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.
You can visit my other Dysautonomia posts by searching under the Dysautonomia tab on my sidebar. However, most people like to comment on Dysautonomia here.
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I love that you educate us on invisible diseases ghetto girl. I have Fibromyalgia and no one has ever told me it was a form of Dysautonomia.
Irene – No one told me, either, until I went to Mayo. I didn’t find that info on any of the websites I visited, which is why I wanted to write a post with some easy and quick facts to help spare people some time.
Gulf War Syndrome is a type of Dysautonomia? Wow, I never knew that.
Me neither until last year. The research on GWS really hasn’t been put out there, but I attended a seminar from the doctor who did all the research on it.
Hi GiGi. I admire the fact that you’re not allowing dysautonomia to control your life, that YOU are finding ways to live life the way you want in spite of it. Compared to you, what I have is minor, but the catch is since I don’t know my biological parents, I have no idea about my medical history. I hope though that whatever comes my way down the road health-wise, I’ll be able to handle it with as much strength & grace as you do.
Great post, GG. I had never even heard of this before I read your post. I have fibromyalgia which some doctors still do not recognize as a real condition.
I am going to mention dysautonomia to my new doctor. She is willing to research anything that she dosen’t know about.
Thanks for the info! As usual…you totally ROCK!
TPB – I was shocked to hear Mayo Clinic say that Fibromyalgia was Dysautonomia. How the frack can that condition not be a “Real disease.” I wish you lived in Michigan, because there is the best doctor (Dr. Claw/Clau @ U-M, I forget the spelling) who did 10 years worth of federally-funded research on Gulf War Syndrome and found it to be the same as Fibromyalgia. He is the doctor who goes around to other doctors telling them it is real, and presenting them with all the research. He worked to help create Lyrica. He doesn’t treat patients anymore, runs the Fatigue and Pain Clinic @ U-M and gives 8 students a 1/2 day workshop on how to deal with Fibromyalgia. Such a life saver for me – my binder is huge, otherwise I’d copy or scan it in and post it here.
Den – Thank you. I can’t say I always live without letting it control me, because at times it does and I succumb to it. I may have strength, but I’m not sure I have as much grace as you think, lol. And, even in my cause it could be much worse, as I know people who have worse things wrong with them, or I read about the other problems other bloggers go through and it boggles my mind. It just sucks that anyone has to suffer from illnesses.
I hope your biological parents were very healthy people, and I’ll keep my fingers crossed for you. Hey, everyone on my moms side of the family has died from every type of cancer, but neither one of us will probably get Cancer … I never worry about getting that disease.
I stumbled across your site while looking for info on POTS. I was diagnosed in October of 2009. My main symptom is dizziness and I find it such a struggle to do simple everyday things right now. It’s inspiring to read stories from other people who found ways to live a somewhat normal life while dealing with this. It gives me hope that it will get easier to deal with as time goes on.
Nikki – Sorry to hear you are dizzy, that was the one symptom I couldn’t handle. What are you currently taking or doing to help control it? My water, exercise and medication is working wonders, and I can live again, even if it is at a slower pace and less often than I’d like. Try it if you aren’t already doing it yourself.
this is awesome. I have EDS and vWD and Dermographism and Pots seems so close….
LOVE the tshirts….
Mary Beth – I don’t even know what vWD and Dermographism are, please tell me. I’m so sorry to hear you have all this. And, glad you enjoyed the post. You can buy all those shirts at Cafepress, under Dysautonomia, Fibromyalgia & Invisible Diseases.
Fascinating stuff. I’ve never heard of Dysautonomia before today and now I’m educated.
Tammy – I’m happy to have brought you a new medical condition!
Brilliant as per usual
I’ll link you up on my blog. And a big thanks for visiting DARE.
The more of us that talk about this the better Awareness will be.
Michelle – Oh, thank you! I think it’s cool you girls have banded together to do this. I’ll be back to visit again for sure.
My favorite posts are about your health. I absolutely love those t-shirts and wish I owned every one of them!
I like your book reviews too. Unfortunately, more so lately, I can’t seem to concentrate on anything for more than 2 minutes. You know, the reading the same page over and over and over……… lol
Pain In The Neck – Hi, haven’t seen you in awhile! I am so glad you love my health posts and thanks for letting me know. I write them for people just like us. I had been wanting a t-shirt like this for two years, and I am so happy I opted for the “Don’t Get on My Nerves” one, which was a little less offensive, lol. I also got a Jane Austen t-shirt, and the happiness I have from both of them – well, it’s just crazy.
I know what you mean about books. Sure, I read a ton, but I go a week or two all the time when I can’t touch a book. Maybe if you go somewhere quite or peaceful, say a park, etc … would that work? Helps with my pain.
I was still coming by to read, always enjoy your blog! I was in the hospital 4x’s after I lost my ins. Sept 1. I have my insurance back now so am somewhat back to normal (haha, whatever normal is).
Now I just got a letter that the disability council refused to review my case so, now sure where I’ll be or where I’m going.
I would pick the don’t get on my nerves shirt as a favorite too!
