CC101

Jackie, that was so clever and nice of you to dedicate your blog to your Mayo experience. I am sure your blog has helped many of us POTSies. It was incredibly helpful and enlightening to read your detailed experiences of some of the tests that they run. Both you and AKS have made it quite clear the experience is exhausting but like I said before, since I have only had the tilt table test and a stress test for the heart, I am sure I would willfully suffer through it all as well just to get some clean-cut answers. I have definitely bookmarked your blog so that I can refer to it in the future. It was a big help; thank you! Aks – Wow thank you so much for your detailed response; I appreciate it so much! Your recommendation on gathering all paperwork and required materials beforehand is great advice. Thank you for specifying that Mayo will require the original films or DVDs of any scans etc. as I am sure not many people will think to do that. I do have some awful gastro issues so I am not sure whether or not they would look into any of that. I was diagnosed with IBS-C as before getting on medication I would literally only have one bowel movement a month (if that) & when that happened I would become so sick that my body would produce shock-like symptoms and I would feel as if I needed to be rushed to a hospital. I would have to take 2 days off a work every month due to this but have now been blessed with some relief from this by taking a medicine called Linzess. I am curious as to what type of gastro tests they do provide or carry out. Has anyone else had some unique gastro tests here in the forums? For now I have resorted to the idea of trying to mimic what Mayo does by trying to get my doctors to follow similar procedures. Also Aks, did Mayo refer the same type of exercise routine as they seem to always do for POTS patients? I am really looking into buying my own recumbent/row machine. I am not sure if I will embark on the Mayo journey but maybe after probing my doctors for a bit longer I may find myself with no other choice. Once again, thank you both for sharing such detailed information. It was beyond greatly appreciated.

Also, I forgot to add, is this kind of visit expensive? I checked the online page of my insurance carrier and it says that the Mayo in Rochester is in their network so I am wondering how that coverage would pan out? Did anyone end up with a very expensive bill? Thanks! =)

Hey all my fellow POTsies; I hope everyone is feeling okay today. I have not been active on the site for quite some time and I think it is because I have been in some state of denial ever since I was diagnosed and then for the most part ignored by my “team” of doctors. I tend to get all emotional when I start reading the boards on here as I am overwhelmed by all the similarities and then tend to focus on the fact that I am surrounded by people who cannot grasp even 1% of what I actually go through on a day-to-day basis. When my doctors are included in that mix it makes it even worse. I was diagnosed back in 2011 but have only been treated for my tachycardia. My cardio seems to think that is all he needs to address, my neuro is clueless, and my general doctor claims to know what I have but never offers any advice or recommendations (it’s kind of like he feels that if he ignores it, it will go away). The closest physician that is on the DINET list is 3+ hours away which is not something I could commit to on a frequent basis. It is no surprise that with these doctors I have not had any of the typical POTS tests nor have I been placed on any of the typical medications besides a beta blocker. This is why I think I could find great hope by visiting Mayo. I cannot seem to find much information on the POTS clinic at the Rochester Mayo Clinic. Is this something I can actually schedule? How long does it typically take to get an appointment and how much time would I expect to spend there? Any information on this particular subject would be greatly helpful and appreciated. I hope that in the future I am able to get much more answers and help so that I can fully participate on this wonderful site. I do not know what I would do if this site did not exist; it has been my escape from feelings of isolation. Thank you to you all and may many spoons be sent your way!

Before I got on beta blockers I was at an all-time low weight of 120 (My height is 5'5). Before pots, I was always about 130-140 and was mostly due to muscle tone as I was very athletic and played sports and danced and participated in acrobats. Now that I have been on beta blockers my weight has ballooned to 150-155. To get a more accurate reading on what you are trying to discover I would maybe add the options of weight before and after treatment(s). Before beta blockers I was probably the poster child of a sick-looking POTS patient but now I can't seem to get the extra 10 pounds of weight off Oh well, at least now I can actually look at myself in the mirror without cringing. I truly looked like death so I will take being a bit chubby and non-ghostly over that any day.

Thanks Rich, I looked up your post and have always been interested in trying something like that. Good for your health all around! =)

Monstrosity - I fully intend to request my doctor to our wonderful dinet site =) Peace - Thanks a bunch =) Fingers crossed that he will not think I am a whack job! The only thing with my neuro is he is of a different ethnicity so it is hard to communicate things sometimes (Can't ever just be perfect right? lol) .. but there has been multiple times I have been in his office for over 2 hours, not waiting, but talking. He never makes me feel rushed and is actually a joy to talk with unlike 99.9% of other doctors I have ever had. So, I am really hoping this works. Fingers crossed!

Yes Lyn I very much agree! Linda, in my first response to this post I asked if you could maybe type up a symptom list and what you deal with most. I am very interested on what is going on with you as I have not had the opportunity to learn more about you yet =) I Hope you are feeling better today!

