Vasovagal (Neurocardiogenic) Syncope

[Bill H.]

I'm a 43 year old male in good health except for Vasovagal Syncope confirmed by a tilt-table test. I have daily expisodes of low blood pressure (e.g., 65/35; pulse 90+) when showering, walking on a warm day, or exerting myself.  When seated or lying down, my BP is high (135/75 - 190/115; pulse 60-70).  I have only fainted once, but I feel very fatigued after an episode. I'm currenly unable to do much in the way of physical activity (e.g., mowing the lawn). I understand that this condition is difficult to treat, but after 7 months with no progress I'm getting discouraged. Are there other conditions I should be tested for?

Symptoms:

* Aching in upper back and shoulders
* Mild shortness of breath
* Mild sweating
* Darkening / dimming / washed out vision
* Near syncope, forcing me to sit or lie down
* Extreme fatigue

Medication History:

10/31/02: 25mg Toprol XL once per day
01/31/03: Increased Toprol to 25mg twice per day
03/26/03: Added 25mg Zoloft twice per day
05/07/03: Stopped taking Toprol
05/29/03: Added 0.1mg Florinef once per day

Medical Tests:

* Ultrasound of kidneys and adrenal glands

[AMYCHRIS28]

A related discussion, NEUROCARDIOGENIC SNYCOPE was started.

[Cloia]

I see that a lot of people in the section are using drugs to battle the symptoms of their Syncope.  I've been suffering of this condition for quite some time, but only recently got daignosed.  I'm trying to battle the symptoms through diet (higher salt, protein & fluid intake).  It seems to be working; however, I'm currently puffy from retaining this water.  I'm wondering if this retention is temporary or if I should be worried about it?  I really don't want to go on meds since I hope to try to get pregnant next year and will have to go off the meds at that point.

[ksmsmom]

HI TO ALL,
    I Just was diagnosed today with neurocardiogenic syncope. I am sure I have hed it quite a long time because there have been many episodes when my heart would begin to race and the only relief would be to lie down flat. Three weeks ago however I was at my daughters football game (she is a cheerleader) and I got up to get something to eat and after walking about 100 feet I passed out. Medics there checked my blood pressure and it was normal but at my doctor's the next day it was 80/56 which is very low for me. Tilt-Table Test (very scary) taken just today came back positive. I have not begun any medications so far but have to call my cardiologist tomorrow. My main question right now to anyone who can help is What are the chances that my driving privledges will be suspended? Has this been the case for any of you? The nurse at the hospital today said that this is a possibility. Please help me if you can?

Kathy

[ksmsmom]

HI TO ALL,
    I Just was diagnosed today with neurocardiogenic syncope. I am sure I have hed it quite a long time because there have been many episodes when my heart would begin to race and the only relief would be to lie down flat. Three weeks ago however I was at my daughters football game (she is a cheerleader) and I got up to get something to eat and after walking about 100 feet I passed out. Medics there checked my blood pressure and it was normal but at my doctor's the next day it was 80/56 which is very low for me. Tilt-Table Test (very scary) taken just today came back positive. I have not begun any medications so far but have to call my cardiologist tomorrow. My main question right now to anyone who can help is What are the chances that my driving privledges will be suspended? Has this been the case for any of you? The nurse at the hospital today said that this is a possibility. Please help me if you can?

Kathy

[ksmsmom]

HI TO ALL,
    I Just was diagnosed today with neurocardiogenic syncope. I am sure I have hed it quite a long time because there have been many episodes when my heart would begin to race and the only relief would be to lie down flat. Three weeks ago however I was at my daughters football game (she is a cheerleader) and I got up to get something to eat and after walking about 100 feet I passed out. Medics there checked my blood pressure and it was normal but at my doctor's the next day it was 80/56 which is very low for me. Tilt-Table Test (very scary) taken just today came back positive. I have not begun any medications so far but have to call my cardiologist tomorrow. My main question right now to anyone who can help is What are the chances that my driving privledges will be suspended? Has this been the case for any of you? The nurse at the hospital today said that this is a possibility. Please help me if you can?

