Spilling the FULL TEA: Why I Left YouTube and ABRUPTLY STOPPED Patching my BRAIN FLUID LEAK in 2024

[@kristimitchell5749]

I've been watching you for years, really appreciate you laying out the details. You've been a good example to me for what self-advocacy looks like, and are the reason why I fired several doctors until I found some that listen, and I have seen marked improvements because of that.

[@MommingwithMigraine]

Awesome! Thank you! I'm so stoked you're finding your voice. It really brings some meaning to my pain. Thanks for stopping by =)

[@carriehollyland3596]

​@@MommingwithMigraine sorry, don't mean to piggy back off this comment, but for some reason you've wouldn't let me leave my own comment. I just have a question, of u don't mind me asking. For ur migraines have u ever tried emgality shots for ur migraines? Only reason I am asking is cause I too suffer from migraines, and due to a recent neck injury that strained my muscles at the base of my skull as well as damaged an artery in my neck, my migraines have suddenly become much worse. The doc wants me to try emgality shots next. And I am honestly just nervous about it, due to really not liking needles at all. I also suffer from vasovagal episodes and am concerned that it may also set off an episode for me. So just curious if u have ever tried those shots and if so, what was ur thoughts on them, like did it work for u, is it a painful type shot, etc...?

[@wanderandwonder121]

After being ill for years, I came across a video of yours where you showed yourself doing a stand test at home and showing how much your POTS had improved. I had been praying asking God what was wrong with me, and whenever I would, I’d always have this feeling it had something to do with my heart. I had a pulse oximeter at home and did a stand test at home after seeing your video. Then at the GP. Then at the cardiologist. And it turns out, I also have POTS. I have a degree in neuroscience and I also believe in God. I’m thankful that you shared your own journey and that God used it to help me too. Thanks Jen ❤

[@christinabellamoore]

I too have POTS, sending lots of love to you xx

[@carolann811]

I'm an atheist with a side of something I don't post publicly very often. Whether you call this God or the Universe or something else, when things like this happen, listening to your gut or your heart or whatever is usually the right thing to do. It's also good that you're documenting this, not for us, but for yourself. At some point in the future how amazingly powerful this was or the details may fade a bit. Having this to watch again will always keep this front and center as how amazing it really is.

[@MommingwithMigraine]

Aww yes I appreciate this comment so much. I know the gut feeling! It appears God programmed us with a way to hear even when we aren't listening. A universal sensation, for all humans! That's not coincidence, it's design! Fascinating when you dig more, which I encourage you to do. Cheers, friend!

[@Chelle8847]

I really love this comment. Even tho you're an atheist, you can see and appreciate other people's beliefs and show respect, as well as coming up with positive spin on Jen documenting all this. This is exactly how I want to be. I'm not sure where I stand when it comes to God etc right now, but I want to see all sides and not commit to anything right now, I grew up with super strict Christian parents and I've had to unlearn a lot of stuff... But right now I'm trying to be as open and accepting of everyone as I possibly can! ❤❤

[@venusunmasked]

@@Chelle8847 you don't have to be anything. 🙂 I find that not having a box to put myself in or a border/ boundary , allows me to see everything clearly. I belong to none, I am my own and I love all. Love is my spirituality and it's not scary or lonely here.

[@shawnahaddan3674]

Jen, look at the number of scientists that believe in God and still work in their fields. You are not alone. You can both be science based and believe in God.

[@MommingwithMigraine]

God and science are PERFECTLY aligned! "The first gulp from the glass of natural sciences will make you an atheist, but at the bottom of the glass God is waiting for you." - Werner Heisenberg

[@juliabrown5948]

​@@MommingwithMigrainewow I love that quote. Thank you for sharing

[@sarahstyles6859]

Science is us discovering Gods creation after all

[@Kijahlovex]

God created and gave us science ❤

[@virshacarter6751]

@@MommingwithMigraine ❤❤❤❤❤

[@ElijahPerrin80]

Thank you CEFALY for bringing Jen back to us :) and we always knew you would be back. Life happens and god changes lives overnight, I am happy you listened.

[@ElijahPerrin80]

John 4:18 :) Thank you for sharing your love.

[@MommingwithMigraine]

💜@@ElijahPerrin80 1 John 4:18... VERY different from John 4:18 lol!!! But yes! Perfect love casts out fear!

[@juliabrown5948]

​@@MommingwithMigrainehaha 😂yes you are so right .FIRST John 4:18!

[@Azariane]

HAHAHA I love that!! My parents told me a (joke? Or actual real life story??) about a pastor who sent a telegram to be read at someone's wedding. The 1 was dropped, so it was John 4:18 that was read to the newlyweds. And that... was followed by a _very_ awkward moment 😂😂😂

[@MrHaywee22]

Jen I’m so happy to hear your update and that you trusted your gut. Today I cancelled my first Myleogram and blood patch that I just drove across the country for because I had a gut-wrenching feeling that it wasn’t the right move (my mom has arachnoiditis and I’m afraid I’m genetically predisposed). I had been quite upset all evening questioning if I had made the right move right when you posted this. Thank you for posting. You can send images to Dr. Tennant who is an arachnoiditis expert. He is no longer practicing but if you’re looking for an opinion that’s one option

[@nonemptystring7463]

I've been meaning to say this on IG, but never got to it, so I might as well just do it here. Jen, you look amazing these past couple of months. The hair cut suits you really well, but there's so much more color in your face, you look healthier and happier than we've ever seen you I think. Also, the way you talk about your journey with faith is really beautiful. Being an agnostic at best, I don't mind it at all :)

[@kimbystone]

Jen, this gave me chills! It makes me so happy to hear about your recent faith in God and that you're taking Him at His word. God and science absolutely do go together! Thank you for sharing and being vulnerable ❤

[@briannahmcdaniel]

Please don't hesitate sharing your faith and how God has been working in your life! We are called to spread the Gospel so that others can come to know him! Keep up the great work!

[@MommingwithMigraine]

Thank you for the nudge! You're right!!

[@virshacarter6751]

@@MommingwithMigraine ❤ this

[@Azariane]

YES!!! Love this ❤❤❤

[@rivkawiersma1243]

Good to hear from you again, Jen! Missed you!

[@Moondragon1821]

I check back to this page every so often. Happy to see an update and can't wait to see what you've been keeping from us lol.

