POTS/Dysautonomia/Undiagnosed-Follow Me Over On Facebook…

I am getting involved in a lot over on Facebook and I just don’t have the time to connect everywhere. That being said I REALLY want to continue connecting and corresponding with those of you I have met on here and others I have not.

Please come find me on Facebook at https://www.facebook.com/itsapotslife

There’s a lot going on community-wise and things are beginning to take shape.

If you live in Tennessee or the Carolina’s be sure to message me! Community groups have begun to form and as we all know having a chronic illness makes us all feel “alone” but we’re NOT!

Please share with anyone you know struggling with Autonomic Dysfunction/POTS/NCS/EDS and so forth.

POTS/Dysautonomia Awareness

Dysautonomia/POTS merchandise available to help to spread awareness and fund research! 10% of all profit will be donated to Dysautonomia International. Please consider making a purchase today, and always remember that sharing is caring, so liking and sharing this post helps more than you know! ‪#‎dysautonomiaawareness‬ ‪#‎fightforacure

Find and share via the campaign page: www.booster.com/itsapotslife or via facebook: www.facebook.com/itsapotslife.

Currently there are three styles:

fall1.jpg
If you fall, I’ll be there.

https://www.booster.com/pots-if-you-fall-ill-be-there

2
I love someone who has Dysautonomia.

 

https://www.booster.com/someone-i-love-has-dysautonomia

warrior1
POTS Warrior

https://www.booster.com/pots-warrior-nevergiveup

Each style comes in different colors and has a hoodie option as well. Again, please consider donating and helping to support fellow POTSIES and raise awareness for Dysautonomia.

POTS- What helps. What to AVOID.

POTS What Helps? 
The contents of this Web page are provided for informational purposes only and should not be used as a substitute for professional medical advice, diagnosis or treatment. Please keep in mind that new treatments are continually emerging and some of the older treatments may rarely be used.

Your physician may prescribe medication to decrease the symptoms of POTS. Doctors admit that treatment can be a challenge and that no single therapy is uniformly successful. Medications that are useful in some patients may have no effect in others. Occasionally medications can worsen symptoms. Medications used to treat POTS include the following:
Anti-arrhythmic drugs, such as disopyramide (norpace), have been used to treat POTS patients. However, studies have shown that some anti-arrhythmic drugs may increase the risk of death, and they are usually used only to treat life-threatening arrhythmias.

Benzodiazepines, such as Clonazepam (klonopin) or alprazolam (xanax), are not used as a first-line of treatment and can worsen tachycardia and hypotension. However, they may be helpful in select patients. Klonapin has been shown to be effective in the treatment of some patients with neurally mediated syncope. These drugs are central nervous system depressants. They are thought to enhance the effect of gaba, an inhibitory neurotransmitter. Benzodiazepines should be used with caution, as they are highly addictive. Some physicians do not advocate their use.

Beta Blockers are especially useful in those with elevated norepinephrine levels, beta-receptor supersensitivity and a hyperadrenergic state. Beta blockers can exacerbate hypotension and are not well tolerated by some dysautonomics. Beta blockers need to be used with caution, as they are known to reduce plasma renin activity. Research shows that hypovolemic orthostatic intolerant patients commonly have inappropriately low levels of plasma renin activity. Reduced plasma renin activity may be an important pathophysiologic component of the syndrome of orthostatic intolerance. Hence, some POTS patients may have low plasma renin activity that is contributing to their disorder. Beta blockers may further lower plasma renin activity in these patients. Therefore, the use of beta blockers in some hypovolemic patients may be counterproductive.
Beta blockers should be used with caution, if at all, in those with mast-cell activation disorders. Beta blockers may trigger mast-cell activation.

Cerefolin is a vitamin supplement that may help patient’s combat fatigue and feel more alert.

Clonidine (Catepres) is a centrally acting alpha-agonist agent. Clonidine inhibits sympathetic outflow. It can stabilize heart rate and blood pressure in patients with post-ganglionic sympathetic involvement. Clonidine will actually display a vasoconstrictive effect in these patients.  Clonidine is started at 0.1 mg a day and titrated upward. It is available in a long-acting patch form.

DDAVP (Desmopressin) is used to help patients retain water. DDAVP can raise blood pressure and seems to be especially useful in lessening morning hypotension. It is a man made copy of the anti-diuretic hormone vassopressin. Vassopressin and DDAVP stimulate the kidneys to concentrate urine.

Erythropoietin raises blood pressure and red cell mass. Red blood cell volume has been found to be low in POTS patients. Erythropoietin is also a potent vasoconstrictor and is quite useful in the treatment of orthostatic disorders.  There may be an impairment in erythropoietin production and/or function in some individuals with POTS. Erythropoietin reportedly works in 80% of patients. One study showed that erythropoietin administration led to dramatic improvements in some patients with orthostatic hypotension. However, a later study of (only) 8 patients with orthostatic tachycardia reported that erythropoietin did not help the tachycardia. Erythropoietin is not commonly used because it has to be injected and is expensive. Procrit is a common medication that increases erythropoietin, which in turn increases red blood cell mass. Patients treated with erythropoietin may need iron supplementation as their hematocrit rises.
Prior to starting erythropoietin, a complete serum blood count (CBC) as well as a serum iron, total iron binding capacity, and ferritin level should be obtained by one’s physician. Erythropoietin can be employed as long as the hematocrit (HCT) is less than 50, and patients appear to achieve the best hemodynamic effect when the HCT is in the low to mid-40 range. The usual starting dose of erythropoietin is 10,000 units injected subcutaneously once weekly, and it usually takes 4-6 weeks to see the full effects of this medication. Patients should have their HCT checked monthly to make sure it is below 50.

