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

Jangle, I have seen so many testimonials on numerous sites on the benefits of exercise for POTS patients and I am surely going to get me a regimine going. 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. 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.stewsmithptclub.com/parentkidsworkout.pdf http://www.stewsmith.com/45dayplan.pdf

I used to tan a long time ago but haven't recently. Just wanted to add a helpful tip on top of the fans. When I would get too hot as fans were not effective enough, I would just step out for a minute or so. Bringing wet wipes with you could help cool off your face and neck as well. =)

Ohh Brenda, I just wanna give you a big fat hug! You poor dear, your daughter is so lucky to have such a caring mother. I am sure you are her lifeline. My mother says to me all the time when hugging me, "If mama could take it all away or give it to myself instead, I would." It just shows how much she cares and how she doesn't like to see her 22-year old baby suffering one bit. This is the perfect place to vent, and I say do it every single time that you need to. Writing out your frustrations really does help. I keep a journal and write down anything and everything I am feeling and it helps SO much. I don't know why, but it is so effective to my mental health. Your daughter may have this tough illness, but always remember to keep your health in check too. If your anger gets too bad and talking it out with your husband or keeping a journal doesn't help, don't be afraid or embarrassed to talk to a professional; that is what they are for. You struggle as well and it is important to make sure you are okay too. Also, I seen you asked about Restless Leg syndrome. I was diagnosed with this as well on top of chronic headaches with migraines and tremors. My neuro put me on a medicine called Gabapentin and he said it helps with ALL of those things. So far, all have been less present besides the tremors. It took a few weeks for it to be effective, but so far it has decreased my amount of headaches and the restlessness in my legs. So that is another option to consider as well. Never feel bad or uneasy about having a pity party here, as we are all here for you! =) I will say a prayer tonight for you and your daughter and I send my best wishes and blessings your way. BIG HUGS to you both. =)

I also had an MRI as I have chronic headaches, tremors, and visual disturbances. However, I do not have visual disturbances to the extent that your daughter is having and yes, I bet that is scary! I would get as many tests as you could done that would help pinpoint any potential problems but my MRI came out normal. With all the symptoms I experience I just have a hard time believing it! lol .. My heart goes out to you & your daughter. I hope you find a piece of mind soon! Big Hugs!

Kimellgirl - I am going to start an exercise regimine and really hope I see an improvement, it seems to be a popular suggestion among POTS patients. I am hoping to get the sleep study very soon as well. Martiz- I agree, the last thing I would want to resort to is stimulants. I do get a lot of carbs, but that does not seem to help. I think I may start a gluten-free diet to see if that may help. Oh, & my thyroid has been checked and they said everything was fine. Brenda- You are so sweet =} Thank you for your kindness. I am 22 =) I had a thyroid test at the hospital, but I am not sure how thoroughly they checked it but they said it was fine. I do have chronic constipation and was diagnosed with IBS. I have just about every symptom you can think of but the fatigue is what frustrates me the most. I am going to do everything I can to improve it and plan to start an exercise regimine, sleep study, gluten-free diet, and possibly supplements. My heart also goes out to you and your daughter & I send my blessings your way. Big BIG hugs to you both =)

Thank you all to those who responded, you are all so very great and I appreciate my Potsy family to pieces! I wish there was a way to just cure all of our fatigue because it seems to affect all of us so much. Thankful – I may look into seeing the options of whether there is another beta blocker that has been known to cause less fatigue. I just know the fatigue was there before the beta blocker and am not sure if changing the beta blocker would do any good. =/ & thank you for listing other medications that have helped others with fatigue. I will definitely look into them and see if any might be beneficial to me. Hilbiligirl – How I want to grab you and hug you til your pain goes away! I know exactly that feeling you have, & how frustrating it is that you can’t describe something so severe! The way you described it to me made Perfect sense though! It is great to have people here who understand so never feel guilty of having a pity party! We are here to listen and do as much for you as we possibly can. I know some days are hard and life just seems unfair and this condition seems like a sick joke, but you are strong, and you can handle this. Copy what you wrote to me and bring it to your doctors. Ask them for any advice they can give to you on any ways of settling this tantalizing condition and symptoms. I need to follow my own advice here as well. I know feeling lost is hard and beyond saddening, but when you look at how strong you are and how far you’ve come, it doesn’t seem so bad. BIG HUGS to you sweetheart! Mary – That is exactly what I hope to do, is to either find a great doctor or to educate one so well that I actually create a great doctor! =) Thank you for your wishes, you are so sweet! Big Hugs and wellness to you! Fiona- It is great to hear that you have managed to come up with a process that works great for you. You seem to have a more severe case of fatigue and my heart goes out to you! I am so happy to see that you put your health first and have your priorities straight in order to live your life to the fullest possible. Kudos to you! Hugs! =) We-don’t-look-sick – Could you educate me a little bit more on NADH and Ribose? Do you have some links you could share or specific products for recommendation? Thanks a bunch! =)

