Meghan

Hey Sarah, I am 19 and I have POTS. I was diagnosed in December 2003, but I think I have had it for well over a year now. I would love to talk sometime; my AIM is Meg6327. Also, I am a member of DYNA, and I've found that it's an awesome way to meet people who are going through the same thing I am. A lot of the kids in it are around your age, so I am sure you could find tons of peope to talk to! Hope to hear from you soon! Best Wishes! ~Meghan

Sue, Congrats on cutting your hair! I grew mine out really long a few years ago and cut it off for Locks of Love (they make wigs for kids with cancer). I also found that short hair was much easier to deal with! If you still have that 12-14 inch pony tail and want a worthy cause to donate it to, you should consider Locks of Love- it's a great organization! Hope all is well! ~ Meghan

Although Provigil was helping me a lot with fatigue, I recently stopping taking it because I found it made me really sick to my stomach. I am taking a lot of other meds too, so at first I thought it could be something else, but I always noticed that I got a really bad stomachache about 20-30 minutes after taking the Provigil. Has anyone else had this side effect? It's too bad that this happened, because it was really helping me feel more energized! ~ Meghan

Lorrell, I'm almost sure that I am the 19 year old education major that you met at the Summer Chill. I think that you and your husband were sitting at a table with my mom who introduced us. I'm sorry that I didn't make the connection that you were from Dinet! I'm glad that you were able to come to the lecture. Although DYNA is primarily kids, it's neat to see adults getting involved as well! Hope all is well! ~ Meghan

Jessica, All the suggestions so far are good! I have one more that no one has brought up. When I mentioned to my POTS doctor that I wanted my sleep to be more restoritive, he suggested that I put lavender essential oil on the four corners of my pillow. I actually use a lavender/vanilla scented pillow mist from Bath and Body Works, which is easier than putting the oil right on my pillow. I don't know if it actally makes my sleep more restoritive, but it seems to help me fall asleep quicker. The scent of lavender is supposted to be relaxing and aid in sleep, so it's something you might want to try! ~Meghan

Gwem, I am 18 and have POTS. I have been diagnosed for about four months now, but I experienced POTS sympotoms for about a year before I was diagnosed. I was really sick in the beginning of the school year and saw all kinds of doctors before I was finally diagnosed. Since I have been treated for my POTS with a high fluid, high salt diet and with Proamatine, salt tablets, and Provigil I have been feeling so much better. I don't have as much energy as I did before I was sick, but I am definitely on a functioning level. I have been able to say in college through all this, and I am just about to finish up my freshman year. I definitely can understand how hard it is to go to school and deal with dysautonomia, and I totally understand why you decided to come home. I would check out DYNA (there is a link in an above post). It's a great group of kids who can offer a lot of support. I am a part of it, and although I am one of the older kids, there are some that are in college and around our age. If you ever want to talk or need to vent or whatever, please feel free to e-mail me. I hope that all is well... ~Meghan

I got the vaccine this past fall, before I started college. I did not have any adverse reactions to it (except that my arm was a little sore, but that's to be expected). I do live in the dorms at college, but even if you don't you are still in contact with a lot of people on a regular basis, which puts you at risk for being exposed to menningitis. I would read up on it and talk to your doctor (as others have said) to help you decide whether or not to get this vaccine.

I agree with all this. Provigil is an anti-narolepsy drug, but it can help with fatigue and daytime tiredness also, which is what I take it for. I take it in the morning, and do not find that I have trouble sleeping at night. Also, if I want to take a nap during the day I don't have trouble falling asleep then either. However, the Provigil has made me feel so much more awake during the day that sometimes I don't have to nap, which is great. Has anyone had any negative experiences with this drug? My own experience and the posts so far seem to be positive, but I would like to hear other opinions too.

I was put on Provigil recently by my doctor to help with fatigue, which has been one of my most debilitating symptoms. I have been taking it for about five days now and I feel great; I have much more energy during the day and I don't need to nap as much. This drug, coupled with Proamatine, salt tablets, and tons of fluids, seems to be helping immensely. I would love to hear what others have to say about this drug and hear what your experiences with it have been. Thanks. Hope you all are feeling well! Best Wishes! ~Meghan

Aprilmarie, I have noticed a correlation between allergies and my POTS symptoms as well. I have had bad allergies pretty much all my life, and I am treating them now with perscription drugs and allergy shots. I find that when my allergies are under control, my POTS symptoms are better. If you are not already being treated for allergies, I would encourage you to see a allergist. I think that getting your allergy symptoms treated could definitely help eleviate some of the symptoms you are experiencing right now. Hope you start feeling better! Best Wishes! ~Meghan

I recieved this beautiful quote in an e-mail and wanted to pass it along to all of you since it greatly encouraged me. It reminded me that although we may be suffering with long term illnesses, there are special virtues which emerge as a result of our suffering. I hope that every one is feeling well! Best Wishes! ~Meghan "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen." -~Elisabeth Kubler-Ross

Tearose, I am glad to hear that you are feeling a little better. Sinus infections are so painful!I hope that the antibiotics will clear it up. I know that with POTS it's hard to do even the simple everyday tasks that others can do without much effort. It seems like you have a good attitude about it though, which is good. Keep hanging in there- I hope that you continue to feel better! Best Wishes, Meghan

Thanks to everyone for all of your thoughtful responses and words of encouragement. It is so encouraging to hear stories of those who have gone through similar situations as me. Tearose, I really appreciated your insightful comment that "changing [your] expectations was not the same as lowering them." I am having to learn this too as I see the many ways in which POTS affects my life. As I am in college, my expectation was that I would finish college in four years, get my degree, and start working. However I am having to learn that I may need to take less credits each semester, even if it means that it will take me more than four years to finish college. I am a really determined person, and I often push myself to do as much as I can; yet I am trying to learn that in accepting my limitations because of POTS, I am not necessarily lowering my expectations. Michelle, thanks also for your comment as to how your "course" has changed. I am learning to accept that as well. Also, I am keeping in mind what you said about the high probibility that POTS will improve with treatment over time. I am thankful that I have been diagnosed and am being treated in order that my symptoms can improve. Thanks once again to all of you for your encouragement- I really appreciate it. I hope that everyone is feeling well! Best Wishes, Meghan

Genie, Thanks so much for the response. Like you said, I have already had to find support from friends and family. I am blessed to have incredibly supportive parents and grandparents who live by me at college and call and check up on me often. I have also been blessed with a wonderful roommate who cares about my health, is interested to understand what POTS is about, reminds me to take my meds, and totally accomadates my need for a lot of sleep. Sadly though, for the most part my other friends at school don't really understand POTS, nor do they offer much support. Thanks so much for the encouragement- it's great to hear that you were able to complete school successfully with POTs. Congrats on finishing your masters! ~ Meghan

Hi, I was recently diagnosed with POTS (in December) after having symptoms of syncope, near fainting, fatigue, tachycardia, ect. for about ten months. I am a freshman in college, just starting my second semester, and I find it really difficult to live with POTS while attending school. I have to nap a lot, go to bed early, ect. while all of my friends are staying up late and going out. I am now taking Proamatine and I find that my energy levels have increased a little bit, and I am able to do more during the day. However, the POTS still significantly affects my life. I came across this site while researching POTS online. It seems like a wonderful, supportive community. I was wondering if anyone is/has been in a similar situation like this who could offer any support, encouragement, or advice. I am trying to remain postive and live my life as normally as possible, but I would really appreciate any suggestions or advice you might have for me regarding living with POTS. Thanks ~ Meghan