All About My POTS/Dysautonomia | Postural Orthostatic Tachycardia Syndrome
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- čas přidán 27. 08. 2024
- I finally filmed my POTS video! I'm sorry it's taken so long for me to get this up and that it's all over the place. Please feel free to ask anything I left out!
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Welcome to my channel! My name is Hannah and I live with a couple of chronic illnesses. I also love traveling and beauty. Thank you for supporting my channel!
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It’s so difficult to get a doctor to take us seriously. I started going to the doctor almost 10 years ago. I had just started high school. Gave up after 3-4 years of the doctors nonsense.
She tried to push a caffeine free lifestyle on me and told me that would solve every problem. And wouldn’t listen when I told her how low my consumption was. She tried anxiety, treating my disordered sleep patterns, asthma, tested my heart and everyone was incredibly rude and let me know they thought they were wasting their time on me because I was too young to have the problems I said I was having...
So that leads us to me obbbbbbbviously making it up... because I was too young in their opinion to have serious issues. This was also the doctor that laughed at me when I told her I was bleeding (feminine problem) for 7months straight.
I’d love to try again but idk where to go and I’m nervous about just seeking out a specialist for what I think it might be! But you’ve given me some hope and encouragement :)
I H8 the way doctors (even women doctors) do not take women seriously. Keep trying until you get a doctor that does. They ARE out there. Plus I think doctors have notions, somehow, that women tend to pop pills and men tend to drink alcohol. Doctor's used to believe that men suffered more heart attacks than women, but statistics proved their notions wrong. Only recently did women begin to get the cardiac consideration and care that men have gotten for many years! Blessings of health to everyone searching for info and healing.
i had a doctor who tried to push caffeine free lifestyle long before i started drinking coffee...
coffee seems to be one of few things that helps against headaches though.
not really a fan of doctors
I can relate to a lot of this, as I had a lot of bad experiences with doctors until I was finally diagnosed with hypermobile type Ehlers Danlos syndrome as the underlying systemic disorder that was causing my POTS, digestive issues, pain, fatigue, migraines, and other health issues.
My advice would be to see a doctor who specializes in internal medicine, and that doctor can make appropriate referrals and put a decent team of doctors together. Also, never go to doctor appointments alone - bring a friend or family member with you to take notes, advocate for you, and provide additional information about your health that they've witnessed. If you experience a doctor who is ineffective at doing their job, you have every right to "fire" that doctor and "hire" a new doctor who will provide you with the healthcare you deserve. Advocate for yourself!
your hair is literally perfect
Thank you!
Simply Hannah what medicine do you take
So tru
I have pots as well and the first ten years undiagnosed. Finally ended up in Cleveland also after a referral from Univ of Michigan. Over the past six years my symptoms have gradually decreased and I'm feeling pretty alright now. I hope and pray the same happens for you and you're able to find relief :)
Hang in there!
Hi sir
Please tell me how you did treat that
Do you live in Michigan ?
Im 16 and also suffer from this my heart rate went from 87 to 123
Pots is something I’ve struggled with my whole life from birth and I’m only now being diagnosed at the age of 20. Thankyou for this video and spreading awareness
I've had POTS for 30+ years, and it was the first sign that I had hypermobile type Ehlers Danlos syndrome. Medications such as a beta blocker, Ivabradine, Mestinon, Guanfacine, or Clonidine can be really helpful at managing POTS. It can take time to find the medication or medications that work best for each patient, since each patient is unique. Compression calf sleeves and increased fluid intake can help a bit. Putting on more leg muscle and staying active with exercise or going for walks can help, and can prevent POTS from getting worse. Some POTS patients are helped by IV saline infusions every few weeks. Finding a good doctor who is knowledgeable and willing to work with you to manage your symptoms is important, and sometimes a patient needs to "fire" a nonperforming doctor in order to "hire" a new doctor who is able to provide the quality of medical care that everyone deserves. Always advocate for yourself, and never give up!
I have POTS too and for the longest time no one knew what that was and my brother had it really bad and he was bed ridden and went to the Mayo Clinic. I was diagnosed when I was 10. Thank you for making this video!
THANK YOU so much from a mother with a daughter who is now 11 and has had POTS since 2nd grade. Very helpful. Continue to take care of yourself and don't give up.
Thank you for this video, I was diagnosed in January. You're video explained more than the doctors did with me! I do have bad blackouts in which I get seriously injured. I was accused of making things up or looking for attention. It took a really special doctor to believe me and follow it through. I feel for you x
I'm so sorry for you diagnoses but happy you have answers!! Thank you so so much, your comment means a lot!
Lei has anyone talked to you about Kangen water?
