Tag Archives: dizzy

Do you have PPPD?

I am interested in connected with someone who has gotten better or has less
>> symptoms for PPPD (Persistent Postural Perceptual Dizziness). Specifically
>> someone who experienced motion when they walked (sway and rock). It has also
>> been explained as feeling like you are standing on the deck of ship, BUT you
>> haven’t been on ship, or plane or anything. The cause for this varies
>> wildly. In my case I had head and neck surgery for cancer this past January.
>>
>> It is very confusing that in the diagnosis (PPPD) the D stands for the word
>> dizzy. When reaching out to anyone for me you need to make it clear that I
>> do not feel dizzy, get migraines, or nausea. I feel motion when I walk. For
>> the most part I am okay when I sit, stand, or lay down. It isn’t anything
>> you see it is a perception of motion or sway and rock. that I feel or people
>> like me feel. What actually is going on? Somehow a neurotransmitter signal
>> is sending an error message from my head to my body to feel motion when I
>> walk and that signal continues to be sending this mixed up message for the
>> past six month.  Anti-depression medication are used to dislodge it like
>> Effexor but there are others. These drugs work in the central nervous
>> system. The brain is malleable and can be re-wired with the help of these
>> drugs. I am trying this now with Effexor and am in Vestibular PT and
>> cognitive therapy.
>>
>> If anyone experienced motion when walking or sway and rock or any feeling
>> like being on the deck of a ship AND got better or symptoms did improve over
>> time, please share your contact information.
>>
>>

If anyone has PPPD please let me know so I can connect you with This Patient

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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

Organizations
Column1 Column2
National Dysautonomia Research Foundation
P.O. Box 301
Red Wing, MN 55066-0301
ndrf@ndrf.org
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
info@dynainc.org
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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Just a update!

My symptoms are becoming worse and more often, Although my hearing seems to be stabilizing, sounds the same, but I do have a new symptoms, I have the sensation of my Brain actually moving, it’s kind of scary when it happens because it happens with out warning, its almost like my brain is rotating and I have to sit and automatically have to throw up. I know my brain is not moving so it’s just a sensation but it feels like it. I know if I went to the Dr, they would say let’s do another MRI. I just can’t do any more MRI’s Ct scans, EEG’s, The drop attacks are becoming more frequent, but our weather here has been extremely hot and humid which we normally don’t have so I have to believe this some how can be related. I am looking forward to the weather cooling off, so maybe I can get some relief. Going to the Dr is not a option for me, I am so tired of tests. I can only try as hard as I can to keep my limits, eat every so many hours with protein, drink a lot of water, take my vitamins, meditate and of course medication and let go of the guilt that comes with this disease. Keep journaling, reading when I can. Try to limit stress, keeping toxic people out of my life. I try to swim as much as I can. Its not easy but I don’t want my muscles to weaken, so I push. Eating clean!. doing the best I can and be greatful every day I wake up and have a good day and can help someone else.

Have a great day!!!!
Kelly

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