Pain in the neck – My goodness, I am glad to hear you are as back to normal as you can be. Sorry to hear you went through all of that, yikes! If I was a rich person I’d buy you that nerve shirt, because it sounds like you need it!
Your attitude and strength is amazing! You inspire us all!
Doraz – You inspire me with your amazing abilities to blog daily, reply to everyone there, and read all your blog friends new posts as often as you do. I wish I could be that on top of my blog and connect w/my blog friends! You rock, and thanks for always commenting here when it matters.
Have a creative day!
Doraz – Thanks, girl.
My 8yr old daughter has Dys and is sleeping in a hospital bed and has to get around in a cool wheelchair. She’s on 25 meds to get her through the day. She’s in constant pain but has pushed through with a smile and she’s inspired me. She’s my hero!! God bless u.
Angela Craft – I am so sorry to hear it. I certainly can walk, and can’t imagine what that must be like for her. What type of Dysautonomia does she have that it is so severe?
Have you taken any prescribed medication for your POTS? Why your Cardiologist think the Midodrine wil cause you a heart attack?
Jessy -I guess it is because he worries about my OH more than my POTS. My POTS is mild, my OH is more severe. As I have both, and according to the doc at Mayo, that form of two types of Dysautonomia doesn’t even exist, but it does for me, lol. It’s like I get hit with a rush of POTS and then a slowdown of OH everytime I move, and sometimes even when I am still and laying down. He said it would put me in Cardiac Arrest, and that scared me so much I take a mild form of stimulant so I get the best of both worlds. My blood pressure is raised just enough I’m not in a constant state of dizzyness, and not too much my body would go haywire and make me die. It works for me, for now.
Why we should avoid cold medicines and caffeine? You are taking Vyvance that is an amphetamine, that is a also an stimulant of the Central nervous system… Sorry for all the questions… I have Dysautonomia and I’m so confused with the treatment…
Jessy – I think because taking more than one stimulant at a time really puts you out of whack. For instance, I had three drinks in September, the night I lost my job. I couldn’t drink another drink to get drunk, my body wouldn’t let me, which sounds weird but you had to have been there. I was also wearing a heart monitor for a few weeks at the time, and it went off all night long while I was trying to sleep, forcing me to keep calling in my events. My heart was pounding like crazy, and felt like a fish was flopping in it. Since I normally have a very low blood pressure and heart rate when I lay down, it was a tiny bit scary. I think the same thing would happen if you take cold meds. And, guess what? My doctors love to forget that, so when they tried to prescribe me some last summer, I had to not take it because we couldn’t find one that worked for me.
Trust me Jessy, it is confusing. I forget things and go out of whack all the time. Happened to me Monday at my volunteer job and I had no idea what hit me, or why, been in bed for days since then.
Last week I went to a restaurant and ate a big meal and I also had only one drink. When I get home, I was dizzy and had a near syncope. I lay down inmediately and my husband gave me a Sprite Zero (to increase blood volume and increase salt in order to increase blood pressure). When I felt better, my husband took my blood pressure and it was 91/51. I suppose that the near syncope was due to low blood pressure or maybe the alcohol trigger that.
The mental fog (forgetting things) is due to low perfusion of blood (oxigen) to the brain, due to the low pressure. Try to lay down in order to improve the blood perfusion to the brain, to improve the cognitive area. (I learned all that in an episode of Mystery Diagnosis that I saw last week, where they discussed the disease “Swallow Syncope”. I read about that disease and is a form of dysautonomia also…).
Hope you feel better and thank you for your support!
Jessy -Oh, I’ve seen that Swallow Syncope episode, boy, was that ever crazy, huh? I lay down as often as possible, which I’m so blessed to have a laptop finally that can join me on the couch or in bed.
I also have a laptop, and I’m always on the couch to avoid feeling tired or dizzy. By the way, I love the tv program “Mystery diagnosis” because I know the feeling of knowing that something was wrong and every doctor thought that I was crazy!
What is your name?
Jessy – Good, you need to be lying down. And, yes, the best part of that show is when they find the right doctor, who is smart enough to come up with a diagnosis. Oh, I go by an alias on my blog, sorry. If you want to call me something other than TGFTG, you can call me GiGi, ok?
Oh, that’s fine GiGi..
Jessy – Cool.
Can you please recommend a dr or team I would go see at Mayo. I have been given the choices by my neuro, Mayo, Mount Sinai, or Columbia Pres. I love your article and the more research I do the more comfortable I feel knowing I’m not losing my mind….. It’s just on permanent vacation lol
Facebook:
Theresa Turcy Beacon,NY
Theresa – I saw Dr. Phillip Low at Mayo Clinic. But you can’t just make an appointment with him. You have to be refered to Mayo Clinic by your own medical doctor who has to fill out paperwork more than once, and you see a team of doctors assigned to you as Mayo sees fit, kind of like the show HOUSE.
I live on Puerto Rico (sorry for my english) and here on PR there are no specialists for Dysautonomia… GiGi, can you recommend a Doctor, beside Mayo Clinic? I think it is a little difficult all the paperwork to go to Mayo…
Jessy – Mayo has three locations, there is one that is more south than you. You could go to Vanderbuilt or Johns Hopkins as well.
