Desperate Mom Posted February 7, 2009 Report Share Posted February 7, 2009 This is my first time posting on this site and was wondering if anyone else has been diagnosed with both POTS and CFS. My daughter initally got sick 3 years ago from a very bad kidney infection which led to sepsis and a 10 day hopsital stay. The infection left permanent scaring on her kidney, but according to the docs she doesn't have any problems with her kidneys. The problem is that ever since her initial hospitalization she has only continued to get worse and have so many health problems that she is pretty much bedridden. She was diagnosed with lyme disease about 2 years ago, but some docs think it may be a false positive test. She was treated for two months, but never felt better. Then she was diagnosed with epsetein bar virus and then chronic fatigue syndrome. She was just recently diagnosed with POTS about 2 months ago. She has been on Midrodrin and Altenlol, then Lyrica and Clondine. None of these drugs have helped her at all. IN fact while she was on the Midrodrin she would get excruciating headaches and the Lyrica made her gain almost 20 pounds in a month. Right now the only drug she is taking to help with the headaches is Topomax. Her bp fluctuates from very high to very low and her heart rate goes from around 90to 100 while sitting to over 135 while standing at times. She is contstantly lightheaded and the fatigue is debillitating. She has drenching night sweats and constant naseau. She takes Zofran for the naseau, but it only helps for a little while. Her doctor is currently trying to get her admitted into a hospital for at least a 30 day stay to help mainly with physical therapy because she is so deconditioned.. She also has joint hypermobility. I apoligize for all the info but any input from others would be greatly appreciated. I know most of you have been through the same nightmere as my daughter and I really don't know how anyone can function with all of this. My daughter hasn't been able to go to school in over a year and was on a home school program, but she can't even do that anymore. She's also on antipdepressants because this whole thing has become so overwhelming but they aren't helping anymore. She has no more fight left in her and I can't stand to watch this happen to her. There has to be something that can help her. And one thing that has really bothered me is the fact that for two years I tried to tell her PCP how she sick she was. Before I knew anything about orthostatic intolerance or POTS, I would notice at times how her heart rate would be so high. I asked her PCP about it and she took her BP while lying down and then again while standing, but NEVER checked her heart rate. It would have taken a few seconds to do this and maybe she could have gotten treated when this first started. She is now seeing a new doctor who has been wonderful, but we are still trying to find the right meds to help her. I forgot to mention my daughter is only 17 years old. Thank you all for reading this. Quote Link to comment Share on other sites More sharing options...
Bella127 Posted February 7, 2009 Report Share Posted February 7, 2009 I sent you a private message since I decided to write you a novel... Feel free to write back whenever you have the time!Hope to hear from you!!Chrissy Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 7, 2009 Report Share Posted February 7, 2009 Hi,I have both diagnosis. I was bedridden and in a powerchair for 7 years. I almost died twice in the hospital in 2007 and managed to get out and went to rehab for one year. I am now able to walk. My main medication is Proamatine and Procrit. Quote Link to comment Share on other sites More sharing options...
Desperate Mom Posted February 7, 2009 Author Report Share Posted February 7, 2009 Hi,I have both diagnosis. I was bedridden and in a powerchair for 7 years. I almost died twice in the hospital in 2007 and managed to get out and went to rehab for one year. I am now able to walk. My main medication is Proamatine and Procrit.ErnieWow, sounds like you have been through ****. Would you mind telling me how you got diagnosed and how things helped you while in rehab. Thank you for reading my post. Quote Link to comment Share on other sites More sharing options...
mjan Posted February 7, 2009 Report Share Posted February 7, 2009 HUGS to you both ~!! What a GREAT mom you are.. of course..doing whatever it takes to help your daughter.Just a little while ago.. I was sitting here worried..wondering if I could work tomorrow.. and the next day.. and the next. But after reading what your daughter is going through.. I feel less sorry for myself.. my HEART goes out to your daughter.Warmly Jan... I will send you a message too... Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 7, 2009 Report Share Posted February 7, 2009 Hi,I got diagnosed with my medical proof at NIH by Dr Goldstein. I could not find a competent specialist in Canada and was diagnosed with all kinds of garbage can disorders. So one day I decided that I needed to find a real specialist.In 2007 I was in the hospital for 3 months. All the doctors wanted to send me in a nursing home for the rest of my life and I refused because the medical care here is so rotton and I knew my life expectency would be around 6 months. So I pleaded to go to rehab. So they sent me to rehab and I fainted every time I stood up. The doctor did not want to rehab me because she did not want to assume the medical risk of my injuries. So I escaped at night and trained on my own. After I was stooled by my roomate the doctor gave me permission to train with an employee. But I was always the last one on the list and was only permitted to walk at around 10:00 pm when the other patients were asleep. So I escaped my room some more and the doctor gave me more freedom. They still wanted to send me in a nursing ome because I could not wash myself or go to the toilet without fainting. I told her that I wanted to go home anyway. So she accepted. It took me 9 months before being able to take a sitting shower. A year after I lef the hospital I was well enough to go to rehab twice a week.They made a special program for my needs and it helped me improve some more. I just joined a group of elderly people where I train once a week. I know I am much younger then them but it feels good to be able to do something that other people can do. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted February 7, 2009 Report Share Posted February 7, 2009 I am so sorry to hear about your daughter. It must be so painful for you to watch as well. My daughter is only 2 and I think about how as much as I hate that this is happening to me, if it were happening to my daughter I wouldn't be able to stand it. The most important step is getting in w/ a doc who understands and is going to spend time with you. Because unfortunately most of the treatment is trial & error. The drugs your daughter tried didn't work - but there are others to try. I also have been diagnosed w/ CFS/FM. Just recently, actually. It makes so much sense to me b/c the fatigue is debilitating, as you say. It sounds like your doc is on the right track as far as getting her somewhere for an extended stay - it's going to take a lot of time and patience.I'm sorry I don't have any answers for you but hang in there - you are a great mom for caring so much. Quote Link to comment Share on other sites More sharing options...
Desperate Mom Posted February 8, 2009 Author Report Share Posted February 8, 2009 Just want to say thank you for everyone who responded to my post and for giving me such good advise. It really does make me feel better to know that there are kind and compassionate people here who really do understand. I will take everyone's input and do some more research. There is so much more to learn. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted February 8, 2009 Report Share Posted February 8, 2009 I just wanted to also add - has your daughter check out dynakids.org? If not, it might be good for her to look into. Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 8, 2009 Report Share Posted February 8, 2009 Hello and welcome to DINET. This is a great place to come for information and support. Your daughter is welcome to join us on here too.I was diagnosed at the age of 15 (though symptoms started before that), so I know what it is like to be in highschool with POTS. There were times when I'd miss a month of school. I just did extra work on the days I was feeling better.Many people get better with treatment, but some of us do not. I am one who has had very minimal benefit from treatments and meds. Over time I've learned how to pace myself to keep flare ups to a minimum. I've learned how to do activities differently. Simple helps like shower stools, walklers, canes, and wheelchairs can help with making daily life a bit easier.If your daughter has never been to an autonomic specialist, this may be beneficial for her. Again, welcome! If you have any questions as you face this new and daunting journey, feel free to ask away here. Rachel Quote Link to comment Share on other sites More sharing options...
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