Ladybug

It's so interesting to me how many people in this forum are somehow involved in the nursing field. I too was going to school to become a nurse (like most of the women in my family, including my mom). I worked so hard in high school to get good grades, and it paid off when I got a full scholarship to my first choice university. I started college having already had POTS for a year- but then in my second semester I started having seizures. Obviously, I wasn't able/allowed to drive. I was/am still living w/ my parents and the school was about 40 minutes away- and was WAY out of the way for my family to take me. I tried for 2 1/2 years to keep going to school, withdrawing each semester because my health would be too bad to attend. Plus, you can't be a nurse if you have seizures- so I HAD to give up. I was SO depressed at first- home all day doing nothing. But now I have a job (my aunt is my boss and she picks me up and drives me to work) at a behavioral health center- there are so many jobs here that a person like you could do AND enjoy. In this time I've found a new passion- I love to cook/bake, and once my health gets under control, I'm going to go to culinary school. Make sure that WHATEVER you do, you pick a career that you LOVE and are PASSIONATE about! Good luck, Lisa

I've only had Reglan in the ER- but it was NOT a good experience. It is now one of the two drugs that I list under my allergies to medications. It had a strange effect and made me go "psychotic." From all the other posts and from my experience, I would say BE CAREFUL!

At the moment I'm unemployed. This is also my first semester not going to college- where I was studying to become a nurse. When I started going to college I already had POTS, but one semester in, I started having seizures. Because I haven't found a cure (and most likely never will), the possibilty of becoming a nurse is pretty much impossible. Most of the women in my family (including my mother) are nurses, but none of them have POTS. Luckily, I've found a new passion, and when my health gets to apoint where I have control, I plan to go to culinary school.

I'm glad your birthday went so well. We all need a day like that every now and then- and lucky for you, it was on your birthday! I hope the days ahead are just as good for you. Lisa

I have full blown seizures- where my whole body shakes and I'm not conscious. Like you, I can't find a trigger. I've also had the full work-up, and all they could conclude was that I had "non-epiliptic" seizures. I've never connected it to anxiety, but its an interesting thought. I take Prozac, and it has been uped, but I still have seizures. Does Zoloft work differently than Prozac in this instance?

Another great doc is Dr. Grubb. I know he is in Toledo, Ohio, but I'm not sure if he is a part of the Cleveland Clinic that the others talked about. I traveled all the way from Arizona to see him. Good Luck!

CALYPSO, I know exactly what you are going through. I know its scary and I really hope you are able to find something to help soon. The chest pain that you are having is pretty much the same feeling I get. Like you, I also had a cardiologist problem. The cardiologist that diagnosed me with POTS quit seeing patients after he got a grant, and I (like you) was sent to a younger, meaner doctor who didn't even know what POTS was. I haven't seen a cardiologist since. I'm no doctor, but I believe the chest pain that I have is a symptom of POTS. The way I found out how to help my chest pain was by accident. During my first two years with POTS I was in the ER sometimes up to three times a week. When they would put the oxygen on me, it helped my chest pain. It doesn't take it completely away, but it makes mine bearable. Even when my pulse-ox level (shown on the monitor w/ heart rate, BP, etc.) was OK, my mom (who's a RN)would ask them to put some oxygen on me. Ofcourse, some stupid nurses/doctors didn't want to put the oxygen on me since my "pulse-ox was fine"- this is one thing about the ER that made me so mad ... the oxygen couldn't hurt me, and if it helped, they should listen! Finally, after the hospital closest to my house told me they could no longer treat me because they thought I was a drug seeker, I had to find a way to manage my problems at home. I went to see my PCP (who is also a pain specialist) to see what to do. At first he gave me morphine, since at that time my major problem was SEVERE headaches. Unfortunatly, I still wound up in the hospital several times because I couldn't keep ANYTHING down (meaning the pain meds can't work) and the pain meds didn't help my chest pain. Eventually, my PCP gave me a Rx for Phenergan suppositories (which I have to use everyday for nausea) and oxygen. As I'm writing this, I have my oxygen on. I have found that it not only helps my chest pain, but also helps some of my other symptoms too. It is definitly something I would talk to your doctor about. You may not want to ask the "stand-in" cardiologist about it, because he sounds like the type to be cynical; ask your regular doc or your PCP. I hope this helps! If you have any questions, feel free to email me anytime. Good luck!

This response is to help Sak, but its great if it helps others too! I'm not sure if what I feel is a panic attack or a warning that I may have a seizure soon- it may be one or the other, or both for that matter. Anyway, I get nervous and jittery . My mom is a RN, so she knows which meds would probably work for me- but we ALWAYS consult my PCP (since we want his opinion and he writes the Rx). When I start to feel extremely jittery, I take an Ativan (the generic is Lorazepam- 0.5mg). It is not something I take daily, just when I feel an an attack coming. What also helps is oxygen. My doctor gave me an Rx, and I now have oxygen at my house. If you don't have access to oxygen (the PURE form!) then try yawning- it gets more oxygen to your brain. Obviously, oxygen alone won't fix it, but for me it really helps.