Kathy

[charchar]

Hi I am the mother of a 18 yr old daughter and since she was 4 she would episodes of near passing out spells that made her very sick , she would lye down and about 30 min. later she would be ok. I took her to Doctors afer Doctors and they would take blood test for diabetes or low blood sugar,  But they were all normal  so they would just let it go.It was like they didn't believe us. She continued this for years and we thought this was just something that she would have to deal with , she was very active in school , cheerleader , basketball, softball. And when she felt a spell coming on she would have to lye down and then she would go back to playing. Then when she graduated she went to work and passed out at work and she went to the dr. and he sent her to a cardiologist and she done a tilt table test  and passed out on it .They tried meds. but the spells were getting worse .She got to where she was having spells almost everyday. And they did another tilt table test and she passed out again.They said that her heart rate would slow down and her blood pressure would drop way to low. The dr. recomended she get a pacemaker and we did and she has had it for 4mos. now and she feels better than she has ever felt in the last 14 yrs. The change was like day and night! I can never thank the dr. enough for what he has done ...He gave her life back to her. So all you that have problems with neurocardiosyncope ,just hang in there and you will finally find a dr. that will believe you. THANK YOU DR. WRIGHT!!!!!!!

[AB1]

Lisa/Bill  - Ive had this condition for about 6 months and the following helps me, but check all this with your doctor because I get the impression its not a simple problem and many people get it for different reasons.
I take Fludrocortisone and have found it makes a big improvement. I also take extra salt and drink plenty of fluid all day. Dont go crazy...I usually have a big glass of water with a half teaspoon of salt in the morning, I drink a sports drink mid morning and i put enough salt to taste on my lunch and dinner. I probably drink about 3 litres of fluid every day.
Anything that puits pressure on the blood system to share the blood around your body can bring on the symptoms. (Eating alot diverts blood to the digestive system, heat diverts it to the skin, standing up quickly can leave it all in your feet !) try to avoid doing two many of these together ( my nightmare is goping to a buffet lunch where the air con isnt working !)
If you are like me you may well have got very anxious about all this. Thats a seperate issue and comes with lots of ather problems. Try not to think about whats going on inside you all the time. Relax. Ive read that 70% of folks get over this after a period of time.

[AB1]

Lisa/Bill  - Ive had this condition for about 6 months and the following helps me, but check all this with your doctor because I get the impression its not a simple problem and many people get it for different reasons.
I take Fludrocortisone and have found it makes a big improvement. I also take extra salt and drink plenty of fluid all day. Dont go crazy...I usually have a big glass of water with a half teaspoon of salt in the morning, I drink a sports drink mid morning and i put enough salt to taste on my lunch and dinner. I probably drink about 3 litres of fluid every day.
Anything that puits pressure on the blood system to share the blood around your body can bring on the symptoms. (Eating alot diverts blood to the digestive system, heat diverts it to the skin, standing up quickly can leave it all in your feet !) try to avoid doing two many of these together ( my nightmare is goping to a buffet lunch where the air con isnt working !)
If you are like me you may well have got very anxious about all this. Thats a seperate issue and comes with lots of ather problems. Try not to think about whats going on inside you all the time. Relax. Ive read that 70% of folks get over this after a period of time.

[LisaAB]

I was just recently diagnosed after having the tilt table test with Neurogenic Dysautonomia (guessing by research it is also known as Vasovagal Syncope)  With the use of the isoproterenol during the test my BP dropped to 80 something over 20.  They have me on Atenolol 25mg. aday.  I am 29 yrs. old and have been having this problem off and on since about 1991 (kinda blew off like it was nothing)  What can I do to keep my BP up while i'm being active .. it seems that when I am active it drops some. but sitting and laying down it's normal. ERRRRRRRRRr I shouldn't have problems this early....   :(

[meandhepc]

I am SO glad to see there are others with 'NeuroCardioGenic Syncope' I was dx'd with this 5 years ago. I take 25mg of Toprol XL and 100mg of Theo-Dur for the shortness of breath. I fainted once in a grocery store check out line due to the checker was SO SLOW, first time I ever did that and it was scarey! So now I sway back and forth when I have to stand idle in public. Unfornunately I have also been taking Hep-C treatment for a year now from a blood transfusion years ago, and those meds cause the same symptoms as Syncope. My BP stays was low alot so my salt intake has increased alot, love those salty chips! I carry chips when I go off like a diabetic carries candy.... Is there a forum for people with Syncope I wonder? It would also be nice to find a doctor that knows alot about NeuroCardioGenic Syncope.

