Nicole's Mom

Thank you all for your replies. Nicole has taken the beta blocker for 5 days and it has only been on a smidge of a crumb. She is so sensitive as many as you are to drugs. It's how she started on Zoloft with the smidge of a crumb routine and slowly titrated up- eventually making her way to 50 mgs. She is taking Toprol. And has taken it consistently for 5 days in a row, starting last Friday. (If I wasn't so sensitive myself to drugs I wouldn't believe that Nicole could be so affected by such a tiny dose. But I too am trying to take something new myself and I too am experiencing weird, side effects and I am taking 1/8 of the lowest dose available of this drug. So it's lucky for Nicole that I, her mother, "react" to tiny doses of drugs or I might not suspect that her reaction could be from a drug at all. She was doing fairly consistently "well" before the Toprol. Even I have been told to try and get past the side effects of my drug by staying on it). Rita, There were three times out of 5 when Nicole felt really crummy from the Toprol. The first time was either Saturday of Sunday morning and I read to her your comments from a long ways back(I copied down the comments from that post) when you said how horrible you felt for about 10 days and some of your friends and family tried beta blockers and had a hard time with side effects and you advised Nicole to hang in there. What you said about yourself- the symptoms you experienced was very close to how Nicole felt on that particular day (either Sat. or Sunday) the day I read your comments- you had said your legs felt like lead and Nicole said hers felt like lead plus other symptoms you experienced. The prior day Nicole felt weepy and I read her Michelle's reply (from a ways back) about how at first it made her weepy. Reading what each of you experienced to her allowed Nicole to force herself to contiunue. This morning she awoke with anxiety and adrenaline and sort of something a bit loose in the bathroom department. She rarely has bathroom things. But maybe anxiety could be the cause of that which was a symptom she had today and she hasn't had that in quite a while. Katherine- thank you for you response and the link to the info. It's very helpful. I was looking around for more info so when I am done adding this reply I will click your link. One of the main reasons Nicole is taking it- is because she becomes adrenaline-y when she stands up for too long even though normally it has abated. When she went to that doc's office on Sept. 15th and really overtaxed herself from the trip the first symptom of the cascade downhill was loads of that adrenaline feeling. So that adrenaline- epinephrine/ norepinephrine response appears to be a culprit in her case as it is in many POTS patients. The more I educated myself about how beta blockers can cut that business off - the more it seemed like she should be on one. Without the beta blocker, it's almost like Nicole is walking a tightrope without a net. I am not a doctor but just an observant mother watching Nicole over the years and listening and now reading literature and comments from all of you on the forum and it seems like Nicole is the perfect candidate for 3 reasons. And the thing you said about tremors-Katherine, Nicole does have this to a small degree and I know you spoke about yours in a topic you had going. violahen- thank you for your response. Interesting how you perceived what was happening to you as a rebound effect- and you experienced the adrenaline-rush thing. I am curious. Did you take the beta blocker consistantly or periodically- I am wondering to evaluate the rebound thing. If you took it consistantly was it that your body was rebounding in between doses? Also did you ever get past the reaction of rebound adrenaline-rush. Was that at the beginning of taking it and something that finally abated? Because it sounds like you stopped it because it slowed down everything too much- that is if I'm reading it right. Thank you all again. Beverly

Thanks opus88 for your suggestion re: using the beta blocker for an as needed basis. The thing is Nicole was wondering if the beta blocker could paradoxically be causing the adrenaline since the adrenaline has abated and now is suddenly back upon using the beta blocker. Like for instance- I am sensitive to meds myself and have wierd reactions sometimes the opposite that it would be intended for- like xanax could make me wired instead of tired. So when Nicole started up again with the adrenaline- the only thing new she added is the beta blocker. Thanks, Bev

