UtahApoc Posted March 4, 2009 Report Share Posted March 4, 2009 Hello All, I just joined but was first diagnosed with Idiopathic Hypovolemia seven years ago. After being diagnosed it took me a good 2-3 years to recover to a functioning life. Currently I am attending college and hoping to do many good things. Last weekend though the dreaded happened.....Relapse. First thought it was just a quick spell since I still get them now and then. Unfortunately; Rest, Liquids, and Lying down failed to work. After the second day I decided to visit the Er to verify it was not some other virus, or illness. All the tests came back fine, and it appeared to be my dysautonomia. The Dr. decided to give me a orthostatic blood pressure check after getting an IV of fluids. The Lying, and sitting were not that bad. Then it was time to stand, a minute in and I knew I was not going to make it. I had the nurse start the BP cuff. Soon as it was inflated I had to sit; more than I could take. After crashing down onto the bed the BP finally came up as 69/57. This is not my worst, but one of; also has been ages since a crash this hard. Anyways, its now the sixth day. Seems that im not recovering at all. I have missed the week of school. I can't even shower. I hope that this will still pass. I am losing hope again though. The one advantage so far was finding this forum, and getting registered. Having people that understand can be such a benefit. I look forward to talking to you all. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 4, 2009 Report Share Posted March 4, 2009 Welcome! I am sorry about your crash, but you seem extremely lucky to actually have a doctor who knows what is going on! Has something changed in the recent past that would trigger this: stress, illness, etc.? Can they not give you a couple bags of saline to "tide you over?" Strength and healing! (and fluid retention, of course! ) Quote Link to comment Share on other sites More sharing options...
all4family Posted March 4, 2009 Report Share Posted March 4, 2009 Hi UtahApoc,welcome! But sorry for what you are going through that brought you here. I have to say I don't know what idiopathic hypovolemia is. Maybe you could explain? Is it the same as saying POTS? I am so sorry that you are having a relapse. I know how frustrating that is to be doing well, then have the familiar symptoms return. It's like you want to hurry up and do anything you can to stop it. Please don't lose hope. You got a lot of good things in your life to be hopeful for. I know how it feels not to be able to shower. I have just gotten to the point I don't even try showering in a standing position. I sit on the floor of the shower, and use a detachable showerhead. But when I am really sick even this is to hard. I hope that this is just a short thing for you, and you are feeling better in no time. Take care, and don't be discouraged. Your not alone out there.Healing HugsSuzy Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 4, 2009 Report Share Posted March 4, 2009 Hi UtahApoc,So sorry to hear about your recent relapse. Sounds like you were doing so well! It really stinks to have to lay down all the time. A lot of folks with dysautonomia have "flares" and have worse symptoms for a period of time. It's scary while your feeling so badly, though, because all you know is how badly you feel right now. I'm glad you have an understanding doctor. Can he do anything else for you? I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
UtahApoc Posted March 4, 2009 Author Report Share Posted March 4, 2009 Thanks All for the quick replies. A few questions were asked: First, Idiopathic Hypovolemia is a Form of POTS (My understanding) As to the Dr., I don't have one. I just have learned a lot and pass that along to the ER when I was there. If this relapse continues I will be getting a DR again and starting more treatment. Guess I was lucky the last 3 years. When at the ER the other night i got 2 bags, without any real relief. If im still down tomorrow I am supposed to return and then get more treatment, and set up with a DR. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 5, 2009 Report Share Posted March 5, 2009 Welcome to the forum family.I am sorry you are in a relapse. We fondly call it the potshole. You may visit there from time to time but you WILL rise up out of it! These dysautonomic syndromes will drain you but eventually, your body gets back into a groove and you will be mobile again.So, how to deal with where you are for now...Stay hydrated using some salt or electrolytes to help you retain the water/ soup you take in. Try to just do a leg lift or a few as you are able.Try to do some things while you get your strength back like a hobby or listen to music or write or read...as you are able. Take time to look into the archives here and learn from others. You will learn so much to help yourself this way! Just don't let yourself feel alone because you are not. You are only a keystroke away from many here who understand.Please take these thoughts of mine that I have hung on the walls of the potshole I visit during a relapse and think about them..."No hope is NOT an option!""You cannot control what happens to you, you can only control how you respond."I am hoping today you feel a bit stronger and that you will get to the doctor for help if you need another IV.best regards,tearose Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 5, 2009 Report Share Posted March 5, 2009 Hello and Welcome to DINET. I think you'll find lots of help, information, and support here. This is a great place to be, though I'm sorry you have a need to be here.I'm sorry to hear that you've hit a relapse/potshole. I hope that you are able to recover soon, and that you can find a doctor to help you find a good treatment plan. Rachel Quote Link to comment Share on other sites More sharing options...
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