VLOG + TIPS: The 48-hour FLAT TEST // The Next Step in my CSF Leak Story!

An at-home test for a CSF leak! I'm suspected to have a spinal CSF leak, but CSF leak diagnosis is tricky. In order to test how postural my chronic illness symptoms are, I did the at-home 48-hour flat test. It was originally developed by Dr. Ian Carroll at Stanford, and it's just as it sounds: you lie down for 48 hours, and answer questions about your symptoms.
Did I have a postural component to my headaches and other symptoms?
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[@MommingwithMigraine]

I didn't notice it before, but I can't believe how much trouble the stabilizer was having at 28:40ish and beyond!! I think my odd balance was throwing off the camera 😳

[@johankacook]

Woah

[@analivinha100]

Shout out from Brazil ♡ love your videos and don't even have a reason for it, I just feel like your friend when I'm watching

[@whatchyagonnado]

It was really neat to see the differences from the beginning to the end. It's one thing to hear about how chronic conditions affect someone's life in so many seemingly insignificant ways, it's another thing to see the substantial changes within a 30 minute timeframe. Thank you for your videos. They are interesting and enlightening. :D

[@susanmargaretwills6432]

Hi it must be hard talking to urself right? But we're all out here latching on to ur every English slip-up!🤣C U next Vlog sweetheart

[@Urgelt]

I think you hit that ball out of the park and sailed it to the next county. Positional impact nailed down tight. The video you produced will be a better diagnostic tool than the questionnaires you filled out, too, if you can convince a neurologist to watch it. Props to your husband for his great support. Props to your daughter, too. She has a great smile. And props to you, Jen, on many levels - for videography and editing, for interesting extemporaneous dialogue, for relentless truth-seeking, for your quirky, self-deprecating humor. I think neurologists should pay *you.* You present to them an interesting challenge, with tons of useful information to digest. Any neurologist emerging from your case with success will be the better doctor for it. You're better than an extra year of interning.

[@MommingwithMigraine]

What did I do to deserve you Urgelt 😭

[@Urgelt]

@@MommingwithMigraine What did you do? You submitted valuable educational content to KZbin, sprinkled with erudition, warmth, wit and humor. In the early days of KZbin, this, not TV network paywalled content, twerking and Mentos rockets, or endless commercials, was what I hoped KZbin would bring us. Along with the chance for interesting conversations! You checked a lot of my boxes. Disabled people may learn coping strategies - and logic - from you. Non-disabled people may gain a more nuanced understanding of disabilities - and logic - from you. Dog lovers may gain a fresh appreciation for their pets' minds, personalities and capabilities. Hell, husbands may get a clue as to what makes a good one. Speaking of whom, when will we see more of yours? He surely has interesting observations to contribute about all of these subjects.

[@JenS-ws7ct]

@@Urgelt Beautifully said, the very essence of this channel and why I love it so much. Sometimes a thumbs up is just not enough to show the appreciation, so thank you for the words I could not begin to find. X

[@rebeccahwark8838]

My neurologist barely shows up for my appointments...lol

[@therealxunil2]

Caring for your spouse is part of the deal, Jen. Just keep loving each other and don't feel guilty that he's caring for you! I've done things for my wife that I'm not even allowed to talk about lol

[@MommingwithMigraine]

Husband says this too... I've just gotta work through it in my own head. Ugh. Thank you so so much for the nudge.

[@meganvalek2690]

I'm not even cautiously optimistic anymore. I think you found your thing! Also, when you get healthy, if you end up changing the format of your channel to perhaps sciency stuff, I will absolutely still be here for that. I'm not a scientist, but I really enjoy your channel and I can see how happy that makes you.

[@Em920]

I agree! I would love to see more of what you're passionate about Jen ❤

[@marry632]

Agree!

[@nunulea1]

Yes please!

[@starry_eyed_girl]

Agree! Jen has a great personality and is so interesting 😊

[@Lucyloo1891]

Me too! I could watch her all day and probably have a time or two

[@marry632]

Whoa when flat you're not "not migraine Jen", you're "I'm alert and life ist kicking Jen"! That's amazing! It's so great to see you this way and get an idea of what scientist Jen is like! (Just because you mentioned it in the video: english is my fourth language!)

[@erictaylor5462]

Your husband is great. You should keep him.

[@MommingwithMigraine]

It's in the contract

[@SaraNCurtis]

Me during the entire intro: "OMG JEN GO LAY DOWN BEFORE YOU PASS OUT 😳" So glad this test brought results and some personal clarity!

[@cadeheinberg3047]

I watched this for the first time 11 months ago, and here I am at 26 hours of my owm flat test. Its harder than it seems!

