Lemons2lemonade

I cannot believe what havoc this stupid disease has taken on my life. And now, i have to pick up the pieces. Its miserable. Since i have had pots, no one in my life has supported me. My family and friends all called me an overzealous hypochondriac. Now, here i am, trying to put this garbage of a life back together on my own, with 1/4 of the energy i had in the first place. To put kindly, i hate this disease times every swear word in the human language. I have to get a job because now that i am feeling better, i know there is no way i am going to qualify for disability, not to mention my claim was denied in the first place. The lawyer i talked to told me to expect this to play out for 3 years. In the mean time, i have student loans that are defaulting, dr's bills to actually get care, etc. that no one is helping me with. I am in debt because of this stupid thing. This disease has made me selfish. I have been a very giving person my entire life, and now with less energy and resources it makes me not want to give anything to anyone. They are not helping me when i need it so badly, so why in gods name should i even consider helping them?! And it is okay for them not to help me, but in doing so, they are more than happy to call me a lazy waste of society for trying to get disability, and also that i am capable of doing more. Please. Some days i wish i could let someone in my body for a minute so they could have one ******* clue what i am going through. This disease is also making me hate people. I am learning that almost everyone in my life is selfish and ignorant. Yesterday, i missed a dentist appointment for the third time. I have tried everything i can to remember stuff, less putting a note for every single thing i have to know hanging in my face when i wake up in the morning. I finally got fed up and went and got a planner. But then, i forget that i have anything going on that day and don't look in it. It is so stupid and it makes me so mad. Remembering an appointment is not that difficult, so why am i completely incapable of doing this? And then, i just sit there and beat myself up about what a piece of irresponsible garbage i am and what crap my life is. And what outlet do i have for this stress?? Nothing. I can't have a cocktail. I can't go for a jog. So it just bends back on itself making more pots symptoms. My dad and brother even told me once that if they were ever in my situation they would probably just kill themselves so that they weren't a useless mooch on society, or keep going even though they were passing out all over the place. I tried to explain that they could go ahead and try to live a normal physical life, but that they simply would not be capable of performing their usual exercises. They scoffed at this. I just wish sometimes i had made some better life decisions before i came down with pots, i think it would have made this whole thing a lot easier, but the grass is always greener on the other side, isn't it?

Pneumonia, bronchitis, smoking, albuterol, and medrol.

I agree, I'm thinking seizure too.

I just graduated college and i think having a roommate is so important. Even more so, because he is ill, he is going to need that support network to help him out. Moving out of your house is really stressful, i would imagine even more so with an illness and it is nice to have someone to go along that journey with. When i was a freshman, i didn't sign up for housing early enough and had to live with an RA who was never there--basically the same as living alone. It was terrible. Not only was it lonely, but it was so hard to meet people. I can only imagine how much more difficult meeting people would be with the whole pots thing going on. At the same time though, i understand that he is going to be more sensitive to his environment than his peers, but honestly, the dorms aren't that crazy where there is a lot of loud music and parties going on. They keep them relatively quiet and most of the parties are off campus. More importantly, it teaches you how to live with someone, which is a valuable life skill. Some other things to consider is what the student body at each school is like. Some schools are more quiet and religious, some are more outgoing. In my school, and other campuses as far as i am aware, they have what are called dry halls. These are dorms for kids who aren't into the drinking and partying scene and may be more advantageous peers for your son since they have a more laid back lifestyle. One other thing to consider, and i understand this because i went through college with pots,is that there is a lot of exposure during this time to drugs and alcohol. Even the best of kids are going to get exposed to this. And these are things that are going to make pots so much worse. I had experience with a few, and none turned out well. So just a word of caution.

omron wrist monitor. Have compared it multiple times to the doc's and its spot on.

Midodrine dropped my pulse into the 30's and it felt like my chest was being crushed every time i took it.

I live in the moment so that I'm not too troubled by other events in the past or future.

I do this too, i really think it helps.

