One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Monday, October 22, 2012

Revelations: Part 3 - Eduction Continued

I have not been forsaken.
You have not been forsaken. You are believed. You are supported. The Goddess and God are with you.

In the first part of this series, I was struck by how angry, bitter and miserable I had become feeling as I have about being forsaken. The revelation that I wasn’t opened my eyes to the different ways I had isolated myself with my anger and bitterness and even gave insight into how dysfunction in relationships prior to major life changes, whether it is death, illness (temporary or permanent), divorce or any other number of major life changes dictates the result of the relationship after the change occurs.

You are not misunderstood. You haven’t given enough education to be understood.
Teach and tolerance follows…and if not tolerance at least understanding and educated when decisions need to be made.

Part 2 focused on discussing the mechanism of Dysautonomia, one malfunction that I suffer because of Dysautonomia (B12 deficiency) and how that impacts my interactions with others. I also started giving out the code words I use my family and close friends to try to help them and myself better deal with the challenges dysautonomia presents as I try to maintain and rebuild relationships around me.

Dysautonomia is a complicated disorder whose physical impact has daily consequences.

Part 3 will continue to discuss the different types of symptoms that persons suffering from Dysautonomia can suffer from and I will highlight the symptoms that I am most plagued with, giving examples of how these manifest in my daily living. The information is from the Dysautonomia Information Network.

Dysautonomia Information Network

Postural Orthostatic Tachycardia is a syndrome. As such, there is a collection of symptoms that distinguish it. The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. Many of these symptoms, such as low blood pressure,* may present only after prolonged standing. Symptoms will vary from person to person. The following is a list of symptoms reported by patients. When possible, we have included the percentage of patients that research reports have experienced a given symptom
Symptoms presumed to be related to cerebral hypoperfusion:**
Lightheadedness  77.6 % (Grubb, 2000)
Fainting or near fainting 60.5% of patients report near fainting (Grubb, 2000)
Generalized weakness 50% (Low et al.)

Specific to my case, these are the top three symptoms that I suffer from. Sometimes, I simply have a feeling of my head being disconnected from my body, like I have taken some kind of cold medication. This lightheadedness is intensified when I have ear, nose, throat or bronchial infections. I tease that I probably couldn’t pass a road side sobriety test sober any more. It takes concentration and effort to not allow this type of lightheadedness take over.

There are really three types of fainting or near fainting that happens to me. The first is where I lose my vision. It feels like tunnel walls collapse from the outside in leaving me temporarily blind. This blindness can last for up to two minutes. My hearing is not affected by these episodes. I can hear Tony talking to me and cannot respond. Typically, I see the tunnel collapsing and then I immediately drop to the lowest possible position available. These are what I call slow moving episodes, meaning I have time to anticipate the safest place to fall and time to react. Tony, Sam or Alice can all intervene in these episodes because the develop slowly and my body language warns them of the impending issue.
The second type of fainting is fast and vicious. This type most often happens upon standing. I not only lose sight, I lose hearing as well. My body literally collapses. In these incidences when I am alone. I will wake to Alice snuffling my ear and licking my neck’s pulse points. One particularly long episode recently and I slowly woke to realize I was getting a doggy bath on any part of my body that was exposed. I am assuming that I was out longer than was usual. If Tony is around, I will wake to him quietly talking to me just to establish that I have returned to consciousness. These types of incidences cause extreme fatigue directly after the episode. My body feels heavy and my ability to respond is inhibited. These episodes will cause flue like symptoms afterwards. I will feel feverish and achy, sometimes from the bruising that will occur when a body hits the floor. I will spend several minutes, five to ten, on the floor allowing my heart rate to slow and my mind to clear from the fainting fog. These episodes are dangerous because of the possibility of physical injury. This year I suffered a dislocated shoulder from a fainting episode.
The third type of episode comes from coughing or laughing. Recently I was watching TV with the boys and started laughing hysterically; I then woke to find myself draped across Tony’s lap with him urgently talking me back to consciousness while Alice snuffled my ear. These episodes are more likely to happen if my body is already under physical stress, which is fighting an infection. These seem to be less predictable and are part of the reason why I prefer NOT to drive if possible.
Symptoms presumed to be related to autonomic overactivity include the following:**
Palpitations 75% (Grubb, 2000)
Tremulousness 37.5% (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)
Shortness of breath 27.6 % (Grubb, 2000)
Chest discomfort and/or pain 24.3 % (Grubb, 2000)

