(This post contains affiliate links if you would like more information see the disclaimer section).
(I am also not a doctor, and just live with this disease among several others myself, I am not an expert but have done quite a bit of research and read some of the books below. But I do not know everything and I am just trying to bring awareness to this cause for October and every month!)
October is dysautonomia awareness month, keep reading below to help bring awareness to this disorder.
Dysautonomia, let me guess you think this is a hard word to pronounce??? You are not even sure how to pronounce it, well if you think the word is hard to pronounce living with the disease is even harder. October is dysautonomia awareness month, this is an illness that has no known cure. With that being said, I want to bring as much awareness to this cause as I can. If you know someone or are someone living with this, you can understand why awareness needs to be brought to this special cause. Pronounced (Dis -aw- tuh – noh- mee- uh), this word is more of an umbrella term for several chronic illnesses.
A little about my story;
I was diagnosed with dysautonomia back in 2011/2012, although my doctors suggest that I have had it since I have been a teenager, with some of the unknown symptoms I had growing up. Could have been sooner than that, for most of us that suffer from this disorder we wait several years before even finding out what is going on. I waited several years before any doctor would even listen to me. I was told things like this from several doctors “it is just stress”, “it is all in your head”, “no person could have any of these problems, it just is not possible.” Those are only some of the idiotic non-sympathetic quotes I got from doctors. Even when I could not speak for myself, my mom was told some of the same exact things. Doctors at one point, pinned my parents against me, told them that “school was just getting to me, and that I could not handle the stresses of life.” Something like that, I can not remember the exact words because I was not there when the doctor said these things to my parents. Although I can tell you this, I am sure my mom remembers word for word and she only could watch me suffer because no doctor wanted to help me.
Dysautonomia and symptoms;
Soo… what is this dysautonomia that I have and keep talking about?? This is a disorder that refers mostly to the autonomic nervous system in one’s body. According to dysautonomia international and Cleveland clinic. This is again said to be an umbrella term that is used to describe so many different medical conditions that cause a malfunction in the autonomic nervous system. Now, what is the autonomic nervous system in one’s body?? We all have it, this is the system that controls functions of the body that are not consciously thought about. This can include, but is not limited too; your heart rate, your orthostatic (blood pressure), the digestion process, dilation of the pupils, the temperature control (hot and cold temperatures in the body), as well as kidney function. Whoa!! That is a lot that could go wrong with the body at any second am I right?? Well, when living with dysautonomia it is hard to regulate all of these systems. A person may suffer from the following;
- Abnormal heart rates: An example that I will give you is say someone has a normal heart rate of 60 BPM, well they could stand up and it could jump up to over 100 BPM in a matter of seconds. You can feel like you have run a marathon and all you have done is stand up, that’s it.
- Fainting spells
- Blood pressures that fluctuate
- Breathing problems
- Irregularities with sweating or being cold
- Chest pain
- Frequent urination
- Overactive senses (this can happen more with loud noises and smells)
People that get diagnosed with this disorder in the setting of the central nervous system generally have a poor long-term prognosis. There are at least 15 different types of dysautonomia and as the time has gone on for myself being diagnosed with it, I have read several books, spoke with many doctors and done my research.
One of the most common forms of dysautonomia and what a lot of people relate it to is called P.O.T.S (Postural Orthostatic Tachycardia Syndrome). There is quite a bit of research on this and most researchers have actually found that there are high levels of auto-immune markers in people with the condition. Meaning that those who have been diagnosed with POTS most likely have some sort of auto-immune disorder, for example, this could be Multiple Sclerosis. One of the conditions that can also be linked to POTS is Ehlers Danlos Syndrome. EDS is known as a collagen protein disorder that leads to stretchy veins and joint hypermobility. The research for POTS is still an ongoing thing and will continue to be because this form of dysautonomia also has no cure
Furthermore, I know I have said a few times there is no cure for dysautonomia and being a patient myself with it, this is why I fight as hard as I can for a cure. There is, however, treatments for it, which include several medications and therapy. I am on several myself, and sometimes I don’t know whether to just take my morning pills for breakfast or eat breakfast too. Yes! It is that many medications! Then there is what I used to do to help with the EDS and dysautonomia and that is physical therapy, occupational therapy, and speech therapy. All these types of therapies are incredibly helpful, but sometimes insurance will only cover so much. That is when you have to go to other types of treatment plans. Above I mentioned how with this disorder
Concluding, if you would like to read more information on dysautonomia or want any clothing gear to support this disorder. You can click on any of the links below.
