It was a case of hives.
I’m not sure if it was related, but for about 2 weeks, I had been nauseous off and on; there had been several instances where I was overcome with it, and barely made it to the bathroom before throwing up. And I kept getting tightness in my chest that could only be relieved by drinking water slowly. Then one Saturday I woke with hives. By late afternoon my hives had hives, and nothing could relieve the tightness in my chest. I have allergies to iodine, shellfish and bees/wasps, so thought I knew the signs. I had been taking Benadryl all day, but with no improvement in the hives. When the tightness in my chest started making breathing difficult, Wade insisted on a trip to the ER.
Since we live in the country, it was a 30-minute drive to the hospital, and by the time we arrived I was wheezing. You have all seen the overcrowded ER’s portrayed on TV and in movies. Well, this one didn’t look much different. But, evidently when you are gasping for air you move to the front of the line. Before I knew what was happening, I was in a room surrounded by people with needles and tubing. The last thing I remember was Wade being pushed out the door insisting “but, she can’t breathe”; and a nurse responding “we know that sir, that is why you have to leave”.
Within 20 minutes the IVs and oxygen were doing their job and I was resting comfortably. They let Wade join me in the room, and we settled back to watch TV. I assumed they would monitor me for a couple of hours then send me home. I assumed wrong.
There is nothing more frightening than having the doctor return and announce that the EKG was abnormal, so I would need to be admitted to the cardiac care unit. I could swear the tightness in my chest was not my heart, but…
The next morning, Doctor C was there to check on me. She ordered several tests that could not be completed until Monday, so another 24 hours before I could hope to go home. Since I was on a heart monitor I wasn’t allowed to leave the room, which was small and boring. I finally convinced Wade to go home (he had refused to leave and slept in the recliner that night) to pack my laptop and something more comfortable than a gown perpetually exposing my backside. We set the laptop on the bed table and spent the day watching Instant movies from Netflix.
We decided to look at this positively. I was certain it wasn’t my heart, and maybe, just maybe, this would finally point to the underlying cause of the neuropathy. I was in the hospital a total of 5 days. Three tests were run Monday, and none of them showed heart or lung problems. But I remained hospitalized, due to events Monday and Tuesday.
I started to feel like one House’s patients. On Monday, I woke with both eyes so red there was no white. They burned so badly I couldn’t stand any light – period. We covered the window with a blanket to keep it as dark as possible, and when I left the room for testing, I covered them with layers of wet washcloths. I went through 30 vials of eye drops in one day – I typically used 2-3 vials a day. Blood work gave no answers, and then Tuesday I started coughing up blood. More blood work. Still no answers. So, I was placed back on prednisone and more tests were scheduled for Thursday. The prednisone did the trick, as both eyes and cough cleared up by Wednesday morning.
Finally after Thursday’s tests still showed good heart and lungs, I was released with a prescription for prednisone, and no answers about what happened, or what caused it.
I renewed my efforts to find my own answers. Several google searches later I was reminded of the Autonomic Testing Lab. With the time that had elapsed since my first appointment with Doctor C, I had forgotten that was my original mission. I expanded my research to include not just SFN, but the other disorders tested by the Autonomic Testing Lab:
- Complex regional pain syndrome (CRPS)
- Small fiber peripheral neuropathy
- Generalized autonomic involvement
- Syncopal and presyncopal symptoms related to:
- Vasovagal syncope
- Orthostatic intolerance
- Postural orthostatic tachycardia syndrome (POTS)
- Grade III orthostatic hypotension
- Grade IV orthostatic hypotension
- Delayed orthostatic hypotension
- Orthostatic hypertension
- Supine hypertension – orthostatic hypotension
- Cerebral syncope – decreased intracranial velocity without peripheral hypotension
I ruled out CRPS, since that appeared to originate with an injury. I already knew the symptoms for SFN. Some of the dysfunctions seemed to relate to actual clinical findings only. That left Generalized Autonomic Involvement, Orthostatic Intolerance, POTS, and Orthostatic Hypotension.