Thank you for sharing 💖
I have endometriosis and it's constantly kicking my butt. You face your chronic illnesses like a champ!💪Keep fighting and stay strong 💕
Thank you so much, but I really don't. I have my days hahaha! Thank you so much, same to you!
me too its horrible im new to endo
Thank you for sharing your story. I have been living with ectopic beats, heart palpitations, constant exhaustion, heat intolerance, body temperature abnormality and brain fog for the past three years. All cardiologists have brushed these symptoms under the carpet. My GP completely ignored me and accused me of faking my symptoms to be in the spotlight. Of course, I’m too young to have anything wrong with me. I’m exhausted. Completely and utterly exhausted. I was given Propanolol to keep my heart rate normal but it doesn’t work long. I’m so sad and I feel helpless. Nobody wants to help me.
After the beta blocker didn't work, did they try one of the other POTS medications? Ivabradine, Mestinon, Guanfacine, or Clonidine are what they usually cycle through after a beta blocker doesn't work well enough. Sometimes it takes time to try various medications until the right one is found, since each patient is unique.
I'm 12 years old and I have P.O.T.S., dysautonomia, and mast cell activation. I've been in bed, in and out of hospitals for months. I can't recall the last time I went to school. My cousin went through all of the things I went through. Which I was lucky about because my mom and I knew what was going on. I'm starting the medication that helps my cousin a lot and it's helping. Basically, if I stand up and walk more than 3 feet I feel dizzy. I also have horrible stomach symptoms. I'm always nauseous, have horrible pain in my stomach, and vomit a ton. With the mast cell activation if there's a smell in the room I might vomit, become red and itchy all over, or feel extremely nauseous. If I ever went to bath and body works I would literally stop breathing. I have horrible headaches too. On a daily basis my heartrate goes from 30 to 180. It's horrible.
Sorry you're going through all of that. I have a lot of those issues, except for the mast cell issues. Have they screened you for Ehlers Danlos syndrome? That often causes those issues, and mast cell activation syndrome often comes with it. I have hypermobile type Ehlers Danlos syndrome.
Have they tried you on Mestinon to treat both the POTS and the digestive issues?
Thank you for sharing! I hate that the Doctor's and even my family don't always believe me, it's reassuring that other people out there are going through a similar journey.
I know how it feels when the doctor say it's all in your mind or others not believe our invisible illness. I also have dysautonomia and experience orthostatic intolerance. One of my heart doctors tried to send me to psychiatrist but later got diagnosed with a leaky heart valve. It helps to connect to other people with the same illness so you feel understood and connected.
I have just been diagnosed!! Apart from the diahreaa.
I’m so scared to stand anymore and nobody understands how depressing this is. I can’t sit in the sun anymore, I find it hard to bath. It’s ruining my young adult life 😢
Hannah,
I was diagnosed with POTS a month ago and things have gone downhill. I also have anxiety and depression and other mental disorders but that is all everyone sees. Because I have those, My POTS is not "real". I am wanting to seek help and better treatment for the POTS but do not have the support of my family because POTS is not REAL though I was diagnosed with it by my cardiologist. I started taking Metoprolol two weeks ago and did not notice a difference with it. My BP fluctuates between being too high and too low, but the high HR stays the same. I have had a full GI (upper and lower scope, stool test, gastric empty test) workup and a full Cardiology (24 hr holster, 24 hour urine, blood work, CT, ECHO) workup with bloodwork and everything came back normal. I have not been tested for other diseases but I am feeling like I am at a loss. The past 3 years of my life have been chasing answers and we have on, but no one believes POTS is a real thing and no one has done much to treat it. Seeing your video validated a lot for me and I am hoping that I can get people to look past the mental illness factor and realize something is truly medically wrong with my body. It stuck with me when you said that the mental health deteriorated for you due to the physical symptoms, and it is so true. Thank you for sharing your story. I am searching for help and answers still and am desperate for anything to help and desperate for someone to believe me.
I have pre syncope, lightheadedness, chest pain, palpitations, unstable BP, high HR, poor circulation, dizziness, nausea, diarrhea, fatigue, body aches, shakes, headaches, insomnia, heat intolerance, exercise intolerance... I am bedridden. I have been diagnosed with no other chronic illnesses or underlying illnesses that we know of
I might have to check out the Cleveland Clinic, I live about 3 hours away from there but I know I need better care. Thank you. Is there any advice or tips you can offer?
ALSO they are suspecting Endo for me as well and I am going to have surgery pretty soon. How was the surgery and recovery for you having POTS?
How are you doing now?
@@athenadarby9898 I just went on my second trip of the year. Things aren’t close to perfect but I’m not completely bedridden.
I am exercising by walking and I am starting to get back into life.
My symptoms are still very much there (especially nausea!!) but I’m learning how to live with them and when I need to take a break.
@@taylorkitchenpersonal After the beta blocker didn't work that well, what did they switch you to? Other good medications for POTS include Ivabradine, Mestinon, Guanfacine, or Clonidine. Sometimes it takes time to find what works best for each patient, since each patient is unique. Sometimes saline IV infusions every few weeks can also be helpful for POTS patients.
