OrthoHypo Awareness

Orthostatic Hypotension, a sudden drop in blood pressure, is serious and you should never try to “power through it.”

Orthostatic Hypotension can cause a lack of blood flow to the brain known as cerebral hypoperfusion which in turn can result in a range of brain injuries.

Brain Injury From Cerebral Hypoperfusion Cerebral hypoperfusion can cause a range of brain injuries. When mild, it can lead to syncope, a temporary loss of consciousness characterized by rapi…

This is Orthostatic Hypotension.

Genni on TikTok i haven’t seen much awareness but everytime i get up or move my head or any high activity this is what i experience

Long-term COVID symptoms could lead to more health issues Medical professionals say it's important to pay attention to how you're feeling.

One cause group of people who are experiencing orthostatic intolerance is Long Haulers, like those with other post viral illness and ME/CFS.

Long COVID, Post Viral Fatigue Syndrome and ME/CFS Nearly 1 in 7 people with COVID-19 have symptoms lasting 3 months or longer. Over a million people are thought to have Long COVID in the UK [1]. These people...

Orthostatic Intolerance is common in ME/CFS, post viral illness and Long Covid.

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🦠“We also got worried very early on that one of the long term consequences of this terrible epidemic that there could be a large number of people who develop ME/CFS after covid. *And that’s what’s happening now.* And unfortunately we still don’t know enough to prevent this from happening.”

🩺 Walter J. Koroshetz, M.D
🇺🇸Director of the NIH National Institute on Neurological Disorders and Stroke

👁 Watch the video (trigger warning!)
✍️ Sign for research funding
🧠 Understand the symptoms
🦠 REST if you get COVID
🗣 Share for awareness

https://www.change.org/p/united-states-congress-additional-government-funding-for-myalgic-encephalomyelitis-chronic-fatigue-syndrome

🔗 Long Covid ➕ ME/CFS = 👯‍♀️

Sign the Petition Additional Government Funding for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Life hacks for all forms of Orthostatic Intolerance!

COVID-19 Long Hauler Still Suffering From Aftereffects One Year Later Imagine recovering from COVID-19 only to develop new symptoms and not know what's happening.

Me: My heart rate goes crazy every time I stand up.
My friend: So you have a heart problem?
Me: It’s a little more complicated than that…

Dizziness Upon Standing Can Lead to Falls and Fractures (Published 2020) The problem, a brief but precipitous drop in blood pressure that causes lightheadedness or dizziness when standing up, is called orthostatic hypotension.

Many with and experience similar symptoms such as Orthostatic Intolerance - POTS, Orthostatic hypotension, and dysautonomia.

The most seasoned Long Haulers have been at this for almost two years- but many of those with ME/CFS have suffered for decades, many disabled and without proper diagnosis or treatment.

We are asking that everyone share the message - Long Haulers need to STOP. REST. PACE. from

Many doctors at the are recommending that their patients undergo in for exercise intolerance, which has been proven to make the condition worse.

Resting and pacing is the only real treatment we have right now for slowing our progression while we wait for a cure.

Here’s some more life hacks for Orthostatic Hypotension! What yours?

Folding travel chair
Hydration
Midsection Compression
Sitting while cooking

Megan is 16 years old and living with Orthostatic Hypotention.

I have had OH since I was 9 years old. Diagnosis took years. They’d always put it off as a virus or cold. One day at the doctors office they were running all sorts of tests, did an EKG, etc. They did my blood pressure laying down, sitting up, and then standing.

When I stood and the nurse got my blood pressure reading she said “hang on I’ll be back with the doctor,” with a very shaky voice and almost sprinted out of the room. I guess she’d never seen a BP drop like that before.

I do not know the cause of my OH. All that I’ve been told is that it’s because I’m petite and is genetic. I am not completely sure myself if that’s fully why.

I have to be careful standing at any time.

