POTS and benzos

I saw that a couple of other posts were written about POTS here.  I was at MAYO two years ago where they made a direct corrrelation between benzo use and POTS.  I was diagnosed with POTS there and for those who know anything about it, it is pretty debilitating, causing high heart rate, exhaustion, and many other symptoms. Does anyone here know anything more about this link and how benzo use can aggravate POTS symptoms?

Thanks for any feedback.

Lynnie

You can look on youtube for Brian Baxter. He explains what he went through but 5 years out I think the POTS is better. That is NOT to say it took him 5 years. Only saying 5 years for the POTS. I wish you well and can certainly relate to this.

I didn't know that a link had been identified. I had prolonged POTS following a CT wdwl & no doctor identified a connection & I was instead dxd with CFS. My POTs eventually resolved after about 18 months, (very thankful it did not take 5 years).

So BW can CAUSE POTS. I think I might have developed POTS as a result of my wd. Can anyone tell me more about the syndrome and it's link to BW.

 

 

Thank you.

I know Brian had a pre existing condition of high HR. so his was not induced by bw, but it was worsened.

Mine was absolutely withdrawal induced, have always been very fit with low BP & no cardiac issues.

I am the same way, ihope. I've always been very fit and healthy. Now my health is shot. I really don't know what to do.

I don't know of any research papers confirming the link between POTS and benzos, but the more I read about it the more convinced I am that my POTS symptoms are nothing other than one of the many perks of benzo w/d.

If you do a search on this forum you'll see POTS being mentioned in quite a few posts over time.

A proper diagnosis and proper medical treatment might help POTS patients recover and regain their quality of life. My dr thought I need to be on klonopin for my POTS as well, as benzos are commonly prescribed for POTS patients...and now I'm back to square 1 with more symptoms than ever.

waitingforrelief, and everyone else, a good place to get more info on POTS is www.dinet.org

Blessings,

Amy

What's POTS??

postural orthoststic tachycardia syndrome - a disfunction of one's autonomic nervous system - its main feature is an increase of one's heart rate by at least 30 beats per minute when going from lying down to standing, or a sustained heart rate of 120+ beats per minutes while standing, while one's blood pressure doesn't change significantly

I too was diagnosed with POTS. never had it before tapering! Seems like there are a lot of posts about it here. I did a quick search on this forum and got 6 pages of results! Seems like a common concern. The good news is that it goes away eventually and there is treatment for the symptoms. With me, treatment mafe me feel worse! Some days my POTS is non existant and others its terrible.  I blame it all on the benzos.

I have been struggling with this two at 18 months out.  I never had this before BW.  How long did it take to recover.

Well it hasn't gone away for me, but my cardiologist and neurologist both say it eventually clears up on its own after a couple years. Yippee.

Did they give any tips on how to deal with it until then? I've read that staying in a supine position for an extended period of time can cause POTS but if you have while tapering and can't stand for long then what are you supposed to do? That is one symptom that I can't stand. As I was getting closer to Relative withdrawal, my heart rate was going up. I was cutting Neurontin then though. It has calmed down some but when I did reach Relative withdrawal, my pulse would be 160 bpm when I got out of the shower...it could have been higher because I stopped checking I think. Or it could have been 160...Still yet, this is without cutting benzo??

Apart from saying there is medication for it, no. The meds made me feel worse. I have an appointment with another cardiologist in a couple days to see what he has to say.

the following info can be found on www.dinet.org

 

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 (Redman, 2000). 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 (Mathias, 2000). 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 (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, 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 (Grubb & Karas, 1999). Compression stockings should be fitted to achieve the greatest benefit. BrightLife Direct* carries affordable compression hosiery.

 

One POTS patient has found relief of symptoms by wearing a G-suit, and she has created a website that details her experience with this compression device. Her website begins "G-suits are pants that can save the life of a fighter pilot. G-suits are pants that have 'saved' my life too." Click here to visit this patient's informative website.

 

Correcting anemia has been shown to improve orthostatic tolerance (Low, 1994).

 

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 (Low, 2000).

 

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 (Grubb, Kanjwal & Kosinski, 2006).

 

Getting plenty of rest is very important for those with POTS. It has been reported that some POTS patients have significant sleep disturbances (Low, 2000). 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 (Shannon, Diedrich, Biaggioni, Tank, Robertson, Robertson & Jordan, 2002). Drinking large amounts of water helps to raise blood pressure (Jordan, Shannon, Grogan, Biaggioni & Robertson, 1999). 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 (Low, 2000). 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 (Vanderbilt University Autonomic Dysfunction Center, 1999). Impaired renal sodium conservation can contribute to hypovolemia (Streeten, 1999). One study found POTS patients to have inappropriately low levels of renin and aldosterone, two hormones that promote sodium retention and increase plasma volume (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). 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 (Low, 2000). Other physicians suggest between 3-5 grams of salt per day (Grubb et. al., 2006). 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. Read more

 

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 (Grubb, 2000). 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. 