Books you will love and want to read;
Shirts for you to wear for awareness;
Shirts to wear to support others (family, friends, etc);
Testimonies from others;
(These are people from all over the world, who are warriors in dealing with this disorder. Here are their true stories, I am very lucky to have met and spoken with each one of them. For their privacy, I have only added a first name, their state, and age. Everything that is here is what they sent to me in a message and what they consented to. We all have a story to tell)!
Lauren From Houston; Age 26
“Lauren, age 26, from Houston Texas. Diagnosed at age 26. 2 years to get diagnosed. Mornings aren’t too bad for me once I wake up but I give myself an extra hour in the mornings so that I can slowly sit up and I’m not just standing right away. I work as a pediatric physical therapist where luckily I have the flexibility of my own schedule. Sometimes I have to lay down in the middle of the workday to help with symptoms. Thankfully right now a lot of my patients are babies so I can sit down throughout the day which helps. I consistently feel the brain fog day in and day out. Night time after work seems to be the worst and my fatigue really hits. I have really vivid and scary dreams sometimes and other times I wake up in the middle of the night drenched in sweat even though AC and fan are on.”
Maria from Bolivia; Age 26
“My name is Maria, I’m from Bolivia in Latin America. But very soon will be living in the US. I’m 26. have had symptoms of dysautonomia for as long as I can remember. My father is a doctor and he didn’t think that something was wrong, so whenever I complained about feeling like my heart was going to explode in gym class, chest pain, nausea, dizziness, headaches, etc. He said that I was just his lazy little girl. My mother was concerned about my hair loss and the fact that I was always cold. She also noticed that no matter how exciting or special the occasion, I couldn’t stay awake at nights (I had to take a nap during my sister’s wedding reception and a lot of family parties.) When mentioned to the doctors, my symptoms were consistent with thyroid problems. That’s what they always said as the tests would come back normal, habitually coursing with mild anemia but everything else was remarkable. I only fainted once while observing a surgery (standing up). As this never happened before, my dad sent me to a cardiologist, he was horrible to me and told me that I was anxious and that my EKG was normal, so he refused to run any other test. I began medical school and the first years were ok. I was used to my symptoms and now I know that I’m lucky enough to not have severe ones. When I started my rounds (standing for longs periods of time) I experienced very bad shortness of breath, chest pain, palpitations, and tachycardia. A doctor of mine (my favorite teacher) realized that something was very wrong with me. He sent me to the E.R. and my BP was very low, as was my oxygen saturation; my heart was going crazy. After talking for a while, he told me that I had orthostatic hypotension and that I should be fine as long as I had salty foods, plenty of fluids and using compression socks. I met a doctor, one who became a really good friend to me. She looked at me one day and asked if I had hypermotility in the joints, I showed her that was correct and as we started talking she told me that she was diagnosed with Dysautonomia herself, and made perfect sense to me. My TTT was positive and I also have transitory pupillary paralysis. Currently, I’m waiting to be tested for EDS and glad that I finally have some answers. As a doctor, I hope that everyone gets the best care possible. I promise that I would listen to my patients as I, myself, needed to be heard, and I will spread everything there is to know about Dysautonomia and POTS”.
Jeana from Mississippi; Age 48
Jeana, I’m 48 and from Brookhaven Mississippi. I was diagnosed with POTS April 3, 2018. Also, March 27, 2018, I was diagnosed with Microvascular Ischaemic Disease and Bi-lateral Occipital Neuralgia. My POTS is idiopathic (stands alone) so I will always have it. I was also diagnosed with Autonomic Neurotherapy, a sweating disorder and there’s nerve damage to my natural pacemaker to my heart which causes me to have a very irregular heartbeat. Other health issues are Neurotherapy, Myofascial Syndrome, cervical disc disease, fibromyalgia. My journey started for me 9 long years ago. I have lived with severe pain, dizziness, intensely severe headaches, constipation, extreme fatigue etc. My primary care physician was just baffled with everything. He told me my Heath issues was like trying to piece a puzzle together with the main piece missing. He would laugh and say I was mis-wired. But not once did he ever give up and I will always be grateful try o him for that. If not for him I still would not have a diagnosis! Life for me has dramatically changed from what I was, what I could do, and who I was. In May I had surgery where they put a port in. I have to have the liters of fluids every week for the rest of my life. My body will not stay hydrated no matter what I do! I take Midodrine twice a day which has tremendously helped me! I have not fainted since June 12th! A blessing that is! Every day is a constant struggle for me. I’m still trying to digest that this is my new life and nothing will ever be as it was. There are gone good days and bad days. Seems to be more bad than good! I never know from one day the o the next what my day will have in store for me and that’s scary!! I go days without sleeping at all to Sleeping days at a time. Some days the pain is so excruciating I can do nothing but cry. I’m trying not to let this get me down but it’s hard. I just live one day at a time and still learning what works best for me. I’m very thankful for my team of Doctors!
