Part 2 of POTS CARE Q&A // On POTS Symptom Management, IIH, my "Positional Allergies" and more!
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- Опубликовано: 30 июл 2024
- If you missed Part 1: • POTS CARE Q & A // Dys...
Part 2 is my favorite! There is HOPE!
When I was properly diagnosed and you all saw my rapid improvement, I got so many questions flung my way for Dr. Driscoll. Too many for me to respond on my own! I'm so thankful she was willing to hop on this call to answer these questions for you. She's a wealth of information and I can't wait to have you meet her virtually through this video call!
WANT A DISCOUNT?
○ POTSCare.com - You get $200 off your Individualized POTS treatment if you mention me when you call to book.
○ POTS Care Package - You get $50 off your Package by using my code, MOMMING
My link: potscarepackage.com/partner/m...
○ POTS Care Package Unboxing: • Full POTS Care Package...
○ Supplements: 10% off by using my code, MOMMING
My link: vagusnervesupport.com/?rfsn=6...
○ mommingwithmigraine.com
○ Inside Scoop/Early Access: PATREON.com/mommingwithmigraine
○ Our Daily Life: mommingwithmigraine
You all watched me publicly struggle to figure out what was behind my "migraines" ... well! This is the doctor who CHANGED MY LIFE by teaching me the underlying connection between my POTS, high cranial pressure (IIH), inflammation, immune cells, hypermobility (connective tissue), the vagus nerve (and other gastrointestinal things), and more. When you know the research-backed science behind your symptoms, you can gain so much more control over your life.
After being misdiagnosed with chronic migraine for 5 years, I've now been diagnosed with pseudotumor cerebri / idiopathic intracranial hypertension (IIH). I have been pursuing treatment for IIH through POTS care, and the results have been very encouraging so far.
This is part of an ongoing series of videos about my treatment through Pots Care Clinic (the treatment at POTS care has been life-changing!). I hope this series of videos will help others to recognize their POTS and pseudotumor cerebri symptoms (IIH symptoms) that occur early on, because undiagnosed intracranial hypertension often progresses toward worse symptoms, and throwing salt at POTS doesn't seem to improve long-term outcomes. I also hope that it might help those who are trying to decide whether POTS care is right for them!
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NEW HERE? The LATEST: My Spinal CSF Leak Evaluation (late 2022)
○ Getting OFF Diamox: • IIH + No More Brain Pr...
○ NEW MRI Findings! • SHOCKING NEWS // My OL...
○ Joint Hypermobility: • JOINT HYPERMOBILITY //...
THE BEGINNING: FINDING OUT I WAS MISDIAGNOSED (early 2021)
○ Am I Misdiagnosed?: • Am I MISDIAGNOSED?! //...
○ CSF Leak Diagnosis Update: • CSF Leak Diagnosis UPD...
○ 48-hour Flat Test Vlog: • VLOG + TIPS: The 48-ho...
○ After Medical Gaslighting: • After MEDICAL GASLIGHT...
○ Sick Day Vlog & Canceled CSF Appt: • Quick SICK DAY VLOG, &...
MY PSEUDOTUMOR CEREBRI STORY (late 2021)
○ My NEW IIH Diagnosis: • I was MISDIAGNOSED // ...
○ IIH Symptoms my Neurologists Missed: • Pseudotumor Cerebri SY...
○ Diagnosis Story Update: • Diagnosis Story UPDATE...
○ Diamox for IIH: • Prescription DIAMOX fo...
○ Passing the Tilt Table Test: • PROGRESS CHECK // At-H...
SOME POTS VIDEOS…
○ A POTS Episode Explained: • Play-by-Play of a POTS...
○ POTS & Spinal CSF Leaks: • POTS and Spinal CSF Le...
○ Service Dog POTS Task- DPT: • Our #1 Service Dog TAS...
○ Advice for Patients: • ADVICE FOR PATIENTS //...
○ On Invisible Illness, pros/cons: • INVISIBLE Illness // T...
○ What Fainting Feels Like: • What Does FAINTING Fee...
○ IIH Symptoms that were Missed: • Pseudotumor Cerebri SY...
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NOTE: Though I talk about medical topics, nothing on my channel is meant as medical advice (for all statements, past or future). I am a patient sharing my personal experiences, but I am not a doctor nor am I medically trained. My channel is for entertainment and community only.
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DISCLAIMER: Links included in this description might be affiliate links. If you purchase a product or service with the links that I provide I may receive a small commission. There is no additional charge to you! Thank you for supporting Momming with Migraine so I can continue to provide you with free content each week!
Did you learn anything big from this Q & A? I learned I was wrong about leaky Migraine Jen being low pressure (!!!!!!)... things make SO MUCH MORE SENSE! Did you see it coming? I feel like I should have known. This is the 2" collar I wear to bed every night: amzn.to/3FhXsql and Dr Driscoll's Websites: potscare.com (options for care; my links/codes below) or drdianadriscoll.com (resources/ask a question).
