troythe8th

And not to mention that most of the meds given have little or no affect to the symptoms. At least in my experience.

yes you can refuse to take the ride. If your vitals are fairly normal and you are coherent then its your choice. Good luck and fee; better.

Welcome aboard great to have ya. Hope you get it back under control.

Most definite deterioration here. My son is in fifth grd and has homework every night. I have serious trouble helping and keeping up with him. The memory just isnt there. I know im getting old but im not that darn old. lol Luminosity is great i no longer have a membership but the benifits are great simple and fun. My wife does still have a Pogo games accnt and i play word whomp for hours on end. You get 6 letters and have to make as many words as you can in a set time. It helps divert my mind at the very least and i believe it helps with the fog abit.

Try not to live in fear of tomorrow to the point you cant even enjoy today. I havent had a good day in a long time. I use to have a good week or two at a stretch but things have progressed. A good day for me is when i decide to do nothing and sit on the couch all day. Its not a good day but it isnt worsened by activity that drains me so easily. Take advantage of the good days when you have them and if tomorrow rolls around and you find it hard to get out of bed a function as you did the day before ride the tide of the good you had the day before and reflect on the enjoyment of the things you were able to do. Depression plays such a huge part at least in my illness dont let it control your good days. Good luck and positive thoughts to everyone.

My significant other is very supportive and is my caretaker. I am hardheaded and do as much as i can and she picks up the slack when i fall short on a regular basis. My family is also understanding and supportive as well. It helps that i have a neice non blood related who is also a potsy. she is 17 and has a supportive mother but she doesnt put the effort in herself to better her sitch. I just wish we had more support from Drs in a financial perspective. Its very hard to get better when you really cant afford to see a specialist on a regular basis or get the testing done to more closely dx and better treat the issues.

very sorry for your loss AAP. I to get alot of joy watching the squirrels play and listening to the birds twitter in the yard. We had a grounhog living under the shed for awhile and was a hoot to watch.

I wish. We had taken in a stray momma cat and had a littler of wonderful bundles of joy that just made my day. Unfortunately we are not allowed to have pets so we rehomed them before we were found out. It broke my heart and my days are very empty with them. They truly did help with my anxiety when everyone went off to work and school in the morning.

When your Dr suggest you put salt on your icecream.

Loved this article. The best explanation by far ive seen that explains what is going on inside my messed up body. I disagree that it doesnt explain the neurological aspect. I think it explains it very well. It also makes me realize that i am not getting the proper treatment. My treatment barely treats the symptoms and is only focused on the symptoms not the true cause of the problem. Ive also come to realize i am not going to get the proper treatment without either being rich or being able to get good health coverage. I cant even afford to properly change my diet. These thought are never a good thing when this disorder drains so much out of you as it is day to day is a struggle just to stay positive and hopeful. IMO being dysautonomic is like cancer it just eats away at you. Drains you more everyday till you cant even remember the person you used to be.

I get the waist down tremors as your son does. Early on it was one of my most dominate symptoms. Mine have settled down now and i usually only experience them when i am fatigued or if i get stressed about something. My pots/dysauto manifested first and mainly in my legs. Un controllable shaking weakness and i drug my right leg terribly.

Wish i could remember where i read it but it was some medical text somewhere. It is said feces floats due to a high amount of fat content. Others say it is because of more air or gas trapped in the feces.

Im with Millerla on this one. Heat is hard on me sometimes worse than other times. Its never consistant as to my reaction to the heat. Its hiut me hard enough to make me have heat stroke like reactions at times when i didnt think it was that hot. Other times in extreme heat i have had very little reaction if any. Cold is very hard on me all the time. Ive lost alot of weight and have close to zero body fat. My veins are very close to the surface so i cool quickly. The problem for me is below 60 i need a jacket and cooler than that and i shake like a leaf on a tree especially my legs which weakens and tires me quickly. Winter seems to be the toughest on me. I get very run down and find it hard to do anything. I also have SFN which has alot to do with temp control as well.

I also just respond with the ol Im fine. Mostly im tired of people asking as well as explaining. I never feel well and there just isnt much sense as you say being the debbie downer all the time. I know people have to get as tired of hearing about as i am of telling it. Im sick we all know that and im happy to deal with it quietly in my own way. If i need to express myself about anything i confide in my wife.

