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.
Read more about how to prepare for your health visit to overcome bias and dismissal from providers and get the free tool to help you keep a record of your symptoms and plan for your health visits:
patientorator.com/video-blog/...
Continue learning about Ash Canty:
patientorator.com/video-blog/...
#PatientOrator #PtExp #Healthcare #healthtalk #patientprovidercommunication

[@liliaben8327]

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.

[@Dulcimerist]

Sorry she has POTS/dysautonomia. Does she also have Ehlers Danlos syndrome or other health issues? Hoping you can find a specialist who can treat her dysautonomia. Has she been evaluated with a tilt table test? Once she's officially diagnosed with POTS, there are several different types of medications available to treat it (Atenolol, Prorpanolol, Guanfacine, Clonidine, Ivabradine, Mestinon); and there are non-pharmaceutical options like compression calf sleeves, SaltStick, exercise to put on more leg muscle, increasing fluid intake, and IV saline infusions.

[@princessmari5063]

Try full compression stockings (the ones that go to the waist), Normalyte electrolytes (made specifically for POTS patients, 3 -4L of water a day, and get her in to see a neurologist for medication.

[@michelewilson8119]

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!

[@LilBeachBumAsh]

This is me to a T. I just got put on disability, and I’m trying to learn to manage these day to day symptoms. Sending you hugs

[@juliac.7378]

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.

[@Dulcimerist]

Hoping you can find better doctors who will listen and provide the medical care they're being paid to provide. As a patient, you have the power to "fire" nonperforming doctors and "hire" better doctors who will provide proper medical care. There are several medications available to treat POTS; such as Atenolol, Propranolol, Ivabradine, Guanfacine, Clonidine, and Mestinon. It might take time and a good doctor in order to try out a few of those, in order to find which option works best for you.

[@Matrix2458]

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

[@Dulcimerist]

Some neurologist aren't well-versed on dysautonomia, and defer to cardiologists to diagnose and treat issues. Have you seen a cardiologist? There are several medications available to treat POTS/dysautonomia; such as Atenolol, Propranolol, Ivabradine, Clonidine, Guanfacine, or Mestinon. Hoping you can find a better doctor who can provide you with the treatment plan that works best for you!

[@indigenousbeauty83]

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.

[@bernadettebecher4689]

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

[@alyria76]

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.

[@ccsutherland4621]

It is so frustrating! I feel so invalidated & like I just going to have to suffer through this until someone cares enough to research my symptoms or refer me to the right physician. I’m 28, otherwise healthy female & my doctor would rather test me for pre-menopause & put me on antidepressants for anxiety. Like what?!!!!!! 😩😭 I had a mild case of covid in November and my POTS symptoms were exasperated while recovering in January. I have consistently felt like crap the past 6 months & have had no choice but to be my own advocate and research my symptoms. I believe I’ve suffered from POTS since my late teenage years but have never felt so debilitated by it. Wish you luck & health in your journey 🤍

[@seawrightstudios]

You can get a diagnosis if your physician does a tilt table test.

[@lizinawe]

I went through 4 neurologists and multiple ER ADMISSIONS. WHEN I ACCIDENTALLY FOUND NEUROLOGIST WHO SPECIALIZES IN THIS, ALL THE PIECES CAME TOGETHER.. DR R. WISON AT CLEVELAND CLINIC.

[@lizinawe]

What is the supplement that could help?? As loga lipoic acid????

[@Dulcimerist]

Sorry you're experiencing that. I went through the same thing with my POTS. The problem is that POTS and anxiety are both related to an overactive sympathetic nervous system ("fight or flight" response) from too much adrenaline and norepinephrine, or oversensitive adrenergic receptors. This often fools less-educated doctors into misdiagnosing POTS as anxiety. Definitely find a better doctor who can provide better care. Interestingly enough, POTS medications like Atenolol, Propranolol, Clonidine, and Guanfacine are also often prescribed off-label to treat anxiety.

[@lizinawe]

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

[@Fckyouification]

COVID brought all this on for me...

[@chengfusaechao7243]

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 productive.........Hi Girl,i experience ALOT of the same symptoms as You......

[@Dulcimerist]

Have you been screened for Ehlers Danlos syndrome? An endorcrinologist could also screen you for autoimmune disorders that can cause those issues. Hoping you can find some answers and get a good treatment plan!

[@chengfusaechao7243]

@@Dulcimerist i never heard of that MEDICAL TERM b4..i will have to call up my Family physician for Referral to see the Specialist..THANK U!!

[@Dulcimerist]

@@chengfusaechao7243 Ehlers Danlos syndrome is poorly understood by most family physicians, since there are 13 different types of EDS and the criteria and classifications were completely revised and updated in 2017. You'd likely need a specialist to give you a proper screening for it.

[@ek3282]

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

[@Matrix2458]

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

[@LalaLeFlo]

Thanks for this!

[@kimberlydubon7223]

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

[@mudslinger888]

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?

[@Dulcimerist]

Sorry you have both. Have you been screened for Ehlers Danlos syndrome? Both are often associated with EDS.

[@lizinawe]

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

[@Dulcimerist]

It's called SaltStick. My doctor also recommended that for my POTS/dysautonomia.

[@lizinawe]

@@Dulcimerist ty