I’m no medical expert, but I’ve certainly been diagnosed twice by one, which is perhaps why many people have continued to email me or comment under my other Dsyautonomia posts asking for my help and advice. I realized that I should help them by writing a detailed, yet easy Dsyautonomia post to quickly educate them.
When I was diagnosed with Dysautonomia in 2009, I spent weeks gathering information educate myself. I was completely overwhelmed by the lack of easy information and resources out there. For instance, my public library, one of the best in the state, only had one book that had two small chapters on my condition, and there were only a few medical books in the entire state of Michigan I could borrow and read about the condition. Once I got the book, it took another book to help decipher it. No one I knew had heard of my condition, not even my former primary care physician, who eventually remembered “after a few days” hearing about it in med school. Luckily for me, I’m a hell of a researcher, and I pulled together a lot of information myself. I read a textbook by one of the few men doing research in the US on Dysautonomia, and as luck would have it, I was also diagnosed at Mayo Clinic by the same man – one of America’s leading experts on Dysautonomia – Dr. Philip Low. So, between his research, handouts, and my own internet research, I’m fairly certain what I share with you is fairly good information and advice. Trust me, if you have just been diagnosed with Dysautonomia, I know how hard your life has been for the past few years just trying to get diagnosed. I know what you faced and encountered along the way. You could use a cheat sheet on the condition, and I’m happy to give you mine, which I plan on updating from time to time.
I just got this t-shirt, isn’t it great? I can’t wait to wear it tomorrow when I work out and run errands.
What is Dysautonomia:
First of all, you may be asking yourself, what the heck is Dsyautonomia? I’m not going to get into the specifics of it, simply put, Dysautonomia is a malfunctioning of the Autonomic Nervous System, or the unconscious bodily functions - your heart rate, digestion, breathing, blood pressure, pulse, body temperature, sweating, bowel function and sleep patterns. Dsyautonomia can also be refered to as Autonomic Neuropathy. Think of it this way – Dysautonomia can interrupt the inner workings of the human body. So, just like a driver of a faulty Toyota Camry, we are not in control and we are at the mercy of our vehicles.
Brief History of Dysautonomia:
Back in the old days, it was known by another name, Neurasthenia, and basically, the condition forced sufferers to be bedridden, and occasionally die because of their weak nervous systems. This is why “fainting couches” were created in the first place.
What causes Dysautonomia:
Marfan Syndrome
Ehlers-Danlos Syndrome (EDS)
Collagen Imperfecta
Shy-Drager Syndrome
Genetics, as in the case of the Jewish-based Familial Dysautonomia
Pregnancy
Autoimmune Diseases
Parkinson’s Disease
Brain Injury
Physical Trauma
Deconditioning
Viral Illnesses
Chemical/Toxin Exposures
Breast implant surgery
Extreme Stress
*Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset.
Types of Dysautonomia:
There are several types of Dysautonomia, and I am blessed to have more than one form, which I’ve highlighted for you in bold.
Familial Dysautonomia (FD) – The rarest and most deadly of the disease.
Postural Orthostatic Tachycardia Syndrome (POTS)
Orthostatic Intolerance (OI)
Pure Autonomic Failure (PAF) [also known as Bradbury-Eggleston Syndrome or Orthostatic Hypotension (OH)]
Mitral Valve Prolapse (MVP)
Vasovagal or Neurocardiogenic Syncope (NCS) (I have near-Syncopy, as I rarely pass out.)
Multiple Systems Atrophy (MSA)
Gulf War Syndrome
Fibromyalgia
Chronic Fatigue Syndrome (CFS)
Panic Attacks
Anxiety
Inappropriate Sinus Tachycardia (IST)
Irritable Bowel Syndrome (IBS)
Symptoms of Dysautonomia:
Light-Headedness
Dizziness
Vertigo
Syncope/Fainting
Blurred Vision
Numbness/Tingling
Depression
Headaches
Migraines
Myofascial Pain
Malaise
Salt Cravings
Pallor
Facial Flushing
Nerve Pain
Trouble Breathing
Increased Emotions
Urinary Problems
Sexual Difficulties
High or low blood pressure
High or low pulse (I’ve seen mine as low as 42, but I’m normally at 60.)
Body temperature regulation
Sweating Abnormalities
Difficulty Digesting Food
Bloating
Constipation
Diarrhea
Nausea
Acid Reflux
Chest Pain
Seizures
Lack of Low Blood Sugar/Hypoglycemia Warning Signs
Sleep pattern problems
Vision problems
Sluggish Pupil Reaction – Difficult to drive at night.
