Posts Tagged ‘Autonomic Nervous System’

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.


A letter to Dysautonomia; WEGO Health Activist Writer’s Month Challange

April 5th, 2013 by Carrie, the Just Mildly Medicated gal

Dear Dysautonomia,

I am not sure you are aware but you are completely overworking my Autonomic Nervous System (ANS) and you’ve caused me to be completely fried. You’ve messed with a system that’s whole purpose is to fine tune the automatic functioning of my organs and help my body maintain stability and balance. I mean seriously, who screws with that?

While I have your attention I have to ask, why are you such an overachiever? I mean you’ve hit the entire system, both sympathetic AND parasympathetic.

I am sure you find it quite exhilarating to have me in a constant state of fight or flight but I am tired. This Sympathetic Nervous System (SNS) hyper drive will serve me well if there is a zombie apocalypse or if I find myself zapped back in time and am a cave-woman. Having one’s body respond to everything as if it is a potential life altering crisis isn’t really all that necessary in this time. You cause people to say things to me like “calm down it’s just the phone”, well no kidding. I can’t help that my heart rate jumps to 125 at the sound. But if that sound were a zombie approaching I am ready!

Never mind, you’ve screwed me even if there is a zombie apocalypse. If my heart rate jumps to 125 at the ringing of a phone imagine what it would do if I were in need to kick some zombie ass. Ventricular Tachycardia and running for your life don’t mix well.

Remember that one time when you decided to kick around with my Parasympathetic Nervous System and keep my heart rate in the 40’s for 24 hours. Yeah, that was not fun. Oh, and that ciliary muscle in my eye… cute trick, very fun house mirror style vision. I would be fine if you just didn’t do that anymore.

Most people have the joy of not even knowing how well the Parasympathetic and Sympathetic complement each other, one gets you a little revved up the other calms you down. But you Dysautonomia, you have me very aware.

The one thing I will give you is that you are ever changing and willing to spice it up a bit. It is amazing the control you have and your ability to multitask. You manage to have my body so confused as to if it needs to panic or fall into a coma that I end up passing out or having convulsions. Yes, all that is because of your nonstop tampering.

I will have to close this as my heart rate is sitting at 52, I am due to take meds, and I am ready to put my head back on the couch and drool a bit.

At your mercy,
Carrie @ Just Mildly Medicated

Autonomic Nervous System Overview
From Comprehensive Health Assessment – Autonomic Balance Analysis

The autonomic nervous system functions to sustain life by exerting control over the following functions/systems:
* Heart (control of heart rate via contractility, refractory states, cardiac conduction)
* Blood vessels (constriction and dilation of arteries/veins)
* Lungs (relaxation of smooth muscles of the bronchioles)
* Digestive system (gastrointestinal motility, saliva production, sphincter control, insulin production in the     pancreas, etcetera)
* Immune system (inhibition of mast cells)
* Fluid balance (constriction of renal artery, rennin secretion)
* Pupil diameter (constriction and dilation of the pupil and ciliary muscle)
* Sweating (stimulates sweat gland secretion)
* Reproductive system (in males, erection and ejaculation; in females, contraction and relaxation of the uterus)
* Urinary system (relaxation and contraction of bladder and detrusor muscles, urethral sphincter)

Dysautonomia; Rare Disease Day 2013

February 25th, 2013 by Carrie, the Just Mildly Medicated gal

February 28th is International Rare Disease Day. Rare Disease Day is an day of advocacy, in the US a Rare Disease is defined as affecting fewer than 200,000 people.

This week I am proud to say people who have a rare or chronic illness have agreed to share their story in hopes to spread awareness of various illnesses as well as Rare Disease Day. Some of these will fit the American definition of a Rare Disease others are chronic debilitating illnesses.

Just Mildly Medicated is a blog that focuses on my life with my chronic illness, Dyasautonomia. Dysautonomia is a large umbrella term that encompasses many conditions that often overlap. While Dysautonomia as a whole is not considered a rare disease by American standards, estimated to possibly affect 500,000 Americans though we are far from that number in actual diagnosis. Dysautonomia is not well understood and is often misdiagnosed. Even more so than the larger umbrella term the specific conditions that fall under Dysautonomia are often rarely diagnosed and treated properly.

Dysautonomia International lists a few more common autonomic illnesses such as Neurocardiogenic Syncope, Orthostatic Intolerance and Postural Tachycardia Syndrome other less common are Pure Autonomic Failure and Multiple System Atrophy. This is by no means a full list, just a few examples. My version of Dysautonomia, Pure Autonomic Failure is considered a Rare Disease by the  US Department of Heath and Human Services.