Nicole has started back on the beta blocker- which is where my question will be. She has still been coming along slowly but surely in her progress. She has been able to engage some reading and writing in the afternoon instead of just one hour late at night. She has been more active- in several ways although still needs to lay down. Much is better - albeit in small ways- but steadily better. She has been feeling better and moving forward. Now, one of the big things is that the adrenaline-y feeling has mostly abated (except for when she stands too long). So because the wired/ adrenaline thing is gone (when she is not standing)- she has been able to get some deep sleep- real, restorative sleep- for 10 hours a night. Recently- like 4 days ago she tried going back on the beta blocker so that when she stands up she won't have that adrenaline when upright, and so her heart won't race, and to bring down her bp and because it has helped so many of you feel better. But for the last two mornings the adrenaline is back and has interupted her lengthy, restorative sleep. Like just now she told me she only got 5 hours of sleep last night. She only takes a smidge of beta blocker. Two nights ago she got 8 hours instead of 10- sleepwise and then last night -5 hours and last night was when she increased the bb by another smidge. So the question is - do you think that the beta blocker can paradoxically have the opposite effect- like bring on adrenaline instead of reduce it? Could wired-ness be a side effect?? Anyone experience this from a beta blocker? Thanks so much, Beverly

Steph, All those symptoms can be scary. When the body is in disarray so much can occur in so many forms. It isamazing- how much can go on. I'm glad to know that MS has been ruled out. You suggested that you might get tested for Lyme which I've mentioned on the forum - that I have. Because of all the Lyme activism work that I 've done- I was in contact with many Lyme patients. Many of the people I've spoken with were misdiagnosed- with something else. This is a huge problem in the Lyme arena. I personally know of 8 people who have Lyme that were originally diagnosed with MS. The symptoms are similar. Lyme is called "THE GREAT IMITATOR" and for good reasons. In the literature for Lyme there is much about misdiagnoses- many have been diagnosed with all sorts of things when they had Lyme. Lyme can also cause dysautonomia symptoms according to our brilliant infectious disease doc who unfortunately moved to CA from RI. She had Lyme patients who also had dysautonomia. Anyway- this is for you or anyone with POTS who wants to get tested for Lyme. Just like you'd go to the best, most knowledgeable POTS doc - because you want someone who understands the entire scope of the problem- the same is true for Lyme. There is a huge medical politics war going on in the Lyme arena and because of this there is lots of misinformation is out there. So you would want to see what Lymies call a LLMD = Lyme Literate M.D. This would be an M.D. who specializes in diagnosing Lyme and treating Lyme and one who knows of the labs that are best to send specimens. These docs are less apt to rely on tests that are known to be unreliable and more apt to use the tests along with what the patient reports to make a clinical diagnosis. Anyway- I actually have been holding back talking about Lyme. But now that you mentioned Lyme on the forum- I could not hold back from putting my two cents in. Later on today or tomorrow - I will report on two places one can go to find LLMD's if they wish to pursue this. I just want to make sure I have my sources correct before I post this. Take care, Steph

Wow! that's a lot, Stacey. Here's what we had to do- in a similar- sort of situation. Before Nicole had this last relapse- my husband had already been dealing with issues regarding his failing mother and it was getting more and more difficult on my husband. My husband's sister who has the energy of twenty people insisted that the mother not go into any sort of assisted living and she was calling on my husband to help in ways that required lots of time and effort- he was taking vacation days and thus using work time to compensate for where there was no assisted living arrangement. He works full time and has his own limits to the stress he can endure. Then Nicole had this relapse and this really consumed our time as you can well imagine if you have been reading our posts. My husband has NEVER been able to say no- ever. But he finally had to. He told his sister that his own plate was way too full and he was also griefstricken and stressed and worried about Nicole and explained that he could not help anymore. He explained until the sister understood. Eventually she understood and no longer called for help. In fact - sometimes now- very occasionally- she even offers to help us and Nicole while doing all the extra things for the mother. But recently- even she reached her limit and began to allow someone to go into the mother's house for several hours per day to help the mother. And on weekends - the sister takes the mother to her house to stay. Eventually the mother will move in with the sister- once an addition is built. But it was her idea to refuse assisted living for the mother and to take her in. My husband felt a great relief when he learned to say no. And to repeat- you've got to know my husband- he has never, ever been able to say no to anyone ever- he always pitches in. But he did say no and he feels fine about it now. He feels unbelievably relieved to not get phone calls to help with his mother. And by the way- he is a totally devoted son but he ony has so much energy. The ony thing he does is help his mother with all her financial things. Writes her checks and pays her bills and every Saturday he goes and gets the mail. This is stressful but this is what he can manage as there are so many extra jobs to do now that Nicole is here with us. He has to help me to help Nicole because I can't do too much because of my own chronic illness. So anyway- you have so much on your plate, Stacey and you have to take care of you first and foremost. The bottom line is that sometimes we have to explain and explain until others get it even if at first you feel badly. But you mustn't feel badly or guilty. You are doing nothing wrong by being realistic about your own situation. You will find that by saying no- the other people will find a way to manage without you. Have faith in this, Stacey. Take care, Bev