All that numbness due to headaches? I would maybe look into getting a different opinion on that matter. I may not have doctors who are fully aware of my condition, but my neurologists has ran all types of tests on me due to my numbness to rule anything and everything out. I have chronic headaches and migraines and my neuro not once thought it caused any of my tremors, numbness, or tingling. As far as hair thinning or falling out, I have always had A LOT of hair and although I see no visible thinning, I have noticed for quite some time that A lot more of it falls out during and after a shower. As far as a specific area, no I have not seen any of that. I have heard of some other Pots patients saying their hair falls out more but I have not came across any extended studies on this particular matter (of course not, because there's little studies done for Pots). So this is just my input and experience with this matter, I hope you find some more answers! =)

I already know as soon as you POTsies read this post your head started spinning right away! lol Well what I did was went to the DINET symptoms list, copied, pasted, and tweaked accordingly. The symptoms in bold are my most worst symptoms or just symptoms I deal with most. Side-notes are applied as well. Big Hugs! Lightheadedness Generalized weakness Palpitations Tremulousness Shortness of breath (occasionally) Chest discomfort and/or pain Diagnosed with IBS-C (Chronic constipation) and I blame POTS. Bloating Nausea (occasionally but more often lately) Abdominal pain EXTREME Fatigue Headache/migraine (chronic/daily) Dizziness Tachycardia Exercise intolerance (depends on the day) Clamminess (Had pallor very bad until I went on beta-blockers) Anxiety Blood pooling in limbs Intolerance to heat Feeling cold all over Cognitive impairment (includes difficulties with concentration, brain fog, memory and/or word recall) Cold hands, feet, and nose Chills Numbness or tingling sensations Low back pain Aching neck and shoulders Noise sensitivity (can have TV on very low and hear it clearly, complain of others having TV too loud all the time). Disequilibrium Arrhythmias (irregular heart beats) Feeling full quickly Loss of appetite Loss of sex drive (sometimes) Muscle aches and/or joint pains Swollen nodules/lymph nodes Polydipsia (excessive thirst) Restless leg syndrome Night sweats (has gotten worse lately) And then my own additions: Unable to stand in one place for long without getting sick and bloated; have eventually almost fainted once because of this when I was fighting against my symptoms at a concert. Was at the front of the stage and started rushing and pushing to get out of the crowd, my vision became pitch white and I thought I wasn't going to make it until a medic seen me struggling. This has happened only once, because I most certainly learned from that experience. (VERY SCARY!) Blurred vision Oh and I am sure there is more. And this my dears, is why explaining our condition is so hard and why it is understandably, extremely difficult for those around us to understand and relate to what we go through. It just does not seem fair, but life's not fair right? We're fighters and that's why God knew we could handle it. Big hugs to you all & I hope you are all doing well!

Katybug, I really enjoyed your creative response and thank you for the tips! =) Linj - You have voiced my same very frustrations. I am 22, will be 23 in August and this all started when I was around 18-20. So needless to say, I know Exactly how you feel and the overwhelming guilt, frustration, hurt, and anxiety that builds up while we are down is a horrible place to be. I am also still dealing with this, but as Katybug said, this is the time in which you will see who your true friends are. The best thing we can do is continuously educate those around us on our condition until we are blue in the face. I have found this difficult to do, but practice makes perfect. I created an album on my facebook page filled with expressive and self-explanatory pictures along with links to informative websites, including the infamous spoon theory. Print out several copies of articles, such as the spoon theory, and carry them around with you to hand out to those who need to learn and that are willing to listen. Our condition is a lonely one, but we must fight through and be our own advocates. We are the voices that can make POTS more known and ultimately, the ones who will lead to a cure. And always know, we are your family here and will be always be there for you. =)

This was an interesting poll that I was looking forward to reading the responses. I have heard that gatorade can help POTS patients but am unsure as to why and how much they could help? I have drank some, but not enough to notice any benefits to them. Anyone have any sources on the benefits of drinking gatorade for POTS patients?