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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.
Hi Everyone, I wanted to give an update on my migraines. I posted last fall about my struggle with daily migraines (http://forums.dinet.org/index.php?/topic/24440-migraines/). Although I do still struggle with them, I have started a couple of medications that have provided some relief. I am taking amitriptyline again. I had wanted to avoid it for as long as possible because it interferes with my sleep, but when the migraines never would go away, I knew I had to start a preventative med again. The amitriptyline is helping. It doesn't completely take the migraines away, but it lessens them. I still always have a little bit of sensory overload, and if I push myself too hard, then the migraines get worse. Sometimes even with pacing myself I still get migraines. But it's not a bad migraine every day like it used to be. My doctor also started me on a new medication for migraines to use as needed. It is called Frova, and she said it is especially helpful in females who get migraines. I have tried it a few times, and it is very helpful! It prevents the migraine from getting any worse. A big help! Before starting amitriptyline I asked my doctor about checking my serum serotonin level. Looneymom told me that when her son had daily headaches and when they tested his serum serotonin, it was 0! I had never had my serotonin level checked, so I was curious what it might be and if I could have a low level that was causing headaches. My doctor ordered the test, and I had it checked before I ever started amitriptyline. My level was 310. The normal range, according to my lab, is 56-244. I was quite surprised to see it high since my blood work is usually right smack in the middle of the normal range. Does anyone know what might cause a slightly elevated serotonin level? My doctor wasn't sure what to think, but she joked with me that I must be really happy! It isn't high enough to be concerned about something like carcinoid syndrome. We will be checking my serotonin level again next month to make sure it isn't continuing to climb. I was a little nervous about taking the amitriptyline since my serotonin is already elevated, but the doctors think it will be okay. And it does help to lessen my migraines, which is very important right now. If you have any thoughts on elevated serotonin and dysautonomia, I'd like to hear them. Thanks! Rachel
Hello, I've been battling with migraines almost daily for a month now and it's getting really difficult. Meds like Zomig and Axert just make me feel worse so we're going the preventative route (along with the fact that they are daily). I've been on Toprol for 2 weeks now and it doesn't seem to be helping. (I didn't realize that Toprol was prescribed as a migraine preventative until now). I'm thinking of trying Topamax next but wondered if any of you have had experiences with this. I hear it can make you really tired. Also, Amitriptyline is also an option. Any thoughts? Thanks! Lisa
This is a very good 2004 article from The CFIDS Chronicle written by Dr. Alan Pocinki discussing how Joint Hypermobility relates to Chronic Fatigue Syndrome (or CFIDS), Dysautonomia, Migraines, Irritable Bowel Syndrome, Interstitial Cystitis, Vulvodynia, etc. I searched the forum, but I didn't see this article previously posted. http://www.cfids.org...mer-feature.pdf