I’m still not sure my understanding is clear, but what I took away from my reading is: Orthostatic Intolerance is a subcategory of Autonomic Dysfunction, and an umbrella term for many conditions. POTS and Orthostatic Hypotension are both forms of Orthostatic Intolerance.
One of the better descriptions of Autonomic Dysfunction I found is:
Dysfunction of the autonomic nervous system (ANS) is known as dysautonomia. The autonomic nervous system regulates unconscious body functions, including heart rate, blood pressure, temperature regulation, gastrointestinal secretion, and metabolic and endocrine responses to stress such as the “fight or flight” syndrome. As regulating these functions involves various and multiple organ systems, dysfunctions of the autonomic nervous systems encompass various and multiple disorders.
And the best description of Orthostatic Intolerance I found is:
Orthostatic intolerance is a confusing topic.
No kidding !
There was also:
Orthostatic intolerance encompasses any condition with blood flow, heart rate, and BP regulation inadequacy that are most easily demonstrable during orthostatic stress but may be present in all positions. Under such circumstances, orthostatic intolerance may be the most salient finding but is only the most obvious manifestation of a more widespread impairment in integrative neurovascular physiology.
Is that any clearer? Not to my gabapenten-challenged brain. The descriptions for POTS and Orthostatic Hypotension reached the limits of my ability to understand. The only thing I understood with certainty was that they all had something to do with heart rate and blood pressure.
What did surprise me was the many symptoms that possibly applied to me. Things I had not brought to Doctor C’s attention because I thought they were just side effects of meds and/or aging. Others I had brought to her attention, with no immediate diagnosis. Some of them were:
- Drifting to the right or left when walking
- Often appears to be “clumsy” or excessively cautious when climbing stairs, reaching for an object, etc. – I have been very cautious on stairs, but it surprised me to see this as a symptom of Autonomic Dysfunction.
- Decrease in (or absence of) lubricating tears in the eye
- Blurry Vision – I had associated this with the meds and dry eyes
- Inability to concentrate or remember (frequently referred to as “brain fog”). Cannot focus on more than one activity at a time. Memory recall deficits in long and short term memory. Improves with lying down and resting. This had been a concern since the first visit to Doctor C. What I found surprising was the statement that it improves with lying down and resting. Surprising because I had already found that by taking a nap early in the afternoon, I was able to focus and concentrate better later in the day. If I didn’t take a nap, I was worthless the remainder of the day. When I wasn’t traveling, I always took an early afternoon nap. When I was traveling, I typically had to quit by 4:00 because I couldn’t make sense of anything I was doing.
- Difficulty finding the right word: This statement really surprised me. I have called it “grasping for words”, and had long ago given permission to friends and family to finish my sentences for me. Again, I assumed this was a side effect of the meds.
- Speech disturbances: Inability to finish an expressed thought, loss of train of thought, “spoonerisms”, especially if up and about for 2 hours or more without lying flat and resting: This sounds very similar to the description above, but both descriptions were posted in the same article, so there must be difference. To me it still sounds like my description of ‘grasping for words’.
- Insomnia and Sleep Disorders
- Excessive fatigue
- Muscle and generalized weakness
- Nausea / Vomiting: This had plagued me for 2 weeks prior to the hospitalization. There appear to be both chronic and acute forms of Autonomic Dysfunction, so I wondered if it was an acute attack that caused the hospitalization.
- Excessive gut motility leading to chronic diarrhea: This has been a chronic problem since my colon was nicked during one of the endo surgeries, but was worth listing with the other symptoms.
- Frequent need to urinate at night, trouble holding urine, urinary retention
- Noise sensitivity. Loud or beating sounds can cause presyncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds: I am extremely sensitive to loud bass. I can’t say it causes presyncopal episodes, but I feel it through my entire body, bringing on waves of nausea.