Symptoms
Fatigue all the time
Dizziness
Numbness in arms, legs, face
Swelling redness and pn in legs, feet, arms, hands ( pooling )
Itching
Palapatations (heavy)
Exercise intolerance
Tachycardia
Tachypnea
Heat/cold intollerance temp usually 96*f
Aches/pains muscle/nerve pain burning and stabbing
Chest pain, tightness, L arm
Lower back pain
Speech problems
Tongue feels out of place ( too big )
Tension headaches
Loss if vision (usually one sided)
Lights perriferal vision
Memory problems severe
Trouble paying attention or concentrating
Over stimulated
Panicky for no reason
Nausea daily
Constipation
Diarrhea
Ibs
No menstural cycle since dec
Light sensitivity
Noise sensitivity
Weight gain…
These are the symptoms that I can rember for now. I keep them in a note book on my phone and add to them as I remember, because I can never remember all of them when I go to doctor appointments. It’s a horrible disease. I was hospitalized in nov before I knew what was wrong with me and was treated horrible and referred to psychology, only for them to tell me that I was indeed not crazy and that the lame ass doctors just didn’t know what was wrong with me. I’m fighting with my dissability company to pay me so that I can pay medical bills so that I can have doctors appointments. Today and last night have been horribe as I have been in constant pain. Not sure how to handle all of this. I’m only 25… Life is not supposed to be this way.
Maddie – I think I’ve had every single one of your issues. I’m so sorry you are dealing with insurance and money issues; it has been tough on me to lose my own job to what I (and many others at my workplace) felt was medical discrimination. I want to work, and now that I’m on the right medicine, and exercising my butt off (you can’t imagine how hard it was so do it, but I do it) and drinking my water, I feel much better. Honestly, there is hope that you can feel better. You aren’t crazy, and if you stay positive, I know you can get to a place where I’m at.
So I went and had my tilt table done. It was horrible. My hr got up to 180 had severe chest pn rapid breathing dizzy and almost passed out. my hr went back down then shot back up again and again. Would not stay steady. It would be 180 then shoot down to 76 then 120 then 134 then back down to 82 then 156 it was crazy the whole entire time it did this and the chest pain was horrible. Then the cardiologist comes in and says he didn’t see a problem because my bp that was 160/100 didn’t drop lower than 120/76, and I must be healthy cause I’m young. Can u believe this crap?! I’m just ready to accept the fact that they will not help me. I don’t know what else to do. My family doctor knows it’s dysautonomia but none of the specialists will acknowlege it. I feel horrible every single day, and noone cares!
Maddie: I have Dysautonomia too, but many doctors dont know anything about the condition. I had the tilt table test too, and my heart rate increased a lot, but because my blood pressure didnt drop, the conclusion was “a negative test”. I almost cry!!!! Then, I read on the internet that if your heart rate increases more than 30bpm, then you have POTS (Postural orthostatic tachicardia syndrome), which is one type of Dysautonomia. So, please search on the internet…
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
Hope this help you feel better, you are not alone!
Jessy – Nice of you to help out Maddie like that!
Maddie – It was good that you didn’t pass out! And, my first tilt table test, long before the one I took at Mayo Clinic, I saw a similar thing happen to me. Doctor thought it was no big deal, but the nurse present pulled me aside and told me to call my cardiologist asap, so I did. His nurse blew me off because she saw which doctor oversaw the test and never informed the doctor. When my local Neurologist diagnosed me here in MI four months later, my cardiologist didn’t believe it, made me go to Mayo because he fought over the diagnosis with the neurologist, literally. Neurologist’s office manager was crying to me and everything, which is why I left the care of both of them and see no one right now besides my regular doctor.
So, yes, I can totally believe your story! Have you went to a specialist that studies and writes research papers on Dysautonomia? Not every cardio of neruo doctor is a specialist in Dysautonomia. I feel you may need to. In the meantime, try my water and exercise regime, it really helps make me feel better.
Thanks so much for the replies. I have done so much research, it’s rediculous. I know I have pots possibly other things as well. My doctor knows it too but doesn’t know what to do with me. The cardiologist is an idiot! Do you know of any dysautonomia specialists in Michigan?
You can look this site for specialists in Dysautonomia.
http://www.dinet.org/physicians.htm#United%20States
Also, you can see the girl from the ghetto post above, where she said that there is Doctor in Michigan called Dr. Claw…
Jessy – Dr. Claw specializes in Fibromyalgia, and no longer treats patients, just runs workshops for sufferers once a month.
I don’t know if you’ll get notification on this or not. I hope you do. After 3 years of being diagnosed with systemic sarcoidosis and having no relief from my symptoms with all sorts of treatments, including steroids and chemo drugs, we went to Cleveland Clinic. While I was there, my sarc specialist took a look at my symptom list, sent me immediately to electro-cardiophysiology and had a Q-Sart and tilt table test done. There are docs at Cleveland Clinic, just a few hours drive from most of the mitten. I live in Grand Rapids and I am perfectly willing to drive the 5 hours (or well, have my husband drive me… *shrugs*) to get to specialists. And they have several at CC.
