kristinp29

Just one more thing.... DON'T SETTLE!!!! Love, Kristin

Hi Brwneyedchica, I feel for you! As difficult as it is, I think it's best that the two of you broke up. If he doesn't have what it takes to be with you, then he's not worth it. The right one will come along and will love you in spite of (or love you even more because of) your illness. For him, it won't matter if you get tired easily or need to stay in a lot--as long as he's with you. Here's to finding that perfect guy!! ~Kristin

Michigan Jan, Don't compare your exercise program to anyone else's!! We all go through our rough patches when we aren't feeling quite as well or are extra fatigued. I wasn't able to be extremely regular with my exercising the past 2 weeks because I was fighting a virus and my body gets a little more tired when it's fighting something. Just take heart in the fact that we all hit bumps in the road--and we perservere. Love, Kristin

Jan. your story is so inspiring. I'm 5'3", weigh 153 lbs, and am in a size 10. I have a very muscular frame, so I don't think I'll ever get below 145 lbs or get below a size 10. I carry a little extra weight all over. It's difficult to target a specific area because of that! I really don't eat that much; I'm not crazy about food. But I do love chocolate and cake. Not that I eat it a lot, but I do crave it! Diabetes runs in my family, along with a slew of other health problems. Just recently, I decided to make a pact between myself and God. Somewhere in the Bible it says that you need to treat your body as a temple. And, well, I know that eating cake and chocolate isn't exactly temple-like behavior. So, I literally typed up a document with a written pact that I would treat my body like a temple in regards to eating, etc. and I signed it! Now I feel like I'm being held accountable and keep myself in check. Anyway...thanks for further inspiring me. To everyone else who posted that they, too, struggle with the weight issue--good luck. I believe in you and am behind you 100%!!!! Love, Kristin

Hi Lynna, I don't know how old your son is, but I got sick with POTS when I was 14 and in my freshman year of high school. I didn't get diagnosed until I was 16--and now I'm 17.5 and in my freshman year of college, no longer experience any symptoms, and am just continually rebuilding my endurance. Ahhh...doctors. People will tell you that your son has anxiety issues. I've heard it all before. Especially since your son is an adolescent, you'll face the whole "he's stressed out because of school thing". If your son is in high school, it will be even worse that way. Bottom line--your son gets symptomatic when he stands up because he has orthostatic intolerance, not because he suffers from anxiety. Let me know if I can help in any way, answering any questions, offering any support. Being that your son is young--like I am and was--maybe I can offer some suggestions/support. I'm here to help. I'm glad that you found this forum. You'll find a lot of great people and great help here. Love, Kristin

Amy, You're not alone. I had the bone pain, too. Is it worse for you in your joints? Tearose--I'm almost positive that you're right. It's not muscles or bones, but the nerves that run through them. It makes sense, considering it's our nerves that our damaged. I know I say "I've had that, too" a lot, everyone, but to be honest, I have had nearly every symptom you can think of. Probably the only thing I never had was fainting. So, for those of you who faint--you've got one on me. *giggle* ~Kristin

Sorry for the double post--I just read what others were saying about magnesium and wanted to say that, from my experience, magnesium has helped a lot as well. ~Kristin

Hi TexasGrrl, I had migraines for a long time--5-7 times per week. I tried two different medications for them, but my body was always too sensitive with POTS to handle any meds. I guess I just got used to living with them. You know, you kind of adapt as best you can. I mean, it's not like the pain goes away or anything; you just learn how to function with it. At that point, I was too sick to function very well, so it wasn't that difficult! *shrug* Within several months, that symptom passed, as have all the rest of my symptoms. They always seemed to go in stages. Strange... I hope the medication you're on will work for you. Best wishes, Kristin

Hi Katherine! Have a wonderful time in Colorado!!! I absolutely loved it when I went there. We did the whole Pikes Peak thing and I did well. Although, I was very cold. It was late July and 88 degrees below, but only 48 degrees at the peak. I was wearing shorts and was freezing my butt off. Come to think of it, we made that trip before I got POTS. I got POTS in September of that year. Since getting POTS, I've been to the Grand Canyon, the mountains in California, Oregon, Washington State, Idaho, and Montana and did not have any problems. It was absolutely breathtaking--the view, that is. Have a great time and let us know how it goes! Love, Kristin

