Diagnosed with POTS and Still Anchoring the News

Summer Dashe is a former news anchor disabled by chronic illness. Her goal is to provide factual, reliable, and accurate information on her social media accounts. Using brutal honesty, a sprinkle of humility, and a dash of sick humor, she hopes her work helps educate, spread awareness, and empower. This is the first of many reports on Postural Orthostatic Tachycardia Syndrome she aired during her time as a journalist.
FULL STORY: wpde.com/news/...

[@TilFurtherNotice]

From one pots gal to another. So glad you shared this story with others! So many of us feel alone in this diagnosis and sharing your story (our story) can only help spread the word! Thank you!

[@mamakimbe1]

Thank you! I have struggled with tachycardia and and genetic uncurable heart disease. It is so good to see a woman talk about how your symptoms are dismissed.

[@nancid.9194]

I have Graves. Deal with the same thing as POTS patients. It’s horrible. Tachycardia every day.

[@TheRenwmn]

I have conditions where Orthostatic Intolerance is more common. This is how I learned about POTS and Orthostatic hypotension. I used to think I didn't have OI even though I knew about forms of it, because I wasn't aware of all the types. When I was tested they found I have Orthostatic Hypertension and also borderline POTS. Now I try to bring up different forms of OI to educate people as they can all be debilitating. Thank you for educating others.

[@stormchasingirl1133]

Your an amazing woman. I have POTS too and your strength is amazing. I’m doing well, but like you I have my bad days.

[@summerdashenews]

Thank you. Hang in there!

[@gregd9954]

Makes you wonder if more men just don't seek treatment (think they are ok, toughing it out, etc.) and that's why it's a disease that is primarily women diagnosed, kinda like TMJ and a few others.

[@summerdashenews]

Not at all. That’s factually inaccurate and sexist. Many diseases and conditions predominantly impact one sex over the other. It doesn’t mean one sex is “tougher” than the other. In some diseases they have the science to show why it hits more of one sex than the other. They don’t yet know why more women are impacted by POTS than men. Research continues and we all hope for answers so treatments and a cure can come soon for all suffering from this condition.

[@muchancie]

I’ve had POTS for 2 yrs maybe longer, I am now bed 24/7 if I try to stand for more than 10 minutes I will Black out, I was using a Standup Walker but now I’m either in a wheelchair or laying down; I’m on Beta Blocker & it helps but I also have very bad Back Problems so I can’t exercise, I have a Wonderful Dr that Diagnosis me as soon as I told him my systems, I’m hoping it will just go away like it all the sudden started, I really feel Sorry for Anyone who has POTS & can’t find a good Dr that will treat them with Respect & give the right Diagnosis

[@hehunches]

I knew a chic named Summer in high school but she never had POTS like I do.

[@emedler]

I'm right there with you. I have POTS as well. I infuse 1 liter of saline everyday which has changed my life. Nothing else helped me feel better.

[@AmethystWoman]

Are you on an IV at home? I feel like it's just a matter of time before I die. I'm a nurse, I think some IV fluid would help me so much. I can't drink enough without nausea to stay hydrated. If you "infuse", do you have a port? I really feel you are onto something. I just read that our quality of life is similar to end stage renal disease. How come we aren't allowed to say we feel that bad? I feel like we sound like hypochondriacs if we were allowed to actually use words that truly describe how we feel. I feel like I'm being a whoose. Or maybe ESRD isn't as bad as I thought if they say it feels like this. (And I know ESRD is horrid!) I'm tired of talking and thinking about how bad I feel (post covid 2 years) and getting ready to accept death and feel very sad that suddenly it feels ok if I die. Or even get family to see this as real. It's like nobody cares. At all. Too scared to admit this could happen to them I guess. How did you get someone to let you have an IV every day. Covid deaths aren't even counting us. And now, post covid suicides. I'm sorry you have this and glad you found a Dr would would think out of the box so you can have a life. 💜

[@summerdashenews]

I’m glad you’ve found something that helps. May Potsies find IV fluids helpful. To the other commenter on here, check out Dysautonomia International’s website for recourses. If you haven’t seen an autonomics doctor yet, I recommend it. 💙

[@jeremygagliardi7063]

Great video! Thank you for sharing! Was just diagnosed and took about two years for me too. Local doctors had me feeling like I must be crazy. It wasn’t until I went to Cleveland clinic that someone knew what was happening to me. So thankful to have an answer now at least. Yes it sucks and it is hard, but I just keep trying to look for the silver linings. You’ll find them if your looking. :) Thank you for spreading awareness and keep fighting the good fight!

