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Old 10-30-2009, 11:39 PM   #1
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Unhappy Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

Hello

I was diagnosed with Neurally Mediated Hypotension about 6 years ago (after having it for many years already). I was put on Toprol XL because I could not work at my job at the time without passing out. I have since quit my job, which involved lots of standing, and stopped taking my medication. I decided that I could use behavioral methods to control the problem (such as not standing too long, avoiding heat, etc).

It seems like my NMH has gotten worse. I do not pass out anymore, because I can always feel it coming on and will sit or lay down. I do, however, have many symptoms and feel awful almost all the time. I constantly feel incredibly fatigued no matter how much sleep I get, I am always lightheaded (have little black outs or white outs while walking), my heart pounds, I have ringing in my ears, feel nauseous, sometimes have feelings of numbness, etc. It has gotten bad enough that I get sick from sitting upright too, not just standing, and sometimes feel like I might pass out even while laying down.

My main question is.. does anyone suffer with NMH and feel like no one believes you or understands how bad it is? I've been feeling depressed because not only do I feel sick constantly, but it seems like no one believes it and they think that I am just lazy or unmotivated, or worse, making it all up. It is very hard to deal with. Does anyone have any suggestions on this? I've been feeling bad about it for years, but even more so lately.

Thank you.

 
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Old 10-31-2009, 01:46 AM   #2
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Re: Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

Quote:
Originally Posted by SuperFatigued View Post
... Does anyone have any suggestions on this? I've been feeling bad about it for years, but even more so lately.

Thank you.
With my own struggles, and triumphs, over blood pressure related health problems, I have found that a big key to stable, healthy blood pressure has been a very healthy, low calorie, small-meal frequent feeding diet. I consume about 1800 calories per day, (1600 calories not counting fiber) in seven meals, or an average of 260 calories per meal (230 minus fiber).

What are your height, weight and waistline measurements? Have you ever been diagnosed as Diabetic, or Pre-Diabetic? Do you know your fasting blood sugar?

How many calories do you consume per meal, or per day? Do you know the balance of proteins, carbs and fats in your diet?

What we feed our bodies places a big role in our health. I am not saying that this is always the answer, but I believe that if we eat healthier, each and every day, we will be healthier.
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⇒ I avoid common ordinary but unhealthy household items
⇒ Balanced, healthy diet
⇒ Exercise
⇒ I alter my Circadian Rhythm
⇒ I LOVE COREG!

 
Old 12-22-2009, 06:15 PM   #3
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Re: Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

I hope you have found some help by now. But if not, you should consider trying acupuncture and herbal therapy to help better understand and resolve some of your medical issues. A good highly qualified acupuncturist - herbalist working together along with your doctors might help provide you with some answers and relief that you seek. You might also consider taking yoga classes as well.

I do not have your condition, but I have walked in your shoes of feeling like no one really understands how bad you feel and you don't know why you feel that way either.... it's very frustrating!! I finally just had to let it go with the attitude of "whatever will be will be" and quit going to different doctors looking for a "diagnosis" or cure.

It's your life and you must take charge in trying to find ways that make you feel better. I ended up using more natural methods with juicing and fasting along with taking supplements and some physical therapy and acupuncture.

Good Luck!!

 
Old 12-06-2010, 06:05 PM   #4
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Re: Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

Hi,
I was recently diagnosed with NMS/NMH the past couple months and know exactly what you're going through. I had to quit my job before I was diagnosed..I worked as a swim instructor which obviously was very difficult for me seeing as it involved exercise, standing, and a very humid environment. All of my close friends seem to "care", but I can tell that they think just what you said, that I'm lazy, unmotivated, and that its not actually as bad as I make it sound. I know I've had this for a while but didn't see a doctor til recently because I always attributed my symptoms to something else like asthma or anemia. I hate it, because I feel like I can't be the fun, energized person I once was because not only am I physically unable to be active but I'm also always tired. ALWAYS. My poor boyfriend is probably sick of me wanting to do nothing but lie in bed and watch movies and I hate that I can't just live a "normal" life anymore. I don't know anyone with this, or anyone who has even heard of it who I can talk to or who can relate to me. I don't have much advice, sorry, because I'm only 19 and since being diagnosed have restricted myself to anything that might bring on a black out. But I do know how you feel, and I'm sorry I wish there was a cure for the whole thing instead of just the symptoms. If anyone has anything of help or interest to add PLEASE do!!
Thank you!

