It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-30-2002, 11:15 PM   #1
Junior Member
 
Join Date: Jan 2002
Location: Illinois
Posts: 24
Marykate HB User
Question Vasovagal syncope and SLE

Looking for information on vasovagal nerve response/vasovagal syncope/neurocardiogenic syncope/neurally mediated hypotension as a manifestation of systemic lupus erythematosus. Does anyone know if there's a connection? Thanks in advance.

 
Old 05-28-2002, 01:28 PM   #2
Senior Member
(female)
 
Join Date: Feb 2001
Location: NJ
Posts: 266
Starbuk498 HB User
Post

MaryKate,

Wow, first off let me tell you that this is very wierd! Me reading and replying to this post.

I was diagnosed with Lupus now almost 10 years ago, and have had my ups and downs. But, about 6 years ago, I got very very sick one day with a stomach ache and that night, I was in very bad shape. I had the feeling that I was going to pass out......needless to say, I knew enough to wake someone up in my family to help me out, but when they got to me, I was already out cold. I fell forward and hit my head on the outside frame molding of my bathroom door and slid down somewhat. It was truly amazing that I didn't break my nose. Anyway, an ambulance was called and my vitals were pretty bad....right around 90/54. When I got the the hospital, I underwent some tests.....and the following morning, I was told that I had Vasovagal Syncope. They new I had Lupus......but never said that the 2 were related. They thought it might have been brought on by a virus.

Anyway, all these years, I have wondered it it had anything to do with my Lupus......and maybe there was some kind of a connection. I guess we'll never know.
Nothing even close to that has happened since..so I guess all is well.

Regards,
Stefanie
__________________
~Starbuk498

 
Sponsors Lightbulb
   
Old 05-30-2002, 04:52 PM   #3
Junior Member
 
Join Date: Jan 2002
Location: Illinois
Posts: 24
Marykate HB User
Post

Hi, Stefanie. Thanks for your response, and I'm glad to hear you survived your "episode." I do have two questions, though. If you remember, might this have happened around the time of your menstrual cycle? Also, you mention you had "stomach flu" symptoms just before you fainted. Do you happen to recall if you might have been dehydrated? Again, thanks.

Stay well,

Marykate

 
Old 06-04-2002, 10:40 AM   #4
Senior Member
(female)
 
Join Date: Feb 2001
Location: NJ
Posts: 266
Starbuk498 HB User
Red face

Marykate,

Yes.....when the paramedics came and took my vitals...and did some other asessments......they immediately started me on a bag of IV fluid. The hospital was only 2 miles down the road, and by the time we got to the hospital, the first bag was already emptied in me! They gave me 2-3 more bags after that.....and I can't tell you how many times I had to get up to pee after that!!! I was released the next day and never have had another episode again.

But, yes. they told me that it was also severe dehydration along with the vaso vagal syncope....

Thank god nothing even remotely close to that ever again.

Regards and god bless....thanks for responding to the post!

take care! :wave"
Stefanie
__________________
~Starbuk498

 
Old 06-04-2002, 10:42 AM   #5
Senior Member
(female)
 
Join Date: Feb 2001
Location: NJ
Posts: 266
Starbuk498 HB User
Post

MaryKate,

One more thing......I don't remember if it was around my cycle though.....it was back in 1995!!

REgards,
Stef
__________________
~Starbuk498

 
Old 08-09-2008, 10:56 AM   #6
Newbie
(male)
 
Join Date: Aug 2008
Location: Waco, Texas, USA
Posts: 4
Goliad67 HB User
Re: Vasovagal syncope and SLE

