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neurally mediated syncope :(
I've lived with neurally mediated syncope for many years now. I'm nearly 20 and it started when I was 12. I'm really needing an opinion on what to do. I AM about to go back to my heart doctor to look at different treatments because the use of a beta blocker w/ an antidepressant combo treatment didn't make any difference a few years ago. I want to know what kind of sure treatments there are as I really can't live like this. My symptoms include, lightheaded all the time, headaches, hot flashes, sweats, chills, severe migraines, ringing in the ears, hard beating heart, fogginess of mind, panic, anxiety... PLEASE HELP!!
Just a comment on getting a pacemaker. For those with conditions like Neurally Mediated Syncope a pacemaker can actually make the condition worse so it is not normally a recommended course of treatment.
Hi,
I have been suffering from what i was first told was, 'vasal vagal syncope' since 2005 while 20 weeks pregnant with my second child. Previous to this i had never had any trouble!!
I was seen by a cardiologist and perscribed corboten...a betta blocker..."safe" while pregnant...
During the remainder of the pregnancy i experienced many of the typical symptoms i still face today, ( although more intence and frequent whilst pregnant,) such as; palpitations, dizziness, nausea, syncope, forgetfullness, thirst, fatigue, hot flashes, sweating, extreem reactions to change in temperature,etc...Plus i also have noticed during that time of the month i am more prone to collapse.
We gave birth to a healthy ( thank goodness - was very worried due to all the collapse episodes!!) baby girl in 2006- and experienced Post natal depression...However i think mainly due to the fact that the cardiologist was convinced as was i that once the baby was born my condition would most likley go away....
My condition seemed to get better once i was precribed the anti depressant... in did not have as many episodes and if i did experience a syncope eppisode the period of un-conciousness was lessened.
We moved interstate and i began to get back to life as normal and actually had a three month stint without a single episode.
Then it gradually began to come back once i discontinued the anti depressant.
I lost 20 kg in weight also however it seemed to not make an ounce of difference.
Being rural based now we saw another cardiologist on arrival after my 3rd syncopal episode, whom perscribed "fluronieff.."
(Sorry i have forgotten its proper name)
Which was to basically help with fluid and salt...
However during this time it was a stressfull period in my life and it did not seem to do anything except add 5 kg to me within 2 weeks and no change in the syncopal episodes.
With this going on for months on and off...
FINALLY was refered to a cardiologist in 'town' melb..at Cabrini Host...
Whom discovered i have a 'facinating' junctional rythm and called my condition, 'neuocardiogenic vasal vagal syncope.'
He then prescribed me rythmodan ( sorry again as i am unsure of its actual medical term)
begining at 50mg a day and increasing to 250mg a day over a period of 7 months, to which a lesser amount of syncope occured- however still not managable!!! ( WILL CONTINE)
I have been suffering from what i was first told was, 'vasal vagal syncope' since 2005 while 20 weeks pregnant with my second child. Previous to this i had never had any trouble!!
I was seen by a cardiologist and perscribed corboten...a betta blocker..."safe" while pregnant...
During the remainder of the pregnancy i experienced many of the typical symptoms i still face today, ( although more intence and frequent whilst pregnant,) such as; palpitations, dizziness, nausea, syncope, forgetfullness, thirst, fatigue, hot flashes, sweating, extreem reactions to change in temperature,etc...Plus i also have noticed during that time of the month i am more prone to collapse.
We gave birth to a healthy ( thank goodness - was very worried due to all the collapse episodes!!) baby girl in 2006- and experienced Post natal depression...However i think mainly due to the fact that the cardiologist was convinced as was i that once the baby was born my condition would most likley go away....
My condition seemed to get better once i was precribed the anti depressant... in did not have as many episodes and if i did experience a syncope eppisode the period of un-conciousness was lessened.
We moved interstate and i began to get back to life as normal and actually had a three month stint without a single episode.
Then it gradually began to come back once i discontinued the anti depressant.
I lost 20 kg in weight also however it seemed to not make an ounce of difference.
Being rural based now we saw another cardiologist on arrival after my 3rd syncopal episode, whom perscribed "fluronieff.."
(Sorry i have forgotten its proper name)
Which was to basically help with fluid and salt...
However during this time it was a stressfull period in my life and it did not seem to do anything except add 5 kg to me within 2 weeks and no change in the syncopal episodes.
With this going on for months on and off...
FINALLY was refered to a cardiologist in 'town' melb..at Cabrini Host...
Whom discovered i have a 'facinating' junctional rythm and called my condition, 'neuocardiogenic vasal vagal syncope.'
He then prescribed me rythmodan ( sorry again as i am unsure of its actual medical term)
begining at 50mg a day and increasing to 250mg a day over a period of 7 months, to which a lesser amount of syncope occured- however still not managable!!! ( WILL CONTINE)
(CONTINUEED)
Now we are at current date...
I asked for a referal to a neurologist and to be given the tilt test.
Within the findings i am waiting for my neuorologist appointment on monday for results.
However my notes from the test say that i have "a predisposition to neurally mediated hypotension as well as chronic accelerated juntional rythmn."
I am hoping for some guidance from you all!!!
Do any of you suffer form this??
What medications worked for you??
Do you have any assistance from the local community/gov??
Have your medications been approved on pbs?
I know that these might seem like monetry questions..
But as i have a pre existing condition my health fund will not cover me..and i have two young children under 5 and a husband in afghanistan with the defence force.
I am limited for reasorces and have had no luck in finding any information in regards to any type of support group!
Especially as this condition/conditions alike have so many names!!!!!!!
Also have any of you been able to have your condition recognised by centerlink??
And i also have tried google-ing these condition/conditons and have seen alot of documentation in regards to Chronic Fatigue...
