Posts Tagged ‘Inappropriate Sinus Tachycardia’

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.

New Cardiology break up, Muay Thai moves and a 5K… again, just go with it

October 24th, 2012 by Carrie, the Just Mildly Medicated gal

I will preface this by saying I am thankful to have been diagnosed by a wonderful Dysautonomia specialist and I have a fantastic local Neurologist. I am on medications that have made a world of difference for me but I still have some heart issues that have not improved with medication. I am on the quest to find a cardiologist that I can fall in love with to add to my team of current specialists.

When you’re hoping for a cardiologist that understands your condition and then a sub-specialist of cardiology has a nurse call you at 8:30 on a Monday morning because they have cleared this (new to you) EP Cardiologist’s schedule to see you the next morning you feel how exactly…?

For me it was excited and nervous. I was excited hoping he would have something new to add, I had assumed he’d looked over my records and treatment plan and had an opinion about something. I was nervous to hear just what the opinion was considering the nonstop talk of pacemakers I’ve had with doctors over the last 6 months. I was also nervous that this guy just wanted to “see” my crazy Dysautonomia and heart issues with no real input. I even warned friends I might get all crazy and muay thai his ass, just saying…

To add to the stress I had no one to watch my youngest, so I would be bringing a 4 year old who I knew would undoubtedly want to wear a princess tiara and repeatedly ask for snacks the entire time. I had the brilliant plan to give her my old jacked up black berry and pretend she was my personal assistant. I would say things to her like “Did we get those first 3 chapters back from the proofreader?” and “Can you move my lunch to tomorrow?” I even got off of Facebook to go work with her on her assisting skills. A few friends were concerned about child labor laws, I argued I was giving bright youngster an interning opportunity… tomato ‘tomahto’

So my assistant and I arrive and are escorted to a very nice office, okay so it was a regular exam room. I then I recite my medications and dosages to the nurse, hahaha, I actually have to hand a printed copy considering there is no way I could remember everything I take. I also do an ECG, BP lying down, BP standing up for 3 minutes (almost hit the floor) and answer the nurses 100 questions about Dysautonomia as if I were being interviewed. I cannot help but be a tad bitter, am I not here for you all to share your medical expertise with ME?

I already feel like this is going badly and am a tad emotional because I always get my hopes up and am disappointed more often than not by cardiologists. I have a track record of them thinking I am “interesting” but having little to nothing to offer me. This one proved to be no different. He comes in reading my records, a sign I have now learned means he has NOT read them before. He sits down and asks me what kinds of things I find hard to do with my condition. I answer with some of the basics, if I managed to do everything needed to get my kids to the park pushing a kiddo on the swing, because of the standing and back and forth motion, makes me so dizzy if I continued I would likely throw up or pass out. I also have a hard time with the aisles at the grocery store; between the fluorescent lights and walking I have to take a break every few aisles because of the dizziness.

He asks if there are things I want to accomplish that I feel this condition holds me back from. I answer a huge “YES.” Internally I say “umm yeah dumb-ass getting through a play date or grocery store trip would be good” but I refrain from bitter sarcasm, mostly because my daughter is sitting next to me all adorable pushing buttons on the black berry.

I think for a minute and say “Aside from big out of reach things I should be able to do a 5k. I am strong enough, I just pedaled 115 miles over 6 days on a recumbent stationary bike for Invisible Illness Awareness Week and I do Pilates twice a week. The upright jog/walking is just too hard for me to be able to do a 5k.” His dumb ass says to me “You should find a way to learn to accept your new limitations.”  All I can think is ‘Then why in the hell did you ask?’

Okay let me say I understand the intent behind this statement; I do not want to push myself to do something unsafe. I have a husband and 4 kids who need me. On the same note if you want to be on my team the answer needs to be “Let us see if we can figure out a way for you to do this.” I have just leapt over his desk and kicked him in the throat in my imagination, which I think means I have a strange smile creep across my face.

Yep, that move right in the middle… I was just glad I didn’t wear a skirt!

He continues by addressing the pacemaker comments all over my records. He says he would classify me as controversial and does not recommend I go forward with it. The way he says it pisses me off, as if it was my dumb idea or that I have been sitting around hoping for it. On the same note I admit some disappointment because if he said “it will help, let’s do it” I would have been scared but felt like we were doing something. He talks about infections and all the other reasons, which sound very logical.

