Just Mildly Medicated’s FAQ about Dysautonomia

April 22nd, 2013 by Carrie, the Just Mildly Medicated gal

Just Mildly Medicated’s FAQ about Dysautonomia

I think I might have that crazy Dysautonomia thing that you keep talking about, so what now?


After starting this blog about my personal journey through life as a Dysautonomia chick I have been asked many questions about Dysautonomia. I wanted to try and put the FAQs in one place, and here you have it. I will add to it and repost it as questions come up. If nothing else Chronic Illness is a learning process.

**I am not a Doctor, Lawyer, Baker, or even a Candlestick Maker. These are answers from my personal experience with my type of Dysautonomia, speaking with my doctors, as well as from reputable sources which are linked back so you may read more from them if you would like.**

Q. What is Dysautonomia?

Dysautonomia International defines Dysautonomia as an umbrella term used to describe various conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye and temperature control.

Q. What are the symptoms of Dysautonomia?

A. There are a wide variety of symptoms of Dysautonomia. Dysautonomia is a large umbrella term for dysfunction of the Autonomic Nervous System. The following link is from a post on Just Mildly Medicated that was a tongue and cheek jab at life with the symptoms of Dysautonomia and the side effects of the medications. You can also find a list of symptoms on Dysautonomia Information Network here.

Dizziness, Tachycardia, Bradycardia, Exercise intolerance, Clamminess, Anxiety, Flushing, Postprandial hypotension, Blood pooling in limbs, Intolerance to heat, Feeling cold all over, Low blood pressure upon standing, Cognitive impairment (may include difficulties with concentration, brain fog, memory and/or word recall), Narrowing of upright pulse pressure, Hypovolemia, High blood pressure, Hyperventilation, Numbness or tingling sensations, Reduced pulse pressure upon standing, Low back pain,Aching neck and shoulders , Noise sensitivity, Light Sensitivity, Disequilibrium, Disabling Fatigue, Sleep disorders, Headache/migraine, Myofascial pain, Neuropathic pain, Bloating after meals, Nausea, Vomiting, Abdominal pain, Diarrhea, Constipation, Bladder dysfunction, Pupillary dysfunction , Blurred Vision, Tunnel vision, Arrhythmia, Chemical sensitivities, Easily over-stimulated, Food allergies/sensitivities, Irregular menstrual cycles, Loss of appetite, Loss of sex drive,Muscle aches and/or joint pains, and Swollen nodules/lymph nodes, Polydipsia (excessive thirst)

 

Q. Do I just tell my doctor I think I have Dysautonomia?

A. In short yes. Let them know why you think you may have Dysautonomia, be sure to write down the symptoms you experience so you don’t draw a blank when you get there.

When you go to the doctor they take your vitals one time while sitting down, people with Dysautonomia usually have abnormal swings in blood pressure and/or heart rate after standing for a few minutes (Orthostatic Intolerance). If your doctor doesn’t offer to do this on his or her own you may want to suggest it.

I personally recommend doing your own Poor Man Tilt Table Test several different times over a few days and keep track of the numbers to bring in with you.

 

Q. What is a Poor Man Tilt Table Test and how can I do it?

A. The Poor Man TTT is an easy way to see if your BP and HR have a normal reaction to standing. I bought my blood pressure and heart rate wrist cuff at Wal-Mart for around $40. I do it the same way it was done in my Neurologist’s office. Lie down for about 3 to 5 minutes and take BP (I take a photo of my results with my cell phone). Then stand in a relaxed way and take it again at 3, 5, and 10 minutes.

You are looking for a change in blood pressure, usually a drop but possibly a rise, of  20/10 from your resting blood pressure or a jump in heart rate of 30 beats per minute or over.

Downside to poor man Tilt Table Test are that you are weight bearing when standing up and have a range of motion to monitor your BP and HR. The results will not be exactly the same as a TTT at a medical facility.

