janineerrn

Thank you all for your posts.! I keep myself tanked with water and snack on salted almonds, olives etc.. My biggest problem is fatigue with nausea a close second. I had a big attack last week. It was the first one in a long time, a full blown passed out, sweaty heart racings, vomiting fest that lasted about an hour. I took a long weekend and stayed in bed, after the big attacks I have no choice, my crdio says the atacks are the equivalent of running a marathon. I have no choice but to work. The sad thing is that when I was getting disability and able to stay home, my quality of llife was so much better. I did yoga and I was able to take nausea meds. I cant take them now because they make me too fuzzy headed to work. Im down to 5 pills a day from over 20, which is good. I dont know, I guess I will get through it. I dread the summer heat! Thanks for the support you all, I really needed it.

Danelle, Call me g/f. Im here for you. Im not that far away from you. I just got through with my mothers breast ca. Went through the surgery, radiation, and chemo. I have tons of natural salves and remedies for radiation burn, nausea, and a lot of other things to help keep you more comfortable. Are you goiing to the Breast Center in Asheville? Just call me!

You are not alone. My heat intolerence is 24/7. I have tried everything the others have advised. Some things help make it more tolerable but if I wind up someplace a little too warm I can go into a full blown POTS attack unless I cool off very quickly. I hate it, hate it, hate it!!!!!

Hi All, It has been awhile since I posted. I hope you all are getting along without more difficulty. I was forced to go back to work. My privte disability dumped me and social security was well, just a pain. I was fortunate enough to get a job as a nursing supervisor for a company that helps keep the elderly and disabled at home and out of nursing homes. I enjoy the work and the people I work with understand my illness and are very flexible about letting me do work at home. I was able to save my house from forclosure and keep my car from getting repossessed. Nothing has changed with my POTS. The combo of high dose lexapro, Innopram LA, Klonopin, and Reglan keeps me functional. I also changed a lot in my diet. But the fatigue from working is unreal. I work and come home and sleep. How do those of you who still work handle it? My husband is making me nuts. He thinks because I went back to work that I must feel better and expects me to be my old energetic self. UGH. Im going to read ll the posts now and catch up with whats going on here. Thanks for any advice in advance!

YAY, I am so glad you made it through ok!!!! You give me hope for my tonsilectomy which i am putting off. I hope you feel better soon. I had my gallbladder out years ago and I am so much better off without it. The pain of gallstones is horrid. Take Care Of Yourself Janine

Thank Guys, Ive Missed You ALL!! The Good news is that between the nuclear scan of my entire cardiac system, the echo, and that horrid adenosine stress test my heart and all the vessells are perfect. i have no sign of plaque or CAD. Only a slight mitral valve regurge which is very common. Have a great day all Janine

Hi All, I hope this finds you all as well as u can be. Interesting turn of events. I went for an adenosine stress test as some of you may know, and I had an allergic reaction. Well my tongue turned BLACK!!! I went to docs, was short of breath. It turns out that the adenosine is excreted from your body through your lungs. They scanned my lungs and they were "charred" just like my tongue was. It was touch and go for a while but with my persistance I didnt get intubated ( I actually told my doc if he shoved that tube down my throat against my will I would shove it up his ***) . Im back home and weaning off of oxygen. I got a lot of fluids so I feel pretty good except for the breathing which should go away. Im judging by my tongue, its a light brown now. The apple trees are all in bloom as are the dogwoods and all my spring flowers. I am enjoying them right now. Bored silly. Have a Great Day All Janine

Hi, I take 80 mg the long acting type. Its not a lot. It keeps my tachy down. Couldnt live without it, also it keeps my bp from spiking to stroke zone which happens during a bad attack. I CAN NOT live with out my inderol!!!! It doesnt bottom out my pressure tho and unlike other betablockers it is non specific so more apt to find and control the glitch that causes the bp swings and tachy. Good Luck Janine

Im glad they caught it early. I had cervical cancer when I was 19. Wasnt poty then tho. But Im going through the same thing. My tonils have to come out and it makes me nervous too, but its getting to the point that the chronic infecti0ons make me sick and antibiotics dont work anymore. So cancer is way wose than feeling like total crap for a month. Like with me the benefits outweigh the risks. Just talk to the anesthesiologist...... very important, they are the ones who save your *** in the OR, not the surgeon. And if your anesthsiologist doesnt listen or your dont like him/her ask for another. You have every right too. During the anesthesia interview bring a copy of the POTS info to give him/her and tell them what meds your on and WHY. Youll do fine! Good Luck Janine

Hi Guys, I feel better. I think I am over the adenosine thing. My husband (sweet stupid souls that he is) Did not take me to the hospiltal the night after i had my test (I just found this out) He called my mother; the woman who passed out when bit off the tip of my tongue when I was 3, leaving me to bleed. Anyway. He finally told me he sat up all night watching me because I wasnt breathing good and my body was all seizure like. He said he prayed all night, I told him, Honey, next time pray while dialing 911. Afer a week of total space out, weird freaky dreams and all, I am back on earth. But during my space travel I didnt take my meds right, i didnt drink enough water, I obviously didnt go pee in quite a while cuz I have a uti. I spent yesterday at the new docs and she is great, told her about the adenosine episode. She ordered a stress echo and a ct of my head for today but i blew it off. It was 75 outside, all the apple trees are in bloom and the mountain looks and smells incredible. I groomed my horse and let her out to graze and i layed in the grass. I am not spending a good day at the hospital for 8 hours for 2 tests if im feeling good. Id rather go on days when I can pass out and make people run around. (-: Peace Janine

Hi Ernie, Unfortnately no. i called the cariologist, they said rest and drink a lot of water. Thanks Janine