Thanks to you too, Steph, I will do a search to get those tapes. Bev

Thanks very much Nina. Much appreciated. Beverly

Steph, I agree with you regarding testing. For instance in one test the reference range could be as great as 4-600 and if you end up as low as 6 or as high as 585 - many a doc won't even imagine that maybe - just maybe - this is something to look at further. Plus labs differ from one another which could mean that you could be outside the reference range but the technique or the hurriedness of the lab worker might create a false "normal". Also if you are really low or really high but still within the reference range the lab sheet won't indicate an "L" or an "H" and the doc- being in a HURRY- thus scanning ONLY for the L's or H's only- will miss that there is a significantly lower or higher number within the reference range. Another thing is that you could actually be OUTSIDE the reference range and the doc might say - well you are "JUST" outside the range so there is no need look further -yet maybe it is just the situation that he/ she SHOULD look further. Also regarding potassium- that can certainly be tricky. One could indeed have symptoms of low potassium if you are a low normal in the test but as long as it appears as "normal" on a piece of paper then as far as some docs are concerned - it is "normal" and thus he cannot imagine what one's symptoms could be from even if they are classic symptoms of low potassium. If you say- "but I know my body- I know that I get these symptoms when my potassium is on the lower side of what is considered normal" this statement might easily be dismissed by certain docs as docs often cannot imagine (because of how they were trained ?) that someone can actually "KNOW" their own body. Back in the olden days before tests- docs had to use their noggin more and had to listen to the patient in order to assess what the heck was going on. Tests certainly have great benefits and can save someone's life in fact, yet on the other hand a patient can easily fall through the cracks by an improper or narrow interpretation of the test or if the lab is sloppy or if the doctor has narrow thinking, or if there is a low-level disrespect (or high level disrespect) for his/ her patients in general etc. etc and omits the patient's "anecdotal' experiences in his/her assessment of the situation. I certainly understand your frustrations, Steph between Nicole having POTS and me having Lyme (Lyme has a medical politics war going on). There are lots of hurdles to jump when one has an illness that is poorly understood and so multifaceted. And when you are really tired and really want answers- the hurdles seem all the higher. Having expressed all of this negative stuff- Steph, it is obvious that you are strong, determined, and highly intelligent which is in your favor. I'm so sorry that you have to go through all of this b.s. but you will prevail when all is said and done in getting the right docs and the appropriate care. I'm just so sorry that it is so hard for so many reasons- can I ever relate!! Meanwhle I am so glad for you that you have this great cardiologist (who is also so "dang cute") and that you have Dr. Grubb as well. Take care, Bev

Nina, What a wonderful accomplishment. What a nice feeling it must be for your "plate" to be lighter as you described. You will have to keep us informed as you move through the steps of your dissertation. Meanwhile have a wonderful, relaxing vacation. Nobody deserves it more . Beverly

I am wondering if there are ever scientific conferences for dysautonomia. I have attended such conferences for Lyme where researchers and docs present their newest knowledge to one another and lay people are also allowed to attend. At the Lyme conferences that I attended I was able to introduce myself to docs/ researchers and ask very specific questions. You can learn things that sometimes you can't find in print. Anyway- just curious. . . Beverly

