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Nicole's Mom

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  1. blackwolf- thank you so much for that specific site. I'm sorry that but I just noticed it and didn't see it before. I was looking generally under vanderbilt. But thank you so much for sending the www info. I will look directly at that site. Hope you have a lovely evening. Beverly
  2. Michelle- Thank you so much for that link. It looks very informative!!! I don't where you find these things but you are always a storehouse of information. I am so grateful. There is so much to learn and it's sometimes hard to find the info. Thank you again for sending me the info and thank you so much for all that you do for this forum. tearose- Thank you for your encouraging and compassionate words about Nicole and small steps. There have been subtle, small steps forward for her- really, really small and as you said a couple back. We hope and pray that she continues onward because this has been so difficult in so many ways. It's a tough thing to wraps one's brain around this whole ball of wax -the whole complicated illness. One thing I can never say enough is that the hope and encouragement and support from you and others on this forum have helped so much. I want thank you very much for sharing your story with me. How is your quality of life between some Lyme issues and the effects of Lyme- dysautonomia? I have not mentioned this on this forum because I totaly want to keep the subject totally about Nicole and dysautonomia, etc. (and certainly not about me by any means) but because I think it could help you to know this and make you feel less alone I will tell you that I know all about that Lyme "journey" and how it can take you on Mr Toads Wild Ride. I truly understand your comment about Lyme (""The journey is a story in itself, hopefully to share in person at a meeting sometime...") because I also have chronic Lyme- went 3 -1/2 years before diagnosed. I had a multi- systemic illness with severe brain involvement without knowing what was actually wrong. I was a total and utter mess in a million ways. Nowadays I am not my former healthy self - but fortunately I am a good deal better because of antibiotic treatment ( also I stay on oral antibiotics all the time or I relapse terribly). My ID who was BRILLIANT and also Nicole's doc knew about dysautonomia(but unfortunately moved away) suspected highly that Nicole has chronic, undertreated Lyme (or possibly a different spirochetal infection) and she thought Nicole could benefit from long-term antibiotics. This doctor also confirmed that Lyme can indeed induce dysautonomia as she had Lyme patients with dysautonomia (RI - #2 in the country for Lyme) To this point Nicole has not tried a therapeutic dose of antibiotics - one reason -because of the possible Herxheimer reaction where you can get worse before you get better with spirochetal infections and antibiotics. And she's afraid of a dysautonomia relapse (like she's in now). Yet she might do it one of these days-when she's sturdier - start low on orals and titrate up. But that's way up the road if it happens. I am so sorry that you have been through the ordeal you've been through because of Lyme and dysautonomia. If you don't mind me asking do you think you had signs of being prone to dysautonomia when you look back upon your life? We thought Nicole's came on suddenly but when we look back there were strange "things" even as far back as when she was a baby. We do strongly wonder if it was a pathogen (again- spirochetal?) that ultimately put her into this arena of disablement. You mentioned that you have mitro-valve prolapse. Was that discovered before or after Lyme? You've had to become very resourceful with your problems using non-pharm ways to get yourself about- since you cannot tolerate beta blockers or florinef. You said that you are doing okay yet have had to make MAJOR changes to your lifestyle. It is good that you have found pleasure in simple things. When Nicole is in a better place- when she is in a remission she too cannot live a full life. She has said that she tries to make the most of her moments which is nearly identical to your philosopy. Anyway- thank you again for your response and if you ever feel the need or have the energy or even want to revisit those days and want to unload about your Lyme "journey" feel free to e-mail me anytime. Also I'm so sorry - I don't know what lymphedema is. Did that resolve? I hope you have a lovely evening. Best Wishes, Beverly
  3. Morgan, I just read your post this am and I am so sorry for what you and your husband are going through. Your husband certainly sounds like a true angel of a man. I will keep good thoughts and prayers going for both of you. Take good care. Best Wishes, Beveerly