@@Dulcimerist I am on Corlanor now and it’s working well. As summer comes in the only thing the corlanor/ivbradine does is stop my hr from reaching past 130. Doesn’t stop the symptoms
@@taylorkitchenpersonal Glad the Ivabradine is helping. Summers are a bit rough on me - the heat causes our blood vessels to dilate too much. Staying out of the heat and preventing dehydration keeps things from getting really bad, but that's about it.
For POTS I'm on Mestinon during the day (since it also treats digestive dysmotility, exercise intolerance, and fatigue), and a small dose of Clonidine before bed. Small doses of Clonidine reduce blood pooling, which increases circulating blood volume and stabilizes blood pressure. The Clonidine also prevents migraines and treats both insomnia and anxiety.
Has your doctor tried giving you a liter or two of IV saline once or twice per month during the summer?
Also, have they screened you for the various types of Ehlers Danlos syndrome? It turned out that EDS is what causes my POTS, digestive issues, pain, fatigue, and other health issues.
I know I’m commenting on a fairly old video but I’m glad you finally got a diagnosis! Unfortunately it seems when it comes to younger females, “it’s just anxiety” is the standard go to. I was finally diagnosed with narcolepsy in my late 20s after struggling with it since my late teens... was constantly told I was just tired because I was depressed. About two years ago I had chronic ear pain for almost a year and it got to the point that doctors just thought I was trying to get pain killers, before they finally figured out my jaw is dislocated on both sides and that is impacting the nerves which go to my ears.
Dislocated jaw is painful! Do you have TMJ issues as well? I'm assuming you have one of the types of Ehlers Danlos syndrome as an underlying condition which causes your health issues?
You did great!! I feel like I understand POTS so much more now. Such a beautiful and inspiring young lady.
Thank you so much!
Dang! i forgot to say, thank you so much for sharing! I don't feel alone anymore. After watching endless YT videos on pots, I finally found someone I can relate to. Thank You! Thank You! Thank You! You have no idea how much our stories collide. I will sleep peacefully knowing i am not alone! Our life experiences are just too similar. I have hope that this evil will be cured one day! Thanks again for sharing!
We just posted a video concerning the closing of the POTS program at the Children's Hospital of Philadelphia which treats many of our warriors! We would love your support in the hopes our message can save the treatment center:)
Fight Like A Warrior I am leaving tomorrow to go there tmrw they don’t know what’s wrong with me at St. Louis Children’s Hospital but from these symptoms thinking this could be a contender 😂 that sounds like I get to choose but no one chooses this
Praying for you and other people who are suffering. I have not been diagnosed but have similar symptoms. Heat intolerance is the worst one for me. 😞
Thank you for answering my question! Very interesting and informative. I feel like I know much more about POTS now than I did previously. You always look so beautiful and your choice of color is spot on! Maybe a video about how you choose your makeup colors ;) ? Hope you are having an amazing day!
Thank you so much! You as well!! 💜
Simply Hannah 🤗❤
I'm so sorry to hear that you have diarrhea so often. That was how my POTS started too - I kept going to the bathroom 10-15 times a day after some kind of infection. That lasted for about 6 months... I still have significant GI issues but I don't run to the bathroom every time I try to eat anymore. My other POTS symptoms have stuck around and gotten worse, though. I don't know if you've tried a low fiber, high carb (specifically white carbs like rice and pasta) diet, but that's what helped me the most. Another thing I do is eat a piece of plain white bread first thing in the morning. I found that I had way more diarrhea in the morning, and once my stomach got irritated, it would stay that way for the rest of the day. But putting a piece of white bread (or some other food that's gentle on your stomach - white bread might not work for you like it does for me) in my stomach first really calmed my GI tract and prepared it for more "complex" foods. I follow that up with a cup of tea (ginger, peppermint, or just plain hot water are all good choices) and whatever else I'm having for breakfast and I don't get that kind of "reactive" diarrhea that happens right after I eat anymore. If you're going to the bathroom soon after you eat, you might have to play around with your diet like I did to reduce that symptom. You might also want to look into dicyclomine and hyoscyamine. They're both stomach pain relieving medications that will also stop you up some. I relied heavily on dicyclomine during the first few years of my illness. Sorry for leaving you this huge paragraph of unsolicited advice... I hope that you find some relief from the diarrhea though. I know how terrible it is to be running to the toilet 10-15 times a day... your life really starts to revolve around it and you can't go anywhere when you have that level of incontinence.
💞💯 I have been diagnosed with pots too! Before I was diagnosed I wasn’t feeling well... so because I was having a lot of headaches my doctor put me on meds one called Gabapentin, I still take them every day... lately I’ve not been feeling well again🤕( since I had covid) so I was put on bystolic, for my heart ❤️ yesterday I was increased, so hopefully I’ll see if I can get better soon! Thanks for your video!
I've had the exact same symptoms you describe for 2 years now, minus the fainting. Sorry to hear you've been dealing with it for so long. :( Most of my symptoms started after having a TDAP vaccine (which I requested and now regret).
starchaser28 I started fainting after a vaccine as well
The same thing happened to me in May 2019. I went they hell. I was diagnosed with hEDS in late 2020. This has been a crazy and PAINFUL experience. You should file a complaint.