He then stands up and extends his hand to me and says “It was a pleasure; your case is very interesting.” WHAT THE [email protected]??… Nothing, not a new medication, or dosage… no idea, or even comment really. I gather my little girl and walk out (no hand shake). At the checkout desk the gal tells me he’d like to see me again in 6 months, I tell her “there is no need for a second date, it is over.” She looks up at me and smiles ear to ear, she either thinks I am crazy or I made her day.

So I cried on the way home, and off and on all that day. Not because of bad news but because this condition has more disappointment than I can handle some days. The next day I assembled a team of friends and loved ones, including a nurse familiar with my condition, to finish a 5k with me. There will be mostly walking and breaks are a given. I may set a record for the longest time taken to ever finish a 5k, but I will finish it.

November 4th

To pacemaker, or not to pacemaker, that is the question

October 14th, 2012 by Carrie, the Just Mildly Medicated gal

You may have just found me and need to catch up on things. If so, a quick recap- I have dysautonomia and it sucks. I have two out of four doctors who would like to put a pacemaker and Implantable Cardioverter Defibrillator in me, one who thinks it won’t help and a fourth who I haven’t met yet… and I listened to Phil Collins a lot last month.

The beginning of my pacemaker adventure and how Phil Collin’s played a big part, alright it was admittedly a small part, okay so it was more like my mind wandered…

30 things about my life with dysautonomia, geesh catch up would ya?!

Par for the course when you have something rarely diagnosed, doctors either ignore you or tend to give you a lot of attention while they try to figure you out. When they can’t figure you out they tend to break up with you  or stop making eye contact in which you have to break up with them. It seems very emotional but with no real connection, lots of oral given and received and never dinner or flowers.

Oh maybe I could start a Fantasy Football league only with physicians… I like it, Fantasy Physicians. All of the people I network with who have invisible illnesses can come up with their dream team of doctors and we will keep track of who actually knows how to treat us and score accordingly. Okay I digress…

Neurologist says: “Your brain is beautiful, EEG looks wonderful, however I couldn’t help but notice the ECG was crazy the whole time. It was wild to watch. I am calling your cardiologist this afternoon. I would say you might need a pacemaker and defibrillator for a quality of life improvement.”

Yes, he said my brain was beautiful. My heart is crazy, not my brain. TOLD YOU I WASN’T CRAZY… sorry didn’t mean to get all caps lock on that. I just got all excited…

Dysautonomia specialist says: “Your stress test showing non sustained ventricular tachycardia after 3 minutes in conjunction with your heart rate ranging from 50 to 180 when you’re sleeping concerns me. Have you been approached about a pacemaker and defibrillator?”

There are 3 categories you can fall into when being evaluated. You can be accepted, controversial, or not warranted. The two above docs put me in controversial and yes a very immature part of me was all ‘oh yeah I am so controversial’. The cardiologist, upon hearing these opinions and having already reviewed my case, orders ANOTHER 30 days of monitoring. Okay, I can be agreeable… this is a big deal and he is just wants to be sure. So I wear the godforsaken monitor another 30 days and turn it in.

After all of that I get a phone call from his nurse who relays to me that at this time I am ‘not warranted’. I did a small happy dance. I keep it small as standing up happy dances before meds can sometimes make me a little woozy. I tried to let the pacemaker idea go but it did stick in the back of my mind.

Yeah I knew it would never be that easy. Last Thursday I get a phone call from a nurse at the cardiologists’ office and they have another electrophysiology (EP) cardiologist who would like to see me. No joke, the nurse calls to let me know an appointment person will be contacting me “in the next few business days” to fit me in “as soon as possible”. It’s freaking THURSDAY AFTERNOON, you know I am not going to hear from them for another week! So now I am left to wonder what does this guy or gal think. Do I need the ole ticker kick starter… or did he or she see the word Dysautonomia and want me to come in so he or she can have me lay down and stand up while taking my BP and HR just so he or she can comment on how interesting I am.

Possible Pace Maker and Phil Collins, yes there is a common thread, well to me anyway

October 11th, 2012 by Carrie, the Just Mildly Medicated gal

You: “So what have you been doing lately?”

Me: “Lots of writing, I am working on a novel, I also pedaled 100+ miles for Invisible Illness Awareness Week, oh and I just finished up a 30 day evaluation for a potential pacemaker and Implantable Cardioverter Defibrillator.”