Florinef (Fludrocortisone) increases plasma volume. It helps the body to retain salt and water. It also sensitizes blood vessels so that they can constrict more easily. Some doctors administer salt tablets with florinef. This is because the effectiveness of Florinef depends upon salt intake. Florinef can deplete potassium and magnesium and supplements may be required. Florinef increases intracranial pressure and should not be used in patients with hind brain compression. Numerous symptoms of sympathetic overactivity are enhanced by Florinef and some people develop severe headaches as a result of treatment. Florinef is a mineralocorticoid and, like beta blockers, can reduce levels of plasma renin activity. Reduced levels of plasma renin activity correlate with the hypovolemia observed in some POTS patients. Florinef may be a counterproductive treatment in these patients.
Usually, POTS patients are prescribed 0.1-0.2 mg of fludrocortisone daily. The dose should never exceed 0.4 mg orally each day as adrenal suppression may occur.

Ivabradine, a sinus node blocker, has reportedly helped some POTS patients experience less symptoms. Ivabradine is sometimes used as an alternative to beta-blockers because it results in heart rate reduction without vasodilation, sexual disturbances, ornegative inotropic effects.

Labetalol is sometimes used in POTS patients because it induces both alpha- and beta-blockade. Dosages of 100-400 mg orally twice a day may be employed. Carvedilol works in a similar fashion to labetalol and is also sometimes employed as a treatment for POTS.

Methyldopa is helpful in select POTS patients.

Mestinon (Pyridostigmine Bromide) has traditionally been used to treat myasthenia gravis, but is now sometimes being used to treat POTS patients. Mestinon works by inhibiting the breakdown of acetylcholine. Acetylcholine is the main chemical messenger of the parasympathetic nervous system. Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors. Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction. Mestinon is particulary useful in patients who have the postviral, paraneoplastic or autoimmune forms of POTS. Mestinon is usually started at 30 mg orally twice a day, titrating to 60 mg orally twice daily, if necessary.

Motrin (Ibuprofen) or Indocin (Indomethacin) might be beneficial treatments for patients with postprandial hypotension. Postprandial hypotension refers to low blood pressure occurring after meals. Motrin and indocin block the blood pressure lowering effects of prostaglandins. Studies have suggested that nonsteroidal anti-inflammatory drugs may also lower one’s risk of developing Alzheimer’s disease. However, long term use of nonsteroidal anti-inflammatory drugs can have serious side effects.

Phenobarbital is a central nervous system depressant. It can be useful in the hyperadrenergic form of dysautonomia. However, phenobarbital is a barbiturate and people can become addicted to this drug. Barbiturates can also cause fainting.
Prednisone, plasma exchange or intravenous gamma globulin may be used in patients who are in the acute post-viral phase of the illness. These treatments are most likely to be effective in patients displaying evidence of an acute autonomic neuropathy.

Saline has shown to be very beneficial in decreasing POTS symptoms. It is an inexpensive treatment with few side effects. However, saline must be given through an IV, which is time consuming and may require trips to the doctor’s office. Some of the most severely affected patients report having a peripherally inserted central catheter (PICC line) inserted so that IVs can be administered at home. However, some physicians do not believe the benefits outweigh the possible risks associated with a PICC line.

Selective Serotonin Reuptake Inhibitors (SSRI’s) are sometimes used to treat those with autonomic disorders. SSRI’s are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure. Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation. SSRI treatment can suppress the sympathetic nervous system. Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI’s may be effective in treating the chest pain that is associated with dysautonomia. However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.

Sleep medications are used by some POTS patients. A number of patients have significant sleep disturbances. Some patients report successfully using natural  alternatives to sleep medication. Herbal remedies should be used with caution and under a physician’s supervision, as there are known risks with some OTC sleep aids. For example, the FDA has issued warnings regarding Kava Kava and melatonin supplements have been shown to worsen orthostatic intolerance.
Stopping menstruation through the use of birth control pills has reportedly helped some patients feel better. Many women report a worsening of symptoms around menstruation. Stopping menstruation is somewhat controversial, and not all physicians advocate it.

Vasoconstrictors such as ergotamine, midodrine, octreotide, ephedrine, pseudoephedrine, yohimbine, theophylline and ritalin improve venous tone which decreases pooling blood.

Midodrine is particularly useful in patients with peripheral denervation. Midodrine is usually started at 5 mg orally three times a day and can be titrated up to 15-20 mg orally four times a day, if necessary. Midodrine can be used on an as needed basis. Theoretically, continuous use of midodrine could result in constriction of blood volume due to chronic sympathetic activation.

Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension. Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect.
Octreotide is administered by subcutaneous injection starting at 50 µg 2-3 times a day, and dosages may be titrated up to 100-200 µg three times a day. A long-acting injectable form has also been developed.