Blackwolf--I'm excited for and proud of you!! Tearose--New jeans. That sounds fantastic. I'm thinking a new spring wardrobe. Pretty soon.... ~Kristin

I lift 5-lb weights and target the muscles in my arms and back. I don't do any more than 5-lbs because I don't want to look like a bodybuilder! For my legs and butt---I do different exercises, one of them is squats (without any weights). For my abs--crunches. Crunches are easier to do if you have an exercise ball that you lean against. If you use that, then it is not such a strain on your neck. Other than that, I walk on the treadmill. Our treadmill came with 2-lb weights and sometimes I hold onto those to get a better workout. So...that's what I do! ~Kristin

Hi James, Some people seem to do better in the summer, and some do better in the winter. Personally, I do better in the winter, so I absolutely LOVE winter! I live in Wisconsin, so the cold (or cool) weather lasts a little longer than 4 months. The summer, on the other hand, is really humid and can get very hot. I don't handle humidity well, but I have air conditioning in my car, so that's a lifesaver. About water---DRINK UP!! I carry a water bottle with me all the time. I think it really makes a difference. I feel more energetic when I'm well-hydrated, even though I have to pee a lot. The work thing---I can't answer that. I haven't had my first job yet! I'm a freshman in college and anticipate getting a job in the summer. Until then.... Kristin

Mary, When I was reading about how you started out with POTS, my mouth just dropped. It sounds exactly like me! I started out with severe diarrhea; I was practically living on Imodium in order to get to school (I was a freshman in high school at the time). I did lose a little weight at that time, which was astonishing because I was constantly hungry and was eating almost constantly. My stomach felt as if it were eating itself. I went through the whole GI workup at the time, too. I wasn't diagnosed with anything, but my doctor had put me on Nexium and wanted to put me on something for IBS (irritable bowel syndrome). I said no. The Nexium didn't help at all, either. And then you have the weight gain....amazing. We must have the same form of POTS or something. It was devastating for me, too, because, well, I'm a teenage girl for goodness sake! You're not doing anything wrong! You eat very healthy--you even make great choices when you eat out. You are very active. Have you tried strength training? It won't help you get the weight off immediately, but it will build your muscle mass and the more muscle mass you have, the more fat you burn. Plus, I've noticed that the stronger my muscles are, the easier it is for me to recover from an episode or I can avoid one altogether. Just a suggestion. Don't worry about venting! I know how horrifying it is to find that you've gained all that weight, in so short a time, for no apparent reason. Email me anytime if you want to vent! Stay positive! Kristin

Gena, No, you're not the only one! I used to get so worked up about it, that I would get symptomatic and not be able to go at all. *sigh* Yeah, that was not fun! It didn't matter if it was something I was really excited about or something that I was dreading. I didn't have time to read anyone else's replies, but I just wanted to let you know that you're not alone! Now, I've got a paper to write.... Kristin

Thanks, geneva. Encouragement--that's what I'm hear for. And don't ever forget it!! Love, Kristin

Hi Miriam, My muscles had a hard time with all the sugar in Gatorade. I found something called "Smart Water", made by Glaceau. I've bought mine at Pick 'n' Save, and have seen it at other grocery stores and health food stores, too. It has magnesium, potassium, and...something else in it. Anyway, it restores your body's electrolytes. It's clear and it tastes like regular water (even better than regular water, I think!). Hope this helps! Kristin

Hi Mary, Ugh...20 pounds. In what kind of a time frame did you gain that weight? Last spring, I gained 16 pounds in 3 weeks. I wasn't on any medication and I didn't eat anything out of the ordinary. It was purely POTS. Joy. It took me until September to work it off, being that I couldn't just go out and start jogging every day, you know? Hang in there, hun. Let me know if there's anything I can do to help (moral support, etc.). Kristin

