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Autonomic Disorders: Syncope, Dysautonomia and POTs or Postural Tachycardia Syndrome (Dr. Jaeger 6/17/08)

Tuesday, June 17, 2008

Fredrick Jaeger, MD
Director of the Cardiac Arrhythmia Monitoring Lab Medical Director of the Syncope Center Cleveland Clinic Department of Cardiovascular Medicine

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Cleveland_Clinic_Host: Welcome everyone, and thank you Dr. Jaeger for being with us to discuss Syncope and POTS. We look forward to an interesting chat today. Let's begin with one of the questions!

Speaker_-_Dr__Jaeger: Thank you for having me.

Cleveland_Clinic_Host: We have received many questions before the chat and Dr. Jaeger is working to answer all of those, we will try to get to as many of your questions during our hour together.


Postural Orthostatic Tachycardia Syndrome (POTS)

TwoCents_2: I have POTS. One of my meds is disopyramide. I recently saw a cardiologist on an emergent basis that I had never seen before. He was unfamiliar with my case and stated he was "shocked" that I was taking this med. My arrhythmia is a tach, nothing emanating from the ventricles. I know that disopyramide is sometimes helpful for POTS, but I would like to know the how this med can help. I notice that the drug info sheets say it is used for "serious heart conditions" and that these conditions are ventricular in nature. Are there long term consequences to taking this med?

Speaker_-_Dr__Jaeger: Disopyramide was a drug that previously showed some promise for treatment of dysautonomias but is currently reserved only for more severe arrhythmias which could include atrial tachycardia. The fall from favor for this drug resulted from the CAST study which showed that antiarrhythmic medications can have potential severe side effects when used to treat relatively benign conditions.

Regarding Celexa, it is a drug that has been shown to be very helpful for dysautonomias. The risk of falls from this medication and others is certainly a problem - more so in the elderly or people with debilitating illnesses or difficulty walking. The drug can be used long-term with appropriate follow-up.

refuah: Could Dr. Jaeger please explain the difference between vasovagal syndrome and POTS? Are they related syndromes which are part of a larger spectrum, or are they entirely discrete diagnoses?

Speaker_-_Dr__Jaeger: You are correct that these are all part of a spectrum of what have been called dysautonomias. They can exist individually or be blended or mixed in an individual patient.

POTS - which is a tendency for the heart to race with trivial activity - can then trigger vasovagal syncope in occasional individuals.

However, vasovagal syncope or syndrome can exist alone without POTS.

refuah: My twenty year old daughter has recently been diagnosed with POTS, in addition to vasovagal. As part of her treatment the doctor suggested she begin strength training for her legs. She would like to resume her entire exercise routine, but is slightly hesitant to do so, since several times before her diagnosis she fainted in the middle of her workout. Is there a safe way for her to do both aerobic and strength training?

Speaker_-_Dr__Jaeger: Exercise training to strengthen leg muscles can help improve blood return to the heart and prevent venous pooling in which too much blood is trapped in the legs. We frequently enroll our patients initially in cardiac rehab programs to begin exercise under supervision.

Tammy: What causes the narrow pulse pressure in POTS... I seem to often have something such as 95/79 as my blood pressure reading when on my feet but when I lay back down it goes to 103/73 and I feel better ? Also besides salt and water, is there anything else that can prevent /help increase pulse pressure? Thank you.

Speaker_-_Dr__Jaeger: Probably it is narrow due to the low systolic pressure. It could be helped with support stockings (possibly) as well as some medications.

linda: What types of medical tests ex: cortisol, ANA, vit D, etc should I ask my primary care Dr. to check me for? I take 20mg cymbalta and still suffer low blood pressure, fatigue, pain (fibromyalgia), depression and bouts of fainting/shaking when very tired. I have passed all my cardiology workup tests except the tilt table where I passed out immediately after receiving nitroglycerine. Also, What types of licorice root, nutritional supplements are recommended to help POTS/NCS? Would you suggest adding a low dose of Wellbutrin to help increase energy with my symptoms?

Speaker_-_Dr__Jaeger: We frequently find vitamin D deficiency in patients who present with POTS type symptoms. Endocrinologists frequently will check the circulating adrenaline levels as well as cortisol that you mentioned in patients who present with POTS. I would also add that you should undergo specific autonomic testing to determine the underlying mechanism of your POTS symptoms. This would allow better specific targeting of the medications.

