question:autoimmune / vaso vegal syncope

[kathdog]

OK Ladies, I have a question for all of you. I was DX w/ IC In May 2007 and still suffering miserably w/ this condition. I am going to Dr. Moldwin, so hopefully I will get some help. However, my question relates to another condition that I was DX w/ today called “vaso-vagal syncope” (VVS). The short story here is that in Feb. 2007 all my bladder symptoms occurred: pain, burning, frequent urination. I thought I had a UTI that was then treated w/ antibiotic. Two weeks into my UTI (now know was IC) I had an awful fainting spell; I say awful because I felt like I was dying, and in fact was taken to the emergency room. Ever since that time I sometimes would get these similar episodes. Truthfully, I thought it was all in my head (you know, a panic attack or something--even though I did not feel anxious):loco:. So, finally, the heart doctor did a tilt table test and said I had vaso-vegal syncope. When he did the test my blood pressure dropped so far it was undetectable and my heart rate suddenly plummeted :help:. The reason I mention this is because from the bit of reading I have done it said that if you have an autoimmune condition you are more likely to have this problem. It seems too coincidental to get the IC and within 2 weeks have gotten VVS. I can’t help but think there is a correlation, though I know correlation does not necessarily mean causation. Does anyone else w/ IC have this VVS condition?: Thanks for reading this and thanks for any input! smile tee

[SharonA]

I have never heard of this but I just did some online searching about it.

Fainting due to vasovagal syncope occurs when your autonomic nervous system, the part of your nervous system that regulates heart rate and blood pressure, goes awry — ultimately depriving your brain of this blood supply.

The Mayo Clinic

I also found this:

Definition of Vasovagal reaction

Vasovagal reaction: A reflex of the involuntary nervous system that causes the heart to slow down (bradycardia) and that, at the same time, affects the nerves to the blood vessels in the legs permitting those vessels to dilate (widen). As a result the heart puts out less blood, the blood pressure drops, and what blood is circulating tends to go into the legs rather than to the head. The brain is deprived of oxygen and the fainting episode occurs. The vasovagal reaction is also called a vasovagal attack. The resultant fainting is synonymous with situational syncope, vasovagal syncope, vasodepressor syncope, and Gower syndrome which is named for Sir William Richard Gower (1845-1915), a famous English neurologist.

These are just two articles I found. There are many more. I did not see where it is or might be caused or even related to an autoimmune condition unless this condition involves the heart which IC does not.

[futurehope]

OK Ladies, I have a question for all of you. I was DX w/ IC In May 2007 and still suffering miserably w/ this condition. I am going to Dr. Moldwin, so hopefully I will get some help. However, my question relates to another condition that I was DX w/ today called “vaso-vagal syncope” (VVS). The short story here is that in Feb. 2007 all my bladder symptoms occurred: pain, burning, frequent urination. I thought I had a UTI that was then treated w/ antibiotic. Two weeks into my UTI (now know was IC) I had an awful fainting spell; I say awful because I felt like I was dying, and in fact was taken to the emergency room. Ever since that time I sometimes would get these similar episodes. Truthfully, I thought it was all in my head (you know, a panic attack or something--even though I did not feel anxious):loco:. So, finally, the heart doctor did a tilt table test and said I had vaso-vegal syncope. When he did the test my blood pressure dropped so far it was undetectable and my heart rate suddenly plummeted :help:. The reason I mention this is because from the bit of reading I have done it said that if you have an autoimmune condition you are more likely to have this problem. It seems too coincidental to get the IC and within 2 weeks have gotten VVS. I can’t help but think there is a correlation, though I know correlation does not necessarily mean causation. Does anyone else w/ IC have this VVS condition?: Thanks for reading this and thanks for any input! smile tee

I have a condition similar to VVS: it is called Postural Orthostatic Tachycardia Syndrome (POTS for short). People with POTS may or may not faint, but they fail the tilt table test. Failing the TTT test means that when one is vertical (sitting or standing) and stationary, they can have symptoms of orthostatic intolerance (lightheaded, dizzy, rapid heartbeat, etc. etc.)

