lewis

This is interesting as I also have high vitamin B6 and high folate, i haven't been tested for MTHFR and but my homocysteine levels I believe weren't elevated. I eat gluten free and try to stay away from supplemented foods and vitamins. I haven't been retested since I changed my diet. Next time I see my GP I will have him do it.

I can empathize with this. I saw my oncologist of 15 years and discussed my current situation. she said I have had all these tests including a month long holter monitor that showed nothing but normal and was making me feel like I was making it all up and discounting my ttt saying even her heart rate speeds up when she stands up. I came out of the 6 hot appt. with no answers feeling violated by some one I trust my life with. I feel sicker now than when I had cancer and wad on chemo 15 years ago but since my tests are normal they won't believe me.

kitt- thanks for the information,.I would really like to know the biorythym information and will start a new thread so the information won't get lost. also the propranolol actually increased my bp a bit which was good. I had my catecholamines tested and they were normal on the lower end of the scale, however they tested then while I was sitting.

Ya my doctor wanted to try taking the propranolol at night as well to see if it helps. I really think that its also related to not being able to stay hydrated as I have been guzzling a bottle of water when I wake up and I am able to go back to sleep easier.

I got a HR monitor wrist watch. On saturday I had to wake up early and had gone to bed late so I didn't get much sleep. I was so tired at 3:30 in the afternoon I thought I would take a nap, big mistake. I noticed before I fell asleep my resting HR was 61. When I woke up after 15- 20 minutes my HR was 85. I fell horrible for about 5 hours after, kept going completely white faced and almost passing out. Didn't matter how much water I drank as it wasn't helping. I just had to wait it out. I sure would like to know why sleeping screws with my autonomic nerves and why my HR rises when asleep.

please share your results when you get them, I have asked four a sleep study but my doctor won't let me have one

I took my kids to the zoo a few Weeks ago and got too hot and we had to leave early. I wished I had found an air conditioned spot before hand in the park that I could have taken a break in. after half an hour in the air conditioned car driving home I was brought back to a better state

I get this only when I have eaten or taken something to drive it.

There is 2 disease that pop up when I googled MCAD. I assumed you were tlking about mast cell though. I came across this when trying to learn what it is and how to get tested http://mastocytosis.ca/MSC%20Information%20Pamphlet.pdf and joining the forum by email here support@mastocytosis.ca. If you did get a mast cell diagnosis can you share the testing where they found it?

Propanolol helped mine

My stress test showed that everything was normal. I was far from normal though and it wasn't until the tilt table test that I got some answer on what is going on but not what is causing it. If your having siezures I would have gone for the tilt table first, that way you can seize and you wouldn't risk hurting yourself. The tilt table test was the most brutal test making me fell the worst I have ever felt and I have been through some real serious stuff. February is a long ways to wait. If this test doesn't show anything which it sounds like it should then a tilt table test should show something. I hope you get some answers, I hate not having answers and a way to treat it. Tired of just the bandaids for my broken down system.

Also curious if you have had a tilt table test?

They told me my target to stop was 165, however I kept going til 195 cause I was feeling just fine. Just be vocal in the test and tell them you want to keep going or your feeling fine. You could say you are starting to notice symptoms but want to keep going.

Interesting. I have been on Propanolol for almost 2 weeks and so far it hasn't done much for the 4am awaking. I feel lucky if I make it to 4 am. Last night I woke at 1 am and any sleep after that didn't really count.

Also mine was asking the whole time how I was feeling and if I wanted to keep going. I could have said I am done at anytime and laid down on the bed next to the treadmill.

the test is designed to stress you, it will. the tread mill inclines the longer you go and goes faster. I was a runner so I lasted 15 minutes with a hr of 195. you are hooked up the entire time. when I laid down they ultra sounded my heart. I was able to run. if you have a siezure on the tread mill you will probably hurt your self. for me I wouldn't care as long as they could find an answer.

Thanks for posting this!

Thanks for the Bump of this post. My Rhumy said my low C3& C4 was not an indication of any disease but was used to determine if a treatment was working. I was tested a month later and it was still low. She said I had no autoimmune type issues and am not being treated for anything. I will look into the immune side of it though.

I wouldn't give up yet. Was there anything you did current that may have affected you? maybe over simulation from the new job? I can't even think about things that make me nervous or excited cause I will loose it so I can't imagine being put into a new job. see if the next few days you are able to settle in a bit. I quit having as many adrenaline issues with propranolol

I did this, felt worse for a couple Weeks due to die off symptoms they said. I didn't care what I eat as long as it would make me better. told the doctor I would easy dog poop if it would make me better. that diet totally changed what I liked to eat. my comfort food is now fresh vegetables where as before I probably hadn't had any for years. you just need to find things you like with in the diet. braggs dressing on fresh vegetables is great

yup, blood vessels dialating is what causes mine, goes from head to toe

When took it and it felt like it had tightened the vessels in my heart. got some serious chest pains and heart was pounding so hard. I was very glad it only lasts 4 hours. I took it and was sitting all day so I may try it when I am up and about

I have read others having this problem. I have a problem with narrowing pulse pressure only when I am sleeping and it is uncomfortable and makes it so I can't sleep well. I am on proprandolol and it has helped with some of my issues however I still have the narrowing pulse pressure while sleeping. Is there anything that someone has tried to help with this? I sleep with the bed elevated. Thanks-

I found an easy answer for this for my self. I eat ice cream with a hot brownie. Balances it out.

I have definitley been through the ringer as far as testing goes. I have seen 30+ doctors and had over 300 urine and blood tests along with all the body scans. Everything came out normal except for borderline low iron, borderline high co2, low complement c2 (which they said showed nothing) until the tilt table test. then I finally failed something. Is there testing for mito disease?