@@athenadarby9898 Just an update on my situation, after spending a ton of time and $ on traditional medical nonsense, I ended up switching to a strict carnivore (all grass-fed red meat & dairy) for a few years and have recovered almost 100%. I'm convinced now that it's the healthiest food on the planet for us and best way to heal from everything.
@@starchaser28 I am so sorry it took so long to get back to you. I have really bad brain fog and then couldn’t find your reply. 🤔 I have chronic kidney disease as well, and I have had a kidney transplant. so I am not supposed to eat too much meat. And I am good with that as never a big meat eater. I do love a good steak . I am so glad that you found something that helps you. I know eating a clean diet has definitely helped me as far as my stomach problems go.and my mouth issues. I am still struggling wit many of the same problems but the volume has been turned down. I wish all the best. 😊
Same here. I spent over a year and a half not being able to eat anything but soup before being diagnosed with gastroparesis. I was also having daily migraines and was referred to a neurologist who diagnosed me with POTS. The way he described it was your upper body doesn’t get as good of blood flow as your lower body, so anything up top is affected by that. I went to a gastroparesis specialist who discovered my gastroparesis was caused by super slow moving intestines combined with POTS causing poor blood flow to my stomach and he got me on medicine where I can eat again. I am on beta blockers as well. 20,000 in debt from tests and having trouble working. The fatigue can be unreal too. I wish more doctors were aware of how serious this is. Just wanted you to know you aren’t alone!
I was dx with POTS yesterday. Thank you for this very informative information. I hope you are getting better.
Hello Hannah. I'm currently working with Cleveland also. Dr. Shannon under Dr. Wilson. I just had the sweat test done and I'm going for the longer tilt test to confirm pots. I'm in my 40s and had been in really good health and shape until 3 years ago. It is truly awful what some Dr's. will say when they can't see beyond normal test values.... The very priceless value of the patient sitting in front of them looking for understanding. I truly felt your pain when you listed their false diagnosis. Prayers and hope for your journey.
I was officially diagnosed with POTS June 2017. All of my symptoms started in October 2016. It took them about a year to finally diagnose me with something. It was really frustrating being told, "you just have anxiety, I'll prescribe Xanax". It's pretty cool (and unfortunate) seeing many other people go through this because, for the longest time, I felt extremely alone. I took 1 1/2 years off from university during all of this and took classes online too. I'm finally back on campus, but lately, my symptoms have been terrible. POTS is definitely a struggle.
My neurologist prescribed me Amitriptyline 2 years ago for "nerve pain and migraines", but I know other people take it for vertigo. I really believe it has helped me live a more normal life. It is technically an anti-depressant, but it's been around so long that they use it for MANY different things. It's definitely something worth bringing up to your doctor.
Hi Hannah, Thank you for your video. You've had quite a journey - sorry it was so difficult. Same for my daughter who got POTS when she was 12 too. Lots of people with lyme complex have POTS and many of your symptoms cross over from POTS to lyme complex, so it makes me wonder. Just like you needed to find the right doctor to diagnose your POTS, you need the right one to diagnose and help you with lyme complex. These doctors are called "Lyme Literate" doctors and you need to look for them specifically. I wish you all the best.
💜 Hey, Hannah you look so beautiful and your makeup is on point. Sorry, life not fair for you but, its good you are hopeful and strong spirited person to push on despite your health challenges. Thanks so much for educating people about your health issues and how you deal with your daily medical needs. Hannah you are such an inspiration to so many people who also my be going thru health issues whether its the same as yours or other health issues. You are so smart and thoughtful young lady. That smile of yours is so warm and pretty...don't stop smiling Hannah it makes others around you happy. Take care girl and thanks for another video.👍👍☺☺💜💛💜💛☺☺
I was diagnosed with epilepsy for 8 years till they realized I had pots, it's tough sometimes, stay strong
Thank you, same to you!
My main pots symptom is chest pain, ALLLL the time. It’s super irritating but I’ve had over 20 ecgs, 2 a&e visits, A 24 hour heart monitor, a blood test, everything came back TOTALLY normal. The only thing that was abnormal was my heart rate but I have pots and take atenolol for it. I have chronic anxiety and I get convinced I have like heart failure and all these other issues, but I don’t hear the chest pain symptom to often 🤔
Time to diagnosis is insane. The only reason I even got a diagnosis was because I did my own research and it took over 10-30 years. If I relied on the doctors it probably would have gone 90 years and never gotten a diagnosis. The medical system is totally incompetent. I did the tild table test and tested normal though. But, have low blood volume/pressure. Also, I have had syncope. I was prescribed Mestinon and Florinef, but have not taken them yet.