Ephedrine is not often used due to its short half-life and undesirable B-adrenergic actions. Ephedrine can cause tachycardia.
Theophyllineis primarily used in asthma patients. One of its effects is to increase vasoconstriction, therefore theophylline is sometimes used to treat dysautonomia.

Ritalin increases peripheral vascular resistance via alpha receptor stimulation.  Ritalin is prescribed by some physicians, but can be addictive.

Wellbutrin (Bupropion) is a central nervous system stimulant. It is a dopamine agonist and also a weak blocker of the neuronal uptake of serotonin and norepinephrine. Wellbutrin is not habit forming and works immediately. Wellbutrin can sometimes be used to combat the fatigue that plagues POTS patients.

There are also many non-pharmaceutical methods to decrease the symptoms of POTS. These include the following:
Butcher’s broom may lessen orthostatic hypotension in some patients. Studies show that butcher’s broom does not cause supine hypertension and that it can alleviate the worsening of symptoms in hot environments. Butcher’s broom is a vasoconstrictor that reduces capillary permeability. Butcher’s broom has been used as a diuretic, so patient’s need to be especially cautious about taking it. Butcher’s broom should only be taken under a doctor’s supervision.

Changing eating habits and diet can help relieve hypotension. Patients should eat frequent small meals instead of three large meals a day. This will help reduce the amount of blood needed for digestion. Hence, more blood will be available for the brain and heart. Refined carbohydrates, such as white flour and sugar, can exacerbate hypotension. There are patients that report a worsening of symptoms when eating certain foods, such as dairy products. It is important for each patient to identify and avoid their food triggers.

Cooling devices can help POTS patients. Cool Sport* sells personal body cooling vests that may help patients tolerate hot environments.

Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one’s legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity. Squatting can also be a useful counter-maneuver, although some patients report an increase in symptoms after squatting.

Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30-40 mm Hg and will work best if they are waist high. Compression stockings should be fitted to achieve the greatest benefit. BrightLife Direct* carries affordable compression hosiery.
Correcting anemia has been shown to improve orthostatic tolerance.

Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume.

Exercise can be helpful to those with dysautonomia. It is important that one does not let their body become deconditioned, as this will exacerbate symptoms. Tightening and building the leg muscles will help them to squeeze pooling blood back to the upper part of the body. Swimming in water has been reported to help many dysautonomics, however no one who faints should go into water alone. Yaz Exercises and recumbent stationary bikes may be beneficial to some patients with POTS. Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it.

Getting plenty of rest is very important for those with POTS. It has been reported that some POTS patients have significant sleep disturbances. These patients may require more sleep than the average person.

Heart rate watches can help patients identify situations that trigger heart rate increases. These watches are available at sports stores or can be purchased on the Internet.

Ice has reportedly helped some POTS patients. Rubbing ice on the body, especially on the bottom of the feet or neck, may help some POTS patients ward off an episode.

Increasing fluids helps many people with POTS to feel better. Many POTS patients report Gatorade or electrolyte solutions to be particularly helpful. Drinking water has been shown to moderately reduce orthostatic tachycardia in patients with idiopathic orthostatic intolerance. Drinking large amounts of water helps to raise blood pressure. Consuming large amounts of water increases blood volume, which is especially useful in the hypovolemic and those with pooling blood. Some patients report that drinking water before getting out of bed in the morning helps decrease symptoms. Physicians suggest patients drink eight eight-ounce glasses of water daily. Patients should not drink excessive amounts of water because doing so can cause essential electrolytes to become diluted in the bloodstream, which may affect heart rhythm.

Increasing salt is a treatment used for many people with POTS, however salt is not recommended for all patients.
While normal subjects reduce urinary sodium excretion on assumption of upright posture, patients with orthostatic intolerance do so ineffectively. Impaired renal sodium conservation can contribute to hypovolemia. One study found POTS patients to have inappropriately low levels of renin and aldosterone, two hormones that promote sodium retention and increase plasma volume. Renin and aldosterone are both regulated by the kidney.
Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension. Salt helps to expand blood volume. A number of patients find salt tablets and/or electrolyte solutions to be helpful. Some physicians suggest patients who benefit from salt take in 10-15 grams daily. Other physicians suggest between 3-5 grams of salt per day. Salt is 39% sodium, therefore 15 grams of salt equals 5,850 mg of sodium.

Licorice root has been used as a remedy for various disorders throughout history. It can sometimes be used as an alternative to Florinef. Licorice root does have some side effects, and patients should get a physician’s approval before taking it.

Magnesium may be helpful to a number of POTS patients. Magnesium is sometimes prescribed to POTS patients with Ehlers-Danlos syndrome. Some patients report a decrease in arrhythmias after taking this mineral daily for a few weeks. Magnesium deficiency can cause many of the symptoms associated with POTS. Excessive norepinephrine levels can deplete magnesium levels. Magnesium should be used cautiously as it can lower blood pressure.

Scheduling activities in the afternoon as opposed to the morning is a wise decision for those with POTS. Most patients report symptoms being greater in the morning hours.