[@rikkihurt]

From experience.... 9 times outta 10 the tests, the order of tests and the reason for the tests is insurance. After years in an abusive marriage where I was made to feel guilty for everything including the death of our preterm baby with cystic hygroma.... I refuse to feel guilty for anything that is out of my control. I appreciate and am amazed that I found such an amazing man that takes such good care of me. I am grateful, thankful and so blessed... I do not feel guilt. It's bad enough feeling all the symptoms... And living life in my failure of a body... I know I would change it given the chance which is why I'm having my 3rd major surgery. It's just not my fault... So no guilt. I didn't come to that philosophy on my own. My husband helped me. Xo

[@nathaniel3102]

To your husband: My wife also deals with a list of illness's (including undiagnosed and random mystery symptoms), has a service dog, and her mother recently diagnosed with Alzheimer's (whom I am also taking care of), kudos to you, bro 🤜🤛 Getting to see them happy, and knowing that you helped make them happy is its own reward. Everytime there's a holiday or my birthday, she asks me what I want. My response is always the same: to see her happy and smiling. (She still gets me stuff)

[@theehelpinghoundscout5323]

I love this comment so much, my mom and I both suffer with our illnesses and her husband (my stepdad, for me he's my true father) takes care of her like she deserves (and me of course haha, but with my service dog Im way more independent now so he helps her more) It's good to know that it makes some people happy when caring for their own ❤

[@c.m.303]

I sure hope you got some help coming in. Alzheimer's will only get worse...it's just a matter of how fast and in the mean time some crazy behavior. And God Bless you for being there for all of them...but sometimes that means organizing the help they need...not just being the one who gives all the care or you could burn out.

[@rml022497]

When I had my epidural he went in a little too far and I had a CSF leak. The migraines were intolerable and the only thing that made them stop was laying flat on my back (really hard with a newborn as you know) I had 2 blood patches done but they didn't stick. Thankfully after about a month it healed itself and they went away. I can't imagine dealing with it for as long as you have. I'm so glad they're finally going to test you!

[@LittleDergon]

It's so interesting watching how drastically your brain function changes during this, improving during the 48 hours and then deteriorating so rapidly once you stood up again

[@seancushman]

I am so glad to see that because I have the same thing happening to me and I'm not sure if it is the POTS or a csf leak as my symptoms resolved while flat for three days and return when upright. It's so frustrating that doctors will just blow you off. Mine spent half our visit telling me why I couldn't be but we know differently now. I kept trying to move on to the next issue as I am not going to argue about it I will either come in next time with current information off Pubmed or wait till I get into the Neuromuscular Clinic at SUNY Upstate which my doctor is having a hard time getting my referral to 😢. I even gave them the fax number to the clinic that they gave me to have him fax it over... Frustrating Doctors done know but what they have learned and I don't fault them for that but our healthcare system sucks!

[@Maddym365]

20:46 “you really are a mini me aren’t you.” That was stinking ADORABLE

[@MommingwithMigraine]

HER FACE 😍🥰😩 I'm melted

[@dekjules32]

I love the part where you get emotional about having your curiosity back. I do understand that. I was finishing my last semester of course work toward my PhD and I got a wicked concussion from a fall. It took six weeks for me to be able to think at that higher level. It's that higher level of curiosity where you can actually contribute something meaningful. I was so fearful of never getting it back. So great to know scientist Jen a still in there. And yes - sending big love to your hubby for being amazing.

[@MommingwithMigraine]

Relieving beyond belief that I'm still somewhere inside this shell of myself 💜🙌 Thank you so so much. I'm sorry you went through similar 😕

[@ViveMeorLeti]

Hi! As a linguist, I just wanted to help clarify that "invaluable" works the way it does because it means something is so valuable that you can't assign a value to it. It's the same as how "priceless" doesn't mean the thing doesn't have a value or price, but that it's so precious you can't put a price on it. Best of luck on your path toward a diagnosis, it really looks like you're on the right track and we're all rooting for you!

[@MommingwithMigraine]

Thank you and thank you. That makes PERFECT sense and I appreciate the well wishes!!

