Nicole's Mom

purplefocus, Congratulations. I am so happy for you. I remember how unbelievably relieved Nicole was when she finally got approved. What a relief for you- and what a great pre-Christmas gift!!!! Beverly

opus88 I just realized that you posted the link for where you buy your cell salts. Thank you. Beverly

rqt9191- Nicole has been using Celtic salt for a long time yet still relapsed and has a major, major fluid depletion which like many of you makes life tough. What she is doing now is increasing her salt intake and she is using Celtic salt as her salt of choice. And she drinks organic chicken broth as well. She was on IV saline until yesterday. The first day the drip went in fast and my husband and I saw many positive things occur but they were temporary. A new needle was placed into her the next day and a couple since then but they could never get the drip fast again. I don't understand why. The drip was 3x as slow. Yet it seemed that Nicole did seem to benefit somewhat from the slower fluids but it was not at all like the first day when she said it felt like her body got a much needed drink of water. At some point yesterday she was on her 2nd to last bag (of 8 -2 liter bags) and just completely disconnected it because it was dripping in slower than ever- sometimes it just stopped dripping and then she couldn't stand it anymore. I don't know if it the slow drip was the home care IV company, the needle they used or something about Nicole's veins. I wonder if anyone else has experience this scenerio. Nicole said today that all of a sudden the adreneline feeling was back after a few days of respite. She began increasing her salt intake again now that she stopped the IV saline. I feel disappointed that the drip was so slow because it seemed like an opportunity to maybe allow her to gain some ground. She is so acute still yet a smidge better in some ways which could be due to the IV saline. Anyway I hope at the beginning I answered your question rqt9191. Opus88 - my god I have been so preoccupied with our own dilemna I did not realize that you were hurricaned out of your house. You must take care of yourself first by all means. In the meanwhile I will get the book out of the library - Metabolic typing. Your benefit from the parsley intrigues me as I thought parsley was a diuretic like celery. I will read about more parsley. I am wondering what form was your parsley in- was it in capsules or did you actually eat the parsley? Thanks, Beverly

Opus88- Actually, when I checked back again to where you posted on my question about Nicole- it was the Celtic Sea salt that you told me where to buy. I too would like to know where you buy your cell salts and which 4 you mix together. Thanks. Beverly

Opus88 I'm so glad that you posted a response to Radha. I think this is a great subject that you, Radha, are bringing up as I am still trying to learn more about this for Nicole. Opus88, you had talked about cell salts in response to one of my posts and described how to obtain it. I spoke to Nicole about it and she recollected once taking cell salts but couldn't remember much about it. I checked out our Whole Foods Market and they had cell salts but they were homeopathic and you had to choose among lots of these tiny boxes of cell salts based on what ailed you -like dry, scratchy throat or stomach ache, headaches, etc. etc. None were for constant urination. Then I telephoned a naturopath that Nicole used for a period of time and she only had homeopathic cell salts as well and same story as Whole Foods. You said you mixed 4 different types together. Do you still take it? Also did you learn about it only through the Metabolic Typing Program or elsewhere as well? It seems like something to really look into if it worked so well for you in the way that it did. (By the way Nicole has been using Celtic Salt - like you Opus88- you had asked in your post to me) Thank you Radha and Opus88 Beverly

Thanks Michelle for your answers to my questions. I guess I knew deep in my heart that it couldn't be that simple...the way I stated it. And thank you by the way for explaining about yourself and Nina and others with E.D. Beverly

Michelle, Thank you for your last reply. This is exactly the subject that I want to learn about. I just want to clarify what I think I finally understand and ask a question. Because Nicole's norepinephrine was so high I have to assume that it something was or is wrong with her vasoconstriction process. Therefore the norepi shoots out to try and counterbalance this. So something like midodrine would help the veins constrict therefore there is less norepi showing up in the body. So one needs a med to intervene. And to take it one step back in the process and ask my question am I to understand that what makes the veins dilate instead of constrict is not yet understood- except that all we know is that the autonomic nervous system is malfunctioning? Bev

Yikes!! A big oops. I just read my post. I am just out of bed and my still sleepy fingers hit the wrong numerical key. Nicole has seen 20+ docs over 8 years - not 40+. (probably just feels like 40++) Sorry about that. Everything else is accurate though. Beverly

