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neurally mediated syncope :(
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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!!
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21064_tn?1309312333
Do you have actual syncope?  Do you have pre-syncope?  If you are passing out, maybe the doctor will be able to suggest a different medication.
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Have you been to the potsplace.org web site.? They have quite a bit of info on Neurocardiogenic Syncope (NCS), also called neurally mediated syncope or vasovagal syncope.  They outline a wide range of treatments.  You can perhaps use that as a starting point to find out more info on each.

Has your cardiologist diagnosed your condition as being neuraly mediated syncope?
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dont be "about to go back to the doctor" if you have these concerns.  Go to her/him and ask for multiple recommendations and then study them before choosing.  (hey guys, notice I put HER first!)
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Avatar_n_tn
I'm pretty sure it's presyncope, I never actually pass out, but I always feel on the verge.  Actually, for this last year, it's been more hot flashes and cold chills and headaches rather than lightheadedness...   none better than the other.
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I want a pace maker, any comments?
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Absolutely.......get one....they are great for hot flashes, headaches, chills, sweats, migraines, ringing in the ears and panic.  Everyone should have one.
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are you serious or kidding?  How easy would it be to get a doctor to get you one and how much do you pay? does insurance cover any of it.  

Also i had another question.  How does alcohol affect this syncope stuff because I drink often.  Also, it seems like if i lay down and read, i get the lightheadedness more and when I'm moving about, I get the hot flashes... Any ideas?  And does anybody know if this condition is life threatening or does damage to the heart over time and decrease life expectancy? Thanks.
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21064_tn?1309312333
The pacemaker response was an attempt at a "joke."  

My dad has had a pacemaker for years and I do know that it was placed because of a slow heartbeat.  I don't think you could "convince" your doctor to give you one.  A responsible doctor will insert one IF you need one.

Typically, health insurance will consider payment on pacemakers.

As for whether alcohol plays a role, it would be pretty easy to find out....Try going without and see if you notice a differnce.  Have you seen a cardiologist?  What have they ruled out?
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is there any real doctors on here to answers questions fully for you??  You guys haven't answered any of my questions.  I just want other opinions, so I don't have to drive around to 80 different doctors, getting opinions...
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well, well!  Humph!  You can post post on the area above this site, and ask a real doctor.....sorry to let you down.............maybe 80 doctors will not be enough!
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   This is obviously a patient to patient forum.  You typed about 12 lines with very little real information and get huffy for not being diagnosed and cured in six simple responses.  I gave you MY opinion, get off your duff and go to a doctor.  Until you know where your problem actually lies it is useless to try to solve it.
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21064_tn?1309312333
Given the information you provided, I only felt comfortable giving you a few suggestions.  For example:

Q1)   How easy would it be to get a doctor to get you one?
A1)   I know pacemakers are not something you can ask for, you have to need one for medical reasons.   I don't think you could "convince" your doctor to give you one.  A responsible doctor will insert one IF you need one.

Q2)  Also i had another question.  How does alcohol affect this syncope stuff because I drink often.  Also, it seems like if i lay down and read, i get the lightheadedness more and when I'm moving about, I get the hot flashes... Any ideas?  
A2)  As for whether alcohol plays a role, it would be pretty easy to find out....Try going without and see if you notice a differnce.

Q3)  ...and how much do you pay? does insurance cover any of it.  
A3)  Typically, health insurance will consider payment on pacemakers.  You could consult your insurance carrier to verify coverage for a "medically necessary pacemaker."  

Q4)  And does anybody know if this condition is life threatening or does damage to the heart over time and decrease life expectancy?
A4)  I didn't respond to this question as I do not feel in any way qualified to respond.  This is best answered by your doctor.

In addition, you said, "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... "

From what I have read, the symptoms you describe when associated with neurally mediated syncope are generally treated with behavior modification, medication and/or a pacemaker in some cases.  Have you had a tilt table test?  Has your doctor discussed other treatment options with you in the event the first line treatment does/didn't work?

One word of advice (once a "mom"......always a "mom") - We are here to talk to, share information with, befriend, ask questions, laugh and vent with.  We are not doctors, just a group of folks that share common situations, symptoms, diagnoses, fears, etc.  We do our best to help, but don't have anywhere near all of life's answers.  Before you lash out at people trying to help, consider why we're all here....We all have our reasons, some are looking for answers, some are seeking support, some want to share what they've learned, and others may be just stopping by to make a few new friends.

Hope it's a great day!  Hope your doctor is able to provide the answers you are looking for....feel better soon.


  Have you seen a cardiologist?  What have they ruled out?
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Avatar_n_tn
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.
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Avatar_f_tn
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)
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(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
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743579_tn?1232659126
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
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Avatar_f_tn
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.

