RobinB Posted January 18, 2016 Report Share Posted January 18, 2016 Hi Everyone,I just want to introduce myself. My name is Robin and I live in Illinois. I have been sick for about 5 years and was just diagnosed with POTS on Christmas Eve 2015. My diagnosis came from a local cardiologist. Prior to that I had been shuffled from dr to dr and mostly told this was anxiety. Of course I knew it wasn't but tried hard to believe it. I tried therapy and meds for it which didn't help.I'm hoping to learn from other members about what I can do to manage my condition. I feel that I have gotten much worse since the diagnosis, but there could be some anxiety involved in that. Knowing what I have at first gave me relief but after researching it I feel scared and hopeless about my future.I have a 5 year old son who needs me and I feel like I can't be the mom I need to be for him. The cardiologist who diagnosed me did not offer any insight as to what might be causing this. She just advised me to drink more water and eat more salt. And to get exercise. I hadn't been exercising at all because everytime I did I felt I might die. I just joined a gym and I have been working out a few times a week on the recumbent bike. Afterwards I feel very symptomatic, but it does help me sleep better I suppose.I'm wondering if anyone knows a good dr for dysautonomia in the Chicago area? I would really like to see if I can find someone to search for an underlying cause. I'm not opposed to traveling out of state, but I would prefer to start closer to home if possible.I appreciate any advice anyone can offer me. Stay strong everyone!Robin Quote Link to comment Share on other sites More sharing options...
statesof Posted January 18, 2016 Report Share Posted January 18, 2016 Hi Robin welcome to the forum I am from the Chicago area as well; there are a few doctors I've been to who are pretty knowledgable about POTS, there is Dr. Barboi who used to be at Rush but I believe he is now at Northwest Community or something like that, he is a neurologist. Then there is Dr. Janice Gilden she is an internal medicince doctor but has seen many POTS patients; the first day visit with her is a long one fill with many tests. In my personal experience she was more thorough than Barboi, but there are others on the forum who received help from each of them. Here is a link to the physicians list which you can look up doctors by state: http://www.dinet.org/index.php/physician-list Quote Link to comment Share on other sites More sharing options...
RobinB Posted January 18, 2016 Author Report Share Posted January 18, 2016 statesof: Thank you so much for that! I did find Dr. Gilden on that list and I googled her and it seems she has pretty good reviews. My main issue right now is accepting this whole POTS thing without having a cause. They did prescribe me a beta blocker. I haven't taken it because I am extremely sensitive to meds and I asked her to help me find my cause before we try meds. The cardiologist I saw basically said there is no cause this just happens to some people and it will probably last for life. I'm going to see if I can get an appointment with Dr. Gilden! May ask how your experience was with her? I tend to shut down when I feel like they aren't listening to me. I also have difficulty with emotions. Suffering for so long...I have recently been crying in my dr appointments just from the stress of it all. They kind of look at me sideways when that happens.Thank you for your reply!Robin Quote Link to comment Share on other sites More sharing options...
lewis Posted January 18, 2016 Report Share Posted January 18, 2016 Your story brings back memories. When the doctor told me to excersize I said, what!? I can barely do anything let alone go excersize! I have been through just about every test that is out there and still no answers. However I have gotten most of my life back with the help of beta blockers and excersize. I take salt pills and lots of water before excersize (mostly weight lifting) and I kind now lift more weights than I could before I got sick. I don't feel I have the same endurance however. I was very apprehensive about taking the beta blockers as well because I'm very sensitive to medication but they sure did help me. I take propranolol. Also gluten bothers me as well as any fortified food and chemically made vitamins. I hope you can get stronger in the mean time of finding a cause. Quote Link to comment Share on other sites More sharing options...
RobinB Posted January 18, 2016 Author Report Share Posted January 18, 2016 Hi lewis! Thank you for your reply. I'm glad to hear the beta blockers helped you. I know I should try them. I have increased the amount of water I drink and I sometimes drink gatorade. The other day I tried a powerade drink that contains B vitamins and it was like the fog lifted and I could think again. That only lasted a few hours though. I just called Dr. Gilden's office and they are closed today so I will try again tomorrow. It sounds like you have made great progress since coming down with POTS. I feel the same way you did. It's like I can barely fix myself a sandwich. When you say you don't have answers do you mean they haven't found a cause for yours?Robin Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted January 18, 2016 Report Share Posted January 18, 2016 Welcome to the forum! I hope you find it as helpful as I have. Sounds like you are on the right track with the increased fluids and salt as well as exercise. Take it from someone who has gotten severely deconditioned, exercise is important if at all possible. Decondioning compounds the problems with POTS/dysautonomia. Make sure you are taking in fluids and electrolytes when you are exercising, helps me be less symptomatic following exercise. Hope things work out for you and you find just the right dr. Quote Link to comment Share on other sites More sharing options...
