Nicole's Mom Posted September 29, 2004 Report Share Posted September 29, 2004 Hi. I am writing in behalf of my daughter Nicole who is presently too ill to sit up at the computer. We are new to your forum. I discovered your website about 3 months ago and was astounded to realize that there are so many of you who actually have POTS. We thought we were all alone in dealing with this. Your website is unbelievably well-organized and the support is amazing. I have been passing useful peices of information to my daughter from your posts. I am hoping that some of you can try to answer a few questions and send support to my daughter who is struggling terribly right now in a major relaspe. She was officially diagnosed with POTS in 1998 by a dysautonomia specialist on the East Coast. I will give you the short-short version of her story. I?ll make it as short as possible -because the long version would take weeks to write and to read. Nicole is 28 and became ill in 1996 at the age of 20. Nicole was home on a visit to Rhode Island from California. All of a sudden one day she was overcome with all sorts of problems. We brought her to the ER and they admitted her. Her heart rate was way up. Her blood pressure would drop upon standing - she felt faint, nauseous, achy, and she had strange sensations running through her body. After 3 days of running a handful tests on her, the admitting doc (internal medine) sent her home calling her a psychiatric case. Shortly thereafter we brought back to the ER and her standing heartrate was 185. Her blood pressure was dropping to basement level. This time a different doc admitted her and for 2 weeks they brought in all sorts of specialist. Basically they scratched their heads and eventually sent her home stating that whatever ?this? was it would go away. We brought Nicole to many, many docs after this. It became our new lifestyle going to docs and Nicole was unable to do anything but lay down and feel very uncomfortable. Finally because she was experiencing such anxiety we brought her to a psychiatrist - a brilliant, brilliant, compassionate man who could think way outside the box and was good at connecting dots. He was shocked that nobody had tried Nicole on Florinef or any drug for that matter. He didn?t even address her anxiety. He put her right on the Florinef. She was able to tolerate it and 1 pill got her upright and mobile and walking. Her anxiety and depression lifted. She wanted to resume her life. However even though she was upright and mobile she was only around 75% of her pre-illness self. Life from there-on for her would become one long struggle, to say the least. Since she got on that one Florinef in 1996 her life has been a series of relapses and remissions. The 1 Florinef stopped working. If she climbed up on more Florinef then more would work. With each relapse, however, she needed more and more Florinef. Eventually she was on four Florinef. But now that doesn?t work for the hypovolemia and any more Florinef would spike her blood pressure too high. Meanwhile the brilliant, compassionate psychiatrist who initially put her on the Florinef and was following her case moved far away. Then another doctor who had entered the picture and was also brilliant and compassionate who understood dysautonomia and hypovolemia and all the symtomatic dramatics that come with this condition also moved away this past year. Now we have one local doctor who seems willing to be cooperate but he is not as knowledgeable about this condition. He is Dr. R. The situation is that in May, Nicole had a severe relapse - one of the worst we?ve seen and she has been climbing out of it little by little. And I mean VERY little by little. About 2 weeks ago she was maybe 35-40% along toward her remission baseline and we took her to a brand new doc (Dr. C) about 1 hour from home. This doc is smart and compassionate and is testing her for all sorts of things like pathogens and he is wondering why her histamine levels are so high- testing for that. He?s even testing for mercury (which was high in another test) and for lead. Anyway this trip to this wonderful, smart doctor turned out to be exerting beyond what we could have ever imagined. Maybe because he had her standing for bp and hr for a while and Nicole had to tell her 8 year story in one hour and they talked fast back and forth but Nicole came out of there feeling extremely exhausted while at the same time extremely wired (adrenaline on high). This exertion put her into a worse relapse- like unbelievable. She was crashing before our eyes. On one level Nicole and we-( her mother and father) cannot believe how deeply awry everything has become- yet on another level we can. In this relapse within a relapse Nicole is losing weight from the nausea and lack of appetite. Her standing hr is 150. She is wired. Fatigued. Twitchy. Anxious. Depressed. Mobility is horrible. And brain-fogged to practically a stupor. And much more. Meanwhile the local doc I mentioned above - Dr. R. had been away. Yesterday my husband called him to try and get our Nicole on IV saline to see if it would help. Dr. R. was cooperative and telephone the newest doctor - Dr. C -to learn more about this type of condition -dysautonomia and to see about all these tests he wants to run. We were relieved that Dr. R. called us back and was willing to put Nicole on 2 liters of saline. She received the saline and the fluids brought her symptom relief. Even though saline usually raises blood pressure Nicole?s supine blood pressure dropped from 140/90 to 120/70 (IV nurse thought high blood pressure was Nicole?s body compensating for dehydration). Nicole?s standing hr was 116 instead of 150. She could sit up. She could stand more easily. The nausea left. Her appetite returned. She could eat. The achiness subsided. Nicole said that it felt like her body had a much needed drink of water. (She drinks a lot of water normally but it doesn?t stick). But by late last night her head was becoming heavy again and she was beginning to feel symptomatic. And by this AM she feels really sick again- same symptoms. Presently we are in the process of setting up saline for a week- two liters per day - if for any reason to give her body a break albeit temporary each day from being so sick and from her body working so hard. It?s like her body is in this crisis mode. Maybe a week of this IV saline will help stabilize her. And if at the very least it makes her nausea disappear and improves her appetite even if for several hours a day at least she can eat and get some nutrional needs met. So one question ( of many- I?ll ask the others another time) I have for all of you- is about this very treatment. Have any of you had experience with IV saline? What is your opinion of it? I will let you know how this works for her over the next week. Also I have a question about salt. You often seem to talk about salt. How much salt do most of you take in? I read in the ?What Helps? section that 10-15 gms is recommended. We figured out that one teaspoon of salt in a glass of water is around 2 gms. And chicken broth is 570 mg. Right now Nicole takes about 3 gms of salt. A doctor once told her that too much salt can throw your body into an imbalance and make you lose fluids. Have any of you been advised of this too much salt thing? And what is too much salt? Nicole is very brave and can roll with the punches more than anybody I know - but this relapse is really bad and she gets worried from time to time about climbing out of it. So joining this forum seems very right to get questions answered and to get and give support. Thank you so much. And if you can answer my questions we'd be very grateful.Beverly Quote Link to comment Share on other sites More sharing options...
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