Posts Tagged ‘Dysautonomia’

Diane Sawyer arranged for my Service Dog

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

It all started almost a year ago with a phone call from my sister in law. She happened to be watching Diane Sawyer on ABC World News and saw that the upcoming story was on service dogs being trained for people who faint. She called me, my sister in law… not Diane Sawyer… I put ABC World News on then I called my dad and we all watched it.

Link: Dog Saves Owner From Fainting Could a dog’s sense of smell help monitor blood pressure?

Canine Partners for Life has trainers who work with potential cardiac alert dogs. The hope is to detect the drop in BP that happens right before a person becomes symptomatic. They never mention what the young woman in this interview suffers from but it is clearly Orthostatic Intolerance, mostly likely Hypotension since all of the emphasis was on blood pressure and not heart rate.

I called CPL and we spoke about my medical issues and symptoms and they sent an application packet. It took me almost a week to fill out the 8 pages of questions, have friends write reference letters (thanks Dawn and Meredith) and I had to write two essays. I wrote the check for the application fee and printed off 3 photos of my family and I as they requested, and it was in the mail.

CPL reviewed my application and they felt they could train a dog for me. I was accepted to the program but it was far from a done deal though. We had a SKYPE interview to go over more details. Murphy’s Law, the connection was less than desirable but we were able to finish the conversation. During the interview we talked more about what I like to do, places I like to go, as well as my ability to care for a dog physically, emotionally, as well as financially.

The next step was a letter from my Neurologist, he was more than willing to fill out the paperwork with additional information he thought would be helpful. Then it became official, my name now sits on a wait list at Canine Partners for Life.

Then a bit of anxiety, how different will life be with a service dog, how long will my wait be, do I really need this to improve my quality of life… I am sure someone could use it more than me. Ahhh, that last line, so true. I have a non stop internal battle with really believing this is my situation but that is a whole different post.

Because I have a child with a dog allergy we have to wait longer than the average person on the list, waiting for not only a poodle or poodle mix when they work mostly with retrievers but a poodle or poodle mix with a knack for potential cardiac alert could be years from now.

So far I am almost at one year into my wait. Every six months there is some type of update to do. At my six month mark it was a detailed journal of episodes and I am coming due again for my next assignment. I knew it was too soon but I couldn’t help inquiring, the matches for the summer session have already been made.

Some really great news is that as we have sat this last year on the wait list at Canine Partners for Life our family dog has started alerting to my episodes. Now Maggie the Goldendoodle is no official alert dog, she alerts to pizza just as well as an episode. I am pretty sure if pizza was in the same room as me having an episode she wouldn’t look twice at me.

When its quiet in the house and she is paying attention to me, and not napping on the couch, she will alert and it gives me the 5 to 10 seconds that can make a difference in getting to a better location. We are working with Maggie’s training so she can focus her alerts a bit more consistently while we wait for my service dog.

This is our family pet Maggie the Goldendoodle. The way she noses my hand when it starts is what she starts doing before my episodes.

There is still a long wait but it is helpful to have Maggie doing her part now though I do look forward to someday having a dog trained to focus on me, even more so than pizza. I will keep you posted on Maggie’s training to see if she can fine tune this natural skill as well as our journey to receiving a service dog.

training hard

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.


WEGO Wordless (or wordy) Wednesday

April 17th, 2013 by Carrie, the Just Mildly Medicated gal

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)

As Wordless As My Wednesday Gets, The WEGO Health Activist Writer’s Month Challenge continues…

April 3rd, 2013 by Carrie, the Just Mildly Medicated gal

Wordless Wednesday: Post a picture that symbolizes Dysautonomia and my experience.

(yes I know, I have already put words down to explain Wordless Wednesday. I never said wordless was my thing…)

I opted to go personal and show me. I like the think of myself as a person with a lot more depth than ‘the girl with a chronic illness’ but the reality is I also feel split in two.

Dysautonomia has created a line for me and not just the one on my forehead that could use some botox. There is the before and after line, the one that like any major milestone divides life into two sections.

There is also the more ongoing line, the one that separates when you are doing well and when you are not doing well. For me the line is blurry and is ever changing. It is an unpredictable almost tangible guest in my life that has stayed far too long.

These are two sets of photos of me all taken within a few weeks to show Dysautonomia and my experience.

My Pure Autonomic Failure; Up and Running with WEGO Health Activist Writer’s Month Challenge

April 2nd, 2013 by Carrie, the Just Mildly Medicated gal

Every April WEGO Health hosts the Health Activist Writer’s Month Challenge. I am excited as this is my first year. For 30 days WEGO challenges us to share with provided topics.  I will do my best to share each day through Just Mildly Medicated Blog, Facebook , and twitter. (I just oxford comma’d and I liked it) If you are not yet following Just Mildly Medicated all over the Internet today is a good day to start. 