I constantly have to snack throughout the day and have fluids in my body at all times. There’s times I have episodes at school so all my teachers have to know and know the procedures.

Before going swimming I have to check my blood pressure, eat something salty, and drink water and get into the water slowly. If i just get straight in then I get super dizzy and nauseous.

There’s been times I’ve had to sit down on the floor in stores.

Sometimes standing for too long can be really really painful because i’ll get headaches and super nauseous. Recently I’ve started fainting and getting nauseous when sitting in chairs for too long because of being straight up I’d guess.

I make sure I have someone I trust around me and a railing to hold onto.

I’m CONSTANTLY tired no matter how much sleep I’ve gotten. If I don’t have a nap at some point I get really sick and dizzy.

The advice I would like to give people living with OH is that you aren’t alone. There’s no need to feel embarrassed or ashamed of it, and always trust your body.

I wish that our loved ones knew that it’s not just “no big deal” because it’s common.

OH affects our everyday life. Be gentle on your loved one with this issue when they’re getting up slow, needed rest, etc.

Share your story - link in bio

Carla is 42 years old and living with Orthostatic Hypotension.

I have been living with orthostatic hypotension for around 15-20 years. My symptoms used to come and go so I’d start having tests, then I’d feel fine and the doctor would tell me to come back if the symptoms came back. I eventually got diagnosed 2 years ago. I am not really sure of an underlying cause.

I can’t tolerate hot weather. I struggle to stand for longer than 10-15 minutes at a time e.g. if presenting at work, standing in queues, cooking etc. I’m fine if moving lots/walking. I can’t get up quickly without getting dizzy/losing vision. I have nausea a lot which I think is linked.

Advice for others with OH
Just push for tests. I let myself be fobbed off for quite some time because my symptoms were so sporadic when younger.

And drink lots of water – it’s harder than you think but has really helped me.

Share your story -
https://orthohypo.com/2021/10/06/call-for-stories/

Orthostatic hypotension: A common problem in Parkinson disease, multiple system atrophy and related disorders An article just published by Dr. Horacio Kaufmann and Dr. Jose-Alberto Palma in Movement Disorders Clinical Practice reviews the frequency, diagnosis and treatment of orthostatic hypotension, a com…

Myalgic encephalomyelitis, or ME, is a complex chronic disease that presents with symptoms in multiple body systems.

This is often triggered after a virus and presents in flares.

Research is starting to connect the dots, proving that Long COVID (post viral illness) is leaving many with dysfunction of the autonomic nervous system and the inability to stay up right because of increases in heart rate and / or drops in blood pressure. Just like ME/CFS always has.

Many of us are just waiting for the science to catch up and find a cure, all the while struggling with accepting our new limitations and disabilities.

People with ME experience a substantial loss of physical and/or cognitive function. The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer. Someone with mild ME may be able to work full-time with accommodations; someone with very severe ME may be bedbound and have trouble communicating. ME is a relapsing-remitting condition. Individual patients experience significant fluctuations in their well-being from day to day, week to week, and month to month.

Mask wars, denying that COVID is dangerous, and continuing life as usual will unfortunately cause many many more people to join our struggle. Please be considerate.

IT'S DYSAUTONOMIA AWARENESS MONTH! The Spoon Theory was written by Christine Miserandino as a way to explain to healthy individuals what it's like living with a chronic illness by describing the energy output throughout the day. Dysautonomia patients tend to have a limited energy supply which is represented using spoons. If a patient does too much one day, it can often leave them short on spoons the following day.

Take 1 Spoon away if you didn't sleep well, forgot to take meds, or missed a meal. Take 4 Spoons away if you have a cold. If you only had 12 Spoons in a day, how would you use them?!
https://bit.ly/LearnMore_CCN

Help people help you. Communicate about what’s happening with your body, what it feels like, how they can help, what makes it worse.