  4. tearose, Thank you so much for your offer. I don't know your whole exact story but my guess is that you already many of your own issues to deal with. But what a sweet and compassionate offer to go out of your way for me and Nicole. Besides perhaps you are right. Maybe some answers will trickle in once the election is over. Actually I really didn't expect a whole lot because the question is so way out there. Meanwhile if something useful does come my way I will be grateful. Also I have received an interesting looking reply from blackwolf by the way which I plan to look into later today. You said your norepinephrine is high and you would like to learn more. Interestingly, I have have finally grasped some of the concept (thanks to this forum) about epinephrine- and that which I've learned has been very useful yet I have not yet grasped the high norepinephrine and it's role in POTS - (Nicole's norepi is high - her epinephrine is high too). I only know that the body often sends a lot of norepit out to people with POTS. And sometimes the same with dopamine. And from the little I've read I can see how dopamine can possibly wreak havoc too. I plan to research dopamine more and if along the way if "grasp" the norepinephrine thing- I'll send it along to you. Meanwhile thank you so much for your thoughts. I can't even begin to tell you how touched I am for your offer. Best Wishes, Beverly
  5. Emily, I am so glad that you responded to my concern and inquiry and I would love for you to continue where you left off- and tell me more about yourself. I also debated for a while whether or not to privately e-mail my questions to you but like you I think that others can benefit from a discussion like this. And no you were not at all rambly. It certainly sounds like you do have a lot in common with Nicole. I'd like to know how long you've been sick and if you ever have periods of better "wellness" and what kind of doc you see and much more. I think it is so wonderful that you are wise enough to know the power of keeping your friendships alive. As I've said in a previous post Nicole has to reach out sometimes to make "it" happen with her friends. Some contact her on their own and come over but sometimes/ sometimes often she has to do the work to make it happen. But she does it. Last night she called the mother of a good friend who moved away a few months ago. The mother is @ 60 and got MS when she was 25. She (the mother) has known and loved Nicole for many years. Nicole has never called her before but received "word" from her intuition to call this woman. It was one of the best things she has done for herself. This friend's mother who has been wheelchair bound for years offered wisdom and encouragement. The best thing she said is that Nicole has an illness but Nicole should not become the illness. That really struck Nicole in a deep way- it was excellent advice- wisdom, Nicole said. And Star382000 I am glad that you joined in as well. Moms worry but it's not good for our loved ones (like you for instance) to take on the burden. It's not your "job" to worry about your mom even though that's a tall order for someone who is compassionate. As I said Nicole works on this too- to not feel guilt or to not take on the burden that she has to protect me. It's not easy for her but she works on it. If you are sick your energy has to go into finding ways to deal with what is going in your body while trying to find whatever answers might be out there for a better life. It's late now and I will rest for the night. I'll check in tomorrow afternoon after I see Nicole. Take care, Beverly
  6. blackwolf: Thanks very much. I will definately check out the sites you mentioned. Beverly
  7. Hi. This question is about dopamine and low sodium, etc. and nausea and some information I found. I hope I can my pose my question properly because I am tired. But first: Besides extraordinarily high epinephrine and norepinephrine number Nicole also had a extraordinarily high dopamine levels. We are finally learning (best we can) about the epinephrine and the norepi and how Toprol can block the effects of at least the epi. So now for that reason- epi- adrenaline-y feelings and the high blood pressure and the standing racy heart, Nicole is beginning to take Toprol (in the teeniest, weeniest smidges to start which is okay -at least she's taking it and she will titrate up if she can tolerate it) Nicole is still very dibilitated and it is tough for her and scary. However in tiny, tiny ways - a few things are better- but really- in tiny ways. But better is good even if it's tiny. Now I found this interesting information (below) and I am trying to understand about dopamine and I am wondering it there is a drug or treatment that any of you use to reduce it. That is of course if this is even an issue with any of you - high dopamine. I cannot even remember where I found this excerpt even though it was today ( I lost track of the site) Nicole's blood pressure drops when she stands. It would normally be low but with salt and licorice and fluid loading it got high in the supine position (raising the bed helped but it is still high) Anyway here's the quote: {"One complication of high blood pressure can be hyponatremia (or low sodium in the blood ) This can occur because of two reasons. The first reason is that during crisis the patient has high blood levels of a substance called dopamine. Dopamine has many effects-it raises blood pressure, causes nausea and it also causes the kidney to increase its excretion of sodium. The second cause of hyponatremia complicating crisis is due to the heart falsely interpreting the reason for the high blood pressure. The heart thinks that the patient has too much fluid in the body and so it increases production of a chemical called atrial natriuretic peptide or ANP. ANP helps the body lose salt and takes water with it so that the result can be dehydration and hyponatremia."