Hey guys, welcome! I'm Jen, happily married mama to two little girls and service dog Buddy. I am a suspected CSF leaker with diagnosed hypermobility and high cranial pressure (IIH), chronic complex migraine with multiple aura, POTS/dysautonomia, orthostatic hypotension, and Raynaud's. I am disabled daily by these conditions, but I don't always "look" nor "act" sick.
On this channel, I'm spreading awareness about DIFFERENT types of disability... they don't all look the same! I'm also dropping info, sharing my tips, and generally going about normal life... proving by example that you can live happily with chronic illness. I hope you enjoy learning a bit about what it's like to live in my strange shoes.
BTW, nothing here is medical advice. I have a degree in biochemistry but not in medicine! My channel is anecdotal and meant to help you find areas to do more of your OWN research. Always talk to your doctor.
This sounds like my story. In 2021, I started having all these crazy symptoms, and like you said, the symptoms cause the anxiety in our case, not the other way around. It took me 2 years to get a diagnosis. There are still times when I question if it really is POTS or something else. I get so many of the same things, but sometimes, I dont even have a trigger. I will be sitting there, then suddenly, I feel like I can't think, I get irritable because it feels confusing and sounds are just so loud. I used to get a lot of weird face stuff, but not so much now. I think the altitude of Colorado just didn't work for me because that is when it was at its worst. I'm in AZ now, so I don't feel awful everyday.
I am having a liquid leak that goes from my nose to the back of my throat. It does not come out from my nose. I am so concerned two doctors told me its just allergies. I am still anxious. I was told by the doctor that I am acting like I am uneducated person. Thinking that it is a csf leak.
I have been strength training for over a year now and have noticed significant reduction in migraine frequency. You don't have to lift the most in th gym just what's challenging for you with a program you'll stick with!
I know this video was 3 years ago but I have to say…. I can’t wait to be able to have this reaction- when a doctor finally believes me about my symptoms. I have a new doctor starting next month and I am tentatively hopeful because it’s a nurse practitioner in their 2nd year and I feel like someone in that position is going to be more up to date and also more prone to refer me to specialists for tests. I’m so tired of being told it’s all in my head. These symptoms are not all in my head!!!! I’m so glad that you got a diagnosis and they started listening to you. And yes, it is so wrong. So so so wrong.
Thankyou so much for this information. I've been taking emgality for months and it has been a miracle drug, I've been able to live life again....however....this very much could be coincidence but about the time I started taking it, I began having lower back aches. As time went on the pain became worse and worse. It became very severe. By the end if each month when it would have wearing off my back pain subsided. As soon as I took the next injection, the severe pain came on the very next day. This happened twice and the pain is so severe that I've been too scared to try it again. I'd love to know if anyone else has had any similar experience.
I’ve been watching your channel for a few years and I am so incredibly happy to hear that you are now a Christian with a relationship with God and how you are experiencing that His desire is to nudge and guide you (might have teared up a little from happiness during this video). I’ve always loved your logical mindset and how you think through things, so in case it is helpful I think about God and science in this way: God created the patterns of science and nature and He loves it when we study what He created. Because He created these patterns of science and nature, it is actually logical to come to the conclusion that He can “interrupt” these patterns with miracles/things that seem unexplainable, because the Creator is more powerful than the created patterns. I’ve seen Him do awesome things not only in the Bible but also in my own life where His power is shown to be greater than what we expect to be possible scientifically. My mom and dad were told by doctors that my mom wouldn’t be able to have kids because of severe endometriosis, but they prayed and received prayer for 16 years and I was born when she was 40 years old. Praying for you to stay close to Him and to continue to get clarity from Him in your medical journey, youtube decisions, and how to walk out life with Him.
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The ear and throat pain! OMG. I am just now in the process of being diagnosed with IIH. Yesterday I had my Lumbar Puncture. Since the procedure, I have felt the best I've ever felt in YEARS! My ear pain, throat pain, running nose and eyes, my neck and shoulder pain, exhaustion, brain zaps gone! My vision auras gone! My constant feelings of nausea and dizziness, gone. For YEARS I've been told my problem was allergies, hormones, and anxiety/Today is probably the first full day I've felt 'normal' in probably 10 years.
Three referrals: see The Breath Institute, MEWING and orthodontist palette expansion ( technology has improved) along with Myo functional therapy is a MUST.
