Jacquie802

Hi Everyone, I'm not sure what this is, but it's def. new symptoms. I awoke this morning with severe chest and stomache pains that spread to my clavicle, along with palpitations, blurry eyesight, nausea, and this is the weirdest part, it felt like there was electricity running through my whole body. I have heard ppl mention this before and never really knew what they are talking about, but I do now. What is this??? I never had this before, so I am just wondering if anyone knows what's going on...? I still feel really nauseas with stomache pains, but the other symptoms have subsided. Any infomation is GREATLY appreciated. Jacquie

Hi Julie, Flourescent lights are waaay too much for me. Walmart is a very very bad store for me. I have noticed that the flourescent lights, crowded stores, and large stores (I won't even go into a Super Walmart, since the regular size/lighting bothers me) bring on alot of symptoms, which last for days. I'm not sure exactly why it bothers me though, i just know enough to avoid them. Sometimes I can be in Kohl's for 10-20 min. cuz the lighting is better, then I just feel weak and faint all of a sudden. Wish I had something that helps to offer, but I don't, just want to let you know your not alone on this one . Jacquie

Hi, as I am laying down watching tv I have notice that I get grey fuzzies. I can see the object I am looking at, but the surrounding stuff is harder to see because my eyesight is getting gray fuzzies. What is this? Last time I went to eye doctor everything came back okay, just said I might have dry eye probs. Jacquie

Hi Lisa, Are you on any new meds that could cause that for a side effect?? Lately I have had alot of weakness in my legs, I almost fall over because I can barely hold myself up sometimes. It's worse in the mornings. I think mine may be to being deconditioned and the fact that I have put on 20 or so pounds doesn't help much. I have looked into getting a recumbent bike which should help strengthen my legs....I hope!!! It's going to most likely take a while since I can't do much exercising, but hopefully it helps! Jacquie

Hi Nina, I have been wondering where you have been lately! I hope you are feeling better by Thursday for your classes. Take care. Jacquie

Is the site down again? I keep getting error messages! Anyone else having this prob? THanks! Jacquie

Hi, I also think that if you can afford it, a dog/cat would be great, but you also have to make sure you can take of him/her as well as any vet bills, which an be costly. I have a cat, Lucy Coco and every time I am sick she comes to lay down next to me. Also, whenever an ambulance came she would sit with me while my uncle (EMT/firefighter) and the rest of the ambulance crew came in before transporting me and then would run to the window as I went off to the hospital. So, I think animals in general are good to have. If you can afford a service animal I say go for it. Jacquie

Hi and thank you everyone for replying to my post. Once I get over this cold I am going to start the Florinef. I am supposed to take .1MG once a day, in the morning. I am also wondering if it has to be discontinued if you get a cold, etc. or not!? Anything else you'd like to add, feel welcome. Thanks again! Jacquie

Linda, I am soo glad that you are home feeling better. Hopefully the infection clears up soon. The dehydration can def. make you feel horrible. Remember to keep up with the fluids! Feel Better! Jacquie

Hi, I developed POTS in August 2003 after some sort of viral infection. The docs aren't sure if I had mono (they did do tests that came back neg, but some continue to think mono caused it). It seems like symptoms began to get worse in 2005. Hopefully, they go away soon, don't know how much longer I can stand it!! Jacquie

Hi, just last night I had severe nausea. It's a little better this morning, but I also wonder what exactly causes it. It sure is a pain to deal with! Jacquie

Hi, I'm not sure what cell phone service you go through. The cell phone company I go through, you can call and ask for them to set up E-911 (enhanced 911 system, it can track where you are through your cell phone). Even if you are unable to talk they can still trace to where you are. Jacquie

Hi, I also would like to welcome you to the forum. I hope your husband gets a diagnoses soon. Not that a person wants to be sick, but it somewhat helps just knowing what exactly is wrong. Good luck! Jacquie

Hi, for a long time I was scared to leave my house. I really wouldn't go anywhere unless someone was with me. I still do get nervous about venturing out by myself, but I bring my cell phone along with me. Do you have one? If not maybe you could look into getting one.

Belinda, Thanks for keeping us updated even though you aren't feeling good. I have been thinking about you lately and I hope you feel better soon. You sure are one tough cookie! Jacquie

Thanks for telling us. Tell dizzygirl we hope she feels better soon. Jacquie

Hi, I get the same exact thing. I have dark maroon legs with little white dots all over them. It goes away once I am out of the shower and elevate my legs. Jacquie

Hi, I just had a few questions... My first question: Does anyone else get SOB after a shower??? Anyone know the cause(s) is/are? My second question: Does it matter what time I take the Florinef? Is it okay to take it in the afternoon? I know the morning is prob the best but I went to bed after I got home this am and I didn't want to take it too late in the day, because I didn't know if it would make my bp too high. Thanks again for all the info given, I really don't know what I would do without you all! Jacquie

Hi, thanks for all the replies. I just woke up and feel crappy. So, if my bp isn't that low this is just POTS stuff? Would the Florinef help that? I feel like I have been drugged or something I can barely stand up straight never mind walk a straight line. Jacquie

After the morning I had today I have decided to take the Florinef. I had to drive my sister to work and on my way to get her my eyesight went very blurry and it was raining so I def. couldn't see a thing. Also, I got really bad Shortness of Breath. My heartrate was okay though, prob becuase the Toprol makes it so my heart rate can't shoot up, I'm sure if I wanst on the Toprol it would have been high. These do sound like low bp symptoms right?! Off to sleep, still cant' see too good. Jacquie

Hi, my doctor and I have decided to give Florinef another try. However, I decided to read on the side effects(not a good idea) and I am terrified to take it. What side effects have people experienced here? I did do a search on it and didn't find too much as in terms of side effects. It took months for me to even take the Toprol I am on. I want to feel better, but not at the expense of having problems due to side effects . Also, does anyone know how long it takes to get the full effect of the Florinef? Jacquie

Hi, that's great you are feeling better! Congrats on getting your new bike! Jacquie

Hi Mary, I'm soo glad that it isn't cancer you have. Although you hate to have anything more wrong, I'm glad you have a diagnoses. As for the waiting it seems like that is all we do, LOL. At your next apptmt is the doc going to go over the treatment plan for you? Keep us updated on how you are doing and how you make out at your next apptmt. Jacquie

Hi, I have never fainted once. I have had near syncope episodes, but have never actually fainted. Like you, I also get surges while my bp remains normal, I'm not sure what causes them, but I'm sure others here experience the same thing. I get the dizziness, etc. and have also had a normal brain MRI. I guess this is just all part of having POTS...aren't we lucky ?! Are you taking any meds?? I am taking Toprol XL which has helped with some symptoms, but has lowered my bp a bit, that's why it's important to keep up with salt and fluids. If you are still feeling aweful I would call and get an appointment with your doc, esp. if these are new symptoms for you. Wish I could have been more of a help. Hope you feel better soon! Jacquie

Hmmm, thanks for the replies. I am going to try the massage for my legs in the am. Is fibro common with POTS? I looked up the symptoms and I do have alot of them, but it's not pain I feel it just feels like I have exercised without warming up my muscles, if that makes any sense. It looks like alot of the POTS symptoms are the same as Fibro, so is there any test to see whether you have Fibro?? The last time I had my bloodwork done (Oct) I think my potassium levels were low, but no one ever mentioned anything about it to me, I saw it on the report. I haven't started taking my Florinef yet, so who knows if the Florinef is going to affect my potassium levels. Jacquie