[@MommingwithMigraine]

You are tooooooo sweet. I'm thinking about this CONSTANTLY I can't wait to get it up! I have TWO surprises now!! So pumped!

[@emilygraham2460]

Happy you’re back but happy you took the break you needed. ❤ looking forward to pt 2 🤗✨

[@MommingwithMigraine]

Yay! Thank you! I want to be regular again SO BADLY. We're clooooose to being able to manage it as a family. I love that you're right here ready for it all!

[@emilygraham2460]

@@MommingwithMigraine regular is a relative term 💕 every day is a new and amazing day!

[@venusunmasked]

Hey Jen , everything you mentioned here today is very common for EDS. I'm a leaker and I have IIH . My niece had a tethered cord from birth. She also had surgery on both Achilles tendons. Once she fixed the tethered cord, she did great. Now she's an athlete. Please look into EDS and all of its comorbidities. It may not have been caused by an injury.

[@sarag6857]

I was thinking the same thing as well.

[@TeamTimmons]

I got way too excited when I got the notification that you had uploaded a video. 😅 I've been watching you for so long, and you're actually the reason I decided to go with a golden retriever when choosing my SD breed. Watching all of your older videos and seeing how wonderful Buddy is gives me hope that my girl will be that wonderful once she gets out of her insane puppy stage. 😅 She's 8 months old now and really is doing great, but goodness. She can be a lot sometimes. She's already alerting to my high blood pressure and lets me know before I have an "episode" with my heart, though, so that's awesome. She randomly started alerting on her own a couple of months ago and has only gotten better. She's nowhere near ready for public access, though, but we'll get there eventually. I loved hearing you talk about your faith and your relationship with God. My husband and I are also in different science fields, and it honestly has strengthened our faith. God and science truly do go hand in hand. My apologies for rambling so much. I'm looking forward to any future videos you're able to post (take your time and don't feel pressured to post when life gets hectic) and I'm also looking forward to meeting you in Heaven one day. ❤

[@lifewillbebetter2027]

Yes, I have been through every diagnosis you mentioned. I am 63 and have seen all the "EDS expert neurosurgeons", and after three horrible surgeries, I am not better. I cannot tell you where to go to get help, but I can certainly offer advice on where NOT to go. God Bless You, dear one.

[@cadeheinberg3047]

You mean Henderson, Bolognese, Patel, etc?

[@lifewillbebetter2027]

@@cadeheinberg3047 I have not seen Dr. Patel.

[@kellyquinn1468]

💜💜💜 Follow your instincts and don’t be apologetic. This is your journey, we are just along for the ride and any nuggets that you can help us with. Thank you for coming back on, sharing, and caring.. 💜💜💜

[@kimdracula8229]

Hey Jen. I am a just a random who came upon your channel at some point a while ago and have been following your journey. Thank you for being vulnerable! I consider myself agnostic but I am really happy to hear about your experiences. I too am science minded but I also find it interesting hearing about people unexpectedly experiencing 'something else'; whether it is energy, the universe or something else. It's awesome you are sharing this even though you are wary. I am so happy for you that things have been going so well. If you want reassurance from this random viewer from Australia; keep doing what you're doing. Sending supportive thoughts your way :)

[@awalterscheid3741]

Thank you so much for sharing your testimony! It is so important to be reminded that God and science do fit together in such a beautiful and intricate way!

[@aawillma]

After reading The Gift of Fear I believe that we are subconciously knowledgeable of things we do not have access to conciously. People call it a bunch of things, instinct, vibes, a higher power/holy spirit, gut feelings, etc. The urge to disregard this feeling or voice is strong because it is usually pushing you to do something that consciously seems like an "illogical" decision. This is why trust and faith feel so hard yet important for stuff like this. I personally don't think its a deity or supernatural force that is orchestrating this, but I obviously don't have any proof it isn’t. 😊

[@grassfolk]

Ooh that book sounds interesting, I absolutely have this perspective, it will be interesting to explore. Thanks for commenting!

[@DyreElsker78]

I`m thankful for everything you are sharing, and just really happy to see you back here, and your updates

[@MrsRepairTech]

Praying for you! Philippians 4:6-7: "Be anxious for nothing, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

[@juliabrown5948]

One of my very favorite verses, I memorized it in high school!

[@franlats0705]

We all love being here to support you, i am also a scientific person but i also have faith. I am just glad that you didnt disappeared from yt forever. 💜

[@hollyberrytea]

I found you about a month ago and your videos have helped a lot! I'm glad you're back. Good to see you! Thank you for catching us up. :) And thank you for opening up to us.

[@rhi963]

I missed your little guitar intro song so much, I am so happy you're back!

[@rhi963]

I would love to pay for a members video where we can get all the god/woo-woo stuff uncensored! a lot of us are also extremely scientific and evidence based but also have had some unexplained and miraculous things happen to us, and would not judge you for anything because we know how it feels to be judged for sharing that kind of experience. Being scientific doesn't mean we (the greater scientific community) are close minded or naive to the unexplainable, only that we are able to gauge the amount of trust and action we should put into and behind the explainable and the not. Only good can come from us humans (ESPECIALLY the honest and scientific humans) sharing what experience comes from trusting our inner knowing, maybe then we can begin to know and understand intuition as a thing, an explainable thing. Maybe then we can take it out of the taboo box its in and remove it from the rest of the spiritual wishwash people automatically right off.

[@MommingwithMigraine]

Aww I appreciate all this so much! That's an interesting thought. It's been on my mind to get back into Patreon for exactly that reason - I was a lot more unfiltered in there. Hmmmmm. I'll be thinking on this =) Specific curiosities? I think even youtube could use a Q&A on this.

[@ellenmontague8425]

Of course sending all the love your way! Been following your journey since before you found out about CSFL and since then I’ve had my own (complication from my epidural when I had my kiddo), and while luckily 1 patch was all I needed I feel you ❤ So glad to see your shining face back on YT, thank you for all you do for the community!

[@katelynnwalker2568]

Welcome back Jen! Please know that you never have to apologize to us. ❤I'm a Christian, and sometimes God does things that don't always make sense. Sometimes God reveals the reason, and sometimes not. I've been there. I say this not to discourage you but rather to encourage you that no matter what happens, God is working and there's a reason and a purpose for what He does. I'm excited to hear about your growing relationship with God and I will be praying for you as this relationship grows.