[@seancushman]

I had what i believe to be a CSF leak a little over a month ago. I was unable to be upright for 3 days from being dehydrated and symptoms I've had for over a year went away and my brain started working so much better almost like it used to. I've found that if I let my heart race while standing that I get short of breath, cognitive issues, have to yse the bathroom even if I did 10 minutes ago and several other things. I can't say for sure I have a csf leak but I was so happy as you were when you realized your brain was still in your head. It's a horrible feeling to wonder if you're going to ever be able to think properly again. I can't wait to see how you fair at the doctors. Speaking of doctors, when I was telling him how my nose was pouring clear watery fluid out my nose and he said it absolutely couldn't be a csf leak as you would need a very hard impact to the nose or someone knowing how to hit you😢. Luckily I have already done my research and watched all the top universities doctors give Continuing Medical Education synopsis and know that is not the current medical understanding is. I didn't argue with him, I like him and he I believe is just dated in his understanding and that csf leaks can be spontaneous. Jen did you know coffee stimulates CSF production. I wonder now if that is why i love coffee so much. I drink it around the clock. I also for some reasons at times can not get enough and other times I can't drink more that 3 or 4 liters from the French press and other days I may drink 10 liters of coffee a day. Well, im going to get back to see how you made out at the neurologist. Love the videos

[@MoreCoffeePlease.]

29:00 and on: Nystagmus. I have so much to say but have to come back to do it. If you show your neurologist this footage, though, please make sure you have them note the nystagmus. I’m also interested in the frequency of nasal leaks while prone vs once you stood and, if a difference was noted, how quickly the (CSF) drip reestablished itself. Mad love to you. You’ll be in the lab again scientist Jen, this doctor and fellow complex migraineur just knows it. 💛

[@crystald3655]

The Nystagmus is a migraine symptom for her, so her neurologist already knows about it.

[@Crowcifixx]

Interesting... nystagmus is a Chiari Malformation symptom and woud be in keeping with worsening positionally too

[@thisisctown]

You seemed to light up towards the end and that was very cool to see. I hope they are able to give you more answers from this!!

[@CloverRose]

When I was 17 I suffered a brain injury and spinal cord injury and had to relearn how to communicate. When you are trying to say something and you think it's not making sense, it's loud and clear to me. You're doing great job

[@bellab8792]

Did you notice the rapid eye movement in the end of the video, that was super interesting

[@cadeheinberg3047]

Ive watched so many people with chronic illness talk about symptoms in videos, but they tend to cut out parts of them having in the moment fog or dizziness and I really appreciate you leaving that stuff in

[@tinymossdragon1508]

Yeah this test really seemed to do a lot for you. Laying flat really helped you. I hope this helps you find the right diagnosis and treatment. Hell I hope everyone gets the right diagnosis and treatment. Good luck to anybody in comments whose looking!! I wish you painless tests, great doctors, and real answers.

[@catherinehorne9017]

I'm really glad that this wasn't a waste of time and you've managed to get a lot of data from the test. Hoping this is the start of finding real answers and correcting the issues that are so debilitating for you. It's exciting!! Progress 😀 I'm an engineer and I know that if I'd lost that technical cognitive ability I would be just as frustrated as you. So awesome that you regained some of that within the test!! Such a positive sign that you are on to something here

[@MommingwithMigraine]

Thank you, likewise - I was thrilled!

[@mandydini]

I’m an engineer too - with POTS and ME/CFS. And let me tell you it is SO FRUSTRATING when brain fog tries to undermine me by keeping me from saying what I want to say how I want to say it. I am still able to work part time but it takes a lot out of me.

[@chronically.advocating]

OMG your hubby is defo a keeper. Idk which was more emotional you realising you're emotional, the baby and all the cuddles, or Bubs snuggling up next to baby. You guys have an awesome family. I'm so very shocked to see how quickly the cognition declined, and the nystagmus (reading eyes) came back. We watch you every week so we see so much of the symptomatic Jen that watching the full transition from non-symptomatic to symptomatic is stark and shocking. There's defo a huge postural component to all of this.

[@Josh_D78]

It seems that the 48 hour flat test was a success for you :-) and hopefully this will give your doctors the data they need to move forward with the next step in treating your condition

[@melissajohnson6501]

Your videos have been very helpful and inspiring to me in my journey with doctors ans diagnosis. I have been diagnosed with PTC (Pseudo Tumor Cerebri) now also know as IIH (Idiopathic Intracranial Hypertension) and chronic migraine since 2009. After my youngest was born it all started getting worse, and recently (Nov) I have not been able to work, and am now on medical leave. I watch your videos with my husband, and upon seeing migraine Jen, my husband said "she "acts" like you during an attack. Im thinking the neurologist is missing something. We need to get another opinion." I have 2 kids and am basically bed ridden. I am now on my 4th neurologist, that thankfully has been reputation for digging until he can find something to at least get his patient relief. Thank you for putting this all out there. While I hope you are able to get a true diagnosis and proper treatment, I'm glad to know I am not alone in a world that feels so isolating.

