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Did it changer the way you speak at all?

Apparently they burn adrenal glands out neurologist wanted to treat my migraine in the body with it

So I was just diagnosed with POTs a couple days ago but when I was getting my test done they said my BP dropped really low and I felt super dizzy and felt like fainting. I feel very lost with everything going on because not too long ago I was also diagnosed with HATs which I still know very little about. I spend most days in bed in so much pain I don't even wanna move so any tips would be greatly appreciated!

I’ve started watching your videos, and remember somewhere you mentioned being misdiagnosed. What were you misdiagnosed with? You give great explanations. Thanks for the videos.

We had to retrain our beloved Dexter as well. He passed last week. We are looking forwards to training a new dog, after we find a pup. So watching. Because I will need to train a new pup

Have you still searching for diagnosis? I skipped some of your videos so may miss some updates. Have yoy had Lumbar puncture done? Also Upright MRI with Flexion-Extension and Rotational CT.

I have suffered with what you were talking about for years and they treat you like absolute crap! Like you’re a crazy person, like you don’t know what pain is, like you don’t know what a real problem is it is awful. You just helped me make another doctors appointment, I think I am going to address at first occipital neuralgia and cervical spinal stenosis and then I’m pretty sure on top of that. I have what you’re talking about as well. I’m pretty sure I have a couple of terrifying things together. It’s awful that they let me be untreated.

Young, beautiful lady - you are absolutely amazing! Thank you for sharing such helpful but extremely personal information. xx

Yes because my triger for my vestibular migraine is stress and anxiety because 1 out of 2 times I got anxiety then after like 10 20 min after that I got my migraine symptoms or if I'm stressed it's also a part that I can get a migraine

Unfortunately, there really is no complete solution. We can give up our rights and pass laws, but it will never fully solve the problem. Unfortunately, there are and always will be people who break the laws and take advantage of the system. There are things that have been illegal for centuries, but people still commit these crimes. It is not just service dogs that get faked. People fake needing wheelchairs, crutches, and even white canes. It is horrible that people do this. The best we can truly do is educate not just that it is illegal but exactly why it is bad to do this. Try to get people to understand everyone's view, whether it be a store and their employees view or people with disabilities view and the harm this stuff does.

Wow this is great! Thank you for sharing. I was admitted to the hospital with these symptoms because I looked like I was having a stroke! Vestibular/Hemiplegic migraine.

My biggest POTS symptoms are super chronic low blood pressure. I don't get a high heart rate. I get adrenaline dumps all the time I call them my hell on earth. My adrenaline dumps come out of nowhere. I get super anxious and afraid I am freezing to the point of teeth slamming together. Major brain fog and disorientation. I feel like I am going to pass out. The bed feels like it is moving and I am going to fall. I get nauseous I get loose stools and I have to pee a lot over and over again. This will make me weak and have a hard time walking my house for a week or longer. I will have smaller adrenaline dumps on and off for that week or longer. Plus tons of panic.

thank you so much for sharing 🤍 listening to you has helped me so much over the past 6 months. my first blind blood patch is this thurs! you’re awesome c:

Ty very much I’m going thru this right now

Thanks so much for sharing. I have such a hard time taking pills. I am going to get some of this!

Oh I don't have positional headache.

Sounds like what I also have, thank you for telling me the test. I don't trust doctors because of gas lightning and othe issues. I have a connective tissue disorder. I won't have surgery. I'm also old , and it's intermittent. And I don't believe it's as much as you are having.

12 years of misdiagnosis so far. "Advocating"... Gets you ignored right away.

What is the purpose to stay behind you

I feel like I may have POTS or MCAS. We need more resources out there for those recently diagnosed ♡ Do we know anyone who has the knowledge and need a website as a thought leader?

I rarely faint just presyncopy or brown out. I usually just go lay down.😮

Compression pants or leggings are helpful also.

Get the child's weighed blanket, it's not as heavy. I through mine out because it was causing dislocations

Compression leggings and pants are also good, but hot!

This is exactly what happened to me after covid. I have pushed for 2 years with new peripheral vision. Was told ("you've always been like that, migraines"). I am now at the point of Cushing's Traid after a spinal tap injury/leak (12 months ago).

This is perfect I also need autopilot and weather makes it hard to take my service dog out 100+Degrees

Your reenactment is absolutely spot on to my experiences over the last 30+ years of looking for answers. I'm 52 now, and just saw 3 new specialists- and once again was told it's anxiety, adhd, and now menopause (it's not- I'm not even in perimenopause yet according to my labs). I spent my best years searching for answers then started researching on my own. I have had several doctors agree with my insistence that I have h/eds, dysautonomia, hydradregenic POTS, and possibly MCAS based on my "mystifying" blood work... but then they are like, "here's a bp med and antidepressant rx". 🙄 I have the adrenaline surges, sweating, dizziness, fatigue, pain, nausea, headaches, palpitations, wild swings in bp too high or too low, high HR, high RCB, can dislocate pretty much any joint by just breathing, and so on. I get a lot of "stop going to Dr Google" and eye-rolls. Fine. I decided to get multiple certifications instead. They still don't take me seriously (naturopathy is as respected as google - who knew?) But, I'm better armed to advocate and take care of myself.