[@Azariane]

Yes!! I'll be praying too ❤

[@mylifewithmarmalade4624]

I’m so glad it seems you are doing better in many ways. I’m not religious but I do believe in following your intuition, and sometimes taking your foot off the gas and coasting along for a bit is a very prudent course of action. Having worked in hospice I have seen a lot of people improve when we stop trying to “fix” them at all costs, and start re-evaluating what is actually worthwhile and helping and what is just adding misery. So too in times when I have had some really difficult personal times, deciding I’m just going to exist for a bit, take care of myself, and not try to “fix” anything for a few days or weeks has been when good solutions become easy to see. I think just letting go of the prescribed plan, looking at it with fresh eyes as just what it is, not what you want it to be, allows us the mental and emotional space to finally notice what has been there all along. The teathered cord idea definitely makes some sense, and could definitely explain a lot for you. I think medicine is starting to catch on to how much seemingly small things from years ago can impact health now. There are tons of theories now about how everything from POTS to ME to IBS to cancer might be driven by seemingly minor viral infections from decades ago. I’m firmly convinced all my migraine and gut issues are somehow tied to a case of very severe heat exhaustion I had about a decade ago. Unfortunately science likes clear obvious correlations. They want the ground shaking X happened and Y started the next day. But the older I get the more I don’t think bodies work like that. I think the body is very good at coping and hiding a lot. The body hides the insults until it can’t anymore, and it isn’t until years later that we look back and go, hmm yeah I started having this subtle issue way back when, and I didn’t think anything of it at the time. Science will catch up, but it takes loads more data and therefore time to “prove” the more subtle correlations.

[@SnowySpiritRuby]

You mentioned tongue tie release - it looks like we might try to get mine done over Christmas (probably between Christmas and New Year's, or maybe right after New Year's, depending on scheduling). I have to confirm with the place I'm considering getting it done at whether they can make sure that I will have zero mercury exposure in the building (a dentist who also does tongue tie releases), since I'm still recovering from mercury poisoning. If they can't guarantee it, I'll ask the other place whether they have a myofunctional therapist there (couldn't find that info online), because you said that was an important aspect. And my Cefaly is working amazingly! Haven't had a real migraine in almost 3 weeks (a nice change after getting something like 30-40 so far this year), and it usually puts me to sleep (I do it at night in bed - the sedative effect is no joke!), and I was up to full intensity by the end of the second week with it. I never would have been able to afford it otherwise, and I'm eternally grateful, so thank you for partnering with them for the giveaway.

[@sheilaheinrich2656]

So happy to hear you and see you looking so happy, well and mobile. It sounds like you've made a lot of progress in your health journey, Jen. Best wishes!

[@crowsrose8789]

This is gonna be a bit of a long comment, and I don't normally leave comments like this, but I feel called to. This is my first time seeing your content. It came up in my recommended feed randomly, and I felt compelled to watch it. I haven't heard of the contions you talked about before watching this video so I don't know fully what you're going through or have been through, but I have had bad bouts of health issues especially over the last 4 or so years, and I wouldn't have been able to get through them without God. Listening to God can be terrifying and confusing at times, but I've found each time I have listened that it's turned out for the better. Something my youth pastor used to tell us was that, "God never said it would be easy, but he did say it would be worth it." God is with you every step of the way, from the darkest valley to the brightest mountain top, even if we don't feel Him, and it's something that I cling to when going through times of bad health. While I feel as though my comment isn't as eloquent as I want it to be, or maybe worded as perfectly as I would want it to be, I hope that even a slight bit of encouragement is received through it.❤

[@abbyz1443]

Thank you for being so open with your experience with God even though it made you feel a bit uncomfortable for you. Also I do watch regularly but I love learning from you and about you. Thank you soo much.

[@joeastham0]

Cool that you're staying open minded. Keep healthy

[@cheyenneantonaci-desimeis6381]

Halleluja 🎉 love this side of you! More of this!

[@MommingwithMigraine]

Yay! Thank you! Amen!

[@5bubblesz]

Thank you for sharing your experience! It is a lot to go through! I came to your channel a long time ago, to see you go through everything and to now is showing us that your on the right path. My personal experience of my journey is just starting. It’s hard and painful, I have hiatal hernia, and over adjustment from a chiropractor. Both have been crazy! My spine moves and pinches my nerves and I take medicine to help but it hurts my stomach then gives me a acid feeling headache. 🥴 so thank you for sharing your journeys! I wish you the best and your videos give me hope that we can get through the dark times and be able to be in the light. 🥰

[@user-cv2jl7zy5o]

Wow! Thanks for sharing! I’ve been a mystery for many years and have really gotten nowhere… I broke my tailbone traumatically when I was young and haven’t quite been the same since. Hmmm… something to think about and research. Thanks again.

[@jhawkes6753]

I dealt with Migraines since I was 8. Recently dealt with my own Divine Intervention and I’ve come to realize my teeth, pelvis and feet affect each other. I deal with severe neck pain and numbness in my left leg. My pelvis tips forward and tilted, my tongue did not sick to the roof of my mouth. I am now working with a posture restoration specialist. I have had to teach myself to breathe through my nose, tongue on the roof of my mouth, I have inserts for my shoes for grounding and exercises to help with my posture. Teeth should touch equally when you bite. Recently started food allergies, once I stay clear of MSG it’s helped with less migraines. Hope you find answers and figure out the root cause of all your symptoms. ❤️

[@caitlinhanson8631]

Im so glad to hear about your growing relationship with God, and his work in your life! It's interesting to hear someone else talk about arachnoiditis, my father has it from a back surgery he received, and nobody seems to have ever heard of it! If you do have something similar, I hope it's treatable!

[@littlebears7515]

I was just thinking the other day that I've missed seeing you around here. Glad to see you back again!

[@MommingwithMigraine]

So sweeeeet! Hello!!! That's an amazing story. I beg you, don't let church trauma keep you from a true relationship with Jesus. It's amazing you can feel Him, He's with you 💜 Jesus didn't do that trauma and He's missing you

[@sar0904]

Praise ✝️! That’s amazing. Similar things have happened to me. Too strange to be a coincidence. That’s how he works in the waiting 😊 I will pray you continue to feel better. Who knows how God will use you

[@lizziemeyer9707]

Jen I literally teared up a bit hearing how God has been working in your life recently. It gave me some renewed hope in the challenges I've been facing. Keep focusing on surrendering all things to Him and exploring wherever He leads you. Your medical journey and your testimony of faith are now intertwined more closely than ever. Don't lose that.

