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I say 'I'm hanging in there' I dunno, it's true, anyone could say it, it's light-hearted.

Yes yes yes! Exactly this. You explained it so well! In tears now. Hearing my thoughts come out of someone else's mouth makes me feel understood and less freakish. Thank you.

eat carnivore diet to be healthy

Hope you get better! Happened today to me too

Omg I’m not the only one? I asked a doctor about this and was just told that it was some sort of heightened vascular dilation, but I might need to ask about dysautonomia and POTs…I’ve starred wearing compression garments that are about knee high, but idk if that’s gonna do the trick to stop blood pooling and painful standing 😢

if you say anything but FINE , they will tell you what to do to feel good ! yeah right !

I was diagnosed with this, turns out I've been becoming massively hypoglycemic, like down to 52 mg/dL. I feel like vasovagal and neurocardiogenic syncope are just cheap labels given to young women who look otherwise healthy. Nobody ever looks at the inborn errors of metabolism, hypoglycemia, porphyria, or other real things that can cause these symptoms. I happened to figure it out myself accidentally... And I work at a major research hospital in the Midwest and was kinda ignored for years.

You are so right . I have gastroparsis, RA, AS,,chronic fatigue. I have a friend I can talk to, but most people I don't want to ruin others day. I also don't want to hear your sick again. It's better to stay home with my dog.

Ufff exactly what I am going theough. I am in so much pain today. It took me hours to get up from bed to the sofa where I spent hours to get up and prepair food. My mom convinced me to take the dogs out to the dog park across and while put I was in a lot of pain that I just said I am OK. Only one person kept asking me and I told her how I was truly feeling. I think that she could sense how I felt but not many people can.

Thank you for sharing your experience. I’m in the process of scheduling to have a Medtronic loop recorder implanted due to family history of significant cardiac events, personal symptoms (POTS with orthostatic hypotension, tachycardia, and possibly SVT’s), and a KCNJ2 genetic mutation that can potentially cause long QT. I’ve been using my Apple Watch + Qaly app to record EKG’s when I experience symptoms. Looking forward to having the loop recorder to help in identifying any issues and cardiac management. I love that you’ve named your devices (gotta make it fun), and I really appreciate your positive outlook in spite of all you’ve been through. Thank you!

Thank you

**Nods in total agreement** yep. i say i'm fine when i'm really not, just cos i know they don't want to hear the truth. i used to tell them the truth...but too many times i got accused of..A: making it up for attention, because no one lives like that. & B: others put a look on their faces & tell me im a real downer....or i bummed them out. Or..C: the most popular reply; But you Look ok, so how can it be real?..it must be all in your head because you don't look sick. Yeeeaaahh..ok....had quite enough of that. They ask but clearly don't want to know. It's Fine. i can do that too. i've even asked them to stop asking how i am...but...that also falls on deaf ears. So...i isolate as much as is humanly possible. Turns out..i LIke it this way. Never bored..& since i don't have to conform to anyone else's tastes, i made my home into a Sanctuary. Comfortable & pretty. Now, i spend my hours doing things i love..cooking & baking, gardening, reading, dancing, upgrading & sharpening my computer skills..& crafting. Tons of crafting. Dropped farcebook, kept twitter/X...where i have a lot of friends & here on youtube, where i have even more friends. So, yeah, i'm still socializing...just doing it on my own terms. When you have a Chronic illness...you do whatever you can to make life as livable as possible. & for many of us...isolation is an integral part of that.

Had my loop put in last May. Almost a year now i've had it. Found out last week they'll be removing it next month, almost a full year. But found out they'll be putting in a Dual Chamber pacemaker. So my loop helped as far as me getting a diagnosis. One metal out and a new one permanently. Good luck to all!

How does it look after inserted? is it noticeable? I am thinking for having it done.

Thank you so much for this! Do you know of anyone who had this treatment who had headaches called Trigeminal Autonomic Cephalalgias/Trigeminal Neuralga? Any success? My lidocaine infusion is in 3 days.

