Nicole's Mom

Katherine, I'm wondering however is there any possiblity that it could be a weak muscles? Like for instance when I am really tired or have overused my right arm (this is from residual neuro lyme stuff) if I bring a glass of water toward my mouth my hand and forearm will tremble in this way like I'm jiggling a doorknob in fast motion. It feels to me like muscle stuff- overused, overtired muscles. Also do you carry Giuliana around much? Does she like to be held often? Could you somehow be putting a strain on your neck muscles or maybe on a vertebrae? Meanwhile I hope it abates on it's own but if it keeps bothering you may indeed want to consider getting another evaluation from someone new. Beverly

Emily, What you told me about yourself is really very helpful. I really appreciate it as well as the other responses. Thank you so very much. Beverly

Thank you Ling and Meghan for your responses. I wish that you had better experiences to report - it sounds like you've been through some tough times and still are. I understand- believe me-as you know I see the problems in Nicole. Because of my own menstrual problems I know how inconvenient and extremely troublesome such problems can be. That is one thing. But then for someone to have such a difficult illness that is so tied into hormones - and then to read the posts here and see that there is no easy solution. And that treatments in themselves can cause ill-effects is very disheartening. I don't mean to sound negative but this POTS and periods seem to keep up this constant catch-22. And when someone is so sick how does one move along in health when they keep getting tripped up in this one arena. A 5 inch clot and an emormous amount of cramping says a lot. I know that everyone react differently to different remedies and drugs but that sounds scary. Ironically the reason Nicole went to begin with is that she was NOT getting her period as a teenager and at first a glib gyn said oh it's just stress- he didn't even look into anything - just said it's stress. But something didn't seem right to me so back then I took her to an endochrinologist who discovered the PCOS and that Nicole had hormonal imbalances. The doctor told Nicole that she must - absolutely must take the pill to get her period because if you are putting out estrogen each month but don't get a period it could develop into uterine cancer. Also I have to say that the two times Nicole went off the pill - the first time she went off - the onset of POTS came on within 2 months but she didn't see a connection until the next time she tried to go off she had a major relapse. Plus she learned of another gal who went off the pill and then that's when her onset of POTS came on. Anyway - thank you to all who have responded - you have given me some useful information by sharing your own experiences. Beverly

Jessica, If ginger is okay for the baby, I would suggest ginger tea. I use 1/4 tsp ground (the powdery type) ginger in a cup of hot water. Sweeten. It has a kick to it so that you blow your nose and clean stuff out. Also if you can do spicy foods make a cup of regular tea (decaf) and add about 1/8 tsp. cayenne powder. Sweeten. That will really make you blow your nose. Cleans you out pretty good. I hope you begin to feel better really soon. Beverly

Martha, I was just re-reading your post and I wonder if I might ask you to clarify something for me. When you first got ill with POTS you said you had heavy periods and irregular bleeding. I know there's also the perimenepausal situation that you mentioned. I feel like I am getting so personal - but I was wondering if you had menstrual problems when you were younger like the way your daughter has heavy bleeding at the age of 24. You've certainly really run the gamit in the past 2-1/2 years but I was just wondering about before that - were you normal- if you would be so kind to tell me. Thank you so much, Beverly

Rita, I literally had one foot out the door when I saw your response. You are just validating everything that I see in Nicole. It seems like we really need a "remedy" to help with the menstrual chaos. Perhaps that midwife knows of something natural. Whatever I learn from her via Nicole I will pass along- if it's anything new or good. And in the meanwhile maybe there are some links or things we haven't heard of that will show up in a post or two here. Best Wishes, Beverly

Martha, Thank you so much for your response. Wow you have been through a lot with menstrual problems. I am so sorry. I know how debilitating these problems can be. And now your daughter has heavy periods. It's so difficult. I had never heard of Jasmine. I will have to read up on it. You've tried so many things yourself. What kind of side effects did your daughter have on Seasonale? They must have been awful that she could only bear it for a month. It seems like in your case your menstrual problems kicked up after POTS came about yet you were also in a perimenepausal state. It seems there's is a loop. Hormonal changes makes POTS worse and in turn POTS exacerbates hormonal problems. I agree- Lupron has sort of a bad rap. You are lucky you didn't have any immediate effects from that. I am glad for you about this. I know a couple of people who did have immediate bad effects and it wasn't good. I know you are discouraged that it didn't put you into menopause- but that may have made another set of problems for you. I've heard of this first hand. Maybe that was for the best, actually. Thanks again, Martha, for your thoughts on this subject. I am now off to the grocery store and then to Nicole's for a few hours. Wishing you well, Bevery

