Meghan

Chrissy, I'm glad to hear that you have the dorm situation worked out. I am going to be a junior in college (I'm studying Education too!), and lived in the dorms the past two years. They were always SO hot... especially since I lived on the third floor! The AC in your room will be a big help, I'm sure. If other people on your floor don't have AC they will probably all want to hang out in your cold room instead of their hot rooms-- a good way to make friends, right? Just kidding... Anyway, you are lucky to have people at your school who are working to make sure you have the accomidations you need. I hope that you have a great year! Love, Meghan

Dizzygirl, My heart goes out to you. I have, many times, felt discouraged about my health, especially when I don't feel supported by those around me. In my family, my mom seems to be the only one who really understands or advocates for me when it comes to my POTS. My one brother and dad seem to think that if I was just tougher I could get over it. I've realized that no matter what I say, I can't really convince them. I just have to try and ignore their rude comments and unwillingness to try and understand what's going on. As far as your boyfriend, I hope that he comes to see that what you have is actually a serious medical condition... and I hope that he will become more understanding. Know that you can always come here for support. We're all here for you when you need us. Best wishes to you-- Meghan

KRKTS, I'm sorry to hear that you are experiencing bad fatigue. It's one of my worst symptoms, and I know how hard it can be! I take Provigil to try to combat fatigue, and it has helped me a lot. There have been a lot of threads on Provigil here, so I would suggest you do a search and read some of those. Like you, I am able to sleep when I have taken my Provigil. Although I am still able to sleep when I've taken it, I definitely think I have more energy with it than I would without having taken it. I still need a one to two hour nap each day, but that's better than when I wasn't taking the Provigil and would sleep three to four hours each day. Are you feeling MORE tired on the Provigil? If so, that's definitely something to talk to your doctor about. Hope that you can figure this all out... Best Wishes, Meghan

I have no experience with the allergy drug Xolair (although I have taken almost every thing else-- Claritin, Claritin D, Clarinex, Zyertek, Allegra D, Allegra 180, etc.). I do, however, take allergy shots. I have been doing them for about three years now. I started before I was diagnosed with POTS and have continued to take them. I haven't really noticed any effect on my POTS symptoms from the allergy shots. I would talk to your doctor about taking the allergy shots though if you are concerned that it might make your symptoms worse. ~ Meghan

Persephone, Actually Midodrine is the generic and ProAmatine is the brand name. Just wanted to clarify... ~ Meghan

I got this vaccine before I started college two years ago. I had no adverse reactions to it. Although I was undiagnosed at the time, I was experiencing POTS symptoms and I'm pretty sure I had POTS then (although doctors hadn't figured that out yet). It didn't make me more symptomatic or anything. They recommend this vaccination for those who will be going into college and living in close proximity with others in the dorms. I definitely think it's something to talk with your doctor about to see if it would be right for Chrissy. Best Wishes, Meghan

I have this symptom as well, but thought that it might be because of my allergies. I wonder if there is some connection with POTS... does anyone know? ~ Meghan

I am able to drive short distances, but I don't drive on the highway nor do I drive for more than 45 mins or so. After an hour of driving, I am not feeling well at all! I am thankful however that I am still able to drive some and get myself most places. Being able to drive totally depends on each person, the nature of their condition, and how they are feeling on any given day. I know that somedays I shouldn't drive because I am not feeling well, so I don't. Hope that everyone is feeling ok. Meghan

I am on Provigil. I take 100 grams with my morning meds, 100 grams at noon, and then sometimes take one later in the day (around 4) if I need to. I just talked to my POTS doctor and he is going to start having me take 100 mgs in the morning and 200 at noon to see if that helps increase my energy. There was a thread about this not too long ago... I am going to see if I can do a search and find it for you. Hope everyone is feeling okay! Love, Meghan Edited to add some links. These are previous threads about Provigil: http://dinet.ipbhost.com/index.php?showtop...039&hl=provigil http://dinet.ipbhost.com/index.php?showtop...958&hl=provigil http://dinet.ipbhost.com/index.php?showtopic=449&hl=provigil