[@MommingwithMigraine]

Aww gosh, thanks so much. In the highlands and the heartache all the same, baby!!!! Amen!

[@lisacook1074]

Be still know I am God. He has you my friend. God is about relationship not demanding compliance. Trials will be used for his glory later.

[@MommingwithMigraine]

Amen and I can already see Him working through my trials

[@weathermage301clapp2]

I understand liking the low pressure over the high (or at least chronic low, acute low pressure pain is really bad). I have IH, a shunt, and possibly a leak as well. So for the last few years I've been in that balance between high and low pressure. Right now I have to actively do things to keep my pressure from going to low. But largely that has been taking a caffeine pill in the morning and having an increased salt intake (keeping the water weight on). Also if it is really bad I go and see if I need a vaccine as our immune response often causes an increase in pressure. (best guess is that it decreases the chance of infection crossing the blood brain barrier). I applaud you for trusting the lord, I know it is not easy and often even harder to talk about or explain to others. I took my own leap of faith quitting a job I had for 9 years without a true destination. It was multiple months of not having a job and just having to trust God. I now have a job I love and have found that my health is a lot better than I thought as the stress of my old job and having to work at 150+% all day was a much larger cause of my health decline than my pressure fluctuations.

[@gennabelle]

I’m in tears watching this! God is so good and I’m so glad you’re following Him and listening to Him even when it goes against everything you believe in. I’ve had a ton of experiences with God intervening in my health journey and opening my eyes to different stuff so i completely understand how you feel. It’s so amazing getting to find that missing puzzle piece and slowly watch everything fall into place and figure out what’s going on and the cause of all the issues. I’ll be praying for you as you grow closer to Him and for your health to be restored and that you continue to make a total SURRENDER and lay everything at His feet. surrender is also my word for this year!

[@virshacarter6751]

Migraine day 6 for me, glad to see a video from you :)

[@reginaromblad4179]

That’s amazing!! God is good ❤😊

[@donnamcdaniel1949]

It made me smile and deeply happy to hear that you are learning to hear, and listening to God's voice. I literally stopped your video about seven minutes in and told my husband "I think she's going to say something about her relationship with God which seems like it's a pretty new thing recently". And then BOOM, there it was! And there''s no conflict with science, He's the one who set it all in place! But he can also intervene. The road isn't always easy, but the journey with Him is well worth the struggle.

Hi Jen 🩷, I am so happy for you! I’m a Christian and I love science. The two DEFINITELY go together. I believe that science just helps us humans to understand what God created. God created everything and science helps us humans to unpack it. I’m glad things are working out for you. God has really helped me with my chronic illnesses and has performed miracles for me. This is coming from a science major and of course science lover! You got this ❤

[@asecretcourtofcrowsandcloc4084]

Great to have another video from you Jen. I was wondering how you were and what happened. I look forward to learning what you have to share in future and I’m glad that it sounds like you’re doing very well. I wish you the best of luck on your journey your family. Also, how is buddy doing?

[@cavlizzy]

I have no answers medically.. but am glad to see you feeling better!❤ I will say I was raised in a religious environment + Episcopal Private school. (Church everyday!) After I finally left for college, I went years not going to church.. I felt like I had just been overloaded with “Church”! (Don’t know how else to explain) But I do believe there is “something”… whether you call that God or not.? *Prayer HAS worked for me. That’s all I know.

[@natalieedelstein]

So happy to see you!

[@MommingwithMigraine]

You too EVERY STINKIN' TIME Natalie!!! We go back yeeeeeaaarrrsssss

[@akschauer]

Thank you for updating!

[@jennymartinez9538]

I was just thinking about you! ❤

[@jennaelizabeth5399]

I love watching your videos they make me feel at least a bit more normal

[@MommingwithMigraine]

Lifelong weirdo at your service 🫡

[@christinabellamoore]

I have missed you! I have only got to 17:15 but I had to stop watching as I'm getting all teared up! I've always trusted and believed in God, and I'm so happy that you are too! I remember I was the one that mentioned EDS, CF Leak, and Tethered Core Syndrome to you years ago! I'm not sure what else is to come in this video, I will come back to it; I've had a horrible year of illness myself, as well as having EDS, Gastropares8s, CCI, POTS, CF Leak and everything that comes along with EDS, I suddenly developed GCA and I'v been horribly ill since last March. I will be back to catch up soon. Love you Xx

[@12345JM]

I am so happy for you! I have EDS and migraines, but have no experience with CSF leaks or tethered cord, but I am a Christian sister and know how God works in our lives and directs our decisions. It’s so encouraging hearing how the Bible is impacting you and your faith is growing as you obey His Word. I loved what you said about taking the Bible at its word. Jesus has proven Himself faithful over and over to me throughout my life, but especially during the really hard times. What a comfort to know our Heavenly Father knows all about us and all the difficulties and never leaves us! Proverbs 3:5-6, James 1:5-6, and Psalm 121 are some of my favorite verses about looking to Him to guide us. Thank you for sharing your story. I pray God will continue to bless you and your family and guide you in all your decisions.

[@sarahlarsen8233]

Hey Jen! I can’t even begin to tell you how much this has blessed me. I’ve been praying for you for years and I am so ecstatic to hear about your growing relationship with God. If someone were to look at things objectively without any preconceived theories it’s atheism and science that doesn’t make sense. There is a book called Scientific Creationism by Henry M Morris that is full of amazing information. It is technically a text book but I have it on audiobook. I know reading a textbook may not be a priority with 2 toddlers and every other obligation you have but I listen while cleaning or during nap time or after bed time. Highly recommend

[@faithcooper8935]

You can pray for me. My migraine symptoms have changed as well but my current neurologist will not listen so I am going to a neurologist tomorrow morning.

[@chrissyweer4441]

Praying for you and your appointment

[@MommingwithMigraine]

We're praying for your appointment, friend. Around here we know appointments aren't easy!

