Chronic Orthostatic Intolerance

Hello everyone
My name is Lizzy and I'm 25.
I have hadPOTS for quite a while but not like this. I suspect I developed it after I got in a really bad roll over crash in 2020. I drove with a migraine with aura, just trying to get home because my aura was starting (I have had migraine since I was 6, it was raining and that's my trigger, and I hydroplaned and rolled off the highway at 75mph). They did an MRI and CT and everything was clear but ever since then I had severe coathanger pain and would see chiropractors and also get lidocaine injections in my back because at points I couldnt turn my neck left or right. Then, a month later, I started fainting if I got really hot, my sodium and potassium was reading low, and I was told I had mild POTS. But it was *mild*. It only rarely flared. Only in the fall, or if I was really hot or dehydrated or really stressed. I'd be told to have more sodium and water. To stay out of the heat, watch out for dizziness, wear compressions. There was no tilt table test or follow up. I'd go on and off a really low dose of propranolol and that was it, the end, that was as bad as I thought it would ever be.

I was really active, very academic, very go, go, go. I got married, I got ready to finish my bachelor's, I worked in a lab and went to school full time and got ready to apply for grad school, all while managing the fringes of poverty and scraping by and budgeting every last cent for my family to make it. I was a deliver driver full time in an unairconditioned car this summer...but I needed to pay bills and I had Gatorade and watched for my triggers and bills HAD to be paid.

And then? Then I got sick. Like really sick.

Covid tested negative. Flu tested negative. Strep tested negative. It may have been mono. I don't know what it was, but it was awful. It doesn't matter what it was, I had a 104 fever and I've never been the same. Fatigue like I've never felt before in my life, weird respiratory symptoms, and suddenly, my POTs symptoms were worse than they had ever been.

In August the semester started. I was still off. I was falling asleep in class. That never happened, I'm a straight A college student. I thought maybe it was my thyroid because my mom has hypothyroidism. I scheduled an appointment. 3 weeks before the appointment, I fainted over and over and over. I went to the hospital, and they admitted me for extreme tachycardia, and I was there for like 2 weeks. They did work up after work up. Test after test. Everything was inconclusive or negative except orthostatic values pointing to POTs. They gave my fluids and 40 my of propranolol, pt, they did a short eeg. We are asking for a longer one because I throw up at flashing lights and the world smells like paint thinner sometimes before I faint so we are still not convinced I'm not sometimes having seizures.

I was released when it was shown I could walk very short distances without fainting but I need a mobility aid, at the bare minimum a cane, if not a wheelchair. I had to leave school. I cant drive. I am basically bed bound. I had to cut off almost all my hair because I can only tolerate lukewarm water for a shower 1x or 2x a week so my long hair was matted, Im still fainting at least 2x a week, I have a home health aid, I'm getting daily orthostatic migraines from literally just standing and going to the bathroom (our apartment is tiny, like 525 square feet), I cant cook for myself anymore because I almost fainted into the stove, and if I'm not fainting I'm vomiting. Im so tired and I hurt all the time and my brain fog is so bad and my heart rate is so high from literally just sitting up and doing absolutely nothing. I got visible and I'm going into exertion sometimes from like. Shifting in bed. Or digesting food. My stand tolerance is like. Presyncope at 3 minutes fainting or vomiting at 5 minutes.

I need to know this isn't going to be the rest of my life. I see cardiology Monday. Tilt table will be scheduled then, it would have been sooner but he was on vacation. Its the same doctor I saw in the hospital.

Has anyone had similar stories? Does anything make it better? Please tell me it gets better??

