heissovereign Posted February 28, 2012 Report Share Posted February 28, 2012 Ok so, after my episode last night I am still in icu stepdown for monitoring. My neuro and cardio and EP said this is a very severe case, my neuropathy has progressed over night to where now I get vibrations and complete numbness from my forehead down to my chest and arms and fingers they are keeping me on neurontin (sp), which temporarily helps. They are monitoring me due to the fast progression. When I get out my neuro is doing nerve conduction test and skin biopsy. Then getting me to vandy. I'm relieved but scared because its progressing so fast, my vessels in my face are busted as well with no explanation. Its scary my voice gets slurred because of the numbness in my throat, they reviewed all my files and believe I was born with this. Any one know from a genetic perspective about this illness? Quote Link to comment Share on other sites More sharing options...
jangle Posted February 28, 2012 Report Share Posted February 28, 2012 Heiss hang in there ole' lady. That situation seems very scary, and im sure the icu isn't exactly a warm environment. On the plus side you're feeling things probably no one else will ever experience. . Being described as a "very severe case" is no doubt very scary but I suspect that it's as much just not knowing what is going as it is the severity of the symptoms. I hope these new specialists they refer you to will have a greater understanding of what to do to get you out of this predicament and nurse you back to health.Sending healing vibes your way. Stay strong! And don't forget to smile sometimes! I suspect icu is deficient in smiles. Quote Link to comment Share on other sites More sharing options...
puppylove Posted February 28, 2012 Report Share Posted February 28, 2012 Oh my gosh, that sounds so scary. Keep us updated. I'm sending good thoughts your way. Quote Link to comment Share on other sites More sharing options...
roxie Posted February 28, 2012 Report Share Posted February 28, 2012 Praying for ya Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 28, 2012 Author Report Share Posted February 28, 2012 Thank you for your encouragement, it is scary but one of my nurses comes in and researches with me , they are all nice and trying to help, they don't understand but is awesome that she comes in when she has a break with her ipad to research with me. Lol I hate being the sick person on display, but at least they are taking me serious now... I have been dealing with this my whole life and finally have help even my family is supporting me now. I hate it though my babies are in two different places and I haven't seen them since last nite. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted February 28, 2012 Report Share Posted February 28, 2012 Just some words of wisdom that I got from my GI when I was going through the diagnosis period and scared to death because of all the scary possibilities that I had read on the internet that somewhat correlated with my symptoms. He told me that the internet was great for research after a diagnosis has been made by a doctor, but a patient should never research their symptoms so as to make their own diagnosis. He's right, of course, the possibilities will only scare you. I ended up having gastroparesis and small bowl dysmobility, but I had convinced myself through self diagnosis that I had stomach cancer and scleradoma. Of course, once I developed symptoms of dysautomonia, his words of caution didn't stop me from researching the cause of my symptoms!You will be in good hands at Vandy. I was diagnosed with POTS at Vandy and I was impressed at how thorough and extensive their evaluation process was. I know how scared you must be at this time, but you are going to one of the best hospitals in the nation and you will get excellent care. We'll all be thinking of you and praying for a speedy recovery. Please keep us posted! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 28, 2012 Report Share Posted February 28, 2012 It's ridiculous that it had to get to this point before someone would truly listen, but I think this is often the case. I've often thought maybe it needs to get worse before it can get better. There are more symptoms and clues to go on now, so maybe they'll be able to figure it out. I think you'll be in good hands at Vandy - hoping they will get to the bottom of this for you! Keep us posted. ((hugs)) Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 28, 2012 Author Report Share Posted February 28, 2012 Thank you, my sodium and potassium are off so they said I'm here at least until tomorrow he moved me up to 0.6mg of florinef he said with my instability with blood pressure and hr he isn't sure on trying midodrine or anything and leaving that up to vandy. I did have a doc I used to see recommend a pacer for the bradycardia it was mid thirtys last nite. Jangle, and rama you seem to know some about vandy do they recommend pacer for bradycardia like mine? And those of u that have one do they help. And anyone in my age range have one? Quote Link to comment Share on other sites More sharing options...
