Nicole's Mom

Hi Rita, Thank you very much for your imput and suggestions. Hopefully this new doc will use the best and wisest approach for her. He has an integrated approach of traditional and natural. Also we still have a whole raft of other tests- about 100 different things to be looked at from the other doctor she saw on Sept. 15th. There could be some overlap in testing between this new doc and the Sept. 15th doc but that's okay. Also I don't know if Nicole will end up back in the autonomic lab of her POTS doc when she is sturdier to undergo some of his testing. He is the one we had the phone consult with who didn't think Nicole should take a beta blocker at this time and didn't want to put her on any POTS meds while she was this weak. There are two other docs to contact yet who might be able to lend some help to the picture. This weekend my husband and I are working up some talking points about Nicole's illness to present to them and then to get a feel for their knowledge. One is a nephrologist and the other would be someone who could lend some imput on Nicole's possible chronic spirochetal infection which could be either Lyme or leptospirosis or even both. The second guy won an award for a paper he wrote about a veternarian who was exposed to leptospirosis and then came down with an addison's-like disease. (or addisons disease specifically). We'd like to read his paper and pick his brain a bit. Beverly

Wow! What great responses and info you all have sent me and all of the information. This new doctor is doing all sorts of tests some traditional medicine and some alternative as he is an MD and an ND. We have come to the conclusion that although he is a creative thinker and invested in trying his ways to get to the root of some of Nicole's problems that he might not understand how sensitive she is to things she puts into her body as many of you are sensitive. Plus not only that even a healthy, sturdy individual might have reactions to the mercury challenge. The test that revealed mercury in the past was a stool sample. Nicole explained to me why one would use an agent that binds to mercury like DMSA is better than a stool test- but I cannot remember how she explained it. She feels like she is in a catch-22 because the treatment for mercury can make one very sick yet mercury can make one sick as a couple of you have said in your posts. This mercury challenge test which pulls some mercury from the body and is urinated out (collected) can wreak havoc in several ways. Dr. Cheney (Nicole saw him a few years back) thinks that if indeed Nicole has mercury it came to her in-utero since I have many fillings the size of the Great Lakes in my mouth and Nicole hasn't the fillings in her own mouth to substantiate the amount he found in her stools. And tuna and fish were not big in her life growing up. This new doctor still wants to retest for mercury as does the traditional doctor we saw on Sept 15th but at this moment I am not sure which test Sept. 15th doc wants to do. Apparently each of these docs thinks that mercury in the body is a really big deal. I have read lots of literature re: how it can screw up one's hormones which can lead one to believe that it is an important issue to address. Having said all of the above, late yesterday Nicole left word (answering machine) with this new doctor that she felt uncomfortable with this method of testing and suggested gentler ways. Still even a positive result from a gentler way of looking for mercury leads back to the catch-22 of removing it from the system of one who so sick. I read some scary stuff about this. And my nephew who is an ND confirmed that removing heavy metals from one's body is very risky. It seems like Nicole would have to be at a very sturdy place to do this. And if she also has a chronic spirochtal illness which is a possibility but yet to be confirmed that could become exascerbated by such a procedure and cause a total relapse again with her dysautonomia symptoms. Even oral antibiotics and then IV antibiotics which Nicole used in 1996 for this possible spirochetal infection set her way back from the herxing. That's a whole other issue which has yet to be addressed again. I have gone on and on here- it's just that nothing is cut and dry and sometimes things are ambiguous and it is good to be pro-active and take some risks but some risks are ambiguous- like major double edged swords. I guess the way to approach it is to take it one step at a time and weigh each decision carefully when one presently is as sick as Nicole and ask you guys for your wonderful opinions. On a positive note (being cautiously optimistic) yesterday Nicole was up and around more in the afternoon and evening than she was the day before. And the interesting thing is that she was up getting snacks and things to eat- not wanting us to fetch the stuff. She is definately eating more- not tons - but more -and the nausea hasn't been there for about a week now. Plus yesterday for the first time she closed her room off for a good period of time and wanted some "space" which is a good sign because she had been feeling so vulnerable and afraid she wanted me in her sight and her in my sight. When Nicole feels better her need for "space" increases. Of course that was just yesterday so far- one time- but still- it could be a sign. And I think I mentioned that she is sleeping more deeply for more hours and I think she is peeing less. She is sleeping now still and her doctor just a second ago left a message on our answering machine as to when he can be reached to discuss the mercury issue. Thank you all again for putting so much thought and effort into the question I posed. It is so difficult to make certain decisions and to understand what's what sometimes and when this mercury thing came up and the day before the rash came up I came right to this computer and began typing to you. I cannot put into words the feeling of comfort I have that you are all there and so available and the way you help and think things through. This has been such a rough time and without all of you I don't know where we would have been. Now it's really windy and rainy so I better send this post in before my computer blinks off and on and then I'll lose all I've typed. I'll let you know what ensues today with Nicole's conversation with this new doc. Thanks again with all my heart, Beverly

