Austin

I'm sorry folks, I didn't mention that I have confirmed Autoimmune Psoriasis. This is the reason he is going on this assumption. I am on a Beta Blocker for the high heart rate. The cardiologist didn't want to use Florinef on me as my Blood pressure holds pretty steady when standing. In fact, it does go up a little even when standing. I have never been told that it was hyperadrenergic. I have been doing tons of reading on POTS and I must say, not only is it a confusing disease to the Medical Dr.'s, but even more so to me. I have just started getting really bad Vertigo and Headaches the past few days and I don't know what to attribute this too. I have tried to take some motion sickness tablets I have hear, but they don't seem to do anything. Feels like I'm on a boat more than I'm dizzy. When I can get rid of that (it goes and comes on it's own), it seems like the headache is sitting right behind it. Thank you very much for the feedback. I have spent a great deal reading on IVIG today. From what I can see, there really arn't many side effects other than Anaphalaxis because it is considered a blood product. I don't know what to do. I have a cardiologist who only put me on a beta blocker and nothing else. I have been increasing my salt intake to no avail. If the insurance pays for the IVIG, I would go forward and be a guinea pig as this POTS has really taken away the life I had prior to it's onset. I use to be the life of the party. Now, I feel so sick all the time, I don't get out much. And if I do, I tire real real quick. It's like someone came and snatched my life away and I want it back. The IVIG won't be anytime soon I don't think as lots of hoops and ropes to get past with the insurance, but I will keep you all updated. What, if any, are alternative treatments. Other than wearing support hose, which is kinda hard for me in the summer, I don't see any other treatments out there. Please do share them with me so I can read on them and present them to my Dr.'s. Austin

He spent over an hour and a half with me. Couldn't believe the time he gave me. He has his own theory on POTS and believes it is autoimmune or infectious in nature. I guess I should restate that, as I have read that these theories in articles, but this is his only two theories. He wants me to have some special PET scan of the heart that is only done at the NIH. While he is trying to set this up, he is writing my insurance co. and trying to get approval for IVIG (Imunoglobulin). He thinks my immune system has mistakenly turned on me and by giving me this IV medication, it will fix my Autoimmune system. He told me 1/3 of patients respond to this therapy. He believes the 2/3 that don't respond perhaps have some type of infection going on that doesn't produce fevers, but all of the symptoms I presented to him. So, he said that if the IVIG doesn't work in about 3 months or so after starting it, than he would switch me to long term, high dose antibiotics. I like the aggressive and assertive nature of this Dr. I left with a feeling of hope. I just can't wait to start on this medicine. It could take a while if the Insurance co. puts up a fight. I have BC/BS, so he said that they arn't that hard to deal with. What are your thoughts on this folks ? Austin

Hello everyone... I was just diagnosed with Dysautonomia and they said I had partial POTS. My HR goes way up from sitting to standing, but my Blood pressure doesn't really change much. I did however have them stop the Isoprel infusion during the Tilt Table test as I felt like my heart was gonna jump out of my chest and got all panicky. I have been searching for almost a year now to find out what is wrong with me and things keep getting worse. I was just started on a beta blocker and my resting HR is now 80's and it goes to 110 or so when rising, but prior to this it would be like 80's and go to 160, so it looks like it's working to control the upper HR limits. More than the HR issue, I have many other symptoms and I don't know what to do as they are getting worse as time goes by. Because the Blood pressure stays stable, the Dr. decided not to give me Florienf, but did say to increase my salt intake. Again, my bigger issues are the following: Nervousness that comes out as slight tremors in my Arms and Hands. I don't care about the tremors, but it's the anxiety that makes it worse. It seems like if I strain myself using any major muscle groups, I begin to shake, but also become very anxious. I have been taking Klonopin for this, but the Nervousness feeling seems to be getting worse as of lately and I don't know what to make of it. I'm also having bad Vertigo. It's not so much the room is spinning, but I feel like I'm gonna fall out of my chair sometimes and feel like I'm on a boat much of the time. Interestingly, if I get up and walk around, this symptom seems to let up a bit. I had the chills real bad and a low body temp most of the winter, but now with the weather turning warm, it seems like I can't tolerate the heat and it's not even summer yet. I sweat just sitting outside in the shade on these warm days we've been having like there is no tomorrow. The sweat pours out of my head and my T-shirts get soaked, then I start to get the tremors. When the Vertigo finally goes away, then it turns into a headache sometimes and I've never had problems with headaches in my life. I'm a single Dad and I have an 8 year old son who is my life. I have been out on disability for the last 6 mos. and I'm scared to death that I'm going to die from all of this. My quality of life is Zero right now and I feel so bad as I can't do the things with my son that I have always dreamed of. I'm struggling financially right now because of this. My X wife is not helping either. She condemns me for not pushing myself, etc., but when I go out, the loud noises and bright lights make everything worse. I am really getting Depressed over this stuff and my Dr. put me on a few different Antidepressants, but they all seemed to aggravate everything. I have never been med sensitive in my life. I went and saw a Neurologist and he is trying to get approval to try some IVIG on me. He thinks that much of this is perhaps an autoimmune problem and that may body is attacking itself. He did some blood work to confirm this, something with IGG and IGM blood tests that I don't understand. Can anyone relate to any of this ? I have read through many posts before making my first post and it seems most of you have POTS, and although I have the tachycardia and not the BP problems, I don't know what to make of any of this, except to say I feel so alone. I hope someone can shed some light on all of this for me and I would love suggestions as to what to do with all of this. Take care everyone, Austin