[@PsychoKittee1]

I'm really glad you're feeling better. I'm also very impressed with you advocating for yourself. We, the affected by whatever illness, disorder, disease, etc., need more people to advocate for themselves. We, as a whole, should be ok with questioning the "professionals" who tell us what to do. P.S. your hair looks super cute!!

[@MommingwithMigraine]

Thanks so much!! Haircut was a MUST because I got some silly growth underneath that was curly and I looked like I had 2 different haircuts... so silly. And it's getting so curly. Anywho.... the professionals. Yeah! It is surprising how counter-cultural it has become to question ANYTHING that's recommended if it sounds serious enough. I think there's a balance to strike. (but don't listen to me - I'm not a doctor!)

[@sbruceki88]

I'm not a religious person but I absolutely get that feeling of "enough is enough". I'm just starting my journey finding out if i have IIH or not, but I had been watching you for years because of your migraines. I am spiritual. If that isn't a coincidence I might have the same issues you've been having, or close, then I don't know what is. The universe is trippy! Wishing you all the best.

[@dwlee9138]

You are definitely having Holy Spirit encounters! He is leading! You are doing great! Continue!

[@MommingwithMigraine]

Aww thank you! I want to be the healthiest I can be for my girlies!! He's helped me SO much. Unbelievable ways, which has made me believe!

[@audracollins]

I legit have never left a comment on any channel, but I too had recurring leaks, patches, high pressure that was agony multiple times. I do have eds hyper mobile…but there is one doctor that has found the source of the pressure issue. It’s very rare, less than 100 in the world. He found that my jugular veins had severe stenosis, which was keeping my pressure high until the eds would blow a leak. I am on the road, which is a very methodical approach. Two surgery’s in, things are better but I’m waiting on them to stent the jugular veins on both sides. I don’t have peace yet, and already know all I have to do is say the word and I’m on the schedule. I just feel that waiting is right for the moment. Anyway, I can always tell you more and how there are only 3 doctors in the world that understand what’s happening and I happen to live 10 min away from the hospital he works at. Lots of other issues sprinkled in. Of course, but I wanted to at least let you know there is a line of thinking for some of us! I hope this helps and feel free to reach out if you want to know more

[@MommingwithMigraine]

Thanks so so much for mentioning this and sharing your story! It helps people so much. Comments are how I've pieced together so much of my story. Wishing you alllllll the best with this!!!!!!!!!!

[@audracollins]

@@MommingwithMigraine absolutely:).

[@GingerKiwiDev]

A diagnosis is a journey - especially combined with EDS or any type of hypermobility. It's like figuring out why code isn't working. When software developers are fixing a bug and manage to throw an error that was different to the first one that's celebrated because it's part of the process of finding the root of the bug (there's memes!). Your videos from 2020 were the start of my journey to figure out what was going with me. The current result is that myself, my mom, my aunt and my cousin all have diagnosis of hEDS. As of 27 days ago I have my life back. (covid + hEDS really sucked) My aunt is finally being listened to by doctors. During her surgery to remove part of her colon and create a stoma the correct EDS sutures were used and she's recovered well. My mom has a specialist that travels from another province a couple of times a year so she's finally starting to get care - she's in her 80s. My cousin's husband figured out that soy in chicken feed was triggering my cousin's MCAS when she ate eggs. So for almost 2 years I've only had eggs from pasture raised heritage chickens and I'm having so many less flare ups. I got my wheelchair 27 days ago - TiLite ZRA titanium (her name is Darling). This is the first time since April 2020 that I'm able to be me. I'm going out. I get to be physically active outside, randomly choose to meet friends or go window shopping and not just plan ahead to run only essential errands 1 or 2 days a week. Who knew that blood flow to the brain was so important? */sarcasm* So thank you Jen! Where ever your journey takes you, though whatever twists and turns it's fine. You're just finding new "error codes". The ones before - migraines, leak, ... were totally legitimate parts of the process. Your channel is still the top 10 that I recommend - especially to medical professionals and anyone who's going through the weird and wacky process of figuring out "what the frack is going on with me?". 💖

[@DesMowadeng]

Thethered Cord is commonly associated with my birth defect called Spina Bifida. In that case the spinal cord is severed. As a result, I am paralyzed from the waist down because my spinal cord was outside of my body at birth. There are different types of Spina Bifida that range in how severe they are depending on where they happen along the spine. Because the spine is outside of the body the vertebrae are deformed where the defect is so what typically happens is after closer when the cord is laid back in the column, as it is severed and looks like strands of spaghetti, the cord attaches to the scar tissue from the surgery/surgeries and needs to be released. So it's not like the elastic idea you suggest here but that may be the other thing similar to thethered cord that you mentioned. Either way your best option may be to seek out an orthopedic doctor/surgeon because it is possible that your vertebrae are damaged and maybe the patches caused your cord to do the noodle thing that then attached to any scar tissue.

[@MaddieBullock]

Jesus loves you so much!! I know it’s hard to trust him sometimes, but man is it worth it. I’ve been a believer for a long time and sometimes I do wonder “Am I doing what he wants me to do?” “is this part of his plan for me?” But regardless of some of the doubts, I may have in hard moments. I’ve always known that he will use my story (especially the trials) for my good and his glory. I’m so happy that things got a little more clear to you, I’m going to continue to pray for your complete healing. Getting to know the Lord is the best thing you could ever decide to do.

[@pennyheisler7500]

Absolutely God and science get along! He created this world, everything in it and we have freedom to learn how it works and marvel!

[@cindyallison6680]

You are doing great. You look amazing I love the hair. God and science absolutely go hand in hand.

[@erinanderson8147]

So glad you listened to God. Keep digging into the Word! He’ll guide you in what to do next. Praying for you!