One of my jobs last summer when I came home from college was being a greeter a furniture store (it's similar to a Wal-mart or Costco greeter). It was not a good job at all for someone with POTS... I had to stand up for long periods of time. Luckily, I was able to work it out where I had a chair, and if I wasn't greeting I could sit down. It turned out ok, but like every day I feared that I would just pass out and someone would walk in and see me there on the floor, haha! Luckily it never happened though! This is a funny topic! Keep posting ideas... Hope that everyone is feeling ok. ~Meghan

I am interested in what you had to say about Folic Acid, Vitamin B-6, and B-12. I looked them up, and it looks like they all help to maintain a healthy nervous system. I take a multi-vitamin daily and the label says that it has Folic Acid (400 mcg) in it, Vitamin B-6 (2 mg) and Vitamin B-12 (6mcg). I wonder if that is enough or if I could be taking more to help with brain fog and fatigue (fatigue is one of my worst symptoms, and I would like to take something else to help with it). BuddyLeesWife, how much did your husband take of each when he took the Folic Acid and Vitamins B-6 and 12 while you were waiting to get the Celefolin? I am seeing my POTS doctor next week, and I will have to ask him about these vitamins. Hope that you all are doing well... ~Meghan

I take Provigil. The first time I took it I was taking 50 mgs with my morning meds. I felt very nauseous from it (after the very first dose), and I didn't feel a very big difference in my faitgue levels. I was on it for about a month and a half, then stopped. I hadn't thought that it was making a significant influence on my fatigue levels, but when I stopped taking it I realized that I was much more tired all the time. I talked to my POTS specialist about going on another med to help with fatigue since the Provigil had been giving me a stomachache. But he put me back on the Provigil and instructed me to always take it on a full stomach (since I have been doing this, I haven't really had probelems with nausea). When I went back on it, he put me on 100mgs. It was working well for a few hours in the morning, but then I was feeling tired in the afternoon, so he has me taking another 100 mg dose around 12 noon. I would say that it took about a week or a week and a half for me to notice the full effect of the Provigil. So if your daughter has been on it for awhile and isn't seeing any results, I would call her doctor and talk to him/her about it. Hope that she is feeling better soon! Love, Meghan

I see Dr. Davis as my specialist for POTS, but he is in Chicago. Is that who you are thinking of? ~ Meghan

Morgan, I just wanted to let you know that there is a 100 mg pill. So maybe if you wanted a smaller dose you could split the 100 mg pill in forths, making each dose only 25 mgs. Just a thought... Hope you are feeling better soon! ~ Meghan

Morgan, I take Provigil, and I had some side effects when I first started taking it. I was very naseous and although I didn't ever throw up, I felt like I was going to. I have never gotten a headache with the Provigil, but I imagine that could be a side effect as well. What has worked for me is eating something substantial before I take it. I take 100 mgs in the morning, so I get up and eat breakfast, then wait about a half an hour, then take the Provigil. Having eaten something really helps, otherwise I feel very sick to my stomach. I take another dose (100 mgs) around noon, and always make sure I take it after I have eaten lunch. I would urge you to talk to your doctor if these bad side effects continue to be bothersome. I hope that you can figure out this drug, and I hope that you are feeling better soon! ~Meghan

Last year, right before I was diagnosed, I couldn't work out at all. But recently, with my doctors permission, I have started exercising every day. I go at night (I tend to feel better at night too) and run on the elliptical for a half hour. I go at a moderate pace, and keep my water close at hand! I have been doing well with this. Although I am exhausted afterwards, I feel like I am doing something good for my body. I want to keep as conditioned as possible, as I have heard that it helps people with POTS. When I was going through a hard time with my POTS I did Pilates. It wasn't too strenuous, and you are on the floor, which is nice. Anyway, I would just enourage you all to do whatever you can, even if it doesn't seem like much. Remember to listen to your body and don't push yourself too hard! Hope you are all feeling well! ~Meghan

