neurally mediated syncope :(

[andrewSyncope:(]

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!!

[DIYEMMA1471]

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 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)

[Jaguar10]

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

[aleif]

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

[andrewSyncope:(]

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

[PJamela]

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.

[Jess0711]

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