You may find that you are not a well trained monkey and your body will have a range of abnormal responses that don’t follow a pattern. This will still be helpful information for your physician to decide on what tests he or she may be interested in having done.

here is my own BP drop of 21/10 after 5 minutes after standing

 

here is my own HR increase of 31 after 3 minutes after standing

 

Q. How is Dysautonomia diagnosed?

A Tilt Table Test is the most common test done for diagnosing Dysautonomia. You will lie down on a secured table and have vitals taken over a period of time. You are then raised at an upright angle but non-weight bearing and they continue to monitor your HR and BP, usually for 45 minutes.

Other tests you may be asked to do are ECG, EEG, and wearing a Holter Monitor. Less common tests, usually done at facilities such as the Mayo Clinic, are Quantitative Sudomotor Autonomic Reflex Testing (QSART) and Thermoregulatory Sweat Test. I wrote about these tests after talking to my Neurologist.

 
Q. What type of doctor treats Dysautonomia?

A. Best case scenario you will end up with a team. Your Primary Care Physician usually starts you off with a referral to cardiology as well as neurology.  Depending on your symptoms your team my include specialists like an Allergist, Neurologist, Gastroenterologist, and an EP Cardiologist.  As for who will end up handling most of you treatment for Dysautonomia that will depend more on the doctor you feel most comfortable with and less on the type of doctor they are.
 
Q. Are there Dysautonomia Specialists? 
A. Though few and far between there are doctors and facilities that specialize in treating Dysautonomia. Here a few in the US I know of.
POTS Treatment Center in Dallas, Texas
Vanderbilt Autonomic Dysfunction Center in Nashville, Tennessee
Dr. Grubb in Toledo, Ohio
Dr. Randy Thompson in Pensacola, FloridaYou can find a list of doctors who are familiar and have experience treating Dysautonomia on the Dysautonomia Information Network website.

 

Q. What specialists do you see? 

A. As of now I have an EP Cardiologist, Neurologist, Gastroenterologist, and Dr. Thompson is my Dysautonomia Specialist.

 

Q. What can I expect as far as treatment? 

A. Some popular non pharmaceutical treatment options are compression wear, my personal favorite compression wear is Juzo. Salt loading is very important with Dysautonomia, I wrote about salt loading and what exactly it means here. Drinking enough water is also important with Dysautonomia, most specialist recommend 64 to 72oz a day.

As far as medications you can expect to discuss beta blockers, Florinef, for hyperadrenergic POTS  phenobarbital, vasoconstrictors, as well as saline IV therapy. Again, I am not a physician and by no means am saying you need these medications for the treatment of Dysautonomia, just that they are commonly discussed.
Q. Is this hereditary, how did I end up with Dysautonomia?

A. There is such a wide range of how a person can end up living with Dysautonomia. It can be much like casting a net to figure out the cause. Many varieties run in families and researchers agree it can be hereditary. For some people symptoms begin after an event like a virus or a trauma, others find they have autonomic issues in relation to other illnesses such as Chronic Fatigue and Lupus.


Q. My family just doesn’t seem to understand what is happening to me, how can I help them understand?
A. You have a few options and if you can base how you approach sharing information with how you think they will best receive it. The What is Dysautonomia brochure from Dysautonomia International can be helpful. The Spoon Theory written by Christine Miserandino helps give a tangible explanation to life with a Chronic Illness. The Changes documentary is very informative and the information comes directly from medical professionals.

 

Q. My doctor said I probably have POTS, but hasn’t been able to answer what type of POTS I have. How do I know?

A. I understand this frustration and it is actually a very common in the world of Dysautonomia. Patients are left to find out on their own that there are in fact different types of POTS.

Partial Dysautonomia, PD – thought to be autoimmune and brought on by something specific like pregnancy, virus, accident etc..

Hyperadrenergic -this is more slow growing and progressive, a bit of a stronger version where you see tremors and the more fight than flight response

Secondary -POTS is more of a side effect of another medical issue

This is just for POTS specifically and POTS is again just one type of Dysautonomia. Many people wont fall into a clear type. For example I have Orthostatic Intolerance (usually a drop of 20/10 of BP when standing), Gastroparesis (partial paralysis of the stomach), mild Autonomic Sudomotor Neuropathy, Inappropriate Sinus Tachycardia and Bradycardia with an occasional postural trigger, POTS.

