Brwneyedchica

I have no experience with this myself, but am very interested in any helpful effects this might have. I've had friend's and family suggest alternative therapies in the past, but I never really looked into it. Keep us posted!

oops it posted twice...

I've thought and thought about it, and I just don't have the same passion for anything as I do for nursing. If I could just get through school, I feel like i'd be able to find a job doing more paperwork than anything. Perhaps a homecare nurse, or even working in a doctors office. I've looked into medical transcription classes offered online, but I'm not sure I want to go that route yet. I don't want to be stuck with some job that I hate waking up to every morning. I'm also going to make an appt with a gastroenterologist. My Mom has one who I remember was very good to her when she was ill. She if he can help me out at all. I definently know I want to do something related to the medical field. My job now is actually pretty good, i've always had really high hopes and high expectations of myself, so it's hard to "settle" with a job less than my "dream job."

I talked to the director of the nursing program today about them being able to accomodate me being ill at all. She seemed rude but I understand that rules are rules. She said that I can't miss, even with a doctors note. And I understand that. But then she went on to say "are you sure this is the right program for you?" If only she understood what i've gone through to get to this point, perhaps she would have had a little more compassion. She just made me feel like I was wasting her time, or looking for some kind of easy way out. I spent most of the day looking into other career options. I can't find anything else i'd rather do. I'm not passionate about anything else. I'm thinking that perhaps i'll follow Paige's suggestion and keep working towards being an RN. My only worry is that the clinicals are 5 semesters long versus 3 for the LPN program. My only hope is that i'll feel well enough to get through it at that time. It's going to take me a long time to get into RN clinicals. I've heard that there is a 3 year waiting list. But I have classes to take that could fill up that time. The reglan doesn't seem to make any difference. I haven't really looked into any alternative therapies yet, but at this point i'm open to anything. My cardiologist is very good, but he's so busy and hard to contact. I thought about trying some herbal teas or something different for the nausea. I don't know, nothing i've ever been prescribed or tried,seems to help. And of course i'm nervous about school and that I will be sick, so when I do actually get sick I get upset and that makes everything worse... I did make an appointment with a psychologist who sees patients with chronic illnesses like CFS, Fibromyalgia and MS though she's never heard of POTS. I spoke with her briefly on the phone and she was very nice. I have an appt for this thursday. I've never been to a doctor like this, so I'm not sure what to expect. I just want to learn how to deal with stress better, how to not feel guilty and like a failure when i'm sick and just how to deal with all of this. Thank you Merrill and Paige for your kind words! I know i'll get through this, I just feel like it's an uphill climb right now.

So today was my first day of nursing clinicals (LPN). I got to school and out of my car and threw up in the parking lot. Everyone was staring at me. And I didn't feel any better so I just went on home. I was nauseated and had diarrhea when I woke up but tried to get through it and go to school. Ever since I was a little girl I wanted to be a nurse like my mom and grandma. It seems as though this dream is coming to an end. At my last visit to the cardiologist he pretty much told me that there is nothing he can do about me being nauseated early in the day. He said to change my schedule and work around it, which i've done for several weeks. But I can't do that now. I scheduled my clinicals for the latest they are offered. It took me 4 years of being on a waiting list to even get into these clinicals. I am really upset and angry and frustrated. I can't accept that I'm going to live at home forever, and not be financially independant. I have a pretty good job now, at the hospital as a unit secretary. But when I was a little girl I didn't say yeah I want to be a secretary when I grow up. I can't accept that this is my life.I don't know what to do, withdraw and keep taking classes toward being an RN? I need a new life plan or something. I will be 21 years old next monday, instead of feeling like my life is just beginning, I feel like it is over.

Wow, how scarey. I have family in Naples, and an aunt who just moved there literally right before the storm was supposed to hit. I'm glad that you are at your mom's with other family members. Take care of yourself and do all of the usual stuff and stay safe. At least Ethan is young enough that you can turn it into a game. Like a big campout. Giving him a flashlight sounds like a good idea. If he's like most little boys that will occupy him for a little while. I'll remember you as well as my family and everyone else in the path of the storm, in my prayers.