[@LaCafedora]

I'm an atheist, and I am frequently dismayed at the way that people will set science and religion against one another as adversaries. I think that is a false dichotomy and only serves to create conflict and bitterness. I'm not interested in your spiritual beliefs because they are not relevant to my life, but also you have never prosthelytized to me privately or publicly, and stating your opinion and personal experience is just that -- personal. Listening to your instincts is a good skill to cultivate, and whether you want to call that god is your own business. Generally speaking, internet is something of a cesspool when it comes to the respectful discussion of philosophy and religion. I just steer clear. And if people post unkind or inflammatory comments, I am a strong supporter of the unfliching use of the Block feature in whatever form it takes on various platforms. (Notably, Elon Musk has removed the Block feature from Twitter, making it a platform to be avoided forever, at least until he is no longer remotely involved in its operation -- if that ever happens. Sigh.) Anyway, I see no issue whatsoever with you expressing your beliefs when you feel compelled to do so, as long as they don't lead you astray from the path of science. In this case, you were explaining your absence from KZbin, and you wanted to tell the full story, and I accept that under the heading of Transparency and Full Disclosure. I value vulnerability and transparency, and I truly appreciate you sharing this, especially because you were afraid to expose yourself to the very real dangers of internet trolls. Honestly, it's a brave thing to just post something so personal for everyone to see when there is the distinct possibility that shitty people are going to throw stones at you. I think your followers are good, supportive people, and you won't see that here, at least not from your standard audience. As for your mention of Hypermobility, I know of a specific comorbidity that may hint at the subject of your next video, but I won't spoil it for anyone.

[@ChristopherPasillas]

I am not religious and I am glad you listened to what you knew was right. Whatever the source, powerful messages you're receiving in your life have to carry significant weight and only you can know what is right for you to do.

[@meghanlaird6333]

I think if you are concerned about a potential Tethered Cord diagnosis then definitely bring it up. I highly suggest going to a neurologist who has experience in Tethered Cord research, it makes a huge difference in how they treat your concerns. As mentioned in another comment, it is related to Spina Bifida but you don't have to have that to have Tethered Cord. There are also many different sub-categories of Tethered Cord now with a variety of leading causes. I had Tethered Cord and the only way we found out about it was my brother got a confirmed diagnosis and since I had similar symptoms that were more severe than his, but not fully conclusive MRI's, they decided to go ahead with the release surgery. I was 16 and the cord was so tight that they really struggled to get hold of the cord in order to cut it. I will say that if your doctors decide you do have this and they want to do the surgery, the release surgery has varying results depending on how it became tethered. For my brother, it took care of all of his back issues and he appeared to grow about 4 inches in 2 weeks because he was able to stand straighter from the release of pressure. For me, I am part of the 25% that had no verifiable relief from the surgery. I had a decrease in the severity of my symptoms but they did not go away and it caused increased hyper-sensitivity and pain issues across my whole back. There is also the chance of the cord re-tethering, but that really depends on how it became tethered in the first place. I currently am fighting that potential issue and the Neurologist that I saw completely brushed off my concerns because he said it was extremely unlikely to re-tether while all of the literature says there's a decent risk of it happening. I think it's also important to note that you are not just hopping from one diagnosis to the next. You are gathering data and treating it as symptoms appear. Once one thing is managed it can uncover a hidden symptom that completely changes the plan. If you think something else is going on don't stop looking. I have a friend who it has taken more than 15 years for them to get a diagnosis for their issues because they are one of the few who have the condition but are antibody-negative so the blood tests were never able to confirm the condition. They still do not have a fully positive diagnosis since doctors refuse to believe antibody-negative patients exist for this condition, but this is the diagnosis that fits everything they are experiencing.

[@meghanlaird6333]

I forgot to put it in my first comment, but once you said someone had reached out to you about Tethered Cord I instantly agreed with that thought. A lot of the symptoms that you then went on to describe are similar to the ones that I still deal with on a daily basis. I am glad however that the CSF leak patches have helped you so much. That right there is another reason that I don't consider what you are experiencing as hopping from one diagnosis to the next, I think you genuinely have multiple diagnoses that you are struggling to treat. There are so many intricate comorbidities that sometimes it's only once you get one issue dealt with that the other becomes apparent.

[@Kijahlovex]

I messaged you on instagram, but publicly I want to say I am overjoyed for you!

[@ServiceDogAcademy]

It’s Mary, the dog trainer who inspired you to train Buddy. Do not discount the power of words of knowledge or those internal feelings or guidance, they are life changing. I have taken The Art of Hearing God class by John Paul Jackson and totally believe in the supernatural aspects of God. It saved me from a shooting during a festival while I was out socializing the puppies for service work last year. I kept hearing “if there is a shooting, you will not survive” and “the puppies will be trampled”. I’ve help train over 300 service dogs and I’ve never heard anything like that in my entire life when out in public. These words kept repeating over and over again and it got so insistent that I started to look for an exit at the festival I was walking through. Less than five minutes later hundreds of people started running and screaming towards my direction from the shooting that had just started. As I turned around and started running something lightly touched my back near my right shoulder. Because of that word of knowledge we had a head start on everyone else, were not trampled and were protected by an angel behind us. God is good. He talks to us all the time. Knowing Gods voice is not “weird”, it’s how we’re wired. We just have to learn to discern our desires from his promptings. The John Paul Jackson class changed my life and saved me and my candidate dogs from a shooting I was literally walking right towards. If you wanna hear about more of my supernatural experiences, you can watch my video titled “Will my service dog go to heaven”. And if you want to pursue more of the supernatural aspects of God, I’m just a text away.

[@MommingwithMigraine]

MAAARRRYYYYY OH GOSH HELLO 💜💜💜💜💜💜💜💜💜💜 what a story! That was God no doubt in my mind.

[@NickUncommon]

That is creepy to me:at the beginning of the video, I thought tethered cord syndrome, when you mentioned, that there was a new diagnosis. And not 17 minutes few seconds into the video, you mention it. I suspect something similar for myself and my symptom development, especially since I had one of the worst headaches two weeks ago, and they reminded me of how it felt with the hemmorrhage getting worse. This slow leaking that can come from weak connective tissues giving in when there is blood pressure peaks and there definitely was one during the headache periods. I will follow your journey even closer now, maybe there are not only superficial parrallels.

[@tracyanderson8663]

Things happen for a reason and the answer comes when you least expect it. So keep following the path laid out for you. Also I really love your new hair cut.