I also see a neuro-muscular specialist here in Grand Rapids. Dr. Gelinas is a world renowned neuromuscular speciliast and runs clinics weekly for fibro, cfs, ALSO, and dys. She’s at St. Mary’s in the Hausenstein Center. And Christopher Glisson, a neuro-opthamologist also at the Hausenstein Center at St. Marys. They are both amazing and have ordered more specialized testing than anyone else. Finally we’re getting answers.
I’m also fighting my my long term private disability insurance company because they won’t consider any symptoms of dysautonomia that can’t be quantified… so nausea, vomiting, dizziness, vertigo, itching, fainting, vision issues and parkinsonian symptoms like tremor, gait disturbance and frequent falls can’t be considered. Or won’t be considered. We’re pretty sure I have MSA, or Shy Drager Syndrome. The worst of the worst where Dys is concerned. But there’s not any definitive lab tests until after death when the brain stem can be biopsied. Yay me. I’m a lab tech by trade, so moving BLOOD from test tube to test tube is pretty difficult when #1 you can’t see, and #2 are shaking so bad you can’t get the pipette into the open end of the tube without spilling the blood all over yourself.
Whatevs. We’re making it work and I’m filing for SSI now.
Good luck. Dysautonomia sucks.
But depending on where you are, try to get a referral to Dr. Gelinas. And if she can’t see you or can’t see you soon enough, call Cleveland Clinic. They can get you in usually within a week of your call. And when you call, ask how to send your medical records ahead of you, and also tell them you are coming in from out of town and need to see everyone they will want you to see at once. They’ve been great every time I’ve gone. (my first appt with Dr. Gelinas took 6 months, but now I can get them whenever I need to see her. She has an amazing RN who handles her patients with a private phone number and calls back same day. Every time. I love Liz. She’s my person now. When my symptoms get out of control, I have someone to call instead of going to a very unhelpful ER who just wants to give me either steroids or dilaudid and send me on my way….My first appt with Dr. Glisson took nearly 9 months. But he was worth it. And so was she.)
Maddie – No specialists here in Michigan as far as I know. I live in Michigan, haven’t found one yet. But, I’ve been diagnosed with Dysautonomia by a Neurologist here who studdied at Johns Hopkins – email me and I’ll tell you his name and all about him.
I AM ALSO HAVING A HARD TIME FINDNG A DECENT DOCTOR HERE IN MICHIGAN. I am a patient at Univ of Michigan. Anyone can email me with suggestions: cassandradunn@yahoo.com. THank you.
Sandy – Sorry to hear it, but if it makes you feel any better, I don’t see anyone with great knowledge on the condition, either. I hope someone emails you with a good doctor.
Thanks Jessy
I love those t-shirts. I am the daughter and mother of 2 awesome people with pretty disabling symptoms. My 14 year old daughter’s diagnosis finally brought some closure to my mom. But along the way I almost lost custody of her when her dad accused me of Munchausen by Proxy (no stress there). Anyway you made her smile. Enough said. Muchos Gracias!
Anonymous – You can find them both on Cafepress, type in Dysautonomia. I’m sorry to hear your family has this … and I want to smash your ex in the face for what he accused you of and did to both of you. Man, people are dumb, and I’m glad you shared this story with us here. Always happy to make anyone smile.
Hi! my shoulder locked and it hurts like hell. Hope all is well!
R.J.
RJ – I’ve been tired like crazy the past few days … but it could be worse. Sorry to hear about that shoulder.
It’s me again. Anonymous – the mom of the 14 year old. Sorry to hear about the shoulder too. I have seen a little bit on the link between dysautonomia and joint hypermobility (or connective tissue dysfunction). This is part of the pattern in my family, too. Still I keep meaning to ask the docs more….
BTW- there is a facebook group starting up for dysautonomia – 21 members. Hopefully it gains momentum.
Wishing y’all peace.
Anonymous mom – I have had shoulder physcial therapy in the past -impinged shoulders, which I have no idea what that means, i just knew mine hurt like hell. Helps out having a king bed, I sleep with my arms stretched. There are a few Facebook POTS and Dysautonomia Facebook groups, you can check out my profile to find a link to them if you’d like.
Your blog is very informative and to the point. My daughter, now 12, was diagnsed with Dysautonomia/POTS at 18 months when she began having migraines. Over the years, as more and more research has been done we have identified many more ‘symptoms’ undr the umbrella. School is SO hard for her and the bullying is awful….they all think she is faking….
Anyway, just want to say thanks
from a Mom of a WONDERFULL Dyautonomic daughter.
Candace – I am so sorry your daughter is facing people who think she is faking. I wish I was 12 and it was 1983 so I could go beat them up for her! I think most of us have faced this, and it is one of the worst things about this condition. No one knows what the name even means, let alone now how to treat it, and for some we can die and face serious complications, yet we have no outword symptoms people can see. My husband recently had a dizzy spell for one second while driving and it rattled him. I told him to imagine that happening over 200-300 times a day, and then to think about what that would feel like over several years. It was a real eye-opener for him and he is on my side. I always like to say to people “Imagine your worst hangover lasting your entire life, then throw in X and X and X.” (I throw in a few other medical conditions, like my seven herniated disk pain, etc.) That’s how I feel all the time AND I don’t take pain meds! If I’m bitchy or short or forget stuff, that’s why!”