[@summerdashenews]

So glad you’ve found doctors to help! Wishing you many better days ahead. 💙

[@Melissa_PhoenixRisingBlog]

So glad you're sharing your story! I've had many of the same symptoms you have experienced since I was in MS (@13-15yo)... I myself just found a doctor that has confirmed dysautonomia/POTS and I'm now in my mid-late 30s. I'm so glad you were able to get a dx within a couple of years (vs 20+yrs).

[@emmab3548]

I have had POTS for over ten years and not one doctor has been able to help my symptoms. I wake up with severe brain fog and fatigue and can’t function until the afternoon. It has robbed me of my career. I do my best to be a mom to my precious son, but I feel like a failure to him. Each day, I try again. By evening, I am able to do some mild activities with him. It is a true disability and yet ironically, you can’t get approved for it.

[@tbrownflee3124]

@Emma B is yours the hyperadrenal subtype? Mine is. My bp goes up when I walk too much.... have you ever heard of or tried DNRS program by annie hopper for it, lots of people fully recovered this way?

[@SDWits]

check out the KZbin channel: Wilson orthostatic exercises. He's my doctor from the Cleveland Clinic and has a ton of instructionals and useful info on his channel to help with POTS! You can also schedule virtually with CC doctors.

[@joshmaclean8206]

My friend with it… her parents are doctors she had to add more salt to everything .. and Gatorade something with electrolytes… couple times a day. That’s helped her a ton. ❤️

[@emmab3548]

@@joshmaclean8206 I have definitely tried that and done it for years. Unfortunately, it didn’t help. They finally came out with a treatment that has helped me, though. It’s called Ivabridine. Life saver.

[@summerdashenews]

Hi all, I love to see patients helping patients! That’s so nice. There are a slew of medications that can help treat the symptoms of POTS. No cure, but options to help lessen symptoms. Dysautonomia International has great resources on the website. An autonomics specialist is key to getting proper care. Wishing you all many better days ahead. 💙

[@BallisticBrunette]

I was bummed when I couldn’t return to my blue collar job. But now I’m bummed because I can’t even do the light stuff (photography) anymore.

[@SDWits]

I didn't want to believe it either when I was finally diagnosed. Took me about 2 years to accept I have POTS. I always thought it had to be hypoglycemia, yet that didn't make complete sense. Looking back, I've probably had it for at least a decade. I went through so many doctors--I felt crazy--and was told over and over it was nothing or it was anxiety...but I knew deep down it wasn't anxiety. It felt different...I would be calm mentally, but my heart would be beating fast. Like the commenter Jeremy, I too finally found a doc at Cleveland Clinic who diagnosed me, and recently learned that CC has some wonderful POTS-focused drs in their neurological institute at main campus.

[@summerdashenews]

I’m so sorry your journey to diagnosis took so long. I’m glad to hear you’ve found doctors to help. 💙

[@tt_looking_glass]

Beautifully done. Thank you for raising awareness.

[@biaanibeu4471]

Thank you!!! John Hopkins in Baltimore has a POTS Clínic with excellent doctors too

[@summerdashenews]

That’s so great to hear!

