seaboardbc

Welcome. This is a great forum. I've been. member for several years. The other members have been very helpful. Post your questions or concerns and I am sure someone will have some feedback for you.

t was diagnosed with POTS 15 yrs ago. I noticed joint pain within a couple of years of my diagnosis. My rheumatologist told me that joint pain was common with POTS and other autoimmune conditions. I was taking so much Advil that he wrote a prescription for a narcotic pain mad. I didn't want to take it so I continued to search for a solution. Another doctor suggested IgG food testing. The results showed I have a delayed hypersensitivity to asparagus and shrimp, 2 foods I ate all the time. Within 2 weeks of cutting them out of my diet I noticed considerable improvement and within a month I was free of join pain. After 6 months I tried adding them back into my diet and the joint pain was back in 2 days so out they went and I haven't experienced joint pain since. Many doctors will tell you that a delayed hypersensitivity isn't an allergy. Call it what you like, my joint pain is gone.

I'm 53 and it hasn't gotten any better but on the bright side it hasn't gotten any worse

I had many awful experiences at Mayo. I don't know where you live, but I would recommend seeing Dr. Grubb in Toledo, Ohio. He has written several papers from his research on POTS. He is absolutely amazing! It may be quicker to get an appointment with his assistant Beverly Karabin, RN, PhD, CNP Nurse Practitioner. She is wonderful too! If you see Bev and she thinks that you need to see Dr. Grubb also, she will get you in sooner than just trying to get in with him yourself. Here is the link to their department http://utmc.utoledo.edu/clinics/hvc/Syncope_Center.html Dr. Grubb diagnosed me a 10 yrs ago and he always comes up with the new ideas to help me get back (or stay on) track. Both Dr. Grubb and Bev are very knowledgable, compassionate, and understanding. If you decide to go to Toledo, I can help you if you have travel questions. I grew up in Ohio and I am very familiar with the area.

I just stumbled upon this post and I watched the video. I have to say that I am completely disgusted. I am curious as to what Dr. Grubb thinks of this program. I think it is a medical setback for all of us who have POTS. I feel like they are telling these kids to just "deal with it" which I think in turn sends a message to the general public that POTS is all "in our head". I am an adult with POTS. I was diagnosed 10 years ago at the age of 41. I will be the first one to say that more times then not, mind, not medicine has gotten me through my day. However, I was an adult when I was diagnosed. I had a husband and two children. I wasn't a teen trying to deal with normal teen stress in addition to having a debilitating condition. I also had more years under my belt so I had experienced the light at the end of the tunnel in other situations so it is was easier for me to believe that there would be one in this situation. I have had several bad experiences with Mayo so this video doesn't surprise me at all. Punishing a kid for not going to school when they are physically ill? That is absolutely crazy! I fainted this past March, hit my head on a glass wall and cracked my head open. My 11 year old daughter had to call 911. I ended up with a concussion, stitches, and a horrible headache for days. All I can say is, thank goodness the situation wasn't reversed (my daughter being the one with POTS). According to Mayo, I would have had to punish her for missing school. Do I believe that your diagnosis should consume you? Absolutely not!!!! However, I do believe the Pediatric Pain Rehabilitation Program at Mayo will do more harm than good to these kids in the long run. P.S. To all the parents of children with POTS, teach them life skills (on days when they aren't too symptomatic) and show them how to use these skills to deal with their illness. P.S.S. Yesterday I had my 11 yr old at the doctor because she needs orthotics. He told her that pain was your body's way of telling you that something was wrong and that when your body tells you something is wrong you need to listen (obviously he isn't a Mayo doctor).

I am so happy I started this topic. It helps so much talking to someone who understands. I had to laugh when I read what you wrote about the current generation sharing so much more than we ever did. I know exactly what you mean. We haven't seen Dr. Randy before. I live in Minneapolis so I see Dr. Grubb in Ohio. My daughter moved down to Alabama about a month after her diagnosis ( she was diagnosed in Minneapolis). Although her doctor in Minneapolis was able to make the diagnosis (i think because he was aware of my diagnosis and he knew about the tilt table test) he really didn't know how to manage it. I found Dr. Randy from this site. I watched the POTS video and he was great! My daughter is excited to see him because she feels like she is finally seeing a doctor that "gets it". If I were closer I would go to the appointment with her. I hope it goes well. I am afraid that if she talks about me she will make me sound like someone who doesn't get it rather than someone with dysautonomia. When I was diagnosed I went through all the stages you go through( denial etc) i just went through them really quick. I have always lived my life with you play the cards you are dealt the best that you can.

McBlonde Thanks for your feedback. It is good to hear from someone else in my shoes. I have insisted that she talk to a counselor and I have also shared with her that physically it is too much when she dumps on me. Her reasons for refusing to go include: she doesn't feel well enough to go, it's bad enough having POTS that she doesn't need to spend time talking about it (but she is talking about it to me), it won't do any good because she is sick and she isn't going to get better. When I distance myself from her ( because I just don't feel well enough to deal with it) she becomes more depressed and eventually finds a way to dump on me again. She is actually living with my brother 1200 miles away from me because we all (including my daughter) thought a change of environment might do her good. Nothing has changed and most days she calls me several times a day and night. When she was a teen she was diagnosed with depression but she seemed to be doing better for awhile until all of the POTS stuff (i even wonder if some of the mental health diagnosis was really POTS). My husband is great and he has really taken on a lot more responsibility to try to make things easier for me. When he tries to talk to her she rarely talks about her health. If he brings it up, she changes the subject. I don't know what to do.

