My next procedure is already scheduled! Posting the deets this FRIDAY 8/11! 🎉💜 In the meantime, I'm trying to remember to focus on the 3 legs of my stool: kzitem.info/news/bejne/unuh36ilrF-agpg
@aawillma
Жыл бұрын
This is like a Flowers for Algernon thing. That patch was so valuable diagnostically, but damn if it wasn't a cruel glimpse of your full potential. I hope your docs can use this experience to find a treatment path that stops your leak or eases your suffering permanently. I've gone through this "temporary reprieve" thing with my chronic issues and man it is such a bittersweet bitch of a thing. Best of luck Momma J!
@melaniemiller1395
Жыл бұрын
Flowers for Algernon is what I thought of, too. It's how I describe to my dr the short term treatments that got rid brain fog, but the side effects were too awful. Getting the glimpse is cruel, but can also give hope that it's there. Just waiting for the right medicine or surgery
@danielallanillos6712
Жыл бұрын
in my mind you have like a million subs. i hope you find something that can give you a better quality of life, i'll be here to support from the other side of the world
@MommingwithMigraine
Жыл бұрын
Nooooooppppeeee but one day I will be getting that silver 100k plaque 😎💜
@alightinthetent
Жыл бұрын
Ugh I’m so sorry to hear this is happening. It is so surreal and weird and bitter sweet to taste (or retaste) normalcy, then to have symptoms come back. Praying for you and for all of us dealing with those realities. ❤ Also your description of the “gray zone”-of feeling with it, but realizing you’re not so much and getting easily agitated by conversations with those close to you is so relatable.
@katiechurch5175
Жыл бұрын
Sorry this one failed. Good luck on your next appointment! Nerve pain is absolutely the worst. For me nothing helped and unfortunately they didn’t figure out what was causing it until it was too late. Now I have permanent spinal bruising and it can flare up and cause the horrible pain all over my body randomly throughout the day. It is so debilitating. Praying for you and your recovery! Thanks for sharing your journey. It means a lot. 💜💜💜
@katelynnwalker2568
Жыл бұрын
Prayers are coming!
@MommingwithMigraine
Жыл бұрын
Thank you sincerely, katelynnnnnn!!!
@emilyraaserud6437
Жыл бұрын
I’m sad this didn’t stay longer for you, but happy you got such valuable information. What was encouraging to me from this video was that you said that intelligence and ability to be upright is still in there, it just needs the right tools. I think that and that you got to feels some normalcy for the first time in years deserves a little celebration. It really sucks it didn’t stay for long, but I’m hoping the knowledge the ability is still there is encouraging. Yesterday sucked for me and seeing that today encouraged me in my journey a bit, thanks 😊
@sophiegeek1
Жыл бұрын
Sending love, it's so difficult when things don't go as hoped for ❤
@lisacook1074
Жыл бұрын
Relearning normal and symptoms can be hard. But now you can notice more to have flat time. Back to prepatch state does suck. but this means taking the next step in treatment plan though.
@MommingwithMigraine
Жыл бұрын
So true so true. Thank you 💜
@kimkarwick3931
Жыл бұрын
Well it worked for a little wile so there is still hope it will work permanently in the future you got this just keep going
@MommingwithMigraine
Жыл бұрын
You're dang right!
@laurag6996
Жыл бұрын
Bless your heart! Hi When you are “migraine Jen”, and your cognitive function changes, is that caused by the atypical migraine or the spinal fluid leak?? Thanks for your videos 💜
@MommingwithMigraine
Жыл бұрын
I just recorded a whole video to answer this, wooooooot! But long story short there are migraine cycles mixed in.
@LoveAuntAshley
Жыл бұрын
That sucks that the first blood patch failed Jen! Hopefully the next one will stick! Praying for you! Is that an Emotional Support Toy? (what I like to call I don't know the real word for it but my counselor suggested I get one for when my anxiety and PTSD rear their ugly heads) I also have an ESA, my 1/2 Black Mouth Cur, 1/2 Jack Russell terrier but she's not certified or anything she just seems to have a good sense of when my anxiety and PTSD flare up so I just call her an ESA. She's good but she is a terrier so she is high strung.
@MommingwithMigraine
Жыл бұрын
Thanks!!! Not an emotional support toy, just a couch decoration, but it adds visual interest if I am fiddling with something 😘💜 ESA doesn't need any special training. I'm so glad your pup helps you 💕 💜
@erictaylor5462
Жыл бұрын
9:40 I can almost see a buffering wheel on your forehead Oh wait, my internet was actually buffer in that exact moment.
@meganvalek2690
Жыл бұрын
Hey, film laying down if that's what you need to do. We still love you! 😊
@MommingwithMigraine
Жыл бұрын
You're the best! It's happened before, maybe it'll happen again 😅
@kindululu
Жыл бұрын
Wishing you all the best. I will watch your videos even if you lay down. Be as comfy as you can be, we're here for you wishing you well.
@erikavaleries
Жыл бұрын
What a rollercoaster. Great news about the myelogram! I just got offered a cisternogram! I’m over the moon! I didn’t give up following your example. I know we will both get more answers!