Jessica from Essex; Age 17
“My name is Jessica. I’m 17 and I’m from Essex and I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) on the 5th of August 2018. Though I have only been recently diagnosed I have been struggling with it my whole life! Since I can remember I have had hints of PoTS but it had never been an issue to me until last summer in 2017. I was on holiday and we were leaving for the airport to come home within a couple of ours. I suddenly came down with a really mad migraine which I hadn’t had for years. After a migraine every time I stood up I lost my vision and I felt extremely light-headed and that where my year journey in and out the hospital began. My day to day now is a lot of excruciating leg pain, headaches, stress, anxiety, nausea and above all FATIGUE. I go to college three times a week and I can barely do that. After college, I come home and I sleep, when I can as I have trouble sleeping too. It such a debilitating syndrome to live with although I try to look on the bright side sometimes the only bright side is that the sun came up. I strive to make everyone aware so we can find a cure! We deserve a cure”.
Katelynn from Kentucky; Age 20
“My name is Katelynn, and I am 20 years old from Kentucky. I was diagnosed in 7th grade and it took about 5 years I think. What happened was we were going to a therapist because I couldn’t for the life of me bring my eyes together when reading. I was a very slow learner. I also never got dizzy when spinning. The therapist found this strange and figured this had to do with my eye problems. She put me in a swing and would spin me around and get me to jump off, we’d make a game out of it. One day I had my first spell and I almost passed out, it was weird because I’ve never been dizzy before. In middle school, or it got really bad to where I had to drop out of school and start homeschooling”.
Dave Age 54
My name is Dave. I am 54. I broke my back and was paralyzed in 97 from a fall. I have returned to walking but have lots of nerve issues. Diabetes. I was dx in 2015 after years of gastroparesis and other stomach issues. I have been heating intolerant since the accident. in 2015 when the cognitive issues started and the falling from almost fainting. Three days in the hospital from not being able to stand finally had the TTT done as a last resort and there it was the dx of p.o.t.s
Cassie from Swindon; Age 28
“I’m Cassie, I’m 28 and live in Swindon. About 3 years ago I started getting very random bouts of chest pain and palpitations with no reason or cause. Twice I was admitted to hospital with a suspected pulmonary embolism. Each time nothing showed up on X-rays or CT scans.