[@MommingwithMigraine]

The biggest hugs Melissa. I'm so glad that seeing my episodes turned on a light bulb for you so you can hopefully get some relief with this new doctor! I'm also selfishly glad because it lets me know that posting the more difficult vulnerable content is helpful.

[@maryclark8661]

Your daughter is adorable! She is wanting to talk so badly. Mamma, you look so vibrant and alert. It is awesome to see your eyes shining and voice so alive . Praying the doctor sees the value of this test and knows where to go with the results. Good luck. Take it easy. Your body has a huge adjustment to make. 🎀

[@BlackCrystallDraygon]

It feels weird to say I'm happy for you when it's clear that symptoms were coming back incredibly quickly when you were upright again ... but I am. I'm so so glad that you can take the results of this test to your doctors and give them some "proof" that there is a postural element - that feels like a breakthrough and I really hope that's what it turns out to be! I'll keep my fingers crossed for you. Also, those Viking birthday presents are epic! Great idea from your husband to surprise you with those mid-way through the test. :) Love the drinking horn especially, I bet it was really cool to have a birthday drink from it!

[@DMHCre8]

I'm so happy for you, Jen! The longer you were flat, the more focused, alert, and bright-eyed you seemed. I hope this leads to an answer for you and treatment that will help you. I think it's also really great that you have this video as a real-time record that you can refer to. Sending you prayers, hugs, and all the positive vibes. :)

[@MommingwithMigraine]

Thank you!!! I agree, I was so glad I filmed. They should recommend it. 👌

[@amneris9433]

Just cant imagine what a relief it must have been to feel again like your former self! And hmm.. how you deserve all this (husband, buddy, cutest baby...)? I think by being such an aweesome person

[@MommingwithMigraine]

🥺💜💜💜💜

[@siridanicak3997]

I completely understand your excitement and wonder over the little things like curiosity and chattiness and analysing chemical equations! All those things you take for granted...until they disappear and you start feeling dull and crappy all the time. Do not berate yourself over preparation or things you could do better. You do a lot. And of course your husband is going to help you with this thing you need to do. The right support network is half the battle. He is wonderful for taking care of you so well. Do not berate yourself either for not doing this sooner or for not making the connection. Five yrs is not so long, you'll see. Really enjoyed this video, thank you for sharing your journey. I'm so excited about this. I think 30 is going to be really amazing for you. 💕

[@sarahwithstars]

As someone who regularly loses entire days and only gets up for 6hrs during migraines, I admire you so much. I cried through your latest video and hope you get answers and maybe the shunt or plug you need. You are one of the strongest people I 'know' and I'm so proud of you and your amazing husband. Xxxxx

[@coal.sparks]

I'm so pleased that you have this incredible data point to provide the doctors, and I can't wait to hear what they say! Also, did I miss that you'd found a doctor who was interested in helping you? Because last I remember watching, you were struggling to find anyone to take the CSF leak thing seriously. :(

[@cavlizzy]

Yes, she has had some of the most current updates in her IG stories. But they only stay up 24 hours, so you have to check her IG daily for stuff like that. Just fyi. :)

[@erictaylor5462]

4:45 I'm glad you made that clear, because a mist diagnosis is really annoying.

[@luvfunstuff2]

LOL!

[@BellezaOscura]

I can not think of a family who deserves it more, to have Buddy on their side! 💞 Many greetings from Germany by the way 🤗

[@franny5156]

Hey, my name is also Franziska and I'm also from Germany

[@BellezaOscura]

@@franny5156 cool ^^

[@denisesynder2799]

I am thankful I found you, I have suffered for 8 yrs. so many doctors. So many “it’s in your head, this as good as it gets” I went to the Cleveland clinic 5-10-21 for a blood patch. They gave nothing before, during or after the patch. I was only flat for 15min. Then I was sat up, went to the toilet. And asked if I wanted to walk to the car!!!! I was refused a nausea patch because I’m a daily puked/dry heaves. I cried on the way home thinking it worked. My horrible neck pain, the headache I head was more pressure than pain, my nausea was faint. I ate that day and enjoyed it. I was afraid to be excited. I was flat except when I had to go. Day 2 afternoon I puked a lot. I think it blew my patch. I’m so upset at the lack of knowledge from the Cleveland clinic. I’m not sure what to do now. My heart breaks for you. This has truly changed me , I no longer drive, work... laying flat is my only relief. I pray for all of us suffering. Praying for change in doctors educating themselves in this area. I feel we have to earn our way through our suffering to get to the good doctors and by then so unnecessary damage is done. Love and light to you and yours 🦋

[@ghents565]

Have you had a brain and C spine mri for Chiari malformation or hydrocephalus, I have booth. Here if you want to talk.