The tests that we do here include blood volume testing, hemodynamic tests to look at specific distribution, and cardiac function during postural changes.

As far as nutritional supplements, I am not aware that any nutritional supplement has any proven value in POTS or vasovagal, although patients frequently improved wellbeing with vitamins and certainly further studies need to be done.

blossom: I have had POTS for over 10 years and am 52 years old. I have remissions and relapses but no "full recovery". I am unable to sleep well due to unexplained micro bursts of arousals. Is there any studies being done on POTS and non-restorative sleep? I believe this is a major problem with my ability to work and function well.

Speaker_-_Dr__Jaeger: POTs patients frequently report sleep abnormalities and our colleagues in neurology and pulmonary medicine frequently do comprehensive sleep tests and polysonograms to help determine the mechanism of insomnia and have often been helpful in finding a pharmacologic treatment. The serotonin uptake inhibitors have also helped with sleep disorders. At the Cleveland Clinic, we often utilize multiple specialists to attack the problem of POTS.

Lenna: I recently heard that IVIG shows promise as a treatment for POTS? Do you know anything about this?

Speaker_-_Dr__Jaeger: There are studies being done but there is no conclusive data as yet. You can search on www.clinicaltrials.gov to see centers who are participating in studies.

TwoCents: In your experience would you say that there is a normally optimal mix of medications to help with POTS?

Speaker_-_Dr__Jaeger: The pharmacological approach to patients with POTS is but one aspect of their care which is individualized based upon the results of our comprehensive autonomic testing. There is no one specific set of medications that works for all patients. Generally however, the non-pharmacologic approaches to treatment are also very helpful including support stockings, physical therapy, social and behavioral counseling.

Generally, however the drugs usually do consist of various types of beta blockers, serotonin uptake inhibitors, proamatine, and a whole variety of other medications.

jenwyck: Hi Dr. Jaeger, I am a 22 yr. old female and was diagnosed with POTS in 1999. I have been told by many doctors that may dysautonomia is EXTREMELY severe. I have many symptoms, but those giving me the most problems are related to my heart. I did a holter and echo and they found that I have a sinoatrial block II degree type I, ventricular extrasystoles (31), and ischemia. My neurologist (I'm currently living in Rome) told me to wear a cardiac monitor (like those used for spinning) to control my heart rate. My resting heart rate is always between 110-115, if I stand up it goes to 120-130, if I walk for 30 secs it goes to the 130s, and if I walk for 5 min, slowly, it goes up past 170. When I take a shower, with water that is not too hot, it shoots up past the 170s-180s.

Speaker_-_Dr__Jaeger: It certainly sounds like you have extensive symptoms possibly caused by autonomic disorders such as POTS. I can't give you specific recommendations at this point. We would need to perform extensive comprehensive testing to determine the best pharmacologic and non-pharmacologic treatments.

jenwyck: 3/3: 2-Am i in danger for sudden cardiac death? A doctor said that I was because of my ventricular extrasystoles and the fact that my heart always beats so fast that it is tired. 3- Is there anything I can do or take to help myself? I have a lot of problems falling asleep because it is hard falling asleep with a heart rate of over 120. 4- If you agree, I would like to make an appointment with you for when I come home. It is hard to find doctors that really understand POTS, which is very frustrating for people like me. Any help you can give me would be really appreciated. I'll log on for the chat tomorrow. Thanks, Jen

Speaker_-_Dr__Jaeger: We would be happy to see you at the Syncope Center to evaluate you further.


POTS and Cognitive Changes

refuah: I read on one of the disautonomia sites that POTS can sometimes cause word retrieval issues in patients. Have you ever come across this correlation? My daughter had so many problems with word retrieval when she was in school that she was mistakenly diagnosed with a learning disability. We still do not know the cause of her problem.

Speaker_-_Dr__Jaeger: Frequently patients with POTS have reported cognitive impairments with word finding difficulty, insomnia, memory impairment and possibly learning disabilities. The cause of that is yet to be explained, but may involve chronic low blood flow to the brain.

bruenik: My daughter (16 yrs), recently diagnosed with POTS, also has cognitive problems intermittently as well as visual problems. Now that she knows what is causing it, she waits for it to pass. Usually it affects her on days when she's extremely fatigues. How common are cognitive and visual symptoms on POTS patients?