My symptoms subsided as I became more sedentary due to a mentally abusing marriage so I only left the house for work or I would be accompanied to shops and friends houses b not allowed to drive or be active. I eventually got out of the relationship and started going to the gym. I would start getting dizzy spells but thought nothing of it and put it down dehydration and low salt levels. Finally found an amazing man and unfortunately had a miscarriage early 2017, trying to boost my energy levels we started training for tough mudder. After completing it, I was exhausted and fell asleep for the rest of the day, I honestly could no nothing for the rest of that weekend. I had 24hr EGCs, 7 day ECGs, Echos, blood tests, CT scans and all coming back clear I was told it’s more than likely anxiety. During this time I could barely stand without wanting to pass out. I would feel whole body palpitations whilst simply sitting on the sofa. Changes in heat, alcohol, eating a large meal, standing up, walking, and exercise. Any of these would cause extreme tiredness, chest pain, palpitations, headache, mind fog, and slurred speech or not being able to find the words I want to say. One day at work I arrived, tried setting up my room for the day and then lost my vision, became hot and clammy, pale and I could bearly breathe. I work in a GP surgery so went and got one of the other nurses who said I look forward terrible, and checked my pulse, it was 170, q GP came in and sent me to hospital. Once I was there and along down for a while a Dr s me ‘im, not an expert so I can’t really tell you this but look into PoTs’ I was discharged as all tests were clear and got on Google and came across PoTs.org. Here I found my answer, everything fitted. I was already signed off sick for work and My partner decided it would make financial sense to not wait for NHS for diagnosis, tests and eventually treatment and to go Private. I saw Dr and after a poor man’s tilt table and history taking he confirmed that I had Pots. I was started on Ivabradine in May and by June I was on 7.5mg twice daily and it was like a new me. Palpitations have stopped, dizziness has stopped, I’m back to work, I complete a fun run OCR events (obstacle course racing), I’ve even got on holiday to Cyprus and snorkeled with no symptoms. The only issue I still have is tiredness. I can normally manage one big task a day such as work, or a run or being the socialable bit if I try to do more than and overdo it I will just fall asleep with a very little warning. Saw Dr. again today and he is over the moon with my progress and is hoping to start lowering my dose of Ivabradine early next year to see if my symptoms come back or if they will stay away.”
Rebecca from New Hampshire; Age 26
“Rebecca 26,. It started memorial weekend at storyland with my toddler. I started to feel lightheaded in line and after about an hour I ended up laying down in the back of my car barely able to keep my eyes open. The next day I tried to drive home and ended up having to pull into a parking lot where I fainted twice waiting for my dad to come get me. I went to several doctors all that told me I’m fine it’s just a panic attack. I was given heavy meds that didn’t touch my problems. Each doctor that told me it was anxiety I argued with. I worked as a corrections officer for years, flew airplanes before I could drive, anxiety isn’t something I’ve ever had before. My body knows the fight it flight mood too well from working at the jail. Finally my PCP listened to me and sent me to a neurologist and cardiologist. After 4 months, 6 doctors and 8 rounds of testing I finally had my diagnosis. My work forced me out by saying I was lazy and making it up when it all started so since June I’ve been living off of savings. Cannot drive or go to stores alone. My current medication seems to help some but bad days I can hardly get out of bed. Decent days I do as much as I can. I’m a single mom and things still need to get done even if I’m not well. So I take the whole day to mow the yard or clean a room of the house. I’ve started applying for jobs that hopefully will be willing to work with me. I am working per diem maybe one shift a week at my old job as an emergency dispatcher but am unable to go back there full-time due to the rotating hours”.
Cindy from California; Age 56
“My name is Cindy, I am 56 years old, I have had symptoms all my life that I either didn’t know were symptoms (always been that way) or were attributed to other things. I have been heavy most of my life, so that was a go-to answer w/doctors and my family. . When I hit perimenopause at 41 (2004) all my symptoms got worse to the point I couldn’t work anymore. It took 3 years to get diagnosed (my dr read an article while at a med. conference – lol). Currently, I literally have about 35 days a year I can function – I just wish I could pick the days.
I currently have Kaiser insurance and have to fight for everything – been told: “Kaiser doesn’t DO Pots”.
I am on disability w/ Medicare and hoping to switch next year and get some help with the symptoms”.
Rachael from Callington; Age 18
my name is Rachael and I am 18 years old. I currently live in England. I grew up in Pataskala, Ohio, USA. I was first diagnosed when I was 16, however, it took close to 3 years for that diagnosis. I was a varsity soccer player and varsity weightlifting for my high school, as well as worked part-time (as an English tutor at OSU and as a referee) and attended Ohio State University through my school’s College Credit Plus (sometimes called PSEOP) studying Forensic Science. When I was 14, I collapsed while running, with no prior problems (I now know I DID, in fact, have problems but I always thought it was normal for aches and heart rate to be high etc).I saw multiple doctors through the local children’s hospital and was diagnosed with Rheumatoid Arthritis, anxiety disorder, PTSD (from personal issues around domestic violence), and depression. I was put on a flurry of medications, during this time having surgery on both knees and both ankles to try and quell non-existent arthritis. I was also still passing out regularly, bruising very easily, dizzy 24/7, and my legs gave out and were numb. All of this was put down to stress, and I ended up dropping out of school for a year. I was referred to the psychiatric unit at Cleveland Clinic when I was about 15.5/16 years old to get help because ‘I was stressed and it was all in my head’. It was there that my psychologist saw what was happening and I saw my first neuro. I had a tilt table within 2 weeks and passed with flying colors. I passed out almost immediately. They straightened out my medications, and I moved to England in the summer of 2016 due to personal issues. Since being in England, I’ve basically taken the diagnoses of POTS with me, and they began testing for other possible issues. I am now diagnosed with POTS, Chiari malformation 1, and, Scheuermann’s disease. I was able to handle myself and return to a normal school schedule and even got back to working very small part-time. I haven’t been able to do much exercise at all. However, I recently (about 2 weeks ago) suffered a stroke-like event, where I’ve completely lost function of my right leg. I also developed a severe stutter and dyspraxia. They don’t believe this is at all related to my other conditions, so I’m now pushing for more diagnoses! I hope to have a full spinal fusion and a pacemaker by Christmas this year to try and help, and just press on currently, I am looking to apply to university for entry for next year as the stroke made me have to give up a bit on this year, but I’m hopeful for next year!
