Living with Dysautonomia | Ash Canty

Ash Canty was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) a form of #Dysautonomia that brings with it a slew of "heart attack" like symptoms and autonomic nervous system failures such as dizziness, nausea, tachycardia, brain fog, temperature dis-regulation, near fainting, high heart rate, low blood pressure, high blood pressure, shortness of breath, chronic fatigue and much more. She is also in the process of testing for another diagnosis of another chronic illness called ED's (Ehlers Danlos Syndrome) which causes hyper-mobility of her joints by an overproduction of collagen in her body causing constant joint pain and gastrointestinal issues. Both of these illnesses are lifelong and have no cure.

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[liliaben]

This is heartbreaking. I'm sorry this happened to you. My 16 yo was recently diagnosed and I feel helpless. She also used to be really active. She feels like it's ruining her life and I don't know how to help.

[michelewilson]

Best explanation I have heard yet! Thank you for being so transparent 🌹

[Dulcimerist]

I have hypermobile type Ehlers Danlos syndrome and the associated POTS, gastroparesis, pain, fatigue, and other related issues. There are several good medications to treat POTS/dysautonomia - beta blockers like Atenolol or Propranolol, alpha-2 agonists like Clonidine or Guanfacine, Ivabradine, and Mestinon. My doctors put me on Mestinon since it can treat POTS/dysautonomia, gastroparesis, and fatigue with a single medication by stimulating the vagus nerve and parasympathetic nervous system. Hoping your doctors found the treatment options that work best for you!

[Matrix]

I've had a few traumatic experiences that triggered a "freeze" response in my autonomic nervous system (I'm pretty sure i have CPTSD but am undiagnosed), and shortly after started experiencing migraines, dizzyness, lightheadedness, IBS, and now I also experience CPPS, as well as other symptoms that all seemed to be related to the autonomic nervous system. My neurologist said I didn't even have migraines, let alone dysautonomia, even though I'm 90%+ sure at this point because all my symptoms point directly to the autonomic nervous system. In a world where it's so hard to get proper diagnoses from doctors, these videos have been very helpful in affirming my suspicions. I also feel, nauseous, stomach pains, head pains, lightheadedness, dizzyness, and pelvis pain the moment I wake up. It might sound like pseudoscience, but meditation and especially meditation focusing on my breath and energy flow throughout the body, has helped me a lot in reducing symptoms of cpps, and deep belly breaths seem to also have a calming effect on the nervous system. At least for me where I feel like my autonomic nervous system has become unbalanced after experiencing trauma, and needs "re-calibrating" or rewiring to function properly. I've also been able to reduce head pain this way but it took about an hour of deep meditation. Sending lots of love to anyone dealing with their health

[juliac.]

Omg! You are telling my own story to me... I'm about at my end, I am not being heard by my care team. I am waiting on a telehelth call right now I am going to push her today! My life has not been my own for almost two years, I am bed bound right now from a terrible break in my leg, from falling from blacking out.

[indigenousbeauty]

Everyday is different my story is similar to yours I was active in college now I'm battling symptoms today I'm extremely tired and chronic pain stomach issues.

[lizinawe]

Years of feeling crazy until I was diagnosed. All the pieces fit together!!!

[alyria]

Uugh I can’t get a proper diagnosis. My current doc thinks it’s in my head too, stress, anxiety etc. It’s so frustrating. I feel defeated most days.

[bernadettebecher]

Have watched "you -tubes" covering dysautonomia and Elliot Overton or EONutrition has done some good ones regarding this topic - well worth your time.

[chengfusaechao]

As for me..i was active &
NOW..i have chronic pain
I feel TIRED.FATIGUE &
just feeling very weak(no
energy or motivation to
take LONG WALKS..)
gi problems
Digestion issues
bed ridden, lack of energy
to be
Girl, i experience ALOT of
the same symptoms as

[ek]

Great explanation of POTS! Thanks for sharing this. I have it too, and it SUCKS. It's nice to feel less alone.

[Matrix]

Thanks for speaking out on this and making your story known. I'm sure you'll find lots of beauty and love throughout your life. Hope you find lots of peace and happiness

[lizinawe]

What is the supplement please?? Alpha lipoic- acid?

[mudslinger]

I have DysA and also mcas but it truly is explained best imo by the new book “Understanding Myalgic Encephalomyelitis”. Author Dr Byron Hyde posts pages of this $100 book on his fb page. Learning the cause may be the same family of enterovirus that cause polio is crucial. ME may underlie all this?

[kimberlydubon]

You are telling my life😭😭😭
I have no life anymore😥