Hi! I’m Ashley and am new here! I suffer from severe mental health and physical health issues. I am excited to have joined this platform and officially be an “Mighty” lol. I’m pretty unfamiliar with this app/website but I am super hyped to learn the different things to do on here! Because I’m just getting started, does anyone have any tips, some cool things you can do on The Mighty and if you’re a fellow spoonie/dealing with similar issues I do too? Maybe I can make some friends that truly get these struggles…because we all know that nobody gets it like the ones that live it…aka US. I look forward to meeting any future friends!! Again please reply with any helpful information or to let me know of others on here dealing with the same things please!♡

#MightyTogether #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ADHD #OCD #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #MastCellActivationDisorder #Gastroparesis #Dysautonomia #OrthostaticHypotension #ChronicPain #ChronicIllness #ChronicOrthostaticIntolerance #ChronicFatigueSyndrome #Migraine #Insomnia #Psychosis #PanicAttack #PanicDisorder

A little history: I’ve had GI problems for my whole life, yet only first started seeking care when a newer problem arose in 2006. Then after 2017, I just didn’t put in time for my health since college courses and work were my priority.
However, recently, I started investing my time to my health because there were too many problems interfering with every aspect of my life and having gone unaddressed for far too long.
I’ve been trying to track / manage my pain and fatigue; and lately my significant other has been commenting negatively about my frequent bathroom use. Recently I attended a workshop on nutrition relating to one of my conditions which made me see more urgency in getting my GI issues better managed. Then I’ve started a headache program that indicated a link with GI issues to headaches.

But I spoke with a doctor yesterday, covering for my primary provider; she wouldn’t let go of this idea that my symptoms were related to Covid or long-Covid, even though I clearly stated these issues have been ongoing since 2006. She wouldn’t refer me to a specialist either. So end result: she said to try over the counter medication (again) and to do the FODMAP diet, which would be easier to accept if I wasn’t financially restricted getting groceries for 2 people and the condition/space of my kitchen was better for 2 very different diets.
I’m just so tired of having to track, monitor and be aware of so many things relating to my health - then also having to do this for other areas of my life. There are so many variables; too many in fact!

**Does anyone have any recommendations on how to make adjustments and tracking more manageable when there are so many symptoms and variables to track?**

I have a pain journal, but I’m finding it hard to organize it effectively to track and monitor all these various symptoms and conditions (thanks to ADHD overwhelm). Could really use help or tips on what has worked for anyone else who has had to make a lot of adjustments for various conditions in a relatively short span of time - I just started getting care and treatment for multiple conditions this May, and primarily have focused on pain management, ADHD, and PTSD. #JointHypermobilitySyndrome #Fibromyalgia #ADHD #ChronicOrthostaticIntolerance #ChronicFatigue #ChronicPain #ChronicIllness #IrritableBowelSyndromeIBS #HypermobilitySyndrome

I’ve been diagnosed with HSD/hEDS, Orthostatic Intolerance (POTS-like symptoms), Chronic Migraines, ADHD, PTSD, and Fibromyalgia. Most of my medications prescribed are alternative use as treatments for my conditions, except my ADHD medication. So, it’s a lot of trial and error to see what works because of the general invisibility of my conditions & most being poorly understood, if not stigmatized.

Which brings me to why I’m posting - not only is this exhausting and frustrating for myself, but my partner gets extremely upset whenever I decide to try a new medication prescribed or try adjusting my medication with provider recommendation. Although it is voiced and agreed that we want me to feel better and not be so impacted by my conditions, it seems like trying out a medication to see if it helps is something that isn’t acceptable for him.

Some of the concern I understand as I have these anxieties about trying new medications. But I’m also willing to try something if it’s known to be used for my conditions and there’s a chance it will make me feel better, which in turn makes both of our lives easier… I’ve tried medication for my PTSD, but that didn’t work for me, so my provider and I agreed to discontinue since I found therapy to be efficient. That and HSD/hEDS are the only conditions I do not take medications for right now (most medications for hEDS/HSD are for chronic pain and comorbidities, though). But those 2 are mainly managed through other modalities; some of my medications can help reduce the frequency or severity of symptoms caused by those 2 conditions. It’s not perfect, and I’m still struggling to get better management of my symptoms that I get the relief needed to function more.

