My name is Hailee I am 22 and I document everyday life with Mitochondrial disease and several other chronic illnesses! Since the beginning of 2016 I have documented my journey here on youtube and I love sharing my story and having a supportive community. I would love if you would join!
Пікірлер
My doctor just prescribed me Zoloft. I hope it will help me with my anxiety.
great contant please please continue
I started taking CoQ10 and Carnitine on advise of my neurologist. It didn’t feel like it helped at first until I stopped it for a surgery and I got really sick. The hardest part is finding CoQ10 that I can take down my GJ tube. Have you found any liquid brands?
Thank you for the updates ❤. Calling it feeling potsy is so cute, I might use that... being I deal with POTS also 😊
Hey hun are you still taking Zoloft I started taking 25mg for a week on June 14 this year and went up to 50mg about a week ago I’d like to know how it’s going for you ❤
I’m always happy to see you are stable. I have talked to you one time here, you gave me an adorable long answer. Those of us who are sick know how difficult it is to be consistent. Don’t apologize so much, we know the struggle. :) It is amazing that you post at all! 🥰 God bless you.
Thank you as always for your helpful posts!😃 I also find that missing Coq10 dose makes fatigue worse, also for me vitamin D vitamin Bs and Folic acid super important since I always seem to be low. My heart is giving me some trouble with tachycardia arrhythmia lately, hopefully can get that settled down soon. May I ask do you also use CPAP? If so has it been helpful? So far I am not finding it helpful.
Aww you're so kind! No I don't use CPAP❤️
I’ve never heard someone explain this horrible mito episode so well -
And the DW pillow- Mitochondrial disease patients who are also doctor who fans…… Start club?
Haha stop that's the best! Who's your favorite doctor?
@@TheMitoWarrior Capaldi
I’m see that CO-Q-10, sister!
Hi, I am in love with a guy who has mitochondrial disease. I met him through a dating app. I want to know the chances of this disease being passed down cause he is rejecting my love due to his anxiety
Hi! It really depends on the kind of mitochondrial disease he has. If he doesn't know, it's best to consult with a genetic doctor about it. And if he's rejecting your love due to his anxiety all you can do is be there for him. ❤️
อืม
Thank you for sharing..you're a fighter and faced it all.This is so inspiring for me.
Aw thank you. That's very kind💕
I am from South Africa, my 10 year old daughter had a Hemiplegic Migraine attack on 26 February. Life has been different for everybody since it happened, she struggles with everything, reading, studying, playing sports, talking, remembering things. She used to be this active, very clever and outspoken child, now is she is someone else. She also has a lot of mood swings, and sometimes it feels as if she has 3-4 different personalities. Thank you for your videos, I just found them an will let her watch it, maybe it will motivate her.
How are you feeling now?
Always fun to see you. Thanks for the updates
Wow 10:32 hugs that's rough
Welcome back Hailee and happy birthday 🎈🎈🎈🎈
Hello how are you doing happy birthday I hope you have a fantastic day
Hi! Thank you! I'm doing good how are you?
@@TheMitoWarrior I am Ok
Hi
Hey!
Ayyyy happy birthday!
Aw thank you!
Can you please share your current treatment for hemiplegic migraines. Thx! My daughter suffers so badly.
I take L-Arginine which is a over the counter supplement. That's what helps me primarily.
You're very brave and its admirable to see you share this very personal experience with us. I'm loosing my transplanted kidney after being on dialysis for over 7 years. The amount of stress, anxiety and misery I've been through is too much. Now I'm facing the fact that I'll need another transplant. In my area the southeast, its the worst for finding a cadaver kidney. So basically, unless I get a living donor I'll be faced with going back on dialysis. I cannot handle doing that again so I'll be gone when this kidney finally fails. With all this going on, I've decided not to go on Zoloft. I'm opting for CBD oil and I'm hoping I've made the right choice.
I’ve been suffering since I was 16, they can’t tell me what’s wrong I’m 18 now these are hell
Getting sun on our skin in moderation fuels our mitochondria. Honey...please go out in the sun. Im 71 working my butt off as a gardner. When i forget to take 200 mg co q 10 I really can tell. Carnitine is in all meats. I get GREAT prices on Piping Rock and Sansons sales and buy one get one free which they both offer.
look at bright light as soon as you wake to sleep better. its NATURAL melatonin made by nature
It’s my 15ty day and I keep waking up at exact 2 am everyday. I’m worried
Reach out to your doctor/psychiatrist. There's a chance zoloft may not work for you but something else will and that's okay!
I've been diagnosed last week. I'm afraid to go out. Can you live a normal life?
Normal is all relative. But truthfully, you'll have to adjust things and make sure you are taking care of your body, and possibly try out medications to help symptoms. But besides that, you can still live a beautiful fulfilling life. I know firsthand how much a diagnosis like this flips your world upside down and makes you feel life will never be the same. And in a way it won't. But you are more resilient than you think. (trust me) Give yourself space and time to process all the emotions. But don't let all those emotions keep you home forever. It's really hard in the beginning but you will find your footing even if that seems impossible now. You can absolutely live a really great normalish (like I said, normal is all relative) life❤️
These drugs cause mitocondrial problems
Your doc warned you about PSSD?
I know this was 5 yr ago but in case you see this, thank you for being brave I was diagnosed with this about 9 months ago ago it’s a scary disease but not being able to find information about it is worse. I hope you are doing better by now I am just starting my journey , take care of yourself
Aw thank you for your comment❤️
Thank you for the video. I have been struggling with this for 4 years. Going to doctors and them dismissing me as imagining the symptoms. I just got an MRI done and it was normal and my doctor said its likely hemiplegic migraines. Gping to a neurologist hopefully soon.