Sitting down in the shower instead of standing is helpful to many patients. It is important to avoid hot water as this will dilate blood vessels and exacerbate symptoms. Rinsing the legs (or whole body) in cold water before exiting the shower will constrict the blood vessels and should help one to feel less faint.

A sock filled with warmed rice may provide some relief from the headaches that can accompany dysautonomia. Rice socks can be made by filling a tube sock with uncooked white rice, tying the sock closed at the end. Heat the rice filled sock in the microwave for a couple of minutes until warm. Be careful not to overheat, and be cautious of hot spots. The rice will hold heat and provide long-lasting relief of headaches.

Standing up slowly will give a patient’s body more time to adjust to upright posture. Patients getting up from a lying position may find it beneficial to sit up for a few minutes before standing.

Treating allergies might help one to feel better. It has been reported that people with POTS lose their ability to vasoconstrict. This means that many POTS patients have problems with their blood vessels being excessively dilated. Histamine is known to dilate blood vessels, which can further lower blood pressure in POTS patients.
Allergies may also stimulate the sympathetic nervous system. Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants.
 POTS What To Avoid 

Ablation of the sinus node may be detrimental to POTS patients. A Mayo Clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia and postural orthostatic tachycardia features.  However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms. A follow-up evaluation showed no vast improvement in symptoms, despite better heart rate control. A later publication states “in our laboratory, sinus node modification, total sinus node ablation, or atrioventricular nodal ablation is not recommended for patients with inappropriate sinus tachycardia who have autonomic evidence of postural orthostatic tachycardia”.
Ablations have reportedly been detrimental to some POTS patients who were misdiagnosed as having inappropriate sinus tachycardia. After the apparently successful elimination of their “sinus tachycardia”, they were left with profound orthostatic hypotension.

Alcohol enhances peripheral venous pooling, which will exacerbate hypotension. Alcohol can also lead to a dehydrated state.

Anesthesia can be especially challenging for patients with autonomic dysfunction. When anesthesia is absolutely necessary, an arterial line should be inserted to monitor beat to beat variations in blood pressure. Heart rate should also be constantly monitored, as anesthesia can disturb cardiovascular function. Extra IV fluids are also needed.
Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient: http://www.ncbi.nlm.nih.gov/pubmed/17179264?dopt=AbstractPlus Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16698864&query _hl=1&itool=pubmed_docsum Preoperative considerations in a patient with orthostatic intolerance syndrome: http://journals.lww.com/anesthesiology/pages/articleviewer.aspx?year=2000&issue=08000&article=00041&type=fullte xt Autonomic dysfunction – anaesthetic management http://www.anaesthetist.com/anaes/patient/ans.htm

Bending up and down, as done when picking items up off of the floor, may increase symptoms. It is best to bend at the knee and squat down rather than to bend over forward at the waist.
Blowing up balloons is similar to the valsalva maneuver and can exacerbate symptoms in some patients.
Certain Foods, such as dairy products, may increase symptoms in some patients. White sugar and other refined carbohydrates can exacerbate hypotension by causing increased dilation in the gut. It is important to identify and avoid food triggers. Studies show that gluten sensitivity may play a role in neurological disorders.
Climbing stairs will make some patients feel worse.
Dehydration is one of the worst states a POTS patient can be in. It is very important to always stay well hydrated.
Doctors who don’t know much about POTS will surely leave patients feeling frustrated. Patients of inexperienced doctors may not receive expert care and may not return to optimum health. Finding an experienced physician is not only desirable, it is a necessity.
Eating large meals can worsen hypotension in some individuals with dysautonomia. This is because large meals can cause blood to pool excessively in the abdomen.
Energy Drinks, such as Red Bull, should be avoided in those with POTS. Postural tachycardia syndrome associated with a vasovagal reaction was recorded in a young volleyball player after an excess intake of Red Bull as a refreshing energy drink.
Epinephrine is used by doctors and dentists for a variety of reasons. It is commonly used in numbing shots. It is wise to avoid epinephrine as it stimulates the heart.
Exercise will make many people with dysautonomia feel worse. Strenuous, exhausting exercise should be avoided. Some patients will experience an exacerbation of symptoms after exercise that may last for a day or more, especially if they suffer from mitochondrial disease. These patients should check with a physician before starting any exercise program.
Exercise may be helpful in abating blood from pooling in the limbs. Exercise to build and strengthen the leg muscles can be especially beneficial. Exercise can help POTS patients to avoid becoming deconditioned. A deconditioned state further exacerbates symptoms of orthostatic intolerance.
Fatigue enhances peripheral venous pooling. Those with POTS will do well to live life at their own pace. It is important that patients don’t overdo it, as this will make them feel even worse. POTS will require some lifestyle modification.
Giving blood can be harmful to people with POTS. Blood pooling in the legs already diminishes the amount of blood flowing to the heart and brain. Further, some patients are hypovolemic (have low blood volume) and need every drop of blood that they have. Blood should not be donated and should only be drawn when necessary for medical reasons.
Heat dilates blood vessels and will make POTS symptoms worse. Patients should avoid spending a lot of time outdoors on hot days. POTS patients should not take hot showers/baths or subject their bodies to saunas, hot tubs or greenhouses. Heat enhances peripheral venous pooling.
Holding the arms up in the air can cause problems for some individuals. Holding the arms up requires the heart to work harder to counteract the effects of gravity. This is especially difficult for the heart if there is already excessive venous pooling in the lower limbs. The heart may not be able to effectively pump blood up into raised arms and tachycardia will result from its effort.
Lifting objects can aggravate the symptoms of POTS. This may be due to the increased work load on the heart, especially if blood is pooling in the legs. Pooling blood in the lower body makes less blood available for the muscles in the upper body. Also, straining, bending over, coughing and sneezing all raise cerebral spinal fluid pressure. It has been theorized that some POTS patients may experience symptoms while lifting due to changes in cerebral spinal fluid pressure.