I’m so glad to find your channel. I believe I have a csf leak resulting from post gas to the head w:/ 38 special bullet still present in basal ganglia of my brain. I deal with horrible headaches daily. I try to explain how my headaches feel like no one understands. Especially the acid feeling headaches. I would really like to personally chat with you. Please reach out to me. Finally someone else experiences these headaches
Hi i am chronic migraine and most hell off symptom's the doctors have no idea i do understand the hell you are going throw i can't get off the bed or couch you go to doctors can't help you at all thanks for your help
100%! As a disabled handler for over a decade, I can't believe how this is still a GROWING problem. My SD has been attacked three times while working in public by fake 'service dogs.' Business owners need to know, at the bare minimum, that if a dog is disruptive, aggressive, or destructive, EVEN IF it is a legitimate SD with a disabled handler, it can be asked to leave. I keep copies of the ADA SD handout for businesses with me every time we go out. So many people just don't know.
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.
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!
am having a bad headeche and am vomiting alot , i have a clear fluid running out of my right nose and also the fluid is going down my throat i feel really nauseous, i have verey blurred vision and also i have dizziness .. at first i went to a doctor and they discribed allergic medicines but it done nothing, then one of the dr said that i have to consider "was diagnosed with bacterial meningitis." Spically that i have bad infection in blood " and a number of drs says that this fluied is (csf leak.) am really getting sick forget to mention that i did a brain surgery And after a month the fluid starts to apear, i did mri but it shows that everything is normal, please help what to do !!!!? Am depressed and i will do anything to heal ..!
Just a heads up for everyone. Tie tie can result in a narrow palate leading to breathing and tmj issues in adults. Your tongue wasn't up against the top of your mouth during developmental years, so you didn't grow the bone. 99/100 orthos are afraid to do anything to help with this. If you're now in a position where you have sleep apnea, tmj, narrow smile, crowding, etc, do a consult with Dr. Ilya Lipkin. I was referred to him by another ortho and traveled 4 hours to see him.
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.)
Watching this super late on my tww. I'm quite hopefull this time, fingers crossed. My cat became super clingy as soon as I became pregnant with my first and never really stoped because she is scared of my son and comes in for a cuddle as soon as he is not around. I hope all the pregnancies in the comment went well.
I got a false failure and beat myself up so bad. It was the first test and they said I had diabetes, I’ve been checking my blood sugar and it’s been fine 🙃 I already had issues with this doctor but this was the final straw
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.
Hello! So I have some really rare symptoms and idk if it's either stroke or csf leak since I have both symptoms. I'm a 21 years old male and since someone hit the back of my head hardly (this happened 2 years ago) I started to have the next symptoms: severe headache on the back of my head (in only one spot, specifically the left side of the back of my head) sudden jerking on my arms and legs with feelings of numbness, I produce a lot of liquid from my nose that is clear but it's not as water but more dense, I have difficulty thinking clearly, I sometimes have blurry vision, my balance is weird, and my head feels heavier than before. Does anyone know what it could be about?
I went through ALL the CSF crap, to the radiation into my spine that left me with radiation damage, blood in urine, paralyzed voice box still, which is very dangerous. You should STOP NOW. I had all the CSF leak symptoms, headaches, dripping in nose, loss of leg strength, severe leg pain. It has been 3.5 years. STOP THE DRAMA. YOU DON'T HAVE A CSF LEAK. I have been bedridden since 3/21. I HAVE SPINE DISEASES IN 3 PLACES. I HAVE BEEN TO 7 DRS. YOU NEED TO STOP YOUR DRAMA. STOP. I have legitimate problems and they are on MRIs. You are a drama queen and need to get off here as you are making a fool of yourself
I made a comment one year ago and been suffering from Migraine from past two years. During this year i found out one thing that may be of some use. If possible get yourself checked for Sinusitis or Rhinitis because it an important trigger and the symptoms match perfectly. Those who have migraines also have sinusitis in most cases. Secondly get your blood test for liver enzymes, SGPT and SGOT. I have been taking Liver Aid meds and somehow it has helped a lot. These two things are worth a shot especially liver aid meds for about a couple of months.
Didn't know until recently that POTS was even a medical diagnosis. For years I have been belittled, called Lazy Azz, Hypo Chondriac, Munchausen, Put on, actress, slob but mostly lazy and just accused of trying to get out of work until the server bullying started when I would have bladder problems and not be prepared enough to work a full or extended shift or be self conscious of the excessive sweating and body odor concerns. Or worse. Being accused of workers compensation fraud because you had episodes at work and work sustain mild to moderate reportable injury. It's tough.
