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Had my 4th episode in the past year this week. Worst one ever.. full blown stroke symptoms. Couldn't speak, left side completely dead and aura all at the same time. Lasted what seemed to be 6 hours and set in the ER for 12 hours. Hoping for a cure. I changed my diet and am strict with it. I don't even drink caffeine anymore. Hopefully it will go away. Praying the same for you kiddo.

How come doses are always increased, can you not just stay on a low dose if it's working

Looks like a lot of fun ❤

I hope you have a great vacation

Glad to see you can travel to enjoy the great outdoors.

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.

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?

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

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Thank you for sharing..you're a fighter and faced it all.This is so inspiring for me.

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

Ayyyy happy birthday!

Can you please share your current treatment for hemiplegic migraines. Thx! My daughter suffers so badly.

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.

It’s my 15ty day and I keep waking up at exact 2 am everyday. I’m worried

I've been diagnosed last week. I'm afraid to go out. Can you live a normal 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

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!

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! 🤣

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 🦋

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

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

My condolences so sorry for your loss😢

Take care. Be there for yourself.

Sorry about your Granny. She sees you...God Bless

Take it easy sister...Praying for you now. 🙏