In regard to syncope with your lupus condition, have those of you who experienced passing out, found yourself to be numb for several minutes to perhaps as long as 3 hours? If so, another suggestion to ask your doctor, if he or she is very alert, is wheter your lupus condition includes Antiphospholipid or Anticardiolipin positive antibodies? This a very serious if so, but usually involves, (eg my daughter has severe systemic lupus), some TIA (transient ishemic attacks) or "mini-strokes". But every case of lupus varies a lot, and makes differential diagnosis very difficult. Otherwise, I am very much frustrated by yet another disabled family member, my wife, who had gastric surgery, (Nissen Open Fundoplication surgery in July, 2006,,which I am 100% positive started her on the road to constant fainting with a minimum of exertion,,standing still, and sometimes even sitting, in conjunction with perhaps a warm meal, or a modestly very warm room, (over 76 degree F) with many doctor visits elicited several occasions of syncope, where her BP varied from high to normal, sometimes to low BP readings and often bradycardia, but not bradycardia every time. It has been referred to over 20 specialists in every field who absolutely cannot come up with any heart condition, even with extensive testing, other than occasional bradycardia with the persistent syncope that finally evoked a diagnosis of Neurocardiogenic Syncope, OR Neurally Mediated Syncope due to the fact that bradycardia was more the problem than tachycardia typical of POTS. Thus now after 2 years of fainting, my wife has not ventured out of our home but once or twice for fear of this horribly disabling problem that 7 cardiologists have disagreed on diagnosis. Two at Ohio State U. Ross Cardiac Center suggested a pacemaker was indicated, and my wife was in no mood nor condition for another traumatic surgery after only 4 months since the stomach surgery. Other cardiologists ( including electrophysiology cardiologists) have said a pacemaker would be no good as at least 2 heart monitoring devices (Holter type, and other 10 days recordings) indicated NO heart condition was present to indicate a pacemaker would be of any benefit. Thus she lives with what must be Neurally Mediated Syncope, which occurs in any heat condition outdoors, or indoors that bring on syncope for an average usually of about 5-10 minutes duration. During those episodes, she simply loses conciousness, but maintains color, no sweating, and a good pulse is obvious by the pulsation of her carotid artery area of her neck. BPs vary from normal to high, or on occasions with bradycardia to pulse rates in the 40's to 50's from her normal 72-82 ranges on most occasions. But she continued to faint for at least 18 months, and since has confined herself to home just to avoid fainting in any more public places. This is very confining, but she is sick of many doctors, in every field who have had multiple dealings with this, plus the constant ER visits we grew sick of encountering, that rendered NO diagnosis other than idiopathic syncope. We are not very able to drive or fly long distance to Mayo, or Vanderbilt perhaps more suitable for very difficult diagnoses that may prove no better than our local hightly touted Scott and White Clinic/Hospital which is the major center for our central Texas location. But the doctors who there who have tons of records on these events have little to offer other than treat her like she is a "basket case"?? I am very much losing faith in any doctors anywhere to understand and adequately treat this condition. Fiorinef and Midodrin have not been of significant benefit and make her sick. But this is the only answer the cardiologists can come up with. It's very alarming and she is on numerous medications that can produce side effects further worsening any diagnostic continuation. In my opinion, after over 40 years being around doctors, this is obviously a condition none of them are competent to treat with good results.

 
Old 08-09-2008, 11:02 AM   #7
Newbie
(male)
 
Join Date: Aug 2008
Location: Waco, Texas, USA
Posts: 4
Goliad67 HB User
Re: Vasovagal syncope and SLE