When Nicole was first sick w/o a diagnosis and in the hospital for 14 days her norepinephrine levels were taken twice. In each case the reference range was 0-600 and her first result was 1066. The second result was 1080. Also her dopamine was tested. The reference range was 0-135 and her result was 873. I never really understood the meaning of these tests. I think she may have been tested for pheo and I have a recollection that it was negative. An MRI was negative for tumors. Otherwise - nobody (of the 40+ docs she has seen over 8 years)-ever seemed to make a fuss about the result of these tests. I don't have any indication in our records that she was ever tested again. But maybe Nicole has more paperwork in her files. Now that you are discussing it my interest is very high. What is pheo, by the way? Beverly

Radha, Nicole finds that her mind races too - like her brain is on overdrive. She too can feel wired yet exhausted which certainly seems like such a contradiction yet bizarre contradictions seem to be part of the POTS sceneriio. While "overthinking" to a degree seems to be something Nicole may have inherited, it certainly seems to have been very much amplified when her POTS symptoms first began. And then when her POTS symptoms flare it gets even worse- sometimes it's horrible for her- racing, racing thoughts- unable to shut it down on her own. So her remedy is to take Klonapin which quiets down her nervous system and thus helps to reduce her constant thoughts. The dose for everyone is an individual thing. Have you ever tried it? It also helps to reduce the wired feeling Nicole gets in her arms and legs and elsewhere in her body. She takes it as needed. Sometimes she doesn't take it at all and sometimes she takes as much as 3 mgs. per day in divided doses. Beverly

JLB- Sometimes it takes a while to feel ready to make certain types of phone call when it is a big step. On the other hand it might take a while to get in the door - you know how first appointments can be sometimes- so perhaps you can at least get the date on your calender and while your waiting for that date to come around you can build up your courage about going. Definately let me know how you make out- to start off with what date they give you to come in. Good luck. Beverly

Hi. It is morning now I would like to respond to some of your comments. First I'd like to say that last night Nicole's mood/ anxiety was much better. First of all she and her father just happen to notice (this was after the anxiety/ despondancy had already kicked in) that her Klonapin med which in her case helps the racing thoughts and that over adrenaline-y/wired body feeling was only half the dose it should have been. The bottle said .5mg 3x per day as needed instead of 1 mg. 3x per day as needed. Presently while so acute and overwhelmed she really needs the 1 full mg 3x. per day. Yet she was only getting 1.5mgs. Anyway that was straightened out immediately and when Nicole went up to the full 1mg. dose she could feel a difference - i.e. more relaxed and a reduction of frenzied, fretful thoughts. Which in turn reinstated/ kick-started her own ability to "deal" better which means that her situation became a lot more bearable. Which speaks to the sensitivity to drugs - certainly sometimes POTS patients need in certain cases only a teeny drug dose yet in other cases you simply need the full dose. Also as I mentioned before she began slowly raising her Zoloft dosage. I think she went from 25mg. to 30 mg. and will probably land on 35mg. So thank you all for your empathy and validation regarding this anxiety problem. And for all your hugs and kisses and well wishes promises of prayers for Nicole. She is truly looking forward to joining this forum and "meeting" you. She already wants to give back to you for your kindness. She is so grateful that you have been so supportive so far in such big ways in such a short period of time. She is very grateful that you have provided her with different takes on beta blockers and she is completely with you on the notion of starting tiny and going up slowly until the right dosage is found. And it is good for her to know that there can be slightly weird feelings even if it is the right drug as her body adjusts. There certainly are choices when it comes to beta blockers. What an education you are giving us!!! She also loves the Spontaneous Healing book by Andrew Weil. In fact just last week she watched his DVD of that same subject and she wanted me to pass along that the DVD is also wonderful and a bit different from the book and there are additional things about it that one can benefit from. She wrote down 7 short, important things she gleaned about dealing with illness. She wants me to pass these 7 important things along to you. When we go to her place I will copy her list. Also she is also right with you re: the notion of trying to distract herself. Since she cannot concentrate at all to write (she loves to write poety, fiction, journaling) or read (she is an avid reader when she can engage) or even converse- talking tires her out she listens to books on tape- inspirational, meditative types and she watches movies and TV but only specific programs that won't trigger anxiety. Anyway- this forum is a god-send. Nicole will feel right at home when she is able to join you. Thank you to all. Beverly