Ernie, That shopping experience had several layers to it that made it difficult for you. Never when you got sick 4 years ago did you expect to look back now in 2004 and see so many losses as you described in your post. To choose go out to get some clothes because you like to look nice when you do get out meant that you had moved onto a certain level of "acceptance"- wanting to look nice instead of just settling for wearing your older clothes is a sign of moving forward- getting on with your life. To get to such a point takes a lot of spiritual growth. To actually BE out there in the store knowing that while you pushed the cart and your husband was pushing you probably felt quite surreal to you- strange- new- maybe reminding you that although you had the courage and perserverance to make such a trip it still had elements of sadness because of all the losses- a mixed bag. And here you were doing your best- trying to make the best of your circumstances and you encountered a person who was so invested in herself - a woman so fixed on her own circumstances- a woman who only cared that nobody cut in front of her in the line that she was BLIND to your situation- BLIND - to your wheelchair. You answered her comment properly and I'm glad that she apologized and that an employee came over to "rescue" you from that woman and that uncomfortable experience. I am also so sorry for the angst that this situation caused you. It sounds like your shopping cart was full of clothes and I hope that you were able to leave the store - after trying the clothes on- with some nice things that will make you feel good the next time you go out. That was a lousy experience but I think people like that are rare. I think that you will find - as you go out more and more that people in general will be very kind- more than not. It's just too bad that during this big step of you going "out there" such a thing had to happen. Recently a young neighbor gal- 26 years old- who own the house next to us- someone who I had befriended- someone to whom I have been very kind - a friend and a mother figure to her- she said something very heartless, hurtful, and cruel regarding Nicole's illness and dyautonomia patients in general. My husband and I have experienced some insensitivity from people not "getting it" but this "thing" from the neighbor gal was unbelievable. I don't know what to do with it- what she said to me. I have been mulling it over - trying to get up the energy to vent about it on this forum. Sometimes these things happen- and it's a shock. Mostly people "try" to be kind and understanding. But when someone is cruel - it can feel very violating. Meanwhile- by reading these posts for you today I have just learned that you have completed college. What a wonderful accomplishment. I do hope- very much- that in time - you find ways to improve your health so that you can get out more and more. I will keep you in my prayers. Take care. Best wishes, Beverly

Steph, I read your post first thing this A.M. and only now am I able to reply. All day I've been thinking about what you went through all day- I couldn't stop thinking about it. I have been so angry about how you were treated!!!! First of all let me tell you HOORAY for telling that idiot that all the doctors who treat chronically ill patients like psych cases should go get a psychiatrist themselves. Secondly- if we had 5 dollars for each and every bad behaving doctor throughout the ages who told a patient (usually of course it's women they act this way with) that she needed a psychiatrist instead of the doctor just believing the patient and thus dealing the issues/ symptoms at hand there would be enough $$$$ money $$$$ raised to fund all the research needed to wipe out every illness in the entire world. That's how often this has been done- bad behavior and psychiatry comments. This doctor sounds like a typical narcissist/ easily ego-injured brute of a doctor. And if you had more energy I would tell you to file a complaint against him. Luckily you can come to this forum and vent. Why can't these docs just be respectful. Anyway- I am so sorry that you went through this. I wish we could all go to his office and picket outside his office in protest of his behavior. Sorry. I always stay out of angry at doctor posts but I've reached my limit. Just remember that you are a highly intelligent woman who is very educated about yourself and your illness and and you do lots of research and you help so many others and you know your body well. Anyways- my advice is to continue trusting YOU and I hope he becomes history. And meanwhile -do what you always have done brilliantly- thoughtfully and methodically go about seeking out answers to find out what you need to do for yourself. I have a lot of admiration for you Steph and the way you operate. You are one really, really special gal. Take care. Bev

I totally agree that the research articles can be biased depending who has funded the work . But it's fun to see all the things you come up with. Bev

Butcher's broom according to the info in What Helps can also act as a diuretic. If you read about it in herb books it is often referred to as a diuretic. I have thought about the pros vs. the cons in someone who has hypovolemia and is working hard to build up plasma volume. Personally, I would not want Nicole to take it because of the double edged sword thing. Beverly

Gena, I'm glad the Klonapin didn't make you spacy but I'm sorry that it brought you no relief. I know you are sensitive to drugs but I know Nicole did get relier at a higher dose. But if you don't want to do this and because you are all adrenaline-y feeling and anxious- maybe Blackwolf's suggestion about the beta blocker- low dose might help since it's supposed to block the adrenaline and the anxiety. Maybe someone already mentioned this already but doesn't Norpace do the same as well? I don't know how Norpace affects low blood pressure though. I only read that it helps to cut into the adrenaline thing. I hope you get this figured out soon. Good luck with your doc today. Bev