In regard to syncope with your lupus condition, have those of you who experienced passing out, found yourself to be numb on one side for several minutes to perhaps as long as 3 hours? If so, another suggestion to ask your doctor, if he or she is very alert, is whether your lupus condition includes Antiphospholipid or Anticardiolipin positive antibodies? This is very serious if so, but usually involves, (eg my daughter has severe systemic lupus), some TIA (transient ishemic attacks) or "mini-strokes". But every case of lupus varies a lot, and makes differential diagnosis very difficult. Otherwise, I am very much frustrated by yet another disabled family member, my wife, who had gastric surgery, (Nissen Open Fundoplication surgery in July, 2006,,which I am 100% positive started her on the road to constant fainting with a minimum of exertion,,standing still, and sometimes even sitting, in conjunction with perhaps a warm meal, or a modestly very warm room, (over 76 degree F) with many doctor visits elicited several occasions of syncope, where her BP varied from high to normal, sometimes to low BP readings and often bradycardia, but not bradycardia every time. It has been referred to over 20 specialists in every field who absolutely cannot come up with any heart condition, even with extensive testing, other than occasional bradycardia with the persistent syncope that finally evoked a diagnosis of Neurocardiogenic Syncope, OR Neurally Mediated Syncope due to the fact that bradycardia was more the problem than tachycardia typical of POTS. Thus now after 2 years of fainting, my wife has not ventured out of our home but once or twice for fear of this horribly disabling problem that 7 cardiologists have disagreed on diagnosis. Two at Ohio State U. Ross Cardiac Center suggested a pacemaker was indicated, and my wife was in no mood nor condition for another traumatic surgery after only 4 months since the stomach surgery. Other cardiologists ( including electrophysiology cardiologists) have said a pacemaker would be no good as at least 2 heart monitoring devices (Holter type, and other 10 days recordings) indicated NO heart condition was present to indicate a pacemaker would be of any benefit. Thus she lives with what must be Neurally Mediated Syncope, which occurs in any heat condition outdoors, or indoors that bring on syncope for an average usually of about 5-10 minutes duration. During those episodes, she simply loses conciousness, but maintains color, no sweating, and a good pulse is obvious by the pulsation of her carotid artery area of her neck. BPs vary from normal to high, or on occasions with bradycardia to pulse rates in the 40's to 50's from her normal 72-82 ranges on most occasions. But she continued to faint for at least 18 months, and since has confined herself to home just to avoid fainting in any more public places. This is very confining, but she is sick of many doctors, in every field who have had multiple dealings with this, plus the constant ER visits we grew sick of encountering, that rendered NO diagnosis other than idiopathic syncope. We are not very able to drive or fly long distance to Mayo, or Vanderbilt perhaps more suitable for very difficult diagnoses that may prove no better than our local hightly touted Scott and White Clinic/Hospital which is the major center for our central Texas location. But the doctors there who have tons of records on these events have little to offer other than treat her like she is a "basket case"?? I am very much losing faith in any doctors anywhere to understand and adequately treat this condition. Fiorinef and Midodrin have not been of significant benefit and make her sick. But this is the only answer the cardiologists can come up with. It's very alarming and she is on numerous medications that can produce side effects further worsening any diagnostic continuation. In my opinion, after over 40 years being around doctors, this is obviously a condition none of them are competent to treat with good results.

 
Old 08-22-2008, 09:44 AM   #8
Junior Member
(female)
 
Join Date: Apr 2003
Location: Colorado
Posts: 23
Lisa'65 HB User
Re: Vasovagal syncope and SLE

Yes, there is a connection. I have SLE and a severe case of POTS, as well as Atrial Fibullation. My cardio says that the lupus is the cause. He tested me for different viruses that can cause what you mentioned and POTS, which was negative. The test for seeing if you have what you mentioned as well as POTS is called "tilt test". It rules in/out this condition. I failed it miserably! Wearing the support hose that goes up to my waist and increasing my fluid & salt intake has helped my fainting/dizzy spells and my chronic muscle pain in my arms and legs due to the abnormal blood pooling in my lower extremeties. So far I have not had to start taking the Midodrine my cardio prescribed. Up until I got correctly diagnosed with the POTS, I was told that I had fibroymyalgia. I hope this info helps!
__________________
Lisa

 
Old 08-23-2008, 06:46 AM   #9
Newbie
(male)
 
Join Date: Aug 2008
Location: Waco, Texas, USA
Posts: 4
Goliad67 HB User
Re: Vasovagal syncope and SLE