You are so right! I'm so proud of you for starting an exercise program. It is so helpful. I've been on my own little exercise program for about 2 years or so. I mark everything that I do down on a special exercise calendar and I keep every year's calendar. It's amazing to see the improvement. Now, the little spaces for each day are getting very full. I started out with all strength-training stuff and now I do that every day and the treadmill about 4 times per week. Exercise helps sooo much! I was homebound for 2.5 years and now I'm attending college. Last semester I took 6 credits and this semester I'm taking 9 credits on-campus and 3 online. In the fall semester, I'm planning on transferring so that I can live on-campus and attend on-campus full-time. Yay! The exercise has helped tremendously, but nutrition is what truly gave me my life back. Anyway...I just wanted to say I'm with you and I'm proud of you! Love, Kristin

Hi Katherine, I had these symptoms when I first starting experiencing symptoms from POTS, and nothing was ever found GI-wise. When I was diagnosed about 2 years later, my neuro told me that this was simply from POTS. Hope she finds relief. Love, Kristin

Hi Ann, I can't point you in the direction of any articles/info. But I can tell you that I've experienced the same symptoms. I have POTS and in the beginning when I started noticing symptoms, the diarrhea is what hit me first. I don't recall if at that time I also experienced shakes, but those started for me several weeks after the diarrhea. I wish I could help you more! Kristin

Hi Amy, I see Dr. Safwan Jaradeh at Froedtert Memorial Lutheran Hospital in Milwaukee. Gotta love Wisconsin! Kristin

Ugh...yes, sweaty feet is a whole 'nother issue... Kristin

Hi Radha, Sorry I didn't see your post until now. This was my first week of classes for the spring semester and it was a hectic week. But, I'm done--I have Fridays off this semester!! I'd be happy to tell you what worked for me; however, my program changed about every 3 months as my body changed and needed different things. Plus, your body is most likely much different from mine in what it needs and what your symptoms are. And, honestly, my program has changed so much over the past 2 or 3 years that I can't remember every little thing I was on!! If you want, you can send me a personal message and I can answer more about this privately. My symptoms...well, I used to have memory problems, comprehension difficulties, orthostatic intolerance, tachycardia, lightheadedness, migraines, numbness, tingling, severe pain, shooting pain, debilitating fatigue (it was like an intense heaviness centered in my body), episodic paralysis (arguably the most unsettling!), anxiousness, hot flashes, .....I could go on and on. I was homebound for 2.5 years with all of this stuff. Now, the biggest thing I face is rebuilding my endurance. It's a slow process, but my body is healing steadily and I'm extremely hopeful. We redid the autonomic test (tilt table, etc) and it showed remarkable improvement compared to when I was so ill. I meet with my neuro every 6 months to check in--and this summer will probably our last meeting because he says I'm ready to be discharged!!! I also had problems in the early fall yet when it was very warm and humid. I live in Wisconsin, so it'll be a few months (hopefully) before I have to face that weather again. Last summer was the first summer I didn't get progressively worse, and actually got a little better, so it will be interesting to see what this summer brings. I don't want to write a book here, so if there's anything more you want to know, please email or send me a personal message!! kpare29@mail.com Hope this helps! Love, Kristin

1. Kristin 2. Ooo..that's tough. I like a lot of books! The one I'm currently reading is called A Matter of Character, about Pres. Bush. 3. Forrest Gump (YES, FORREST GUMP!!! ) 4. Family, friends, music, laughing, prayers, class, love, hugs, kisses...lots of things 5. Umm... I'm righthanded, an only child, and am having a terrible time figuring out which college I want to transfer to in the fall. Love, Kristin

1. Kristin 2. 17 (18 on June 29th!! yay!! ) 3. POTS 4. 16 5. Wisconsin 6. I don't have any of the bad symptoms anymore, but when I did: episodic paralysis, numbness, tingling, severe pain, shooting pain, debilitating fatigue, tachycardia, hot flashes, excessive sweating, orthostatic intolerance, excessive urination, body temperature fluctuations (dramatic), memory problems, comprehension difficulties, diarrhea, and a bunch of other odd symptoms that I can't think of at the moment. 7. Now, I just struggle with building up my endurance again. Occassionally, I have difficulties with my body temperature (I have a hard time in the summer) and fatigue. 8. Any and all drugs. 9. Nutritional supplements. My mother is a nutritionist who treats dysautonomia (convenient for me!) 10. My passions are politics, government, and writing. I am a political science major and am active in my county political party (I won't mention which one!) and college party club.