Hi everyone. I hope you all are feeling as well as you possibly can today. I am going to attempt to educate my neurologist on POTS because he is my most favorite doctor I have ever had and he said he is willing to learn. I was just wondering if anyone had some recommendations to some links that would be best to take to your doctor when it comes to educating them on POTS. Reliable sources that they could trust, or things along that line. I would appreciate it so much! =) Thanks a bunch in advance & Big Hugs to you all! -CC

Linda, your situation makes me feel so sad. I can relate to you because even though I am not treated like you, I am living in silence as I have no large family or no close friends that understand what I am going through. But I must say, I would rather suffer in silence than suffer from negligence and insensitivity from my loved ones. My heart goes out to you so much. You know what I would do? I would take what you have written here & print it out & give a copy to each of your family that you wish to be heard by. Or write a new long letter for each of them and pour your heart out with all emotions, feelings, and opinions. I think the way you are being treated is so insensitive and I wish to see some changes happen for you. Holding you in my heart & prayers. Biggg Hugs!

So glad you found us Gloria, sorry for your circumstances but you are in the right place. I am shocked that you were not diagnosed after a TTT confirmed the hallmark symptoms of POTS. I would keep pushing until you get an answer .. possibly request another TTT. I am so happy to hear that you have a great support system, that is so important! Always know we are here for you as well =)

I 100% agree Jangle. Taking it slow and working up at your own pace is CRUCIAL to us POTsies =)

Rama this was incredibly generous of you to dedicate your time and energy. On top of this you answered all the requests of others on here since you are so knowledgeable on this subject. Thanks a bunch!

Linda I am so sorry that you are going through such a hard time right now and I believe we can all relate to what you are going through. Never feel sorry for venting, it is healthy for the soul and is also what we are all here for; unconditional support. As I have stated in another post, something that helps me tremendously is writing anything and everything that I am feeling in a journal. I cannot explain why this helps, it just does, a lot. I have not been here long, so I would like to ask what diagnosis's have your doctors ruled out? What are all the symptoms you have when you eat? I am so sorry you have not been able to receive any relief, but please, never give up hope. I think Katie was on the right track when she gave you those links. I tried searching the internet for an article I read a long time ago where a lady had symptoms like yours and for several years was unable to get a diagnosis. I could not find the link, but like you, she was unable to eat anything and after years of searching and countless doctors, she finally discovered what she had was severe food allergies. I will keep on trying to find that site and if I find it I will PM you. - Like Issie, I have always been the optimistic cheerleader-like person and never let anyone see me in the bad state. Well, POTS knows how to break you down at times and in the beginning of my diagnosis, I felt so alone. No one around knew what I was going through even if I explained what POTS does to me til I was blue in the face could never make them understand. I remember being in the state you are and isolated myself and laid in the kitchen floor just balling my eyes out. We all have these tough times, but eventually, we are better and some days we are not. You just have to tell yourself that this is just a bad time and to not beat yourself up over it. This place is a great place to go to and we will always be here for you. Keep fighting and and make it a goal to find ways to make yourself happy. Think outside of the box, it is so important to come up with innovative ways that keep your mental health healthy. I will say a prayer for you tonight and I am sending many Hugs & also like Katie, sending some of my spoons your way! =)

Welcome Pam! I am sorry to see you here, but also glad to see you found the right place to voice your concerns. I did not even search for doctors as I found this site and just KNEW I had pots. I called my GP And did not ask, but told them to refer me for a tilt-table test. He referred me to a cardiologist he trusted and on the first visit I told him I was 99.9% sure I had POTS. He looked me over and said that I may very well be right and we scheduled the TTT Test and after that, I was automatically diagnosed. You have to be stern, and if you keep running into ignorant doctors that blame anxiety, just move on to the next one. Don't say you assume, but tell them your are highly suspicious of this specific condition. Demand a TTT is what I would highly consider. Best of luck to you and hope to hear your results soon! -CC

A post from Jangles inspired me to share this post with all of those who may not have read his post. I wanted to just make sure anyone who is interested in trying exercise receives the link to the site... I found an awesome site for beginners in which the first week includes only stretches to prepare your body. (is targeted for children as well). The PDF's I downloaded have a calender you can print out and follow. It seems like the perfect workout for us POTS patients so I really want to share it with everyone. It brings you slowly up the scale and I think it will be very effective. It includes EVERTHING that you will need for a very beneficial and effective workout. I just found it, so I am only in the first week but I Will definitely report back on my results. I will post the site, as well as the PDF's I downlaoded below =) I think and hope that I will be highly reccommending them! Site: http://www.stewsmith.com/iframe.htm Free PDF's: http://www.stewsmith...kidsworkout.pdf http://www.stewsmith.com/45dayplan.pdf