Blackwolf, I'm sorry that you are having such a difficult time. Between the pain/ stiffness and the not sleeping and being so freezing - no wonder you are so uncomfortable and don't feel like eating. Everything is going on at once. I wish I had an answer for your pain - I have heard some wonderful things about that glucosamine that Gena spoke of. I have a friend who had terrible stiffness and pain and it really helped her. And I've read great things about it. If I was freezing - I would soak in a warm tub like tearose suggested. I would also have someone go and get me an electric blanket and I'd put it on high until I felt nice and warm. The warmth could also help perhaps with the stiffness and pain. And maybe the warmth could help lull you off to sleep. It's very hard to sleep when one is cold and stiff and achy. I hope you feel better really soon. Take good care, Beverly

oops - edit : my answer is in your heart going wacko post. I hope you get some relief soon. Beverly

Gene, (edit: This is a blend answer to this post and your Klonapin question post) First of all you should never feel guilty venting about what you are going through because some have more problems than you. This thing that happens to you is of concern to you and you need advice and have every right to ask questions. I'll tell you why Nicole was taking Klonapin. She was using 1 mg of Klonapin 3x per day when she first had this relapse within a relapse. She was highly adrenaline-y and felt wired to the hilt all the time. It helped to calm down her ANS as she couldn't stand that feeling like she drank 600 cups of coffee. She did not have any side effects from it. I don't think she uses it so much now because the adrenaline-y thing has improved a great deal and she doesn't really need it like she did. I think she uses small doses as needed. About the crazy arrythmias/ crazy tachy- whenever this has happened to Nicole - like if she was awakened with such a thing - I mean like really, really fast beating so that she couldn't even count her pulse- the first thing (learned from experience) that was suspected was low potassium and in her case a blood test would confirm- not to say this is true for everyone. Upping the potassium helped relieve this problem instantly almost. Also I'm wondering if when you wake up with the arrythmia and then on top of it your heart begins to pound - I'm wondering if some panic about the situation is involved. That could make your heart pound. You were wondering that yourself - if anxiety might be aggrevating the problem. It seems like a good idea to check with your doc and do the holter just to gain some knowledge about what your heart is doing while you sleep. Then you can find out if your heart rate stays at 45-65 or if it drops or not. If it doesn't drop while you are sleeping like you are afraid it might do then that particular fear will be alleviated and you can put it behind you and go to sleep without that worry hanging over you. Meanwhile- you could just take a smidge of the Klonapin to start off with to see if it's workable for your system. If okay- you can smidge your way up to where you'd like to be. Take care, Beverly

Dawg Tired, Thank you so much for sharing your story. My heart goes really out to you. Because of what I see with Nicole I can easily understand your struggles. It sounds like you really got a real run around and then to have that pacemaker put in and not have the results you hoped plus on top of that to have pain there seems so unjust. You have had your share of hardships which I can relate to as well. It also sounds as if you have a wonderful church community - and that your church brings you much comfort. Plus that the church men finished off that room where you can relax and watch birds speaks volumes of how caring your church friends are as people- and how much they care about you. No wonder you try to go to church a much as possible. It must feel like you are wrapped in many arms when you are there. It sounds as if you love birds. My husband's avocation is ornithology. He loves birds too and in fact teaches a bird-watching course every Spring. If you ever see an unusual bird that you cannot identify send me a description of it and my husband will be able to tell you what it is. I am so happy for you that you finally that disability and that the back pay will pay off your mortgage. You obviously had to wait a very long time - 2 years is a long time- but at least something good is coming from it. To be without a mortgage is to have less financial stress. And I hope this takes a burden off of you- to have some income plus less expenses. I am so glad to have this communication with you and that you have told me so much about yourself. I will keep you in my prayers and I will keep a close watch out for your posts. Thanks so much. Regards, Beverly

Blackwolf, I am so happy for you that you feel so good and so relieved. Now that this ordeal is over maybe your body (physiological) will do some catching up to your feeling-good emotions. I think that's how it works. Now you can enjoy the holidays and play music and sing Beverly

Thanks tearose and rita for your kind comments. I always appreciate comments from everyone and am so grateful to have you all. I think that over time Nicole will heed many of your words of wisdom and hopefully as she grows stronger we can get to the bottom of some of her malfunctioning mechanics by learning from you all which are the best tests to use that benefit the patient the most. Also thank you Rita for answering the denervation question. I've seen that term "denervation" used so much and I never knew what is was. I hope this is one of the tests her POTS doc does. By the way I should probably put this in the other post and maybe I will but she is definately NOT going to do the mercury challenge test. Best Wishes, Beverly