At one point I had $30,000 in medical bills, and that was the remainder that insurance did not cover. I was very young at the time and my parent's were able to divide the bills and pay them. I'm not sure if this is any help but when you are admitted into the hospital and you meet certain requirements, you may be eligible for medicaid. I work in a hospital and on my unit the social worker starts the paperwork for that. The patient is rated according to how much savings they have and whatever income they might have. Then as far as I know you pay according to what you can afford. Perhaps you can check into goverment funded programs like that. Than you could help keep the bills from piling up.

Wow. I'm sorry that you are having such problems obtaining your medical records. I understand that there are certain legalities and privacy acts, but you shouldn't have such a problem getting your own records. Definently keep records on paper of this kind of thing. Then if it comes down to you getting a lawyer you have proof. In Ohio there is the Legal Aid Society which offers free legal advice to those who can't afford it. Perhaps there is something like that near you. I guess i'm surprised that these people whom you worked with are treating you so shabbily. Stick it out, I know sometimes everything seems like a fight, but all they and everyone else is doing is making you stronger in the end!

I think the bracelets are a great idea! If you figure anything out let me know. I'd definently like to help out if possible!

Kudos to you! That's great, get the word out. I think that all of these little things that we've all been doing may not seem like alot now. But it helps make you feel like your doing something. And who knows maybe we are all paving the way for people who will be diagnosed with POTS in the future so that they won't have to go through alot of what we have.

My worst POTS related symptom has been nausea. And for a little while I took Ortho tricyclen and that made the nausea much worse. So i've been on ortho evra (the patch) for quite a long time now, and it works great and causes me no side effects. And it's not another pill to add to my collection so that's a plus!

I'm so sorry that your going through all this. I really think that you should stick with it and fight for your SSDI. That money is there for a reason, and we all know that you deserve it. You just have to make the judge see that. I've noticed several other people on this forum who have won, it just seems like a long road. You can do it! There is no shame in letting the government help you, especially when you have a valid illness. Check into the State advocacy group as Blackwolf suggested. As for feeling like you failed... Talk with your husband and your family, i'm sure they understand more than you might think. They are the one's who see you sick on a day to day basis. Good luck, I wish you the best! And of course we are all here to listen to you vent on days like this....

Hi Fritzp, So glad you found this forum. This is a great place to vent, ask questions and learn how others deal. I'll be 21 next month and was diagnosed with POTS in 2000. My blood pressure and heart rate run pretty high at times though normally not while I am in a supine position and not since I started taking Inderal. It's VERY frustrating not to have an actual diagnosis, or people who understand to speak to. I added you to my AIM buddy list, feel free to contact me as well... my screen name is brwneyedgirly01. Feel better soon!!!

The 65 hour bus trip sounds like torture. I've flown several times in the past few years. And i've taken trips where I had to change flights. I agree with what everyone else is saying. Try and relax, the headphones are a good idea, whether you bring music or another thought..... i've found that the television shows or movies they are showing onboard airplanes these days aren't half bad. Maybe you could get involved with that and "forget" about being anxious. And of course stay hydrated. Normal people get dehydrated while that high up in the air!

Runnergirl I did have a blood workup in addition to the 24hr urine. I'm still a little confused about all of this. But prior to my first post I had read a little about pheochromocytoma. One web site listed symptoms including nausea which was interesting to me because i've been nauseated for quite some time now in the mornings and when I eat. I'll mention the plasma FREE metanepherine test when I next speak with my doc. In my mind this is most likely nothing besides some other strange symptom of POTS in my body.But it's always nice to rule another thing out. Thanks for all the info, and i'll keep you posted!

My Cardiologist called and told me that the results of my 24hr urine were indicative of my having extremely high levels of plasma metanephrine. He is supposed to consult with an endocrinologist and get back to me. In the meantime he wants me to repeat the 24hr urine.Is anyone familiar with the correlation of this level and POTS? Is this something usual or out of the norm?

Good luck with the move Jessica! My wish for you is that you have good health (well as good as it gets being "Potsy" and all...) and that you have lots of energy to deal with the move!