Thank you so much for sharing your journey with us all. I am better educated on POTS and continued prayers for your healing journey 💜
i know this comment is really late, but i have lots of symptoms like you, the diarrhea, dizziness, lightheadedness, and being tired. i also have lots of problems with my joints
Have you been to a rheumatologist to get screened for autoimmune and connective tissue disorders, such as lupus and Ehlers Danlos syndrome?
@@Dulcimerist no but my mom won’t let me be tested for anything because it’s too expensive for her child to but it’s perfectly fine for her to.
@@avasingsmusic3226 Genetic tests can be super expensive. Blood tests for autoimmune disorders can also be a bit pricey. However, testing for the most common type of Ehlers Danlos syndrome is a simple checklist that doesn't cost anything. You can find a CZcams video for "hypermobile type Ehlers Danlos syndrome diagnostic criteria" to see what a doctor does to diagnose it. Watching the video, if you meet enough of the criteria, you can have your doctor run you through it and diagnose you.
@@Dulcimerist i’ve done that before and i’ve met criteria for it, however my doctor thinks everything wrong with me has to do with my weight but next time i go see her i’ll tell her what i think since my family won’t be in the room.
@@avasingsmusic3226 If you meet enough of the criteria for hypermobile type Ehlers Danlos syndrome, getting the diagnosis would be helpful. Weight will amplify the effects and symptoms of Ehlers Danlos syndrome, so your doctor's belief that your weight is a causal factor for your health issues only lends more credence to the possibility that you have Ehlers Danlos syndrome.
Oddly enough, I've had many of the symptoms you have, including gastroparesis, POTS, venous insufficiency, endometriosis, diarrhea, pancreas problems where I cannot absorb fats (including fat-soluable vitamins A, D, and E, and have to take pancreatic enzymes), anxiety, depression, autoimmune disease (APLAS), and so on. As a side note, most antidepressants CAUSE anxiety and panic attacks to start, or if you already have them, to get worse. I haven't found a single antidepressant that didn't do this to me.
You look so beautiful in this!
I’m diagnosed with dysautonomia moreso than POTS because I get dizzy so much. I started getting dizzy and feeling woozy, and after so much testing (they really should make it easier to diagnose, I had a year of just testing after a good five months or so of being undiagnosed and hoping that we found something) they figured out what it was. I’ve literally only been diagnosed and on treatment for about two or three months lol
Treatment has sort of just been hoping that it gets better with age, although Im not good at following all of the lifestyle changes. It’s been really hard mostly with every single day being a roll of dice, so I’m glad to know that there are others who have a similar experience.
Hoping everyone stays well!
you are so incredible for sharing, this isn't easy, for me my health issues have been 7 years so i relate to you so much! thank you for sharing your pain. It doesn't cure it but i suggest medical marijuana, it's really the ONLY thing that helps me, also helped my sister with her battle with MS. I hope you ALL get well
Do you think I have (pots) I get headaches. I get dizzy. I have problems understanding things. I get tired. I get blackouts.
My son is 27 and just was diagnosed. He has been fainting since he was 6 years old. Thank you May-O clinic for getting it right! 20 different doctors since he was 6. My question, what are the chances he gets approved fir SSI since he faints several times a day. And can't work when he does they fire him for this fainting issue
Love Love Love this!! I was recently Diagnosed with Dysautonomia
Wow. Thank you. I have gone to a rheumatologist who said I just had hypermobility in all of my joints and told me to go to physical therapy because my blood tests all came back fine. I asked about EDS but he said that because my blood tests came back fine, that I didn’t have it. He referred me to a cardiologist anyway for my fainting (I actually faint, too) and they did all the testing and it all came back normal. Meanwhile I’m getting a colonoscopy and the other one that makes your throat hurt because they put a tube down it because I have diarrhea. Tests were normal. Finally I go in for my follow up and he says “we could do the tilt table test but I already know her you have.” Then he explained “autonomic dysfunction” and for once I didn’t feel so crazy.
I also have joint pain and endometriosis.
Honestly I felt like you were up there explaining my life.
I’m so sorry it took so many doctors and so much money and effort just to be diagnosed.
But what sucks is that being diagnosed doesn’t really mean anything because all you can do is manage it.
For me, there’s an extra component of humiliation if I faint in public.
Try Ivabradine, this lowers hear rate yet increases blood pressure slightly. Should help you alot.
Thanks so much for making this! My daughter has many of the same symptoms that you describe. He doctors have been at a loss as to what is happening with her. It doesn't help that we have a new PCP who doesn't really know her as yet. But perhaps we can suggest POTS and go from there. BTW - You look lovely
all your symptoms you just named I have every single one. I'm going to a new cardio this week for another opinion.
After 10 years I was diagnosed with Fibromyalgia and EDS but still pushing for a POTs diagnosis. I can't stand up for longer than 30 seconds without my heart skipping and knees buckling. It's so frustrating
POTS was the first sign that I had Ehlers Danlos syndrome. Are they using Ivabradine or Mestinon to treat your POTS?