Because I have neurocardiogenic syncope, by definition I have palpitations or tachycardia episodes. Bear in mind my typical resting rate is between 95 BPM to 110 BPM. When I go tachycardic, my BPM can rise to 140 to 160 for short periods of time. This happens most often during sleep cycles. I also suffer from tremors of the hand. These correlate directly to the amount of fatigue I am experiencing and whether or not I have another physical stressor such as an infection. Sometimes this occurs while waking and is noticeable in the way my entire upper body beats with my heart, as if I am consciously rocking back and forth when in actuality my heart is pumping so fast it is moving my body.

Sudomotor symptoms include the following:**
Loss of sweating 5.3 % (Low et al.)
Excessive sweating 9.2 % (Robertson, 2000)
Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007).

I sweat a LOT. I now utilize prescription strength antiperspirants. Heat is a deadly thing for me. I tend to overheat quickly and am absolutely miserable in the spring and summer here in the South. This ties into my body’s inability to regulate my body temperature on a regular basis. I will suffer from profuse night sweats about once a month. Fevers are a weekly occurrence which means I suffer the stiffness and achiness that accompanies all fevers. The fevers are more frequent when my body is fighting infection; however, the night sweats and profuse sweating really follow no normal pattern. When I deliberately exercise I am not likely to sweat much at all, again a sign that my body cannot properly regulate my body’s core temperature.

Symptoms that may reflect dysautonomia:**
Delayed gastric emptying 23.7% of patients report gastrointestinal complaints, including bloating (Grubb et al., 1997)
Bloating after meals (Grubb et al., 1997)
Nausea 38.8% (Robertson, 2000)
Vomiting 8.6% (Thieben et al., 2007)
Abdominal pain  15.1% (Thieben et al., 2007)
Diarrhea 17.8% (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
Constipation 15.1% (Thieben et al., 2007)
Bladder dysfunction 9.2% (Thieben et al., 2007) (this may include Polyuria (Jacob & Biaggioni, 1999) (excessive urination)
Pupillary dysfunction 3.3% (Thieben et al., 2007) Pupillary dysfunction may or may not be responsible for some other reported symptoms, such as: Blurred Vision (Grubb, 2000) and Tunnel vision (Low et al.).

There are a lot of varying opinions about whether gastric issues can be directly related to dysautonomia. In my experience, Irritable Bowel Syndrome (IBS), nausea, vomiting, abdominal pain without any clear reason and constipation are all things I experience on a daily basis. My doctors have found that taking antacids have helped the nausea and vomiting. I can also testify that copious amounts of water have drastically helped the IBS and constipation. However, the abdominal pain comes and goes and in the past year has landed me in the hospital in so much pain I had to be sedated. Test concluded there was no cause that could be identified for the pain other than general swelling. Additionally, my entire condition took a significant turn for the worse when my gallbladder and appendix were removed. Both of which have their own long term impacts on the body.
Generalized Complaint symptoms:**
Fatigue 48% (Grubb, 2000) (which can be disabling) 
Sleep disorders 31.6% (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
Headache/migraine 27.6% (Grubb, 2000)
Myofascial pain 15.8% (Thieben et al., 2007) (characterized by regional muscle pain accompanied by trigger points)
Neuropathic pain 3% (Thieben et al., 2007)

I suffer from crippling fatigue. Abbye and Sarah are some of the few people outside of my immediate family that have seen the fatigue come and set in. In Abbye’s case, she and Will had come for lunch and a chat and literally watched the energy drain out of my system, by the time they took their leave, I was so fatigued that seeing them out was beyond my ability. Sarah has seen this process at her own home when I go for visits. Today was a good example of how quickly the fatigue can set in. One minute I was fine, the next I was passed out on the couch simply unable to do anything other than try to nap and recuperate enough strength to eat dinner and get ready for bed.
Unfortunately, these bouts of fatigue seriously mess with my sleep wake schedule. I try not to nap if I can help it OR try to wake very early (5 or 6 AM) and then nap from 7 or 8 AM to 1 to 2 PM, usually this gives my body time to have the fatigue return enough for me to need sleep at bed time. Tonight, I ended up crashing around 4:30 PM and sleeping until 7:30 PM which seriously inhibits my ability to sleep at normal times.