Do you mean midodrine? Like ProAmatine (that's the brand name)? If that's what you are referring to, I take it. I have been taking it for about a year now and have not experienced any negative side affects. It has helped a lot to keep my blood pressure up and reduce syncopal episodes and dizzyness. I am very thankful for this drug! I have not heard anything about doctors no longer prescribing Midodrine in Birmingham, Al. Actually, if they are I would be curious to hear why. As far as I know, it's safe... but perhaps they have found contrary information? ~ Meghan

Beverly, I, like many others, get much more symptomatic around my period. The week before and a few days after my period are always the hardest days each month for me in regards to my POTS symptoms. You had metioned Seasonale, and I wanted to comment about that. It's actually not a patch (although there are birth control patches) but a pill. You take the pills for three months and then take inactive pills for one week so that you get your period. The thought is that you only get your period 4 times a year (once each "season"). I thought that this drug would be really helpful since I wouldn't be getting as symptomatic because I wouldn't be having my period, so I tried Seasonale this summer (on the recommendation of my POTS doctor and a OB-GYN). The first month I was fine, but about half way through the 2nd month I started to get really bad cramping. For a few days I experienced the worst cramping I have ever had. I could barely walk or stand up, all I wanted to do was lay in bed. I ended up passing a 5 inch blood clot (sorry to be graphic). It was horrible. Needless to say, I stopped taking it. I also tried Ortho- Tricylcen Lo which is supposted to have a very low occurence of side effects, but I experienced bad cramping with that one as well, and so my doctor told me to stop taking it. All people react to birth control pills differently, and I just do not react well to it apparently. However, Nicole may be fine if she took Seasonale... I just wanted to share my experience with it. Hope that she's feeling alright! ~Meghan

Ernie, I also have dreams where I am fainting. When I actually faint (in real life) and am coming to, I start to shake uncontrolably, and this happens when I dream that I fainted. I wake up from the dream shaking... it's really strange. I have no idea why this happens. Anyone else have ideas as to why this happens? Hope all is well with everyone! ~ Meghan

KateJude, I am in Grand Rapids too. I am originally from Chicago, but I go to college here in GR. It's so fun to make these kind of connections! Hope all is well! ~ Meghan

Paige, I'm sorry to hear that you have been so sleepy lately! I do have a suggestion for you. I take a medication called Provigil to help with fatigue. It's actually an anti-narolepsy drug which is used to prevent sleepiness during the day. My POTS doctor prescribed it for me because I was tired all the time, and it has helped a lot. (I took it for a month or so and got bad stomachaches, went off it for awhile, and now he has me back on it; it's been working well this time around. I take 50 mgs twice a day, once at 8 AM once at noon). Something like this might be able to help to keep you more awake during the day. It might be worth talking to your doctor about. Hope that all is well! Best Wishes, Meghan

I really like Nina's suggestion. I think it would be short and sweet, yet convey a great deal. How are we going to make the final descision as to what the bands are going to say? ~ Meghan

I too wear a Live Strong bracelet in honor of my grandma who is battling cancer. I think that it would be a great idea to create a similar bracelet for those with dysautonomia. Mightymouse/Nina, I love all of those quotes- they are very fitting. One of own favorites is "I get up. I fall down. Meanwhile, I keep dancing." (Hillel) It has very real, literal meaning for those with dysautonomias, as well as symbolic meaning. Athough many of these quotes are great, I think we need something much shorter, like one or two words. I was thinking that a word such as "persevere" could simply but effectively convey the persistent spirit with which we endure each day. I think a word such as this would be a challenge and encouragement to keep going, even when things are hard. Keep us updated as you try to work things out with this project! ~ Meghan

Fritzp, I'm sorry that you haven't been feeling well! I am 19 and I have POTS. I was diagnosed in December 2003, but I think I've had it for well over a year now. I know that it can be really frustrating to be sick; if you ever need to talk, feel free to IM me. My AIM screen name is Meg6327. Best Wishes, Meghan

I take Seasonale. I've been on it for over a month now, and I really think that it helps. I also get symptomatic around my period, and so my POTS doctor suggested that I think about birth control. With Seasonale, I am only going to get my period four times a year, which means I have to deal much less often with the symptoms I experience around my period. I would encourage you to talk to your doctor about it! Best Wishes! ~Meghan