I’ve heard from a girl whose own mother thinks she is faking. For you to take the time to leave me your kind thoughts makes my heart happy and I hope your daughter can appreciate that YOU are on her side!
I finally ended up pulling my daughter out of school and am now homeschooling her. She is SOOOO much happier and I can work around her symptoms. But now with less stress her symptoms are better, too.
She is wickedly smart and she is now begining to realize that for herself. I know homeschooling isn’t and option for everyone, and I would have NEVER thought I’d actually do it, but in my daughters case it was the best move for her. And that is what it is all about anyway…..her success.
Your so cool!
RJ – I hope you are serious. If so, thank you, because I am a total nerd dressed in cool-girl’s clothing and appreciate hearing that!
Hey! I just wanted to say that I am so thankful that you posted this info here. I have “benign hypermobility” which I think has lead to this dysautonomia stuff. I’m 30 and ever since February of 2010 I seemed to have injured my neck in some way that I’m getting all of these bizarre symptoms (digestional issues, rapid heart beat, orthostatic hypotension, etc). Granted, I always had some form of the orthostatic hypotension as a kid but it was never this bad. All of the docs like to point their fingers at anxiety, which doesn’t make sense at all. I’m like the calmest gal ever! And, I’ll be doing the simplest things (like happily lying down to watch TV) when all of a sudden I’ll get some bizarre chest pain or something else crazy. I’m hoping that most of this all can be fixed with just some strengthening of my muscles in the right places! I’m going to get orthotics, in case that helps. I’m going to try yoga, in case that helps. I’m trying craniosacral therapy. Heck, I’ve tried and am going to try everything!
I’ve also read that with hypermobility disorders that it’s important to get enough protein and zinc and magnesium. So, even though my stomach is so bad that it has a hard time handling vitamins, I’m trying my best to eat lots of these things in my diet so that I get strong.
Again, thanks for posting all of this info! So, helpful, especially to “newbies” to this condition. Like I said, I haven’t been diagnosed yet, but I will not be surprised when and if I am. I’m going to see if I can see someone at Mayo as well.
Thanks!
Jeanie
Jeanie – It’s so nice to “meet” you and I’m happy to have helped you out. Going through similar symptoms such as yours, it’s confusing, even frightening at times, and I hope my post will help many more people like you!
Great post — entertaining and also informative!
I stumbled on here on a google wild goose chase looking for info after 4 hrs of autonomic testing yesterday. The results were all abnormal, and i wanted to know what it meant.
BTW, i got to wear a tyvek navy and white gingham pattern bikini for the sweat test. Posh, eh?
After being coated in that powder like a nice dry rub, all i could picture was an image of a rotisserie chicken dressed up like Gidget, roasting in a little oven…
Question for you: thoughts on dysautonomia as related to a paraneoplastic syndrome? I am waiting on results for neoplasm as well. I know of two people diagnosed with dyautonomia who had ( benign) thyroid cancer within 3 yrs.
Thanks again for great work and a fresh approach to the topic
LIJ- What can I say, other than welcome to the club! Hey, girl, you are lucky you had a bikini on–they had me baking in there naked with wash cloths on my privates. Nothing like purple barney paint coming out of EVERYWHHERE, right? LOL, I’m laghing because that was all I could do after my test–it was just so awful. It sucks you had to go through this!
I have (surprisingly) never heard of Paraneoplastic Syndrome, had to look it up. Ah, cancer–every relative on my mom’s side of the family died from every type of Cancer known to man. I never look into Cancer stuff ’cause I don’t want to scare myself. It makes sense–sure, I can believe it Want to hear something interesting? I have a thyroid tumor in my goitor (Gross, I know!). but hey, it’s still small.
Thank you & I really appreciate that you realize how hard I worked on this. We Dizzy Dysautoniacs gotta help one another out!
Hi, I just found your site and it is amazing. Yesterday, we were told that my 9yr old daughter, Jessica, has severe Hypermobility and Dysautonomia. She has had a huge list of problems since birth and now it is all making sense. He Neuro also informed me that she inherited it from me, as I have had similar issues since birth also, but my list of diagnosis’s just keep on growing, and what her neuro told us is making more and more sense. I guess now she will have to have more testing to find out what is causing her Hypermobility. Thanks for all the info and humor in your blog. I think humor is how I make each day.
Also, where did you get these shirts. I love them and would love to buy them. I actually had someone tell me, that I look great, since I lost some weight, so I must be feeling a lot better also. What a DA!!! Wish I had a shirt to address that one also.
Keely – Oh, thank you for the great compliments! I know how I felt when they told me “Dysautonomia” and how hard it was for me to find & connect with others at first.
You can find the shirt at http://www.cafepress.com under the term Dysautonomia or Fibromyalgia. I love wearing it, but sadly, no one has ever asked me about it in the real world!