Brye Posted February 28, 2012 Report Share Posted February 28, 2012 I just had a pacemaker put in less than 2 weeks ago for my bradycardia. Too early to tell if it's going to help. Still recovering from the surgery. I had put that one off for years while I tried to get back in shape/adjusted meds. Nothing seemed to speed it up and I couldn't back off my atenolol and still function.Brye Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 28, 2012 Report Share Posted February 28, 2012 My daughter also has broken blood vessels on one side of her face. It ends up pooling and becomes more purple and spidery looking over time. She has had laser surgery twice to remove them, the first time she was in the 7th grade. After each surgery, they were completely gone. Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 28, 2012 Report Share Posted February 28, 2012 Honey, how did I miss this? WHAT was your episode? Salt & potassium being off could EVEN cause your current symptoms. I have been very worried about the high dose of florinef that you have been taking. THAT can even cause the salt & potassium to be off. You and I chatted about this before you ended up in the hospital... Remember the suggestions via Dr. Rowe's brochure about supplementing with extra salt & potassium? When my son and I have been very sick (like you are) I have done my own research (really had to as our local doctors were at a loss) and always found answers that have led us to the right doctors and treatments. You are blessed to be able to do that in the hospital and to have such caring nurses helping you. Please Know that I am praying for you to find the answers you need.Gentle Hugs-Julie Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 28, 2012 Report Share Posted February 28, 2012 You KNOW that I'm not a doctor. I don't even play one on TV I'm just a Mama, whose had a very sick boy, like you are and I care about you.PLEASE talk with your doctor about such HIGH doses of florinef. It can be very helpful at low doses, but it can actually have a paradoxical effect at high doses like you are taking. In other words, I worry that it may be what is making you sickhttp://home.intekom....b/florinef.html"Small oral doses of fludrocortisone acetate produce marked sodium retention and increased urinary potassium excretion. Fludrocortisone acetate also causes a rise in blood pressure, apparently because of these effects on electrolyte levels. In larger doses, the steroid inhibits endogenous adrenal cortical secretion, thymic activity, and pituitary corticotrophin secretion; promotes the deposition of liver glycogen; and, unless protein intake is adequate, induces negative nitrogen balance."At the very least, show this to one of the nurses that are trying to help you just to check IF the high doses of florinef could be causing your symptoms. From everything you have shared, it sounds like you have been very sick, but "stable-ish" your whole life. It wasn't till you started the high doses of florinef that this crisis occurred- right?Once again, forgive my meddling- I'm just worried Healing Hugs-Julie Quote Link to comment Share on other sites More sharing options...
roxie Posted February 28, 2012 Report Share Posted February 28, 2012 Yeah, please show your dr. I too thought it was wierd he upped the florinef, but I also thought what do it know?Ive been on florinef for like 13 years. And one time I had my potassium drop real low. I don't remember what happen but it was a bad episode, i know my body felt like lead, and my mom called the ambulance. In the ER they kept saying florinef couldn't cause low potassium, that I was bulimic. Finally after a fight they gave me IV potassium & I did get better. I just don't understand why dr's ignore the florinef- potassium thing. Low potassium is dangerousContinued prayers Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 29, 2012 Author Report Share Posted February 29, 2012 Thank you mrs julie and I hate bananas. My potassium was ok until I got a stomach bug. He told me about the potassium depletion and is going to put me on a high dose supplement and depending on my salts he may put me on 1gram salt tablet three times a day but thinks I may not need the salt tabs. He is going to have me scheduled for follow up visits for lab to check my electrolytes. And my bp hasn't spiked since Sunday nite and I think most of it was from the dehydration from the vomiting. I thank you for your concern but for once my doc is listening, explaining and doing all he can. And I'm feeling good today just sleepy. Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 29, 2012 Report Share Posted February 29, 2012 So happy you are feeling good and finally have a doctor who will listen I worry that it might NOT have been a stomach bug- but rather the hypertensive crisis that caused the vomiting & broken blood vessels on your face. The way I am understanding it, at high doses florinef can cause a serious depression of your body's cortisol and can cause LOW blood pressure & a host of other problems. Maybe consider sharing that idea with your nurses or doctor and see if it has any merit. Let THEM decide. I just want you to be safe. PRAYERS & Hugs coming your way-Julie Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 29, 2012 Report Share Posted February 29, 2012 I'm so sorry about what you are going through right now. I will be praying for you tonight.I'm not a doctor, but I would be very concerned about taking 0.6mg of florinef. From what I understand 0.2 is the max dose. http://www.rxlist.com/florinef-drug/indications-dosage.htmI hope you'll be feeling better soon.Hugs,Rachel Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 29, 2012 Report Share Posted February 29, 2012 My goodness...glad you are going to Vandy. Very good Medical Center. You should definitely find out some answers there. Praying for you!! Low potassium is nothing to fool around with. It could stop your heart from beating. Glad you had caring nurses, who were looking up things with and for you Also glad you are feeling better, too!! Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 29, 2012 Author Report Share Posted February 29, 2012 Thank you ladies I had a talk with cardio this morning, my potassium was 2.9 this morning and my bp is 150/105, I am on high dose liquid potassium. He listened to me and lowered my florinef to 0.3 mg (0.1 three times a day) and added midodrine at 10mg 3 times a day. And staying on gabapentin three times a day. I have to stay a little longer to be monitored and then will go to neuro, cardio is very concerned of the progression and is trying to push neurology to get me to vandy, since they have all the connections They are worried about waiting on this because its so severe, and he doesn't know what all we are dealing with. But it is progressing fast. I am not worried though. My family and church family are taking care of us and I have people to stay with me when I get home so the kids will be safe if I faint again because my blood pressure doesn't stabilize and I continue convulsions until i hav 2-3 hrs of oxygen and saline. Thanks ladies for your concern. I am encouraged though. Will keep u updated Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 29, 2012 Report Share Posted February 29, 2012 Oh honey, I am sooooo happy to see you posting . I was VERY worried about such a high dose of florinef. I am so thankful that you had the courage to talk to your doc and that he listened. You are very blessed to have such wonderful help- at the hospital and from your church family. So may of us here care a lot about you too I will keep the prayers coming. Try to relax and heal. It sounds like you are in good hands now. Healing hugs-Julie Quote Link to comment Share on other sites More sharing options...
heissovereign Posted March 1, 2012 Author Report Share Posted March 1, 2012 Thank you, you have really blessed me with your care. My bp is better its down to 133/70 midodrine side effects are doable but I hate it, my scalp felt like it was crawling and the chills and headaches but I'm gonna hold out. I just can't believe I will be taking. 13 pills a day. I hate pills. Oh and my nurse said with my hr staying so low to ask for second opinion from my ep to get a pace maker She and I feel it will at least help my low rate, that is what makes me so tired, so please pray my ep will be open to this. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 1, 2012 Report Share Posted March 1, 2012 Has your HR always been low? I ask because your DX is identical to my son's and his HR can REALLY drop- into the low 30's- usually when other things are going on. He has severe GI issues, slow motility and gets small intestine bowel overgrowths/SIBO's. When that happens, his HR can really drop down. It's like a signal to us that something else is going on- some other infection, etc somewhere else in his body. You KNOW, my prayers are still coming. Heal & feel better!!!Julie Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 1, 2012 Report Share Posted March 1, 2012 I'm so glad to hear that you are doing a little better and that your florinef dose was lowered. I prayed for you a lot last night and today! I hope that you'll be able to get into Vanderbilt soon and get the answers and help that you need. Please keep us posted.Rachel Quote Link to comment Share on other sites More sharing options...
heissovereign Posted March 1, 2012 Author Report Share Posted March 1, 2012 Mrs julie, its been low during rest and some while up since childhood. Rachel- thank you for being obedient to the Lord and praying for me, we have seen his providence in all of this. I just wish I could live more independently, when I get home someone has to stay with me during the day because I have to be sure my kids are safe if I faint and remain unstable and they can get me help. It seems so unreal my friends and famil want me to get the life alert with fall indicator. Its hard to think about at my age. But the nurses and doctors are worried about time with the progression, and they were told vandy is packed right now, even my neuro is going to overbook herself to see me for the neuropathy tests, and I'm going to be a new patient I have only seen her in the hospital. But I can't worry just gotta be patient Quote Link to comment Share on other sites More sharing options...
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