shannon

Hey Diana, That's great that you are a research participant!! I think I am in the same study as you. Good luck at your appt with Dr. Low!!! Shannon

I have had good experiences with Dr. Low. He was the first doctor I saw that really understood POTS, and he really validated all of the symptoms I was going through. Also, I have heard from several ppl that he is tough to get an appt with. I got in very quickly though. My local doctor called Mayo Clinic to tell them he didn't know what to do with me and that my test results were whacky. They got me in within a week or so. If you have a doctor who is willing to give you a referral, that seems to be the quickest way to get in. Good luck! Shannon

To me, it makes sense for a neurologist to treat POTS. I've always thought that if I were to go to a cardiologist and then to a GI specialist, both would just treat each symptom seperately. But I think that a neurologist is more likely to look at the body as a whole....which is very important when it comes to POTS. Don't get me wrong...I've had my problems with neurologists too, but some can be very helpful. Great topic!! Shannon

Dayna, Ohhh, I wish I could just make all of your symptoms go away!! I'm so sorry that you've been this sick. I think "old lady lighthead" is right, though. You are quite clear in describing your symptoms. These types of symptoms can be very difficult to trace back and describe, so you're doing a great job. Here are some of the things I have done to be prepared for doctor visits: --- Kept a health journal --- wrote down everything I wanted to say to the doc before the visit * Remember: The doctor is there to serve you. Try to get all you can out of the visit. Some other ideas: --- Bring a DINET brochure with to your doctor visit. Point out the symptoms that match your's. --- If your doctor is not familiar with dysautonomia, you could ask him/her to call up a doctor who is (there's a list on this site) and get some tips for how to treat you. --- Be honest with your doctor about your symptoms. You are obviously experiencing extreme health problems, and you have the right to seek adequate medical care. If your doctor does not believe you, perhaps he/she is not the best doctor to be treating this particular disorder. I hope you start having some better days soon, Dayna. Take care! Shannon

Kristen, That's awesome!! You should be so proud of yourself!

Hi, I did allergy shots, and they have helped those symptoms. The only confusing part is that my POTS onset came shortly after I started the shots. My doctors don't seem interested in whether or not the two are correlated, so I don't really know. Regardless, I chose to stop the shots when I got sick with POTS. Do you have an autonomic doctor or any other doctor who understands the complexity of POTS? It may be a good idea to consult with him or her since your Allergist may not completely understand POTS. Good luck!

Gracie, Sounds like you've had some really tough days. That stinks! I have been wondering about the time change too.... I woke up with a migraine on Sunday, and it won't go away despite lots of sleep. I think this might be because of some adjustments with my meds though. Who knows. Sorry I don't have any good advice for you. Just wanted to let you know I'm thinking of you & I hope you start feeling better soon.

I am so excited!!!!!!! I just found out that there is going to be a "Walk for Dysautonomia" just hours from where I live this summer. I had no idea that the National Dysautonomia Research Foundation was located in MN until I found it online today. It will be so cool to be around people who know what POTS is. YAY!! If any of you are interested in participating in the walk, just PM or email me, and I'll give you the link to the website where you can register. It is in Red Wing, MN....right along the Mississippi. Hope you're all doing well Shannon

Hi there, I am so sorry your symptoms are hitting you hard. That stinks! I've also dealt with serious relationships during tough points in my illness, and I've learned that honesty is the best policy. If this guy is truly in it for the long hahl, he needs to really know you (and vice versa). I know it is tempting to put on a happy face and pretend things are okay. Trust me, I have done it! Personally, though, I think that it is very necessary to have people in our lives who we can be real with. People who will listen when we say that we are in pain, both physically and emotionally. Lately, I try to keep a positive attitude by telling myself that POTS is not who I am...it is just something that I happen to have. I refuse to feel guilty for needing extra rest. And I try to be honest with my friends and family about my symptoms. To me, lying about them would mean that I am ashamed. And I'm not ashamed of having POTS. Take care & I hope you start feeling better soon

I'm actually glad this topic came up. I drive when I don't feel potsy. When I get sick, though, I don't feel like I should drive. I've had to ask friends to drive my car before. Before these posts, I felt dumb doing that...like I was overreacting. Now I realize I did the right thing. Especially since that thing about getting sued was brought up...I never thought of that!!