[@ghents565]

Cleveland clinic I feel is a joke. So sorry.

[@denisesynder2799]

@@ghents565 I have not. I’ll ask about that, I’m trying to find another dr. I have actually had a more difficult time staying upright since the blood patch failed ( I believe) last night I passed out I don’t know how I landed but I’m in a lot of pain and not being able to be up long. I’m so mad. This week I needed to be somewhat normal. I have my daughters graduation another an engagement party. I’m so useless.

[@later_taters]

" I don't know how I feel but I feel alot of it" my new phrase when I feel like sh*t!

[@MommingwithMigraine]

Add that to the merch list 🤪

[@later_taters]

@@MommingwithMigraine definitely!

[@Azariane]

Your comment about "invaluable" stayed with me till morning, and here's what I think is the reason for that "in": valuable is the ability to perform the action of measuring value. So that invaluable thing is SO important that its value can't even be measured. Thus not valuable, invaluable. By the way, you guys are the sweetest, and your baby daughter is beyond adorable!!! You all deserve each other, I mean it in the best way possible.

[@MommingwithMigraine]

Thank you kindly 🙌🥰 and that makes sense. I feel unsure like that on many words these days... I typically use them correctly but don't remember the full context of them at the time.

[@crystalkeara8868]

My head pressure/migraines go away when laying flat too. I did the 48 test too and it worked. All my symptoms go away when I lay down. The vertigo and confusion after being up for a while are the worst. The longer I’m up the worse I get. I’ve been suffering ever since my 2008 just before my neck surgery. Never been the same since. This past year I win Ed and renovating my house which caused me to be bedridden

[@moniquekangas7746]

I am so excited for you! Having doctors that listen and have ideas on how to give you a diagnosis is amazing! Feeling validated is one of the best feelings I have ever experienced. I recently found out that all of my “neurological” symptoms stem from PTSD. This has been difficult to come to terms with but my new treatment is working and for the most part I am feeling so much better! ( I am currently expierencing some of the wort fatigue in my life coupled with extreme pain but we are getting through this!)

[@Em920]

I'm happy you're feeling better Monique! Sending love ❤

[@meganweppler3103]

You were an entirely different person at the end on your 48hrs flat!! Even the sound of your voice changed, way less raspy. I’m sure you already have, but make sure to show your doc the video of you standing (looks like you possibly had some nystagmus) could help them with your diagnosis as well :) Hoping you get an end result that improves your quality of life and takes away all the awful and debilitating symptoms you’re experiencing ❤️❤️

[@silverdeer2515]

❤❤ so it was even crazy to see the difference in the way you were able to focus on the camera and talk to us. That we could feel you being more present. I hope the coming back of the symptoms wont be too intense ❤❤

[@anna121ist]

Jen- I’m literally crying watching the changes throughout this video! You are amazing! I can’t wait to hear about the results. So amazing for you. I’m going to see if I can dry my tears & finish up

[@MommingwithMigraine]

This is so emotional, thank you for supporting my journey ❤

[@cavlizzy]

Wow... I can't imagine having to stay flat for that long. I would have needed some word puzzle books & TV to occupy my mind. Can't wait to find out the next step in your process. Thinking good thoughts for you!! 🥰

[@rebeccahwark8838]

Hi. I am new here. Your daughter is adorable!!! I don't know how you did that test!!! I too get migraines and tons of other not fun stuff that I'm sure you don't want to know about.💜💜💜

[@erin723]

Glad you were able to do this before Baby started crawling! Hope you get some helpful answers from this fun test! 💞

[@MommingwithMigraine]

RIGHT???!!

[@wanda9740]

Oh my word, what an awesome test to enthusiastically jump into! What an eye opener. You certainly were looking more and more healthy as you progressed, but the decline was painful even though you declared it cool! Girl, I'm praying they find every single diagnosis and solution for your condition... I'm dying to see Scientific Jen come on back to ya! While I'm on IG, that's not my jam. I've really gotta figure out how to flip that switch for myself so I'll feel compelled to hook up and hang out over there. Girl, you're beautiful. I loved seeing brain function coming back during the test... also, your daughter is growing like a weed! She's a pretty as her Mommy 🥰 I feel sure your husband is where he wants to be and he'd have it no other way! Appreciate him, as he does you. Holding your family in prayer... To clarify, remaining upright before and after the flat test? Upright as in sitting up or actually standing up? Three hours? Pfttt, Lord have mercy.

[@jadeuneun]

I feel like this 48hrs flat test is gonna be totally worth it!