A few things can cause Dysautonomia, on being Sjogren’s Syndrome, or a connective-tissue disease involving a loss of collagen. It’s go to a Rheumatologist if you haven’t been to one, yet. I’m so sorry your daughter is so young and going through all of this. I can’t imagine what it would be like to have this & have a child with it as well. Stay strong!
Oh my, I am so sorry dear. (All of you.)
I deeply respect all of you. I stumbled acoss this blog while doing some research fr my biology project. The internet keeps saying how “rare” this all is, yet here you all are, sharing life with one another and just trying to get through the days. To me, some of these sites try to pass it off as though this isn’t hurting anyone since it’s SO rare. I am so glad I found this blog to open my eyes. You all are an inspiration to me and all of you have got to be my personal heros.
Thank you!
Bri – Thank you for taking the time to leave us all a comment, and one that is so kind. That’s the rub of Dysautonomia-not much is known about it, and yet it affects many more people than we realize. There is little research and of all my doctors, not a one had heard of it before I taught them about it.
Good luck with your biology project!
I just found this post. It is amazing to know I am not alone. I found out I had dysautonomia last year. Mine affects my blood pressure. It goes from 218/118 to 90/48. Ended up in the ER 11 times from June of last year until December 23. Was in the hospital, saw Cardologists (2 different ones) Neologist and numerous ER doctors. They said I was having panic attacks. I told them I was not crazy, when you can see you heart beating through your clothes you know something is not right, when you pass out 5-10 times a day something is not right. Thanks to a dear friend of mine, whose daughter has dysautonomia, I have found the most amazing doctor, Dr. Phillip Watkins. She was in a wheelchair and had to use a walker (age 17). Now she is playing soccer and feels like a real person again. Dr Watkins is in Birmingham AL. In one week, I am truly beginning to feel a real person again. Not passing out, BP is beginning to get under control. NOT FREEZING TO DEATH! Even beginning to sleep a little better. He specializes in Dysautonomia. I know it may be a long way to go, but it is definately worth it. My husband thought I was crazy since I live 20 minutes from Vanderbilt. A week after our visit, I asked him what he thought, He said, ” I feel like I am finely getting my wife back.” His website is http://www.mvprolapse.com. I wish you all the very best and will definately keep each of you in my prayers!!
JK-I can’t believe your heart rate goes that high!I can’t even fathom what a heart that beats that fast feels like.
I love it how someone thought passing out 5-10 times a day passed for “panic attacks.” What an idiot–but at least you are getting treatment and feeling better. Good for you.
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Hi
Just got diagnosed with dysautonomia please email for updates
Do you have very bad days? Especially when the barometric pressure swings? I do bad. I get insomnia so bad even sleeping meds wont help and it wears my body down. I get frustrated and get disconnected from the world sometimes. My doctors don’t know much about the disease…Mayo clinic requires a 5000 dollar deposit and I feel I am not getting the proper treatment I need where I live. If I was 16 and had a kid I’d get health insurance though. So so sooo frustrating!!! How do you get yourself up out of bad days!! I have so much trouble coping with bad days..and it seems like when you have one bad day theres at least 5 bad days to follow it! Has anybody done the myofascial release therapy? I just started it this past week. It feels amazing when it gets done.. also Kinesio tape around the joints help to make that part of the body stop working so hard!!!
Ashley- I have bad days, like today, but I’ve never paid attention to the pressure outside.
What do you mean Mayo requires a $5,000 deposit? Do you mean for people who don’t have insurance? Because I went there with insurance and just had to pay my doctor co-payments.
This is R.J.! How Are things going? Good I hope!
RJ – OK, not great, not horrible, just OK.
I love your spunk and humor. Its great. After years of crazy symptoms finally came upon the diagnosis of dystaunomia and broughtit to my Cardiologist attention as article said and for sure the light bulb went off, referred to electrophysiologist Cardio and was diagnosed with inappropriate Sinus Tachcardia. Now all the symptoms are fitting into the puzzel, the Elect. Cardio also thought something else might be going on but that has yet to be determined. Oh well. Better late than never. Looking back had years of symptoms but was looked at as “anxiety” uugghh I always knew the difference and this was NOT ANXIETY. Especially the fatigue and increased heart rate with exertion uugghh. I have taught group fitness classes for years and there were times I had to stop for HR would be out of wack, went to doctors found nothing and things cleared up, time and time again. In 2003 got so ill just getting out of bed was a nightmare not to include the rest of the digestive symptoms, IBS, gas, nausea and many more symptoms. Was told to go to a Psychiatris uuggh. Than finally diagnosed with Undifferiented Connected Tissue Disorder. Still don’t know if I have that too. Oh well, The first Cardio changed my BP meds and symptoms have been better but its only a month. Thanks for your input its great to have friends who understand. Love your Tee shirts can I purchase the first one? Thanks Donna
Hi!
I love the shirts! I have “Potsie Girl” “Dizzy Zone” and “Got Pots?” and am dying to know where you got yours!?!
It does make me feel better to try to bring awareness to this crazy disease through clothing
10 years diagnosed, but much longer searching. Love your info. But love the shirts more! Please, I want to buy one or get permission to make one! Helps on all the days where you have to go to “Plan B” to have a sense of humor.
