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What is POTS !!!!!!!!

What is Postural Tachycardia Syndrome?

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

Doctors aren’t sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS.  Current thinking is that there are a number of mechanisms.  Some individuals have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and many individuals with POTS have significant deconditioning.

Is there any treatment?

Therapies for POTS are targeted at relieving low blood volume or regulating circulatory problems that could be causing the disorder. No single treatment has been found to be effect for all. A number of drugs seem to be effective in the short term.  Whether they help in long term is uncertain.  Simple interventions such as adding extra salt to the diet and attention to adequate fluid intake are often effective. The drugs fludrocortisone (for those on a high salt diet) and midodrine in low doses are often used to increase blood volume and narrow blood vessels. Drinking 16 ounces of water (2 glassfuls) before getting up can also help raise blood pressure. Some individuals are helped by beta receptor blocking agents. There is some evidence that an exercise program can gradually improve orthostatic tolerance.

What is the prognosis?

POTS may follow a relapsing-remitting course, in which symptoms come and go, for years. In most cases (approximately 80 percent), an individual with POTS improves to some degree and becomes functional, although some residual symptoms are common.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other Institutes of the National Institutes of Health (NIH) conduct research related to POTS and support additional research through grants to major research institutions across the country. Much of this research focuses on finding better ways to prevent, treat, and ultimately cure disorders such as POTS. NINDS-funded researchers are investigating if low levels of the hormone aldosterone contribute to low blood volume in individuals with POTS, and if high levels of angiotensin II, a peptide that helps regulate blood volume, leads to decreased adrenal sensitivity.  Other NINDS-funded research is investigating the hypothesis that POTS is a syndrome of different subtypes, with different underlying mechanisms.  Additionally, the NINDS funds the Autonomic Rare Diseases Consortium to further understand disorders such as orthostatic hypotension and hopefully alter the course of disease.

NIH Patient Recruitment for Postural Tachycardia Syndrome Clinical Trials

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National Dysautonomia Research Foundation
P.O. Box 301
Red Wing, MN 55066-0301
http://www.ndrf.org External link
Tel: 651-327-0367
Fax: 651-267-0524
Dysautonomia Youth Network of America, Inc.
1301 Greengate Court
Waldorf, MD 20601
http://www.dynainc.org External link
Tel: 301-705-6995
Fax: 301-638-DYNA

Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last Modified December 2, 2015

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My thoughts of 2015

As this year comes to a close, I would like to reflect on this past years events, feelings and New Years resolutions.  To begin with the starting of the support group I hope has been such a gift to the members as much as to myself.  The support group some days larger some days smaller groups but it seems even if it’s just a few, it was meant to be just the few of us.  The biggest gift is the understanding that we all are experiencing different and some of the same symptoms, and we are all feeling alone in this disease.  I have also had the gift of getting to know the other side from the spouses on what they go through, which has helped me in my own life.  I have also learned the lack of communication between Doctors is our biggest hurdle and lack of public recognition of this disease with family, friends, co workers and the general public.  Example:  If I share I have a Vestibular dysfunction autoimmune disease, people will say “oh” and continue there own conversation, If I said I had a broken leg, MS or cancer, the response would be completely different.  Not because people are rude but because people don’t understand or have never heard of this disease.

This year has been has been extremely difficult for me, My symptoms worsened, I am disabled and yet I am so grateful that I am still mobile and have my family to help me when needed.  The biggest change in my health has been the visual changes on a regular basis and my drop attacks ( I fall with out any notification) There is no bracing yourself, or putting your arm up for protection, I just do it, end up where ever I fall, then instantly want to throw up.   Then I feel so tired, like I can’t get up, function, takes me a day or so to recover, forget the bruising, knots on the head or sore body, it’s the cognitive and fatigue that is the hardest to recover from, almost feels like getting run over by a truck.  But I feel I am still trying to learn my limits and if I push them I pay.  But for me, the support group has become my safe place, my place I can be my self, say how I really feel and cry if I need to with out any judgement.

This next year my goal is to increase the group size even just a little,  write letters to all the Doctors involved in our care explaining what patients with our illness go through and need from them.  I would like to establish a newsletter to send to them on a regular basis, I would like to raise awareness about Vestibular dysfunction as much as a I can.  I would also like to continue having some speakers for different aspects of our disease, we know there is no cure, but just to help us understand what’s happening to us.  To provide support and education for us. I also want so desperately to make Doctors to understand the depression aspect of our disease.

On a personal level, I have to still adjust to the new me and hope  I can accept this person and learn to love this person with out guilt of who I use to be, the guilt of not being able to participate in every function, or do more than I can or even contribute as much as I use to.  This is the hardest hurdle for me.  So I am looking forward to 2016.  I am hoping trying so hard to be happy with me.

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