YAY!!!! I am so happy for you!! :D :D

Indeed, I am very lucky to have Mayo Clinic right in MN. It does make the travel more affordable!! For those of you who may be able to participate in the study, Mayo's department of neurology can be contacted at 507-538-1037. Inform them that you are diagnosed with POTS and are interested in being a research participant with Dr. Low. It's worth a shot!

Hi Mary Jo, *HUGS!!!* Ugh, sometimes being sick just plain stinks, and so does all of the emotional stuff that goes with it. You don't have to feel guilty for admitting that. We're are HERE for you to vent to. I think it is sort of our job ---to keep eachother sane. You will always find support here!! I know that things are complicated right now, but don't forget the accomplishments you've made thus far. Not only did you make it through all of that schooling --- you did it while battling with your health. You are obviously intelligent and ambitious. As a college student battling through right now, you inspire me!!!

Well, I thought I'd give you all a report back from my trip to Mayo Clinic.... Lately, my main problem has been with nausea and keeping food down. Dr. Low thinks that my med Topamax may be causing a lot of that, so told me to stop taking it. I've been on topamax for four years (for migrains), so it is kind of scary to go off of it!! I think it is a good idea though. Then he wants me to try inderal.... when I was about 16, I was on inderal and my BP dropped so low that I couldn't get out of bed. So I'm a little nervous to go on that, but Dr. Low thinks that my BP will stay normal now that I'm taking mestinon with the inderal. I'm keeping my fingers crossed!! I also entered a 2 year long research program at Mayo Clinic. They are doing a study to determine causes of POTS. They also want to identify different symptoms among POTS patience so that when someone first presents with symptoms, the doctor will have a better guess of where the disorder is heading. Every 6 months I have to mail in a questionairre, and once a year I have to go in for testing. It won't interfere in my treatment at all. If any of you are interested in more information, you can PM me. If I learn anything more about the study, I'll let you know!!

Hey, Just thought I'd add that I've also been hearing things on the news about Ambien. It can cause sleep walking, and even "sleep eating," where people go into the kitchen and make meals and eat without even waking up. I agree that the med is worth investigating. There are many over the counter herbal supplements that help with insomnia...maybe it would be worth doing some research on those if you haven't yet. Good luck!!

I get the aching legs too. I don't know why, and I haven't figured out how to deal with it. When I wear my comp stockings, it seems like my upper legs are worse. But when I don't wear them at all, I'm in for trouble. I don't know what advice to give, but you're not alone! I'm going to Mayo next week....maybe Dr. Low will have some answers on this topic.

Name: Shannon Birthplace: Minnesota Kids: none Pets: one dog, named Odie (lives at my parents) Favorite color: lots of them... burgandy and yellow especially. Favorite flower: Roses Kitchen theme: I don't have a kitchen (I live in the dorms) Favorite drink: Italian Soda Last TV show you watched: Little People, Big World (on TLC) Last movie you rented: I don't remember!! Favorite food: sweets Favorite TV show: Roseanne, Sex and the City Red or Pink: Red Favorite ice cream: Cheesecake blizzards at Dairy land...yumm! Favorite crayon color: orange Ever bungee jumped? Nope Eye color: Blue Hair color: dark blonde Farthest you have ever been: New York Siblings: 2 older sisters Last time you cried: Yesterday Favorite game: Apples to Apples Black or White? grey. Rollingstones or The Beatles: The Beatles....but I HAVE met the Rollingstone's trumpet player, and I know his daughter!! Last food you ate: Ritz bits Diamonds or sapphires: sapphires Beach or the mountains: Beach Sweats or jeans: sweats Ever went skinny dipping: nope Married more than once: never married What book are you reading now: Text books!! Hobbies: I used to do theatre and tennis. Favorite actor: Tom Hanks Favorite actress: Hillary Swank Favorite candy bar: Snickers Ever toilet papered someones house: no Gatorade: haha, that's the first time I've seen that asked in a survey. Umm, I usually buy the blue kind. Favorite Fruit: cantalope Men with facial hair? usually no. Steak or lobster: neither....but steak if I must. Gold or silver : silver. OK I know it's hard to sit this long-I'll stop!!!!!!!!!!!!!!!!!!!!! --------------------

