kristinp29

Hi Sue, How are you? I'm new to this forum since the last time you posted anything...so hello!! I know how addicting (and oddly comforting) the whole daytime sit-on-the-couch-and-watch-as-much-TV-as-possible routine is. I was homebound for about 2.5 years and for a lot of days the only thing that I could handle doing was watching TV! It was tough to break the habit, but oh so rewarding. Do you like reading? That's the other thing I did a lot of (when I felt up to it), and I still read a lot, though not for pleasure--I'm a college student now. Wishing you the best and hope to hear more from you, Kristin

Hi, Yes, I've had the same symptoms...though not at the same time like you did. I'm sorry you had such a bad episode. My body temp can get totally crazy. I don't usually have problems with getting freezing cold anymore--except my hands and feet--but in the summer, I get way overheated. I dread the summer. Anyway...it looks like everyone's already given a lot of good advice. I'm late again on this topic!! When will I ever be on time!!?? Love, Kristin

Just a question...does anyone really know why???? If you do, please enlighten me! I just know what POTS and dyautonomia is and that it can make you feel all of these things!! Love, Kristin

Good luck, Nina! I'll be thinking of you this morning. Kristin

Hi everyone, I'm a little late on this topic, but I wanted to post about my experience with cognitive problems. I was a freshman in high school when I first got sick with POTS. By my sophomore year, I had to be homeschooled because the symptoms were so bad that I couldn't attend school. One of the symptoms was cognitive issues--memory, comprehension, etc. Sometimes, it was to the point that I could not read a sentence and understand anything that was being said. I posted about the nutritional program I'm on under opus88's nutrition topic. I take a product called Ceralin, made by Metagenics. It's a pharmaceutical-grade nutritional supplements that has brought my cognition up to 100%. When I'm on Ceralin, which I take once a day, I don't notice any problems at all. Cognitively, I feel like I did before I got sick. It takes about 3-4 weeks to build up in your system enough where you really notice dramatic improvements. I highly recommend it because I'm amazed at how much it's helped me. You can get Metagenics products through a health care practitioner, such as a nutritionist, chiropractor, or (if your doc is willing, because some are not) a doctor. I've been so fortunate, because my mom is a nutritionist! Hope you're doing well! Love, Kristin

Hi! The only treatment that my body has been able to handle is a nutritional approach. My body is too sensitive for medications--they all cause too many difficult side effects. I've been on a nutritional program for over 2 years and I am almost completely healed. I've gone from being homebound and homeschooled to going to college (I still live at home, though. I was too afraid to leave after all this happened and because I am still only 17 ), volunteering once a week at my church, and getting involved in a club on campus. I don't have a job yet. I'm focusing solely on my studies until the summer, working back into a "regular life" slowly, to void off any setbacks. I see a nutritionist, who just so happens to be my mom (how convenient!! ). She reevaluates me every 3 months to adjust my nutritional supplements accordingly. I take pharmaceutical-grade products, which are much better regulated than over-the-counter supplements and can only be obtained through a health care professional, such as a nutritionist, chiropractor, etc. Nutrition has truly given me my life back. My neurologist, who sees many other patients with POTS, has called me a "miracle". I suggest to anyone who hasn't attempted this avenue and is still having problems with dysautonomia to give this form of treatment a try. It could really change your life. Please send me a message if you have any other questions, as I don't want to overwhelm all of you with a book!!! I'd be happy to answer further questions about nutrition, my health, symptoms, etc. Love, Kristin

When I first got sick, I was tested for diabetes, but everything was normal. Over the years, I have had symptoms of hypoglycemia and still do on occassion. Generally, I need to eat every few hours or so otherwise I get tired, warm, and... kind of cranky . But, once I eat again, I'm good to go! --Kristin

Hi Patti, I was 15 during my first summer with POTS. My body was so incredibly cold that I wore a heavy sweatshirt and jeans in the hot, humid Wisconsin weather. The following summer, I experienced hot flashes and would start sweating profusely. I think our bodies sometimes have a terrible time with temperature regulation and we do become "immune" to the temperature of our surroundings. Plus, I think hormones have a LOT to do with it...and being that she and I are both teenagers...I think it just exaggerates everything. Unfortunately, I didn't find a "cure" for the body temp. regulation problems. They passed with time. Like you're currently doing, though, I wore thin, short-sleeved shirts, had fans going, air conditioning, etc. I'm sorry to hear that Chrissy is having those problems. Best wishes to you both, Kristin

Thank you for your replies!!! As I sit at the computer with my frozen feet, I think I'll put some of your suggestions to use! Love, Kristin

That's very interesting! Thanks for sharing! Don't you love it when doctors actually take the time to talk with you?!??!