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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
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Hello,
Glad to have found this forum. It is great to not be so alone in with this (to me) odd and discouraging syndrome. Does the tilt table test really help? I have aways been active and physical--sports etc--now the simplest tasks seem like a marathon. I have all the above symptoms--presyncope, exhaustion, heat and excersice intolerance, ringing ears, and so on. It is hard to believe that they can do so little for this. Antidepressants make it worse for me. Has anyone tried estrogen? I read that HRT can help? Any thoughts welcome,
Aleif
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Avatar_f_tn
Hi Guys, we all seem to sound the same, I saw six doctors, by the time I got there the symptoms were gone, they all seem to think I was a bit crazy.  Finally by sheer luck I did it in front of my new doctor.  She was great and had me diognosed within 4 weeks.  I have had NMH for 9 years, a late bloomer it started when I was 46. All I heard just as I was passing out after 10 mins on the tilt table was a doctor saying thats a positive, positive for who I ask.  Felt deadful, but was happy to have an answer.    I was give anit depressents and beta blockers 400mg of Cellol.   Took a month to work.
After six months, I told the doctor to stick the anti depressents, the only reason I was probably depressed was the NMH as you can all relate to Im sure.    It is now 9 years on, I have slowly got myself down to 50mg beta blockers.  I will stay on them for about a year and try to go off them and see what happens.

I am slowly feeling better over the years taking down my med levels as I felt better.  I will let you all know if I can go off them completely.

Is there anyone out there who has got better, if so please let me know.


Tricia
New Zealand
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Hi, everyone. I have been suffering with this condition for 32 years. It started when I was 7 and I am now 39. I didn`t get a diagnosis until I was 15. After having various tests I was diagnosed as having epilepsy and put on epilim 500mg. My condition used to come in waves. I would be fine for a year or two with no problems and then I would have 3 episoded in one week. About 5 years ago I was at hospital with my daughter. She was having a preceedure done on her knee. The room was very warm and I was a little stressed. After about 5 mins my symptoms started. I felt hot and light headed, I had ringing in my ears and then my eyes went black and I passed out. A crash team was sent for because I had no pulse. When I came round I felt dreadfull and was tired for about 2 days. I have never been the same since this insodent. I was refered to a cardilogist who sent me for a tilt test. 5 mins in to the test and I passed out. The cardiologist told me I had been misdiagnosed with eplilepsy and said I had Vasvagal Syncope. The cardiologist tried me on fludrocortisone ( a form of steroids). This had no effect at all. All it did was make me gain weight and retain water. My condition was getting worse. I went from occasionally feeling ill and passing out to feeling ill, hot, hot flushes, light headed, tired, headaches, palputations and panic attacts. He tried me on paroxatine ( an antidepresant) and slowly my syptoms (symptoms) become better and easier to cope with. I was on this medication for about 2 years and I was managing fine with just feeling hot and light headed every now and then. Then he took me of my medication because I was feeling well. After about a year my symptoms are back again and as worse as ever. He has just put me back on paroxetine and hopefully the medication will work as well as it did last time. It seems to be taking longer this time for the medication to have an effect. My cardiologist has suggested trying beta blockers if my symptoms dont get any better by the time I go back to see him next month. Has any body had good results with this drug. My palpitations seem to be getting worse and I had a heart monitor fitted for 72 hours. My doctor said the monitor shown up some abnormalities and I need to go for further investigation. Has anyone else had this problem, if so what was the out come.

I look forward to any feed back

Helen (England)
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Avatar_m_tn
Hi, it seems most of the comments and replies to those with NMS are women and have experiences early in their life. Mine is a little different. First, I am a man. And I am now almost 60. Over 3 years ago I began to experience the symptoms everyone else described; light-headedness, passing out, etc. Originally I was diagnosed with an anxiety disorder or panic attacks because I described the episodes to the doctor as feeling an "impending doom." That is what it felt like. I was given anti-depressants but the episodes continued at random and unprovoked. I felt light-headed but the feeling of "impending doom" would pass. However, several months later I was driving when I had an "episode" where I actually passed out and drove off the road. Fortunately it was not a serious accident. But, after seeing him as a result of this event, my doctor dismissed the notion I was having anxiety attacks. I was provided with a Holter monitor for 24 hours and it caught/recorded a 10 and a half second pause when I passed out at home. My heart stopped but I recovered moments later on my own. I was sent to a cardiologist. The heart specialist I saw diagnosed NMS and I was given a pacemaker because my condition was considered "severe" NMS. That was in November of 2008. I have not passed out since but have had a few minor episodes. I haven't passed out. The pacemaker seems to respond to the onset of any symptoms. That is my experience. I have never been given any pharmaceutical considerations except the anti-depressants. I am not sure there are any drugs out there that will prevent the heart from stopping. I maintain a high salt diet to keep my blood pressure relatively high. That is a concern considering my age. But, the alternative might be worse. I maintain the pacemaker is doing its job.
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Hi,
I have also suffered with NMS since 2007. I was diagnosed in 2008 after going to the ER with heart palpitations etc. I had a tilt table test too to confirm. In 2008 when it was most severe I completely cut out caffeine and alcohol from my diet and was on salt tablets. One thing that improved my condition was beginning a regular exercise routine. Also stress management is really important I've found yoga helps. Now it's 4 1/2 yrs since being diagnosed and my condition is a lot better than it was. However I still get severe migraines at least once a fortnight which can be triggered by heat, dehydration, stress or I don't know what. During a migraine i experience nausea, heart palpitations, hot flushes then chills and horrible pain. I am a teacher so if I get a migraine at school it's terrible! I've found the only thing to ease it is to drink heaps of water which is hard when you're feeling nauseated.. And to sit or lie down in a dark room to calm the fast heart rate. Because my condition is considered mild as I haven't fainted for a few years I am not on medication but its so frustrating to deal with and that there's nothing doctors can do. It's good to hear other people's stories on here though coz everyone I try to explain it to as never heard of it! Even most GPs..
Emma
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