Hi. Another question. First let me tell you that in spite of that rash- since Nicole has come home -all of your good thoughts and prayers are starting to pay off in tiny ways. In the past couple of days Nicole is a smidge more ambulatory - her appetite is slightly bettter- and she is sleeping better- more deeply. She still has horrible brain fog and still must lay down and still cries about things that are terrible but I think it's that she is more relaxed here and is generally less stressed. So in spite of that rash these subtle improvements have occurred. There is just something about Nicole that seems better in a few ways albeit subtle and slow. Okay the question: The new doctor who is an MD and an ND and went out of his way to come to our house to see Nicole and took lots of notes and listened carefully and has good credentials has ordered some tests and Quest Lab will be coming by either this Thurs. or next Thurs. to draw some blood for endochrine and some simple things- (they said they were really backed up). Meanwhile the doctor's secretary just called and she is having my husband pick up some other tests in the form of kits. Saliva tests, cortisol tests, urine collection things and SOMETHING THAT LEADS TO MY QUESTION which has to do with a mercury challenge test. Nicole has to take 10 pills over a period of time and I think collect urine. She has tested really high in the past for mercury under Dr. Paul Cheney's care and mercury is known to wreak havoc with your health and with endochrine systems - Nicole's endochrine system is a total mess. Nicole tried gentle measures in the past to clear out the mercury but had to stop the process because it made her ill. Meanwhile Nicole has heard that this mercury DSMA "challenge" test can make you really sick. I just looked on the web and did see some evidence to back this up. Anyway Nicole wants to be a good patient since this doctor is so invested in helping her and we have no one else to help her right now but she is concerned about this test and so am I if it will make her sicker. We all know how sensitive a POTS patient can be and now Nicole is just starting to show some subtle improvements and I don't (and she doesn't) want to get worse than ever from such a test. Yet if her mercury is really high and messing her up would we want her to know this? Wouldn't we want to correct it? Has anyone else heard of this DSMA mercury challenge test or undergone it? Has anyone every found out that there mercury level was really high and had it cleaned out of your system? I have heard from my nephew who is an ND that the cleaning out process can make one really sick. Anyway this is a challenge and not the clean out but still any help would be appreciated. Any help at all. Thank you. Beverly

JLB, This will sound like some of the other advice but it is so important to be repeated. Do everything you can to head off a downhill slide. If there is anyone like a counselor you can go to to talk about your stress maybe you should do that pronto and of course come to this forum like you are doing. I see what stress does to Nicole and I see what the alleviation of stress does too. You are watching things snowball in the wrong direction. Brain fog makes it harder to focus on what you need to do so that you can intervene in your own behalf. What I would do is make a list on paper of everything that is feeling wrong - healthwise/symptoms and stress- and next to it what you can do to try and alleviate those things. This way it's on paper in front of you - a plan- some clarity. And then take it one step at a time. I will keep positive thoughts going for you. Take care. Beverly

Thanks opus88 - Nicole wondered if it might be related to the probiotics. Just in case she stopped it all together. JLB- Thanks for lettting me know about the book The Dysautonomia Survival Guide. I will go on line to try and track it down. And thanks for sharing that you are just getting over a rash. Beverly

Nina, I sure hope you can get on a pain med that works for you! At least now you know exactly what is causing the pain. You have every right to be cranky especially since you are always such a trooper. You have had a lot to deal with as of late. Anyway I will keep positive thoughts going for you and say a prayer that you will get relief SOON!!!!! Beverly

