Re: Dizziness and EDS.

[Guest guest]

Hi Tori,

> I was just wondering if anyone else suffers from dizziness and losing

> balance when standing up (like orthostatic hypotension?). >

Yes. I have orthostatic intolerance. I treat it with caffeine. See below

http://www.ndrf.org/orthostat.htm

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http://www.ndrf.org/answers.htm#My%20doctor%20has%20advised%20me%20to%20eat%

20a%20lot%20of%20salt,%20and%20to%20drink%20caffeine,%20why

My doctor has advised me to eat a lot of salt, and to drink caffeine, why?

One of the most important mechanisms preventing a reduction in blood

pressure when you stand up is an adequate blood volume. The most important

factors of maintaining a normal blood volume that you can control are an

adequate intake of salt and fluids. Patients with orthostatic intolerance

are extremely sensitive to a reduced blood volume. When you eat a lot of

salt, the sodium ions (from salt) are retained in your blood (plasma) and

ensures a normal blood volume. The extra salt is passed in your urine.

Caffeine is a drug that will raise blood pressure. Two cups of strong coffee

contains about 250 mg of caffeine, a dose that is adequate to raise blood

pressure in someone who has orthostatic hypotension (a fall in blood

pressure on standing up). Some physicians recommend that patients with

orthostatic hypotension who enjoy coffee drink two cups of coffee (not

decaffeinated) before they get out of bed. It should be pointed out that

some patients with POTS do not tolerate coffee. Their sympathetic nervous

system can be already in overdrive and coffee can aggravate their

tachycardia.

Dr A. Low , M.D.

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In fact, orthostatic intolerance, EDS, and Chronic Fatigue Syndrome were

linked in a recent study.

http://www.edstoday.org/newsletter/FW2000.htm#Lead

1: J Pediatr 1999 Oct;135(4):494-9

Orthostatic intolerance and chronic fatigue syndrome associated with

Ehlers-Danlos syndrome.

Rowe PC, Barron DF, Calkins H, Maumenee IH, Tong PY, Geraghty MT.

Department of Pediatrics, Center for Hereditary Eye Diseases, Wilmer Eye

Institute, s Hopkins University School of Medicine, Baltimore, land,

USA.

OBJECTIVE: To report chronic fatigue syndrome (CFS) associated with both

Ehlers-Danlos syndrome (EDS) and orthostatic intolerance. STUDY DESIGN: Case

series of adolescents referred to a tertiary clinic for the evaluation of

CFS. All subjects had 2-dimensional echocardiography, tests of orthostatic

tolerance, and examinations by both a geneticist and an ophthalmologist.

RESULTS: Twelve patients (11 female), median age 15.5 years, met diagnostic

criteria for CFS and EDS, and all had either postural tachycardia or

neurally mediated hypotension in response to orthostatic stress. Six had

classical-type EDS and 6 had hypermobile-type EDS. CONCLUSIONS: Among

patients with CFS and orthostatic intolerance, a subset also has EDS. We

propose that the occurrence of these syndromes together can be attributed to

the abnormal connective tissue in dependent blood vessels of those with EDS,

which permits veins to distend excessively in response to ordinary

hydrostatic pressures. This in turn leads to increased venous pooling and

its hemodynamic and symptomatic consequences. These observations suggest

that a careful search for hypermobility and connective tissue abnormalities

should be part of the evaluation of patients with CFS and orthostatic

intolerance syndromes.

PMID: 10518084 [PubMed - indexed for MEDLINE]