Hi I was diagnosed with pots about 10 years ago at the age of 40. I am (if there is one) a typical POTS patient. My symptoms include tachycardia, angina, fatgue, Raynaud's, dizziness, fainting, heat intolerance, joint pain, GI stuff, brain fog, visual disturbances and probably some things that i have forgotten to mention. I have good days and bad days, but I never have the kind of good days I had pre-POTS. I look very healthy, which on days when I am feeling particularily awful, I find to be a disadvantage. When I asked Dr. Grubb if I would ever have a normal life again, he said yes but I would need to change my definition of what was normal for me, which I did. I have lost friends because they don't understand. I can't work in the career that I had pre-POTS. However, I am dealing with my condition very well. My positive attitude has been a lifesaver for me. My 24 yr old daughter was recently diagnosed with POTS. She has an appointment with Dr. Thompson next week. Currently her symptoms aren't being managed at all. On top of it all she is very depressed about her condition (understandable). We have very different personalities. My glass is always half full where her's is half empty (she says she is realistic and that I don't deal with things-- of course I disagree). My question is, I am the only one that she will talk to about how she is dealing with the POTS diagnosis (which isn't good). Of course I never say the right thing, I don't understand, "she has it worse" etc. She refuses to go for counseling. It is very difficult for me physically to give her the time she would like not to mention draining and non-productive to listen to her. I don't know what to do. I feel awful seeing my daughter suffer, I feel responsible because of genetics (although she doesn't blame me because I wasn't diagnosed until she was 14 yrs old), and as someone sufferring from POTS, it's hard for me to listen to, especially on days when I am not feeling well. I would love some feedback from anyone out there that would be willing to share it with me. Thanks

I exported a photo from iPhoto and to my desktop as a jpg file. When I exported it I chose "low" quality and "small" size. If you have a PC I am not sure how to do it.

It was very validating to hear others talk about their experience with POTS. It really hit home when Dr. Thompson talked about his showering experiences. I look very healthy, but sometimes I find looking healthy to be a disadvantage. For example, people often make ignorant remarks or give me dirty looks when I park in a handicapped parking space (one women, after calling me every name in the book, told me that she was going to call the police on me for using a (my) handicap permit). The ironic thing is I only use handicap spaces on days that I feel "really bad" (I have to laugh, "really bad" is all relative, right?) One of my best doctor visits was a routine visit to my endocrinologist. I was feeling particularly miserable that day (so miserable I almost cancelled my appointment...too sick to go to the doctor, pretty funny, huh). I looked good though and I figured she had no idea how I was feeling. The first thing she said when she walked in was that she felt sorry for me because since I looked so good and she knew that most people didn't realize that I felt awful. The empathy she displayed got me through that day and many other days. I don't even know if she realized the power of her words. Thank you to everyone who made this very powerful documentary. I plan on sharing it with my doctors, my family, my friends, in fact I might have the YouTube link printed on a card so that next time someone gives me a dirty look or asks me facetiously what is wrong with me, I can simply hand them the card and walk away. Thank you, thank you, thank you!!!!

Thank you so much, McBlonde! Dr. Thompson is a little over an hour away from her. We will call him tomorrow. ChristyD, thanks for the tip about Dr. Lee. It is good to know that there is someone in Gulf Shores who knows about POTS. Thanks again!!!!

My 24 year old daughter was recently diagnosed with POTS. Unfortunately, because her condition was only recently diagnosed, her doctors are still trying to find which combination of medicines work best for her. She is spending the summer in Gulf Shores, Alabama. She really isn't feeling well and would like to see someone close to where she is living now. I am hoping that someone out there might be able to suggest a few names of doctors in her area. Thanks!

I was diagnosed with POTS 8 years ago. I don't faint often but the past year and a half I have the frequency of my fainting episodes has increased. Usually when I faint, I feel some kind of "warning" such as chest pains or feeling lightheaded. I fainted the other day without any warning and afterward I had no memory of what happened to me. Here's what happened. It was about 5 am. I remember laying in bed contemplating whether or not to get up for the day. That is the last memory I have before fainting. Apparently I got out of bed and then I fainted. When I fainted, I hit the back of my head on the wall and ended up in the ER. I needed stitches and I had a mild concussion. I had no idea or memory of fainting. I thought that I had fallen out of bed, but it was apparent from my location in the bedroom that I fainted because the wall that I hit my head on was way to far away from the bed to have simply rolled and hit my head. I am really bothered by the fact that I have no memory of what really happened and I am wondering if any of you had had a similar fainting experience. Thanks Bren

Happens to me too (like dizzy blonde). Sometimes it's worse than others. It really freaks me out. I am careful about what I eat and I make sure I chew well and drink something when I swallow, but even that doesn't always help. I can handle it the way it is now, but my (secret) fear is that it could get worse.

Hi I am wondering if anyone here has been diagnosed with Bartter's or Gitelman's Syndrome in addition to POTS. I was diagnosed with POTS about 9 years ago. My 23 year old daughter has many "POTS-like" symptoms. She was recently diagnosed with Bartter's Syndrome. I realize it is a difficult condition to treat, but she is not doing well at all and I'm wondering if she could also have POTS. Thanks Bren