lewis

I have had a fitbit hr for a few weeks and am really curious how my heart rate chart compared to that of a normal person.

Glad they found some answer for you. I never had the vomiting and was told by the vascular surgeon and the gi surgeon that this surgery would not help me. The vascular surgeon said he wouldn't do surgery on it. I met with the gi surgeon 4 times before I finally convinced him to do it. He said that the surgery wouldn't help my condition but he would do it solely to help the aneurysm of the celiac artery. Well a week after the surgery and I had no more gastritis, first time in 7 years and I could eat without the occasional pain. My surgeon on the follow up still said he was skeptical that it helped me because on paper it didn't make sense( since there are 3 or 4? other arteries that feed the stomach). My dysautonomia didn't like the surgery and it put me in a tail spin for a bit but am definitely better off and stronger than if I hadn't had the surgery. I have no regrets for getting the surgery done, except for moving 4 yards of bark the day after surgery not knowing the pain taking me to my knees was due to them cutting my diaphragm. Any questions you have let me know.

For me it just manages the symptoms and helps but really it still ***** but could be worse.

I can't remember if I had taken them ten seconds after I just took them and usually take then again. I got a routine now that has been mostly successful. I take my water bottle out of the fridge for night needs and put it back in after morning meds.

Interesting Metoprolol did nothing for me but propranolol helped. Regardless of what I am taking, if my nervous system is affected by something it will thrown out of whack. I can't handle any stress. Also I don't know if it helps but I have found some things that make everything out of whack. They may not be the same for you but maybe it will help so I thought I'd share. Any gluten and any chemically made vitamins specially b vitamins and folic acid. Also occasionally msg. I can't take any multi vitamins and don't take supplements, just do better without them. Waves is a good way to put it, I always seem to go up and down for almost no known reason. It's fun to manage isn't it?

I don't know if it helps but I have found some things that make me tachy. They may not be the same for your daughter but maybe it will help so I thought I'd share. Any gluten and any chemically made vitamins specially b vitamins and folic acid. Also occasionally msg. I can't take any multi vitamins and don't take supplements, just do better without them. The max hr for my age is 180 so I try not to go past that when I excersize. I've read it's 220 minus your age.

According to this article I just came across stimulants increase blood flow by tightening the blood vessels which I think would increase blood flow to the brain. http://www.cortjohnson.org/treating-chronic-fatigue-syndrome-mecfs/enhancing-blood-volume-in-chronic-fatigue-syndrome-mecfs-and-fibromyalgia/

Sounds like it. Have you had a tilt table test? I would ask a cardiologist for one if you don't have a neurologist in your area that doesn't specialize in dysautonomia. I got on propranolol and that has helped some with the palps and skipped beats. Also excersizing while taking salt pills and lots of water helped me from the advice of my doctor

I get weird pains and things going on any time I do any type of chest excersize that last for days do I avoid them.

Propranolol actually raised my blood pressure, just stabilized everything. I thought it felt like they put a muffler on my heart. I'll have to say that the affects of it were better when I first took it but if I miss a dose I can sure tell really quick. Glad it is helping you!

I've been on two antibiotics since dysautonomia showed up. One was amoxicillin and it made me worse.The other was a zirhromax and that's when all my heart issues began to show up.

My eyes are more sensitive to light changes and take longer to adjust to brightness. Both my hearing and eyesight are really sensitive to change.

My palpitations come and go without rhyme or reason that I have found. I usually get some at the same time everyday. I take a pepcid as that helps with heart burn I get but I usually can't tell if what I am feeling is chest pain or heart burn. I try really hard not to get up in the night as I get these same feelings and when I lay back down my heart is flip flopping all over the place for a bit.

It's weird how I can forget how bad I once felt until I am reminded by stories like yours. I know all to well what you are going through. It took me months to be able to smile again and at the beginning of this I also had weird head pressures but not as severe as yours. I am not sure if what I did will help you but I will tell you what I did. I quit eating gluten and anything fortified. If you have the MTHFR gene you might not be able to process the chemically made folic acid that is put in alot of things. My folic acid levels were high so I quit eating them. I mostly eat all natural things. In the beginning I was constantly getting Candida overgrowth on my tongue but that's gotten under control. I also stayed going to the gym and that has helped. I take 10mg propranolol twice a day. Have tried anti depressants and they made done things better but other symptoms worse. I just got a script rust for buspar to try. My iron and copper levels were also low so I eat lots of red meat and the days I don't the nerve pain comes back. I am still searching for better answers but do get some good days. I hope you can find your way back to some good days.

I lay on my right side so I can not feel my heart pounding against my mattress and use a huge body pillow that goes between my knees and arms,somehow it helps my hips and pooling blood and keeps my arms at the right height and it is good for snuggling too.... Thanks, I'll try it.

Thanks!

I hate the heart felt flutter. My wife gets upset cause I'm moving around to much trying to find that quiet spot inside. I also use water to calm things down. I've noticed that for me that consecutive days of weight lifting and lots of iron get rid of that nightly burning awakening and calms the most heard in my chest. Unfortunately I only get a chance maybe twice a week to lift weights. I would also like to hear if there is anymore ways to help this.

My holter monitor test showed a few instances of svt. Everytime I had the svt I was dehydrated and walking. I think for me it was due to my blood vessels not constricting and my heart trying you compensate for the low blood pressure which is directly related to the dysautonomia. I think there may be different forms of svt or that my holter monitor was showing results that looked like svt but wasn't actually an svt.

Any ist and svt I had was brought on with the pots. I've found I can manage it by the things that affect me and eliminate these things. I don't eat gluten (if I do it shoots straight up) lifting weights, no chemically made vitamins, staying hydrated, eating red meat everyday, are the biggest things. My resting heart rate right now is 55bpm and that's right where I like it.

I get similar with my eyes everytime I go for a hike. My vision pulses when I'm done.

I was going to start a new post on this very subject! I hate Christmas now! My kids think I'm just the grinch and keep telling my wife I need to find the Christmas spirit. They just don't understand, no one does unless they are going through it. I crave for days that are blah. I don't want stress and I don't want excitement. Arg!! 2 more days and I can finally relax. I think this will be the last Christmas I celebrate, its just to hard on me.

I wake up and never know what I'm going to get and I'm wondering if this is the same for everyone. For instance I've broken it down into percentages. 90% chance of orthostatic intolerance, 90% chance of nerve pain, 25% chance my brain won't work, 25% chance my bladder won't be able to empty, 25% chance my stomach will be gurgling all day, 25% chance my vision will be blurry, 75% chance I'll have a sleep disturbance, 50% chance I'll have pvc's our palpatations all day, 50% I'll feel like I'm on the verge of a nervous break down and on and on.....

I really want to be able to get some excersize on the days I work but I can't because I am to tired so I work my butt off on days that I'm off and it's hard because I have other things that need done on those days.

I've been able to work myself up to lifting the the weights I did before I got sick as far as weight lifting. I can't do the cardio type excersize the same but it's nice to be able to feel that I am strong like I used to be. I take a salt pill before and drink a liter of water and I drink a cup of water after each repetition. That's alot of water but my head feels no different after I work out.

Welcome to the club. I have been through 2 years of testing all with no answer. Everything except my first ttt was normal. My ttt with my dysautonomia neurologist was normal. Weird. There isn't a test I've that I haven't had. Just try and find what helps you. I have a long list of what I found affects me. I have some good days now. I just take it day to day. I stay away from gluten, any chemically made vitamins, anything fortified, lift weights at the gym and take propranolol. I am no where near where I use to be but my quality of life is better than when I was at my worst. It's a challenge to figure it all out that's for sure