“Orthostatic hypotension is common and dangerous; it has neurogenic and nonneurogenic causes. We present the case of a 40-year-old man with severe neurogenic hypotension, caused by young-onset multiple system atrophy. In patients presenting with neurogenic orthostatic hypotension, underlying neurodegenerative diseases should always be considered.“

https://www.sciencedirect.com/science/article/pii/S2666084921002357

Dysautonomia Causing Severe Orthostatic Hypotension: An Important, Early Finding in Neurodegenerative Disorders Orthostatic hypotension is common and dangerous; it has neurogenic and nonneurogenic causes. We present the case of a 40-year-old man with severe neur…

Here’s some of my life hacks! What yours?

I was recently asking myself this same question during a horrible flare of OH.

I wasn’t able to walk from room-to-room without needing to sit and bring my BP back to normal every few minutes. But I have things I want to do and need to do!

Others in my OH support group use wheelchairs for flares. This article made me feel better that I’m not the first person to struggle with this decision. Should I just be staying home? Am I disabled enough? What will my family think?

I tried to go out during a flare last weekend and sitting on the floor in a store, repeatedly, not knowing how I’ll make it to the register, waiting in the check out line, and back to the car - wasnt worth it. So I got the chair. Now I know I can go the places I need regardless of what kind of day or week I’m having.

How Do I Know If I Need a Wheelchair? A guide for people with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome

While both can be caused by , disfunction of the autonomic nervous system, POTS and Orthostatic Hypotension (OH) are two separate conditions.

POTS is diagnosed only when orthostatic hypotension is ruled out and when there is no acute dehydration or blood loss.

A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 beats per minute in adults, or at least 40 beats per minute in children and adolescents.

Orthostatic hypotension is when your blood pressure drops more than 20 mmHg in systolic pressure and 10 mmHg in diastolic pressure within three minutes of standing up. Delayed Orthostatic Hypotension is a fall in blood pressure after 3 minutes and can progress to the classic form.

Dysautonomia is frequently referred to as an invisible illness. It is a highly misdiagnosed illness that is estimated to affect over 70 million people worldwide. People suffering from dysautonomia often look perfectly healthy and routine lab tests typically confirm this. However, it can be debilitating and at times prevent a person from performing traditional everyday activities with no obvious physical symptoms.

How can I help?

Allow the person to lay down. Do not attempt to make them sit up. Standing and walking is not possible and can make the condition much worse.

Most people with OH have both good and bad days. Encourage your loved one to take things easy on “bad days.” It can be difficult for them to learn their limits or gauge how their body will react.

Your loved one can start to feel better by laying with their feet up, drinking water, electrolytes, eating salt and salty foods, or getting IV fluids from the emergency department.

Most Important

The blood needs to flow back to the brain, encourage laying with feet up. Water and a snack will help the person recover faster. It may be difficult for the person to speak, so be proactive with your care.

OH can be dangerous. Studies are showing a relation between strokes, heart problems, and mortality. Take your loved ones symptoms seriously. You cannot see high or low blood pressure, just like you cannot see heart disease or diabetes.

It’s good to have a plan with your loved one to discuss their specific needs while they are feeling well. That way you can better accommodate them when it happens.

Stay tuned for more on Coat Hanger Phenomenon and learn more at TheDysautonomiaProject.org
💙💙💙

We believe you!

This is not limited to POTS.

Doctors warn of possible rise of debilitating nervous-system disorder in patients with long COVID-19 Doctors are warning of the possibility of a surge in cases of a debilitating nervous-system disorder that may be associated with long COVID.

Show me your compression dog!!!!

With Orthostatic Hypotension - Compression is the name of the game.

Some sources break down the causes of OH :

⁃ Medically induced

OH can be caused by certain chemotherapy drugs, diuretics, vasodilators – i.e., calcium blockers and nitrates, antipsychotic medications, antidepressant drugs, and alcohol.

⁃ Non-neurogenic

Conditions effect blood volume or affect the heart such as cardiac pump failure are examples of Non-neurogenic OH.