Thank you Geneva. You cannot imagine how helpful your kind and comforting your words are. Beverly

Mary, I am so sorry for this newest dilemma that you are faced with regarding that medication Marissa has taken and now her ekg results. The stress is making you ill as well. It is so hard to not worry when so much is taking place and it feels like things are spinning out of control. The pain of having an ill child no matter what their age is so difficult. I will definately say prayers for you and Marissa that you will get some better news tomorrow from the doctor. Take care. Beverly

Thank you Dawg Tired for your response. That must have been awful when you were in that position. At the time were you really fragile? It sounds like it if walking 15 feet felt like an accomplishment. I'm wondering how you are doing these days Dawg Tired. Are you able to get out and about? If so what do you attribute to moving forward? What meds do you take? And have you gone through all the testing that has been recommended for Nicole to go through? I don't mean to ask so many questions but what are your days like? I have read over some of your past posts but I can't really tell. Tearose- Thank you again for your warm and thoughful suggestions. The sweat test sounds kind of grueling. Is it? Thank you for mentioning it. It could possibly be one of the additional tests her POTS doc wants to do. It seems like something many of you have gone through. He wants to do more testing when she is stronger. We are in the process of finding out exactly what he wants to do in his autonomic lab re: testing. She has undergone some testing there but he wants to do more. I think it would be a good idea to compare what he would like to do and is equipped to do compared to Mayo. I'd be curious to know how this sweat test can tell that you have denervation in your legs. What is denervation anyway? And is this what make blood pool? It certainly would be good to have such a thing documented. Tearose, I know that you have difficulties with meds so I'm really glad that the compression hose helps you with the pooling. I wish there was more that you were able to do to make your own life easier. When you ask does Nicole have a complete diagnosis I think you are asking if she has answers like is there denervation or not, right? And other things I imagine. It must seem to all of you as though we are not being complete with Nicole in hurridly looking for answers. But at this time her fragility is a huge issue. She does not bounce back like all of the rest of you do unless she is totally in a sturdy remission. When not sturdy, she spirals downward and downward and stays there from the least bit of aggravation. So if she were to travel or undergo tests it would have to be when she was really sturdy in a remission -when there is the least chance of severe repercussions. I know this hardly makes sense to many of you who have been through the rigors of the travel and the tests but this is the way it has to be with someone like Nicole. Perhaps the mistake was not doing more testing while she was in the last remission. None of us ever imagined that her situation would have downslid to this point. And actually - ironically- it was going to those 2 new doctors on Sept. 15th to look for answers- and hopefully treatments -the travel and the strain that made her drop six levels below the basement. She wasn't sturdy enough then to make that trip and now she is way less sturdy which is quite an understatement. Our job now is to keep Nicole from sliding backwards and to try to presently find any "answers" we can in the most benign way that we can find now and to keep nurturing her like we are doing and keeping her ANS calmer so that she can move along albeit slowly and surely like she has been doing. I know most of you disagree with our philosophy but we are learning that in Nicole's case we cannot rush things. To rush and to hurry her off here and there would be to act in her detriment. Naturally if she wasn't showing any signs of improvement and we didn't have faith that she would pull out of this of course we would have to reassess our philosophy. But she is coming along and now we have to continue having faith that this will continue. Sometimes it's hard to keep the faith and be patient. Anyway- that's all I have to say for now. Except to thank you so much everyone for your concern and thoughts. Everything that you all suggest are great suggestions and over time- we will likely travel all those roads. Beverly

Opus and Katherine, Thanks for your concern and help as well. Nicole will not do anything that will harm herself. Nor will we let her. She did speak to the doc today and he understands her concerns. So it may come down to the fact that the test might not be done at all in that she might take a smidge of one pill ( during the phone call he reduced the amount to 5 pills from 10- saying that this was a low test dose and said that the amount usually taken is 30 pills). If Nicole takes the smidge and feels anything from it - she will abandon the whole thing altogether. The last thing she wants is her brain in particular to take any more of a hit than it has already taken. Meanwhile I just remembered that recently in our state some hoodlum kids broke into the gas company warehouse and stole some mercury- a big drum of it. Eventually the mercury (drum broken open) ended up dumped in the driveway of an apartment house and the state tested all the people there for mercury poisoning. I am going to call the state and see how they tested the people. Thanks, Bev