Rita, Thank you for asking about the beta blocker. I just posted something new about Nicole- she has interrupted the taking of the Toprol because she was feeling so crummy - my new post will explain. I sure hope you can find the doctor you need. And you too Tearose so maybe you don't have to make that trek to Mayo. Beverly

I think to some extent this has been discussed before but here's the problem. It's about POTS and menstruation and while we're at it let's throw menstrual irregularities into the mix. Nicole has PCOS (polycystic ovary syndrome) which automatically means a constant struggle with her hormones to try and get them on an even keel along with menstrual irregularities. She has been to a specialist - who cannot offer much except that Nicole takes the Pill to try and help. Sometimes Nicole has breakthrough bleeding which ends up being a full blown period. Anyway recently for two months she got her period at the proper time with the Pill cycle and each time went downhill from whatever the period does to women with POTS. Then last week she started the Pill again and within 4 days into the Pill she began spotting and then suddenly she had her full blown period and hadn't even recovered from the prior period. She's already so debilitated that to go downhill from her period constantly isn't helping her at all. By the way she had asked her local doc for a higher estrogen dose of the Pill to hopefully stop the breakthrough bleeding and he said he would only give it to her if he gave her a gyn exam which she does prettty regularly but she put it off a bit (that was before this relapse within the relapse while she was climbing out of the May relapse). Anyway now she can't get there at all for the gyn exam. She hasn't seen the specialist in a long time as there was nothing further to gain and has relied on the local doctor to give her the gyn exams. So when I last wrote to this forum about Nicole she was about to get IV saline for a day and then she nixed it because she never ended up heaving. And then this whole period business had made her feel so awful - (plus she is affected by her period way more severely of late than before she was so sick in this present relapse)- so she asked the local doc again for the IV and got on it for a week which is almost up- in two days. So here she has been on the IV saline and got her period again (on top of the prior one) and hadn't recovered physically from the other which erased the benefit of the saline and took her down even more in several ways. I am wondering very strongly if maybe Nicole is a good candidate for that period suppression treatment. I called a relative who knows a mid-wife with her masters degree from Yale. This midwife works at a local hospital delivering babies and she also knows a lot about many gyn issues. She has agreed to call Nicole on Thurs. to discuss ways in which a woman can suppress her period. I don't know if these are natural and/or pharm ways. Do any of you think after what I just told you that suppression of Nicole's period might help her get a foothold on climbing out of this bedridden state she's in? The midwife won't write the prescription so how we get it will be another matter. My brother who is a (recently retired) pharmacist just told me that there is something called Seasonal which is a patch I think that suppresses the period for 84 days. And the midwife may have a few suggestions. How about you all? How do you fare that time of month? I know it depends on your state of health as to how susceptible you are to downturns from periods. Or maybe some of you don't get affected. I have seen it twice in the POTS literature -(ony a few sentences here and there) that periods make a POTS woman worse and sometimes suppression is tried. If you aren't sick of discussing this would you mind giving me some feedback about yourself and maybe your opinion about what I told you about Nicole and should she try to suppress her period as it seems like a major factor that is keeping her in the bedridden state. Also do any of you have menstrual irregularities or do any of you have PCOS? Also I can't help but wonder if there's a relationship to the severity of this illness to the severity of menstrual irregularities. It's not like Nicole bleeds heavily. Her recent hemoglobin count was actually normal. Any iron she takes helps in that way. Also if any of you know of any links that really go into detail about hormones and periods and worsening POTS it would be so helpful then I could show it to Nicole before her phone consult with the midwife. Anything you could offer will be so appreciated. Thank you, Beverly