Everytime I get sick I sing that Bruce Springsteen song.. Im going down down down...... Im not any better from when I had that adensosine. I sleep a lot more (hey it cured my isomnia) I walk like a drunk. My sense of perception is so off. I may have mentioed this in another post but it bothers me. I was stirring a big pot of homemade soup and I couldnt get the soon back into the pot, I made a mess, I couldnt stir. It was like my arm decided to do what it wanted. So Im doing this, trying to stir the soup. (first time since i was 3 that i had to TRY to stir somethin) Well that bothers me... So stuff like this is happening more. I know I didnt have have a stroke. If i tilt my head to the right I fall over that way and if I tilt my head left my body goes left. And it only takes a small movement of my head to lose my balance I go to the doctor tomorow. I also have this whole super way out dream stuff going on but im too tred of typing. Peace All Hope we all have abetter day tomorrow Janine

Hi, I called the cardio who did the test and they said it was a normal reaction after the adenosine. They said rest for a few days. I am feeling a bit better but my brain is still foggy, my balance is very off, I keep running into walls, i am falling a lot. It takes me a long time to type just one sentence. This is driving me nuts. i have a neuro appt next week Hope you are all well Janine

Hi guys, I have beeen way beyond my normal POTSY self. i can hardley fous my eyes, i am off balance and Im falling down a lot. The nausea is horrid, i dont want to eat. i just got up from a 40 hour sleeep, My hubby came an wokw m yo and gave me water, hw said i lookes all scrunched up likw in a siezure and i was snoring which I ususaly dont do It hurts to hold my head up and typing is hard. my speech is horribley slured. Im going back to bed. Hugggs, janine

Thanks for the support guys. I wasn wearing my patch. I had to take it off about 20 hrs into wearing it because I got a rash from the adhesive. Still feel like poop. Janine

Thanks Guys, Im actually feeling worse today, my heart rare keeps droping into the 30's and 40's. This really stinks! I hope they find somethnig useful from this test. Its a rainy day here and I am going to stay snuggled in bed. Have a good day all Janine

Ernie you are a woman of few words but what you say is amazingly sincere. I really hate the fact that you know what "you were made sick" actually is. There are no words for how crappy i feel right now. Peace Janine

Hi Guys, I has the adensosine stress tst this morning. My pressure bottomed out to nothing (passed out) they stopped and waited for me to recover. They started again and my heart rate kept dropping into the upper 20's (I saw SA node block on the strips. God what a horrible feeling that is. As soon as they injected me I couldnt breathe, I threw up, I had to fight to stay concious. NEVER having that test again!!! Now its just wait for the results. I am totally wiped out nd going back to bed. Hope your all well today Janine

I have only been on my event monitor (this time) for less than a week and already have transmitted daily. Every time I transmit they tell me to go to the hospital. I say call my cardio and he calls me back. Looks like Im running about every rythm known to man except for asystole. My adenosine stress test was rescheduled for tomorrow morning. Still I have a bad feeling about that, just know its gonna make me sick. Im scared! My hubby will be out of town but my step dad is taking me. Oh and another thing. My mom gave me a duragesic patch (pain med), I have percocet, vicodin etc... but cant take them, they make me puke. I tried the patch last night and woke up this morning with such relief it was amazing. I wasnt stoned or sleepy or nauseaus. I felt good. I couldnt believe it. No pain today either. I wonder if my doc with rx this for me. Peace All Janine

Feel better fishy..... Looking foward to your posts once you get home and get to feeling better. Peace Janine

I totally understand! You just have to keep going. Tomorrow may be a better day. I get fustrated and angry sometimes when I think ahead so, I try not to. Wish I could give you some advice that would help. Hang in there BIG HUGGGS Janine

My ideal office visit would be to be take right back to the exam room without having to wait and then the doc would come right in..... yea right. Maybe being taken straight back to the exam room, luxurious with aroma therapy and candles and music and dont forget my pool boy, Raoul, to bring me my fresh carrot juice. BTW Raoul is 6' 3' latin, gorgeaous thighs and strong arms , black hair, blue eyes and lives in my imagination. He has been bringing me margaritas for years. Janine

Hi, I live on top of a mountain in western north carolina, 4200 ft. I go down the mountain to go to town, doc, etc.. I do get tachy when I get down the mountain and then again on the drive up. It usually settles in about 15 minutes. Love the mountains!!! Janine

I went to the new GP yesteray and she was great. Today the cardi office called and they got me in with the doc who did a no show. He was great..... hmmmm. His office was appologetic, I was taken seriously and not even questioned about my diagnosis. I had an abnormal ekg. I am back on an event monitor. I get an echo and an adenosine stress test tomorrow morning. eeeeeeeeeeeeeeeeeeeeeeeeeekkkkkkkkkkkkkkkkkkkk. Bad feeling about adenosine injection......... Anyone had one? Im looking it up now. I feel like I have adequate medical care now. Peace Janine

WOW. One step foward........ I found a great doctor !0 steps back........... work up for CFS I am the kind of patient who wants to know everything and i research. I drive the medical community crazy with "why". I dont just accept what they say for Gospil. Heck , I drive myself nuts. So now I am trying to figure out where do I fall in this. Am I the subset group of POTS pts with CFS? Is CFS causing my OI? Hmmmmmmmmmmmmmmmmm UGGHHHHHHHH>>>>>>>>>>>>>>>>>>>>>>> Just when I thought the research was winding down to treatments I havent tried yet, I may get a new diagnosis. I am soooooooooooooooooo tired of diagnostics!!! I really appreciate your knowlegde and experience. Thank you for sharing it!!!! Peace Janine