Okay so no I don’t carry on that conversation stopper too often but some of you have heard it. Now that people know what is happening to me these conversations are happening more often and they are becoming more real somehow. It’s a hard reality but I do believe it is emotionally healthy to be able to discuss these things instead of holding them in and worrying alone.

Being a 36 year old wife and mother of four and to find out you have something wrong with you is a little unexpected. It took about 6 months and 3 doctors before I really believed something was really wrong, I mean I knew I wasn’t doing well but I had a hard time with hearing I had a rarely diagnosed condition. I mean it’s rare so therefore someone else should have it right? Dysautonomia didn’t roll off the tongue and it didn’t help that the local medical world thought I was “interesting” and hearing multiple doctors say they are familiar “but have never treated anyone with dysautonomia” wasn’t exactly comforting.

I heard doctors come together in the room with me and say things to each other like “maybe a ventricular ablation would be the best route” and “pacemaker defibrillator combo would control brady and tachy” but I thought they had to be over exaggerating and considering they rudely acted as if I wasn’t right there I did the same right back to them. If I ignore it then it clearly wasn’t said, maybe they were talking about the other lady in the next room. I took the meds they gave me and went to the next specialist, and no longer see that first cardiac team. It was a hard break up but I think they got over me. After hearing this whole ablation, pacemaker and defibrillator talk a few times with them I thought it was at least something in my future, as in 15 years maybe.

My new team of doctors, whom I trust with my life and that is a good way to feel about your doctors, brought up Implantable Cardioverter Defibrillator (ICD) and possible pacemaker combo my eyes welled up with tears. Okay here is where you have to know me, I can cry on at the drop of a dime if I want to. I am really good with dramatic effect. When I do not want to cry and it happens I am humiliated. I would rather poke myself in the eye with a pencil and say “I am sorry I seem to have something in my eye” then cry in front of anyone. The real pisser here is there were no pencils around that I could find.

The first step is apparently calling everyone. My Neurologist, Dysautonomia specialist and Cardiologist are all in cahoots at this point. The ironic part is they hook me up to an event monitor. Now I have been able to hide these pretty well but seriously I have been monitored more often than not over the last year, a gal only has so many shirts that hide 3 sticky tabs and wires, not to mention the pager style recorder. I can’t help but feel like at this point we need to just decide. The fact is though there are medical guidelines and we need to be certain I fit them and that this is the best route for me. They’ll look at my year of on again off again monitoring and decide if I fall into accepted, controversial, or the not warranted category. I am putting my money on controversial, I mean come on it’s the only fun category being offered.

The fact that the ICD was first used in humans in 1980 and approved by the FDA in 1985 was emotional to hear in itself. I mean how can I be old enough to need something made (in my mind) for an old person’s heart that was approved when I was 10. Let’s get real here, we are talking about a medical breakthrough for the heart approved when I was listening to Madonna whisper moan about feeling like a virgin and I had no real idea what she was rolling around the floor for. Seriously, I am still trying to decode Phil Collins Sussudio and I am still crushing on A Ha while they were all animated and running around trying to Take On Me. I wanted to stand up and say “I am really sorry fellas but I am way too young for this”. Instead I sat still and focused on sucking that watery mess back into my eye balls.

So the deal is IF this is even the route we go; the Defibrillator will have an antitachycardia pacing that will have a preset number of rapid fire pulses (fire pulses, because this sounds like something you want in your heart) these pulses, in all hopes, will stop the ventricular tachycardia when it happens. If it does not the ICD preforms its own cardioversion, which sounds like a lot of stuff happening to a heart just having a hard time figuring out how to beat appropriately. The pacemaker does pretty much the same but opposite, when my heart rate drops too low it will send an electrode to get things going again. At this point I am wondering if I am going to be walking around jumping from all this internal shock therapy and thinking with my awesome cane and internal shock therapy I will be able to avoid unwanted conversation with people for the rest of my life, note to self on possible bright side.

As you can tell in my mind I have already gone to a different place. It shifts a tad to a self-centered place, a place where I am still struggling to be a hot mom, for godsake I have a babysitter for this appointment to talk about pacemakers.  This just cannot be happening right now. I’d rather be at Pilates, or reading or writing or ANYTHING. And what the hell is Phil singing about in Sussudio. I actually come close to asking the doctor, I mean he obviously knows everything, then decide there is little chance he is cool enough to really know and then I might get a referral to a whole different doctor.