Many medications will affect autonomic testing results. Some medications that have been reported to significantly affect autonomic testing results include: chlorpromazine, thioridazine, tricyclic antidepressants, bupropion, mirtazepine, vanlafaxine, clonidine, alpha blockers, beta blockers, calcium channel blockers, opiates and topical capsaicin. Some physicians believe patients should discontinue measures at alleviating symptoms before autonomic testing. By doing so, symptoms are more likely to present during testing. This may help a physician to discern the true nature of a patient’s disorder.

Numerous over-the-counter products, such as melatonin, can negatively effect the POTS patient. Many products stimulate the heart or lower blood pressure or have diuretic effects, etc. Some products can help one person while hindering another. For example, caffeine can have the positive effect of raising blood pressure in some individuals. However, caffeine also increases the length of time that catecholamines remain active and this can be detrimental to those with a hyperadrenergic state. POTS patients should check with their doctor before taking over-the-counter products.
Over-stimulating environments can make POTS symptoms worse. A number of POTS patients report being overly sensitive to bright lights, loud noises and busy environments.
Singing has been reported to temporarily worsen symptoms in some individuals.
Some pharmacologic agents may cause or worsen orthostatic intolerance. Please check with your physician before taking prescription or over-the-counter medications.
Some of the medications that physicians have identified as causing or worsening orthostatic intolerance include:
Angiotensin Converting Enzyme Inhibitors
Alpha Receptor Blockers
Calcium Channel Blockers
Beta Blockers
Phenothiazines
Tricyclic Antidepressants
Bromocriptine
Ethanol
Opiates
Diuretics
Hydralazine
Ganglionic Blocking Agents
Nitrates
Sildenafil Citrate
MAO Inhibitors
Olanzapine
Stress will often aggravate the symptoms of POTS. The body is continuously adapting to stress, whether it is physical, mental or chemical. POTS patients sometimes lack the ability to correctly process stress due to malfunctioning or excessive functioning of the autonomic nervous system (ANS). Patients may also already have high levels of norepinephrine, which is a stress hormone. POTS patients need to avoid stress (when possible) and live life at their own pace.
Specific stresses such as surgery, childbirth and trauma (such as a car accident) have preceded or worsened the development of POTS in some individuals. This is thought to occur due to a number of factors. Surgery, childbirth and trauma can result in excessive blood loss in POTS patients who may already be hypovolemic. It is important for POTS patients to be given extra fluids during these times. Some people theorize that surgery may require a positioning of the neck that can aggravate hind brain compression. While the relationship between hind brain compression and POTS is controversial, it may be wise to avoid these positions (if possible) with POTS patients. Trauma to the neck may also aggravate hind brain compression. Trauma can result in damage to the ANS and also to areas that will secondarily effect the ANS. Likewise, some believe the straining of bearing down during childbirth can aggravate hind brain compression and effect the ANS. POTS occurring as a result of the nutcracker phenomenon is also more prevalent after childbirth. Hormonal shifts have been theorized to contribute to the development or worsening of POTS symptoms after childbirth as well.

Travel by airplane is challenging for dysautonomics and may increase symptoms. Airplane cabins are pressurized to about 6,500 feet, which is high enough to cause some dysautonomia patients to hyperventilate. Hyperventilating makes a patient more likely to get symptoms of sympathetic activation.
Those with POTS do need to know that the air in an airplane is some of the driest in the world. Flying can have dehydrating effects in normal individuals. How much more so flying might dehydrate someone with low blood volume. Everyone should be well hydrated before boarding a plane. Also, normal people sometimes have trouble with blood pooling in their legs during flights. Rarely, this can lead to the development of blood clots. Patients prone to pooling blood may want to wear compression stockings when flying. Patients may also want to request a bulkhead seat, as this will give them more room to elevate their legs.

Chronic Fatigue and Autonomic Dysfunction

Very interesting article on Chronic Fatigue Syndrome and Autonomic Dysfunction:

CFS and Autonomic Dysfunction

By Craig Maupin at http://www.cfidsreport.com
When you flip a light switch on in your house, you know what the end-result will be. The light switch connects a circuit that produces light when the electrons reach the filament. Your computer is similar. While you type a report or surf the Internet, the computer performs an abundance of unseen tasks in the background: checking for printer signals, moving data to the hard drive, and organizing its memory.   It is easy to take these tasks for granted, because they operate behind the scenes; they don’t seem relevant to the task at hand.
The human body functions much the same way. Every process in the body is controlled by signals sent from the brain, through the nerves, to each individual organ or muscle. Like the example of our computer, there is an abundance of tasks the body performs that can be easily taken for granted.    These background tasks are referred to as the “autonomic nervous system”.    Heart rate, sleep, digestion, and vascular pressure are all normal bodily functions that don’t receive a second thought.    But, what if the body didn’t perform these functions correctly?   What does autonomic nervous system dysfunction feel like?
There are a few illnesses that cause autonomic nervous system dysfunction.   As if by design, the areas of the brain controlling the autonomic nervous system were made the most secure. Even in degenerative neurological diseases such as Alzheimer’s or Parkinson’s, autonomic functions like heart rate and digestion remain untouched until the late stages of the illness.
However, there are examples of illnesses that do wreak havoc on the autonomic nervous system.   In the later stages of diabetes, the nervous system slowly deteriorates from the systemic, long-term damage caused by the illness.   Digestion, heart rate and syncope, pain response, and even sleep can be impaired.   In diabetes, the damage may present itself differently from person to person. This is also true of chronic fatigue syndrome (CFS). But with chronic fatigue syndrome (CFS), the severity of autonomic dysfunction puts the illness in a unique class.
Sleep dysfunction
Each of us has a circadian clock. Most of us take this clock for granted. We simply get sleepy at a certain time each day. We feel refreshed when we wake. With CFS, many lose the ability to
sleep regularly.   One person with CFS, Jodi Bassett, explains:  “You can lie awake with insomnia all night, completely exhausted but unable to sleep.”
Sleep deprivation is not the cause of the fatigue of chronic fatigue syndrome (CFS). When patients are able to sleep, often they find they are not refreshed.   They wake feeling just as tired as they did when they retired for the night.   Many theorize that the lack of restful sleep seen in CFS is caused by metabolic or circulatory dysfunction in the illness.   Gerry Campbell, who worked in biomedical research before being disabled by CFS, says sleep in CFS doesn’t mean a respite from the illness, “The fatigue is not relieved with either rest or sleep.”
Orthostatic Intolerance and Tachycardia
Orthostatic intolerance refers to the inability to sit or stand for prolonged periods. The orthostatic intolerance seen in chronic fatigue syndrome (CFS) may or may not be due to autonomic nervous system dysfunction that regulates heartrate. Studies have shown impairment in the circulatory system of CFS. There is a possibility that the makeup of blood in patients with CFS is different.   Many researchers have pointed to a hematological or cardiocirculatory rationale as a possible explanation.
Peter Rowe, a researcher from Johns Hopkins, was one of the first researchers to elucidate the strong link between chronic fatigue syndrome (CFS) and orthostatic intolerance. According to Rowe, the problem is widespread in the illness, but poorly understood, “We have no good data on the true prevalence of the problem.   I follow over 400 adolescents with orthostatic intolerance in association with chronic fatigue syndrome.”
Many patients suffer from postural tachycardia, a faster than normal heartbeat upon standing or remaining upright for a short time.   Donna, who is from Arizona, experiences faintness and an increased heart rate after standing or being upright for a short time.    She says CFS “makes it very hard to stand up without feeling terribly weak, faint, and very ill. My pulse races to 140.”    Like many people who suffer from CFS, Donna often must remain supine to remain comfortable.    She finds that this makes it difficult for her to leave her house or a couch.
Nausea, pain response, balance, vertigo
Balance and vertigo are also common. Laura Hillenbrand, the author of Seabiscuit, has vividly described what it is like to suffer from this symptom. While writing her bestselling book, she found the text on a page was hard to focus, the room was spinning, and her balance and surroundings were in a constant state of flux. “In the early 1990s, I could not read or write
(because of vertigo). There were months when I couldn’t get down the stairs. I simply lay in bed and hung a watch on the windowsill and watched the time go by.”
Another patient says, “The room can spin with constant vertigo. It can leave you unable to read even a few lines of text, write, watch TV, or have the radio on. ”
Mental Exhaustion
Many people with chronic fatigue syndrome (CFS) find that their memory and cognitive abilities relapse along with their energy levels.   Mental work produces extreme exhaustion.   After using their energy resources on an activity, reading or comprehending written material can be more difficult. Bev, from Alberta, Canada, describes it this way, “…on a really tired day I can read the same thing three times and not know what I read.”
Teresa was on her way to a doctorate fellowship before being felled by CFS.    She describes what it is like to lose her ability to process information quickly.   “I cannot balance my checkbook.   I used to balance it every month.    Heavy traffic is scary, it is overwhelming.”
Johnny Bohn, who has struggled with chronic fatigue syndrome (CFS) while completing his doctorate for close to 20 years, has found that working with the neurological dysfunction of CFS exacts a toll on his ability to remember details. “Long term [memory] is unaffected, but my short term is almost completely gone. I can’t remember things from one minute to the next.    Reading comprehension is terrible.   I have to read things many times before I start to remember, and then read them again later to be somewhat reminded.”
The most striking thing about chronic fatigue syndrome (CFS) is that some activities that are taken for granted can become difficult under CFS.    Carole Anne Dumas, who was a graphic artist before becoming disabled 3 years ago, describes losing one of her most pleasurable activities, reading: “I have been unable to read a book for the past 8 years, truly a heartbreaking and unexpected loss. Reading is always a sickening and painful effort; this lifelong pleasure, once taken for granted, is now an elusive luxury.”
This experience is common. Jerry Campbell says the mental clarity is most severe after exercise:   “I also have a next-day energy crash, with very deep fatigue and energy so low that it affects my thinking and memory.   All symptoms get worse after exercise. An hour or less of heavy exertion, or a few hours of moderate exertion, cause all symptoms to become severe, including memory, mental ability, listening, word-finding, balance and body temp, in addition to the pain and fatigue.”    Because of these problems, many people with CFS feel neuro-processing problems in CFS are not neurological at all, but may have metabolic roots.   Recent and powerful
Rna profiling studies done by the CDC have had more metabolic and immunological hits than neuroendocrine dysfunction.
A Common Factor
In coming years, there may be considerable debate over the source of the neurological dysfunction of chronic fatigue syndrome (CFS).   Neurology, more than other medical disciplines, often walks a fine line between theory and concrete knowledge. Some believe that each neurological symptom could be explained by the cardiologic and hypovolemic research. However, the question yet to be answered is whether the cardiological implications in CFS are due to autonomic dysfunction, or vice versa.    Others believe tissue inflammation or metabolic dysfunction is a likely culprit.
Either way, living with chronic fatigue syndrome (CFS) is like living with a body that cannot perform the tasks needed to keep its house in order.  Cognitive exhaustion, vertigo, balance problems, and memory may all be affected by CFS. Autonomic dysfunction, whatever the cause, can be a disabling and life-altering symptom of CFS.

