maryfw

My biggest is the same as yours, I take a HOT bath every morning and night. I have always been so cold natured and it helps me relax.

I drink water and Gatorade all day long so I probably do pretty good there.

I lift things I shouldnt and take stairs sometimes when I shouldnt because I am around other people and I look healthy and hate to go through the Whole explanation so sometimes it is just easier to do what I am not supposed to do.

mary

Hang in there. I was dianosed about 2 months ago and I am 39. My son who is 17 is going to be tested soon. Yes it does hurt to see our children suffer but as you said, God does have a plan and he loves them even more than we do. The good thing is that you know what is wrong with her and can get her help. I know that I have had this since I was 15 but just finally got a diagnosis. My son is very active and sports and I think he will be able to continue.

mary

Just had it happen to me today at lunch. I take my proamitine morning, lunch and 5pm. I was at lunch with a new client and she was talking to me and I was nodding my head. And all of a sudden I felt dizzy, spacey and like I was not there (out of body kind of thing). I had to stop and take my medicine. Luckily she was very understanding but I hate it because all of a sudden go just go stupid.

I was tested for it earlier this year and tested negative. So atleast for me there is no relation between the two.

mary

Mine is definitely worse during that time of the month. More tired, more palpitations and more everything

mary

My eyes do the jerky quick subtle movements. Have for years. Not sure why.

Mary

It is funny the way the slightest changes can affect our bodies. I feel best when my heart rate is in the 60's and my bp is 130 something over 90 something. Today I dont know how high my heart rate got but I could tell it was up and when I sat down and checked it, it was 88. 88 doesn't sound that high but it makes me feel so tired. 60's work best for me. I am on proamitine and it is working well. But I wonder if I also need something for the adrenalin rushes?

mary

Sometimes the people we love deal with it by believing it is not there. Your Dad may be having a hard time coping and the only way he knows how to cope is to think that it is just "something that needs to be pushed through". Give him time to understand.

Just be there to love them both.

Mary

Welcome! I assume from your forum name that you are a ministers wife and I am too. I joined about a month ago when I was diagnosed with NCS and I know I have had it for years too. This is a great positive, supportive and informative place.

Mary

Generally testing the catecholamines during an attack is a good way to get a diagnosis. However, I was determined to have hyperadrenergic pots because my blood pressure spiked during the Tilt and then dropped out. (So I went from 115/75 to 158/90 to 90/ (um I can't get a dystolic!)) Because of that massive spike followed by a 70 point drop, I was told that it was hyperadrenergic pots. If that's what happened during your tilt, I'd say it's probably hyperadrenergic pots (but I'm not a doctor)

Sara

What kind of medication are you on? Just curious. I get adrenaline rushes and i am only on proamitine and I dont think it helps with that.

mary

I have a extremely hard time flying but it is the takeoffs that get me. The change in pressure and rapid change in speed send me into a seizure like episode. Hate it.

I just wanted to say what a pleasure it is to have a place to come and find such positive, supportive people. Before I found out I had NCS, I thought I had Fibromyalgia and probably still do. I have been on a couple of forums for fibromyalgia and you find people fighting ( How horrible). But here I feel such support and I feel so blessed to find people who understand what I am going through and are so willing to share their knowledge with me. Thank you all and stay positive and supportive. Again, I am truly blessed in so many ways in my life and this forum is just one more blessing.

Mary

awesome, i will be on the lookout for that Gatorade!

I checked out the article and the Gatorade product will be called G2. I will be on the lookout too!!!!

I just found out my son, who is all of 25, has precancerous lesions all over his esophagus. It always seems to feel much worse when it's your child doesn't it? He is hyperparathroid too, so I am beginning to suspect a POTS component, however am not sure I want to put him through that stuff in this area....

I will pray for your son as I pray for mine. Nothing gets a Mom ready to fight for whatever it takes, like her children.

Mary

What is the Lyrica for? My husband takes it for neuropothy in his feet.

mary

The thought of having him evaluated for POTS had not crossed my mind but sounds interesting. I will talk with my cardiologist.

The doctor is running tests on all kinds of things, like his kidneys. He has had trouble with his BP for about 6 months now. In March they thought he had a bad infection of some kind that affected his liver count and we chalked the higher bp up to that but that was 6 months ago. Now it runs anywhere from 140/95 to 168/107. The medicine is a low dose.

But I am intrigued by the suggestion to check for POTS. Does that sometimes make your bp go up? It makes mine drop.

Thanks for all the concerns and prayers.

Mary

This is so not fair. My 17 year old who is 6 feet 4 inches tall and weighs 150 pounds and works out 5 times a week has High Blood Pressure. Go figure that one out. My bp is low and no one is my family has high bp unless they were overweight or old.

Mary

blood pooling is hard to explain, but along with the heaviness and purpleness sometimes I feel a burning throb like i just shut my thumb in a door, but its my legs. it's just all around uncomfortable and i find in different postitions it feels differents ways

Madeline

Do your legs feel tight, like they are swelling?

I have heard some of you describe what pooling looks like but what does it feel like? Can you feel it? Does it feel like your legs are swelling?

Go to QVC and try Smart Cups and the item number is a6011. Made for this.

mary

I was diagnsed with NCS about a month ago. I am on proamitine 3 times a day at 5mg. I am adjusting very well. It helps keep my bp up and my heart rate down. But on Sunday afternoon while lying down I noticed that any loud sound was startling me and it felt like a bolt of electricty going through me. I am assuming this is the adrenalyne disfunction. Then when I got up I couldnt walk start. I got nauseated and weak and very faint. Had to go back to bed but what confuses me is that both my heart rate and bp were great. I am assuming this is still a NCS but just more of a symptom of the adrenal disfunction?

What do you think?

Thanks

mary

I was diagnosed within the last month with NCS but first was diagnosed with GERD in January. Now looking back I am certain that it is all related. Last night I looked at least 4 months pregnant myself. Bloating, low bowel motility.

My treatment for NCS is proamitine, 5mg in the am, lunch and 5pm. It is helping alot but the bloating is no better.

mary

Does anyone else have a problem with their heart racing when you raise your head off the pillow in the morning?

Sometimes it feels like an electric shock running through my body.

Thank you all. Does anyone else have trouble with airplane take offs. I liteally shake and do my best not to scream. Once the accelation stops then I am ok. My doctor says hmmmmmmmmmmmmmmmm.

Hi. My name is Mary and I am newly diagnosed with NCS. Maybe I am weird (well that is besides the point) but I am kind of happy that I FINALLY know what is wrong with me. I am 39 and have probably had this all my life. My most prominent symptom is FATIGUE with brain fog. When I am at my worst I can't make clear sentences. I have never completely passed out but have slid down the wall on several occasions. I have always been intolerant of exercise. One of my weirdest symptoms is that I cannot tolerate rapid acceleration in a car and airplane take offs are absolute torchure on me. Never been able to ride any amusement park rides. When I was 4 I rode a tilt-a-whirl with my older sisters and my mom thought I had passed out (almost did).

In my TTT my bp was 64 on the top and they could not hear the bottom number within 60 seconds of standing up but my heart rate of fine. Sometimes though as soon as my head raises up off the pillow (not even my whole body) my heart races (I think people call that tachy).

Any comments you have for me would be GREATLY appreaciated.

I take Proamitine, 5mg in the morning and 2.5 at lunch and 2.5 at 5pm unless I need more. 5mg all day works best for me but I cannot tolerate it. I get nauseas and cant eat.

Thank you

Mary