 
I have been diagnosed with Pure Autonomic Failure; it’s a type of Dysautonomia. Dysautonomia is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). My condition causes me to have Chronic Fatigue, frequent Premature Ventricular Complex, GERD, Long QT syndrome, Inappropriate Sinus Tachycardia and Bradycardia, episodes of non-sustained Ventricular Tachycardia, Orthostatic Intolerance, and a spasm of accommodation which happens in ciliary muscle of the eye.
 
 
I am not always symptomatic which can be confusing for me as well as those around me. It is very hard to understand why I can go to the grocery store and a movie one day and the next walking to the kitchen can cause palpations, sweating, and dizziness. This unpredictability makes it difficult to make plans and causes emotional stress. Although I am an introvert by nature I do crave social situations and do not like being possibly thought of as unpredictable.
 

When your autonomic nervous system is dysfunctional in the way that mine is, both parasympathetic nervous system (PSNS) and sympathetic nervous system (SNS)  you tend to have opposing symptoms which makes getting a diagnosis difficult. For example I have both bradycardia and tachycardia; one is a too slow heart rate and the other a too fast heart rate. Most hours of the day, even during sleep, I have a range of anywhere from 50 to 120. I have been ‘stuck’ in each for more than 24 hours. Although they have opposite feeling neither are fun.

I wish I knew where this originated, its perfect

Like many people with a chronic invisible illness, I was misdiagnosed and treated incorrectly for years before stumbling on the right doctors who understood what was happening to me. When I say stumble I truly mean it too. I went to a walk in clinic for chest congestion the first time a doctor said he was concerned about my heart and nervous system and that I should see a cardiologist ASAP. I remember him scribbling notes on the strip from my heart rate monitor. “Long QT for rate / HR from 65 to 112 in 15 min laying down”. It still seems so crazy to me because that day I walked out thinking that guy was a nut job.

WEGO has asked me to share a few posts I think would be helpful to someone newly diagnosed. This actually means a lot to me because although there is no evidence that Dysautonomia (other than Familial Dysautonomia also called Riley-Day Syndrome) is hereditary; however my mother, sister, and daughter have all been diagnosed with different types of Dysautonomia and now aside from that a friend from High School is going through the diagnostic process for what could be Dysautonomia.
  

 If you find yourself wanting more of my story with Dysautonomia  you could read 30 Things About Me and Dysautonomia or Don’t Let Your Chronic Illness Define You.

 

I have what I have grown to love as the Pacemaker Series. (As of now I am still a NO on a pacemaker) The Possible Pacemaker and Phil Collins, To Pacemaker or Not To Pacemaker and my most popular post New Cardiology Break Up and Some Muay Thai Moves. 

 

Some blogs from others on the Dysautonomia journey that I just love are Musings of a Dysautonomiac and Living with Bob (Dysautonomia)

I hope you have a chronically amazing day!

Passing out; location, location, location

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

Location, location, location… it’s important in more than just real estate!
With hindsight being 20/20 I can tell you I should have chosen to clean the bathroom but instead I chose to bathe my dog.
I was pretty proud of myself, having a goldendoodle can be a lot of grooming maintenance so this was crossing a big thing off the ‘To Do’ list. It also means sitting with a blow dryer for just shy of an hour to get this sweetie pie dry. I actually love this time because its alone time and as a mom of 4 bathing the dog feels like a break.
 After about 30 minutes I felt odd and knew passing out was around the corner. This part of my world with Dysautonomia. It always amazes me how many thoughts I have in those moments beforehand. I slowly take in my immediate surroundings, this is crucial to do as soon as the feeling hits so I can have as much control over where I gracefully place my wilting frame.
Its during this survey of the land that I realize a few things
1. I am in the bathroom 2 boys share
2. This bathroom hasn’t been cleaned in exactly 7 days
3. I can actually see pee at the base of the toilet
So I wake up and honestly can’t decide if I think its funny or terrible. Obviously both because I took this pic when I came out of it so I could show you how gross it was.
My husband just saw the gross side of it and cleaned the boys bathroom when he got home, he is awesome. I still think its kind of funny.
Cute Goldendoodle pics to make you less disgusted at the state of my boys bathroom…

Dysautonomia; Celiac Disease; hypoglycemia; Rare Disease Day

March 1st, 2013 by Carrie, the Just Mildly Medicated gal

This Guest Blog Post is from a teenager in my very own town. Our coming into contact was one of those odd connections that a few minutes difference or one conversation change and we’d of never known about each other.
After a doctors appointment I called my husband to let him know how it went. He was getting ready to go into a meeting but was able to get the update. While in the meeting he mentioned to a colleague that I had been diagnosed with Dysautonomia, something called POTS. This colleague couldn’t believe it, she told my husband how her daughter has POTS (postural orthostatic tachycardia syndrome heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing).
Thanks so much for sharing on Just Mildly Medicated!
 
