Vasospasms

[lilacjellybean]

Hoping someone with experience of vasospasms can help please!
My son is 10 weeks old and had his tongue tie revised when he was about a week and a half old. He was managing to latch fine even with the tie going right to the front and there was no pain but not sure how well he was transferring milk (he's my first baby). He was also in NICU for his first 3 days with low blood sugars and was tube fed, when I was eventually allowed to bf instead (long story) his blood sugars stabilised.
Anyway, we had it revised when we got home and it took him a while to learn to latch again (we finger fed with tube in that time). He lost weight and had trouble gaining so we were advised to give formula top ups in a bottle (he only had two in the end as he threw them back up but from there we gave his EBM in a bottle too).
He eventually learned to latch again and has gained weight really well since then (he only has a bottle of EBM once or twice a day now to give me a break, otherwise it's all direct from the source).
The only problem is the pain and the vasospasms! It started with just being pain when he latched which progressed to pain through the whole feeds. Then I started to get awful pain between feeds. About 15 mins to half an hour after he's finished a feed my nipples will go white and the pain starts.
We went to a breastfeeding clinic and I was told these were vasospasms and we looked at improving his latch (nipples were coming out lipstick shaped or flat).
We've improved the latch to the point where the nipples only come out with a slight crease and there's only a bit of pain at the start of a feed but the vasospasms still happen and are awful.
We've been back to the LC who did the TT revision and she said there was some scar tissue but revising again may make things worse. She suggested seeing an oesthopath and we've had one session and have more booked in the new year. I've also been using heat pads between feeds which maybe help a little but I think they squash my nipple a bit which also causes pain. I also take extra vitamin B on top of a breastfeeding multivitamin.
The only thing that really helps is taking ibuprofen but that's not a long term solution.
I know that's long so thanks for reading if you've got this far. I really want to continue breastfeeding and am desperate for anything that will help!!

TLDR: Vasospasms are making bfing a bit of a nightmare, any suggestions?

I had vasospasms along with various other things though not as complex as your experience.

Saw a breastfeeding counsellor who suggested tea as it can act as vaso dilator plus the hot drink helps. Not sure if was psychological but seemed to help me, including decaf tea.

Also found that things improved with time simply as ds got better at feeding and his mouth got bigger. So ibuprofen may not be a long term solution butay hepp get you through a few more weeks while he grows.

Well done for getting this far

Oh and she suggested feeding often and 'early' ie before dc gets too hungry. They latch less ferociously so helps minimise pain on recovering nipples.

Thanks blossombath! I'll give the tea a try. I'm hoping things with improve as he gets older, the actual feeding pain isn't as bad as it was and I think that's down to him getting a bit bigger.
I try to feed whenever he shows any signs of hunger, he's a frequent (and enthusiastic) feeder anyway!

I can't offer any advice but lots of sympathy. I have very similar pain and lipstick nipples. Just down to poor latch, tt division has been done twice now. It has slightly improved in the last few weeks (now 12 weeks) so I'm using pain relief as and when necessary. Just hoping things improve over time. Well done for persevering, sadly I'm not enjoying feeding at all this time (dc2) if this was dc1 I would have given up a long time ago!

Thanks sun! I think I'm just persevering through stubbornness at this point. I'm also a bit scared of using formula as he puked it up the last time (and also a lot in NICU). Plus he seems so happy breastfeeding and I think at this point stopping would be quite difficult anyway. Just got to hope it gets better!

Hi Lilac, I'm going through the same thing with my month old DS. The pain & skin blanching started 2 weeks ago. Community midwife thought it was Raynaud's syndrome of the nipple & GP confirmed the diagnosis. I experience sharp pain in both boobs when my milk starts to flow. I'm now taking nifedipine every day and it's helping me to reduce the symptoms. Breastfeeding is still sometimes painful but that's just normal for me. So far it's bearable (I've taken 1 or 2 ibuprofen every 3 or 4 days) and I know our latch is good. DS is content and piling on weight! Heat pads before/during/after feeds are a godsend - try tucking one next to your non feeding boob when baby is latched onto the feeding boob. Above all, stay warm! And take care when moving between extremes of temperature (eg, stepping out of the shower.) With my first DC, I stopped bf after a few weeks and I now realise that my LLL adviser missed the signs that there was a simple ubderlying cause - she was obsessed with the idea that my DS had a tongue tie, which none of the professional medics could find. Anxiety can make the symptoms worse so I'm doing all I can to relax! Not sure how long bf will last this time and whether it will simply become too painful again. Each feed is a bonus and I'll be content if and when we need to move to bottles/formula milk. That worked out well for us last time. It's just reassuring to know that there's a reason bf is sometimes painful for me - I'm not weird or simply doing it wrong (as I felt last time round.) It's just the way I'm made.

easterbaby, don't rule out tongue tie just because none of the professionals could find it. Most of them know sweet FA about tongue tie, especially posterior ones.

There is a lengthy thread on here with people who were told by all sorts of professionals that there was no tongue tie, only to find out later that yes, actually there was.

I think somebody on that thread saw 7 HCPs before they found somebody who knew what they were doing

Thanks for the tips easterbaby! I've been thinking about seeing my GP but wasn't sure there was anything she could do but will go speak to her during the week if I can

Mawbroon, I'm sure you're right about the difficulty in diagnosing some tongue ties. The mum next to me in the postnatal ward (who was a GP in her day job) got an official diagnosis and had a same day op on her LO. They were doing brilliantly with feeding when they left a few days later! Quick diagnosis seemed to be the key. My instincts are clear that TT is not an issue for us, and wasn't last time.

Lilac, do push to see your GP asap as things improved very quickly once I was taking meds. I'm relaxed about the potential need to stay on nifedipine until we give up bf. This type of Raynaud's isn't commonly seen by GPs - I'm guessing most mums give up with a vague sense that their latch is poor. If you haven't got Raynaud's yourself, it will be hard to understand how searing the pain can be, and how that might persuade someone else to stop bf. I read on the NHS website that millions of Brits have some form of Raynaud's, so I wonder how common this can be? Good luck, Lilac - hang in there. You're not alone. x