@@Dulcimerist I haven't been diagnosed yet but I'm on the way. I'm on baclophen to help me manage nerve pain and they're looking at a procalamine drip to see if that will help too
@@rakayabarre9528 Glad the Baclofen is helping. Careful with that, as muscle relaxers like that can make people with EDS more prone to injury - relaxed muscles increase joint instability, plus it can exaggerate the proprioception issues that EDS people often have.
I'm on a small nightly dose of Clonidine, which can treat both nerve pain and POTS, plus migraines, insomnia, RLS, and anxiety.
GIRL EVERYTHING YOU SAID HAS HAPPENED TO ME!!! IVE NEVER FOUND ANYONE WHOS HAD THE EXACT SAME SYMPTOMS!!!
You definitely are not alone!!
This was an amazing video! Very informative. U r so gorgeous. I hope u find more answers. I have a bunch of chronic pain and chronic illnesses so I feel u!
Thank you so much!! It really means a lot! I'm sorry you have to go through this, but you're not alone!
Hi hun do you have shaking and anxiety as well? I have anxiety but I think it’s pots as well I have bloating and all.
My mom just sent me this video because I am currently going through the “what the hell is wrong with me?” phase and everything you’ve said sounds exactly like what I’ve gone through. I was diagnosed with mono 4 times as well and it all started after my first diagnosis with that. No doctor has diagnosed me further or been able to figure out what’s wrong with me though. I was just hospitalized two weeks ago for a few days for a stroke but I have been fainting often (today was the last time). All of my testing has come back normal except a couple of small things that are alright now. This video has really opened a door for me! I’m now going to do more research and seek further medical help for this!
I have dystonia its an abnormal muscle movement disorder. It effects my arms, right leg, hands, neck and vocal cords. I’ve had so many test before I was diagnosed. I was also told it was anxiety or it was in my head cause I would get upset cause there’s not a lot they can do so I can relate a little bit. What is a tilt test? I also got sick a lot in Elementary school
It's ridiculous that's they haven't diagnosed you with EDS, it goes along with,POTS and your GI issues x
took three years to get my ME diagnosis and 2 years to get them to listen to me that my knees had something other than ME wrong with them its so fristrating xx
Jon West hypermobilty syndrome is now part of the diagnostic criteria and EDS can affect the GI tract more than affects the mobility of joints and some people have did joints due to the eds which may have caused injuries in the past.
@@jonwest403 there's also vascular EDS and I don't think you need to be hypermobile for that one?
Romy The vascular type is also hypermobile actually!
@@romysv That's somewhat true. People with vascular type EDS (vEDS) tend to have their hypermobility limited to just their smaller joints, such as fingers and toes. This isn't always the case, but the fact that many people with vEDS lack the same hypermobility that the other EDS types have unfortunately can cause this more dangerous type of EDS to go undiagnosed until a dangerous vascular event occurs.
the fact you were diagnosed with munchausens and accused of laxative abuse is horrendous. plus something as scary as CF without even all the symptoms. that is all insane. i'm so glad you found the right diagnosis in the end, but it's a shame it took so long! (as it seems to with most of us i guess)
Not watched the video yet I’m still on the intro, I am really looking forward to learning more about you and will prob comment again but, I just had to comment saying how god damn gorgeous! I don’t know if your down for doing tutorials but fancy helping a girl out and showing how you look so flawless and how an earth you get your hair like that. My hair was down to my bum an I got it cut your length to have my hair like you have it but girl it’s such w struggle!
Thank you so much! I did a makeup tutorial a few videos back but I definitely plan on doing more. I plan on doing a hair tutorial too!
What salt tablets did you take? Pls reply.
I hope you have finally got that cdiff under control. Sounds pretty terrible to have to deal with that on top everything else you are dealing with. I think i may have Dysautonomia/pots as well but it wasn’t as bad previously so my cardiologist hasn’t diagnosed me with it yet. Wish I could get my tachycardia under control. It’s super annoying. And the headaches are awful as well.
I just found out I have this too as well as sarcadosis been the worst year of my life :( I can hardly keep food down and get so light headed and dizzy even when lying down my heart will race and beat out my chest and it literally feels like I’m dying I have to lay down with sunglasses on and my eyes closed in the dark with my feet up. It’s horrible hard to even go to the bathroom alone or shower it’s miserable.
I have this disease. It sucks ass but it’s cool to find others that have it too
I just got diagnosed with POTS a few months ago
Your such a beautiful and strong person 💕
If you do a tilt table and you faint immediately you then have pots. Pots does cause insomnia and it happens mainly to younger women. I did the test for pots and scored across the board but unfortunately for my symptoms there is no answer. And still
I’m trying to figure out if I have pots, if I get up super fast my vision gets blackish, I’m dizzy, light headed and sometimes my leg gets numb, i have passed out once. But I do have a lot of anxiety or get super dizzy if I’m doing a lot in one day, i also have a lot of migraines and headaches, but the standing symptoms gets better then worse:/
To be on the safe side, you should tell your doctor about this! Take care!