It's no fun having both POTS and IC but I do the best I can under the circumstances. I'm sorry to hear about your two conditions.

As to whether they are related :hmm:

[Vicki]

I am thinking that Jill might have this. Maybe she will chime in. She wrote something similar about having some sort of spell a while back. I have spells that were diagnosed as vaso-vagal responses a couple of times. I have had three and they have all been within a week of having major surgery. Pretty bizarre. Am I supposed to go to a heart doc for them? -V

Look under the old posts for Jill's journal to find out about the episode she experienced.

[Kellyicurn]

I actually had a few fainting spells when I had my second flare. However, I know it was due to an allergic reaction to the antibiotic. For that matter, I react pretty harshly to the antibiotics. The ones I can take, give me such bad GI probs, I was in the ER for those issues as well. I felt like death when I went through my flare with the fainting along with GI probs, etc...it was awful. Perhaps you're also reacting to the antibiotics? Think back bc syncope is a common sign of a drug reaction-esp ab's.

Cardic ICU is my specialty. If you get syncope spells that aren't related to anything, you should def see a cardiologist- but you put it all in perspective. Some people faint and it's no big deal. Some faint bc they've had massive heart attacks- and that's completely different. So it's all relative to what the patient has going on. A relatively young person with no cardiac or pulmonary issues otherwise, would not be a huge concern- hope that makes sense.

[Vicki]

I was only on antibiotics during one of my spells. I don't faint with them. My heart rate just goes sky high all of a sudden. My pulse will be around 145 or 150 and I just feel real jittery and afraid. Twice it has happened while I was sitting on the commode trying to get urinate. It is hard for my bladder to get back to functioning correctly after a surgery, particularly if I was given morphine. So, I really end up straining while trying to get my stream started the first few times I attempt to go to the bathroom after they remove the catheter. My GP thinks maybe the spells I have are related to the anethesia meds. Who knows. It is very scary. Basically, I hope I never have surgery again because I am so afraid of having another spell. -Vicki

[Kellyicurn]

Vicki,
Straining causes syncope bc it changes your electrical conduction of the heart. I don't remember the exact science of it, but that's why you get it when you strain. It happens most often to people trying to poop. There was an episode on Scrubs about the main character having vasovagal responses-if you want a little humor on it anyway. For you, it could be that the anesthesia lowers your BP so much, the strain causes you to faint. OR you could be allergic= fast HR and fainting. The "feeling afraid" thing sounds allergic to me (most people tell me "I feel like I just wanna get the heck out of here-let me run-I might die feeling- like a panic attack). However, I wouldn't freak about it unless it's happened to you when you don't have the anesthetic bc it's prob allergic. Make note of what you got. Sounds like could be morphine.

For lay people- the heart has 2 components- electrical and muscle. VV responses are typically electrical in nature. Heart attacks are muscular, but then can attack/harm the electrical impulses= bad heart rhythm.

[kathdog]

I will look again to see where it said autoimmune. It also said that those w/ lupus and fibromyalgia are more likely to get VVS, and, as you know, those w/ IC are more likely to get fibro (I think I read if you have IC you are more likely to get lupus, too, but don't know if that is true). I did see info. that if you have a autonomic nervous system disorder you are more likely to get VVS. It is just strange that they "arrived" together.:rolleyes: :tsk::tsk:--Kathy

[futurehope]

I was the one who posted up top about having a similar condition to the original poster. I have POTS, which is a malfunctioning of the autonomic nervous sytem.

I can tell you for a fact that straining can cause a vaso-vagal response or faint.

Also, morphine, or any pain med makes me deathly ill. My body has difficulty adjusting blood pressure on a normal day, and these meds are counter-productive for me. It's easier for me to feel faint on any of these meds. I avoid them.

Also, FYI, people with VVS (or NCS neurocardiogenic syncope) or POTS often have a feeling of anxiety along with a rapid heartbeat. In my case, it is the body's normal response to a falling blood pressure. Your body is trying to get the blood up to where it needs to be, and if the blood pressure is falling (or not adjusting properly), you will wind up on the floor, so the body compensates and increase the heartrate. This can make you feel nervous or anxious.