To all who have responded, I feel like "Thank You" is not enough; but I GREATLY appreciate all of your support. You have no idea how much it has helped. When I saw that I had so many responses (and because of your kind words), I began to cry. I know now that there are people who TRULY understand what I'm going through (because you are too), and more importantly, people who care. Before I had POTS I was the most optimistic person in the world, and I hate that I'm losing that quality (which I hope to gain back soon). However, I still believe that God has a plan for me, that includes being sick, and I will grow from this experience. My hope is that I will be able to help someone, they way you all have helped me. Thank you, Lisa P.S. I have talked to my doctor, who has changed my meds. Unfortunatly, at this time it is more important to control my pain in order to keep me out of the ER (since they told me they could no longer treat me b/c they thought I was a drug seeker- insult to injury).

I just joined yesterday and this is my first "topic"- but it the most important to me. I was diagnosed with POTS in 2000 after I had every test imaginable (spinal tap, CT, MRI, bla, bla, bla) and a neurological resident was telling me there was nothing else they could do (for my headaches), while he was taking my pulse. He knew something was strange, so he sent me to the cardiologist who diagnosed me with POTS. It was my senior year of high school, so I was a "dependent" of my parents. Long story short- tons of medical bills for my FAMILY. I was totally healthy until that point, and I was a straight A student. My senior year was tough (I missed so much school because I was always in the ER), but I still managed to get a full scholarship to the University of Arizona. I had always planned to be a nurse (almost every woman in my family is a nurse or is in nursing school). However, during my second semester at U of A I started having seizures. This meant I couldn't drive, so someone in my FAMILY had to drive me to school (which was 45 minutes away), or anywhere else for that matter. Worst of all, it meant there was no possibility of becoming a nurse. This semester I finally just had to withdraw completely. Since seizures aren't so common in POTS patients, I had to do two one-week stays in the hospital (one here and one at MAYO clinic in Scottsdale) with electrodes glued to my head. Consequently, my mom had to take those two weeks off from work. The worst part- neither test helped to explain anything; meaning LOTS of money for NOTHING! I hate that my FAMILY has to pay for every test/doctor's visit, but its worse when they don't help (which is so common with POTS, since everybody has different symptoms/solutions). My FAMILY is awesome and I have a great relationship with my entire FAMILY. Because we are so close, it makes it even harder for them to see me sick. To be honest, I could take the pain, but the worst part for me is seeing my FAMILY hurt. They could care less about the money they have and will continue to spend to make me better; but I see myself as a huge burden. Do any of you ever feel that way? I feel useless because I can't go to school anymore (meaning I lost my scholarship) and I can't work- meaning I totally depend on my family. Most people who are 21 are out having fun and working toward there future, while I lie on my couch and hope I have enough energy to take a shower. I'm sorry this is so long, but I just had to get that out. I have been really depressed this week, but finding this site yesterday helped lift some of that- because all of you really know what I'm going through- and I REALLY need that right now. I hate telling or letting my FAMILY see how depressed I am, because I don't want to make THEM feel any worse than they already do. I would love to chat or receive any suggestions. I'm at a really low point right now, and I could use ANY help you are willing to give me. Thanks!

I'm 21 and still living at home with my parents. I received a full scholarship to my first choice university, so while I was attending, I was still a dependent. However, I had to drop out this semester because of my POTS. We were wondering what to do and came across a thing called COBRA. I don't know how recently you had to quit work, but it is for situations when you find yourself w/o insurance for a short time because of an emergency/illness. I'm not sure exactly how it all works, but its worth looking into. By the way, can I join your pity party?!? I know how you feel. I was a straight A student in high school and worked hard to get my scholarship- now it was all for nothing. Plus, I can't work or drive (I have seizures), so basically, I live off of my parents (who are totally understanding, but I feel horrible about all of the $ I'm costing them). I understand feeling worthless.

I have "failed" the tilt table test twice. So, like you, I also have a hard time standing in the same position for extended periods of time. I'm 21, so when I take a seat instead of letting someone else have it, I'm probably seen as an unrespectful "young" lady. This mostly happens while waiting to be seated at a restaurant (at the bar or in the waiting area). Luckily, my entire family knows and understands my need to sit; but I do feel judged by others waiting ( i.e. why doesn't she let her mother sit?). I have to remind myself that the only people's opinions I care about are those of my family and friends- the ones urging me to sit! My short explanation of POTS to those who don't know me is that I have a chronic illness. If it requires a little more info, I explain that my autonomic nervous system doesn't function correctly, and some of my symptoms are severe headaches, chest pain, nausea and seizures. Its hardest to explain to doctors in the ER, because to some of them, if they have never heard of it, then it must not exist and I'm making it up. The hospital closest to my house told me they could no longer treat me because they thought I was a drug seeker- talk about adding insult to injury!

This is my first post, but I saw your question about Neurontin and figured it was a good place to start. I was diagnosed with POTS in 2000. I live in Arizona but my doctor sent me to Dr. Grubb in Ohio. He put me on Neurontin at that time because I explained to him that the worst symptom for me was/is headaches. I've seen other posts mention migranes, but my headaches don't fit under that category; I don't have a sensitivity to light or sound. My headaches were/are constant, so I'm not sure that it ever really helped. My PCP here tried to taper me off of the Neurontin, but when I got to a low dose I had SEVERE nausua (NOTHING stayed down!) Since then my dosages have been changed a few times. Currently, I take 600 mg in the morning and 600 mg before bed. I hope this helps. Please feel free to e-mail me (type POTS as the subject, so I don't delete it) if you have any questions.