Thanks Nina for all the tips. That body lotion sounds great. And thanks Gena for your response and all your good thoughts. Beverly

Thanks avais 1 for your reply. I am so sorry for that horrible sounding rash that you had. I'm glad that is over with. I know someone who had one like that - that her hands and arms were peeling by the time it was over. Nobody could help her. I remember her being slathered with Calamine lotion and all wrapped up and she was taking something oral. It had to go through it's course. I just hope that this rash of Nicole's doesn't get too, too bad or it will drive her crazy. Meanwhile - thanks for sharing what you learned from your doctors, etc. Beverly

Hey it worked! I even got another face in (inadvertantly) up in the higher region of my post and now I'll see if I can do it again. Thanks Michelle. Beverly

I'm going to try it right now . Uh oh. These look like symbols to me. Maybe when I post it they will be faces. Here goes nothing. Beverly

Michelle, The new format looks great. It's neat and tidy. Thank you so much for all you do to keep this forum running so smoothly. It's so organized and efficient and wonderful and many other things that mean GREAT!!! GREAT!!! GREAT!!!! Here you are - so computer literate- behind the entire running of this marvelous forum and I can't even figure out how to add a clickable smile. (One day I'll learn.). I think you are brilliant! Regards, Beverly

Thanks Nina for your well-thought out comments. Actually Nicole has a really high IgE which can be indicative of a histamine disorder. And it is being looked into (as soon as some blood draws begin). Thanks for reminding me about this. The probiotics that Nicole has just started could be related -so she is laying off of it for a while. Thanks for the tip about the benedryl. She does already take Zyrtec - everyday as an antihistamine. Would that have the same effect as Benedryl if this was allergy related? Regards, Beverly

Nicole hasn't done anything different except to add some probiotics to her regimen. She has used these probiotics many times without any problem but now she is starting to get a rash. In 1998 when she was really sick in a relapse she had a rash over her entire body for about two months or so and it was excruciatingly itchy. Nobody could say exactly what that was. Now she is beginning to get a rash which is starting to spread and she is afraid it it might become what she had in 1998? Anyway I know recently there was a discussion of hives. But this is not hives. It is flat (like measles used to be except larger) and some tiny bumps and it is itchy. Anyone else ever have this? Anyone ever see this as a direct or indirect symptom of dyautonomia? Skin creams might help but just looking for a link to POTS or anyone else that has had this. Thanks, Beverly

Blackwolf, I hope you slept okay last night and mostly I hope that you can gain closure and peace of mind. Beverly

Thanks Jessica. It was so similar for Niocle how you relate what it was like for you. Nicole's boyfriend works all day - long hours and even though we'd go over- her father and I over now and then a friend would as well but she was alone way too much. Like you said- that was really hard. And it's not good to be alone like that when you are sick. We did have a nice Thanksgiving and I hope you had a nice one as well. Regards, Beverly

Hayley, Good luck for a great outcome to your hospital stay. I will keep you in my thoughts and prayers. Ditto- big time- to what Briarrose suggested. Best Wishes, Beverly

Nina, I wish you well with your MRI and hope they can detect what they need to in order to relieve you of your discomfort. Hope you are able to enjoy your Thanksgiving- glad you got that med. Best, Beverly

Geneva, Thanks to you as well for your response and about your experience at Mayo. I wish you a happy Thanksgiving as well and will pass on your thoughts to Nicole. Beverly