Hi Dawn, Yes, I did see Dr. Rhead at Children's. He was wonderful! If you make an appointment, see if you can get Angela for a nurse. She's a sweetheart. They're very caring and incredibly thorough. I was impressed. I had to go see him because I was not yet diagnosed and my aunt has mitochondrial myopathy. She sees Dr. Rhead, too. Love, Kristin

Congratulations, April!!! At 17, I've never been pregnant , but I have a cousin (she doesn't have POTS) who just had her baby a month ago. In the last several weeks, she was sleeping A LOT!! She was so incredibly exhausted and took naps during the day. Maybe it's normal to be that tired so close to your due date....? Love, Kristin

I used to get that nervous feeling, too. It's scary, but nothing terrible ever happened, even though I really felt it would. The pain also sounds similar, though I'd get it in a bunch of different parts of my body. There wasn't a pattern or anything. Have you talked to your doctor about falling asleep during the day? Love, Kristin

Hi Janet! Welcome to dinet! I'm new here myself; I was previously a member of a different organization as well. There is soooo much great info on this forum and an abundance of great people as well. Looking forward to talking with you, Kristin

Kristen, I hope you are feeling better today. It must be hard having the responsibility of taking care of your children while you are so sick. I was so blessed being the child while I was sick, with the parents taking care of me. God bless your heart for being strong for them. Love, Kristin

Best of luck, Emily! I'll be praying for you! Love, Kristin

Hi, Now that it's winter here in Wisconsin, it seems like I just cannot keep my feet warm. Even when the rest of my body is toasty warm, my feet are freezing. It doesn't seem to matter if they are in two pairs of socks and some slippers, they're still cold!! Have any of you experienced this problem? If so, how do you get your feet warm? Thanks! Kristin

I used to have a terrible time with water retention. Some days I would need to wear jeans that were a size bigger than what I would normally fit in. I don't really have that anymore, but some days I do notice that my stomach is a little bigger and the ring I wear every day is a little tighter. It doesn't seem to affect what clothes I wear, though. Last spring, I gained 12 pounds in 3 weeks. It was insane! I didn't eat anything out of the ordinary. Besides, I would've had to eat like a horse to gain that much in so little time. It was sooo frustrating because I couldn't exercise more to work off the new inexplicable weight. It took me about 5 months to get rid of it. Ever since I got sick with POTS, I've struggled with the weight issue (whether it's water retention or regular weight) because, I think, of the sheer lack of activity. I'm doing better now that I'm feeling better and getting back into going to classes, etc. But it's still difficult because I can't just do a cardio workout, you know? Anyway, I'm rambling.... Love, Kristin

Though I have no experience with antidepressants...YOU ARE NOT "NUTS"!!!! And please don't think you are!!! You're successful--look at what you've done with your degree. That's fantastic!! What an accomplishment!! Don't worry about getting a job out of your home if you are too ill right now. Have you considered writing? I don't know what you received a degree in, but there are several things that you can do from your home. Many writers will search for a person to conduct research for them. You can do that from home! Just some suggestions... Love, Kristin

Welcome home, Dawn! I'm glad to hear that you're doing well! And, surprised too, that after so many months after meeting you to find you on this forum!! I'm glad to hear that your daughter is doing well after you took her off of the meds. What a blessing. That is fantastic that you were able to meet with knowledgable (and understanding) docs at Mayo. Mito is what you've suspected all along, right? What did your muscle biopsy show? Love, Kristin

An afterthought... water!! I drink sooo much water during the day and it really helps. Stay well hydrated! It's a good thing, even though I pee more than anyone I've ever known!! Kristin

Hi Haley, Like Gena, I can't answer your 2nd question. I can't eat much sugar, because it negatively affects my muscles. Also, having a lot of bad carbs (bread, junk food, and, sometimes, potatoes) has a negative effect on my body. Hope you're doing well! Kristin

Good for you, Julia!!!!!

I'm coming in a little late on this topic, but.... My hands are either freezing cold or hot and sweaty. There's hardly ever a happy medium. Of course, I'd prefer the freezing cold, because sweaty hands are a hassle...and embarrassing when it comes to a handshake. I've found that sometimes, when my hands are lower than the rest of my arms for a while, the blood tends to pool in them. That makes them warmer, so I try to keep them at the same level as the rest of my arms whenever possible. I've just recently figured this out,so I haven't had much time to experiment to see if this stops the sweatiness. Hmm...that would be nice! Kristin

Good luck, Kathleen! Best wishes, Kristin