Last edited by hb-mod; 12-07-2010 at 02:37 AM. Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!

 
Old 10-26-2012, 06:27 AM   #5
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Re: Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

I know this is an few years ago. But my daughter is 8 yrs old and lives with this for the last four yrs as we know right now. She has every symptom you listed. She was on Toprol XL too and it got worse and to the point her behavior was not controllable. I stop giving her that and contacted her doctor. But at this point we did not know what we were dealing with until I changed her doctors. Now we travel and that is not good too. When she is in the car to long like 4 yrs she is vomiting none stop. Her new heart doctors told us right an way what was going on with her. And she is on midorine HCL every four hrs three times an day, Fludocrtisone acetate, Zofran, and much more. But if it was not or these three meds she would be in the hospital a lot more. She knew what her body needed and could not deal with before us. But sleeping, OMG she sleeps like 18 hrs an day. She has started to hit this disorder. And she is 8 yrs old. And she is not over weight or eats unhealthy.

Nonetheless, we know how you feel. :angel:

Last edited by hb-mod; 11-10-2012 at 11:33 AM.

 
Old 11-09-2012, 09:38 PM   #6
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Re: Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

I know exactly how you feel. I had a fainting episode about 5 years ago for the first time (I was 14), and I had a double fainting episode 2 years ago. I was standing outside while the groomer was busy with my puppy and I just got this ringing in my ears, I felt sick and everything went into a tunnel, next thing I knew I was on the ground. My first response was obviously to sit up, because I didnt know what happened, the groomer wasnt trained in first aid, so she helped me up, and obviously I fainted again. After the first time I was alright, I spent a few hours in hospital doing tests, they said I was dehydrated but I got on with my life, and I felt fine. After the second time, it completely messed me up.

For the past 2 years, I havent felt normal. I hate going out, just in the fear that I might faint again. Whenever I do go out, I cant stand for too long or sit for too long. If there are a lot of people around, like at shopping centres, I feel my heart racing, I start to sweat, and I panic. Ive tried to calm my self down but I just cant.

First I thought maybe I had asthenophobia (fear of fainting) along with anxiety, then last night I came across NMH, and as I was reading it, I actually started crying tears of joy, as after 2 years of suffering, I might have just found whats wrong with me.

I used to be normal, I used to go out, hang out with friends, do things and live life. For the past 2 years, I have barely left the house. I used to go to TAFE and study nursing, I really enjoyed it. I lasted about 4 months before we moved on to labs and that required standing for a long time, and their aircons never worked so it got quite hot. I had to leave TAFE, now I am in search of a diagnosis. Im going back in February, so I have until then to find a diagnosis and a treatment, so that hopefully I can feel normal again. Its been so long I dont even know what it feels like again.

Last edited by hb-mod; 11-10-2012 at 11:33 AM.

 
Old 12-01-2012, 11:14 AM   #7
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Re: Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

I was diagnosed with Vasovagal syncope,another name for your diagnosis. I have found improvement with 2 mile daily walking,compression garment for lower extremities for two hours before rising from bed,plenty of water including gatorade,and 5-6 very small meals during day. I bought Himalayan salt to sprinkle on food and am eating foods with plenty of potassium like bananas,figs,beet greens. I have my BP at 128/84 and have avoided syncope and heart stoppages for 6 weeks. That's a short time but I may have things under control,I hope.

 
Old 02-22-2013, 08:17 PM   #8
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Re: Coping with Neurally Mediated Hypotension, Neurocardiogenic Syncope

I was diagnosed with NMH when I was 7/8. I am now 23 years old and for whatever reason have never researched the condition before now. Thank you so much for your post (even though it is 4 years old)- I can completely relate to how you're feeling. I like to imagine sometimes what my life would be like if I didn't have NMH- with it, I was unable to play sports, and I often had to sit out during Phys Ed in school, which kids would always make fun of me for. I've actually never fainted from the condition, and honestly, I wish I would because that would give people a visual as to what's going on with me. It's gotten to the point that I'm paranoid/afraid that I'm going to get dizzy when I go out with friends, and this fear ends up stressing me out enough that I end up getting dizzy. I honestly am at a loss as to how to get past the psychological aspect of the condition, so I really do understand where you're coming from.

 
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