I had actually forgotten about this suggestion! I think I read about it when I was first diagnosed, and was bombarrded with so many different treatment ideas. I never got around to trying it. But I did read about it in the Mayo Clinic library. Maybe I should give it a try. Good luck, hope it helps!!

Thanks, Poohbear

I've had a really crappy weekend because of POTS. I keep trying to think of people to call and talk to about it, but there's nobody. My mom is who I talk to about this, and she is out of town. So I'm just going to let some things out on here. Lately, when the weekend comes all I want to do is rest. I am just physically exhausted, and I look forward to the weekend so that I can let my body take a break. I know that I don't sound like the typical 20 year old, but that's probably because I'm not. I've learned that I shouldn't have to pretend that I'm healthy. But just when I try to validate myself, some friend comes along saying, "ohhh, you're FINE!!" They just don't get it. And it's like they don't even want to get it. On Friday night I stayed home. On Saturday, some friends wanted me to go this all day concert. I honestly didn't feel well, but I went anyways. This part of me felt like they would think I was a wimp if I didn't go. Sometimes I feel like they think I just stay home for sympathy or something. So I went, and I felt like crap. I hate going out when I don't feel well, because I know I'm not much fun. It makes me lightheaded to laugh. I can't concentrate that well on conversation. I just can't have fun, and there is all this pressure around me to be happy and fun. Then I wonder what they think about me, because I know that I don't "look" sick, so they don't really know why I'm not acting like my usual self. I hate it. I threw up after supper and really felt horrible, so I asked a friend to take me home. I don't want to feel sorry for myself. And most days I don't. I know that I've learned a lot and grown as a person through having this illness. But some days, it is really hard to think that way. Really hard. And today is one of those days. I just want to fit in with my friends. I know that sounds superficial. But I think it's natural. There are so many little things that make me different from them. And it feels like those little things pile up and pile up. I want my friends to believe that I am sick. Ahhhhh, sorry for writing so much. I think I just needed to get that out. Thanks

My weight has fluctuated regularly since I got sick by as much as 20 pounds. I have many different clothing sizes to choose from, and I never throw them away because I always think I'll end up gaining/losing weight again!!

Traci, I'm so sorry to hear about your struggles. I wish I could offer you some advice, but I was actually interested in your post because I am experiencing some similar symptoms right now. I'm glad you posted about it. Hang in there!

That's awesome!! Way to take action! I hope the it went well. Excited to hear about it.

This is so difficult to describe!! Ummm, I get really really warm, but I have chills (makes no sense!). I start to feel pulsating in my jaw and fingers, and my breathing becomes really shallow. My vision gets blurry...I feel sort of like a bobble-head (sometimes I black out or have ringing ears). Sometimes my legs feel weightless and other times they feel really heavy. I usually get nausea. I can't think straight, and I need to lay down. I've never actually fainted, though, which used to confuse the doctors.

Sara, I'm sorry I'm sure it's frustrating when even the people closest to you don't understand!! I know sometimes I want to explain to people that it's a lot more than just "getting a little dizzy" every now and then. I think people just have a tough time grasping all of the symptoms. I think Ernie brought up a good point. Have you thought about taking anything for the headaches? I take meds for migrains and POTS. You don't have to suffer through one or the other. You can try to treat both. Hope the headaches start feeling better!! I just thought I would also add that it's important to treat your headaches as early as possible. If you start treating it now, you might be able to get it under control. The longer you wait with migrains, however, the trickier it becomes to find the right treatment. ...