The Autonomic System is complicated and having a system that is not functioning properly is difficult to treat because the symptoms and conditions are ever changing. A person could have a common type of Dysautonomia, say Neurocardiogenic Syncope, then develop a spasm of accommodation in the ciliary muscle of the eye. Both controlled by the same system and caused by the same illness yet one considered more common the other rare.

I hope this week people find the time to learn a bit about what life is like for those who live with illness; through sharing we create more understanding.

Thank you,
Carrie @ Just Mildly Medicated


 

The beginning of a trip to the Mayo Clinic, Night Ranger and Roller Coasters

February 18th, 2013 by Carrie, the Just Mildly Medicated gal

Hold on, let me get some coffee…

I knew the referral was in the works and that a letter from the Center for Autonomic Dysfunction was on the way to add to my records but seeing it, knowing that soon I will be hashing out when the Autonomic and Cardiology departments can see me during the same week, it is kind of strange.

I tried to actually avoid the Mayo Clinic. Early on, I was given the option of Mayo or a small Florida based Autonomic Dysfunction Clinic. I looked at the testing each one required and went for the small facility to avoid being a lab rat. Unfortunately being diagnosed with cardiac issues, gastrointestinal, and neurological it has been agreed on that Mayo is the place for me to get the most detailed understanding of all the layers of medical issues.

So in the car dear hubby asked what exactly they’ll do to me at the Mayo Clinic. I wasn’t much in the mood to discuss it so in true to form for me I digressed to what was on the radio.

We went over the meaning of Night Ranger’s Sister Christian. Just in case anyone asks you it is NOT about a girl who is conflicted about becoming a nun, damn misleading 80’s videos. It was actually written by the drummer about his coming of age sister (Chrissy) who was ‘motoring’ around town with the wrong boys.

Okay, now I am ready to talk about it… From my conversation with the clinic and from a few friends from my support group who have gone for Dysautonomia I have a general idea of what to expect.

My week or two will consist of lots of tests. The basic labs and then a slew of tests I have already done will be done again and compared. ECG, EEG, empty gastric study, stress test, and TTT (Tilt Table Test).

The TTT is very common in the world of Dysautonomia and it isn’t a fun one for us. I am not looking forward to doing that one again. This little short range of movement shown in the pic below causes a person with an autonomic dysfunction all kinds of crazy havoc. Some pass out, for me it caused irregular changes in my blood pressure, heart rate and rhythm abnormalities and near syncope.

My description of it would be a sensation that mimics a roller coaster.

 

graphic is from the Hopkins website

 

The big hope is to forever squash the pacemaker debacle. For anyone who has followed for a while I have a few specialists (2 EP Cardiologists, Dysautonomia Specialist and a local Neurologist) and they all believe I have a different form of Dysautonomia and have very opposing beliefs on if I need a pace maker and defibrillator to keep my Inappropriate Sinus Tachycardia and Bradycardia in a safe range. I am kind of tired of sitting in on them while one reads the last report from the other.

I personally thought it should be settled in an octagon, apparently the Mayo Clinic was a better option. (wusses)

One of the cool tests is the Quantitative Sudomotor Autonomic Reflex Testing (QSART). The purpose of QSART is to test the small nerve fibers which go to the sweat glands. It to stimulate your sweat glands to see if the nerve and gland respond with a normal ability to sweat. Sounds fun…

pic from the University of Pittsburgh
Neuromuscular Disease Division

 

A new test for me, and my local Neurologist is down right excited over it, is the Thermoregulatory Sweat Test. A gold powder that changes color with sweating is applied all over the body. So yes, I will be gold dusted and pretty much think I will look like Angelina Jolie in Beowolf. Oh and I should add my doc is geeky excited over a cool test, not that I will be dusted with gold, the hubs is kind of digging the gold idea…

I edited for PG rating from Film and Digital Media on Blogspot

 

I will then enter what has been described to me as a giant tanning bed that gets really hot. It slowly increases temperature, which will eventually will make me sweat. Digital photos document the results and apparently how I sweat will help confirm what is happening to me and why.

image is from the US National Library of Medicine

 

Now why in the world didn’t I pursue this first you ask?!?!

Because even the Mayo Clinic doesn’t have a secret formula to cure or ease Dysautonomia. I am in the hopes the tests will lay out, very specifically with no room for interpretation, what type of Dysautonomia I have and possibly why I have it. My mother suffers with this condition, as does my daughter and more likely than not my sister and cousin. I hope that I can get answers that will help all of us receive the care we need.

I will keep you posted, until then I will remain Just Mildly Medicated.