The following is from Dr. Grubb and can be seen in it entirety at the American Heart Association.

The most frequent form of primary POTS is the “partial dysautonomic” (or PD) form. These patients appear to suffer from a mild form of peripheral autonomic neuropathy characterized by the inability of the peripheral vasculature (especially the nervous system) to maintain adequate vascular resistance in the face of gravitational stress. This leads to a much greater than normal degree of blood pooling in the dependent areas of the body (legs, lower arms, and the mesenteric vasculature) while upright. The sequestration of blood away from the central vasculature elicits a compensatory increase in heart rate and myocardial contractility in an attempt to maintain cerebral perfusion at constant levels. Whereas the increase in heart rate and inotropy may initially be compensatory, the extent of peripheral venous pooling can continue to increase over time and exceed this compensatory effect. The patient then becomes increasingly dependent on the skeletal muscle pump to augment venous return and maintain adequate blood pressure. However, the degree of venous pooling may continue to increase and overcome this compensatory effect as well. A roughly 5:1 female to male ratio exists in this form of POTS. Many of these patients report that their symptoms begin after an acute febrile illness (presumed to be viral), as well as after pregnancy, surgery, sepsis, or trauma. It is presently felt that in many patients this form of POTS is an autoimmune disorder.

A second (and less frequent) form of POTS is termed the “hyperadrenergic” form.These patients often describe a more gradual and progressive emergence of symptoms over time rather then an abrupt onset. Patients with hyperadrenergic POTS often complain of significant tremor, anxiety, and cold sweaty extremities while upright. Over half of these patients experience migraine headaches as well as a significant increase in urinary output after being upright for only a short period of time. A characteristic of this form of POTS is that patients will often display orthostatic hypertension in addition to orthostatic tachycardia. Many will also have an exaggerated response to intravenous isoproterenol, as well as significantly elevated serum norepinephrine levels (>600 ng/mL) on standing. The disorder often has a strong family history. A study by Shannon et al found that some patients have a single point mutation that produces a poorly functioning reuptake transporter protein that recycles norepinephrine within the intrasynaptic cleft.1 This process leads to an excessive degree of norepinephrine serum spillover in response to a number of sympathetic stimuli, producing a “hyperadrenergic” state (similar to that seen in pheochromocytoma).

The term secondary POTS is used to describe a variety of conditions that produce a state of peripheral autonomic deinnervation or vascular unresponsiveness with relative sparing of cardiac innervation. A frequent cause of secondary POTS is chronic diabetes mellitus. However, it also may be seen in association with amyloidosis, sarcoidosis, alcoholism, lupus, Sjögren syndrome, chemotherapy, and heavy metal poisoning.
In some patients, POTS may be the presenting picture of a more severe autonomic nervous system disorder such as pure autonomic failure or multiple system atrophy. POTS can also be a form of paraneoplastic syndrome that can be seen with adenocarcinomas of the lung, breast, ovary, and pancreas. It has been reported that these tumors produce autoantibodies to the acetylcholine receptors of the autonomic ganglia similar to those identified in the postviral syndromes.

 

Q. I joined a Dysautonomia group and I have no idea what all the acronyms mean, help.

A. As an Army wife I live for acronyms! This is by no means all the acronyms associated with Dysautonomia and we can add to it if you think of one that should be included.

  • ANS   Autonomic Nervous System

Types of Dysautonomia and/or symptoms:

  • POTS   Postural Orthostatic Tachycardia
  • OI         Orthostatic Intolerance
  • OH        Orthostatic Hypotension
  • PAF      Pure Autonomic Failure
  • MSA     Multiple System Atrophy
  • NCS      Neurocardiogenic Syncope
  • NMS     Neurally Medicated Syncope (also referred to as NCS)
  • FD         Familial Dysautonomia
  • IST        Inappropriate Sinus Tachycardia
  • ISB        Inappropriate Sinus Bradycardia
  • EDS       Ehlers-Danlos Syndrome
  • MVP     MitroValve Prolaspe
  • CFS       Chronic Fatigue Syndrome
  • SVT      Supraventricular Tachycardia
  • GP         Gastroparesis

