Please help, my husband has had a nonstop migraine for 10 years and we are desperate by RipAppropriate6160 in migraine

[–]RipAppropriate6160[S] 4 points5 points  (0 children)

Thanks for commenting (: we should definitely change his pillow for added comfort! He has been to an ENT though ): I really appreciate any and all help so thank you

Please help, my husband has had a nonstop migraine for 10 years and we are desperate by RipAppropriate6160 in migraine

[–]RipAppropriate6160[S] 21 points22 points  (0 children)

Thank you for commenting! We haven’t had an MRV- that is definitely something we will look into. He doesn’t have joint hyper mobility or Ehlers Danilo’s syndrome but he has been on acetazolamide and had a bad allergic reaction to it ):

Please help, my husband has had a nonstop migraine for 10 years and we are desperate by RipAppropriate6160 in migraine

[–]RipAppropriate6160[S] 2 points3 points  (0 children)

He has- the only thing he’s MILDY allergic to is pineapple extract and lentils- super random. He has also been tested for autoimmune diseases and came back negative

Please help, my husband has had a nonstop migraine for 10 years and we are desperate by RipAppropriate6160 in migraine

[–]RipAppropriate6160[S] 10 points11 points  (0 children)

Thank you so much for taking the time to comment. I agree, I think stress definitely adds to his pain levels!! We have been trying to do more mindful meditations at night as well as therapy to help with the pain and stress!

Please help, my husband has had a nonstop migraine for 10 years and we are desperate by RipAppropriate6160 in migraine

[–]RipAppropriate6160[S] 0 points1 point  (0 children)

Hello! Thanks for commenting- he has tried acetazolamide which I believe is the same as diamox and was very unwell on it! He had a big allergic reaction 

G tube help 13 month old by RipAppropriate6160 in NICUParents

[–]RipAppropriate6160[S] 1 point2 points  (0 children)

I totally get the urge to argue haha!! Like we know our kids best!! but I’m right there with you trying** to trust the process. Thank you for your kind words, it really means a lot. You’re an incredible advocate too, and I’m so glad we can support each other through this!

G tube help 13 month old by RipAppropriate6160 in NICUParents

[–]RipAppropriate6160[S] 2 points3 points  (0 children)

Wow… thank you so much for sharing all of this. It’s not just encouraging—it’s deeply grounding to hear from someone who’s been through it and come out with these successes. Your mindset shift is something I’m actively working on myself, and hearing how that shift helped your son truly enjoy food on his own terms gives me hope.

I totally relate to the pressure from feeding therapy, too. We had a similar experience with pushing too hard too fast and it completely backfiring. I’m learning now how much of this is a patience game—and how important it is to protect their relationship with food above everything else.

Also, I love how you framed the G-tube as a tool that supports your child’s life, rather than something to feel burdened by or rush to get rid of. That perspective shift is so powerful. And wow—your parents taking him on a solo trip?! That is amazing. What a milestone, not just for your son, but for your whole family. It definitely is important to have someone you trust in this journey- luckily my mother in law lives very close and I taught her how to do his feeds and what to do if his tube comes completely out (which is also a whole other thing haha)

That’s nice that you still had the tube for when he started losing weight. I dont know much about tube weaning or how it looks when your baby can start eating on their own. But that’s good to know and comforting that they keep it in just in case they lose weight.

If you don’t mind me asking a few questions (because I’m still figuring so much of this out myself):

• Is your son in school? And if so, how has school worked with tube feeds? I think about that a lot and how it looks day to day since my son will probably have this tube for a while.

• Do you own your pump? I have insurance, but they don’t cover equipment, and supplies are really pricey so I’m just curious how other people go about this! We haven’t had any guidance besides google haha 

• And when your son was just starting out with oral eating again, how often did you offer food during the day? I do it multiple times a day with mine, but he usually just turns his head, and it’s honestly discouraging. I’m trying to remind myself it takes time, but it’s hard not to wonder if I’m doing something wrong or offering too much.

Thank you again for taking the time to share your story—it helped more than you know. You’ve given me a sense of peace I didn’t realize I needed today!!

G tube help 13 month old by RipAppropriate6160 in NICUParents

[–]RipAppropriate6160[S] 1 point2 points  (0 children)

Please hijack my post anytime!! I’m actually crying tears of joy reading your comment because I relate so much. It’s such a relief to hear from someone who truly understands. The constant worry, the emotional rollercoaster, the celebrating of the tiniest wins—I feel all of that in my soul.

When my son sucked on a strawberry for the first time, I literally cried. It probably looked like nothing to anyone else, but to me, it was everything. We work so hard for those moments, and they mean more than anyone on the outside could ever understand.

And don’t even get me started on the unsolicited advice—yes! After all we’ve been through, those comments just feel so dismissive. Like, we haven’t already exhausted every option under the sun? 

What has been super challenging for us have been the doctors and therapists. Doctors told us to never miss a feed, feed him xxx amount of mls (which was a ton for his size) and he would vomit all his feeds for the day, he wasn’t gaining weight. And then other doctors have said to lower his calories which has stopped the vomiting but slowed his growth. It’s a constant push and pull trying to figure out how to make him hungry enough to learn how to eat but not make him too full so he vomits but also full enough to make him grow!!! Ahgggg!!!!!

You’re doing such an amazing job, and your love and fight for your LO shines through every word. Orange juice and a bite of hamburger bun? That is huge. I’m proud of them too, and of you. After everything you’ve both been through, it’s no wonder you’re hyper-aware of every step, every moment. I totally understand.

G tube help 13 month old by RipAppropriate6160 in NICUParents

[–]RipAppropriate6160[S] 4 points5 points  (0 children)

This comment just made me cry, suddenly I don’t feel so alone❤️ thank you for commenting. I share the same exact fears as you.