Further, as previously mentioned, when I do sleep I can have one to two tachycardic episodes while I sleep. Where for not reason my heart rate will run as fast as 160 BPM for two to five minutes at a time, this sleep exercise interferes with my body’s ability to rest and recuperate which further contributes to my crippling fatigue.

Migraines can come and go; however it is the myofascial and neuropathic pain that I have the most of. There days when it simply feels like I volunteered to be run over and then backed up by a bus. These pains are all over and accompanied with a the pleasant side affect of small bruises that persist.
Other symptoms reported in research that are not categorized above include:
Dizziness (Grubb, 2000)
Tachycardia (Grubb, 2000)
Exercise intolerance (Grubb, 2000)

I am hoping that I will be able to tolerate some exercise in the future as things calm down as exercise is one of the best ways to minimize these issues. As it stands, exercise just isn’t something I can do alone.

Clamminess (Grubb, 2000)
Anxiety (Grubb, 2000)
Flushing (Grubb, 2000)

I suffer from Anxiety and Post Traumatic Stress Disorder (PTSD) from my abusive childhood. Given that, however, studies have shown that for dysautonomics that experience fainting and near fainting episodes, they suffer from nearly twenty-four hours of increase anxiety. The belief is that the fainting ignites the flight or fight response and since there is no resolution for the initiation of the responds, it takes the body much longer to come off that type of physiological response. For me this is like taking my normal level of anxiety and then amplifying it by 100%. This has the added affect of tripping off my PTSD which further elevates my PTSD and creates a pretty vicious cycle.
Postprandial hypotension (Grubb, 2000) (low blood pressure after meals) 
Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color) 
Intolerance to heat (Grubb & Karas, 1999)

I have already discussed this particular issue.

Feeling cold all over (Grubb & Karas, 1999)
Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)

The same for clinically low blood pressure, for it is my body’s inability to adjust my already clinically low blood pressure properly that causes near fainting and fainting spells.

Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)

This has been extensively discussed in Revelations: Part 2 of ?

Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)
Cold hands (Low et al.) (and often feet & nose)
Hypovolemia (Low et al.) (low blood volume)
Chills (Low et al.)
High blood pressure (Low et al.)
Hyperventilation (Low et al.)
Numbness or tingling sensations (Low et al.)

I suffer from this off and on about three to four times per month. Other than annoying, it gives me some indication how well, or not, my blood pressure system is functioning.

Reduced pulse pressure upon standing (Low et al.)
Low back pain (Mathias, 2000)

I suffer from this constantly. It is similare to having a wrenched low back without the possibility for relief.

Aching neck and shoulders (Mathias, 2000)
Noise sensitivity (Stewart, 2001)
Light Sensitivity (Stewart, 2001)
Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)

Noise and light sensitivity often accompany the migraine episodes although there are days when I simply retreat to my room because even the television is too much noise for me to tolerate.

The above are symptoms reported by POTS researchers.
Other symptoms sometimes reported by POTS patients include:
Arrhythmias (irregular heart beats)
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)

This is a major problem for me. My body is continually finding new and inventive ways to be allergic to medications that I have successfully taken in the past and medications that I have been ordered to take to combat some specific issues my dysautonomia has created.

Easily over-stimulated 
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse)

This is a new avenue of exploration for me. I have become convinced that some foods do cause horrible problems with my dysautonomia and isolating exactly the ingredient that is causing problems is more than a bit challenging. Some experts recommend an organic only diet which I would love to convert to IF I could afford it.

Irregular menstrual cycles
Loss of appetite
Loss of sex drive
Muscle aches and/or joint pains
Swollen nodules/lymph nodes

My fingers and feet sweet and my lymph nodes and nodules are a constant state of swollen. These simply indicate the irritation my body feels over combating this disorder.

Polydipsia (excessive thirst)
Weight loss or gain

I continue to drink copious amounts of water and gain weight. The hope is that once my overall health is stabilized  changes can be made to my diet and my exercise regime in the hopes that taking some excess weight off will assist in limiting current symptoms.