Non-neurogenic causes can include hypovolemia, cardiac pump failure, association with heart block, disorders of heart rhythm (tachyarrhythmias), narrowing (stenosis) of the main artery of the body (aorta), or a heart attack (myocardial infarction), and venous pooling. Conditions including dehydration, chronic bleeding, adrenal insufficiency, diabetes insipidus, diarrhea, and chronic vomiting.

– Neurogenic orthostatic hypotension (NOH) is broken into Primary and Secondary

—⁃ Primary neurogenic

Individuals with OH due to primary or secondary neurogenic causes are referred to as having neurogenic orthostatic hypotension (NOH).

Primary neurogenic causes refers to individuals with an underlying primary disorder that is involved with malfunction of the autonomic nervous system such as multiple system atrophy (MSA), Parkinson’s disease, pure autonomic failure, dopamine beta-hydroxylase deficiency, Lewy body disease, familial dysautonomia, and non-diabetic autonomic neuropathy.

—⁃ Secondary neurogenic causes.

Secondary neurogenic causes can include spinal cord problems such as transverse myelitis or tumors of the spinal cord and various peripheral neuropathies such as amyloidosis, Guillain-Barre syndrome, diabetes mellitus, and the hereditary sensory and autonomic neuropathies.

In many cases, the underlying cause of OH remains unknown or unproven (idiopathic). Most idiopathic cases are believed to have an underlying neurogenic cause.

Source:
https://rarediseases.org/rare-diseases/orthostatic-hypotension/

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Raise awareness for this limiting condition.

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www.OrthoHypo.com

RESOURCES FOR LOVED ONES
The more you learn about OH from medical professionals, medical articles, or listening to other people's experiences, the better you will be able to help.

For Loved Ones Orthostatic hypotension is confusing. Lots of big words, not a lot of resources, and little understanding.

HELP RAISE AWARNESS
To raise awareness and understanding, we need stories from those affected by OH. If you or a loved one would like to share your story on our site, please consider filling out our short survey to craft your story. We can share as much or as little as you would like with your approval.

Call for Stories If you or a loved one would like to share your story on our site – Click in for more details.

There’s not a lot of research into this area, but all studies suggest an increased risk of mortality for those living with Orthostatic Hypotension.

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“The present data reinforce the serious long-term implications of OH. Individuals in our cohort with OH at the time of original testing had a 10-year mortality rate of 64% and individuals with DOH that progressed to OH had a 10-year mortality rate of 50%. In contrast, those with DOH that did not progress to OH and our control group had 10-year mortality rates of ,10%, values similar to the expected 10-year mortality rate (7%–9% for that age range) of the general population. The long- term outcome of this group will require further study.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4626242/pdf/NEUROLOGY2014633701.pdf

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“Conclusions— OH predicts mortality in middle-aged adults. This association is only partly explained by traditional risk factors for cardiovascular disease and overall mortality.”

https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.105.598722

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“A total of 56 125 subjects with 11 580 mortality cases from nine cohorts were included in the meta-analysis. Pooled results indicated that the presence of OH at baseline was significantly associated with an increased risk of all-cause mortality (adjusted risk ratio (RR) = 1.40, p

Journal of the American College of Cardiology

“Orthostatic hypotension (OH) is arguably the most incapacitating feature of autonomic failure. The disorder is highly prevalent, but due to diverse clinical presentations, many of which are nonspecific, it is frequently unrecognized until late in the clinical course.”

https://www.sciencedirect.com/science/article/pii/S0735109718357371

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Raise awareness for this limiting condition.
www.OrthoHypo.com

Raise awareness for this limiting condition.
www.OrthoHypo.com

Raise awareness for this limiting condition.
www.OrthoHypo.com

Raise awareness for this limiting condition.
www.OrthoHypo.com

OrthoHypo Awareness updated their website address.