Have you ever been checked for Lyme , not those IGG IGM , but real western blot , C 6 ets .....there are a lot of tick born diseases that cause sensory autonomic Polyneuropathy. I have tick encephalitis- and I am paralyzed for 5 month. But that’s not the poin . I had the same symptoms with my stomach. neurologist said small nerve neuropathy scrues your stomach. My disease went a different direction - but I basically stopped eating just not to experience stomach problems( do not recommend this technique for anyone)
Thank You So Much for this Update and Explanations. I'm not sure if you have ever said or answered...but....how did you Contract C Diff ? BTW....Great Video 😉
I had pneumonia and was on antibiotics for it and contracted it that way. I've never been able to get rid of it since (that was almost 4 years ago). Thank you!
Hi Hannah, I have been struggling with my autonomic nervous system too. Just found out that my legs don’t sweat. No diagnosis yet. I have also been repeatedly told that all my problems are from my depression and anxiety. I almost cried hearing that you were accused of laxative abuse. I’m going to start supporting your channel and maybe you could take a look at mine. It’s been really hard for me, I’m hoping to hear from anyone dealing with similar things. -Sandrine
I just got diagnosed yesterday.
I'm so sorry you have to go through this but know you're not alone!
Thanks for explaining your pots hunny hope your surgery goes ok xoxo
Thank you so much!
I'm praying for you girlie.
Hi Hannah. Thank you for this vid. -sorry long comment- I recently got referred to a cardiologist because my Dr. thinks I have POTS. I kind of had POTS symptoms the year I was actually diagnosed with Fibromyalgia and raynauds, (was fainting in the shower/bath, & when I stood up) Since then (5 years) My heart rate has been getting higher and more noticeable, I don't actually faint but every time I stand, My vision goes. I've always kinda treated it without the diagnosis, with salt and lots of water. I don't actually know if I have it or not, because other than fibromyalgia and IBS, I don't think much of my symptoms represent my automatic nervous system not working. (Although fibro means my nerves are.. damaged.) I'm going to have the tilt test in a couple of weeks to determine it, but I'm still unsure if what I have is actually POTS. .. I don't faint actually much, I'm not low/dizzy every single day, and my blood pressure isn't bad sometimes. I've already had a halter monitor done for 24 hours and it showed nothing at all. I'm just thinking that it's going to end up fine. idk? Thanks. Also unrelated - you always have such on-point hair and makeup!!
Don't apologize!! I had symptoms for years without a diagnosis! I don't pass out every time either! Honestly, it sounds like you do have it and fibro and IBS are related to POTS (according to my doctor anyways!). I hope you get some answers and a good doctor soon! Good luck with your tilt table test, prayers headed you way! Also, I have had 3 halter monitors and they all came back normal except I get tachycardic when standing from sitting, exercise, standing for long, etc. Thank you so so much!!
Thank you, that really clears things up for me. It probably explains a lot of my symptoms that I just said were fibro or raynauds, so hopefully all the tests go okay, thank you!!
Great Video, now I have a better understanding as to what pots is, it makes me question if I have it. So I well need to ask my GI doctor a few questions, I already know that I can not pass the tilt table test, however I was told that was for something else but I've been diagnosed with.. who knows???
i just got diagnosed with pots almost a week ago. i have to figure out how to live with it.
I've had POTS for 30+ years. The key is symptom management. Compression calf sleeves and increased fluid intake can help. Putting on more leg muscle and staying active with exercise or going for walks can help, and can prevent POTS from getting worse. Some POTS patients are helped by IV saline infusions every few weeks. Medications such as a beta blocker, Ivabradine, Mestinon, Guanfacine, or Clonidine can he really helpful at managing POTS. Definitely find a good doctor who is knowledgeable and willing to work with you to manage your symptoms.
@@Dulcimerist beta blockers didn’t work for me /: i did find a great doctor who is helping manage because i also have polyneuropathy at age 19 👍🏼
@@nataliet1618 Beta blockers didn't work for me, either, and their side effects bothered me.
The medications that eliminated my POTS are Mestinon during the day (it also treats my digestive dysmotility), and a small dose of Clonidine before bed. (Clonidine can also reduce pain caused by neuropathy.)
Since everyone is a unique individual, it might take time to find which medication works best for you. Glad you found a good doctor who will work with you to find the right treatment option for you!
My POTS is related to hypermobile type Ehlers Danlos syndrome. Do you happen to have hyperflexible joints, or joints that pop out of place? Polyneuropathy at age 19 makes me wonder about an underlying connective tissue disorder like that.
I have POTS, Mast Cell and had Cdiff numerous times and ended up having a fecal transplant.