           Feeling detached from surroundings

When I came across this particular issue, I was really relieved. I had become to think there was something seriously wrong with me. However, knowing this is part of the disorder I suffer from is helpful. Additionally, when you add into this the PTSD trauma and Anxiety, I find that this type of detachment is even more pronounced. I will discuss  this further in future blogs.

            Restless leg syndrome

POTS symptoms can vary from day to day. They tend to multiply and become exaggerated upon upright posture. Blood flow and blood pressure regulation are also abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident (Stewart & Erickson, 2002). Some patients do report symptoms occurring while sitting or lying down. Heat, exercise and eating can exacerbate symptoms. Women sometimes report an increase in symptoms around menstruation.
If you are suffering from some of the above symptoms, you need to seek professional help. Please do not attempt self-diagnosis.

*Some of the above symptoms are specifically related to orthostatic hypotension, traditionally defined as an excessive fall in BP (typically > 20/10 mm Hg) on assuming the upright posture. Not all patients will experience a drop in blood pressure upon standing. Some physicians define orthostatic hypotension as a separate entity from POTS.

** The hypothesized origin of symptoms and their frequency came from the "Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience" by Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007.
I will have one more Revelation entry that focuses on the PTSD and Anxiety component of my issues.
1. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia    
          Research Foundation Patient Conference. Minneapolis, Minnesota.

2. Grubb, B. P., & Karas, B. (1999) Clinical disorders of the autonomic nervous 
 system associated with orthostatic intolerance. Pacing and Clinical 
 Electrophysiology, 22, 798-810. 
 Full text: 

 3. Grubb, B. P., Kosinski, D.J., Boehm, K., & Kip, K. (1997). The postural 
 orthostatic tachycardia syndrome: a neurocardiogenic variant identified 
 during head-up tilttable testing. Pacing and Clinical Electrophysiology, 
 20, (9, Pt. 1), 2205-12. PMID: 9309745 [PubMed - indexed for MEDLINE]

 4. Jacob, G., & Biaggioni I. (1999). Idiopathic orthostatic intolerance and postural 
 tachycardia syndromes. The American Journal of the Medical Sciences, 
 317, 88-101. PMID: 10037112 [PubMed - indexed for MEDLINE]

 5. Low, P. A., Oper-Gehrking, T. L., Textor, S. C., Benarroch, E. E., Shen, W.   
 K., Schondorf, R., Suarez, G. A., & Rummans, T. A. (1995). Postural 
 tachycardia syndrome (POTS). Neurology, 45, (4, Supplement 5), S19-25.
 PMID: 7746369 [PubMed - indexed for MEDLINE]

 6. Mathias, C. J. (2000, July). Other autonomic disorders. National Dysautonomia 
 Research Foundation Patient conference. Minneapolis, Minnesota.

 7. Robertson, D. (2000, July). General description of the autonomic nervous system  
 and orthostatic intolerance overview. National Dysautonomia Research  
 Foundation Patient Conference. Minneapolis, Minnesota.

 8. Sandroni, P., Opfer-Gehrking, T. L., McPhee, B. R., & Low, P. A. (1999). 
 Postural tachycardia syndrome: clinical features and follow-up study. Mayo 
 Clinic Proceedings, 74, (11), 1106-1110. 
 PMID: 10560597 [PubMed - indexed for MEDLINE]

 9. Stewart, J. M., (2001, Spring/Summer). About being young and dizzy: overview  
 of dysautonomia. National Dysautonomia Research Foundation Youth  
 Network Fainting Robins Newsletter, "The Young and the Dizzy", 1, 1-2.

 10. Stewart, J. M., & Erickson, L.C., (2002). Orthostatic intolerance: an overview. 
 In Alejos, J. C., Konop, R., Chin, A. J., Herzberg, G., Neish, S. (Eds.). 
 emedicine Journal, 3, (1). 

11. Thieben, M. J., Sandroni, P., Sletten, D. N., Benrud-Larson, L. M., 
  Fealey, R. D., Vernino, S., Lennon, V. A., Shen, W. K.,  & 
  Low, P. A., (2007).  Postural orthostatic tachycardia syndrome: the 
  Mayo Clinic experience. Mayo Clin. Proc. 82, (3), 308-313.
  Full Text  

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