Speaker_-_Dr__Jaeger: We have already addressed cognitive impairments (above) in an earlier question. They are very common in POTS patients.

Lenna: You mentioned that social and behavioral counseling benefit POTS patients. Are you saying that there is a psychological correlation?

Speaker_-_Dr__Jaeger: Frequently POTS patients do develop secondary psychosocial abnormalities to their illness as you would expect in any patient with a chronic illness.


POTS Resources

Speaker_-_Dr__Jaeger: Some one also asked about resources for POTS and dysautonomias. Here is a list:


Dizziness

marybeth: A friend of mine had gastric bypass. She did well with the weight loss, but has started to have unexplained dizziness. I heard that this may be related to the fact that she had this surgery. Is there a link?

Speaker_-_Dr__Jaeger: There is definitely a link that has been reported in patients who have had dramatic weight loss either from surgery or from diet which can cause low blood pressure in some patients. We frequently study patients post bariatric surgery with tilt table testing.

lkay54: Can you speak in general about dizziness/lightheadedness in relation to autonomic disorders and heart problems? Is this a problem with routing through the carotid arteries? Any general information you can provide may be helpful. Thanks.

The syndrome of carotid sinus hypersensitivity can cause sudden drop in blood pressure and loss of consciousness in susceptible individuals usually the elderly. This is an example of an overactive reflex from the carotid artery that I think you are referring to. Otherwise, any cardiac disorder and arrhythmia can also trigger lightheadedness and dizziness through multiple mechanisms such as drop in blood pressure, etc.

Tilt table testing and carotid testing can frequently help determine the cause of dizziness.

martzj: Thank you for you time Dr. Jaeger. I am having constant problems with daily activities that are vertical, such as walking for more than 30 minutes without a sinking, sucking sensation in my chest and abdomen, then dizziness sets in and I feel compelled to lie down quickly with feet up. Nausea is constant and gets much worse when I need to walk, sit upright for hours. Acute MI at 41, slender, don't smoke, drink, eat very carefully. I am able to swim laps because it is horizontal work and I have the wonderful gravity assist of water, but the awful sinking, pulling, nausea returns as I leave the water. My heart drops a lot of beats, am on Coreg/Crestor. Any ideas? My cardio tells me my EF of 50% means I should be able to do ALL exercises. Thank you. Jaynie

Speaker_-_Dr__Jaeger: It sounds like you could be experiencing symptoms of dysautonomias which should be evaluated by a autonomic specialist or electrophysiologist.


Syncope and Fainting

linda: Is neurocardiogenic syncope a condition that may subside as one gets older?

Speaker_-_Dr__Jaeger: Excellent question. We frequently see the tendency for neurocardiogenic or vasovagal syncope to diminish with aging. Probably this is due to maturation of the autonomic nervous system as well as a biofeedback mechanism and avoiding potential triggers.

linda: Does a family history of cardiomyopathy predispose one to conditions like neurocardiogenic syncope?

Speaker_-_Dr__Jaeger: Cardiomyopathy can have potentially serious underlying causes of loss of consciousness and should be investigated thoroughly. Vasovagal syncope in as itself is not related to cardiomyopathy.

Tammy: Why does carrying on a long conversation or blowing up a balloon, etc. make my symptoms of lightheadness/dizzyness/facial pressure worse? Is it affecting my heart or is my nervous system them problem?

Speaker_-_Dr__Jaeger: If a person is dropping their CO2 from exaggerated breathing that can frequently result in sensation of lightheadedness. But there are many mechanisms as well that can account for the dizziness you described

Christine: I am a female 32 year old who has been fainting almost daily for 4 years. I get NO warning signs. I have been seeing an EP who diagnosed me with POTS. I am taking Midodrine and Mestinon and have a Biotronik Cylos. The settings right now are set to 60 BPM and the rate response is set to Medium High. On average my blood pressure is usually so low that I am always in a presyncope mode. Would increasing either of these be helpful? I was also wondering if you might be able to recommend a Dr. who specializes in POTS in Rhode Island or the New England area,. My local EP just signed off on my case and I am looking for a new Local Dr. Thank you for your help.

Speaker_-_Dr__Jaeger: Have your doctors utilized the CLS mode that is available on your cylos pacemaker? This can be helpful in patients with recurrent syncope but does require "fine-tuning" with frequent evaluations, tilt tests, stress tests, etc. to allow optimization of the parameters.