You are in no position to recommend therapy. Why identify with “your” anxiety? These are classic symptoms of malnourishment. I had them too. Are you consuming any amount of processed food? Are you consuming any amount of salt? You shouldn’t be. Are you consuming lots of fresh fruit? You should be. If you are getting these absolute basics wrong, be honest with yourself and admit that you are choosing the easy path of depending on toxic, harmful drugs for the illusion of feeling better. Your body is trying to alert you that something is wrong. Listen, don’t suppress it!
Everybody should try therapy and everybody should recommend trying it.
Thank you,brave young Lady.
I totally understand about the people who give you 'advice' & really mean it. Like it will stop our Mito just like that. I had a 2 month stay it hospital up in Sydney, Oz & this lovely lady had seen me about the hospital, she was holding a big cup of green stuff so stopped me for a chat. I told her what was wrong with me & she said this green drink with help me & stop the disease. She said 'here, take this one, I haven't had any yet'. I said no thank you but she was insistent so I took it with thanks. I went & had a sip & it was celery juice!! It was so terrible & I like celery itself but not the drink. LOL. It's so hard not to laugh sometimes as there is nothing wrong with our brains! 🤣
Stoppp, celery juice sounds nasty! It truly is hard not to laugh sometimes😂
I have these 'attacks' & I've never heard of a Mito crash so thank you so much for wording things that I understand. I'm a Mother of an adult son who has CP so I have spent many years looking after him until I was told I had Mito in 2012. I was 39 years old & a nurse so everything went out the window. I haven't worked since then which has been my biggest unset as I loved caring for people. You are a lovely young woman & I think (sadly) that as you have had Mito for most of your life, you don't know any other way to live. That's what my son says about his CP. He says 'it's his normal'. I wish you all the best, from Australia, Helen 🦋
Aw thank you so much Helen❤️
HELP!!! how do I get help with these types of migraines
we are waiting your next video Friend ❤️
I'm starting to suspect i have hemiplegic migraines, and am going to bring it up to my doctor soon. I've had chronic migraines since at least 5th grade, and the hemiplegic symptoms for at least a few years now. (Not sure on the exact timeline bc bad memory and i think the symptoms are getting more intense over time) Most of my symptoms are as bad as they could be, ie, no blindness or paralysis, and speech issues aren't so bad. But the one symptom i can't deal with is the falling. I'll be fine one minute, and then my knee buckles and im suddenly sitting on the floor or clutching the nearest piece of furniture. It sometimes gets so bad i can barely walk. It would be more manageable if I didn't have so many migraines, but weather acts up? Migraine. Period? Week long migraine. Bright lights? Migraine Hopefully the doctor can help and i can get a job again without scaring the sort of customers who get concerned when their cashier is replaced by a bag of potatoes, but we'll see
Sorry for your loss take all the time you need
Thank you❤️
it's really terrifying, you doing your work as usual and Normally and you suddenly get, lil symptoms are starting, you start to be worry and can't do anything but watch it getting worse and you get a Hemiplegic Migraine attack, i do not stress and not be anxious anymore but still i am living with this fear, we don't know where i be what i am doing when it attacks we just can't explain ourself, and it's even hard if we try to tell this to someone who have no idea what we facing , while having trouble in talking words properly. this is very scary. i just wish i always have someone with me who knows about this problem whenever i am going through those attacks.
Sorry about your grandma you are in my prayers
Thank you❤️
My condolences so sorry for your loss😢
Thank you
Take care. Be there for yourself.
Sorry about your Granny. She sees you...God Bless
Thank you❤️
Take it easy sister...Praying for you now. 🙏
Thank you for that❤️❤️
Girl, I need more of the Hailee + Josh duo. 😂 You guys are hilarious. I have EDS (Ehlers-Danlos Syndrome) and multiple other chronic illnesses and I’ve been having a chronic pain flare recently and this video really cheered me up.
Haha I'll take that into account for future videos! He loves the attention haha
Hello there! I recently came across your KZread-recommended video discussing "Life with POTS," and I must say, I was thoroughly impressed by your presentation. Your focus on developing self-discipline, staying motivated, and being consistent deeply resonates with the topics I cover on my own channel. Like you, I'm dedicated to empowering and inspiring my audience with practical guidance. Your unique perspective and clear communication style have convinced me to hit that subscribe button. Keep up the great work-you're definitely making a positive difference!
I am experiencing ears ringing what to do?
I'd reccomend contacting your doctor. They'd know what to do and evaluate any issues with your ears
@@TheMitoWarrior antidepressants caused me permanent tinnitus. Central tinnitus, not ears tinnitus. It's hell.
@@FernaG.637 Yes me too. Because of fleuxotine, sometimes it decreases sometimes it increases. I don't know how it will cure
Would you mind sharing how your mito diagnosis was confirmed? Like did they find a mutation on a dna test, Did you have a muscle biopsy etc. Thanks for spreading awareness!
I was diagnosed with mito based on symptoms back in 2006 when I was 5. At the time my doctor wanted to wait on doing a muscle biopsy because treatment wouldn't change. ( he put me on the mito cocktail.) And when I was younger, I had more mild symptoms than I do now. In 2013 I had genetic testing done through a spit tube. The results of that genetic testing confirmed my mito diagnosis. And then in 2018 I redid genetic testing through a different company. That was either a spit tube or a swab, I can't clearly remember. But redoing testing gave a lot more information dna/genetics wise. And to clarify yes I have a disease causing variant that was found!
Heyy my gastro doctor left the office sadly I have to see new gastro doctor 👩⚕️ I have the same surgeon I gotta make sure to call them this coming week set up with a new gastro doctor I was with her since 2017 and it’s good to see you ❤ glad ur appointment went well
Oh no that's such a bummer. I hope you're able to find a good gastro doctor. Thanks for leaving a comment! Hope you are well❤️