} Anyway Nicole's pressure went from lower to higher since she got on licorice and lots of salt (and that's why she's one of the reasons she's starting on Toprol) but when I read this I see the possiblity of a catch-22- because Nicole has such high levels of dopamine show up in bloodwork. Nicole always has nausea which is mentioned in the article and still isn't retaining much salt and fluids except for a minimal amount Anyway if anyone could shed light on any of this dopamine talk or has had their doctor speak about this subject or has recommended a treatment, I'd appreciate any help. I hope my question is clear enough and not sounding like a lot of mumbo jumbo. Thank you Beverly
  8. Dancing Light, I think that this is a great discussion and I've been thinking a lot about it and a I've been thinking a lot about you and your mother. You've tried to get your mother some help and I admire you greatly for that. And I know it would bring you much comfort and relief to know that she had a place to turn to for support and advice. It's certainly a very natural and loving response to her needs. Yet I think my main question is -I wonder how all your concerns for your mother impact you? What do you do with your worries about her? Nicole, just like you have for your mother, has much compassion and empathy and concern for how her illness impacts me. I don't want Nicole to get all wrapped up in how I am doing because she has so much on her own plate- and I want her to put her energy in just trying to get through her difficult days in this relapse so that she can get better. Yet I know that she has concerns about me. We've talked about it - occasionally she brings it up. She is very perceptive and sees what's in my eyes and if I'm tired. I know how my caregiving helps her and I know how it impacts her. If you don't mind me asking, what are your present difficulties and limitations? I studied your "signature" and it seems that you are able to be fairly active at home and that you love movies. Do you go out to the movies? I read over some of your posts but could not really get a feel for what your life is actually like dealing with dysautonomia. It seems that you have friends in your life which is great. Are you able to leave the house and go out with them? I hope you don't mind me asking all these questions but I guess I've been thinking a lot about this subject and and about you and your mother and other caregivers as well and I am trying to put a picture together- maybe to see if any solutions comes to me. Also I'd like to know a little bit more about you since you are so close in age to Nicole. Best Wishes, Beverly
  9. Jessica, You truly did your very best within a very tricky, emergency situation. Those IV solutions they gave to bring down your heart-rate were necessary. You shouldn't feel at all guilty. You had to get your heartrate down. I'm just feel badly for you that you are having these difficulties. And hopefully as you move along in your pregnancy all your difficulties will alleviate. It's a rough time- thankfully you have a good support system- your parents sound so very wonderful and of course there is this forum. Support during a rough time is key. And maybe a standing order of IV fluids?? Take good care, Beverly
  10. Emily, I think you brought up a great point about privacy. I had recently checked into the NDRF site and found the caregivers discussion group only to realize that it had petered out. Maybe that is because it becomes a delicate situation for one to speak right out the "open" about someone they love and how their illness affects them (the caregiver). I looked for the exact thing you tried to find for your Mother- support for caregivers of an adult child. But like you I ran into limitations. I could only groups about caregiving for elderly parents- lots of those groups. It's even hard to find a book about this. Anyways- as a caregiving parent- I thank those you who are giving this so much thought. Beverly
  11. Steph, I don't think it's a wild thought at all. As a mother, caregiver I think it's a great idea. I was already kind of wishing for such such a forum. Just don't know how to set such a thing up or if I would have the energy right now to be a moderator or administrator of such a thing or the time since so much of my energy and time is being directed at caring for Nicole. And then I "collapse" when I have a break because I have some of my own health issues unrelated to dyautonomia. Yet just this morning my husband and I were saying that we don't know anyone who is going what we are going through. It would help to talk to others. Thanks for bringing this up. Bev