[@nicoles7652]

I just can't imagine how you felt at the end. I'm excited for you that you found something so significant. But I'm also amazed how you can be excited about getting tremors and losing balance just because it's an obvious symptom now. I wish you all the best in your journey and I'll definitely keep following. Much love to you and your family

[@JessBonomo]

It's awesome you got this test! I'm definitely no doctor, but it seems to be very informative in your case. I'm curious how Buddy behaved while you were flat, did he do any alerts? I hope this helps your diagnosis and treatment!

[@MechEboo7]

Very well put together video. Actually it makes a lot of sense that you are/were/will be again a scientist with how you look at things and analyze facts. Maybe that’s one reason I enjoy your video so much. It was so nice to see the 48hr test was worthwhile!

[@frankbruno7122]

Hey there, this was really amazing to watch.. but it made my neck hurt by vicarious experience.. your two babies are beautiful.. little you and the pup! You do have a wonderful husband.. but then looks like you are a wonderful wife. You do not owe him.. you owe each other your love and compassion.. well done.. 48 hours took courage.. truly! Very best wished and prayers for the 4 of you! Frank from Boulder, Colorado

[@tallyranger7964]

Wow! I am astounded by the cognitive change in you towards the end of the test, and then after standing up again. Just wow! I hope this brings something conclusive for you. I know what it's like feeling fogged and confused but I don't have as much of an issue as you do, so it must be so frustrating!

[@Ktya86]

Wow! Wooooow! I can't stop saying WOOOW! Watching the whole process, specially after you stood up, is extremely shocking! I think doctors suggesting this test to people should ask for video updates. I'm keen to see what happens after this long 48h. All the best for you and all my respect for your super husband. He deserves the world and beyond.

[@MommingwithMigraine]

The last 2 minutes is the real mind blow in this video, right!!! Thank you 💜

[@dancingbook1522]

Watching you laying down while laying down because it also improves the quality of my day^^

[@soonfuller414]

Congratulations on making it through your 48 hour flat test!! Couldn’t be happier for you & keeping my fingers crossed that you’re getting closer to a diagnosis, Jen! As always thank you for documenting and sharing your experience with us! ❤️

[@charlottebruce979]

I think its brilliant that you are so proactive in your pursuit for answers to your conditions, its inspired me to do that for a health condition that I have which I need to find the cause of and ultimately a cure.Good luck, hopefully one day we will be symptom free!!

[@nonakabyrd5759]

Ugh only 2 days ago you posted...but so anxious to see what the Dr says!!!

[@MommingwithMigraine]

It's better than last time, that's for sure. Instagram stories knew as it was happening though, that's how to stay up to date!!

[@teddy3282ify]

looks like the 48 hour test was what you needed- i can't wait to hear what your doctor says about it! keep us posted!

[@AvidusReader]

you were so clear during the test.only 26 min in I can't wait to see what you say at the end

[@MommingwithMigraine]

To me, the last 2 minutes of this video sealed the deal (or whenever is after I got up) I was like, we are ON TO SOMETHING.

[@andrewwilmoth6500]

I too lost a lot of the technical laboratory vocabulary when I developed a positional neurocardiogenic syncope. I had a brain fog that could last for days or weeks too. Eventually I had to leave the lab environment. Add to that a lot of other dysautonomias and I really understand Jen's frustration. Even just communicating what is wrong is a struggle.

[@MommingwithMigraine]

Oh this meant so much. I'm so sorry it happened to you too.

[@dees3179]

This was fascinating. Thanks for the millionth time for the ginger tip by the way. Game changer.

[@lemonbalm3781]

love your channel!! in case you have to do this again, can i recommend "lazy reader" glasses? they let you look forwards while lying flat!

[@TaviRodgers]

What a cliffhanger though! While this is clearly giving you life changing information (and I'm so happy for that!!) I'm also expecting that this was the calm before the storm. I'm anticipating a doozy 😰🤕 I know this happened a couple weeks ago but I'm still wishing you luck! 💖

[@Godelieve2005]

Loved your laugh at approximately timestamp 25:20. You looked so carefree for a second.

[@lagemgem2001]

🌈 is such a doll 🥰 Really hope this test gives you answers. You deserve to live a life free from pain.

[@kbellmurray]

I haven’t had a doctor ask me to do this yet, but this inspires me to try it myself anyway. I was thinking about it.

[@carolwalters6469]

I see so much of me in your descriptions of how you are doing. I have chronic migraines, fibro, lupus (both systemic and discoid), neurocardiogenic syncope, dysautonomia, tremors,and a bunch of other stuff. BTW, my birthday is coming up too but I'm going to be 50!!! Yikes!!! My migraines get worse when I lay down for bed at night. Neuro has me checking my blood pressure thinking it would be high. NOPE! It crashes to really low. I've lost a lot cognitively too and its so frustrating. I'm interested to see what your treatment is going to be from these results. I've been thinking that we should look into a service dog but I don't know how well our current furry boys would handle a 3rd dog.