- Noise in ears: Now, this one was surprising. I have tinnitus – the kind that tends to ebb and wane with my pulse. But, there is another noise I have only in my right ear. It is similar to a crackling sound; and I only get it when I am resting. I haven’t talked to any doctor about it, because it seemed a small concern, but now I wonder.
- Inability to tolerate changes in temperature: Another surprise – I thought that was just the SFN.
- Chest pain or pressure (discomfort): No pain, but there was the ‘tightness’ problem I experienced the 2 weeks prior to the hospitalization.
So, there it is. Out of 70 possible symptoms of Autonomic Dysfunction and/or Orthostatic Intolerance, I have 15 chronically, and 2 that precipitated my hospitalization. Like I said earlier – I don’t have every symptom, and maybe the ones I do have are simply coincidence, side effects of the meds, or just simply getting older.
But, two documents I found in my search led me to believe Autonomic Testing was appropriate:
- AETNA Insurance Company Statement of Policy: – Clinical Policy Bulletin: Even as conservative as insurance companies are, Aetna Insurance lists Autonomic Testing as “…medically necessary for use as a diagnostic tool…” for eight disorders – SFN being one.
- Practice Parameter: Evaluation of distal symmetric polyneuropathy – Published online by the American Association of Neurology 12/3/08: I discovered this article on December 3rd, the same day it was published and just in time for the follow-up with Doctor C. Among the recommended diagnostic tests is Autonomic Testing.
Before the follow-up with Doctor C, I had my annual visit to the GYN. He has always taken more of an interest in my overall health than simply my GYN needs. I’m not sure if that is because he was a friend of my employer, or simply because that is his style. It doesn’t matter. I like it.
So, as was typical of my appointment with him, we spent about 20 minutes going over any new problems since the last visit. This was the first time he had seen me use the cane, which was an obvious point of discussion. When I asked what he thought of the idea that endometriosis may be compressing the nerve, he didn’t think that was a possibility. He was fairly certain that since he had refused any more estrogen refills, the endo wouldn’t have an opportunity to grow. He did, however, believe scar tissue was a very strong possibility. And, since he had already told me my abdomen was like a war zone and he would recommend no more surgeries, scar tissue was something I would have to live with. Later, when I obtained a copy of my medical records, he had even indicated the same in his notes. So, there I had one answer out of the way. The cane will probably be my companion for life.
Now, all I needed was the recommendation to the Autonomic Testing Lab and I was sure I would have the other answers. I contemplated the best way to approach the idea with Doctor C. I have heard that some doctors take offense at what they perceive as patients diagnosing themselves. But, I finally decided I was the patient. I had lived with my declining health for over a year, and I needed answers. I needed to be healthy again. So, I took the statement from Aetna the New Practice Parameters published by the AAN, an article on Autonomic Dysfunction and one on Orthostatic Intolerance. Realizing she wouldn’t have time to read every page, I highlighted the paragraphs and/or symptoms that I wanted to discuss.
I made the wrong call. She was not happy, wouldn’t even look at the documents, said I had no symptoms of Autonomic Dysfunction and that all my tests from the hospital were normal. Then she closed the door on the discussion by telling me to get on the exam table. She finished the physical exam and left the room.
While I was getting dressed she knocked on the door to say there was something she forgot to discuss with me. My insurance company was refusing to pay for the last 2 days in the hospital. She wanted me to be aware of it because I would probably receive a statement from them, but I could ignore it since she was dealing with it. She went on to say that she couldn’t understand their refusal. She had kept me hospitalized for those 2 additional days because my heart rate was irregular…
…she stopped, walked over to the chair where the documents were laying, picked them up and said she would read through them and be in touch. Her nurse called early the next week to tell me that Doctor C wanted to schedule me for Autonomic Testing.
I had less than a week to wait, but it was a very long week.
Back t0: The Beginning of the End