[@jennettekilgrow4825]

I pretty much never comment, so this is a special day!! I just want to add my voice to those of ‘believers’. Strong belief is science as the high quality study of all things in our universe and God as the organizer of it all. What a brave video!! Your vulnerability has and will attract the people to you that are praying for their own answers. ❤️

[@kathryn-anon]

One of my favourite things I learned about in a Victorian lit class was the discovery of the rainbow hidden in light. This was discovered in an era of strong anti-science. People believed that the pursuit of science was the pursuit of Satan, a re-enactment of the forbidden fruit, an insult in the face of God. And then they discovered that a prism could separate white light into a rainbow. The rainbow was the sign of the first covenant, and it became widely accepted as a sign of God's acceptance/permission to pursue science and research. I'm not personally religious, if anything I'm mildly agnostic, but I don't think having faith in a god/pantheon is incompatible with having faith in science/measurable fact. Faith, like other lifestyle choices (from veganism to crossfit to bdsm to whatever), is a beautiful thing so long as you're not trying to force it on to other people ♡

[@crazycoloradochick6059]

Thank you for sharing. I recently found your page about a month ago when I was diagnosed with POTS. I was already diagnosed with arachnoiditis, but had migraines and “CSF issues” that we didn’t realize were related to the arachnoiditis. I have flares that can last a few days to a few months which can affect my mobility and bladder/bowels as my spinal cord continues to grow together after complication of a spine surgery in 2014. I am unaware of tethered cord syndrome, but it sounds more like you have that as even the tiny flares I get, are gut wrenching pain I would never wish on my worse enemy. My understanding is arachnoiditis is an also an auto immune disease, and POTS has become more prevalent with Covid. I’ve had Covid 10 times and started fainting after my last bout Covid. Neither has cures, arachnoiditis has no treatment and no drs. Exercise was my main was to keeping it at bay, so with the POTS, I am struggling, as the first 2 meds haven’t helped. I know what a relief it is though to get a new direction and not feel like you’re going in circles. I’m glad you are back to share your journey. We are always on the right path when we surrender and trust. ❤

[@courtneyhimes2063]

As soon as you appeared on the screen I noticed a real difference in your face. I couldn’t put my finger on it but after watching the video, it is totally a lack of tension. You look less tense. I’m glad you’re figuring things out and are at peace with your journey to getting there.

[@daniellebitzer304]

Me too!

[@alisaburgess2890]

🙏🙏🙏🙌🙌🙌 I have no words to express!

[@RestingBeachFace]

I loved hearing your story! I’ve followed you for a few years, and hearing you discuss your relationship with God in this video is so refreshing! I also have a hard time discussing my relationship with God with others because I have a debilitating fear of criticism. I applaud you! 🤗🤗

[@mce6328]

i just stumbled on to ur channel the migraine is y i clicked i’m in the middle of a migraine n have questioned if its a leak since i can l lay on my back for couple hours n it will ease up some but when i stand that’s all she wrote pain pain n nausea nausea n at its worst jello legs can’t stand walk etc. i do have issues with my entire back n have never heard of tethered cord i’ll have to pay attention thank u for sharing!!! may God Bless You!!!❤❤❤

[@anasgarden6483]

I don’t have any advice, but I so enjoyed the video they are always to interesting. The other thing I wanted to say while I don’t have any experience with your particular issues as far as I’m aware. I feel like there is a common theme in chronic illnesses, which I have experience. I feel like we through a long journey to find the root cause of our illness, and often receive many diagnosis on the way, which are correct diagnosis, but are still not the root cause. Eg I have been diagnosed with anxiety, Lyme disease and chronic migraines I’m sure I could have got many more diagnosis, but I don’t have enough money ore time, and while these diagnosis are correct I am now thinking I might have more diagnosis underlying my issues eg celiac.

[@serenitygoodwyn]

I'm so glad to hear you are doing well. Who said God and Science don't mix. I studied Astrophysics at university and of the 12 people I hung around with often, 6 were Christian and 1 was Muslim. The Catholic Church has it's own Astronomers and they do genuine good quality science , they are not under orders to comply with some dogma, they are actually allowed to do science. Science and Religion don't answer the same question. Science can tell us how, Religion tells us why. For example, Science allowed us to develop nuclear physics, religion (and/or philosophy) are needed to tell us how we should use it and in what circumstances. Science can tell us how the universe started, but not why.

[@caroleolsen2883]

I'm so happy you posted this, for a lot of reasons but especially to tell us you found God. I'm so happy for you and your children, who will now have the opportunity to make their own informed decision to have a relationship with God or not. As far as your symptoms go, I'm happy also to hear you're doing better. Keep going with your gut, keep going with God, and make your own scientific decisions. Science and God can go hand in hand. Go with God and his teachings. Be careful what man has added to religion. Take care

[@MommingwithMigraine]

Be careful with man - very wise. So many people leave God because of what MAN does. Awful! Thank you for this sweet comment. My girls are why I started digging so deeply into the scientific proof of the resurrection. I had to know where to lead them. Prove the resurrection with sources outside of the Bible.... that changes EVERYTHING

[@reading.with.rachel]

It's so wonderful to hear from another Christian with chronic illness. Thank you for being so open

[@ChimeraTruely]

It doesn't matter what it's called; it just matters that you listen to your body and that random noise that keeps grabbing your attention. Also, you can have "coincidences" that you shouldn't ignore. My day started with a quote for medical equipment I needed. I wasn't feeling well, so my parents were handling it. I had a gut feeling that I needed to say hello and had a new question to ask. Somehow, she started talking about her menopause journey, but I don't even know how it happened because it wasn't something we were dealing with. After she left, I went to bed. A few hours later, I was woken up by a phone call from a friend who had just had a horrible appointment with her OB/GYN. The things this random stranger brought into the conversation were not for me; they were for my friend. She needed that information, and something created the situation that allowed me to come into possession of it. I don't care what you call it, but listen when your gut is screaming or someone talks to you about something important to them. ❤❤ Good luck on both your health and spiritual journey. 🥰

[@aaron-jasonenous7270]

I feel very honored that you shared your faith journey with us.

[@bilibili68]

you have to realize that our conscious brain is a tiny, tiny part of our "self". Most of what happens to us happens at the subconscious level. I am saying this because it could be that subconsciously you felt that something was different in your body, your patch, your disease and that you should wait. But this awareness could not reach your consciousness, which happens very often. In these cases our brain finds ways, stories, logical or semi-logical explanations as to why we should behave a certain way. "Divine intervention" is one of these stories our brain can latch on to. So if you feel this is strongly coming from your gut, it might not be such bad medical advice to listen to the way your conscious brain decided to explain these gut feelings.