[@1tennismama]

That hubby is a keeper ❤️

[@iw9783]

Dear Jen, I would like too thank you and of course your husband for making this video. But also your baby girl and Buddy, because they are so stinking cute! Feels a bit silly to say as a subscriber, but it was so emotional to watch. When you posted your ‘am I misdiagnosed’ video (sorry if I got the title wrong), I was a little freaked out because you gave me a lot of new ‘things’ too investigate into. And now you gave me even more. Can’t thank you enough, ❤️ Ismay

[@YRTheyDoingThis]

I want to thank you! I have been so confused as to the very high pitched ringing in my ears, confusion, the ringing that turns to fuz, the tingling in my face and arms, the colors, and two ER visits, one where I was paralyzed from the neck down, and both where I was diagnosed with TIAs, despite every scan, every EKG, etc....and during the two ER visits I had a migraine. I have always had migraines, but less the older I get, but now I think I am still having migraines without pain every time. I now know what to talk to the doctor about!!!

[@Em920]

Good luck and hopefully you're on the right track to a diagnosis!

[@YRTheyDoingThis]

@@Em920 thank you!

[@featherslettersandseeds414]

The changes you went through during the course of this video were definitely interesting to see. As someone with D.I.D, and migraines, there is a difference in "personality" and cognitive function...even without switching alters, between migraine or no migraine. I recall when I first tried a medicine that actually worked...I could think again, it was awesome. I hope all of this helps your doctors get you treatment that gets you to recovery.

[@ColombinaSR]

Omg Jen, i'm so happy they are letting you do some test to figure out if they can help you with your migraines, 💐greetings from a Colombian in the Netherlands ❤️😁

[@MsCanadianLeaf]

I can empathize with having a CSF leak... I’ve had three lumbar leaks. Two of them were resolved with surgery (a lot of surgery and two different surgeons). The third one I have right now and I’m just waiting for my surgeon to be able to schedule the surgery (covid is still bad in Ontario where I live) to repair the tear in my dura. The first leak was really, really stubborn and on the third attempt to fix it, my surgeon had me lay completely flat with the head of the bed lowered (to keep as much CSF out of my lumbar area as possible) for three weeks in an effort to fix it (it didn’t work unfortunately). I’m being told I’ll be flat for about a week after this repair... having lots to do is key! Can’t imagine doing it with a baby though. I hope you get some answers!

[@Em920]

Good luck with your surgery!

[@MommingwithMigraine]

Gosh, you've been through so much. Sending hugs 💜

[@maschabright157]

This video was not only extremely interesting but also felt like such a huge step for you, Jen! I loved watching that. And props to you for talking about your international viewers (as I'm a part of them being from Germany)! Honestly, I learned so much through your videos about chronic illness although this topic was quite far away for me before. Really appreciate, thanks!

[@22MsRue]

Thanks so much for sharing this video! I'm getting ready to do the 48hr flat test, and your video really helped me have a better idea of what to expect. Hope it helped your doctors!

[@carolrichey3381]

I just saw your post by accident. Haven’t watched all your videos. Have you had an MRI to check for Arnold Chiari Malformation? It’s common to have POTS along with ACM. You would need to find a neuro who has experience looking for it- it can be missed and is commonly overlooked.

[@lishy_jan_2381]

Oh my wow!! I'm so glad that the test had such a positive outcome (interns of how it will help) I'm really glad that you were able to get the results needed and that you were able to feel so great. Its really refreshing seeing you so happy and energized, I'm hoping that from this test your able to find a solution with your doctors that will help you to feel this energized all the time!! Also loved the "positional allergies" you added in XD

[@MommingwithMigraine]

Make light when we can 🥴😄 thank you so so much!

[@NoFeArChiC2]

I felt like there was an ease about you as you were laying down that was very clear, and that we don't see so much otherwise. Almost as if your true personality was shining - unburdened and free. It's unfortunate when we go through things that could have been prevented or treated way sooner, but sometimes that is life. Don't focus on that part. Focus on the now and getting your life back because that's what matters. I truly hope this is a turning point in your medical journey. I'm so proud of you for not giving up, for fighting for your health when others wouldn't. Keep at it, girl! Praying for you, hugs!