As for POTS Care, POTS Care Package, or supplements, here are my affiliate links & how to get your discounts!
○ POTSCare.com - You get $200 off your Individualized POTS treatment if you mention me when you call to book.
○ POTS Care Package - You get $50 off your Package by using my code, MOMMING
My link: potscarepackage.com/partner/mommingwithmigraine/
○ Supplements: 10% off by using my code, MOMMING
My link: vagusnervesupport.com/?rfsn=6261617.9d93910
If you liked this video, you may like these:
When I announced that I was misdiagnosed: ruclips.net/video/28ZInKrPwdM/видео.html
These are the symptoms my neurologists missed: ruclips.net/video/TK3xZQfd-mE/видео.html
And ALSO don't miss my POTS Care Package Unboxing! ruclips.net/video/tc_LcLiaCJQ/видео.html
Thank you Jen! I’m new to commenting but not new to following. This information will likely change my entire life, much like I hope my own upcoming tinge-tie evaluation will. I don’t know what I would have ever done without finding your channel and access to these resources, seriously. I’m too overwhelmed to say everything I should have by now here, but, thank you. You are truly changing more lives than you know. ❤️
Dr Driscoll is AMAZING!!!!
The best. My gosh, the absolute best.
First, thank you both so much for taking the time to address this. I have a friend who may have pressure issues...she has passed out if she gets up too quickly to make a dash for the bathroom. I will share this with her. Second, the mind blowing info I gleaned from this half of the video is the issues with reading! I had always been an avid and fast reader (I hold many degrees and was an editor way back when) and over that last few years reading has become harder for me. Like you said...my eyes move across the words but nothing is registering and I really have to go slow and concentrate to figure out what the sentence is saying. That's so very concerning to me. I have a very high IQ but my cognitive abilities keep taking a huge hit depending upon how I'm doing physically. I mean everyone I know just expects me to have the answers to their questions and there are times I can't come up with a word let alone a sentence. For the most part I'm good but there are times when if I close my eyes I can see what I'm trying to say or an image of what the word represents but it just doesn't make it from my brain to my mouth. IT'S SO FRUSTRATING! I have also experienced temporary amnesia as a teen when I was super stressed. It scared the hell out of me at that time and I never told anyone about it...shame on me I suppose. The gaslighting is real and I hate to say I'm at the point of not talking with my GP about most issues because of his response (or lack there of). I have a super rare genetic anomaly and he can't wrap his mind around that let alone anything else that strays off the beaten path of health issues. Coming from a seriously strong health care background, this frustrates and angers me. Anyway...thanks again for the videos! God bless!
Omgah….the facedown between 2 mattresses to make your head stop hurting. I’ve done that repeatedly!!!!!! That and about 2 dozen other things y’all mentioned. Thank you so much for the video!
Blessed with this video in so many ways!
Oh my goodness! literally almost in shock listening to this! So many things to talk with friends who I help & my doctors about…
My vertigo is caused by middle ear disturbance. My allegories are severe and numerous. Sinus fluid is often backed up into the small estuation tubes, This makes the vertigo. When I hear someone who has been sick has that condition, i suggest to massage the ear tubes to drain.
Over 13 years of suffering! After watching this I finally got some hope! Until I saw the price! Plus it says can’t take with being on opiates which we’re my last resort because death would have been better than this pain! So between that and the price I feel more hopeless than ever! I feel like I’m done on this Earth anyway. Hopes this helps those it can help. Im done
Praying for you
Such great informative content! Thank you! I have developed this after Covid. Thoughts of beta blockers?
Great video as always!!!
Thanks so much!!
Today when I'm watching this I woke up with my legs feeling like bricks. Just all the blood in my legs. I'm in pain. For years doctors seid it was growing pains. I'm 18, I shouldn't be geting growing pains. Pots patients you know what I'm talking about, just the feeling of all the blood being in your legs. And now I'm watching this listening to how to deal with pots stuff. I have to see how much I can implement. Mabye I can make some improvements to my symtoms.
And once agen with this video I'm just stuned. I have had so menny issues with my nose and not being able to breath at night or when I lay teh wrong way. I recently got allergy tested due to this,turns out I'm allergic to dust. But I doubt that's the whole story after hearing what she had to say about your nasal drip.
Omg yup we know the brick legs over here!! For me it's usually if I'm on my left side. It helps to roll my head over or use a weighted blanket on my legs, or have someone squeeze or sit on the legs. Let me know if you're able to implement anything that gives your relief so I can give the best advice to others possible!!!! You can do this 💜💜💜💜💥💥💥💥 (edited for minor typo)
I relate to the sleep paralysis she mentioned. I used to have that in my early 20's. It would happen 1-2 x a month & was really scary. It would last about 5-10min. & during that time I always had the feeling an intruder was in my apartment. It wasn't until years later that I described this to a Dr. & he told me what it was: "sleep paralysis". I had never mentioned it before because I felt they would think I was crazy.