What are your thoughts on this????
LOOKING FORWARDS TO RESPONCE
Brooke
Now we are at current date...
I asked for a referal to a neurologist and to be given the tilt test.
Within the findings i am waiting for my neuorologist appointment on monday for results.
However my notes from the test say that i have "a predisposition to neurally mediated hypotension as well as chronic accelerated juntional rythmn."
I am hoping for some guidance from you all!!!
Do any of you suffer form this??
What medications worked for you??
Do you have any assistance from the local community/gov??
Have your medications been approved on pbs?
I know that these might seem like monetry questions..
But as i have a pre existing condition my health fund will not cover me..and i have two young children under 5 and a husband in afghanistan with the defence force.
I am limited for reasorces and have had no luck in finding any information in regards to any type of support group!
Especially as this condition/conditions alike have so many names!!!!!!!
Also have any of you been able to have your condition recognised by centerlink??
And i also have tried google-ing these condition/conditons and have seen alot of documentation in regards to Chronic Fatigue...
What are your thoughts on this????
LOOKING FORWARDS TO RESPONCE
Brooke
I was diagnosed with neurally mediated syncope in March of 2008. I was given the tilt table test prior to my diagnosis. I was prescribed Florinef and Metroprolol (beta blocker) it seemed to work unitl recently when some unexpected things happened causing more stress. I went from no episodes to 3 in the last week. With my episodes I get hot flashes, sweating, lightheadedness, racing and pounding heart, shortness of breath, and if it's bad I pass out.
I went to the cardiologist today and he ordered another tilt table test and depending on the results he wants to to an invasive test where they go in through the artery in the groin and up to the heart to stimulate the heart.
I am a single mom to a 6 year old and have had no luck finding any sort of support group or anyone else with a similar condition.
Jessica
I went to the cardiologist today and he ordered another tilt table test and depending on the results he wants to to an invasive test where they go in through the artery in the groin and up to the heart to stimulate the heart.
I am a single mom to a 6 year old and have had no luck finding any sort of support group or anyone else with a similar condition.
Jessica
I was diagnosed with Neurocardiogenic Syncope (NCS) in, I think, 2005. I have been a fainter since I was a teen ager. But usually, just when standing in a line and getting hot, or having a bad fall or getting hurt in some way would make me faint. But then I started to faint for no reason. I woke up next to my bed on the floor, disoriented, and had no idea how I got there or even where I was for a moment. It was scary. Then I realized my head hurt, I hit it on my bedside table. That week, I fainted again in my master bathroom after just getting out of bed. Hit pretty hard on the linoleum floor. My husband, for the first time, heard that fall since he was in the bedroom and it scared him. He said I had to go to the doctor and see if there was something wrong.
MY GP sent me to a cardiologist who ran a lot of tests, the last one was a tilt table and I fainted on it after 21 minutes ( a pretty long time, I thought I would not be fainting and they were wasting their time, but they were very patient). My heart quit beating for 8 seconds. I woke up very slowly, pale as a ghost and cried. I guess the reality of my fainting hit me and I knew that there was definitely something wrong with me. My Cardiologist started me on Atenolol before bed and I am one of the lucky ones. No faints since.
The only problems I have now are HEAT (so vacations to Arkansas in August just don't work!) and standing too long. I get very hot easily, get dizzy easily, and can't move too quickly. Lately, I am having migraines again and muscle aches. But I also have RA.
Those of you with NCS or neurally mediated syncope are not alone. There are a lot of us out there.
MY GP sent me to a cardiologist who ran a lot of tests, the last one was a tilt table and I fainted on it after 21 minutes ( a pretty long time, I thought I would not be fainting and they were wasting their time, but they were very patient). My heart quit beating for 8 seconds. I woke up very slowly, pale as a ghost and cried. I guess the reality of my fainting hit me and I knew that there was definitely something wrong with me. My Cardiologist started me on Atenolol before bed and I am one of the lucky ones. No faints since.
The only problems I have now are HEAT (so vacations to Arkansas in August just don't work!) and standing too long. I get very hot easily, get dizzy easily, and can't move too quickly. Lately, I am having migraines again and muscle aches. But I also have RA.
Those of you with NCS or neurally mediated syncope are not alone. There are a lot of us out there.
Wow, this is so odd that 3 years since I made this post, I decided to look into my condition again and I randomly found my post that I made!! I had totally forgot I even made this post.. It's great to hear some more comments on actual people who suffer from this like I still do. beta blocker + anti-depressant are what I've been on for quite sometime. I got off it for awhile, but I realized that I couldn't do without it. I'm not as severe as some of you and have only probably passed out during the tilt table test, which confirmed the condition a few years back (right after I wrote this post I think) I apologize for ever being rude in my posts on here. I've grown up a lot since then, been through college and have a wife and kid, so things are different. It's just sad that we still have to suffer with feeling like crap often due to this disease. I hope they come up with some new breakthrough's and realize a lot more people have it. If any of you ever know somebody who says they feel dizzy or light headed a lot, let them know they could have this. It's horrible thing to have. I've had it since I was 12. Starting out with severe migraines caused from the constant changes in blood pressure throughout the day. I have attacks frequently , almost constantly throughout the day but never actually pass out, so it would be the pre-syncope. But It's horrible to feel lightheaded, fuzzy, ears ringing, and have migraines all the time that often throughout your day.. I'd almost rather just pass out a few times a day, lol.. I could go on and on how this disease has affected my life, but I won't waste my breath. I'm just happy to see 3 additional posts from people suffering too after I magically stumbled upon my OWN post 3 years later ;). IF ANYBODY is following this anymore, please comment, i'll check back in often now that I see some others suffering --- Thanks so much
--Andrew
--Andrew
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