Tearose and Rita, Where do live? Nicole sees a neurologist in Boston, Dr. Roy Freeman who specializes in dysautonomia. He is at Beth Isreal Deaconess Medical Center and he has an ANS lab there. Nicole has been very happy with him. Beverly

Thanks emily and very blue for your kind words. Emily, I know how hard it is for you to post sometimes about yourself. Thanks for keeping us in your thoughts. And veryblue- what kind of lawyer do you want to be? I hope you can get better to go to school. Wow! Stamford!!! Isnt' that where Chelsea Clinton went? By the way I still don't know what your day to day symptoms are, very blue. Have you ever posted what kind of things go on with you? Beverly

Thanks Katherine and Geneva for your thoughful words. It helps to receive such kindness and compassion. I am tired. And when I can I will post the latest. There's been a lot going on. Sometimes it's easier sometimes for me to respond to others' posts than to drum up the energy to describe the latest - but I will. Best Wishes, Beverly

Katherine, Thanks for the reminder, (i.e. the "boost") that people with dystautonomia who have seen signs in their past can actually get to a good level of functioning. That reminder will help me to sleep better tonight. Soon when I get the energy - I will post what's beem going on with Nicole in the past 2-3 days. Not that great. Which is why I appreciate your reminder. Good night. So tired. Beverly

Ernie, I loved reading about your biography class. It sounds like you already established a feeling of belonging. Wow! Two years to be together. You are in the process of making wonderful friends. In time they will feel like family. Not to sound biased - but it is they who will benefitting greatly by having you as one of the family- you are indeed kind and compassionate. Not to mention that you already write in a very poignant fashion - I can only imagine how equally poignant your biography will be. Emily, Thanks for pointing my way over to this site to read your posts. Thank you kindly for sharing some of what you go though. It certainly sounds very difficult yet very familiar. I know that your days can certainly present a challenge to you yet you have a much wisdom and maturity and a good attitude plus you give good advice. As you know I am interested to know even more of your story but yes as you said you will tell it in bits and peices which is a good way to tell a long story. By the way unless I missed it somewhere - I don't quite know what gave you the energy you spoke about that enabled your fingers to fly all over the keyboard and give us so much of the scoop about yourself. What new drug are you taking? Beverly

very blue, I will keep good thoughts for you that you do recover so that you can get back to doing what you love. Meanwhile I will offer you motherly advice and that is to take really good care of yourself so that your body doesn't have to work so hard to compensate for what is not working right. Like for instance here's one thing you could do. Look into a good, healthy diet - Lots of people who don't feel well stay away from grains (except maybe brown rice), fried foods, junky stuff and especially sugar and highly starchy food. Oh yes and dairy. A way to tell if this will help you is to avoid all of these things for two weeks and notice how you feel. People who get chronically ill sometimes develop "intolerances" to the above foods (and sometimes other foods too). You can find lots of books about food intolerances and illness. By omitting certain foods from the diet one can actually gain better health since the poor, tired body doesn't have to work so hard to deal with foods that it doesn't want. Also it seems you like to get "wasted" sometimes - I don't know how often you do this- by maybe you could try not to do this for a while too. Just start taking really, really good care of yourself- really -so that you can improve your chances of recovering completely. Get books and books on recovering from illnesses. There are lots of information in these books. You are too young to have a "mystery illness" that keeps you down. If I were in your shoes I would do everything I could to help my body recover. Just some motherly advice . . . Best wishes, Beverly

