to beg for surgery?

[Neero]

I've recently developed trigeminal neuralgia. It's agony and I've discussed medications with my gp. I'm reluctant to take them as I'm only 8 weeks since having my son. 3600 mg will zone me out hugely and I won't be able to look after my baby. I am breastfeeding and have no help around me. Nobody who could give me the support I needed. I'm in agony.

There is a decompression surgery you can have that has a fairly quick recovery time...

WIBU to ask for surgery? Or would a specialist likely tell me to sod off?

I want to be able to look after my baby and not be on high dose medications...

Look at the NHS website. There's no way in the world I'd consider any of those surgical options without having had a flipping good go with medications.

I have this as well. I’ve had it for 10 years. They will not offer surgery despite no medications controlling my symptoms

@Walkingthroughawall I completely respect that. I've been on gabapentin before and it was awful. I wasn't myself. It was just vile. I don't want to put myself through it again.

I guess theoretically I'd like to know if I could push for surgery without having tried medication, or if that's just completely bonkers?

I'm terrified medication won't work. This pain is awful and it really is worse than giving birth. If there's a surgery to fix it which there is, I would rather have that...

@HKAB18 I'm so sorry, it's the worst pain I've ever experienced...

The NICE guidelines say that surgery should be considered if medication doesn't control the pain, or if it causes side effects that aren't tolerated. So you shouldn't get surgery without trying the medication. A fear of a side effect isn't the same as actually having it.

But if you can try the medication - even if you need to book a babysitter to do so - then you can be considered for surgery.

I really doubt a decent surgeon would offer you surgery without having tried conservative measures first. And for good reason unfortunately. I think you probably have to accept going down the medication route and allowing a very slow build up to a therapeutic dose- you may get relief way below the top dose your GP is offering.

I personally had less side effects using pregablin and also find a small dose of amitriptyline is helpful for my nerve pain but I do absolutely understand that with a new baby this is a nightmare.

Do you have a partner to support you? Best wishes for your recovery.

@LosingLola I think I'm just scared one won't work, then another won't, and I'll end up feeling like a guinea pig which I did when I was on gabapentin, I got really depressed and would've chosen surgery over that any day.

This pain is so awful I feel like I could pull my entire cheek off and it would hurt less.

A friend had the surgery privately. Changed their life 100%. Try the meds. But don't accept the option of a lifetime of pain.

Thanks @MatildaTheCat - I do have a partner but he works full time and no way could afford not to. Even for a couple of weeks. He's got no leave left as he used it after his paternity.

I think I'm just scared. I need to care for my tiny baby. I want to breast feed him but can't with medication like that in my system.

I did think I was probably silly to think surgery could ever be the first point of call...

@SD1978 good for your friend (genuinely). I would bloody love to be able to afford private healthcare!

I was able to cope better on a higher dose of melatonin before pregnancy but it made me sleep a lot in night so couldn’t take it for baby. I’m trialling keppra. Tbh even if the meds subside it they won’t do surgery x

Not silly at all. When we are in awful pain we are won’t to grab any opportunity for the pain to go away but that isn’t a rational decision when the risks and benefits are weighed up hence the guidance re trying conservative therapies first.

If a private surgeon were to offer this when it is contrary to Nice guidelines I would run a mile. However donask for a specialist referral to someone who deals with TM all the time and ask for a plan. Just having a plan can help and whilst it’s crazy disappointing to be unable to feed your baby with the meds it’s all about balance again. They may help enough for you to cope again and, as I said before you can increase the dose in tiny increments to build tolerance to the side effects.

@HKAB18 I know someone who had it done (after only 8 months of trying medication) so it is possible. I just hate the idea of being at home either in pain, or on medication, and missing out on enjoying the first few months of DCs life. I've been on similar types of meds and they just made me so sick.

You could ask about radiosurgery - its just one treatment, is non invasive and only one day in hospital. Its worth asking about options if medications aren't working, you don't have to keep going on in severe pain

@CMOTDibbler I haven't tried any medications. I mean it might be the case that they work, but I know what the side effects can be like and know I won't be able to look after my baby properly.

Surely surgery wont be instantly available though, even if they did agree to it? It might be a quick recovery but it certainly wont be a quick surgery date, I'd think.
You'll be able to start trying the medication straight away, and it might work for you?

@StormTreader you're right. I think I'm just upset that it's reared it's ugly head when my DS is so tiny. Deep down I know it doesn't work like that but was hopeful that someone would come along and tell me otherwise!

I feel your pain, nerve pain can make you feel desperate. Gabapentin made me so sick I couldn’t stand, and the other one (lyrica I think was less vomit inducing but made me feel very faint). I had some success with amytripiline. Not sure how it is with breastfeeding and it made me dozy initially, but not non-functional. In the end, I did have a decompression (superficial nerve in my leg). It’s not a complete answer but I would say the pain has reduced by 75%.

I have it bilaterally, all 3 branches, and have since I was 14. 20 years later, I promise you that you do get used to the meds, the side effects fade over time and other than flare ups, i can still manage to function.
I personally have avoided the surgery and Botox, because it’s a huge risk to take when it might not work.

I had this and would have tried anything to make it better,if your pain is like mine was looking after a baby is compromised anyway so you have nothing to loose

I'd say try different medications first. That's a bit rich considering I only took one and when the efficacy of that started to diminish while the side effects ramped up I refused to try another (would have been moving from carbemazepine to gabapentin) however I took another route. I'd been having acupuncture for several years which enabled me to lower the dosage considerably (to about 25% of the maximum I had been on) and I continued with this plus meditation and other pain management techniques once I came off the medication. I admit I was scared of the side effects of gabapentin having struggled with the long term (and now permanent) side effects of carbamazepine. But... the potential risks of the different surgeries are no easy thing either. The prospect of being worse off pain wise when TN already had me in absolute pieces is too much for me.

I can only sympathise with how this impacts on life with a little one. I'm currently trying to conceive and I am worried about flare ups and how I could manage them.

Have you spoken to TNA UK?

Incidentally amytriptaline messed me up. If you try it start on a very low dose - the amount the GP prescribed for me I was an utter zombie.

When I first started gabapentin it was horrible. Now on 2700mg a day and 30mg amitriptline and I have no side effects at all. Once my body got used to it, it did take a month or two but was worth it.

What pain relief have you tied so far? Are you taking anything at all as not clear from your OP?

Pregabalin and gabapentin are apparently ok with breastfeeding. It's a common misconception that all analgesia and breastfeeding don't mix. There's relatively few drugs that aren't considered safe in bf. Good job as otherwise I'd be in agony every day from endometriosis, a back in spasm, chronic sinusitis, and knee cysts.

I'd ask for a referral to the pain clinic for more specialist advice.

Hope you get relief.