Sara, I would definently recommend checking out dynakids. There are alot of younger people on that site. I know how you feel. I was 15 when I first got sick. I'm now 20 and there are still times when people look at me in disbelief when I tell them that i'm sick. Hang in there, it's rough sometimes.

" the wake of the boat does not propel it forward. And indeed we are not defined by the illness of our past. It doesn't matter how long we have been ill, we are right here, right now and the possbililities are limitless." This is SO true... Right on Earthmother!!!

blackwolf, I've always had problems with nausea and keeping food down. That was how I first discovered I was sick. Anyway, I've been symptomatic for the past month or so. When I eat I feel like the food sits there and my stomach just feels really heavy and I feel nauseated. My doctor prescribed a medicine called Reglan, that helps with motility, and is supposed to alleviate the nausea. So far so good, I started taking it on tuesday and have felt nausea free since then. Everybody is different of course, but that is what seems to work for me. Eating soups and crackers always has worked for me. I usually skip an actual breakfast in favor of carnation instant breakfast because solid food doesn't sit well first thing in the morning. At this point, I haven't noticed that any one food makes me feel worse than another. Has anyone else who experiences nausea noticed that it's worse in the morning ?

I've been on an FMLA leave from work for about 6 weeks now. I tried to go back this morning and had diarrhea and was nauseated, sweaty and clammy to the point where i couldn't keep my meds down. I've used up all of my sick time, and i'm perilously close to losing my job. Frustratingly enough, I saw my PCP yesterday and told him that i've been experiencing the nausea (that's always been a predominate symptom for me). He prescribed prevacid and told me and I quote " I'm not sure that the nausea has anything to do with the POTS." I KNOW that it does, but there was no explaining that to him. When I first got sick that was my only symptom, severe nausea. Up until that time I had never had that problem. That's my biggest complaint, I can't drive 45 mintues to work in rush hour and than do my job feeling nauseated. I'm only 20 years old. I'm supposed to start my nursing clinicals in the fall. I can't see living another even 50 years feeling like this. I'd feel like a failure if I quit my job, not to mention that i'd lose everything I own. Those of you who have been in this situation, how did you decide when to throw in the towel and say enough is enough and quit work? My family has always been of the "just deal with it" mindset. I can't "just deal with" feeling like this and trying to function anymore.

I'm so excited for you! It's great that you are able to continue your education. I'm also in school (though I'm taking the summer off) and I will graduate next summer. It's so inspiring to hear about others who have POTS who are working through it and reaching goals! Congrats!

1. Alicia 2. 20 3. Dx: POTS 4. Dx at age 17 5. Elyria, Ohio 6. symptoms at worst: nausea( worst in the morning), diarrhea, dizziness, lightheaded, tachycardia, fatigue, sweatiness, frequent urination, excessive thirst, shortness of breath, chest pain, heat/ cold intolerance, stomach feels heavy after eating small amounts of food, difficulty standing for long periods of time. 7. Symptoms at best: I don't know that I'm sick at all 8. Before my dx of POTS they gave me prilosec and other meds that dealt with my GI upset. 9. I've been on a low dose of Indural for years now and up until this point it seems to have worked. I've had a "flare-up" of symptoms and acquired symptoms i've never had until this point and am still on a medical leave from work. My dose of indural is increased from 30 to 60mg daily starting Friday. Drinking plenty of gatorade and water and eating lots of salt seems to help to an extent.

Alright, so I went ahead and sent letters to both Oprah and Dr.Phil. Worst case scenerio, they don't reply. There's strength in numbers, and something has to give here. Perhaps if we all keep sending letters eventually they will realize that this in fact will make a good show topic. I think I might send letter's to some women's magazine's too. At least if i'm sick and stuck at home, I can do SOMETHING and feel better about the situation.

MM, My thoughts and prayers are definently with your friend. I've visited the NICU at the hospital I work at, and it's really incredible watching these little tiny and sick babies grow and eventually go home. Luckily, doctors these days are well versed in caring for preemies.