Brooke – Those shirts aren’t mine–I found them by doing a search for “Dysautomonia” on Cafepress.com. I love them too, and own a shirt that saying, “Don’t get on my nerves, they have enough of their own problems.” I wear it all the time!
Hi GG! First let me say THANK YOU for sharing this information and your personal struggles. I know it is very hard to live with this. I am a mother of a 17 yr old who has been diagnosed with this effed up disorder back in May 2011. She struggles everyday with different symptoms and just cannot understand why! Yes there are days I want to cry all day long and have a big ol pity party, but I will not let this disorder win! I encourage my daughter everyday and I have great friends who do the same for me. I pray for everyone of you who have to deal with this and please find great support groups, I can see that this is awesome place to start! Good luck to all of you and please continue to post so we can all help each other. I am new to this and I need all the help and advice I can get. I hope my daughter can be as strong as you GG, to be able to share her story one day, for now it is too shocking, confusing and embarrassing for her. God bless you all!
Vero – I am very sorry to hear your teenager has it. My doctor thought I had it as a teen, too, as I was always fainting or nearly fainting as a teenager. I just thought that was normal, since we only cooled down our house with 1 fan. I think the best advice I can offer any young person is to live life, and don’t dwell on it, and DRINK WATER!
So happy to have helped you out in this small way.
Hi there. All I can say is WOW. My daughter is almost 22 and has been dealing with more aches and pains in the past 5 years…she was recently diagnosed with fibromyalgia and is a mess when forgetting to take her medication (Lyrica and tramodol). When reading the symptoms of Dysautomonia my daughter has probably had 75% (if not more) at some point or another. When she was little she was diagnosed with attention deficit disorder BUT prior to this the doctors said she had a “nerve dissorder.” I had to take her to occupational therapy twice weekly where they would rough house her and rub her down “trying to desensitize her nerves.” Thinking back it is my belief all this ties into one another but she was not as verbal with her symptoms because she was young. Along with the various symptoms her mood flucuates like turning a light switch on and off. And yes, her boyfriend (and friends) don’t understand because “10 minutes ago she was happy and laughing” BUT now a symptom reared its ugly head. As a mother watching my daughter go through this it is terrible and I am determined to help find the answer. Especially when my daughter says “I feel like an 80 year old in a 21 year old body.” Something is not right.
I was diaginosed (SP) about 7 years ago with Neurocardic Sysope. Started having blackout spells 2 weeks before I turned 40 so I thought that it was something having to do with getting old. Boy was I wrong. It took 2 tilt table tests to find it. That was after an implant and having to wear a heart monitor. After I was diagnosed they put in a pacemaker and prescribed medication. Within a year of that I was diagonsed with Meniere’s disease (SP), then migraines and finally fibromyalgia. It is everything I can do just to make myself get up and go to work. I know that if I just lay in the bed it will make things worse. It seems like everyday there is something new…
Anne – Do you feel any better with the pacemaker? I’m terrified to ever get that done.
I am sorry you have all of these issues, but I LOVE that you get out of bed and know how bad it will be if you just stop moving. Stay strong!
Hi all
I am waiting for my nuro and primary dr to send paper work to Mayo for testing and possible diagnosis. 6 years in pain.
I know I can’t be the only guy with Dysautonomia But to everyone, thank you for the posts. Now I know I am not alone
Since I have gotten the pacemaker I haven’t had the blackout spells like before. So between it and the meds they have helped. The only thing is that all this other stuff has started happening. This is something that my cardiologist told me might happen. The other thing is I hate having to be on a high salt diet (4000-5000 mg a day). I find it hard sometimes to get that much. I am just trying to get a better understanding of it and not sure where I can get more information. Your site has helped a lot in giving me a better understanding of some things. I am just trying to find a Dr. that knows more about this then the one Ihave now.
I just found your blog and doing research into my own condition(s) – POTS, OI, possible GWS. could you help with resources so I can share with my pcp. he goes a LONG way to help me. Learned some more info that I did not know. Thanks for sharing.
Hi, Its so helpful to know we are not alone. You write a lovely newsletter and it covers many issues. First let me thank you for that. I deal with many issues you write about. I too was made to feel like I was “crazy” with all the different symptoms, I never once would accept the “anxiety” diagnosis as the reason for my crazy symptoms. It just did not make sense. Especially when I would exert and my HR would sky rocket and stay high, my stomach built up gas and crazy mad burping would occur. Well hay uh sorry this is NOT ANXIETY. LOL Anyway, I did finally diagnosis myself and confirm it with three doctors March 2nd, 2011. 1 Cardiologist and 2 electrophyologists. I also have dysautonomia but was not “officially” diagnosed. Its just scary now what im getting older (55) what my symptoms will lead too. I have taught group fitness classes for years but gave it up in 2003 when I was real ill. I have since been doing much better especially since the diagnosis and change of bp meds to calcium channel blocker but still get symptoms. Looking back I have had symptoms from my early 20′s. Oh forgot to mention, They did diagnosis me with UCTD in 2003 but not sure if that is still my diagnosis cause dysautonomia and IST fit perfectly. lol. But again, just scared as I grow older even though most days I can work out for an hour. Thanks for listening and reading. Donna
Thank YOU Donna for sharing your story. I really appreciate you taking the time to describe your struggle!