Shelby from South East England; Age 21
“Shelby, 21, South East England. I was diagnosed in 2015 after going away on a residential and taking part in rock climbing and being ill after. Went to the doctor and he ordered ECG and then referred me to a cardiologist it only took a couple months to be diagnosed by blood pressure and 24-hour ECG monitoring. My everyday look like not being able to leave the bed or the sofa. Seizures and presyncope”.
Amanda from Michigan; Age 31
“I’m a 31-year-old mother of 3, after a lifetime of crazy symptoms I was finally diagnosed with Ehlers Danlos Syndrome at 28. At 30 an MRI showed I had Chiari Malformation, which explained my headaches, swallowing issues and vertigo. 6 months later I had brain surgery which helped tremendously with my headaches. Unfortunately, my dizzy spells got much worse. Within 9 months my neurologist diagnosed me with POTS. Most days my exhaustion gets the best of me and I spend the day in bed. Having a number of chronic illnesses have completely changed my life. I am unable to work and the majority of the time I need help looking after my children”.
Kelly from Connecticut; Age 30
“Kelly- 30 years old – Connecticut. I grew up as an athletic and outgoing girl. I did gymnastics, cheerleading, dance, and boxing. At the age of 18, I had decided to make a change and moved to FL to continue college where I started to get sick around age 19 and 6 months later was diagnosed with fibromyalgia. About 2 years later I started having dizzy spells, lightheadedness, and loss of appetite. My left leg swelled an inch bigger than my right, I had your blue walking and started passing out. I was placed on propanol and did better for about 6 Months and then continued to get worse. About a year in total later I was diagnosed with dysautonomia and POTS. It took me about 3 years to learn back the balance between what I can and can not do on a day to day basis. I now sometimes have to skip dancing or hiking due to flares. I have lost several jobs due to only be able to work remotely some days. I have started to build my own business in digital marketing so I no longer have to worry about the financial dips I’ve been having. It has been challenging coping with having POTS and has caused a lot of changes to my routine and lifestyle but I refuse to allow myself to become a victim. I hope to be able to travel and see the world”!
Dassi from Austrailia; Age 31
“My name is Dassi, 31 years of age and I am from Australia. I was diagnosed with POTS and NMH 2 months ago after almost a year of worsening symptoms. I’ve had a highly stressful year that has involved a campaign against my former abuser that has regularly made international headlines. Laat year, after a stressful 2 week campaign in Israel I began to experiance ongoing dizziness. I first visited my GP about this during November 2017. Part of my campign includes addressing large audiences for extended periods of time. As time went on giving speeches became more and more difficult, I feared collapsing, felt out of breath and like I was running a marathon just standing there. Again and again the doctorshesrd what I did and dismissed it as stress. I went through 3 hospital admissions with fainting, chest pains and tachycardia before a TTT was ordered in August this year and a diagnosis was confirmed. My day to day varies I am now on midodrine which helps with the low Blood pressure but some days it works better than others. On the days that I can get out I feel like I have my life back and can do as I used to. On the days I am bed bound due to low blood pressure and a heart rate that shoots up just from going to the bathroom I find it very depressing. I can no longer plan ahead bc I never know how I will be feeling in a few days time. Plans get cancelled, I can’t drive my child to school and it’s hard not to let the anxiety win. I’m getting better managing my symptoms but I’m also struggling to come to terms with the idea that life may have be as it was before”.