 

Walking around right after getting out of bed is beneficial to some patients. The constricting leg muscles help to counteract pooling blood.

 

Wearing ankle weights compels the leg muscles to work harder, thereby forcing pooling blood back into the upper body. It is especially helpful to put the weights on before getting out of bed in the morning. Ankle weights should not be worn continuously, as the body will then adjust to the extra weight and they will no longer be effective. Ankle weights should be used with caution, as they can possibly interfere with one's normal gait which can cause injury.

 

It is important for one to consult a physician before trying any of the above treatments. Treatments that are beneficial to one patient may be detrimental to another.

 

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 (Shen, Low, Jahangir, Munger, Friedman, Osborn, Stanton, Packer, Rea & Hammill, 2001). 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" (Shen, 2002).

 

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 (Grubb & Karas, 1999).

 

Alcohol enhances peripheral venous pooling, which will exacerbate hypotension (Grubb & Karas, 1999). 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.

 

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 then 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 (Mathias, 2000). It is important to identify and avoid food triggers. Studies show that gluten sensitivity may play a role in neurological disorders (Hadjivassiliou, Gibson, Davies-Jones, Lobo, Stephenson & Milford-Ward, 1996).

 

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. Physicians who treat dysautonomia can be located on our Physician List.

 

Eating large meals can worsen hypotension in some individuals with dysautonomia (Mathias, 2000). 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 (Terlizzi, Rocchi, Serra, Solieri & Cortelli, 2008).

 

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 (Grubb & Karas, 1999). 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 (Grubb & Karas, 1999).

 

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 (Sandroni, 1998). 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 (Grubb & Karas, 1999)

Alpha Receptor Blockers (Grubb & Karas, 1999)

Calcium Channel Blockers (Grubb & Karas, 1999)

Beta Blockers (Grubb & Karas, 1999)

Phenothiazines (Grubb & Karas, 1999)

Tricyclic Antidepressants (Grubb & Karas, 1999)

Bromocriptine (Grubb & Karas, 1999)

Ethanol (Grubb & Karas, 1999)

Opiates (Grubb & Karas, 1999)

Diuretics (Grubb & Karas, 1999)

Hydralazine (Grubb & Karas, 1999)

Ganglionic Blocking Agents (Grubb & Karas, 1999)

Nitrates (Grubb & Karas, 1999)

Sildenafil Citrate (Grubb & Karas, 1999)

MAO Inhibitors (Grubb & Karas, 1999)

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 (Robertson, 2002).

 

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. 

 

Hope this helps

 

Amy

We have discussed this here before and I have mentioned it on my Dysautonomia boards.  I am starting to think these drugs are doing nothing more than crashing our nervous systems thus bringing all the symptoms of Dysautonomia and it's sub form of POTS. This is what I thought was going on until I started researching Benzo w/d.  My first clue was when my daughter tapered off of Effexor and had all the same sxs.  I was curious to know if Klonopin did the same thing and that's when I found this group.  Thank goodness I now know what has been wrong with me the last two years.  I am at 4 weeks and still having issues although I did have one window last week and felt human again.  I only hope recovery will be here soon.

 

Hang in there everyone!

I agree guntherp. They compromise the gut too, leading to candida and leaky gut syndrome. Sorry, an off-topic reply but it is kind of on-topic as benzos cause these things.

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 (Grubb & Karas, 1999)

Alpha Receptor Blockers (Grubb & Karas, 1999)

 

Alpha receptor blockers making POTS worse is consistent with my experience that clonidine as an alpha receptor enhancer, reduces the POTS.

 

It's interesting that beta & Ca channel blockers have been found to potentially exacerbate POTS as some here have found those meds helpful for bz withdrawal sx, (don't know about POTS though).

 

Ihope,

I've been put on beta blockers and felt worse as they further reduced my already low BP and made me dizzy and bedridden. Then my dr added florinef to 'boost' my fluid/salt retention, therefore my blood volume and my BP. That made my BP increase too much and on occasions I had BP levels that were almost twice as high as my baseline (not fun at all), so I discontinued taking it. Now i'm still taking propranolol - what my dr jokingly calls a homeopathic dose (7.5 mg a day) - but i'll be coming off all my meds and see if i can manage my symptoms otherwise.

Based on what I've been reading - mainly people's experiences - a lot of POTS patients have a hard time tolerating beta-blockers.

I believe most POTS specialists agree on the fact that finding the right med or the right med combo for their patients takes a lot of time and patience from both the dr and the patient.

Amy