  12. Hi opus88, About chronic swollen glands- and growing up with a smoker- and then learning how allergic you are to smoke and now dealing with possible mold and suddenly your glands are more pronounced I wonder if you have ever had your IgE levels checked. It's the allergy/ histamine barometer which maybe has already been discussed in this forum before I came along. Nicole's IgE levels are always really high which finally a doctor wants to look into as soon as she is well enough to get all these tubes of blood drawn that he has ordered. Histamine, I learned causes dilation of the blood vessels- and I wonder if this sometimes plays a part in Nicole's dysautonomia. Yet I also read that the IgE levels can be high without histamine circulating if the body is in disarray (like it would be with dysautonomia) and therefore everything is thrown off. By the way- about mold- an allergist years ago told me to stay away from moldy things and one of them was cigarette smoke because the tobacco burning puts out mold like the way burning leaves or burning old wood can. Incidentally my father smoked lots (unfiltered Camels) and I kept on getting and getting bronchitis (which I later learned can be caused by second hand smoke) and when my father stopped smoking the bouts of bronchitis came to an immediate halt. I know this might not answer the question as to why you had chronic swollen glands as a child but I thought I'd just mention it. Anyways - its just some food for thought-about allergies- and swollen glands -although the dysautonomia flare ups could indeed be primary culprit. It's always a guessing game isn't it- the appearance of symptoms and then the way they wax and wane? This is what I have learned over the years from things that happen to Nicole. Nicole also uses the Vit. C crystals (like powder- mix with water?) when certain circumstances call for it. But she does take C in a multi daily. Thank you so much for asking about Nicole - she is coming along in smidges. Yesterday she said she was able to sit up a bit in the afternoon for the first time, albeit just for a couple of minutes. At night she can sit up a bit more but she cannot sit up - to get to her computer. Also she said that she feels like she is accumulating a bit more fluid by mid-day instead having to wait for night-time. She has a long ways to go and still experiences little mini-set backs especially from overestimating what she can do ( which are tiny things) and she is particularly learning that she should not bend over or bend down as that will set her back - she is really fragile still. I told her that is on the list of things to avoid. I ordered the book at the store and upon browsing through the index I could not find the words "cell salts". So I contacted my nephew who is just beginning a practice as a naturopath and he is looking into them. In the meanwhile he recommended something called natrum arsenicosum- a table salt which I need to look into and order from somewhere if we decide to use it- Whole Foods doesn't carry that either. My nephew said he'd ask a couple of his colleages about your cell salts. Take good care. I hope your throat symptoms begin to improve soon. Beverly
  13. I'm glad your throat is getting better. Perhaps you may have indeed been exposed to mold with all that "de-construction" and open walls, etc. It makes sense. Mold related issues can include sore throats and swollen glands, etc. from all that I've read. Mold can make people have all kinds of symptoms. Maybe you should be on that Vit. C at the very least as it sounds like your resistance was down a bit - to have had those symptoms and the belly-button thing. By the way- about the belly button thing- nothing is ever weird in our neck of the woods unfortunately with all the bizarre thing Nicole has experienced. By the way Nicole always has swollen glands everywhere and occasionally she has a sore throat. Hope you continue to improve. Best Wishes, Beverly
  14. Ernie, I want to tell you what Nicole did and how it is helping her. Nicole was feeling very lonely too during the day (her boyfriend works during the day) and her father and I visit with her but we can't be there all the time and when we are not there she is lonely. Since this second relapse within a relapse came about, Nicole hasn't even seen the light of day in that she has not even been outside. She has been bedridden except for bathroom trips. Where were her friends? she wondered. She was always there for people- that's the kind of person she is- nuturing, a listener type when her friends needed her. She felt let down. Anyway recently she decided to call these certain friends to specifically ask them if they would come and see her. This is new for her to ask people to do something for her. Because she is so used to doing for others. Anyway she bit the bullet and made the calls and got positive responses from some of her phone calls and now she has had people, besides us coming over. Nicole is still alone more than she'd like and some of the time she still has to initiate the visits from her friends. But they come when she asks. Also it could be that prior to this she may have given inadvertant signals that she was too tired. And maybe her friends felt they shouldn't bother her. But now they do come and sometimes she has to sleep when they are there but she just wants a human there. Anyway as I said a few sentences ago she is still alone more than she'd like and her therapist (her therapist comes to her house) said for her to call even more people. So Nicole called the church and the local Zen Center. Yesterday someone from the Zen Center returned her call and said they would like to come and and see her. She doesn't know the person but she is okay with that. I read what you said about calling around and finding volunteers - and you have found one to drive you to appointments. And one to help you write your biography. How lovely that you are working on your biography. That must be very cathartic and enlightening even though you need some help to do it. And how nicely it worked out that you phone calls brought results. There are some lovely people out there who do volunteer work. Yes, it doesn't seem right that someone who is ill or who has suffered losses should have to be the one to reach out-. But maybe that is the way human nature is- strange as human nature can be sometimes. The most important thing is that your phone calls have brought results. And to have people around is good for the spirit. For you to post on this forum and express your feelings is so important because you see how you receive empathy and support and compassion. By the way you express yourself very beautifully and clearly. Best Wishes, Beverly
  15. Jessica, I'm so sorry that you are having a difficult time. As was mentioned already the early stages of pregnancy always bring about changes. Lots of women- very healthy women get tired and feel differently. There is a very good chance that once you get past the first couple of months or so you will be feeling much better even without your meds. Also there is some other good advice already posted here about diet and fluids and salts and keeping up with these things. Keep posting and let us know how you're doing. I will keep good thoughts going for you. Best Wishes, Beverly
  16. Hi Steph, I wanted to thank you for passing along this wonderful, long, excellent article. I finally was able to print it up and read it today. Although I had previously read a small bit of it from another source- MOST of it I had NEVER SEEN before. What a superb detective you are to have come across such a useful, helpful article! It is very informative yet easy to read. I really like easy. It is just so validating and so much more. I love the part where Dr. Bell (or was it Dr. Streeten?) speaks to the hypovolemia and that hypovolemia is something that nobody should dare refer to as a psychosomatic symptom. Anyway I plan to read it again. I appreciate anything helpful like this because this illness is so complex and I want to learn about it as best I can. As the saying goes- "Knowledge is power." Best Wishes, Beverly
  17. Just to qualify something. When I said licorice chews I didn't mean candy but the kind one would get in a nutrition store- like Whole Foods, etc. They are like chewable tablets. My daughter had some stomach pain/discomfort and heartburn and nausea and these things seemed to help her. It is a benign thing to take and there are no guarantees - as everyone is different-but all I can say is that it did give Nicole some relief. Beverly
  18. Ginnysgirl, My daughter first became dramatically symptomatic in 1996 at the age of 20 (although we are now looking back to when she was a child and see signs going way back). She is presently in flare up which is keeping her quite disabled. At first Nicole could not eat because she had nausea and anxiety and felt adrenaline-y. She was losing weight. She hardly ate anything but did force down a banana in the am and drink some chicken broth. She is eating better now as she improves very slowly yet is pretty thin but hopefully she will regain her appropriate weight over time. What seems to be starting to help her is adding salt to her diet in addition to all the water. She drinks salt water and adds salt to her food. Also she drinks the salt water with the food. She takes between 12-15 mgs celtic sea salt per day = @ 5800 mgs of sodium. She has terrible brain fog and cannot focus on anything. But this will improve to a degree as her flare up lifts. About two weeks ago she added licorice to her regimen and that seems to be helping a bit too. Gradually if she remains on this course she should keep improving albeit slowly. She has to rest a lot and we help her by bringing her her meals. The florinef isn't working thus she is using the licorice. With salt and licorice one really must watch one's potassium as it can be drained by such treatments. Nicole takes tons of potassium. Ginger tea is a great idea. Another thing that has helped my daughter when her stomach was upset is licorice chews but the kind that is deglyzzerized (as opposed to the capsules that raise blood pressure and help the body to retain salt and water which she also takes.) As a mother watching my daughter's life be interrupted like it is I can relate to how you must be feeling. It is difficult to watch our children suffer- no matter what the age. This forum is a great place. I have learned so much in only 5-6 weeks. There is much intelligence, wisdom, experience, support and compassion here. You are never alone when you come to this forum. By the way is your daughter taking salt pills? Although beneficial to some it can cause stomach pains and nausea. If she agrees to take the salt water she should have it with food if she will take the food. Otherwise you could try lots chicken broth- which is loaded with salt. We use the Pacific brand which is organic chicken broth and has 580 mgs sodium per cup. Keep us posted and best wishes and prayers to you and your daughter. Beverly