Ive seen a lot of people with POTS sweat bad. I havent gotten a diagnosis yet but have crossed a lot of things off the list. I sweat bad tho mainly from armpits. It will literally drip. Im seeing Cleveland clinic also. Hopefully will have tilt table next
I wish you luck the tilt table is the worst
@@Ken-tm6mf was diagnosed. Didnt do to bad tho with it. Dizzy and foggy vision but im so ysed to severe symptoms that was nothing compared to my flare ups
Think about closing the pfo because u could be shunting blood from right to left or left to right if that happens u can have heart failure due to over load of the heart
At this time, my doctors think it's best to just leave it alone and keep watching it.
I have c diff too and it won’t go away for anything. I have other stomach problems too but this is really making me depressed
I mean I’m also newly diagnosed and I had EVERY symptom apart from diahreaa
0:20 I have heard of both names, but I didn't know they referred to the same thing.
5:46 That's related to hypochondria, isn't it? I know I've had hypochondria.
Hi, my name is Natalie Tippetts and I also got diagnosed with POTS 2 weeks ago. I was wondering if you could tell me, in your opinion the worst part about having it and how you would get people to understand what you're going through. I am doing a project on POTS so it would be very helpful. Thank you.
I have pots and it’s annoying :( you can’t do the things u used to do anymore... and people bullying me cause they said I don’t look sick...
So sorry you're going through this, but you definitely are not alone 💗
Which compression socks do you use Hannah?
Jobst or sockwell are my favorites!
So do I have this? Hydrated or not I occasionally stand up become extremely dizzy and almost delirious and a couple times I've actually fallen all the way to the ground and basically have a mini seizure?! Please help Im very confused Im an 18 year old cut athletic guy and when I stand up I get dizzy/seizures/muscle spasms its very embarrasing😓.
It's totally a possibility and honestly it sounds like you might, but I'm by no means a doctor. I highly recommend getting into a cardiologist or neurologist who is familiar with POTS and ask for a tilt table test. Best of luck!!
Did you end up getting to a doctor?
Great video!
Hi Hannah!!!! Sorry you're going thru this. Curious. Have you heard of Kangen water? Reason I ask is your video showed up in a search "Postural Orthostatic Tachycardia Syndrome and Kangen water" I know someone who suffers from this and wanted to find them info on Kangen water. Hope you respond and have a great day!
@I am glad you did not have cystic fibrosis!
All your symptoms point to Lyme disease please research it , I go to Cleveland clinic too dr Amalfitono. But he’s not my Lyme doctor.
i have some questions about pots if you would be willing to answer? i haven’t been tested or diagnosed yet but my sister has pots and i’m showing similar symptoms that have been showing very recently. it’s honestly very scary and depressing for me and would like to know more :)
Of course!
I failed a tilt table test and failed too. I passed out. They claim I have innapropraite sinus tachycardia
Alena J The same exact thing happened to me last week! I didn't understand IST and how you could have it and not pots. How are you doing?
Did you get your ivig ? How are you doing now ?
I did but I had a complication with it so haven't been able to continue. Not good, recovering from a stroke (I go over it more in my more recent videos). Thanks so much for asking 💗
I cant find u on Instagram do u have your handle again I'd love to ask u more as my daughter is 14 and really suffering and pots seems very likely but every thing is being blamed on anxiety at the moment I need some advice
I hope you feel better. God bless you 🙏🏻. I was watching some CZcams videos and I found Dr. Lonnie Herman in Florida.
Are u familiar with dnrs gupta or ans rewiring?
Does having Pots means that person will pass out by seeing any bloods or disgusting scens like a corps after an accodent? Cuz i passed out (my pleasure decreased first) for a short time after seeing that bloody person
No
Eres adorable..... translation: you are lovely
You look great. Been through a lot. My concern is you dont seem close to the Lord..you must be bornagain to see kingdom of God. You probly wont live to long. Make sure your right with GOD. Its a fearful thing to fall into hands of the living God. God put that in His WORD.. Do you know JESUS CHRIST AS YOUR LORD AND SAVIOR.
Have u ever seen Amy’s life or Christiana Doherty?
Yes, I love both of their channels!!!
Your so gorgeous ❤️
I think I’d sue over misdiagnoses‼️
I have one question what do u want to be when u grow up?
A news reporter!!
You Will Be GREAT!!!!!!!
Simply Hannah omg really you are going to be the best news reporter ever
She will be FABULOUS!!!! Beautiful, Smart, Well Spoken, Amazing Personality....and Empathy!!!!!!
Thank you girly! Miss you! 😘
Have you ever been tested for Lyme Disease? U have classic symptoms pots usually goes along with lyme.
Yes I have and I don't have it
Simply Hannah if u have positive bands u have lyme dont always need a positive for a cdc positive ur bowels and stomach issues sounf like toxin overload to me and parasites really hope u get better. Im going to get tested for pots i do have lyme
Did you get the HPV vaccine POTS is a vaccine injury that has been associated with vaccine injury, notably the HPV vaccine.
Janell Bennett I got POTS after shot #3 of Gardasil
@@alethiaeden Thank you for your honest reply. Best wishes to you and prayers for your health.