The BIG POTS Survey

If you have POTS and you haven’t participated yet, do so! every entry they can get is so vitally important.


Studies- dinet.org

The BIG POTS Survey

Vanderbilt University and Dysautonomia International have partnered to launch the largest international study on Postural Tachycardia Syndrome (POTS).  POTS impacts millions around the world, yet no large studies have ever been conducted, until now.

This study enables patients to share their experiences directly with researchers, an important and innovative way to study this illness.   Nicknamed “The Big POTS survey”, by the patients who helped design the survey, its official name is “The diagnosis and impact of Postural Tachycardia Syndrome (POTS) – an international study.”

The study’s lead investigator is Satish R. Raj, MD MSCI, Adjunct Associate Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center.  Dr. Raj says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families”.  Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International.

The Big POTS survey is open to all patients diagnosed with POTS by a physician.  To learn more about the survey or to participate, visit:

https://redcap.vanderbilt.edu/surveys/?s=9rB9NkqMrC%20%20

Awesome Quotes/Sayings That Are True And Uplifting

Some days it is really hard to focus on what’s good about life especially for those of us with chronic illness. The following quotes have been uplifting to me for many reasons. Each one is different and each one is uplifting for  different reason.

Throughout my struggle I have found that staying grounded, positive and optimistic despite what others say or do that’s hurtful or extremely pessimistic is the only way to keep going and push forward even when the road seems impassable.

Never give up. Life is life and we are all lucky to be living it. Give thanks for the small things and find happiness even when all light seems to be gone.

can tell a lot about a person by what they choose to see in me ___


FB_20150330_10_49_00_Saved_Picture FB_20150401_22_48_10_Saved_Picture FB_20150506_01_37_03_Saved_Picture FB_20150526_20_07_48_Saved_Picture FB_20150602_12_35_50_Saved_Picture FB_20150624_11_39_57_Saved_Picture FB_20150628_06_24_10_Saved_Picture FB_20150716_08_30_29_Saved_Picture FB_20150717_17_28_52_Saved_Picture FB_20150718_13_11_56_Saved_Picture original You can't live a positive life with a negative mind_

Update on My Life with P.O.T.S.

The month of June was shrouded in bouts of vomiting and being unable to eat. I had an upper GI (Endoscopy) done on the 11th that showed Gastritis and lesions both caused by the Gastroparesis. No current bleeding which is always a positive.

By June 23rd I had been having both rectal bleeding and blood in my vomit my GI decided to do another Endoscopy to make sure noting was nicked during the last Endoscopy.


June 23, 2015- 8:00am. Had my Endoscopy done. It showed worsening Gastritis and erosion. No current bleeding but the doctor wants to do a Colonoscopy just to be sure.

I had been having trouble eating and keeping fluids down. By Saturday I had landed myself in the ER.

June 27, 2015- 9:00pm. ER. Dehydration, Urinary Tract Infection, Nausea/Vomiting.
-10:15pm. First bag of IV fluids

June 28, 2015- 1:30am. Admitted to the Hospital
-3:30am. Second bag of IV fluids.
-12:00pm. Third bag of IV fluids
-4:00pm. Fourth bag of IV fluids
-6:30pm. Fifth bag of IV fluids
-9:00pm. Sixth bag of IV fluids
-9:30pm. Finally able to eat something. No urine output.

June 29, 2015– 3:00am. Seventh bag of IV fluids- Has Dexterose and Potassium
-11:00am. Eighth bag of IV fluids- Has Potassium
-5:45pm. Ninth bag of IV fluids- Has Potassium

June 30, 2015-12:15am. Small urine output.
-9:00a. Discharged.

