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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.) 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) 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). 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.). 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) Other symptoms reported in research that are not categorized above include: Dizziness (Grubb, 2000) Tachycardia(Grubb, 2000) Exercise intolerance (Grubb, 2000) Clamminess (Grubb, 2000) Anxiety (Grubb, 2000) Flushing (Grubb, 2000) 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) 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) Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall) 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.) Reduced pulse pressure upon standing (Low et al.) Low back pain (Mathias, 2000) Aching neck and shoulders (Mathias, 2000) Noise sensitivity (Stewart, 2001) Light Sensitivity (Stewart, 2001) Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999) 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) Easily over-stimulated Feeling full quickly Feeling "wired" Food allergies/sensitivities (some foods seem to make symptoms worse) Hyperreflexia Irregular menstrual cycles Loss of appetite Loss of sex drive Muscle aches and/or joint pains Swollen nodules/lymph nodes Polydipsia (excessive thirst) Weight loss or gain Feeling detached from surroundings 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. For more information about POTS, please view the additional articles, resources and links References 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: www.ndrf.org/PDF%20Files/disorders.PDF 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). http://www.emedicine.com/ped/topic2860.htm 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.
I had a skin biopsy in August for small fiber neuropathy - results positive. I later found out that only sensory nerves were looked at, but that it's possible for autonomic nerves to be looked at too. So Dr. #2 does a second biopsy in February and the sample in sent to lab #2 which has the technology to look at both. Dr. #2 calls me today - everything was NORMAL - both sensory and autonomic nerves. WHAT? The first lab reported significantly low nerve fiber density - the second says everything is perfectly normal? I know my nerves didn't grow back in 6 months. I assumed lab #2 would confirm the sensory findings- just wanted to see if there was also autonomic nerve involvement. I am totally confused - SFN very nicely explains the crushing leg pain and burning feet and I figured if sensory nerves were involved, there was a good chance autonomic ones were affected too, which might nicely explain the POTS. Most of the testing I have had done since the first biopsy has involved looking for diseases that cause neuropathy (including the dreaded lip biopsy, from which I am still numb)... because I supposedly have neuropathy. My whole investigation for the past 6 months has been based on that first pathology report! Dr. #2 told me not to dismiss the first test (good lab, symptoms fit etc.), but this is hard to ignore... I'm thinking it's more likely that lab#1 miscounted (undercounted) the number of nerves than that lab 2 counted nerves that weren't there. I know in the end none of this may affect the outcome (finding the cause, getting treated), but I found a certain PEACE in having a piece of the puzzle and having tangible results that explain some of what I feel everyday. I just had to dig deeper, didn't I? I feel like the results cancel eachother out and the only thing I can think to do is go back to Dr.#1, be re-tested and let test #3 be the tie breaker. I feel like as hard as I try I keep hitting road blocks. I know I'm not alone in that. Can anyone think of anything that might explain what may have happened here?
Hi All! So over the last couple of days my body has decided to throw a new baffling symptom in my lap. I woke up suddenly one morning with this horrible burning, stinging sensation under the skin in the back of my thigh. I mean it is so painful I cringe having anything touch it. I went to ER and they thought maybe shingles? went to GP today and she said not because it is not red or swollen...she is actually stumped. I have seen many posts about neuropathy and wonder if this could be that? does it usually start suddenly? My GP just wants to wait and see what happens with it so I am kinda at a loss of what to do....all I know is it is really uncomfortable!!! Anyone experience anything like this?? Bren