@MommingwithMigraine
Жыл бұрын
😭💜
@sarahkwast1250
Жыл бұрын
I am sorry the patch failed. 😢 I know how hard it is emotionally to get a taste of a better normal, then end up back where you were for so long. I had a similar situation when I first started Mounjaro for my diabetes. At the third week I was able to walk 2.5 miles, eat a meal with meat, then immediately walk another 2.5 miles without being winded or POTSy at all! Then my body adjusted to that dose and, by the 9th week, I was back to my old normal. It was devastating! I didn't understand why I wasn't able to maintain that energy level anymore. But I had to keep reminding myself that, even if my current normal isn't as good as that short glimpse, I still need to celebrate the little things I CAN do right now. And with the higher dose of Mounjaro I am on now I have seen steady improvements. I am still not where I was on the third week, but I am better than I was 3 weeks ago and that is worth celebrating! Keep celebrating the little victories and work towards long term improvement as it happens. You are the best Jen exactly where you are right now, and I admire you for sharing these ups and downs they come. ❤️❤️
@teresaparvin7327
Жыл бұрын
I'm 1 and a half weeks post my first patch. Relapse is my biggest fear.
@MommingwithMigraine
Жыл бұрын
Omg! Congrats on your first patch. Was it targeted? How do you feel??!!!!!
@teresaparvin7327
Жыл бұрын
@@MommingwithMigraine thank you! Mine was also non-targeted. They used MRI evidence of Tarlov cysts along my spine. And the neurologist had them patch me at T-10, T-11 where the largest cyst was showing. We are not certain the exact leak spot, so it's a guess based on that. So far my headaches have diminished. I had what they deemed a slow leak. So they only used 5 ML of blood. It sucks trying not to bend though! Seems impossible.
@theseventh5204
Жыл бұрын
Its best to avoid anti inflammatories post patch as you need the inflammation to heal the defect. Its so hard realising a patch hasnt held. Hopefully you wont have to wait long for more treatment. Sending hugs.
@MommingwithMigraine
Жыл бұрын
In rebound high pressure it's just what I needed!
@fernshepherd3416
Жыл бұрын
Once again, so many symptoms you're describing are things I experience.... Like "that sounds familiar", "that sounds familiar", "that.....". Little things that doctors usually completely dismiss because each individual one is "little". Scalp pain! Face drooping! Getting dumb when I'm upright! Falling asleep all the time! I never really stopped thinking I had a CSF leak but this makes me think it's time to bring it back up to my doctor... I'm sorry it didn't work long term for you! I hope your future stuff goes better
@MommingwithMigraine
Жыл бұрын
Oh gosh i hope you figure this out!!!! Have you considered maybe it's positional allergies? 🤭 IYKYK 😂💜
@laurie6332
Жыл бұрын
Have you ever watched any of the videos on YT channel @Caring Medical and Hauser Neck Center? There are many videos, and Dr Ross Hauser is so incredibly good at educating through his videos I thought they might help you unravel your medical problems. It is so hard in today's world of having to figure out what is wrong on our own, otherwise we can spend so much time going from doctor to doctor. Anyways, you are really well spoken, and clearly have been educating yourself, but Dr Hauser's videos might really help you go in a different direction than only focusing on the patch treatment. I am not discrediting you have CFS leak at all, but there are so many other reasons it could be happening. I do not know your story completely (I will have to watch your videos in reverse) but your migraines, the brain fog, having 2 babies close together, and the myriad of symptoms you are combating just made me think that you could perhaps find a whole new road to travel in your quest for good health. Dr Hauser is in Ft Meyers FL. I was caught in the same circle you are with upright posture causing migraines, clear liquid draining from one side of my nose and one eye (both on the same side) along with many many other symptoms that I could not put together. Dr Hauser has many shorter videos, and he also has a couple that are 3 hour webinars. He is excellent at explaining, and shows diagrams. He is a caring and gentle man. I've learned so much from him, and still go back an rewatch his videos as I need. His focus is in the UPPER CERVICAL care. It is amazing just how much he knows. He is like an encyclopedia. Just a suggestion for you. When we are suffering and Drs gaze at us with no answers, the only route to take is to educate ourselves. Living life laying down is no way to live. I am amazed you are caring for two "littles" at the same time as trying to heal.
@MommingwithMigraine
Жыл бұрын
I've heard of caring medical before, and remember it sparking my interest! 🤔💜
@erictaylor5462
Жыл бұрын
Are you sure you stopped dripping? Maybe it just came out if the wrong nostril for a while. Somewhere someone just got a runny nose for no reason.
@DMHCre8
Жыл бұрын
Ugh, man. I really wish the patch had worked for longer. I'm bummed for you but also hopeful because the fact that it initially worked seems like a sign you're getting treated for the right problem. I just hope there's a long-term solution.
@marienkaefer8237
Жыл бұрын
On one hand its so great to see, that alle abilities are still in your body. I hope, there's a way to really keep it. On the other hand it might be very frustrating to see, what potential you can't access to right now. (reminds me a lot of my depression coming and going) I send you hope and a big hug, if you want. You are so great!
@parkertruluck
Жыл бұрын
I’m sorry your back to your old normal, I hope you can in the future get back to what you got to experience for a couple of days, and I hope that you got to enjoy some of the time when the patch did something.
@MommingwithMigraine
Жыл бұрын
I did enjoy it so much. We have options. Thank you kindly 🙏 💜
@erictaylor5462
Жыл бұрын
11:40 I would love to know if Buddy noticed this break and if he did what he thought of it. If it were me I think I'd be, "I haven't smelled a migraine coming in a long time. Am I missing alerts?
@MommingwithMigraine
Жыл бұрын
When he alerted me for the first time after a week of nothing, he got zoomies after 🤭
@erictaylor5462
Жыл бұрын
@@MommingwithMigraine He was thinking, "I missed nothing. I'm still a good boy!"
@VernCrisler
Жыл бұрын
Hi Jen, Hopefully, the doctor can find the point of leakage and get you fixed up for good. No one should have to suffer this much.
@MommingwithMigraine
Жыл бұрын
I appreciate hearing that. I hope we can find the leak, too 💜😞
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