At best, I find the multiple problems vary so much individually, that it's very difficult to make these symptoms as necessarily associated with lupus. Some seem to have strictly this Neurally mediated sycope problem with associated heart activity that may be a normal sequel to the vasovagal injury. If there is no heart condition found, as in my wife's case, other than what often occurs with fainting from a cerebral caused source involving apparent vagus nerve problems, the question is just WHEN does this become a more recognized heart involvement. We have been to the local, big HMO clinic with extensive diagnostic testing plus testing done in an Ohio State Medical cardiac unit where my wife was taken after these fainting spells occured while visiting her family. The results from these centers varied from two cardiologists at the OSU unit suggesting the resulting bradycardia required placement of a pacemaker. This was not acceptable due to the recent traumatic fundoplicaton surgery. Midodrin and Florinef proved to be intolerable, and while my wife has some deep venous pooling in the lower extremities, she could not tolerate the greatly uncomfortable tight hose suggested as a needed method to prevent this pooling. Some months later, with continued occasional syncope upon any exertion, she was found in a diagnostic hospitalization to NOT have a positive tilt table response, (that I find questionable) which is contrary to earlier findings in Ohio. The 3rd Ohio electrophysiology cardiologist said a pacemaker would NOT be advisable due to no heart findings, and would only allow her to faint "with a good heart beat",,ie, stopping the accompanying bradycardia in the range of 35-45 BPM. But the origin of these syncope spells would continue nevertheless. So we have conflicting opinions from at least 6 cardiology "experts" and my wife now has confined herself to very limited activity to none staying at home. She is virtually a "prisoner" to this condition, of short breath and fear of more ER visits that consistently result in no findings other than "idiopathic sycope". This persistent non-diagnosis is frustrating, due to the common referrals for psychiatric evaluations that have for years been present with the already known depression problems that have been prematurely judged as what must be the problem, with treatment-resistant characteristics to anti-depressant therapy. This "cop-out" by some doctors has disgusted my wife and me who know this only recent problem is NOT due to psychiatric emotional responses, but a new development following surgeries for severe GERD and a kidney stone quickly treated 3 weeks later with lithotripsy 2 years ago. It was ONLY then that she developed syncope problems. I always wonder if all these gurus are missing something? Monitors for up to 10 days never revealed any abnormality of the heart during all this testing, and lupus is a severe disease that only has mostly disabled our daughter, but an entirely different set of problems,,not syncope. Thus my wife's syncope problems do not appear related to a lupus condition. We are in a standby situation that is very frustrating.

 
Old 08-23-2008, 12:34 PM   #10
Junior Member
(female)
 
Join Date: Apr 2003
Location: Colorado
Posts: 23
Lisa'65 HB User
Re: Vasovagal syncope and SLE

Goliad67, I can totally empathize with what you are going through with trying to get your wife some help and...my husband can, too. I started having health issues 10 yrs ago and have gone to many specialists trying to get some help and answers, to only get told that it was psychological and be dismissed because they had no clue what to do with me because I didn't fit any classic condition (too many symptoms). We had no respect for doctors and decided to just deal with my problems until...I started progressing fast and going towards being wheelchair bound. We did our research and found a neurologist who is like the TV show doc "House" and loves tough cases. My hubby moved us from FL to CO to see this guy. And thank goodness he did! I am finally getting some answers and help without being told that I'm just crazy. Instead of being "crazy", I have SLE, POTS, and Narcolepsy w/ cataplexy...therefore the reason for multiple symptoms. I hope your wife soon gets the much needed help she needs. Warm wishes~*
__________________
Lisa

 
Old 08-23-2008, 03:02 PM   #11
Senior Veteran
(female)
 
Join Date: May 2003
Location: Virginia, USA
Posts: 2,354
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: Vasovagal syncope and SLE

Hi Goliad67 -
You have my sympathy. We lived in your town for 10 long, hot years which included my lupus dx after we'd been there for 7 years and if he's still in practice, I can recommend my most excellent rheumie Dr Fung to your daughter. Bummer to have to avoid that TX sun, but sunshine makes the lupus symptoms so much worse and can cause a flare. For your daughter I recommend The Lupus Book by Dr. Daniel Wallace and I remember that the Waco Library has several copies. We had much frustration with local medical folks with my DH's cardiac problems and he decided many are there because they cannot be in a better location. We also knew more folks with medical problems there and had to wonder why.

Wishing each of you well - Barbara
__________________
Betty

 
Old 08-24-2008, 06:07 AM   #12
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,960
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Vasovagal syncope and SLE

Goliad, Has your wife seen specialists other than cardiac? I think there are quite a few *noncardiac* causes for syncope; so I started wondering if she & you had explored all the differential diagnoses.

My mother & father had *occasional* fainting spells that took years to understand. My father ultimately developed Parkinson's; my mother had a subarachnoid brain aneurysm. (Both might have been helped by a competent neurologist.)