Facts happen to me with my MIL dog she started patting my belly gently and sleep on my stomach

I see this is from 2yrs ago and hope you get this message. My daughter is suffering with migraines from 4th grade to current sophomore in college. I keep telling the doctors that she has something else going on. No one will listen. Took her to an ortho to look at her. He said she needed counseling. It’s anxiety. I wanted to scream at him. (Not the first doctor to say this) nuero just keeps pushing every drug, shot and Botox known to man. Pain dr drugs…she has most of these symptoms. She is 99lbs so not obess. She had mitral valve prolapse and while they didn’t want to diagnose her with pots, they told her to up her salt. So lost right now.

As far as the straight salt intake I saw 9n another pots video someone would drink the mini soy sauce packets from the Chinese food places. It's not a bad tasting, it still gets you the salt and it's a bit easier to manage so that might be an alternative vs straight salt

My cat knew I was pregnant before I knew so I do believe you

Why the hell did you let anyone talk you into this? you spoke perfectly fine before. This was completely unnecessary and you probably just lost some blood flow to your tongue which is essential for tissue health in your tongue. Very naïve and gullible

Wow you hit the nail on the head. My low and high cranial pressure is quite similar to yours. However when I am in low pressure I am completely shut down and has low cognitive function. I am in no mood to talk just want to sleep. When I am in high pressure, I become irritable, annoyed easily,

With those phone heart rate apps don't put your finger on the flashlight sensor. It gets pretty hot. Learned the hard way

I get this too. There are times when I would stand up and almost immediately fall onto my fiance from what I can now see a possible fainting episode. I've dealt with this since 2011 and have been diagnosed with seizures but this is way more what I'm experiencing. I've questioned for quote some time whether I faint or not. The mini fainting episodes you showed are pretty much exactly what I experience. Most of the time im aware fully (just no movement) or slight blackout. For me it feels like that feeling you get when your in that dream wake state. Your just barely hanging on to reality and your barely able to comprehend what is going on.

Wow! The before and after of your profile is amazing. Is this truly not photoshopped? I have a consult scheduled because my breathing is so strained even for an athletic, active person at a healthy weight, but for some reason I carry what looks like extra weight in my face although I don’t even have much double chin fat. I believe it’s the weight of my tongue dropping to the bottom of my mouth. Even though I’ve mewed for 7 years, which has to some extent helped my breathing I believe when I get this procedure done it will feel much more effortless and what appears to be a double chin will go away as I also have a small chin. Thank you for the informative video.

Oh the Daily back pains with the positional headaches, ear ringing…. And suffering through it knowing you have a leak but your doctors are submissive of your symptoms. All this and I am just 19

It is so great you took the time to do this video. My daughter seems to have this, so this was VERY valuable. God bless you and cure you

I feel so blessed that I only get a couple of days a month with migraines and not chronic migraines. That’s huge. Planning our family was tricky my husband works away . So I’m solo with the kids a lot . Spacing our children out has really helped me be able to manage our life while having a large family as the children become more independent with age . We had two in 3 years then 5 years later had two in two years. We had a still born early this year.

Jen, I was diagnosed with Orthostatic Hypotension 3 years ago. My current doc is now thinking POTS (as opposed to OH). I noticed on this video that you wear a wrist BP monitor. Can you share the brand & model and your thoughts on it? Thanks, Greg. PS> Your videos are helpful!

They are telling me it have high blood pressure and it is cause me all these problems headache vertigo black outs vomiting arteriy disection.5 years maybe longer

So your cranial drip is like really bad sinuses??

I found you by accident, I guess because I’d been looking for videos about vasovagal syncope, which I have, and your videos are in a similar category, and you have some crossover symptoms that I can relate to. I watched two of your videos, and didn’t know much about migraines at all. I shared an office with a woman who had migraines, but hers were very bad headaches. I’d heard about auras, but didn’t know what they were, and actually still don’t fully, even though you said you were experiencing them. I found your videos… and your story… heartbreaking, and relatable in many ways. Living with “weird” symptoms that only occur once in awhile, like my vasovagal syncope events, but which are dramatic and scary, can be isolating, mainly because I’ve found that many doctors don’t know very much about the condition, or when they do, they tend to minimize it because it’s considered to be benign and harmless unless one falls and gets injured, as I did for the first time a year ago. But that’s another story. My question for you, and observation, I guess, is that although Migraine Jen definitely seemed altered… almost like symptoms of a stroke… she didn’t seem in misery with a painful headache. So does a headache not necessarily come with a migraine? Or were you actually in pain but masking it somehow? I’d always thought that a migraine was primarily a severe headache, and all of the other symptoms were in addition to that. Is that inaccurate? I hope you continue to manage your symptoms so you can have a great and productive life. All the best! I’ll keep watching.

Great information! is your code still valid, it won’t work for me, I’m hoping this device will help me

I’m there with you in the comments from the public with the SD. I have had family give me a hard time about my SD. It’s ridiculous but just as much ridiculous as it is people not believing I suffer with chronic migraine disease. I never thought of the walker and it seems like a good option.

So did your last fibrin glue patch not work? You never posted an update. I think I have a CSF leak so watching your videos gave me a lot of comfort but now I’m debating on going to a CSF specialist since it didn’t work for you? I encourage you to post an update for us who are suffering and beginning our CSF journey

Does this mean that your second fibrin glue patch for CSF venous fistula failed? I have been binge watching your videos but I don’t see an update on the last procedure.

There’s been so many doctors I thought would be helping me and haven’t. Such false hope. I’ve been like this for 4 years. I’m 23.

Question , would it be reasonable to get by without a formal command for leave it? And what about wait?

P.s. I just learned yesterday the term Irish Twins is offensive. I wouldn't use this term anymore for my own kids.