Thank you all so very much for your kind and thoughtful comments. I just came in the door and went WOW when I saw all the responses. I can't wait until the morning when I'm rested (I'm am so beat right now-) to read them all again and respond to some of your questions and comments. Until the morning -rest well all of you and thank you again. Beverly

Hi. I really need some help now with one particular question regarding Nicole and her racing heart. Something she asked me to post regarding a specific beta blocker. Which I will get to momentarily. First to update you. The IV saline seems to help somewhat. She gets relief - to a point. Yet the fluid does not stick. She pees most of it out. Anyway when her plasma volume is low her heart rate is around 150 when she stands. That?s since this relapse within a relapse. Before while in the original relapse it would go into the 120?s. She is exhausted. Plus she had an anxiety attack yesterday which lasted a long time and then she became very despondent. Before this she was hanging on better emotionally albeit struggling to do so. She is usually pretty tough and can bear a lot . She?s been trying hard to be hopeful and patient all over again but then yesterday all of a sudden she began to feel like this illness has become more than she can bear. That was yesterday and she has been unable to shake the feeling. She hates feeling so badly i.e. emotionally awful on top of the illness. Meanwhile she is upping an anti-anxiety drug and upping her Zoloft albeit in tiny, tiny increments which is how she has to do it. What is good is that she is the type to do what she has to re: her emotions instead of letting the emotions overcome her for good which is not good for this illness. Not to mention that the emotions are terribly uncomfortable. Anyway this morning she talked about trying a beta blocker. She?s often afraid to take a new drug but she can?t stand the heart racing and we all can see that this cannot be good to have her heart race like this. A few years back Nicole was more stable in a remission and went to see Dr. Cheney in North Carolina (took a month to recover yet she didn?t entirely relapse like this stretch- she was way stronger to start with before the trip). Dr. Cheney recommended Coreg to her and it has always been in the back of her mind as something to try. Anyway what Nicole wants to know is of those of you who have tried Coreg what are your experiences with it re: sensitivities/ success. Nicole is highly sensitive to drugs as many of you are but Dr. Cheney said this was one of the most benign drugs. Nicole knows that everyone with POTS responds differently to drugs but nonetheless she was wondering how you all have done with it. I researched some past posts and saw that some of you use Coreg as a beta blocker. But I could only find a handful of posts. So if you could help us in this arena we again would be most grateful. If you can describe the benefits you've received from using a beta blocker that would be very encouraging to her. Thank you, Beverly

JLB, I have e-mailed you his name. And if anyone else wants his name I will be happy to e-mail it to you. Beverly

Friday, my daughter, Nicole, can so relate to your problems. She does take birth control as she has PCOS (polycystic ovary syndrome) and birth control is a treatment for this. Often she has break- through bleeding, however. She always gets worse with her POTS symptoms whenever she bleeds and gets major cramps even if it's during the break-through bleeding. She does take plenty of iron and at least doesn't get anemic. She is thinking about going up on a higher level estrogen pill to try to stop the break through bleeding. She is so tired of these ups and downs when she bleeds she too is considering that method that gives you periods only 4 times a year. However the downside we have read about is that nobody knows what the long term effects would be of suppressing one's period in this manner. And there is still the chance of break-through bleeding. Beverly