Emily, Thanks for the recommendation for the Harry Potter movie. I came so close to grabbing it from Blockbuster just 1/2 hour ago (I just saw your post- right now) but I wasn't sure if Nicole had seen it before she came to live with us. Anyway I didn't get it but Nicole said it should be here in a few days via mail via Netflicks. You are so insightful (and experienced) to state how the POTS person feels so sick and the caregiver feels so tired so it's hard to hang out but in just the last two days Nicole is a little more perked up at night in that she can hang out more easily and have conversations. She is like lead until way into the day. Tonight she and her father are going to watch The West Wing and her father is going to give me a foot massage while I read something mindless like some dopey magazine. If only I can get dinner made first for the three of us- which presently seems like a daunting task but I'll get it done. My husband will clean up afterward. He is the one who has all the physical energy. I hope you have a nice Thanksgiving, Emily. And I hope you find the relief you need too-so you can get well too and get on with your own life. Lois- thanks for your good vibes and your suggestions. Nicole cannot sit up for more than two minutes without getting sicker but her bed is raised so high at the head I'm surprised she doesn't slide down like one would off a sliding board. It's raised more than what is recommended to prevent deconditioning. The last two evenings being a little perkier - as I mentioned to Emily- she is able to prop herself up on her elbow for short periods of time. Radha- Nicole has her moments when she worries about a lot of things but she does not worry about me kicking the bucket or anything. I am so glad for you that you have such a loving mother who is your angel, counselor, best friend, and godsend. If your mother is that strong and can wear that many hats she will be around for along time. She sounds like she is in way better shape than me (as I've mentioned I have chronic Lyme and I am not going anywhere soon). One thing that Nicole is good about is understanding that I need some space. That helps. Like today- her therapist came to the house for their appt. and I told Nicole I would be out for a good, long while before and after the therapist. Nicole was all set for food, water, etc. and she smiled at me and said, "have fun, mom." Even though I walk around the stores with a heavy heart I need for her to be giving in that way. I don't leave her alone in the mornings though because that is when she feels her worst and her mood is down. Today her mood wasn't too bad - it's pretty good- but yesterday she was crying for about an hour and venting. Afterward - she felt a lot better. I'm sure it feels good for you to vent too. And vent you must. You asked if anyone knew of a doc who does phone consults. Where do you live? I understand how hard it is to travel because Nicole is in the same boat. Maybe there is a way to find a doctor to come to you. We had one come here Monday. It's rare but possible. Today I called his office (his secretary) to see if they got the referral number from Nicole's pcp and the house-call doc answered the phone. He was so nice. He seems to really be thinking creatively about Nicole's multi-pronged problems and dysautonomia (highly possible a chronic pathogen involved, plus pcos, allergies, yeast, etc.) On Tuesday he will fax Quest Labs all the bloodwork and urinalysis he wants to do for endochrine, catacholamines, etc.- the works. They will draw blood in increments. Plus I think he does saliva testing for specific hormone deficiencies. Anyway I told him on the phone today how much we appreciated his efforts and that we were so grateful that he is getting invested and he very kindly said "I want to help Nicole get better." I had described yesterday how his mother was in my writing group - well it is a very small world because Nicole's therapist who came today to see Nicole also uses him as her doctor. She thinks that he will try to help Nicole get better. Anyway, Radha, maybe that is the route you could try. It might take a lot of phone calls by your mother but if you can find a doc to come to the house then right away you have a compassionate person. It's not Mayo clinic what we have going here but it feels pro-active. We can't get out right now but help is coming to us. I encourage you to try that route too. Take good care and thank you for your kind thoughts. I will keep good thoughts in my heart for you. Best Wishes to everyone. Have a lovely Thanksgiving. Beverly