So now I sit and wait, knowing even if we do this it does not cure my Dysautonomia but will help regulate my heart rate so that I am more able to do things other people my age do without much thought. Like walking the dog or going through every aisle at the grocery store, I know I am really thinking big here. I will still deal with my big obstacles of Chronic Fatigue and Orthostatic Intolerance not to mention convulsions and presyncope. I know right, pretty sexy.

I think the biggest bit of information I can pass on is that I search google and found an interview Phil Collins gave. The Sussudio lyrics are based on this schoolboy crush on this girl but he doesn’t really know her so he calls her Sussudio. I personally hope everyone who pined over someone plays this song today and sings it really loud. Life is fun that way.   Sussudio


 Pacemaker Part 2

Pacemaker Part 3

30 Things about me and dysautonomia

October 2nd, 2012 by Carrie, the Just Mildly Medicated gal

Invisible Illness Questionnaire

1.The illness I live with is:
Dysautonomia (dysfunctional autonomic nervous system)  Dysautonomia is different for different people, for me I suffer with Chronic Fatigue, frequent Premature Ventricular Complex, GERD, Long QT syndrome, Inappropriate Sinus Tachycardia and Bradycardia, non-sustained Ventricular Tachycardia and Orthostatic Intolerance. Dysautonomia is considered both a chronic and progressive invisible illness, which means it’s with me for good and can become more impairing. It took a long road to get pointed in the right direction. I owe a lot to The Center for Autonomic Disorders

2. I was diagnosed with it in the year:

3. But I had symptoms since:

4. The biggest adjustment I have had to make is:
I have had times where I’ve been much worse this last year and I have to plan my day down to the details. One of my main conditions is Orthostatic Intolerance, I am basically not that tolerant to being upright so if I overdo things, my heart goes berserk or I have convulsions. I have to rest before and after everything. On a doctor visit day I can’t also go to the grocery store or I will for sure have some type of episode.
Using a cane has also been a huge adjustment; if I have to do something that requires a lot of walking and or standing I am much better off using a cane even though I am not 100% comfortable with it yet.

5. Most people assume:
I would guess that most people know how much I love exercising so they would never think I have a chronic debilitating illness. I am very limited to what I can do, I use a recumbent bike while hooked up to a heart monitor and have started Pilates with an amazing instructor who is also a nurse. I cannot stand up for long without passing out or having severe tachycardia so these are working for me.
In general people assume if you look healthy you are. For people who know I’ve been going through something I would say they assume I have a heart condition when it is actually that my autonomic nervous system is not functioning properly.
Another big assumption is that it must not be too bad because I went to the mall or worked out etc… I have good days, great days even, great weeks at that. Then I am in rough shape for a while. I don’t know ahead of time how it’s going to be or how long it will last but I assure you I do everything I can when I am good.

6. The hardest part about mornings:
The worst is having to start the first wave of medications on an empty stomach (barfaroo) and the kids wanting breakfast right away while I am still light headed and nauseated from meds. It is also very aggravating on Sunday morning when I set up my meds for the week, it takes forever and if I have a convulsions… well it’s a lot like a jigsaw puzzle I didn’t sign up to do.

I took this to show a friend how organized I am

then I did a jigsaw puzzle, or as she called it I had medicinal confetti

7. My favorite medical TV show is:
I used to love House, not a huge medical TV kind of person

8. A gadget I couldn’t live without is:
My IPhone would be my gadget, I am thankful to be chronically ill in a time when I can still have communication and entertainment even when I am stuck at home.
(Yeah Facebook and Words with Friends what would I do without those links to the world??!!)

9. The hardest part about nights:
Waking up with tachycardia or trying to fall asleep with Bradycardia, both are scary feelings.

10. Each day I take:
13 prescription medications (some are the same RX multiple times) and 2 over the counter meds. So that is 105 pills to potentially spill, yes I am still stuck on that. That was a crappy day.

11. Regarding alternative treatments:
I salt load but will need salt tablets soon (barf), I have to try and drink about 80oz of water a day, I have some compression wear for my arms and legs and when other friends with dysautonomia find something that works I give my doc a call. Exercise is so important; I now try to clock some exercise time in even on the bad days.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible, the downfall is definitely harder to diagnose because for a long time doctors thought I was fine because I wasn’t symptomatic at the moment my vitals were taken. As it progressed it became painfully obvious to my doctors. The benefit was I still had time to deal with the diagnosis with my family and decide if and who I wanted to share the information with.