[@hannahemcnabb2024]

I am an atheist but I’ve been trying to put in more effort to see things from different perspectives or at least, accept and not be judgmental of the people who have opinions that differ from mine, whether it’s related to being religious or anything else. Truth be told, I don’t know if this comment will come across the way I mean for it to, I have Intracranial Hypertension, a potential CSF leak, EDS, maybe even a Chiari Malformation, I also have epilepsy, so my brain is essentially frying 24/7 so please cut me some slack if this comment is confusing, lol. It might just be confusing for me but other people can comprehend it just fine, but I just wanted to include this part because I’m self-conscious. I saw some other comments saying what I’m about to say, but whether or not you believe that God exists or whether or not you’re religious, you have an instinct, a gut feeling of how an appointment will go, or how a procedure will go, so even if you aren’t religious and don’t find the extra meaning a religious person would in the instinctual feelings that you may get, you still get those instinctual feelings, and 99.99% of the time, those feelings correctly indicate what is going to happen with whatever it is. Dang, I’m just rambling now, sorry guys, brain is fried, been frying since I was 5. (They found my brain lesion at 5 years old and just let it progress, so that’s FUN. I’m 23 years old now, almost 24.)

[@Leeni7]

I’ve been dealing with CSF leaks for a few years and have followed your story. I. Have EDS and had surgery for tethered cord and mine have continued post surgery but it was causing so many postural issues for me!!! I also felt such horrible dural tightness that I could hardly touch my toes and bend over whatsoever. Did your pregancy(s) worsen your symptoms? I have had one pregnancy and some worsening after. Dr. Fraser Henderson did my tethered cord surgery and he specializes in Ehlers Danlos neurosurgery ❤️I’ve had other procedures since then that could have worsened by leaks. They have yet to locate my leak. Seeing new specialist.

[@Leeni7]

Oh and my relationship with god has gotten so much stronger through my illness the past 8 years! Lean into god, medicine and god aren’t these separate entities!

[@bertiesark]

please what is the name of the condition again? I have had a bad injury as a young child and have had bad migraines for a long time now and drs do not know why

[@deniseellenburg649]

Welcome to the fold!! A personal relationship with Jesus Christ through surrendering your life to him, produces the only real peace you'll ever know in this life. ❤❤

[@jackielamar7260]

I've seen the ads & such for Cefely .. something that I can't afford

[@lisha1006]

I'm just curious if you've looked into ehlers danlos syndrome because you mentioned being hypermobile and a lot of the issues it sounds like you're having a lot of issues that people with EDS have so that might be worth looking into

[@vampirebottom]

In Judaism (my stomping grounds), G-d is absolutely plum-tickled whenever humans question every little thing and don't take what's presented to them at face value without applying reason and introspection--the most essential tools and components of validating faith (imo). I'm glad that you're learning to wield them in a way that's serving you (individually, and collectively in your relationship with G-d) best. Okay, solicited general medical advice time: you mentioned thyroid dysfunction, and in another comment thread you mentioned that you also have GI malabsorption. I know you also mentioned being medication-free, but if you do choose to go pharma for thyroid management, consider trialing a liquid suspension of levothyroxine (like Tirosint); liquid suspensions don't have the same contraindications as the solid tablets. I have other, more specific comments I feel compelled to share, but they come with being vulnerable about my own medical background/experience. Is your email on your about section strictly for business and sponsorship correspondences, or may I reach out? (:

[@chronically.advocating]

I've always believed in something. Not necessarily always God (that's much more recent, but always that there was something bigger than us out there helping in the background. This is why I've learned gut instinct, and to listen to it. Up to 3 times an incident can be coincidence, but more than that and now you're looking at a sign of some sort telling you to slow down and look at things again. I really think you may be on to something here. I know that anyone with hEDS or HSD is as at a much greater risk of developing tethered cord, because the spine and neck have excess laxity to them allowing for greater likelihood of damage to the cord and discs. I've just started looking in that direction as well. The symptoms of high pressure are definitely worse as it takes away that laying down to get rid of the pain and symptoms. I prefer low as well due to being able to lay down and get relief, but with high pressure there is no true relief. I wonder do you also get headaches and migraines from bending over or squatting? That right there is my biggest problem (and has been ever since I broke my back in April). Bending and squatting never used to give me problems, but since that broken back I get constant severe mini headaches (about 30 seconds long) every time I bend over or squat as well as the regular near daily hemiplegic migraines. I think you may be looking the right direction. Honestly two other things to look into would be CCI (Cranio Cervical Instability), and AAI (Atlanto Axial Instability) as those can cause very similar symptoms to tethered cord, and can even be a cause of tethered cord itself. Either way I'm curious to see what you find out. One last thing. As far as being vulnerable and anxious about it that's okay. The anxious is a very normal thing to feel because no one likes to get super personal with thousands of people on a semi anonymous platform. That being said being vulnerable is a good thing. It makes you even more real and personable than you already are, and it helps bring in even more advice and understanding by showing you're open to receiving help that we may have to give.

[@Curious_Not_Judgemental]

One time I had a patch and felt pretty bad for several weeks. I was for sure my patch didn’t work. Then, I started to feel better. That could have been you too. You’re CSF leak issue could for sure be improved, etc. Especially, since you can stand. I’m not able to be up much at all right now. Seems like you have always had different issues and a lot of them overlap. Did your leg hurt prior to your patches? If not, it could have been the needles that did it. I have had a lot of needles too. At one point, I wish I had stooped my leak treatment cause I had gotten to a functional level. I’ve been set back. I’m still hoping it’s a temporary set back. I say that to say that if your pressure situation is in a good place then stopping that course of treatment could easily be a good thing.

[@lorapridham3310]

I'm an atheist, but I respect the importance of faith for those who have it. I think it's probably difficult to come out as a new Christian, considering the Christofacist movement in the States now. Just another example of your bravery.

[@titanbuck7]

Taking tumeric pills also helps relieve inflammation. I like it for what ot does to help my body not hurt as much, andi dont mind the way it makes me feel after i take it. Seems like my body relaxes some.

[@MommingwithMigraine]

Most days of the week 😉

[@Curious_Not_Judgemental]

Kind of piling on my other comment. If you’re in a good or maybe marginal place, maybe no treatment for anything is best and just live to your current fullest. Don’t let the adversary steal your joy. Embracing the peace and joy that only Jesus can provide is the best way to live. Whether sick, healthy, rich or poor.

[@MommingwithMigraine]

Love that outlook. Coasting for a little bit feels wise!! Thank you!