Posts Tagged ‘Orthostatic Hypotension’

Injectable Power Port for IV therapy to treat Dysautonomia

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

As much as I hate it when I read a blog post that starts with “So it’s been awhile…” or “Sorry I haven’t posted in a long time…” this is kind of that post.

I’ve been super busy. Okay not really, but I’d say super busy for someone who considers making lunch, checking the mail, and doing the dishes a pretty full day.

Okay kids gather round and I’ll tell you about the first week of having an Injectable Power Port for IV therapy to treat Dysautonomia…

Quick basics for those who are not familiar; a power injectable port is a small medical device that is just beneath the skin usually put in the upper chest, just below the collar bone, mine is on the right side and goes into my jugular vein. Medications can be given and blood can be drawn from the port. Ports are mostly identified with people receiving treatment in the medical area of oncology and hematology.

Dysautonomia patients can often opt for port usage for proactive treatment to combat frequent dehydration and elevate blood volume to hopefully avoid syncope (fainting) and the need for multiple IV treatments post syncope.

Okay, now back to me!

This is an image of the Smart Port power injectable port that is in me
I had no preference in the brand of port and left that to the
surgeon who performed the procedure

 

(BTW I am a total newbie at this so the terminology is new to me. This is my first few days with the port)

So it started with a call to my Dysautonomia Specialist. I had passed out again and had a hard time coming out of it. It was that syncope that wanted to take you over, you start to come to and sit up slowly and BAM your vision gets blurry and you go right back out. I had no issue getting the IV at the ER but in the past they have said no, or admitted me for observation instead of the IV my body was so thirsty for.

My specialist and I agreed it was time to be proactive with regular IV therapy but I wasn’t sure how I wanted to go about it. There are a few options.

  • You can just have a new IV done each time but my doc wanted the therapy three times a week so that was not a first choice
  • The PICC Line is the next option and has some huge pros. It isn’t a surgical procedure and they can be used for anywhere from 2 weeks to 2 months before needing to move location. The cons for the PICC Line were from people who have used them mentioning the inconvenience of having something sticking out from you at all times and you cannot get it wet (increased risk of infection) and the covering for it sometimes let water through.
  • The next option was a power injectable port. It is an out-patient procedure although sedated enough to take the edge off you don’t need to be put under and the port can last for many years. While accessed it does need to be covered but when not accessed the port is under the skin and though it can look like a small dome it is not as noticeable as having something like a PICC Line accessed all the time.

I went for the port which was what my specialist had wanted. Their office called it in and within 2 weeks I was scheduled for my port placement.

The procedure:

I was scared, like really scared. I am someone who would prefer to be knocked out for dental work let alone something being inserted in my neck/chest. When I got to the hospital they put me in my room and did some labs to make sure my clotting was up to par then I waited.

I passed the time reading Game of Thrones until my mind started to wander. Am I sick enough for this? Ugg I hate the train of thought when I admit I am too debilitated by my illness to do normal things, like shopping for clothes or make it from the car to the baseball fields where my sons play but I also know there are people much more debilitated than me. I battle for quality of life other people are battling for life.

Then they came in to wheel my bed off to the OR… ahhhh! I’ve changed my mind, forget it I am going home… Okay I was thinking it but I didn’t say it. They went over the procedure and we got started, well they got started, I just laid there.

If you are considering this procedure, as many Dysautonomia patients are, the worst part is the injection to numb you, it kind of feels like the dentist numbing you only maybe ten times as bad and in your neck (sorry being honest). All and all for a surgical procedure it was not bad. After 3 hours bed rest I was about to start the discharge process. Although I think when I watch movies where someone gets truth serum injected into their neck I might have some PSTD flash backs.

Me during the first 24 hours. A former plastic surgeon did my
port placement, I know you’re jealous ;)

I was so sore the next day I wanted to kick my doctor and every one of my spoonie peeps who said they loved having a port. By day 4 I wasn’t very sore at all, which was good because the nurse came to do my very first IV therapy. Now even with the port you have options as to what needle and how much nursing assistance you’d like and how much you feel you can do on your own.

This day 4 post-op before being accessed, the 22 gauge Huber,
and then accessed for the very first time
Me getting accessed and my first port lesson

 

I will have therapy M-W-F so I have opted to have a nurse come on Monday to access me (put the needle in and dangly IV connector and cover the area) and stay accessed until Friday. As of now the nurse will come on Friday to remove everything and I will be free of it until she (not being sexist, the company has 3 female nurses so it’s she) comes Monday to access it again. On the in-between days I do need to flush the port with saline and then heparin. I did the flush of the port with the nurse yesterday after my first IV therapy and today, my off day, by myself.

The big questions from fellow Dysautonomia peeps…
“OMGosh WILL YOU GET TO THE PART WHERE YOU TELL US IF IT WORKED???!!!”

I am only doing one bag Tuesday and Thursday of this week, my orders are up to 2 bags 3 times a week, so I am working up to finding my sweet spot right amount. I hoped to feel energetic after the bag was done. I didn’t. I was cold which led me to lay under a blanket on the couch which left me feeling tired. I also felt a bit fuzzy after standing up and moving to a better chair to unhook the IV and do the flushing. I will add that I didn’t sleep the night before.

A few hours later was dinner time. I made dinner, we ate, we (kiddos and I, hubby is out of town) cleared the table, and then I packed lunches for 2 of my 4 kiddos for summer session at school. Afterwards I sat down and realized I hadn’t taken a break leaning over the counter which I normally would have done.

However when I did orthostatic numbers that night I was just as all over the place as a regular good night with readings of my HR being 67 to 92 and BP from 139/80 to 119/75. Again, not “bad” number fluctuations in the world of Dysautonomia just that they are the same in fluctuation as I’d have a good evening before proactive IV therapy.

Next week I’ll do a bag and a half M-W-F and will hopefully have great things to report.

Want to know more about Dysautonomia click here

If you have comments or questions on anything I always read the comments posted. I will answer, even if its “I haven no idea” and reply so you can stop back to see the response or I think you can click something to see responses. I also love you more when you comment… it’s true.

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.