[pat57]

you did not say if they are treating the syncope. Thats the place to start. You can try increaseing salt and water, wearing compression knee high socks "Sampson" are nice med price ones.The Manufacturer is Sinvartas (spelled phonically). You can also try st. Johns wort. I do all the above plus I'm on Norpace. I've been through 6 med changes finally this is working for me. Serotonin effects the cardio vascular system thats why the St. Johns wort.  You should at least run it by your MD tho. I don't have Tachacardia, so ask first.Theres alot of behaviors that help too. I sort of run in place before standing. This helps me tremondisly. Raises the bp before you stand which lowers it and can start the episope. Aviod standing still, either sit or keep moving, you can bounce on your toes to keep the bp up some. Coffee and smoking help too..... SORRY! Never jump right up after sitting , rise slowly. And try to pace yourself, that is keep moving. If I keep the bp up through moving it makes a ton of differance for me. I take brisk walks when I feel weak and this aborts the eposide. You do have to know when its time to lay down tho, and that probably comes with experiance. I've layed down at work and in the grocery store, its better then fainting! My bp stabilizes in about 20 seconds after laying down. Since the above meds, I have not fainted. Almost a yaer now... :)

I wish you luck

[JumpyJoe]

Hi,
Since I was 8 years old, I was diagniosed with Tachycardia. Now I'm 26 and last march I was in the hospital for 4 days. They did a tilt table test, which was positive. I've been told I have Neurocardiogenic syncope. I have the same problems as many of you. I have low blood pressure, a lot of fainting spells, I always seem to be tired, dizzy, lightheaded, and sometimes I have a good day. I guess the thing that bugs me the most is, nobody is able to really help me. My job is on the line because I miss so much work. I keep running to the doctors for help, but nobody seems to feel it's a real problem. The feelings I get sometime scare me, I live alone so I worry about fainting a hitting my head. Last week I was really sick a called in to work but since I don't want to lose my job a want in the next day. Unfurtionatly, as I was about to get in my car I fainted. My friend found me unconcise laying on the ground when I came to, she wanted to call an ambulance. I wouldn't let her so I agreed to let her take me to the hospital. Which wasn't any help they did a few test, and sent me home. When I got home I called work to tell them I was ok, my boss asked me to get a release and to come in to work. It's really making me upset because what would of happened of I fainted while driving to work. Those of you who would like to talk with me, I would really like it. At least you all will understand.

[3b]

My daughter, now 22, was diagnosed with this when she was 15 by a Pediatric Cardiologist. Her symptoms were periods of rapid heartbeat, which left her tired and a little disoriented for an hour or so. She also had nausea and vomiting, weight loss, and severe sweating. In addition she started having problems with acne, her menstrual cycle, and joint pain.  The cardiologist got her heart rate under control using Florinef + Atenelol (spelled wng I'm sure). Other doctors got the other symptoms under control with other things.  She has now begun having major problems. She is extremely tired most all the time; she will faint; she has nausea, dizziness, and vomiting. There have been 2 or 3 times that she was driving and didn't realize where she was.  She had to pull off the road until she got oriented. One day last week she checked her blood pressure at work and it was 116/40, 3hours later 157/90, and 3hrs later 127/70. She misses work a lot, and she loves her work. She can no longer go to the Y to work out. The cardiologist the pediatric cardiologist referred her to has done nothing but change her meds all around. Her medical doctor had some blood work done and the 24 hour urine tests. The results were normal. He is now referring her to a different cardiologist and a neurologist. Obviously I'm frustrated. Does all this sound like Neurocardiogenic Syncope, or something else? Could the fact she is taking florinef & something else cause a false reading for the 24 hour urine test and blood work? Does this sound familiar to anyone?