RobinB Posted January 18, 2016 Author Report Share Posted January 18, 2016 Thank you ANCY. I agree I think I made my condition worse by being sedentary all these years. But how could I know?! I just knew I felt better when I was seated or laying down. I'm just waiting for the day I could even feel like 50% of my former self. I wish you well.Robin Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted January 18, 2016 Report Share Posted January 18, 2016 Thank you, made the same mistake... when I got sick I stopped moving because I didn't know what was going on and no dr could tell me. It definitely impacted my health negatively, hopefully for you it will not be as severe. Wishing you all the best. Quote Link to comment Share on other sites More sharing options...
lewis Posted January 18, 2016 Report Share Posted January 18, 2016 Hi lewis! Thank you for your reply. I'm glad to hear the beta blockers helped you. I know I should try them. I have increased the amount of water I drink and I sometimes drink gatorade. The other day I tried a powerade drink that contains B vitamins and it was like the fog lifted and I could think again. That only lasted a few hours though. I just called Dr. Gilden's office and they are closed today so I will try again tomorrow. It sounds like you have made great progress since coming down with POTS. I feel the same way you did. It's like I can barely fix myself a sandwich. When you say you don't have answers do you mean they haven't found a cause for yours?RobinYa they weren't able to find a cause which is pretty typical so I am focusing on managing it. I'm glad I didn't wait to work on managing it because it's been a long road to get where I am. I was also like ancy and had quit exercising not knowing what was going on. I had a much better quality of life before I got sick but I definitely am better than when I was at my worst. I was apprehensive about the beta blocker and I ever started with a lower dose than the doctor recommended due being nervous about it but it was the start to the road back to having strength. Quote Link to comment Share on other sites More sharing options...
statesof Posted January 19, 2016 Report Share Posted January 19, 2016 Hey Robin, my experience with doctor Gilden was pretty good, it just got to a point where she wasn't really able to help me with my symptoms, though prior to my major POTS stuff I already had 4 years of dealing with migraine and depersonalization disorder, and random symptoms that weren't characterized by either, so in my case I felt I really needed a neurologist since that tends to be where all my symptoms stem from (I haven't yet found a doctor who has been able to really help me in a significant way).What I liked was how thorough Dr. Gilden was though, the whole first appointment is a day long like literally 7am - 7pm for me, lots of blood tests, ekg laying and standing, and then she kind of inventories your symptoms. It was the best experience I had outside of Mayo Clinic as far as thoroughness, so I felt it was worth it even to just rule other things out. Quote Link to comment Share on other sites More sharing options...
RobinB Posted January 19, 2016 Author Report Share Posted January 19, 2016 Hey Robin, my experience with doctor Gilden was pretty good, it just got to a point where she wasn't really able to help me with my symptoms, though prior to my major POTS stuff I already had 4 years of dealing with migraine and depersonalization disorder, and random symptoms that weren't characterized by either, so in my case I felt I really needed a neurologist since that tends to be where all my symptoms stem from (I haven't yet found a doctor who has been able to really help me in a significant way).What I liked was how thorough Dr. Gilden was though, the whole first appointment is a day long like literally 7am - 7pm for me, lots of blood tests, ekg laying and standing, and then she kind of inventories your symptoms. It was the best experience I had outside of Mayo Clinic as far as thoroughness, so I felt it was worth it even to just rule other things out.Exactly! That's what I'm really looking for at this point. Of course I have had tons of blood tests, MRIs, Echos etc. done over the years with almost everything being normal, but that was pre-diagnosis. Now that I have been diagnosed I feel like I need to at least give a shot to finding a cause. I'm interested in her because I've read on here and other places that she investigates more than other doctors. Unfortunately I have called her office rtwice this morning and nobody has picked up. I left a voicemail and I'm hoping they will call back. I also requested an appointment with Dr. Barboi so I'll see which one gets back to me first. This is all just so overwhelming and I'm sorry to say I am letting it get the best of me. I really appreciate the time you took to answer my questions. Thank you so much! Quote Link to comment Share on other sites More sharing options...
RobinB Posted January 20, 2016 Author Report Share Posted January 20, 2016 In case anyone reads this I was able to get my appointment with Dr. Gilden on 2/16! I'm really hoping she can help me. Is there anything in particular I should ask to be tested for? I was informed she would spend most of the day with me performing blood tests etc so I'm thinking she will cover all the bases. If anyone has any advice I would appreciate it.Robin Quote Link to comment Share on other sites More sharing options...
statesof Posted January 20, 2016 Report Share Posted January 20, 2016 I think all the tests she does that first day are pretty extensive in and of themselves, if the results show any abnormalities I'm sure there will be more investigation; I know in my case I had to do a week long blood sugar testing to see if there were any correlation with my symptoms. Quote Link to comment Share on other sites More sharing options...
Rose11 Posted February 18, 2016 Report Share Posted February 18, 2016 Robin,I would like to know how your appointment with Dr. Gilden went this week.Hope it went well. Quote Link to comment Share on other sites More sharing options...
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