Thanks all for your kind replies and hugs and prayers and suggestions and answers to my questions. Today the doctor's office called- -the doctor who came here yesterday to pay the house call- and we learned that Quest Labs will be receiving orders from him to come to our house to take blood and urine over several visits. We aren't exactly sure what approach this doctor will take but he does integrative medicine being both an MD and and ND. And he seems smart and creative and willing to learn. I'll let you know. . . It is indeed a small world. When I met the doctor- I realized that I had met him at his house last Spring. I had gone for a memorial ceremony for his mother - Jackie- who had been in a writing group I had hosted at my house for a year and a half. His mother had sat at my kitchen table every other Thursday for well over a year until illness debilitated her and then took her life. She was in her 70's. Actually the other four of us in our writing group took turns reading to the "assemblage" at the backyard ceremony- Jackie's favorite vignette - one of many humorous and poignant vignettes she had written and read to our group. I still have all of her writings. Anyway - I don't know why I'm telling you this- I just felt like it. Nina- thanks for the hug and saying that you will keep us in your thoughts. It means a lot. wsc- fine to ask questions- welcome to this great forum- Nicole is 28 and got POTS when she was 20. We can look back and see signs. She has not been bedridden all of the time but way too much. rita-thanks for your wishes and your advice about Mayo. Much appreciated. JLB- thanks for your prayers and good thoughts- you are so thoughtful and kind. Blackbirdsings- Thanks for your personal message and I'm glad to see that you got a name so you can post on this forum. Welcome to you. I hope you find some relief as well. There is a lot of information here and a lot of kindness and support. Keep posting and hopefully you will find some answers and we will learn from your experiences as well. Blackwolf- thank you for your empathy re: this illness and your imput re: Mayo. I didn't know there was a Mayo other than Rochester, MN or am I having a vague recollection that there is a satellite in Florida? Funnyfrog- thanks for your helpful words and your wishes for us and your imput about Vanderbilt. I've noticed others mentioning Vanderbilt and I've heard of Dr Robertson- seen some of his literature. Maybe it is something to look into further. Others on this forum have been there. Maybe in time I will post a question about their experiences. Gena- thank you for your kind words and for your "mantra" for making one's spirit feel better. And thanks for the book idea about healing. Just today I looked up some books about healing on the internet. I will check out the one you spoke about. Katherine- thank you for your support. You are always so supportive to so many of us. I know that you really "get it". You are so there for Nicole and I. Wareagle- I'm so glad that you also have found comfort back at home with your mother. It is so important to healing. And thanks for answering my question about the Clonodine. I asked about it because yesterday the doctor mentioned it in passing as he was gathering information. veryblue- I'm glad what you see about yourself. That is so important. Thanks for your thoughtful words. You always respond with such kindness regarding Nicole. Ernie- Thank you for your response. I'm sorry that you cannot get to Mayo. Where do you live- I know you've said before but I have forgotten. Today I picked up a small Turkey and it will be nice to have us here together for Thanksgiving. Later in the evening some family may come by for a quiet visit with Nicole who can't take too much exertion. She is looking forward to this. It is a tough time and I am heeding your advice to try and take care of myself. It is hard but I think it was way harder having Nicole in that apartment and knowing all the things that went along with her being there. She is definately - as I said- so much more comfortable here. I think that she has a much better chance of healing faster being here. Her room is half bedroom - half den -as our house is extraordinarily tiny but it's good for all of us hanging out and watching movies or a TV show. There is a couch and chair in there. And today she said that she really likes the room. Being in there. I am so grateful to all of you for your support. You all understand and empathize and man oh man does that ever help. Best Wishes, Beverly