All in all. 9 bags of IV fluids and only an output of 250ml. Just goes to show how some people with POTS do not retain fluids. Fluid is vital to human life and without it our systems begin to shut down and we feel horrible. I was discharged from the hospital on Tuesday (6/30) and by Thursday (7/2) the vomiting, lethargy, and diarrhea was back with a vengeance.

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July 7, 2015- I had a colonoscopy scheduled for 12pm today. But the prep made me so dehydrated that I passed out and hit my head.

I ended up going to the ER (dehydration, nose bleed, hit head) instead of having the colonoscopy.

The colonoscopy has been rescheduled.

I admit that I am feeling defeated having to go through the entire prep just to have it postponed.


July 14, 2015-
Colonoscopy prep this time was different. I had diarrhea for 3 days but when I got to the office they said that they could not do the Colonoscopy because I was impacted. I have NO idea how this is even possible. Feeling a sense of dread. I’ve gone through 2 colonoscopy preps in one week. They want to reschedule in a week.

July 21, 2015- Called Home Health for them to come out and access my port. They were supposed to be at my house between 8 and 10 am. 10 am came round and no one had shown up so I called. The nurse informed me that they had been trying to get a hold of my PCP since Friday with no luck so they could not get the okay to come out. Wish they would have called to tell me that.

July 24, 2015- Got a call from IV Solutions where I get my IV supplies and was informed that since my PCP had not been in contact they had to drop me as a client. Home Health had to do the same. I admit I was both devastated and irate. Thankfully I had begun the search for a new PCP already a week prior when my old PCP seemed to never been in the office.

July 28, 2015- I canceled my Colonoscopy. Without Home Health and no IV fluids I just do not think that I can handle the prep again so soon. Will reschedule after I see my new PCP.

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July 29, 2015- My port site began to bleed. I am feeling an ache around my site and my right shoulder. I saw my PCP (by chance he happened to be in the office) He said not to mess with it that it looked okay. However, I felt the need to call the surgeon that implanted it and get an appointment with him just in case.

July 30, 2015– Uncomfortable. Made an appointment with the surgeon for 8/3.

August 2, 2015- Feeling very icky. Temperature is 101.9 and the aching and burning sensation has increased.

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August 3, 2015- Saw the surgeon. He de-accessed my port and said that it appears to be a bit swollen and red. Looks as if there may be some infection going on. Drew labs directly from the port and then from my arm to be analyzed. Should hear something by Friday.

Praying for no infection. Temp is staying around 100.0

Got put on antibiotics in the mean time. Now just to wait, watch and see what is next.

I admit though that it feels better now that the needle is no longer in place.

IV Saline Really Does Make A Difference

IV fluids are essential for many POTS/Autonomic Dysfunction patients including myself. This is a really great and informative article. Below is the link and some snippits from the article.


http://standinguptopots.org/treatment/iv

IV Saline and POTS

There is currently no consensus in the medical community on the utility of IV saline in people with POTS. Some physicians will prescribe it for acute hypovolemic shock (discussed below), but not for regular long term care, for a variety of reasons. Other physicians will prescribe daily or weekly use of IV saline in treatment of POTS in some patients. I have a friend who uses IV saline 24/7 and carries a battery operated pump in a backpack. Many people with POTS will use a PICC line or port a couple of times a week for a liter or two of saline.

Intravenous saline is used to treat significantly low blood volume, which can be a problem for some people with POTS. This can be difficult for doctors to test because it is a ratio of red blood cells to plasma volume. In POTS, both the number of red blood cells and the plasma volume can be low (and thus the ratio appears normal on the CBC). For some with POTS, their blood levels can drop low enough to result in hypovolemic shock.  The best way to get a measure of your blood volume is to do specific blood volume testing which uses a radioactive tracer called iodinated-RISA.  The tracer is injected using an IV and then blood samples are taken over time to measure the tracer levels in your blood and determine your blood volume.


Why might IV saline be better than oral fluids? In some cases, nausea and vomiting when drinking liquids defeats the purpose and can severely limit fluid intake. In others with rapid gut motility, less water is absorbed into the body than normal as it is rushed through the intestines. In addition, if your blood volume is low, but the ratio between red blood cells and plasma is normal, you may not be able to absorb the fluids even if you are drinking several liters per day.

Why use IV fluids? Intravenous fluids bypass the digestive tract to eliminate issues with nausea/vomiting and gut motility. The saline goes directly into your bloodstream to increase the plasma volume. In fact, a liter of normal saline can reduce both heart rate and other symptoms like brain fog in a person with POTS if her blood volume is low.

New Studies Out There– Vanderbilt

According to dinet.org there are two new studies currently going on at the Autonomic Dysfunction Center at Vanderbilt.
They are recruiting people with POTS for:

Modafinil & Cognitive Study (Amy Arnold, PhD)
http://www.dinet.org/images/STAMPED-AD_101414.pdf
Vagal Nerve Study (Andre Diedrich, MD, PhD)
http://www.dinet.org/images/ResearchMatchAd_approved_110614.pdf

If you’re interested you can contact Bonnie Black, RN through email at bonnie.black@vanderbilt.edu

The Autonomic Dysfunction Center
is part of the
Vanderbilt University Medical Center,
3228 Medical Center North,
Nashville, TN 37232.

Information found via www.dinet.org