13. Regarding working and career:
I am a stay at home mom and have been since 2003, I volunteer a little less each year and that makes me sad. I loved being in the class room. I always planned on going back to work, I have to say it is harder to imagine what I will do and how I will go about it but I also cannot imagine limiting myself.

14. People would be surprised to know:
One of the big motivators to come all the way out of the ‘invisible closet’ is because I am on the wait list for a cardiac service dog!!!
I think people also would be surprised to know 2 of my 4 kids also have an invisible illness. Oh and my family drove 14 hours for me to go to the Center for Autonomic Disorders… who goes 14 hours to a doctor?

15. The hardest thing to accept about my new reality has been:
I have had a hard time slowing down. My personality and chronic illness don’t go well together. In my head I want to organize, workout hard, volunteer, do projects go to the park and have lunch with friends. Making the choice of what the priority is for that day, and really not even one on some days, can get me down.

16. Something I never thought I could do with my illness that I did was:
I clocked in 116 miles on my recumbent stationary bike for Invisible Illness Week last month!

17. The commercials about my illness:
I have a whole documentary  CHANGES: Living with Postural Orthostatic Tachycardia Syndrome. POTS is just one of many was Dysautonomia can surface.

18. Something I really miss doing since I was diagnosed is:
I still miss exercising the way I want to instead of the way my body will tolerate; I miss just walking the dog without wondering if I am risking an episode of non-sustained V Tach. Also going out certain places without fear; like to a concert (which I am planning to do soon) is scary. What if I pass out, what if I have a tachycardia episode it is a lot of worry.

19. It was really hard to have to give up:
Being able to ‘do it all’ in a day. I remember getting the kids ready for school, getting dressed, volunteering, working out, hitting the store making meals and hanging out with friends. It’s a slower pace now and never enough time or energy to do everything I want. I also can’t drive for 6 months after losing consciousness, that’s a LOOOONNNGGG 6 months!

20. A new hobby I have taken up since my diagnosis is:
I wouldn’t say I took them up because of my illness but I try and write as often as I can and I read read read! I love keeping track of my books at and discussing books with friends.

21. If I could have one day of feeling normal again I would:
Take the little kids to the park and play hard in the morning, have lunch and go shopping with Sierra all afternoon then meet up with my husband and friends for dinner, drinks and dancing!! (I really hope to have a good enough day for all of this soon)

Outside the Doctor’s Office

22. My illness has taught me:
If you feel something is not right with your body and you do not feel you are being heard or given medical information and support that fits how you feel keep looking. Don’t settle. I have also learned no matter how real your illness, no matter how obvious your symptoms someone, and maybe someone you love, will doubt you are really ill.

23. It bothers me when people say:
It bothers me when people ask questions from a place of doubt instead of curiosity.  ‘You can’t be that sick, you exercise so much’ or ‘you were fine last year (last month, last week)’or if I am having a bad day or week saying it’s because ‘You worked out or went shopping etc.. and should have rested when you had a good day.’ For some people I can never win.

24. But I love it when people:
I love it when people ask questions from a place of concern for me or curiosity about Dysautonomia. I also love getting calls, texts and playing Words with Friends, it cheers me up, makes me feel social. (Big props to my WWF peeps) I love a call for coffee or lunch, I love getting out of the house and if I can I will!

25. My favorite motto, scripture, quote that gets me through tough times is:
I did as much research as I could and I took ownership of this illness, because if you don’t take care of your body, where are you going to live?
Karen Duffy

26. When someone is diagnosed I’d like to tell them:
You will find a new normal

27. Something that has surprised me about living with an illness is:
That I am beginning to find a new normal.

28. The nicest thing someone did for me when I wasn’t feeling well was:
I am blessed to have a few.

My best friend having a natural balance to not treat me any differently but cut me some slack.

An old friend taking some time to catch up and be able to be concerned but still make a joke or two that lightened the weight of it all a little.

My husband explaining to me what Dr. Thompson told us; that my fatigue is not the same as when a healthy person is tired and that my body has a need to rest. Then he did the dishes…again

29. I’m involved with Invisible Illness Week because:
Dealing with this alone, for me, is not the option I thought it might have been in the beginning. I want people to know what is happening to me, why I might have to cancel plans and why I have so many limitations. I also want to let people know that Dysautonomia is very real and not many doctors are aware of what it is, or how to treat it. Awareness is crucial.

30. The fact that you are reading this list makes me feel
Validated and supported, really I couldn’t ask for more.