Medications, and esp. pain meds, can cause blood pressure to drop. They are ANS depressants, I think. These meds, consequently, can cause all kinds of weird reactions in me as my body tries to compensate.

Just a word of caution...sometimes the feeling of anxiety has nothing whatsoever to do with nervousness, but everything to do with the body trying to keep you upright. It may be that adrenaline is pumped into the circulatory system to keep everything functioning. I believe the same "jitters" occur when your blood sugar drops too low. Your body is under stress (from low blood pressure, or low blood sugar, or something) and adrenaline gets pumped out and you feel nervous.

[Vicki]

My mom has something in her heart called a left bundle block that has to do with the electrical system. However, she does not have spells like I do. I do have insanely low blood pressure. Several times when I have had my BP taken the nurse will take it with an auto BP machine and then check it manually because they don't believe it. It has been as low as 85/52.

[theclownster]

Hi there! I don't have what you are talking about, but my husband was diagnosed with Neurocardiogenic Syncope (also referred to as vaso vagal by some) after passing out after being seriously sick (so sick he had to be hospitalized all three times). When he gets really really sick (vomitting and such) after a period of time it will happen. It's pretty scary when it happens. He looks like he's having a seizure and sometimes turns blue (not fun to be there for when it happens). His primary care doctor explained that going to the bathroom can sometimes induce this type of response (he explained it in medical terms and what happens with your body, etc. - I just can't explain it like him.) It really made sense.

He now sees a cardiologist who diagnosed the neurocardiogenci syncope. The cardiologist explained neurocardiogenic syncope to us is that it is the most common reason people pass out like this. They don't know exactly what causes it or how to cure it (sound familiar? - like IC). What they explained in everyday language (not in medical talk) is the idea that when his body's blood pressure rises and he's in medical stress (serious illness) his body responds by dropping the blood pressure really low - causing him to pass out. The cardiologist did lots of tests on his heart and says he has a healthy heart, it's just how he is wired. Since they don't have a cure, they use a couple of different types of meds that seem to help it - yet they aren't exactly sure whythey help. He originally started on one medication and then they repeated his table tilt test about 2 months after starting it. He failed the table tilt test again and this time got a new cardiologist. The new cardiologist said he likes to use a low does of certain anti-depressants that seem to help. He also told him he could use salt liberally (to help keep his blood pressure up) - he did say you don't usually get a doctor that tells you to use more salt but for him it could help. There are also some diet restrictions that now that I think of them sort of follow the IC diet. One is caffeine. They want him to watch his caffeine intake and if he drinks a cup of coffee, he's suppose to drink a large glass of water afterwards. The important thing the Dr's said was to make sure he is hydrated.

Since this only happens when he is seriously ill, they have not placed any other restrictions on him. The cardiologist said that this condition itself is not life threatening. Yet, if he hurts himself when he passes out and falls, then they need to monitor any injuries. As a precaution, in the future once he gets sick enough, I'm going to take him to the ER so they can put him on IV fluids to keep him hydrated. So far, he seems to be doing well. The doctor also advised that he not drive whenever he is sick. So he doesn't. He's treated this very seriously. I must say, as his wife, it's very scary. He also becomes quite confused and disoriented after an episode - he can be arugumentative and somewhat combative (not on purpose) kind of like when you wake up from a scary dream. When he's feeling better, he has no memory of what happened. My husband is also a type 2 diabetic - and when this happens his blood sugar goes way out of whack which could be contributing to how serious these episodes are.

It was very scary when he was first diagnosed. Now, we both know what it is and how to respond and try to prevent it before it happens. My hubby usually can tell me somethings not right (he doesn't know what) but once he tells me that, I can tell by looking at him what will happen. He also had an episode after being under anesthesia once.

Okay, so I probably told you much more than you wanted to know. Just thought some of it might help. Sorry it's such a long post.

I hope you are feeling better soon!

Take care,
Jennifer

[kathdog]

Everyones input was very helpful. Thanks, kathy