As many i have to wear compression stockings and am suppose to wear a ab binder. The socks i can bear but havent found any that are truly comfortable. The ab binder is absolutely unbearable and a pain in the tookus. I stumbled across these in my search for other options and was wondering if anyone here uses them and what they think? It says they are infused with copper hence the name. Does anyone think that would have any adverse effects with POTS or dysautonomia? Here is a link id be curious to know what yall think. http://www.tommiecopper.com/

Good for you Jangle its good to see testimony to actual results from the excercise treatment. I have been sick with pots dysauto for going on 4 yrs. Dxed about 8 months ago. From day one my neuro prescribed vigorous excercise along with salt tabs and lots of water. I am also on 3 seperate meds as well. But like he said the meds are only to alleviate some of the symptoms to allow me to be able to excercise. I was unclear until recently just what he meant by vigorous excercise. I was an avid cyclist before getting sick and even into my early days of the disorder. I was riding up to a couple hundred miles a week on road and trail. To say the least i was in very good condition. I believe this illness deconditions you at an exponetial rate compared to being healthy and stopping excercising. I did good ealry on after dx with my meds and tried to excercise but we all know how hard it is to do that with this illness and i slacked on the excercise part. AS said i also didnt understand what he wanted with vigorous excercise. From my recent visit with him i now understand. I am suppose to excercise for 30 minutes everyday without fail. While doing so i am expected to get my heart rate to 80%of max(max is 220 minus your age) so for me that is about 160bpm. I have to sustain it there for 30 min. So my actual time will be a bit longer. For this helps tremendously becaue i need that carrot in front of me to know what to strive for. I need a goal to work towards and the heart rate is it for me. It is very hard to do fighting through the fatigue. For one most of my fatigue settles in my legs. I have alot of troubles walking and with stability. It is also difficult when your on meds to lower your HR so its kinda an oxymoron type thing. Ive got 4 days in now since my visit. I took a break today because my body said enough is enough. Tomorrow i will hit it again and hope to make it a 5 day stretch. I am doing the recumbent in home if i dont feel like getting outside on my bike. When i do the recumb ill do about 15 min pushing as hard as i can keeping my speed avg to about 20mph. That gets me warmed up but doesnt get the hr up enough so i switch to jumping jacks doing as many as i can taking a short break then jogging in place. I switch back and forth for as close to 30 mins as i can get. I havent seen any result yet other than extreme fatigue and more difficulty getting around. But he stated this isnt a short journey. It could take a few yrs to normalcy and even then it wouldnt be the end of the road. It is a total lifestyle change. Push through the pain then push some more. The three main things that everyone seems to be told to do with dysautonomia................Salt salt salt water water water excercise excercise excercise.

A big congrats to you ana. Its so great to hear a success story. Its one of those little pcs of hope that often keeps me pushing on. I have fought many battles in my life but none as viscous and unrelenting as dyaoutonomia/POTS. All the things you need to fight something like this is exactly what it zaps right out of you. Keep up the hard work and dont let your guard down. I hope for continued progress for you.

Was folding the laundry tonight and noticed not for the first time all the pockets in the jeans and shorts were inside out. But if the clothes are inside out the pockets are not. So now i dont know which aggravates me more stuffing pockets in before i fold or turning clothes right side out. Feel free to add some of your lifes mysteries and befuddlements

You know you have pots when you walk 3 times as far to get to the same place as the one your walking with. I tell my freinds walking is easy for you but its funner the way i do it. They probably think its funnier the way i do it. Great post thanks for the laughs.

I love to read i cannot read as long as i use to but do so in short spurts. Earths Children series by Jean M Auel is awesome. Anything by Stephen King Getting ready to start the Hunger Games series.

This is also one of my most worriesome symptoms as well. Its not that i forget how to breath but more that its no longer an autonomic function but more voluntary. I rarely have a shallow normal breaath its always deep struggling breaths.

I use to have no movement issues. Loved to swing and ride carnival rides. Not anymore. Just sitting in a rocking chair makes me dizzy and nausous. I cant even consider swinging with my children. I would love to have a good swing.