 
1. The illness I live with is: Dysautonomia ,with digestive problems, heat and exercise intolerance,crazy heart beat and gerd.  I have a cranky pancreas (some times reactive hypoglycemia, sometimes diabetics/pre- diabetics, sometimes chronic hypoglycemia). I am learning “disability not other wise specified” I also have food allergy’s and intolerance as well as celiac disease.
 
2. I was diagnosed with it in the year: 2011 
 
3. But I had symptoms since: 2010, some I’ve always had. 2012 for food allergies
 
4. The biggest adjustment I have had to make is: Not being able to go, go, go . I often cant keep appointments because I never know if i will feel good or not.  Practicing extreme measures to avoid cross contamination of my food. If I touch something that has been touched by food that is not safe for me to eat then touch my food, and eat it i will get very sick. Being prepared to treat hypoglycemia when not at the house. 
 
6. The hardest part about mornings: Getting motivated to face the day, especially fixing breakfast. And the indigestion and bed taste (gerd) in my mouth I often wake with . 
 
7. My favorite medical TV show is: I don’t watch medical TV, but does Dr. Pol count. 

 
8. A gadget I couldn’t live without is: blood glucose meter. And for my sanity (or lack of ) a lap top. 
 
9. The hardest part about nights: Getting my blood sugar stabilized to go to sleep. 
 
10. Each day I take: no pills
 
11. Regarding alternative treatments: I prefer the normal ones (like eating salt) over pills, but roll my eyes at the ones that say things like “we can cure your diabetes with  this herb and you can eat junk food”. 
 
12. If I had to choose between an invisible illness or visible I would choose: invisible. On a good day, it can just be a good day with minimal time spent on my illness, not constant stares and pity. 
 
13. Regarding working and career: I’m not old enough to work ,but I’m not looking forward to that when I am of age. I can barely get to a doctor appointment much less act fine for many hours a day.
 
14. People would be surprised to know: How much goes into eating or an outing. 
 
15. The hardest thing to accept about my new reality has been: Not doing a hole lot to avoid over doing it. 
 
16. Something I never thought I could do with my illness that I did was: There is nothing I have done I didn’t think I could do. 
 
17. The commercials about my illness: I haven’t seen any. 
 
18. Something I really miss doing since I was diagnosed is: Well a official diagnosis didn’t change what I can and can not do . What I do miss is being able to do a bunch in one day, and  eat with no worry of allergens. 
 
19. It was really hard to have to give up: Being able to do what ever I want like show horses all day in the heat, do strenuous horse chores (even more when its hot out). 
 
20. A new hobby I have taken up since my diagnosis is: Being evolved in the illness online community, not actually posting but reading others. 
 
21. My illness has taught me: Not just my illness but events tied to it, have taught me a lot of compassion. Never judge someone, you never know what they are going though.
 
22. It bothers me when people say: When doctors, or healthy people discount what I’m saying. The doctor who doesn’t care if that medicine is making you worse, “it should help”, or you seem fine. “Is it really necessary to test you blood sugar that much ?”  Yes, I go very low with no symptoms. If I don’t test to find out it could get really bad. 
 
23. But I love it when people: Are supportive, and allow me to take my mind off it. Or show genuine concern and sincerity but don’t quiz me on it. 

24. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. 
 
26. When someone is diagnosed I’d like to tell them: Mine is that same as Just Mildly Medicated, you will find a new normal . 
 
27. Something that has surprised me about living with an illness is: I got used to it. Not as well as some people, when I feel bad I still can’t function but its not as bad now. 
 
28. The nicest thing someone did for me when I wasn’t feeling well was: Just sit with me, I didn’t feel well enough to talk but just keep me company. Also take me on a car ride when I was sad and kind of depressed.
 
29. I’m involved with Rare Disease Day because: Well I wouldn’t have been If not asked , I wasn’t aware it existed, I only knew of world diabetes. Now that I  know I wanted to participate and spread awareness for Celiac Disease, food allergy’s, Dysautonomia and any blood sugar problem. 
 
30. The fact that you are reading this list makes me feel : Like I have helped spread awareness for the conditions listed above. And a little less of a lurker.
 
To see a little more about what your Autonomic Nervous System does and all of the things that can be impacted when it doesn’t function properly you can see the image below.
Thank you for always checking in on Just Mildly Medicated

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.