I would be so terrified

How long were you on the table

This is my story also

Mine was super painful too. It was worse childbirth to me. it's like five days later and my legs are super weak and my back is still hurting really bad. So I'm gonna say you didn't imagine that pain.

I just got my tilt table test! It says NMH ( NCH ) but I am very tachycardic when I go from sitting to standing all the time and dizzy spells. I’m curious if I have both too

Thank you for your videos I’m currently getting a diagnosis, but I am confused is NMH(NCS) and POTS the same thing ?

I just had one yesterday,worst pain I have ever felt! Felt like my bones, muscles, ligaments and tendons were being ripped apart

its very scary . its like you die and come back to life .

I just did my first lidocaine infusion. Thank you for all the good advice. Hope all is well!!!

Hey. I just saw a couple of your videos. I just wanted to say thank you for opening up to us. I have a couple questions about your lidocaine infusion. I just saw you posted for the first time in a couple years. Hope all is well. Thank you

I've had 2 failed blood patches, resulting in muscle wastage in my left leg, with knee and hip pain, still have low pressure headache, I'm due to see my neurologist on the 1st September, the anaesthetist hit something on the second attempt this procedure is called a blind blood patch here in the UK. There is always a risk to any procedure, good idea to have the doctor explain and tell you what and when they are doing, unfortunately for me I also caught covid whilst in hospital.

20 year old male here. I have been diagnosed with intracranial hypotension for a little over 7 months now. I had to unfortunately endure a myleogram myself today. I went into the procedure only with the numbing needle before hand. All was good until they got deep enough with the needle and I got a lighting bolt shot of pain through my legs almost kicking the doctor in the head from the jolt I made. I then proceeded to faint and have my blood pressure drop to a 70/90 something. My legs went numb and tingly and I was attempting to vomit what food I had leftover from the fast.. I definitely advise against this procedure at all costs, I rather endure headaches everyday than have to go though what I did today again!

similar experience. 10 years of doctors not knowing what to do and what was wrong with me. got diagnosed this month!

And why are you standing if you're going to have another blood patch?

Thank u for this video, I'll be having a epidural blood patch done in 2 days

Before finding out about your leak did to get numbness in your limbs and tingling

Hey. How are you doing now ? I hope your in great health. I was wandering how long did it take you to recover and did the loop really help in further diagnosing your condition. Thanks in advance and keep up the good spirit !

Did u have pain laying down as well

It’s crazy to think that these symptoms were a leak and not really your pots

I’m here right now Lynnea, and it’s a struggle, I’m losing hope - but it’s been amazing seeing you get better in the long run, I hope one day I can get there too ❤❤

Lynnea I am so glad to hear you are doing better! I cried when I saw your latest video. Thank you for your videos! They made a HUGE difference for me in my leaker life! ❤

Im going to have mine implant on july 6.. thanks for the information i was scared but now not anymore...

Hey, i hope you are doing fine !!

Where you get the plume tee?

How are you doing 5 yrs out?

You are a bit of an answered prayer ..my sister was just diagnosed with pots syndrome..she has been suffering a long time without answers and we are still concerned with the diagnosis.thank you and hope you are doing ok

Hey if an epidural steroid injection caused your leak ? Typically during the arduous L5 procedure I'm guessing. There something available new without patches at all.

What about fibrin glue ? Know its used at Duke leak program.

A huge problem on leak channels. Comment's are turned off typically. It makes the doctors seem like liar's.

Please detail patches world's worst headache is like ?

Thanks for sharing. I start my infusion next month.

Hey how did the botox work ?

wait, you're saying I don't have to feel guilty I've been bed ridden 3 out of the last 6 years?

Was soll das heißen, Sie können Fegelein nicht finden?! Dann suchen Sie ihn! Ich will Fegelein sehen! Sofort!! Wenn er sich ohne Befehl entfernt hat, ist das Fahnenflucht! Verrat! BRINGEN SIE MIR FEGELEIN! FEGELEIN! FEGELEIN! FEGELEIN!