On a lighter scale, my sister had frequent spells of dizziness, breathing problems, & irregular heartbeat. Her problem turned out to be hypothyroid, once she finally saw an endocrinologist. My own spells seem to have been, in retrospect, autonomic nervous system disruption. I was Dx'ed with lupus & have been helped greatly by medication.

But the thing that most strikes me about your post is the duration of your wife's episodes. The ones I described above were of short duration. If you looked into various causes of syncope, I wonder in how many there's a possibility of spells lasting this long?

I'm sorry for her troubles, and yours, and hope that you find help soon! Sincerely, Vee

 
Old 08-25-2008, 01:39 PM   #13
Newbie
(male)
 
Join Date: Aug 2008
Location: Waco, Texas, USA
Posts: 4
Goliad67 HB User
Re: Vasovagal syncope and SLE

My thanks to Barbara and Vee for your replies. Yes, this is a tough place to live, and I often wonder about the various things indigenous to this area are causative where lupus is concerned. It gets so complicated, and I find no two cases of serious lupus are alike.
As far as competency of doctors, and who to see? We have been the gamut to every possible specialist, and cardiologists as well in Ohio, plus Psychiatrists, neurologists (2), and endocrinologists who differed on the use of Cytomel in addition to Synthroid for my wife's iatrogenic created (RAI) thyroid hypotoxicity that may have been a factor in some of these problems regarding the many syncope events that became all too common every week when she went out shopping for whatever. Several times, the EMS people were called, and I had to go intervene after over 7 trips to the ERs which came up with nothing after these briefs spells of unconciousness occured out of nowhere. Heat and standing became big factors, and now after so many doctors, and 3 hospitalizations, we both are disgusted with this whole bunch down here. I think some are OK, and others have decided my wife is just a basket case due to our daughter's dire prognois for the next few years. The Lupus was significant in causing some depression, but my wife only worsened with these fainting spells long after that terrible diagnosis in our daughter. I have heard of Dr. Fung, in Waco, but we use a well-regarded rheumatologist Dr. Jundt, (formerly with the highly touted Scott and White Medical Center with it's huge public relations dept as a "Top 100 Hospitals in America" banner proudly displayed across the front main bldg. I would have to dispute that claim as would many who are referred to this very politically involved hospital and training center. I do believe we have some inadequate doctors in this area that pass as "experts" but several have dismissed my wife's case as "idiopathic syncope", and infer all this to be merely relative to mental stress. I think those who do think this are dead wrong, but have little choice to go elsewhere in our fragile financial and physical shape. My wife is too scared to even get on an airplane, our daughter is on many toxic meds for the lupus, and we are too wiped out financially to go anywhere else. Thus we are now homebound, except for me being the only caretaker, and my spouse does not want to see any more doctors. It's a bad situation. But she was told by an anesthesiologist a few years ago that her BP drops precipitously under general anesthesia. The operations, and syncope that developed on a constant basis occured after two surgeries within 3 weeks in July, and Aug, 2006. After all the fainting trips to the hospital, this year 2008 has left my wife now too fearful of having a breast lump (estimated to be recurrent benign fibrocyst) removed, nor any more doctors with this problem of anesthesia possible caused syncope problems. I am lost as to what is going on, and these doctors are no help. Thus she has been homebound without any more syncope events, but shortness of breath and no energy persist. It's a Catch-22. All these various specialists are highly recommended, but cannot give us any answers. So it's no wonder she prefers to stay confined at home.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Pacemakers With Severe Vasovagal Syncope rhanna2 High & Low Blood Pressure 0 02-13-2010 12:35 PM
Anybody had this Happen? crookedback General Health 19 06-08-2007 07:05 PM
lupus/ vasovagal syncope (neurocardiogenic syncope) mtm9138 Lupus 5 02-13-2005 11:17 AM
Neurocardiogenic / Vasovagal Syncope collardak Heart Disorders 15 09-13-2004 02:41 AM
Vasovagal syncope associated with SVT? kiley426 Heart Disorders 2 02-07-2004 12:54 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (173), ladybud (43), AngelicBrat (16), luca689 (7), ksp (6), neveragain444 (6), luvinmusiq (5), brooklyngirl (4), Daisygrace (4), AgedFlowerChild (3)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (671), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 10:34 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!