GingerA

Thank you guys so much. I appreciate the support of everyone.

I just wanted to say thank you for all the support that you guys have given me over the passed few months as I was with my Dad while he was in the hospital. Sadly, he passed away on Thursday. Somehow I made it through the last few days and the funeral. Today I can not lift my head without the room spinning and I passed out last night for the first time in a while. I know its just the stress but its making a bad situation worse.

I have them now occasionally but several months ago I was having them all the time along with adrenaline surges. Sleep was impossible. I was told it was just a part of the POTS and as I learned to manage the symptoms they would ease up some and that seems to be the case.

LOL I hear ya Bren! I have soooo been there. I was so bad once my boss took me to the ER thinking that I was having a blood sugar problem.

OH YES! This happens to me all of the time. I not only lose things but I forget important things that must be done like bank deposits that must be made or important calls that I have to make. I even forget things that I have told the kids to do like cleaning their rooms or taking out the trash so I had no follow up with discipline on the days that their dad is not here. (He is a police officer in another town so he is gone for days at the time when he is working.) To help me he helped me set up things like hooks for my keys right by the door and habits that help keep up with things that I need everyday like my shoes and the kids bookbags. I also take a notebook with me EVERYWHERE to write down even little things as I think of them.

FATIGUE!!! I think that I could push through if I had more energy.

Rachel, I do get severe pains in my hands and feet that sometimes go up my legs when I get too cold. Its like ice inside my body and yes they do turn white then blue and then burn when they turn red as I warm up. Years ago a doc mentioned Raynaud's but didn't know much about it. Maybe I need to check into it again. What kind of doc would I see? No one here seems to know anything about dysautonomia here.

Rachel, Do you have trouble with cold tempatures too? I have severe pains in cold tempatures but didn't have a diagnosis until this year so all the treatments are new to me. I live in Georgia too but during the winter months when the wind gets bad is when I have the most trouble. I would love to find a way to fight this feeling.

Sue, The doctors are trying. They have run tests to see if there is any mind damage or mental disease. All tests are negative. They have tried medications to give him energy and stablize his moods but nothing is working so far. I just feel helpless.

I guess I just need to vent. My dad is back in the hospital after his heart attack and he has just emotionally given up. He refuses to talk or eat despite the fact that the doctors say the physically he could get better. I went to the hospital and sat with him for three days and now I'm so sick I can't get up. I can't eat anything but popcorn with out getting sick on my stomach. Sitting up makes me dizzy and I hurt so bad that my skin is tender. Still I am guilt ridden because I am not at the hospital with him. On top of that it is my husband's weekend to work (he is a police office in another city) so he will not be home until Sunday night which means I am home with the kids by myself until then. They are bored and don't understand why I can't get up and play with them or cook anything more than sandwiches. Man! I hate this!

I understand your dilemma. I had to leave my job officially in June but the truth is I was constantly out because of the POTS before then and I was a wreak when I was there. I thought about disability myself but thought about what I can do instead. I am going to school online and trying to work online as well. In today's world there are many options that may not have been available in the past. Maybe a career change is something to consider. Think about what you can do and what interests you. You might find something that fits your new life style.

Hey Georgia Peaches! I live in a LITTLE town in Georgia about 1 1/2 from Savannah. There are NO docs here that understand. My GP told me that I was "beyond her expertise." I fought for years with docs here that insisted that I was depressed. Finally after fainting at work continuously and having days that I couldn't even get out of bed, I had a melt down in my cardiologist office when he told me that he didn't know what was wrong with me other than the fact that "life has not been kind to you lately." After I screamed at him for 10 minutes he sent me to Mayo in Jacksonville, FL where it took the docs 5 minutes to say I had textbook POTS (if there can be such a thing). Anyway, now my cardio guys is "learning with me" and is now really supportive I still don't have anyone who knows any more than I do except for you guys on the forum. Atlanta is far for me. (About 4 hours away) but I am open to suggestions too. I'm pretty close to you too Lovesweets. How did you find your doctor?