Hi. I"m sorry that I have not been here for a while to write about Nicole. I wanted to but I think I've been too tired and too immobilized to write. Nicole is still in rough shape. It's been up and down. The only thing she has going for her now is that late at night she has a window of time where she can read or write. It's a very short period of time - like and hour or so but I'm hoping it's a sign. But she still cannot ambulate except for bathroom trips and her brain is like clay except for that window of time late at night. Plus the slightest exertion still sets her back. She has never been this way- where the exertion/set-back thing was such a factor. We had the phone consult with her POTS doc back a couple or so weeks ago and he is not going to offer anything at the present time. Nicole asked him about a lot of things. One thing is that he said he does not use beta blockers. As you know she had the Toprol in her possession and had begun taking it and then stopped when her period came and brought worse symptoms. This was before the phone consult. She has not started taking it again. Her local doctor went to her apartment to pay her a house call. He wrote a prescription for Wellbutrin and for Seasonale. He did not push her to take the Toprol. Then Nicole had a phone consult with a mid-wife who suggested taking the pill she was already on (which is 20% estrogen) continuously without the placebo week even though she has break through bleeding. Meanwhile the local doctor suggested another doctor who he thought was smart and we called that new doctor and he came by our house today. (We brought Nicole home to our house on Saturday to live with us). The doctor who came by today is an N.D. and and M.D. He has no experience in treating POTS but seemed to know about it to some degree. He spent and hour and a half here. He asked a lot of questions and Nicole said he was a very good listener and he took lots of notes. He said he would read through Nicole's thick medical records. I also gave him some literature to read. His plan is to do some bloodwork to recheck Nicole's immune function, endochrine, norepi levels, cortisol and a few other things. He is setting it up to have Quest Lab come here. He doesn't like Nicole taking synthetic hormomes (i.e.- the Pill) for her PCOS and wants to give her some natural hormones. For now she will take the pill until he does the endochrine testing. He seems to be a creative thinker yet he knows how serious her condition is and how uncurable POTS is. He will TRY to help but he wants Nicole to keep connected to the POTS doc- the one I mentioned above. We told him about how the POTS is not going to help her at this time. I called Mayo clinic the other day to inquire about the whole affair. If we were to bring Nicole there in the condition she is in presently she would have to be admitted. It would be scary to imagine her doing this presently as an outpatient. She cannot even get out of the house- nevermind traipsing around from motel to Mayo, etc. Also we would rather do air ambulance both ways and would have to work with insurance to cover it. Has anyone here ever used an air ambulance as opposed to the Angel Network jets? We used air ambulance once before and it was tough to get it covered. That required a lawyer after the fact. It was a total emergency to get Nicole from CA to RI and we took a huge loan against out house to pay for it. Anyway regarding Mayo there are many huge hoops to go through to be an admitted patient to Mayo nevermind the air ambulance factor. Has anyone here on the forum been admitted as opposed to an outpatient? They are booking for February but once in a while with the right letters from the right doctors I was told you can get in soon. But it's very rare to have this happen- I was told. I'm not quite sure what would qualify as the right letters from the right people. Yesterday was Nicole's first full day here. She is so relieved to be here and yesterday was the first day she felt hunger (later in the day) in 8 weeks- since this relapse within a relapse began. Today was not so great and her hunger wasn't as great. But she always tries eat. She has lost a lot of weight. But the fact that she had that hunger yesterday for the first time in 8 weeks was a maybe small sign of good things to come. Because her psyche is so tied into autonomic stuff _ I am hoping that this sense she has of being "tucked in" at our home will help to bring her around. She needs lots of love and nurturing and can get that more readily here. She did not grow up in this house but she does feel at home. I cannot even put into words the relief she feels to be here- and grateful- she is so grateful. Within ten minutes of being here she broke into sobs of relief. She was ready to come here and felt she had made a good decision. This is a bad, bad relapse. She has come out of relapses in the past slowly even without salt and fluid loading which she is doing. And she has come out of it without Beta Blockers. Still I am afraid of the fact that she is not using a beta blocker. The doc who came today is starting off with some natural things once he gets some test results and maybe some traditional drugs but he was not big on the beta blocker. I don't know if he will change his mind. He wants to run those tests before he gives Nicole anything. I don't know if in time he will want her to try "drugs" as opposed to natural things. At this point I don't know what to think or expect. I have called lots of local docs- like cardiologists and neurologist and threw around the POTS lingo. Nadda. I called a nephrology group at our local hospital and also threw around words POTS, dysautonomia, hypovolemia. The nephrology group secretary got back to me and said that they knew about this. To what extent I don't know but I showed my husband the list of docs in the group and he works at the hospital with many docs as a bio-statistician (among other things) and he said that one of the guys in the neph group was a friend of his. So we are going to put together some talking points and my husband will call this one doc and have a long talk with him. I think that having this illness is so horrible but to have to reach around so hard for help is just beyond my comprehension. The whole thing- this illness - the severity with which Nicole suffers from it and the lack of help is beyond my comprehension. Every day my husband and I talk about the sickness in our hearts and the pits in our stomachs. I'm sorry to be so negative right now. I am just so sad and griefstricken. I just need to vent at this point even though it was hard to get up the energy to do so until now. I feel so fortunate to have all of you caring folks and this forum. I just hope and pray that over time Nicole will improve with time and by being here. Anyway I just wanted to update you about her and say that I have checked in almost daily to read what is going on with all of you. But I have not been able to get up the psychic energy to get my fingers onto the keyboard to do much more than respond to a couple of your posts. Nonetheless I have kept good thoughts for all of you in my heart. I know I've asked before but if you could send some positive vibes again this way I would be most grateful. And one other question- does anyone use clonadine and why did your doc give it to you? Regards, Beverly