However, I need to alert my partner in case there’s side effects requiring medical attention. And I think fear is partially why he gets upset, but it’s directed at me in a way like I don’t actually need this medication or at least have no reason to try it to see if it works. He will make comments as if I have not looked into the medication before trying it out & as if I have not been significantly more impacted by my unmanaged symptoms over the past couple years that I can’t even do half the things I used to be able to do.

But all my conditions require(d) trial and error; at least with ADHD, the trial and error was brief in comparison to all my other conditions, which were more delayed in receiving diagnosis & dismissed for over a decade. And it’s also why multiple modalities are worth exploring since the delayed diagnoses have resulted in more complexity requiring longer recovery time overall.

So I ask…
How do you cope with all the trial and error with treatments/medications for management of dynamic and often poorly understood conditions?
How do you help the ones closest to you understand that this trial and error approach is what it takes to hopefully be able to function better with complex, dynamic, and multiple health conditions?

#JointHypermobilitySyndrome #HypermobilitySyndrome #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicOrthostaticIntolerance #Migraine #ADHD #PTSD #Fibromyalgia #ChronicPain #ChronicFatigue #MentalHealth

With fibromyalgia, orthostatic intolerance (most likely POTS), and HSD/hEDS - I’m finding I need more pillows that provide support while resting reclined in bed and for sleeping without dislocating/subluxation.

** Any recommendations for pillows that support neck while sleeping? Or neck support while sitting reclined on the bed and back support pillows? **

I’m just curious if there are types of pillows or specific brands that anyone can recommend. My cervical & thoracic vertebra shift a lot while I sleep and my shoulder tends to dislocate while sleeping on my side. But I also don’t get enough neck support with my current pillows when I sleep on my back. I just can’t seem to find pillows myself that help me. #Fibromyalgia #HypermobilitySyndrome #JointHypermobilitySyndrome #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #ChronicPain #ChronicOrthostaticIntolerance

Hi, my name is TLindsey73. I'm here because I have been diagnosed with Sjögren’s with CNS involvement, gastroparesis, POTS, and small and large fiber neuropathy. I worked frontline during covid as a respiratory therapist. I was symptomatic for covid but tested negative with several other healthcare providers. I started having issues before but it wasn’t as apparent until December 2021. one week before I got married. my quality of life has forever changed. I am seeking support from others who also experience symptoms. I am seeing most of my doctors are not knowledgeable of Long Covid. my research points to this. I look forward to sharing support and encouragement with others.

#MightyTogether #Gastroparesis #ChronicOrthostaticIntolerance

Hi, my name is DisabledLiv. I want to spread awareness and figure more about my cond

#MightyTogether #ChronicOrthostaticIntolerance #pans/PANDAS #CommonVariableImmuneDeficiency

Hi, my name is CantDance. I'm here because I found a post I could totally relate to and I would like to gain more insight into how I can improve my days, relationships, and chronic illnesses in any way possible. I was diagnosed with IBS-D in 2006, PTSD, generalized anxiety and depression in 2008, and in 2019, I finally went to Mayo Clinic and saw 5 specialists including an Interdisciplinary MD and was diagnosed with myalgic encephalomyelitis(ME/CFS), fibromyalgia, autonomic, autonomic nervous system disorders, centralized sensitivity syndrome (CSS), and allodynia on top of all of my previous diagnoses. My chronic conditions had flared after a kidney stone surgery at Mayo’s hospital. I came to recognize other times in my life when I was having a flare but didn’t know what it was. Things got worse after having Covid-19 in Dec. 2020. I was once an active involved parent & grandmother and a ballroom dance instructor/choreographer/performer and social dancer. Life is not the same! I’m lucky to have a loving husband and four understanding adult children. although it’s hard for them to understand the scope of my illnesses, they do their best to get educated. I still struggle with limiting my energy expenditure, guilt over not contributing financially to the household as I once could, incurring medical expenses, and missing my old life. Thanks for letting me join in.

#MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #ChronicOrthostaticIntolerance #ChronicPain #MyalgicEncephalomyelitis