

Take the meds.

I found massage and acupuncture really helped. A couple of people at my Chiropractors clinic recommended the acupuncture and it really does help settle it down.

Other than that there really isn't anywhere to get with it, it's not widely understood and treatment is hit and miss.

Really you need to get the meds, I had this on and off for 4 years. Carbomezapine (sp?) sorted me right out. I wouldn’t have breastfed whilst taking it personally, but you need to prioritise yourself here. It will get better!

Take the meds, for God’s sake. They thought I had this a couple of years ago , the pain was unreal, there’s no way I could have dealt with it and functioned as a parent with that level of pain. You must be going out of your mind! I know it’s not very Mumsnet but sending love and a hug to you and any other M’netters with this. My GP and dentist never gave me a formal diagnosis and I did end up with a badly cracked tooth at the time which could have caused the pain, but they said that they couldn’t rule out TN until it happened again, which thank God it didn’t.

Your son will be fine, you really have to do this for yourself.

Take the meds. Your son will NOT suffer from being FF. In years to come, he won't say "Thank you for BF me". You won't get any awards for BF. Your son needs a happy mummy who is able to take care of him more than he needs breast milk. As long as he is being fed, his nutritional needs are being met. I've never experienced TN myself but my best mate has it and I've seen her curled up in a ball on the floor, crying her eyes out with pain. Honestly, you really shouldn't martyr yourself - your needs matter too you know.

Take the meds.

Happy Mum = Happy Baby.

Check with the breast feeding network on the safety of the meds. You can call them direct, they do their own studies outside of the generic "not suitable for bf" label which just means they didn't want to test it on bf mothers.

Formula feeding is also 100% OK. If it's not safe. Don't be a martyr. Get yourself better.

You have my sympathies! I feel really rough on carbamazepine but I get to the point where I'll do/take anything for some relief. I fortunately have episodes so get relief inbetween. I don't know how people who have it continuously cope. Carbamazepine does work for me at a fairly low dose so I'm one of the lucky ones as I know some people get no relief from medication.

Am following this thread as my Mum has been diagnosed with TN and it’s miserable for her. She has started taking carbamazepine which helps a little. I am helping her to explore other options, so the info on acupuncture is useful.

, OP. I hope you get some relief andnproper treatment and support soon. Xx

After over 10 years and multiple surgeries I’m finally clear of tn. But you won’t cope without the meds, you can’t be a mum if you break down and no longer want to live. What meds have they prescribed? Some work better for different people but the one helped me most was pregabalin, carbamazinepine is a standard one but I had side effects. Do you have someone to help with the baby’s care? Have you been to see a neurologist or pain specialist and discussed surgical options?

Take the men's, even if it means giving up FF. Your son needs you to be healthy and well more than he needs to be BF.

*meds