Thanks for writing this blog – I was finally diagnosed with Dysautonomia – hypermobile joints – After having a pacemaker implanted 10 years ago for severe bradycardia and one of the usual meds working well enough to make an improvement in my functioning. My pacemaker had to be set at 95 bpm to get enough blood to my head to minimize syncope eposodes. Fast forward 4 years – I thought it was the flu and finally after several weeks went to the ER in excuriating pain – I was in Conjestive Heart Failure and the pain was caused by a conjested liver. I had to come off all my meds and have my pacemaker dialed down – and for the 2 years it took to recover reasonable heart function the syncope episodes started (5+ / week), the OI got worse, lost heart rate variabiity, waited 2 months to get in to see a specialist all the while dragging myself to work everyday. I don’t know how I functioned at all but after seeing the specialist and the QSART showed the low parasympathetic and sympathetic function seen in someone still walking around – I waited another 2 months for my firm to approve my FMLA – and was barely functioning most days – it was a mitacle that I showed up somedays – I tried a reduced schedule for about 9 months and last spring I just couldn’t go on – couldnt sleep, eat, read, I just dropped out of my life …. I went on short-term disability / FMLA – my disability ran out last week and FMLA will give me another 12 weeks but my docs are telling me that I have finally gotten to the point where I am sleeping, my pain is being managed fairly well, and with mododrine and adding licorice plus 4-5 liters of fluids and 4-5 grams of sodium – now it will take about 18 months to get back to a reasonable baseline and maybe part-time work. I just realized today as i was walking into my building through people hanging out – standing and talking (i can’t stand for more than a few minutes) I felt like I was walking through the world of the people living life while struggling after a couple hours of running errands to make it upstairs to stretch out ln my couch for a bit.
This disease stinks in so many ways – doctors don’t know about it; my friends thought I was depressed or making it up; and I am afraid of what will happen to me – 18 more months of building up enough reserves to not have my heart just stop – I just want a life. I need to figure out what I can do to feel as though I have something to contribute – to feel I have a purposeful life.
Thanks for the forum and if anyone has suggestions – I am all ears.
Hello and thank-you for your insightful blog. I was diagnosed with CFS a year ago but have been very sick for 4 1/2 years. One of which was spent almost entirely in bed. I’m housebound now and experience severe deathlike fatigue. It literally feels like I’m dying yet I can’t fall asleep (unless with pills). I found out about dysautonomia through searching the web though a psychiatrist mentioned it to me before. He also said that he thinks CFS which present itself much like PTSD, both forms of dysautonomia. He mentioned this to me, but didn’t direct me down the right path, hopefully I can get there. I have severe tachycardia that came and never left after a period of severe stress, it’s constant, until I crash. I had a sleep study done because it never NEVER feels like I’ve slept and my heart rate was extremely high while asleep. Recently a doctor suggested I see a cardiologist, this is after 4 years of severe tachycardia which has caused severe anxiety and ocd, both of which I never had before. I get the headaches too, although fatigue is my main issue and has completely disabled me, it literally feels like I’m dying. With all that said, do you typically go and see a cardiologist or a neurologist for initial diagnosis? Thanks for this post.
Hi. I’ve just been diagnosed with PAF. I was wondering how do you deal with the cold? I live in Chicago and have been trapped in my apartment for a month.
Thanks, Liz
Liz – I have a very hard time with the cold–I sleetp with 4 down (well, 3 down-alternative blankets & 1 real one) blankets and try not to go outside when it is cold.
I had a breast augmentation four months ago and have had serious neurological symptoms that come and go since that time. My general doc just sent me an article on dysautonomia and thinks that is what I have. Would you remove implants because of the chemical/toxin exposure? Have you heard of people getting better as a result? I had NONE of these symptoms beforehand –but wonder if it’s the SURGERY that did it or the toxins in the implants!
JWiersm – I don’t know anything about breast implants, except that an old friend’s mother believed she got Lupus after getting her implants.
I had a hysterectomy a few years ago and my body went through hell during and after the surgery, because of the Dysautonomia. I wish that I never had the surgery, if that helps you.
I’ve read that surgery and Dysautonomia don’t mix, so I am not sure in your case if it was the surgery, or the implants, or even both factors combined that gave you the symptoms. Perhaps you can do an internet search for breast implants and Dysautonomia? I’m sorry you have to deal with that.
Would love to know your thoughts ASAP! Jwiersm
Is your FD gentic? I have know since I was a teen that my body just wasn’t put together right. I had so many dreams an aspirations but never enough energy to complete them all. I went to school and completed my nursing degree. I have married and have three boys. I work now as a full time nurse and raise the boys. I try to live life to the fullest It’s not nice to hear others who suffer as I do, but it is good to hear others sharing their stories. Because somedays you feel like you are losing your mind. I know doctors don’t understand. Because on the out side you appear normal. So thanks to all who share their stories and words of wisdom.
Lisa – Not sure, Mayo wanted to send me to a specialty hospital for further testing. It might be, as genetic conditions affect some members of my family.