[@oh_so_simone]

Hello to you Summer...all the way from Melbourne, Australia 😊 Thank you for being brave and using your public platform as a journalist to tell your POTS story; it brought sad and happy tears to my eyes. FINALLY, after almost 10 years, I don't feel so alone with this chronic illness, and somone else in the world truly understands what I go through every day. I'm so grateful you're bringing awareness, and thus more understanding, to POTS. By telling your story you have reached into more hearts and minds than you realise. We will get there; one day at a time, one step at a time. Sending good vibes and hugs your way 😊🤗 xox

[@summerdashenews]

Thank you so much for your thoughtful comment. I'm so sorry to hear you're struggling with this also. I hope you find ways to manage and still have a happy life. Hang in there! Sending you a big hug!

[@tbrownflee3124]

did you e ver try the DNRS program by annie hopper?

[@AmethystWoman]

💜

[@marciacapell1541]

That is terrible suffering. Ive had that for years but no, its root cause is not anxiety, but having those attacks sure makes anxiety go up! Its a terrifying experience for sure. ❤😢no wonder Id rather not stand up too sudden after waking in the morning. Geeeeeeeze its annoying! 😳🤦‍♀️

[@hipdip1505]

Thank you for spreading awareness. It makes a difference.

[@summerdashenews]

Thank you for letting me know. I hope to help however I am able. 💙

[@terristephens2277]

Thank you thank you!! Pots patient here🙏🏻🙏🏻

[@summerdashenews]

💙 Wishing you many better days ahead and the strength to get through the worst of them.

[@soccermom4509]

Thank you so much for sharing as I am one of the many women that also has this.

[@rn2cro03]

Wow! I'm an R.N. and I've never knew about POTS. Thank you.

[@summerdashenews]

Thank you so much for learning!

[@hehunches]

@rn2cro03 Um, very nice of you to say that. As a guy with OI of some form or another(sometimes it looks like POTS sometimes OI, sometimes tachy, sometimes only low bp, all gnarlY) many cardiologists and er docs and many many ECGs and angiograms etc... 48 years later, one day the ECG for WHATEVER reason indicated to my NEW cardiologist that I should be tilt montitored... She never even bothered with a tilt test, she is smart. She did the sit, stand, wait, sit stand, bp deal. and She caught it. Thank god. and Thankd God for care workers and medical staff like you, humble enough to admit that they didn't know. And now, you're in the inner circle, haha thanks

[@denisemoctezuma8632]

Thank you for this video! You gave me hope!

[@summerdashenews]

Always hope! 💙

[@chrissan2457]

I have it. Its disabling.

[@summerdashenews]

It can be very disabling. Wishing you many better days ahead. 💙

[@BushwoodBabes]

Thank you for highlighting this. My daughter has been painting since she was three years old and she is now 20 every day is a battle for her

[@summerdashenews]

💙💙💙

[@PrissyKrissy]

I don’t live in your area but heard you shared stores of viewers this past week. Can you share that clip??!!! Thank you for bringing awareness. Hugs POTsie sister! 💙

[@summerdashenews]

Hi Kristeen! Hope you are well. This is the clip from the newscast that aired. We aired this story about my experience with POTS. Hugs back!

[@LiLac22281]

Wait: where does the white spots come from? I've known (not diagnosed) for over a decade that I have orthostatic hypotension but docs never seemed too concerned. But I just noticed that I have about 10 white dots on my right forearm, which has increased over the years. I only have about 2 on my left

[@summerdashenews]

They are called Bier Spots. They’re not dangerous on their own, but can indicate an illness. In this case, the vascular anomaly is likely due to blood pooling and flow issues associated with POTS.

[@LiLac22281]

@@summerdashenews thank you for your time. I tried to research the spots but got frustrated when I couldn't find anything

[@kategosnell8210]

​@@summerdashenews could they be related to connective tissue disorder?

[@summerdashenews]

@@kategosnell8210 there has been no official research regarding Bier spots and EDS or Bier spots and POTS as far as I have seen. For this reason, the answer is maybe. New discoveries are made constantly. We will find out more answers as research continues. I also have EDS, however the Bier spots only appeared when I developed POTS.