Tests relating to Dysautonomia

  • TTT         Tilt Table Test
  • QSART  Quantitative Sudmotor Axon Reflex Test
  • TST         Thermoregulatory Sweat Test
  • ECG        Electrocardiogram
  • EEG        Electroencephalography

 

Q. I love your Blog and all but where can I find other sources of information?

A. The Dysautonomia Sites I frequently visit:

Informative Sites:

Dysautonomia International

Dysautonomia Information Network

Great Blogs to get your information and a laugh or two:

You could always just stay right here ;)

Living with Bob (Dysautonomia)

Musings of a Dysautonomiac

 

Do you have a question about Dysautonomia? Did you have a question that you’d like included to help others? Let me know.


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22 Responses

  1. Linda Wilson says:

    Great piece Carrie. Very informative and helpful to those who don’t know . . . what, when, how, why . . . if . . .

  2. Awesomesauce as usual!! Great article for those questioning if they have this as well as for those of us that need a refresher course. I’m in the process of getting all my info together to take with me when I hopefully see a new dr. (EP) and this will really help tremendously. Thanks for the plug too, you’re a sweetie! Be well, my friend :)

  3. in pursuit says:

    This is exactly why your blog has exploded and others seek you out to publish in magazines! You do such a wonderful job breaking things down and giving people the tools to take the steps necessary to have their questions answered!
    Way to go!
    Vicky
    thepursuitofnormal.blogspot.com

  4. New follower from the blog hop via email
    Please follow back at
    butterflyintheattic.blogspot.com/2013/04/national-postcard-week-2013-postcard.html

    Blessings
    Colleen

  5. Jei Crochet says:

    following you via feed burner! I hope you follow back my blog ;)

    jeicrochet.blogspot.com/

    Found your blog at hump day hop!

  6. Hi Carrie, in response to the comment you left on my blog about getting a wheelchair – awesome! I’m sure it will benefit you hugely like it has done for me, you are going to be hot wheels! (sorry couldn’t resist that one) keep me updated with how you get on won’t you?
    Also, this post was very interesting to me, there are a lot of Dysautonomia symptoms that cross over with those of my illness but I do often wonder if I have been misdiagnosed or that something has been missed along the way as I have many symptoms that people with M.E don’t generally get and many of them are mentioned in your symptoms section. I’m having a tilt done soon so we’ll see how that goes, but when so many of the same symptoms are present with so many illnesses if is often easy to get carried away! Thanks for sharing and I love the new avatar logo thing!
    Hayley-Eszti x
    hayleyeszti.blogspot.com

    • The power mobility aid people are coming out on the 14th to see if I can get an ultra bad ass one. Fingers crossed for insurance to pull through.
      As far as M.E and Autonomic Dysfunction, they often go hand in hand. I’d be curious to see your BP and HR sitting down for a few minutes then after standing for 3 to 5 minutes.
      I believe long term M.E could cause Orthostaic Intolerance (a Dysautonomia) and oddly enough Orthostatic Intolerance can cause chronic fatigue. A which came first mystery.

      *for others who may read this M.E is also known as chronic fatigue syndrome, a debilitating medical condition of an extreme exhaustion lasting longer than six months. Think new mom and multiply it by two and extend it by possibly years.

  7. Anonymous says:

    Great info :). Now I can tell the difference in our age because what you call a Poor Man Tilt Table Test…used to be called a ‘Ragland’s Test”. The old timer docs (not too many still around) know it well. The younger health care professionals tell me they’ve never heard it called that before. I was in junior high in the early 70’s when the school nurse did the Ragland’s test and told my parents what was happening. And when I’d go to donate blood, the nurses would make me go outside and run around the building to raise my bp before I could give. In the early 90’s, and endocrinologist did another Ragland’s test -he was the last doc I recall who called it that. Guess I was still young enough then that they still thought that I could still grow out of it. Way back when, I was told to eat more salt but I hate salt. If I get really bad off, I know it because I’ll start craving pickles and olives :p. As bad as this thing was when I was a kid…I could have never imagined that it would have gotten as bad as it did. Now I’m doing pretty great!! It still runs my life :(.

