Neurally Mediated Syncope

[tiredofainting]

I saw a lot of posts on here where other people were discussing their neurally mediated syncope.  

First of all, let me say I am so glad that there are other people out there with this!  I have never met anyone else who was diagnosed and was beginning to think what I had wasn't real.

Secondly, has anyone else had problems with feeling tired all the time?  I have had this since I was young (started passing out in elementary school) and am now 27.  All my life I have been a "sleepyhead," my parents always had a hard time waking me up for school.  Now in my 20s, I am trying to manage graduate school and a small child and I feel like I am the walking dead. I am tired ALL THE TIME.  It doesn't matter how much sleep I get, still exhausted. I try to talk about this with people, but they just laugh it off, saying that as a parent you are always tired.  I understand that, but I am so exhausted that I cannot get out of bed in the morning and have to nap during the day.  Has anyone else had problems with this? What did you do?

Thirdly, I've been on Lexapro and Zoloft to try to manage this and neither seemed to do much. Any suggestions for other ways to manage this illness?

[fedupsam]

yes i am also tired all of the time. along with all my other symtoms. my cardiologist wont put me on meds and told me to deal with it! it make my condition worse as trying to find a cure or something that can help as it is stressful. my episodes happen mainly when im scared or anxious. even thinking about something like an oppointment makes me ill.
i have always had syncope for as long as i can remember but it has got worse over the last 2 years and i can think of no trigger. i do have good and bad days but im sick of feeling like im not really here. i bundle through each day hoping tommorrow will be better and before i know it months have past. it seems, by reading all these posts there is nothing to do but deal with it. what a life eh?!

[ness24]

I know you post your comment over a year ago, but I know what you are going though. I was diagnosed with NMS about 3 yrs ago and since it has just gotten worse and worse. I feel like I am making excuses at times because it doesn't seem like that serious of a problem to a lot of people, including doctors who constantly blow me off when I go to see them and tell that that it's just how my heart is - basically I feel they are saying "get over it".
I have not been to the gym in about 3 months, something that I used to love, because the last several times everything starts to go black. Basically the idea of going to the gym scares me because I fear passing out. So now I am gaining weight, which seems to make my NMS worse, which makes my weight gain worse, just a never ending cycle. Which is VERY depressing. I know what you mean when you say you feel noone believes you or understands what is really going on with you.
I don't know about anyone else, but after passing out or coming close to passing out it takes 1 to 2 to feel like myself again, I just feel so exhausted afterwards.
Anyone that posted before - have you had any progress with your NMS? And suggestions for me and others going through the same thing? Thanks!

[steph4444]

Hi.

I was diagnosed with Neurally Mediated Hypotension about 6 years ago (I am now 25), after years of symptoms. I was put on Toporol xl (sp?) because my job, at the time, required standing in one spot.. which made me pass out. Once I quit that job, I stopped taking the medication and just avoided triggers (standing too long, heat, etc).
My NMH is now so bad that I get sick just from sitting upright, sometimes I feel like I'm going to pass out even while laying down, my heart is always pounding, I'm always lightheaded (sometimes my vision turns white when I'm walking), I'm constantly incredibly fatigued no matter how much I sleep, I have numbness when it gets bad enough, etc.. Basically, I feel awful almost all the time.
The reason I'm here is because I've actually been feeling very depressed lately. No one seems to believe what is going on with me or understand how bad I feel. I get the feeling that everyone close to me is sick of how "lazy" I am and think I'm making excuses, when really I am feeling so terrible. Has anyone else felt this way? I just don't know what to do or how to make anyone understand. I am already so frustrated at feeling this way, but for people to think I'm lazy or making it up just makes me feel so bad. Any suggestions?
Thank you.

[lindanms]

I almost cried when I read your comment.  I was diagnosed with NMS in 2006 and thought I was the only one.  I began fainting when I hit puberty.  I had terrible cramps and fainted all through high school and college.  I had endometriosis that caused terrible pain, which was my worst trigger.  Heat, dehydration, and stress are my only triggers now.  
I do not take any medication.  I control my NMS with behavioral modifications.  I gave up tennis and standing for long periods of time. I do exercise regularly, but I am ALWAYS TIRED.  I asked my cardiologist about the fatigue, and he didn't think it was related.  I do think it is related though.  
I have 2 questions for you.
Do you have panic attacks?
Do you have mitro-valve prolapse?
My cardiologist did say that these things are related to NMS.

[grendslori]

I would probably try and see a rhuematologist to be tested for Fibromyalgia.

[tiredofainting]

They have done a variety of tests on me, blood work, halter monitoring, and a tilt table test. During the test, I passed out quickly and my heart stopped for several seconds, leading them to diagnose me with neurally mediated syncope. The problem is I have been following all of my cardiologist's recommendations, exercise, tensing arms and legs if I feel a spell coming on, eating plenty of salt, and taking the medication he has prescribed me, but I don't feel any better and still have episodes were I feel faint (though I haven't actually passed on in a while). The exhaustion has definitely not gotten any better.  Any ideas?

[grendslori]

I don't know if I would call this an 'illness'. Have you talkeds to your doctor about this? Have you had blood tests to see if there is something going on? Maybe you are anemic? Could you have CFS (chronic fatigue syndrome)? There are so many things that cause tiredness, it would be impossible to tell what is going on, on here.Even the combination of the medicines could be causing this; one drug, maybe not, two drugs combined, perhaps. See your doctor.