Melanie

Hi, I haven't been around for awhile. I first began when I thought my symptoms sounded like POTS. Now I have Dx of Orthostatic Intolerance (don't know if that's the same) among too many others too . Anyway, I'm 41 and have lived with POTS like symptoms since 14. I never began receiving help for of of these things other thatn the tachycardia until this last year. So, keep hope, I went untreated from age 14 to age 27. And have been on Atenolol since age 27 until last week. Did have a 3 month period off for diagnostic purposes and they said it had become (instead of SVT) Inappropriate Tachycardia, severe (anytime, anywhere, most of the time). So, in preparation for eval next week at Vanderbilt, I have worked down to zero Atenolo a day. More specifically, though, I've gotten down to that but need to take 25 mg Atenolol/tenormin if I've done too much activity and am exhausted or if I was tense for too long (like anaerobic exercise). Sometimes the tachy doesn't even set in until that evening. That's when I will take some med for it. Atenolol has helped me for 14 years now. I'm very excited to get to the point where I might not need it everyday. Although, too, I have been on a sort of sick leave for a year and a half and my stress level has gone below what it has ever been and I am so tired I hardly do anything. So these things have probably helped. But know there were years where I needed 100 mg/day to get through. And you have to get your sleep or it makes you more exhausted and prone to heart arrythmias. So try the meds, even ask your doctor if he doesn't offer. Good luck! Melanie Aye! My point was that the atenolol helped me sleep because it calmed the pounding (and yes, sometimes I had that awful pounding so bad others could see my back bouncing from the chair back). I've survived many years now, many totally untreated, most undiagnosed; though I do not recommend that! I was young and dumb! Hang in there and do not be afraid to ask your docotors for help. Sometimes I find it helps to ask a doctor, "If I was your sister, (son, daughter, whatever), what would you want for me?" Treat yourself that way too! (easier said than done I know - but it helps to remind ourselves - "If this was my son, what would I be doing for him?" That way I also have a better idea of what kind of help I need to seek (also a long time climbing that barrier!). I'm not saying I'm on Easy Street now - far from it - but the heart condition can be managed - by a cardiologist. I'd like to hear more what others have experienced about these things. Melanie

Hi Buddy Lee's Wife, I'm so sorry to hear you're in the same boat. thanks for sharing what you had come across. Is you husband diabetic? If you haven't already, you might want to look up vaso vagal syncope. I wish you and Buddy and his twin a Happy valentine's Day and renewed health - and answers! Keep loving, you'll find answers :-) Melanie

Hi Buddy Lee's Wife, Thank you so much for your concern. I have been reading for >1 year now about Diabetic Autonomic Neuropathy (DAN). Maybe I am in denial. But there are 2 facts that make me question that diagnosis: 1. as the article said, one usually has diabetes for a long while before developing DAN symptoms (that would place me at about age 9 with Type 2 diabetes, which was never found in years of blood tests, though no one ever did the multi hour test with me until 2 years ago, so maybe it's possible?); and 2. It is often said that the eyes are the first to have symptoms, but that has not been the case with me. everything else first. And with my 12 year old having fainting spells (none in the last year, thank God!), low blood sugar; I think this sounds more like there has been POTS all along and no one ever picked up on it. This is so hard. Do you think this does not sound like POTS? Can you tell me why? I was reading last night that there is a very large overlap with those who have POTS also having Chronic fatigue Syndrome. That seemed to describe my present and account for my past pretty well; but like I said, maybe I am in denial. Well, thank you very much for your thoughts. Melanie

I don't know what to say. I've been telling my doctors since they told me I have Diabetic Autonomic Neuropathy that it just doesn't make sense. I have had hypoglycemic incidents and heart arrythmia (SVT, now inapproprite tach) since I was 14 and I'm 41 now, diagnosed with diabetes 2 years ago! I haven't been able to find anything that had the 2 together and here are all of you have had experiences just like me! I could just cry. I have so many questions, but I'm new to your site tonight. So I will have to explore and learn lots! I would be so glad of encouragement and suggestions! None of my doctors understand dysautonomia (including my cardio). Started with a new cardio last month who suggested POTS or chiariX (sp?), so I'm still new with this info (could tell you almost anything about D.A.N.!). Here I feel like I have come home. I have just applied for Social Security Disability benefits; but most of all, my concerns lie with my 12 year old son who is showing the same symptoms I had near that age. I feel like I'm dieing (thought I was wih the Diabetic A.N. diagnosis) and do not want him to have to go through all this! Thanks! Thank God for all of you and this forum! (I'm sorry to gush and I am not a religious fanatic - I am just overwhelmed with finding your forum and the timing of finding this most unexpected connection that explains so much!! Like I said, words just cannot fit my emotions right now.) Melanie