Thanks for the thread. I needed a place to vent. Today has been really bad because I have been awake for 48 hours with my Dad who left the hospital Wednesday against doctors orders and came to my house because as my sister said "the rest of us have to work." (I wish I could work) Anyway, I finally got him back to the hospital yesterday but he insisted on my spending the night at the hospital with him. By this morning my brain fog was so bad I am not really sure how I got home except that God was doing the driving. I slept this afternoon but now I am so weak and confused that it took me 2 hours to try to feed the boys. Finally my 14 year old called my mom and she got take out. I am so tired that I feel like I can barely type much less sit here but I am too tired to get up and make the walk to the bed. My toes are beginning to get numb so I know that the pain will be here soon. The worst thing is that the family expects me to go back to the hospital (that is 40 minutes away I might add) tomorrow to sit with Dad. I have no idea how I'm going to do it.

I feel your pain. I spent twenty years building my life around a career that I can no longer do. And like you I have doctors that are trying to help but really don't know any more than I do about this condition. I had to look at my life and realize that I am still a person of value and I can take care of myself. I have bad days (to be honest I have had several lately). The information that I get from this site is a huge help. I also am learning tricks that work for me on a day to day basis like keeping a notebook with me to write down things because I have a HUGE problem with brain fog at times. Also I had to learn that if I feel I need to rest then I have to rest or I will crash. From what I am learning about POTS, it is a very person specific condition and you have to be open to suggestions and learn what works for you.

Thanks everyone for your ideas. I will look in to them. He is here now and I am afraid to go to bed because he is so fragile but I know that I need the rest or I'm going to crash. I'm so confused!!

I hate to be a whiner but this has been an TERRIBLE week! I have had adrenaline surges every night so I am not sleeping. Finally I caved and took some Klonopine just so I could get some rest. Now I can't tell if I am dragging because of POTS or from lingering side effects of the medicine. On top of that my dad who had a heart attack a month ago has decided that he is refusing treatment now and is leaving the hospital. Guess where he is coming. MY HOUSE! Which means I have a few hours to get everything ready for his homecoming instead of a few weeks and my brain fog is terrible. I took me an hour just to find everything to make myself an omelet this morning. Don't get me wrong. I love him very much and do not begrudge the fact that he is going to stay with me but I worry that I can't hold up to take care of him. However, I am the only one of my sibling that is not working (I had to leave my job due to POTS) so there is no one to help me. (A fact that they repeatedly throw in my face). I'm just so exhausted.

Thanks for the confidence Corina. Some days I am not sure I will ever get this right!

Wow, this disorder is really teaching me that the little changes make a big difference! I had one of the worst nights last night that I have had in a while. I was up all night on adrenaline and tachy. So today I think I drank an ocean but also got my new compression hose and they work GREAT! I am feeling better tonight but I think I am taking my Klonopin before bed just in case. Everything is different from day to day. I wonder if I will ever get the hang of living this way.

POTS is teaching me to listen to my body not my stubborn ways. Now I have to sit down when I'm tired, eat when I'm hungry, and drink when I'm thirsty. Also this wild ride has brought me closer to God and all of His glory as well as shown me who my true friends are. . . .and the salt is always a bonus!!

Tinks, Everything that I have heard about POTS says that there is no cure. However my doc keeps telling me that I can build up my strength and learn to function as long as I keep everything in balance and not over exert myself. I don't know much about EDS so I can't really help you out there. But I understand about playing with the kids. I watched Father of the Bride the other night and cried because I wanted to play basketball with my kids like Steve Martin did.

Your morning sounds very familiar. I have three boys that need me so I try to push through as well. Be careful not to push yourself too hard however because that is exactly what I did when I was working and my entire system crashed. I finally had to quit work after I past out at work a few times and stayed so tired I couldn't stand up. Now I am battling everyday to regain my strength. I know that I will get there but I can not afford to crash again.

Does anyone else has pain in there arms and legs? I am having a lot of pain in my joints lately which is different from the pain I usually have in the winter. I feel like me knees and hips are coming out of place.

Yes I have this weakness too. This is the symptom that bothers me the most and it seems as if no one understands. Somedays I feel so weak that I can't hold my hands up long enough to wash my hair or stand up in the shower. I try to stay hydrated and that seems to help somedays but not all of the time.

I had migraines with the auras when I was younger but have not had the headaches in a while. However I still have the auras often. Especially when my POTS symptoms are bad. Sometimes I can't see much of anything.

Thanks for the information!