[rsjonah]

My husband has been passing out for 2 1/2 years.  He has been out of work for over a year.  He has been through all the meds, 2 cardiologists, an electrophysiologist, a neurologist and even an ENT.  No one knows what to do next.  I am looking for research facilities or information on extremely difficult cases like my husbands.  Any help or information would be greatly appreciated!

[Bill H.]

Thank you all for your comments!  Its comforting to meet other who are in the same boat.  In my case, the doctors I have seen do not appear to be very experienced with this type of condition, which leaves me doubting that I've been diagnosed and treated correctly.  I would like to locate a doctor or facility that has significant experience with this type of condition in the hope that I can make more rapid progress toward treatment.  The references to the autonomic dysfunction centers at Vanderbilt University and the Cleveland Clinic sound very promising.  Has anyone here had experience with these or other facilities?  I

[ddsmsm]

Jan - thanks for the great info.  I definately will be checking those links often.

[CCF-M.D.-RCJ]

Bill,

Thanks for the post.

Neurocardiogenic syncope can be very difficult to diagnose correctly and treat.  The symptoms you describe are consistent with this disorder, but a careful insepction of the tilt-table test as well as orthostatic vital sugns are key to ensuring the right diagnosis.

There are several autonomic dysfunction centers in the United States.  I am familiar with the one at Vanderbilt University in Nashville, TN and the one here at the Cleveland Clinic.  Both are very good and should help to exclude incorrect diagnoses.

Good luck.

[HealThySelf]

Consider that your problem may be caused by the Beta Blocker.

I was prescribed Atenolol and started having near syncope episodes within a couple of months.  They might be triggered by sitting down in the car or opening the window on a hot day.  Very distressing or sitting down after exerting myself.  After recovering from the initial effects I would be sick for 2 days afterward.

After dropping the Beta Blocker, against doctor's recommendation, I never had another episode.

I do think that they cause this problem in some people.  They are prescribed by doctors because they are cheap and effective against high BP, but probably are not a good first choice for BP therapy.

I eventually got my BP controlled with a combination of the ACE inhibitor Altace and the Calcium Channel Blocker Norvasc.  More expensive, but I think healthier, and no noticable side effects.

I don't think that it is wise to take a drug that affects the autonomic system unless there is a very good reason like rythm problems.  Also I don't think diruetics are a very healthy way to control BP although they are in fashion again.

Good luck To You.

[jan]

http://groups.yahoo.com/group/NeurocardiogenicSyncope-Fainting/  just looked this up for you, two.  Is a very busy group, check it out.

Here is another site: http://216.149.163.247/cgi-bin/forumdisplay.cgi?action=topics&forum=NDRF+General+Discussion&number=1&DaysPrune=20&LastLogin=

[ddsmsm]

Bill,

I'm a 46 y/o female with the almost the same problem.  My blood pressure drops real low but can go high as well. My heart rate increases when my bp drops low.  For 18 mos. I was doing great on Atenolol, Florinef, and Paxil.  I started retaining some fluid and my pressure was high more than low so I was taken off of the Florinef.

Other symptoms I have are that I have had an unexplainable weight gain of 30 lbs. over the past 2 yrs.,  I have excessive sweating (which was lessened on Florinef), my triglycerides are high, my eyes kind of bug out at times/vision kind of blurs, headaches where my neck & head meet, tiredness (with spurts of energy some days), and waking up somewhere between 2AM and 5 AM almost every night even though I'm exhausted.  Sometimes I fall back to sleep, other times, I do not.

I've had a tilt table done - positive
I've had scans/MRIs done of the adrenals, head, orbits, sinuses, abdomen-negative
Blood/urine tests for hormones & lyme- negative
Ultrasound of the thyroid just revealed 2 tiny nodules but thyroid levels are fine.

I don't have answers for you but hopefully some day we will get answers and feel better.

[HealThySelf]

Even though you recently stopped the Toprol, it may take some time for your system to get back to normal.

I would give it some time and so some light exercise like daily walking.

I don't know about your other drugs, but you should check them out also.