Jessica, About flaxseed. I had to do a lot of research for myself for breast cancer prevention reasons and I learned that flaxseeds contains phytoestrogens-. Now, from much of what I read I got the impression that the "jury" is still out on these phytoestrogens and how they work in a woman's body. Because you are pregnant -not just for you- but for your developing baby, I think it might be a good idea to look at flax very carefully before using it. I actually used it for a while and simultaneously a fibroid I had grew to the size of a grapefruit from the size of a plum within months. Coincidence? Or hormonal screwiness from the Flax- phytoestrogens? I like Emily's idea of prunes or prune juice- especially warm prune juice. It is an old fashioned remedy but it seems safe. Can you take magnesium while pregnant? Like magnesium supplements? Sometimes when I get backed up from taking loads of iron (because of the fibroid and heavy bleeding) I find that magnesium helps me go. 400 mgs. at night and in the morning I gotta go. It might take 2 days sometimes to kick in. Also drink lots of warm fluids. I hope you get relief really soon. Beverly

Stacy, I am glad your father is better. If you think you have edema then you wouldn't have hypovolemia. That is when there is a shortage of fluids. Some time I'd like to know about your diet and "other things" that may have caused the edema. That's what Nicole could use right now. Thanks for responding to my questions and your offer for Nicole to vent to you when she can function a bit. Thanks for your empathy as well re: the doctor thing. Actually it was her POTS doctor of 5 years who will not help her at this present time. That has not very easy to deal with. I have been unable to summon up the wherewithall to post a topic on the very disappointing turn-of-events. I have been occasionally reading posts and when I can will write again in my own new topic about this matter. This week we are still trying to take care of Nicole - going to her apartment- making meals etc. while scattering around doing what is necessary to bring to our house to live. There is a lot to do. Take care, Stacey and thanks again for your caring while you are going through your own difficulties. Beverly

Stacey, As the mother of Nicole who has had 8-1/2 years of illness I can understand how you feel just knowing what Nicole goes through- her hope waxing and waning. We spend a great deal of time reassuring her that she will get better. I read over your post from way back that listed all your symptoms. I really feel for you and I know Nicole would too because she can relate to being so sick and so sick of being sick. I think it's natural to feel grief and when Nicole cries we try to soothe her. Crying always makes her feel better. I hope you allow yourself to cry. It's great that you come to this forum to vent. Nicole vents a lot. In spite of everything, most of the time Nicole does not let go of hope. But sometimes she does. Her POTS doc ( I will post about this when I can drum up the energy) just informed her that he cannot help her "at this present time" - even though he expressed empathy and compassion. ( I will explain at some other time and describe how it "felt" to learn this when we most banked on getting help). We just had a phone consult with him yesterday. This is not meant to bum you out- this post - only to let you know that you are not alone. In spite of disappointments and dead ends I will not quit looking for answers and educating myself so I can help Nicole get well. There is still so much more to learn with this complex disorder. Sometimes it's daunting. If I was well myself it would be easier. But I try to pace myself. I truly believe that to give up looking for answers is to give up hope. Just one question more- you were so good to list all your meds. You tried Florinef I see. How would you rate the hypovolemia aspect of your illness? I never quite understood if everyone with POTS has hypovolemia. You didn't mention salt and fluid intake in your med list. I am so sorry that your father is so ill. I hope that his mental confusion is from the meds. This was the case with my mother-in-law. After a knee replacement she was completely and utterly out of it and confused and we were worried but it was meds. Take care- Stacey. I will think good thoughts for you as I try to find answers for Nicole -hoping that what might help her might help you. Beverly

Thank you Emily- I found your website which led to others. I really appreciate it your help- You're very kind. I know how hard it is for you to type sometimes. And Gena- thank you for your reply and your kind words. I actually use progesterone cream myself and you are right about the benefits. I will definately research the other herbs you mentioned. I also have to learn more about PCOS as that is a condition where there's too much of the androgens. It's interesting what you said about the need to shed the lining of the uterus. I was wondering about that. I think it makes sense to have one's period 4 times a year- shed that uterus. I think that if Nicole could go three months without a period and without ups and downs from hormones she might stand a better chance of making some progress forward. I mean she has in other relapses made progress with such hormonal chaos but this is a really bad relapse and I'm just looking for ways to make the ride a little more forward without so many steps back. Again- thank you. Beverly