  19. Blackwolf, Thank you so much for asking your doc about the Florinef alternative. You are also looking for an alternative- wow - surgery- are you in the inquiring stage on that or have you gone further? Have you ever tried the licorice- you say you are also looking for an alternative. Nicole has just been going up on the licorice dosage. I know everyone responds differently to meds and supplements but I will let you know how she makes out. Presently she is at @ 1400 mg of licorice and she thinks she might be starting to retain some fluid. She is still bedridden with lots of symptoms but maybe as she goes up on the licorice it might help- if indeed it helps her retain more fluid. She is still doing lots of fluid and salt loading as well. Today the nurse will go to her house for a blood draw- potassium check (plus thyroid and one other thing- can't remember the third). Thanks again for asking and getting back to me. I will search around for the possible Canadian generic alternatives and let you know if I come across anything useful. It sounds you are doing better from all that difficult situation -as you said previously you felt as if you were finally moving on with your life- does it feel like you are on your way? And your daughter? Is she okay? Best Wishes, Beverly
  20. Thank you everyone for all your response. I don't know what we would do without all of you- I don't know how we did it before we found you. Best Wishes to All Beverly
  21. Katherine, Thank you for your well thought out response. I guess I always wonder if it's possible to find the underlying cause. It seems like there are so many possible underlying causes - where would one go to determine this. In the NDRF Handbook for Dysautonomia there are so many possible causes. How does one begin? It sounds like you have a phenomenal doc. I'm just curious - if you mind- did you find out what the cause of your problems are? What an awful time you went through at the your baby was born - I am so sorry you had to go through all of that- my goodness- yet I am so relieved for you that you got well and could take over mothering and enjoying your child. Your mother certainly sounds like a wonderful woman. She must have practically cried tears of joy when you got up and about. I know everyone is different but what do you think got you back on your feet and what keeps you on your feet? Do you have to be constantly aware of limitations so as not to push the envelope? I know I've asked a lot of questions -that's what I seem to be doing all the time- I hope I'm not asking too many. You are indeed so very kind and empathetic as everyone has been when I post a question. Thank you so much, Katherine. Beverly
  22. Thank you Michelle for the info on crotchless hose. We kind of joked about cutting the crotch out but maybe it's not such a joke after all. Sorry you had to come to those creepy links - yuck I can only imagine- anyway thanks so much for looking and suggesting that they actually exist. Beverly
  23. Nina, I'm glad that you're procedure is done with. Sometimes the waiting and thinking about such a thing can be the worst. I admire you for your sense of humor and your resiliency. What a good example you set for many. Hope you have a great day! Beverly
  24. One thing Nicole tries to be vigilent about now (although until about 2 weeks ago it was much harder and she was losing weight) is eating and taking salt and drinking. The drinking comes easy because she is so thirsty. Her boyfriend thinks that she is going through nearly a gallon a day. She takes in about 15 gms of Celtic Salt. She chugs some salt in water after eating. We make sure she eats at least three meals per day although her appetite isn't great. She highly salts her food. At night she eats macaroni and cheese - late- and drinks chicken broth with miso which makes if very salty. If she skips this "treatment" then she notices in the morning she feels crummier- more adrenaline-y. So when she does do it she notices a difference. So she really tries to do that and for the most part she does do it. I think this point thing is important because she spirals backward from doing more than she should be even though she didn't think what she was doing was that big a deal. So trying to measure the exertion factor and assign points might really help. To answer the question honestly - Yes it is unbelievably, extremely difficult to watch Nicole suffer in one of these relapses. Nicole's father (Steve) and I suffer tremendously that such a thing has taken over her life and all that losses for her that go with it for. There are many times when it feels like it is more than we can bear. Even when she is in a remission- we know how quickly and how far she can fall so she always is like a tower of cards. Thank you for all your kind words and and great advice and offers of prayers. I am praying myself that this licorice works and that it helps her better retain all the salt and fluid she is taking in. I will keep you informed about it - if it works- and about the saline- if she does go back on it- if her doctor will let her go back on it. Thank you all so much, Best wishes, Beverly
  25. rita and merrill, Thanks for the tips about the thigh highs. Maybe that is a smart way to go. Less struggle and no bathroom problems. Beverly
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