The electrophysiology program at Mass General and at the Brigham and Harvard have much experience with syncope and dysautonomias and could be a great resource for you locally. Other than that I don't know anyone in Rhode Island. We would also be happy to see you here.

mkoven: I have neurocardiogenic syncope and ehlers-danlos syndrome. I'm 41 years old and female. I've started having chest pain, shortness of breath, and lightheadedness with exertion. My understanding is that with ncs, those symptoms occur typically after, not during. I've had an event recorder, normal echo, ct for calcium, bloodwork. My doctors still aren't sure if there's a cardiac component to this. BTW, I'm allergic to iodine and gadolimium contrast agents. Have you heard of these symptoms with exertion? (My bp drops 40 points when I start working out-- 110/70-- 72/38). Any other tests you'd recommend to rule out cardiac. So far only clear abnormalities are my bp.

Speaker_-_Dr__Jaeger: Frequently ehlers danlos syndrome has been associated with dysautonomia. Including tendency for POTS type symptoms, such as racing heart and low blood pressure with exercise even very minimal exercise.

Testing would include comprehensive autonomic testing and tilt testing which does not use contrast agents. However, Ehlers Danlos patients can also have extensive abnormalities of their vasculature depending on the type of Ehlers Danlos including some very important abnormalities of their aorta and its branches.

A thorough evaluation of cardiovascular structures and the aorta should be performed in Ehlers Danlos patients, usually with CT or MRI. IN contrast allergic patients, these studies are usually important enough to justify pre-test administration of steroids to prevent allergic reactions.

Cleveland_Clinic_Host: We are getting ready to close for today. A large number of questions were received and we apologize if we did not get to your question. We will try to answer as many questions possible in these last few minutes.

Meiko: I am a 31 year old female. 3 months ago I was diagnosed with syncope due to complete heart block. I had a two lead pacemaker implanted. My brother at the age of 29 was diagnosed with Wolf Parkinson White syndrome. We have no family history of heart problems. Could these be related?

Speaker_-_Dr__Jaeger: Generally complete heart block is not related to WPW syndrome. WPW certainly can cause syncope but a different mechanism than complete heart block.

witchdoctor: Would either syringomyelia (not chiari) or mastoiditis cause syncope? A basilier skull fracture (1963) damaged 6-11 cranial nerves, would syncope be caused by this now?

Speaker_-_Dr__Jaeger: Any CNS abnormality or disruption of the cranial nerve distribution could certainly predispose someone to autonomic dysfunction and syncope. You could investigate this by comprehensive autonomic testing - for example as we offer in our Syncope Center.


Tilt Table Testing and Diagnostic Testing

marybeth: How old do you have to be before you can have a tilt table test? My daughter is 14.

Speaker_-_Dr__Jaeger: We frequently do tilt table testing on the pediatric population, as well as autonomic testing.

doremut: I recently wore a Holter Monitor for 24 hrs. It showed that my heart rate was erratic, ranging from 40 at rest to 180 at rest. I also have Orthostatic BP. I am 24 yrs. old. I don't have any energy, I have been diagnosed with 2nd degree heart block. Is there any medications/treatments presently or in the future that will help my quality of life?

Speaker_-_Dr__Jaeger: Your situation sounds like something that should be investigated by an autonomic or syncope center. There are many options available that are tailored to the individual patients.


Wolff Parkinson White Syndrome (WPW)

pankowcj: I have seen 2 different cardiologists for WPW and I am seeing a 3rd next week after wearing several different monitors. They differ in their opinion that my symptoms are caused by the WPW. It this common if a person has a non-life threatening condition?

Speaker_-_Dr__Jaeger: WPW frequently can give a variety of symptoms that can be difficult to capture with monitors. However, we frequently will do a baseline electrophysiologic testing (EP) to determine the severity of the WPW condition and potentially cure with ablation.

EP testing involves insertion of wires or catheters into the heart with mapping done to locate the extra connections. These procedures are relatively safe and routine. These connections can usually be found fairly easily and can be cured in 97 percent of cases.

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr.Jaeger is over. Thank you again Dr. Jaeger, for taking the time to answer our questions today.

Speaker_-_Dr__Jaeger: Good bye and thank you for having me.

Technology for webchats paid in part by an educational grant from AT&T Ohio and the AT&T Foundation (formerly SBC).

Reviewed: 07/08


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