I also try to ignore my pots, sounds goofy, but it prevents me from overreacting and encouraging the whole shebang of symptoms.

i get this, but i found that exposing myself to it, helped it go away eventually:) I think of it as 5,000 conversations going on at the same time and trying to listen to all of them at once.

wow, that's weird. My sodium levels on florinef skyrocketed out of normal range. I hope you figure it out

dani, most of the tests can be done by a normal neurologist that dr. goodman runs. The only specialty test that my insurance company couldn't do was the autonomic reflex screen which includes the sweat test, breathing tests, and ttt if i remember . The blood work, emg, qsart, etc should be able to be done by your normal doc.If your insurance doesn't have a provider that can do an autonomic reflex screen(because they don't have the equipment) then they need to refer you to someone who can. I suspect an appeal will be necessary.

don't know if you are on a beta blocker, but they made my feet super cold!

this happens to me all day every day. When my tachycardia stopped, this started. Its just like when the power flickers but doesn't go out--specifically like the sounds that the fridge makes....beeeeewww downwards-----booooooo upwards!

water and table salt for me, i also take florinef to retain it

i feel like this would help, especially for those with noticeable pooling, i kind of want some!

My tachycardia has gone away with exercise and medication but I still get light headed

Hi mandy, I'm sorry you are not feeling well I have a prescription from my doc for zofram or promethazine when I get sick. It works really well if I take it right when I start to get queezy. If I have more of an upset stomach, I usually try a tums. And then its campbells soup to keep the food going. I hope you feel better soon!

I have hated pesto all of my life. It makes me sick. I just had it tonight and it made me feel terrible. Potsy nauseous and all. So I looked up Pesto's ingredients, and I eat the others all the time with no problems. Except the pine nuts. So I went and looked them up and there apparently is some weird thing with pine nuts where they change your taste, by adding a metallic flavor. They think it is caused by this http://en.m.wikipedia.org/wiki/Enterohepatic_circulation which I think also is important to consider in pots.

Things have been going very well over here. In so much that I feel I am almost back to normal activity. The waves of lightheadedness are still coming, but I have found I am able to push through them. Let's hope this remains to be the case. The fast heart rate has also been at bay. I also rarely feel good and am very tired, but I try not to let this come between me and my progress and activity. Last week I drove every day, went out with friends three days in a row. Went for a 30 minute bike ride around the neighborhood, started about 150 seed pods for my garden and have spent around 8 hours a piece each of the past two days in my garden. Today, I woke up and wrote a cover letter, ran some errands, visited family, met a friend for dinner and then went out for drinks ( I had water). I hope that my story can provide some encouragement for others. You can do this

I agree with you sue! When I was reading that I was thinking, her body is making midodrine! Oddly enough, when I first started having problems and months before the big one, I started to bloat and my potassium was low. Makes me wonder if I was making my own florinef, or increasing my aldosterone levels to try and compensate. Until it got to a point where my body couldn't do it on it's own any more. Cm, its interesting that you say that about the color changes. When I first came down hard with pots that happened to me once, only I was just doing daily activities and everything turned orange for a second. I just blamed it on the ativan, wondering now if it was the pots.

Feeling detatched from my body, reduced temperature sensitivity(hot/cold), increase in contrast of colors in vision, sporadic feelings like when you go over the loop of a roller coaster, throbbing hands at night, felt weird lifting heavy things, got winded a lot easier, started having muscle spasms on my temples, reduced energy levels, had a lot of acid reflux, felt head pressure when bending over in the shower. And right before the big one, became really paranoid that everything was out to get me-- I attribute this to sympathetic issues.

I did

hey alex, do you think its possible that your side effects could be related to the pots and not the drug?

hi, i know what you are going through, i had to do the same with ativan.I withdrew cold turkey from 4 mg a day. It was like i had 15 cups of coffee on top of a panic attack over and over again. I'm pretty sure my heart is still running around the block. Remember, be strong, you can do it. All of those feelings you are having aren't real.They are just anxiety.They are your mind trying to get the drug. Try to stay calm, take a deep breath, take a warm shower, drink some chamomile tea, draw, watch tv, play a video game, call a friend. Try the best you can not to think about it. You have to keep in mind that this week is GOING to be a bad week. But once you pass this week, you are going to start heading out of the woods. Another thing to consider is that you are going to have to go through this eventually, so you don't want to lose your progress this far. I know it is hard, but you can do this, stay strong and take a deep breath.

Yes, it happened to me on the metoplerol, but I read that if it happens on the propanolol to be concerned...according to a website about the drug because it can be a symptom of a bad reaction. Going to have to ask the pharmacist about this when I pick it up.