Alysha from New York; Age 22
“I was diagnosed in 2010 which would make me 13-14 at the time. My day to day has improved SOOO much though. Last winter I was stuck in a wheelchair again and I had exhausted every medical option that wasn’t extremely drastic. My doctors literally told me to hope I get better. I am totally a control freak, so I wasn’t just going to leave this up to chance. I tried holistic medicine like essential oils and Physical Therapy. Now I can work part-time as a nanny! So my typical day looks like: I wake up at 7am, eat a healthy breakfast and take my meds right away. Get ready and leave by 8am (I can even do low impact and modified yoga sometimes in the morning). Get to work at 8:30 and play with my little guy (15month). He thankfully isn’t super hyper so I am not too tired out usually. I am definitely careful to not do anything too strenuous. So we will sit on the floor for quite a while playing with toys, then we typically go outside for a little while. This can get difficult for me so I try and keep it short. He is at the age where he loves things like bikes and scooters, but needs to be pushed, which typically means I am leaning over to push him. Not great when you have POTS! So after we are outside for a little while, we will come back in and play until lunch. Then I feed him and put him down for a nap. After that, I usually do the dishes, then hang out on the couch and read a book for like an hour. Then I go home, eat lunch, and rest for a little. After I will do any of my housework that I need to do (I do still live with my family). I try to do short bursts of cleaning as that seems to help manage symptoms. After that I will do any of my planning for my volunteer classrooms that I teach at church and do my little essential oil business on the side. Then I will make dinner if I feel up to it and my Mom will come home from work. Then in the evening/night, we will watch a show or two on Netflix, and I without fail will always fall asleep during it because I am pretty tired I typically go to bed by 10 though”.
Ally from Michigan
“Hey, I’m Ally… I suffered from being light headed dizziness since I was a teen. I always had issues with a super high HR when I was standing and never knew why, but I didn’t experience syncope & I used to work out 2-4 hours a day. In 2012 I had a surgery, after that surgery I went from working out 5 hours the day before surgery to not being able to climb a flight of stairs and dealing with feeling presyncope all the time & episodes of syncope. I have tried to push through the feeling only to feel like I have the flu for weeks after. It took us 2 years of other treatments and testing to figure out that I was dealing with Dysautonomia. I was officially diagnosed via a TTT in June of 2014 at the age of 35 I have trialed multiple experimental medications and every traditional medication for Dysautonomia. Currently, I am IV-dependent to stay vertical. I do IV’s of hydration and other medications to manage symptoms as best as I can. My quality of life is looked at as very poor and we still can not get my HR to not go into tachycardia upon standing. I have been told this is something I will be living with for the rest of my life.
Leah from North Carolina; Age 29
“My name is Leah. I’m 29 years old and live in North Carolina. I have had symptoms my entire life but they were mild and not really bothersome. They didn’t get in the way of me doing things. Back in September 2017, I woke up one morning and felt terrible. I went to my doctor and was told it was a viral infection and was told to come back if I didn’t feel better in the next few days. I managed to work through the symptoms for another week but eventually went back to the doctor and said I was actually feeling worse. She did blood work and told me to go see a cardiologist. I made an appointment and was told I had NCS. I wasn’t put on medication but was referred to an Electrophysiologist. The EP saw me and immediately scheduled the tilt table test and stress test. I also had an EKG and CT scan done. Within a few minutes of being tilted up on the table, I passed out. I don’t remember much of what happened after that but do know I heard the doctors and nurses say POTS. At my follow up an appointment with the ep, he diagnosed me with dysautonomia and said I specifically have POTS. Since then, I have been on several different medications, have seen a neurologist, cardiologist, electrophysiologist, a specialist at MUSC, and am waiting on a referral to either the Mayo Clinic or Vanderbilt Autonomic Clinic. I’m able to work full time but it’s challenging and I end up taking a lot of days off due to my symptoms. I am still driving during the day but am not allowed to when it’s dark outside”.
(I would like to say thank you to all these amazing warriors, and beautiful people for sharing their story. These are only some out of thousands that suffer from dysautonomia daily. Help me by sharing this page, and telling others so we can fight to get a cure for this disorder)