People in Hell Want Ice Water But Do They Get It? This is Dysautonomia!

Ice Water By the Bed This is Dysautonomia DSC_0005

If you’ve ever read some descriptions of hell you will soon recognize the recurrent theme, i.e. a thirst that can never be quenched, hunger that can never be satisfied no matter how much one eats; a sense of eternal torment.

There is no mistaking now that Dr. Slow-as-Molasses is no longer acting in my best interest, as he has plastered his unequivocal lack of support on the Patient Portal. I read it early this morning having had the rude awakening of more of the same dysautonomic symptoms, and then logging on and reading this BS from him sure didn’t help matters.

The pen is mightier than the sword, and in a blithe little paragraph this doctor took it upon himself to leave me in a state of eternal thirst, fatigue, queasiness, and generalized agony when he could easily have made a different decision. Well, two can play that game, and I’ll bet I have a much better case to make. Yup, it takes a big man to take out your passive-aggressiveness on a disabled woman of 5 ft. 2. What a weasel.

I’m sure the Emory peanut gallery is pleased that he decided to become a company man and there is much slapping on the back and high-fiving going on behind the scenes, but his “reasons” for this refusal are no leg to stand on.

In his written message he stated that;

“As promised, I did speak with Daria (from Gentiva) at length. Unfortunately, we agree that based on your current status, there is not a HHN service that is appropriate for you at this time since you do not require any skilled nursing services based on anything they observed at any of their visits, or anything that came up during you(sic) recent visit with me.

She does recommend an aide/CNA that the social worker was working on.

I would also stongly recommend that you consider an assisted living or nursing facility where you could have more assistance, if a family member cannot come to stay with you.”

Apparently this was posted on March 3rd at 2:45 PM. I didn’t get an email notification until much later. By the way, I spoke with Daria and his account of the conversation was not entirely accurate. She actually wanted me to be recertified but could not do anything without him to write the plan and since he failed to give her one, it didn’t happen. Unlike Dr. Do-Little, she wants to see me receive care in my home and not further traumatized by being ripped away and whisked off to some facility where I could be further victimized. She’ll gladly work through another doctor now. I have a few choice words that would make a sailor blush regarding his “strong recommendation”. Hmm. How convenient for him! Great way to get out of doing his job. Clearly he could care less about me, allowing me to suffer since I got out of Piedmont in late November, untreated for this condition. 

Well since he controlled the entire conversation when I went to see him with his silly visual aid and telling me how much he didn’t support me, and take my symptoms seriously, striking through a good portion of the list of my priorities, then of course he “couldn’t” find that I need skilled nursing services.

He was trying so damn hard not to find it (the criterion for skilled nursing and impetus for treating the Dysautonomia). If he’d put as much effort into finding it as he has into dodging it we might actually have made some headway in treatment and how I’m feeling by now! As a long-time patient advocate I can tell when a provider is soft-peddling the criteria for a service so that he/she won’t have to authorize it. They know just how to tank it when they want off the hook.

In an act of sabotage, he used home healthcare’s very minimal BP readings (from over a month ago) as an excuse to say that since the low BPs for the most part didn’t show up in those taken about 2 times a week by home health (and in only one position) there was no evidence (as though the Piedmont records expired). And what’s shittier still, he’d admitted when I saw him in the office the other day that these two sets of measures were not comparable.

Other than a research setting hospitalization records are the most rigorous form of documentation to evaluate blood pressure, and what’s more, I had also sent him the photos of my purplish feet (see below). It was the same day that he wrote me back saying “OK, I’ll do it” and signed his initials below, then about 10 days later did a complete reversal of that promise.

For those who aren’t familiar with this phenomenon, this is blood pooling in the lower extremities. This is also referred to as acrocyanosis.

Other symptoms of Dysautonomia besides, low blood pressure, blood pooling, syncope/near-syncope, include but may not be limited to;

* Joint pain

* Muscle aches

* Myofascial pain (of connective tissue)

* Neuropathic pain (nerve pain)

* Hyperreflexia (abnormally increased reflexes)

* Generalized weakness

* Restless leg syndrome

* Numbness

* Tingling

* Palpitations

* Shakiness

* Seizure-like activity

* Central sleep Apnea

* Hyper or Hypoventilation

* Fatigue

* Light sensitivity

* Sound sensitivity

* Easily overstimulated

* Dysequilibrium

* Exercise intolerance

* Intolerance to heat and/or cold

* Chills

* Whole body feeling cold

* Cold hands, feet, and/or nose

* Need for 12-15 hours of sleep

* Hypovolemia (low blood volume)

* Narrowing of upright pulse pressure

* High BP

* Drop in BP while standing

* Cognitive impairment (brain fog word finding/recall)

* Chest discomfort and/or chest pain

* Tachycardia

* Bradycardia

* Disordered Sweating

* Clamminess

* Dizziness

* Physiologic Anxiety (Adrenergic-based)

* Flushing

* Loss of Apetite

* Weight loss or weight gain

* Feeling full sooner than normal

* Constipation

* Diarrhea

* Delayed Gastric Emptying (Gastroparesis)

* Bloating

* Low blood pressure after meals

* Nausea

* Vomiting

* Excessive Urination

* Urinary urgency

* Urinary retention

* Irregular menstrual periods

* Loss of sex drive

* Blurred vision

* Tunnel vision

* Pupillary dysfunction

I can see where doctors who don’t bother to read the literature in any depth might make the mistake of thinking their patients who present with alot of these symptoms are merely over-concerned or hypochondriacal, but make no mistake about it, these are all legitimate parts of a number of Dysautonomic syndromes.

Some people have no symptoms that they’re aware of and still have Dysautonomia, but when somebody has a large number of these symptoms and they are disabling why make them suffer needlessly when there are things that doctors can do to help their patients have better quality of life and not to feel like they wish they were dead?

In an article on syncope written at the Cleveland Clinic it states that at 1 year there was between 18-33% chance of mortality in those with syncope of cardiac etiology, 0-12% for non-cardiac syncope, and 6% chance of death with syncope of an idiopathic nature.

While these statistics are not high, I for one would not like to be in that unlucky group that did die in a freak accident upon fainting or near-fainting.

Dysautonomia can be either primary or secondary to another underlying condition such as Multiple System Atrophy (or MSA) .

In addition to POTS, there are a number of  other types of Dysautonomia listed on Dysautonomia International‘s website.

Monday is the first of the tests that were ordered by Dr. V; the first part of the Gallium Scan where they inject the radioactive isotope. Then on Wednesday they’ll do the scan itself. This may tell me whether this is being caused by the progression of my Sarcoidosis. It really is about time they got on the stick with these tests to get to the bottom of this disease.

Right now I’m having this heart pressure I get sometimes that seems to press up into my neck and head. I’m becoming overheated and sweating around the base of my skull. I have a kind of strange sweating pattern. Part of me can be sweating while another part is not or even cold. I wish it weren’t the weekend so I’d hear as to when my pulmonologist is going to get things moving again. The nurse got back to me but had to get an emergency call and it was late in the day, so she was not able to give all my information to him and get confirmation yet. This has to be treated, no ifs, ands, or buts. It seems to be getting worse again into one of its acute clusters. That’s when things start to get hairy.

I’m also going to need that referral to Vanderbilt initiated as soon as possible. While we have plenty of proof that it’s some type of Dysautonomia, Vanderbilt can get more specific with their testing and clinical assessment.

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