I didn't know whether to add this to my last post or start another. But then I thought I'd start a new post because it's about a POTS doctor that I didn't find on your list of docs and I didn't know if you might like to add him. Meanwhile I can simultaneously answer your question Michelle. Michelle, yes thank-you, we do have a neurologist who specializes in disorders of the autonomic nervous system. He's the one who diagnosed Nicole and did the tilt table. We are very lucky to have him so close to us. We can drive to him- about an hour away. He has a small dysautomia clinic. He is smart and knows lots about the illness and has experience on what drugs are good etc. Although his focus is actually on research he does see patients in a clinical capacity (albiet he is not a fully operating clinician like Dr. Grubb). After all we've been through we do feel fortunate to have him- especially when I see through your posts how hard it is to find a specialist. Nicole sees him periodically and was due to see him a few days ago but could not make the trip because of the trip to the other doctor three Wednesdays ago which was too exerting and caused the relapse within the relapse. We were going to discuss pyrodostigmine which (correct me if I'm wrong) I think is the Mestonin, DDAVD, and Midodrine. The latter two he has already recommended to Nicole. He's very smart and we are looking forward to getting back to see him. Nicole has been considering trying the midodrine when she gets more ambulatory as we all know it isn't good for someone who has to lay down a lot which she is doing right now. I don't know if it's okay to place his name publicly on this forum without asking him. How do you normally go about such things? Is permission of the doctor required? He seems like someone you might want to add to your doc list. He might be of great benefit to anyone who might want to see him. He is in Boston. Maybe you could advise me how to get his name into circulation. Another thing about this doctor that is he went out of his way to help us out with another situation. When we brought Nicole home by air ambulance and insurance wouldn't cover it, this doctor wrote a great letter in our behalf to try and help us recover the money from the insurance company. We had tons of evidence that the air ambulance was indeed necessary but insurance said no no no. We hired a lawyer and this doc wrote an excellent, right to the point letter for us and it was of great help. That says something about him. When all was said and done we did get our money back ($18,500 less the lawyer fee). Now, having said all this about this good Boston doctor I'd like to add that we are always open to receiving names of any doctor who could help us, scarce as they are. Also we live right near Providence, RI. Do any of you live near us? Thanks Beverly

To all of you who have answered my post I sincerely thank you. I am overwhelmed with your lengthy and thoughtful responses. I appreciate the websites and the lists of meds (thank you briarrose) and your stories and how many of you have improved. Tomorrow I will read it all to Nicole. This will give her more hope. To respond to some of your questions and comments, Nicole has been officially diagnosed with POTS by a neurologist whose focus is mostly dysautonomia. She did have the tilt table test and it was "positive". So far Nicole has never tried any POTS drug other than Florinef. She is very sensitive to drugs and has been afraid because of her tendency to relapse to try other drugs. When I am not so tired I will tell you what happened to her while she lived in California- the extent to which she was reacting to her environment-and everything else and how sick she got and how we couldn't get her home and how we had to fly her home by air ambulance as the fuel smell inside the commercial jet sent her to the ER and more. Yet having said that about reactions and sensitivities, she is not totally opposed to trying something else- starting tiny and titrating up. She is so sick of being so sick and sick of being bedridden. She will have to get sturdier from this relapse within a relapse- just in case there are adverse effects. But now she is determined to try something new. Yes- we are learning that the IV is a quick fix and it doesn't last. But at least during this week each day Nicole might at least have a respite from some of the symptoms. I don't know what will be next. The doctor who is local that is just getting involved admittedly doesn't know a whole lot about POTS and we aren't exactly sure how deeply he wants to get involved or how educated he wants to become. The other doctor who is doing all the testing is only going to treat Nicole if something shows up on his battery of tests. None of the tests are geared to look for POTS triggers. But lots of other things. So in a way we are lucky to have someone to look for pathogens and other things but I think if we had a Dr. Grubb around here I'd feel a whole lot better. He seems amazing. I am so impressed how so many of you seem to make that trip to see him. Presently Nicole could never endure the exertion of that trip but maybe when she gets stronger one of these days she could go. Meanwhile we can follow what you learn from him we can pass it on to the local doctor who ordered the IV and hopefully he will remain interested. Nicole is not anemic just very, very hypovolemic. She does take Zoloft. She also takes Clonepin (spelling??) to help reduce the adrenaline feeling- it helps somewhat. And she takes an enormous amount of Potassium because of the Florinef. During remissions she can reduce the Florinef to 1 pill. Still who knows if it even works at all. If it doesn't get her upright on 4 pills does 1 even work- we wonder i.e. is the remission all on it's own. I'm sorry that so many of you have had hard times with doctors. I have read about your incidents from your more recent posts and from researching past post. We too have had our share of horror events with doctors. Prior to finding the doc (psychiatrist) who put her on Florinef we had some horrible situations. And after that too. It's bad enough to be so sick without having callousness or attitude or docs being threatened if you're educated or being deemed a psyche case a few times over by different docs. We can really, really empathize with those of you who have been treated so poorly. Again, thank you. Beverly

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