Jenna’s Journey with Idiopathic Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS)

*Jenna's Healthful Journey™ through Hypersomnia, EDS, and POTS

*Jenna's Healthful Journey™ with Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS)

Join us for an interview with Jenna and discover how she has been able to manage through her journey after diagnosis with Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS). This is Jenna’s Healthful Story™. Please note that the video may only play in landscape mode on a mobile phone.

Diagnosis

Treatment

Lifestyle

Navigate Jenna’s Journey with Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS)

2:56 Tired, weak, and uncoordinated from a young age

3:25 Mother disabled due to similar ailments

4:32 Falling asleep at the drop of a hat

4:54 Problems getting to work on time

5:51 Isn’t everyone exhausted in graduate school?

6:13 Falling asleep at 7 PM

6:45 Three sleep studies before Idiopathic Hypersomnia diagnosis

8:28 Yawning every 10 minutes, even as people were talking to me

9:23 Sleep attacks – a compelling need for a half hour nap

10:35 A heaviness in my eyes, constantly wanting to close

11:52 Brain fog – sometimes I cannot remember words – days when the simplest words escape me

13:48 Coping with memory issues with lists of to-dos

15:35 Mood and Irritability, Short-Temperedness

16:56 Just didn’t have energy for hobbies at all

Diagnosis

20:57 Distinguishing between Idiopathic Hypersomnia and Narcolepsy

22:50 Starting with Instant Release Ritalin, 20 mg twice per day, made me jittery and nauseated

27:50 Extended release methylphenidate hydrochloride (Concerta) and Modafinil (Provigil)

29:32 Biggest improvement was seeing a neurologist

30:46 Diagnosis with Ehlers Danlos Sydrome [Chronic fatigue contributes to poor health-related quality of life in the Ehlers-Danlos syndromes (EDS)]

30:50 Diagnosis with Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects blood flow. POTS causes the development of symptoms — usually lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat — that come on when standing up from a reclining position and relieved by sitting or lying back down

41:36 The number one thing is to listen to your body.

42:55 If your diagnosis doesn’t feel right or you feel it doesn’t explain everything, keep digging.

44:19 It’s never too late to get that diagnosis and figure out what’s going on.

"If your diagnosis doesn’t feel right or you feel it doesn’t explain everything, keep digging. It’s never too late to get that diagnosis and figure out what’s going on."

Jenna

Managing Through

30:46 Diagnosis with Ehlers Danlos Sydrome [Chronic fatigue contributes to poor health-related quality of life in the Ehlers-Danlos syndromes (EDS)]

41:36 The number one thing is to listen to your body.

42:55 If your diagnosis doesn’t feel right or you feel it doesn’t explain everything, keep digging.

44:19 It’s never too late to get that diagnosis and figure out what’s going on.

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*Jenna's Healthful Journey™ through Hypersomnia, EDS, and POTS

*Jenna's Healthful Journey™ with Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS)

Diagnosis

Treatment

Lifestyle

Navigate Jenna’s Journey with Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS)

Diagnosis

Managing Through

Our Latest Videos

Share Your Story

Support our Healthful Mission

Support Our Healthful Mission™

Quick Links

Useful Links

Contact Info

Follow Us

CONTACT US

*Jenna's Healthful Journey™ through Hypersomnia, EDS, and POTS

*Jenna's Healthful Journey™ with Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS)

Diagnosis

Treatment

Lifestyle

Navigate Jenna’s Journey with Hypersomnia, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS)

Diagnosis

Managing Through

Our Latest Videos

Share Your Story

Support our Healthful Mission

Support Our Healthful Mission™

Quick Links

Useful Links

Contact Info

Follow Us

CONTACT US

Our mission is simple: to respectfully and accurately chronicle indivdiuals journeys through illness to inform, empower, and inspire each of us on our journeys to better health. Our voices, together, can make a difference for each of us, and for each other. Thank you.

Our mission is simple: to respectfully and accurately chronicle indivdiuals journeys through illness to inform, empower, and inspire each of us on our journeys to better health. Our voices, together, can make a difference for each of us, and for each other. Thank you.

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