Aa
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!!
(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
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)
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.
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?
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?
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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