Exercise Intolerance
Aches and Pains
Non-mentally induced anxiety and panic
Brain Fog/Mental Confusion
Chills
Intolerance to heat or cold
Noise Sensitivity
Light Sensitivity
Low Back Pain
Weight Gain/Loss
Detachment from Surroundings
Easily over-stimulated
Tests/Diagnosis:
Tilt-Table Test
Electromyography (EMG) (Hurts like hell, don’t let them trick you and tell you it feels like a pinch)
Quantitative Sudomotor Axon Reflex Test (QSART)
Breathing Tests
Gastrointestinal Tests
Thermoregulatory Sweat Test (My favorite test of all – you go into a sweat tent, naked, get painted with gold powder like the Bond Girl, and they take picture of you (Certain parts are covered with a wash cloth) and you come out an eternity later looking like a fat, sweaty Barney because you’ve turned purple. I had to drink hot liquids before the test, and 104 minutes later, they had raised my temperature to only 100.4 or something near that. When you have a heart intolerance this is actually tortuous. Plus I had purple coming out of everywhere for two days.
Standard Medical Treatment:
Midodrine – My Neurologist prescribed this, but my Cardiologist didn’t want me to take it, as he feared it would give me a heart attack, so I’ve never tried it. It is the drug of choice.
Fludrocortison
Somatostatin
Erythropoietin
Cheap Treatment:
If you are like me, a patient with Pure Autonomic Failure (PAF/OH), you can treat your symptoms on the cheap: I have used all of the following, and I barely feel dizzy, unless I walk up or down stairs.
Compression stockings
Drinking water – I sip water constantly to increase my blood pressure.
Vyvanse – Raises blood pressure and helps with the brain fog.
Exercise – The more you do it, the better your body feels. I wish the same were true for my headaches.
Eating salt – I prefer real bacon bits on my whole wheat English Muffins.
Additional Treatment:
Physical therapy
Yoga
Tai-Chi
Massage therapy
Various anti-anxiety pills and antidepressants
What to avoid when you have Dysautonomia:
Over the counter sinus and cold medications
Caffeine
Chocolate (yeah, right)
Stress (yeah, right)
Anything that drops blood volume - becoming anemic, sudden blood loss, donating blood
Prolonged Surgeries
Certain types of Anesthesia
Alcohol
Why do I personally have Dysautonomia?
I have a rare genetic connective tissue disorder that involves a loss of collagen according to the doctors at Mayo Clinic. There is no cure for my genetic collagen disease and my doctors can only treat my symptoms. Since all of my tissues are weak, I have all sorts of problems that at times can be way worse than my Dysautonomia symptoms. My eyes suck. My joint are out of whack and I once injured my neck in my 20s just laughing really hard while shaking my head. I already have lost two inches of height in ten years due to this loss of collagen in my body as it has caused Degenerative Joint Disease. As of 2008, seven of my disks were torn, herniated, or bulged. I have regurgitation in two of my four heart valves, but thankfully only have PAC’s currently. Mayo also diagnosed me with a bleeding disorder but I haven’t seen a specialist for it, nor do I care to. I’m not supposed to have surgeries at all, as my surgical scars stretch thin over time, and I’ve had the one on my leg burst open once. I’m hoping the 11 staples my gyno put in last summer to remove my uterus (that had split in half and had fallen deep into my pelvic bone) will hold the cut across my abdomen down the road. Don’t even get me started on my teeth, because I can’t even “go there” right now. And, for an interesting side note, one of the connective tissue diseases that causes Dysautonomia is so bad that they actually abort 85% of all babies who are found to have it. My own father is legally blind, and both of his parents died blind. My dad and his father also had torn heart valves and had their heart valves replaced in their early 50’s. My mother is partially deaf and (is supposed to) wear hearing aids in both her ears. She has similar spine problems as I do, but does not go to the doctor since she is still living in the ghetto, poor, and unemployed. Her teeth are crumbling out of her mouth, she is balding horribly, and will literally have a heart attacks if either one of those things happens to me one day. Still, despite all this crap, I still manage to exercise, and volunteer. I was working full-time until I lost my job six months ago due to the economy. I find that “mind over matter” is the thing that helps me the most. I tell myself shut up, get moving, too bad, whatever it takes to live my life as best as I can. I may be exhausted and in pain, but I’m still out there, trying to live life, because I’m not letting this stupid conditions get the best of me. My best advise is - Do not let it get the best of you.
Share your story:
I would love to hear your story, please introduce yourself and tell us your story, what helps, and what hasn’t so far. Feel free to come here and vent, rant, scream, whatever. We all have been there, and we understand to a great degree what you have been through … because we have been through it as well. Nothing made me happier than getting hundreds of emails over the past year from people who told me they felt crazy or were suspected of being crazy because of all they had been through with Dysautonomia. You are never alone here!
A final word from The Girl from the Ghetto:
Please feel free to link to this post if you suffer from (Or just want to write about) Dysautonomia if you are a blogger, or Twitter or Facebook user. I am very happy to help anyone, because I know how badly it sucks to almost always feel AWFUL. I spent hours writing this post and I do not want to see my post show up in full or in pieces on your own blog, especially those blogs run for money or utilizing ads. I find that form of plagiarism highly offensive, especially when it comes to health-related topics. Also, please do not spam comment here and insert links to your vitamin websites or for any type of cardiac ablation procedures. Save us both energy and time, because neither of these are proven to help, so I won’t be approving your comments.
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