  8. Jen says:

    Hey Carrie ~ I just found your website via facebook and actually, I can’t remember how I found it on facebook. LOL Anyway, I’m 99.9% sure I have dysautonomia, but when I asked my dr. about it she looked at me like I was green. She sent a referral to a Neuro and the Neuro basically told me that because I wasn’t “male, old or diabetic” I did NOT have dysautonomia. However, she did say I had orthostatic hypotension which … isn’t that a dysautonomia or one of the symptoms? I’m constantly dehydrated and well, I just have almost all the symptoms. She told me she thought a referral to a cardiologist would be “overkill” and “very unnecessary.” So, do I look for a new Neuro or go straight to a cardiologist? I have blood pressure issues, super fast heartrate anyway, so there is reason to see a cardio (plus my mom, my aunt & my grandma all have A-Fib). What’s your opinion? Thanks!! Jen

  9. Jen says:

    okay carrie i’m trying again to comment just to see if it works. hahahhaha!

  10. […] That crazy Dysautonomia thing I keep talking about… […]

  11. Teena Jones says:

    You have worked very hard to provide such detailed information! Thank you for that. While I do exhibit quite a few of those symptoms, I don’t think this is what I have due to the fact that I have other symptoms not listed. My current diagnosis is “a random autoimmune disorder” I have a battery of doctors,(rheumatologist, dermatologist, hematologist/encologist…) and vast majority spend a lot of time scratching their heads and taking pictures. I feel as if I have become the poster child for WTH? (what the heck?) I do appreciate your blog and facebook page updates on how you cope. Thanks again for what you do!

  12. Tina says:

    I need help!!! So sick and to horrible to state on here. Infection caused by failure to diagnose, rapidly worsening dysautonomia, denied medical care by ones failure to protect the other and many other SEVERE things requiring assistance!!!! I am afraid of what is happening and what will happen if I don’t get treatment of this infection treated. I am also afraid of what is happening to me. The dysautonomia was already bad enough and now I can’t explain how bad this is. There is to much wrong with me and no TEAM. A disease in every organ and would take so many specialists to find the root illness that has been a mystery from birth. Now a very long compiled list. I don’t think there is any hope for me now. I’ve been neglected and misdiagnosed for to long. Now this infection of fungus and resistant staph on top! No where to turn. Fever for a year, 2 seizures from it acutely spiking, spitting blood, lost vision in right eye, infected skin, kidneys are killing me, boils on skin, bleeding skin from water, severe daily migraine, cyclical vomiting syndrome, pelvic congestion syndrome worsening causing severe pain in legs into feet, gave boils to boyfriend, no period/HCG in blood but not pregnant along vaginal yeast infection showing no yeast on culture with spotting and internal pain/not intimate by being so sick, started as oral thrush with fever in early August 2013 which the doctor refused to do an oral culture every month with anti fungal sensitivity as more symptoms were happening and when she finally did in late November showed exactly that the anti fungal WAS resistant/culture showed Candida albicans with yeast seen on that culture as gram stain negative and the other 4 showed the same but NO YEAST SEEN as done by others! Told the name of Pseudohyphe/invasive candidas/mycosis along a genetic specialist calling her to tell her I needed to be admitted for treatment immediately or organ failure would occur. She refused. I need someone to intervene as my voice is going no where and symptoms above are stated” anxiety”! I wish! That would be a quick fix. My website for patients, awareness of rare conditions and my dreams of being a patient advocate do not seem a possibility anymore. I know I’m helping others by the many emails I receive but want to more helpful. I hope this gets to the right person to help me! I can no longer even advocate for myself. Thank you for reading and sorry so long. Trying to give the best information and feel free to contact me@503-501-8652 or the ” contact tab” on my website. I also hope my website is helpful to you!

  13. Danielle says:

    Hi there fellow PoTsies 😊 hope everyone is doing well. So now I’m going tho get a loop recorder to see what exactly is going on. Heart flutters, I feel my brain and eyes aren’t connecting properly, and other weird stuff. Quick question though. What’s up with my body aches?? Everything from my skin to my bones hurts=( why?? What doctor or test do i do to figure it out? Rheumatologist said tests are negative. Help pls! Thanks, D.

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