Trigeminal Neuralgia

[Legristta]

I've just been diagnosed (by a family member who is a medical professional of 30 years) with trigeminal neuralgia. I'm in agony. I can't get to docs until after Christmas is over. I'm breastfeeding so I can't take any medications anyway. I had planned on breastfeeding for 18 months minimum and this was (is) really important to me.

Can anyone advise on what I can do to ease pain until I can get to doctor? My family member isn't sure, but doesn't specialise in this area so said there could be something he doesn't know about.

I'm so, so lost. It's pain like I've never felt before...

Oh you poor thing, I've had this before, I was dribbling, couldn't see straight and the throbbing was awful. It didnt last long, maybe half an hour and I could only get hold of paracetamol. I put my face on a warm hot water bottle, don't go out in the cold. I'll have a look at their website for you. Are they sure this is what it is.

It could be something else so do get it checked out. If it is then they can give you medicines that affect nerve transmissions as well as pain relief. Phone 111

I agree, do call 111, they might be able to help you with diagnosis and pain relief, hope you feel better soon.

I had this when breastfeeding and the only drugs that work you'll need to get from a DR and they will be hesitant while you are breastfeeding. My GP prescribed high doses of ibuprofen while I was breastfeeding and whilst it didn't make me pain free it made things bearable and it took time for it to work. Get to your GP as soon as you can, how old are you? Younger people should be referred to a specialist and for a MRI to rule out other potential causes for the pain.

I second the hot water bottle, I found heat a good temporary relief. A scarf also helped to prevent drafts and other triggers.

OP, did you have another thread on this the other day? Sorry to hear that your relative thinks it could be TN as well.

The other thread mentioned the meds that are most effective. I would urge you to seek medical advice ASAP.

I feel your pain, literally! I was diagnosed with it in my first pregnancy, and it’s been two and a half years of scans, trying different drugs and meeting different neurologists.
Don’t quote me on this, but you might be ok to take carbamazepine while breastfeeding. I’m currently pregnant with my second, having a consultant-led pregnancy with the neurologist having said it’s ok to take up to a certain amount (alongside folate). So I would definitely talk it through with the doctor when you get to see them.

I'm only 27...

Your family member can't possibly be sure it's TN, especially if they don't specialise in neurology.

If you suspect you have it you need to see your own GP, get a referral to a neurologist, have an MRI and/or CT scan to check for compressions and start anti convulsants.

Nothing else will ease it.

But there are lots of other conditions and problems, some nerve related and some not, that mimic the symptoms. Please don't try and treat this just by what your family member is guessing.

I have a type of facial neuralgia but diagnosis took forever. I was referred to maxillo facial via my dentist, and had a load of tests, including an MRI. Sympathies, OP, it is miserable.

I’d recommend a hit water bottle as often as you can, if you have a scarf keep it wrapped round the painful area as much as you can. I go to bed with a hot water bottle on my pillow to ease it. I go t know if heat works for everyone but it’s worth a try. Sorry to hear you’re suffering do much

When you see a GP do push for a MRI.

Check out the Facebook group for TM for other tips for managing pain.

Hi OP. I'm 20. I Suffer from trigeminal neuralgia due to a brain tumor resting on that nerve. I really feel for you, I know its daunting to think you'll be living with the pain forever. I had to quit my job, couldn't look after my son properly most days, had weeks where I couldnt eat as moving my mouth caused pain. Honestly, before I had surgery to reduce the pressure the only thing that worked was morphine - not ideal when you have a young child and definitely not when breastfeeding. Now, I still get pain, now as bad as what it used to be but still the worst pain imaginable. I'm on co-codamol now, not sure if you can have that whilst breastfeeding either but it really helps me if it is something you could try. It helps me to lay with my eyes closed, but to be honest I just have to wait for the pain to go - it can be minutes or days. Avoiding cold weather, wearing ear buds (the ones that mould to my ear) to avoid the breeze etc getting in, laying as flat as possible and hot flannel on my face are the only non medication type things that help but they don't take away the pain unfortunately. I wish you the best :( x