[@kategosnell8210]

@@summerdashenews a nurse with eds said she was dx with the condition by rheumy who spotted her white collagen bumps on her heels etc. She shared that connective tissue disorders are frequently associated with PoTs. Thank You! For being Brave + God Bless the Good Work

[@rogueforager77]

Thank you for speaking out & being a wellness Warrior! I'm waiting to be tested, finally got a doctor to listen. POTS may have taken the dreams I had, but it didn't take away my ability to dream. I'm still me!

[@misslady2147]

Bless you....I suffer from EDS POTS Dysautonomia fibromyalgia MCAS mass cell activation syndrome Anxiety Depression Raynauds Degenerative disc disease c3 c7 Degenerative disc disease lumbar spine Occipital neuralgia Anemia Edema Chronic Fatigue Intermittent fevers Joint pain Right side weakness burning numbness tingling Brain fog (memory loss) Loss of balance Osteoarthritis Chronic falls Neuropathy bilat feet and legs Need both knees replaced Chronic head and neck pain ****Local anesthetic and "twilight" DO NOT WORK on me. I feel everything. sooooo traumatized from multiple surgeries under "twilight"

[@Shindler39]

Hang in there Summer, you are courageous and strong. Have a wonderful day:-)

[@summerdashenews]

Thank you so much for your kindness. Means the world.

[@Shindler39]

@@summerdashenews I am glad it encourage you.

[@ji7584]

Thanks for sharing

[@jenng3649]

❤

[@tbrownflee3124]

has anyone on here tried the dnrs program?

[@summerdashenews]

I’d recommend visiting Dysautonomia International’s website for resources. At this time, the recommendation is certain medications to control symptoms, salt and water, and exercise. This treatment differs between each patient.

[@Monilynn17]

These are the symptoms I have, but not as severe & I've been tested for this and it's not what I have.

[@quiltgirl]

I’ve had this for 13 years.. still need help.. doctor after doctor

[@tbrownflee3124]

@quiltgirl7777 try DNRS by annie hopper or the switch program by mel abbott, its cured people of their pots. it comes from limbic system impairment in brain

[@quiltgirl]

@@tbrownflee3124 yes I’m doing brain retraining and treating now for mold illness..

[@tbrownflee3124]

@@quiltgirl is it the dnrs program? Have you had any successes with your pots?

[@SDWits]

@@tbrownflee3124 limbic system....interesting. I'm currently reading The Body Keeps the Score (recommended by my POTS doc bc POTS can be activated by trauma.) On page 42, it mentions how the limbic area of the brain is the emotional brain. "Intense emotions activate the limbic system, in particular an area within it called the amygdala. We depend on the amygdala to warn us of impending danger and to activate the body's stress response." "Activation of this fear center triggers a cascade of stress hormones and nerve impulses that drive up blood pressure, heart rate and oxygen intake..." I bring all this up because if you can rewire your brain from traumas by rewiring how your amygdala reacts to situations, can you repair yourself from POTS? Is that how the DNRS program works? I've never heard of it til now!

[@summerdashenews]

Hi all, Just to clarify, there is currently no cure for POTS. There are medications to help treat the symptoms, but no cure currently exists. Dysautonomia International has a lot of helpful information on the website as well as a “find a doctor” section to find an autonomics specialist near you. Those are the specialists skilled in treating this complicated and poorly understood condition. Additionally, POTS is not a mental disorder. It’s a disorder of the autonomic nervous system and thought to be neurological. Some research now suggests an autoimmune cause, but continued research is needed.

[@redneckgirl3326]

I was diagnosed with POTS two years ago. By the grace of God, I've been able to remain a 911 dispatcher. I did have to give up my volunteer job as an EMT. I had to sell my horses. I am just now getting back into horses, slowly.

[@summerdashenews]

Oh my goodness. So sorry for the losses this condition has caused you. I hope the dispatcher position is working better. Y’all are appreciated!

[@redneckgirl3326]

@@summerdashenews I am. In fact, I am graduating from college this semester with honors.

[@summerdashenews]

@@redneckgirl3326 oh, how wonderful!!! Congratulations!