Wishing you the best 💕
Thank you so much 💓
Literally, snake oil had its proponents. The difference isn’t in the claim, but the proof. I’ve seen other folks mentioning peer-reviewed studies, and I agree. When it comes to medicine, it makes sense to question trendy claims of panacea, right?
So happy to listen to you!
And I learnd: there is always a reason why you are sick. And transfer this to my depression. Because there it is the same. Even thou I often feel like there is no more hope to find the reason and proper treatment.
But there is hope!
Thanks to you both!
There absolutely is hope! And yes, same with your depression. I hope you find your way forward 💜
That can be so hard when you've been sick for a very long time, are getting worse, and have no answers. :( But focus on the hours or days when you feel a bit better, and know that your body is still capable of getting there!
I’ve bought so many pillows also. Can I ask if there is a particular pillow that you use now?
I sleep with many pillows almost straight up and I can only do so on my left side because if I turn to my right it feels like my eye is about to pop. Even sleeping the way I do I have to tired myself out because it’s uncomfortable.
Hey Jen,
I know you mentioned this is the past but I can’t find where I heard it in your videos. What exactly does your doctor have your eye doctor look at? I’m going in for an apt soon and I want them to check those specific things for me. Suspected high pressure abs cranial leak here. I’m trying to avoid invasive testing at the mayo.
Thank you so much to both of you for doing these it was really helpful. One question I do have for the both of you do you know how to avoid getting chronically ill from a viral trigger again? and how do you deal with the fear of becoming sick again or sicker?
Such a great question! When the underlying problem(s) are located and treated, we learn how to manage it -- usually so well that we're not sick, and we KNOW what to do if a triggering infection occurs. I no longer fear another virus, and have had many since my recovery.
@@dr.dianadriscoll1546 Thank you
Can you please list the two supplements again?
What cervical cushion do you recommend?
Hey! So I looked up Dr. Driscoll’s books and the TJ Nutrition website. Do you have any medical literature available on how the ingredients in the supplements work in the body? I would love to run this information by my geneticist who is a subject matter expert on hypermobile Ehlers Danlos Syndrome and POTS.
I'm just a patient, so the only things I have access to are the same things you can find on the website. Out of curiosity I looked into Parasym Plus, the first thing I do every morning, and right on the sales page there's a button for clinical studies/research (this doc is is geared for the symptoms of CFS/ME, but it explains the connection to POTS, CNS, etc and the theory behind Parasym Plus): vagusnervesupport.com/wp-content/uploads/2017/11/Chronic-Disease-Digest-Text-Correcting-the-Missing-Piece-in-Chronic-Fatigue-Syndrome.pdf
If you want info that isn't on the website, you'll have to contact the clinic directly. I'm not a doctor or POTS Care Rep or anything, just a patient sharing my story on RUclips. Take everything I say with a grain of salt 💓
THANK YOU!!!! This was so hopeful to hear. I love nothing more than finding root cause. I’m curious if these treatments would be considered “standard” treatments for western medicine, or is this approach more viewed as “homeopathic” or eastern medicine. I ask because it feels like because this area of symptoms is so disregarded that any treatments will be discounted by typical western medicine professionals.
Erin, this is Western medicine and the condition is in peer-reviewed literature (search for IIWOP - Idiopathic Intracranial Hypertension Without Papilledema), or check out the information in The Driscoll Theory. But because objective markers of IIH are often missing, doctors tend to either forget about it, or not believe it can be this bad without these signs. Honestly, that would have been ME, had I not lived through it... This needs to change, certainly! I got frustrated enough for these patients to offer just IIH evaluation and treatment if needed at POTS Care.
@@dr.dianadriscoll1546 I have SpinaBifida and Hydrocephalus. Could there be paralleles between Hydrocephalus and the pressures you have?
Hold up… my high pressure could cause what I have always thought was low pressure?! I still might have double leak sites but until I have confirmation on those two abnormalities I’m starting to wonder if it’s just been high pressure all along *pulls off scooby doo villain mask.”
“I went through 30 pillows.” I literally use stuffed animals, blankets, different pillows. I’ve found I love a Core water bottle behind my neck cause it caresses my neck. During migraines I use a frozen one to help. I just feel like I connected so much to her journey the way I have with yours, Jen. Thank you for thinking to do this. It was very enlightening. I can’t afford to see her, but I’m hoping she has some articles that I can maybe share with covered doctors to get help or something.
This is the same part that blew my mind too. I was like, are you sure?! 🤯 But pay attention to your symptoms... this makes more sense for me at least. I think high and low pressure symptoms overlap a lot but I'm in pain rn so I can't remember. Oh, this brain. It tries 😄
Her Driscoll Theory ebook is free & there are more free research/resources in the pinned comment! She has a lot publicly available. Really trying to make a difference 🥰