[@tinadill284]

She’s getting so big!! And she’s ssssooooo cute 🥰

[@MommingwithMigraine]

Thank you! Her face melts my SOUL 😩

[@lovebyremission9873]

Thank you for sharing, Jen! I'm now concerned that I will be asked to do the flat test someday for POTS and chronic migraines, haha. This was a great video to watch! Major props to both Buddy and your husband for taking such good care of you!

[@10prozenthimmel]

All the best from Germany for your further diagnosis! I started watched your vids because of Buddy (because I'm training my Sasha to be a school dog and was interested in dogs with jobs), and then I got hooked. I hope this test helps you and O hope they'll find some procedure they can do to keep your brain fluid where it belongs. Keep those good spirits!

[@anamariaarroyo106]

Jen thank you for sharing your journey through all this, I don't know why but seeing how happy and alert and curious you were in this video made ME emotional and I've never even met you haha. I hope these tests can give you the answers you need to feel like you again

[@jeanmorgan5410]

I loved this flat test I learned a lot from it. You inspire me to keep going to hangin there you deserve buddy he really helps you a lot

[@PaigeA6741]

Wow it’s amazing the difference this made for you. What are the next steps? Are there long term solutions for it once you get the official diagnosis

[@ellabloemendal1387]

I have hormone actived migraines. Its hard but Because of the menstrutionpil. I have them 3 days every 2 months. In stead of 2 weeks every Month. I get Why u want answer , stay strong mommy u are Amazing!!! ( englisch def not my first languea(?) but trying very hard Hihi )

[@clairestandley82]

I really really hope this is the light at the end of the tunnel for you! You've worked so hard to advocate for yourself and do your research. I hope you can be healthy soon!

[@MommingwithMigraine]

Thank you so much! Something tells me this is only the beginning... but I hope I'm wrong.

[@naemilianacollins1747]

English isn't my first language either and I am far from perfect but I think learning German is much harder than learning English. The German language is very logical at one point and very illogical at another point so I think it's kind of hard to understand how it works :) Congratulation!!!! I am very happy for you that this test worked and I hope you will get the right prognosis in the future :)

[@mandimoo87]

Your baby is so cute, you can buy "wings" for those bottle that are easier for babies to hold and feed themselves. And yes she is definitely a mini me. Your Dr needs to see this video before they ask another person to do this test, but I'm glad you did it because I think the results will really help get the diagnosis you need. I'm really thankful for your husband too, without him we wouldn't get to watch you ❤

[@Crowcifixx]

Truly wondering if you have been scanned for Chiari Malformation also! Either way very interesting findings. Glad you are closer to answers! I am praying to find some answers for myself this year.

[@love4daydreamer]

Thanks for letting us watch this about your journey!

[@Sophie-um4vz]

This is so exciting! I can't wait for the following steps!

[@courtneyhimes2063]

Thank you for sharing your journey with us 💕

[@MommingwithMigraine]

Thanks for watching!

[@Sophie-kn3gh]

I hope you can find some more answers and a great doctor! Wishing you the best :)

[@elainehardy3502]

Do you also have BPPV Benign paroxysmal positional vertigo ? That's when crystals come loose in the ear. I have that so much. I feel I have a csf leak but I know how the doctors are. My husband is a diabetic and I used his monitor and checked my nose that runs constantly. The number was 256. I watched your other video today and I'm so happy for you. I hope you get the diagnosis and they can fix it and get you better. I think you should sue for pain and suffering and calculate all your wages you have missed from not being able to work.

[@RiverWoods111]

Audiobooks would have been a great help for laying there for that long, also a TV or something to watch. Your body would still have been screaming at you for laying down too much, but your head would have had some stimulation. Maybe you just weren't showing us that part of it. Although, TV and screens may have not been good because I am sure they play into my migraines sometimes.

[@traceywye6504]

All ways rember when doing these tests are meant to help!!! The fact that you volg this may also help. Hope this helps determine what is going on Good Luck.

[@rebekahlynhenna7453]

Wow! So crazy! Seems like the 48 flat test went really good. Did you really go the whole time without any migraine? If so I wonder how significant that might be. Hoping for the best for you from this and that it can help point the doctors in a really clear direction!

[@LittleDergon]

Okay, but I do the same self treatment of laying down when symptoms arise that you do and I know I think clearer when I'm horizontal 😳

[@crystald3655]

Diet juices/ sodas contain artificial sweeteners which can trigger headaches/ migraines. So if you live with them, you may want to avoid them. I've also found raw onion and/or garlic triggers headaches/migraines. Alcohol will trigger them for me as well, so will aged cheeses, and lunch meats though hot dogs/ braught worsts and other sausages also bring them on. Along with thunderstorms/rain. Thought I would mention these since I saw a couple of what I've found to be common/constant triggers for headaches and Migraines in this video.