veryblue, To answer you questions- tearose said it very well about Lyme. Sometimes there is no rash or if there is one it may not be the classic "bulls-eye". Sometimes there is a rash but it is on the body where one cannot notice it. Also some people never get the initial flu like illness. They just go onto the next stage of Lyme. As far as Nicole goes -looking back at her life- there were things. Unlike you she did not like sports- could not really tolerate sports. Felt crummy if she had to run - like in a race in gym. I remember one time when she was around 9 she burst into tears as she tried to make it around a short race track and said she felt really sick. She was coming in last and could barely make it to the finish line. When she was a baby if she cried when she was upset - like if we attempted to leave her with a babysitter (even with her grandmother) she would vomit as a response ( I read this can be a sign of autonomic dysfunction). When she was a newborn she never slept during the day (maybe one or two hours) where most newborns are sound asleep practically all day. When I looked into the nursery window (the olden days that's sometimes what we moms had to do to see our newborn babies when they weren't with us) all the other infants eyes were closed- they were fast asleep and Nicole's were wide open like something was up with her nervous system. Now wshe did sleep entirely through the night beginning at two weeks and starting at about 5 years old once she fell asleep we could not wake her up no matter how hard we tried- like if she was coughing in her sleep and we wanted to give her medicine- we couldn't wake her. It was like she had gone into a coma. Yet she'd wake up in the a.m. for school like a normal child- but she always required a lot of sleep at night. Also she had emotional ups and downs, hormonal problem, menstrual problems, she was easily startled (still does at 28). Also she has enlarged pupil- had them as a baby (read this can be a sign of dysautonomia). There's probably other things that I cannot remember. I am not saying that these definately were signs of what was to come but others on this website have experienced certain problem as they look back so it kind of makes one believe that these things Nicole experienced were "foreshadows" of what was to come. I wish I had answers for you, very blue. I don't know what your day to day problems are but if I were in your shoes and feeling alone and scared and in the dark I would look for the smartest doctors I could find. Doctors that ask as many questions- ones that go hmmmm- let me think about what you are saying. The type that think outside the box. Tall order, yes, but not totally impossible. I certainly don't mean to simplify your dilemna. There aren't always answers but maybe you will be fortunate if you look hard enough in the right places. Best wishes, Beverly

tearose, When you say mini-awakenings do you mean that you are conscious of being awakened many times or did the sleep study show that these mini-awakenings are on an unconscious level? Were they able to explain how the firing up of you autonomic nervous system appeared in their observations or on the "graph paper" results? Like how it showed itself in action? Thanks, Best Wishes, Beverly

very blue, It is late and I just saw your questions. I will be happy to answer them for you. I may not get to it until late tomorrow or early on Sunday morning because my schedule. I promise to do my best to answer soon. Just a bit tired right now. Take care. Beverly

thanks for answering my questions- very much appreciated- it's so good we can learn from one another here in this forum. I have my fingers crossed for you too and a prayer in my heart. Beverly

What a generous?act on your part to do this work. I'll be looking forward to learning how to place an order. Beverly

goldicedance, In your post you said that you had been in the hospital and had been doing poorly with POTS and dehydrated. It is encouraging to hear that this drug mestonin got you up on your feet. If you do't mind me asking how long were you off your feet and dehydrated? Were you bedridden? Also how long have you been on the DDAVP? What benefit do you think you gained from that drug? You must have a really great local doctor to put you in the hospital and put ou on IV and know what drugs to try. Thank you. Best Wishes Beverly

blackwolf, I am so sorry that you have all that pain. I somehow did not know this. I remember you said that you slept on the couch but I didn't know why. There is a gal for whom- (up until Nicole got pretty sick recently) I was a patient advocate. She has Lyme and one of her big problems is pain. I never met anyone who was in as much pain as she was in. Anyway to make a long story short she had depression and found a psychiatrist whose specialty is pain management. You could have knocked me over with a feather- I never heard of such a combination -psychiatry AND pain management???? Then I was shocked even further to find out how he decided to treat her overwhelming pain. Ready? Methadone. The gal thought as I did - sounds a little out there (cuz it's used usually for addicts - to get them clean) but she did research and found out that it is the newest cutting edge treatment for pain. Anyway she got on a dose that suited her disposition and pain and it has made all the difference in the world in her life. Anyway- I don't know if you ever heard of such a thing- methadone- for treating pain- but I thought I'd tell you in case you'd like to tuck it away for future thought. I hope you find out soon what is causing all of your muscle and joint pain and swollen glands. Take care, Beverly

Thanks all for your kind words. I am home now after spending a good part of the day with Nicole. It feels so good to know that you are all there and so understanding - how difficult this is and offering advice and support and much more. I just telephoned Nicole and told her about all your responses and how many of you couldn't live without your beta blocker and that even fatigue could be lifted by it. I told her as I always do about your wishes and hopes and prayers for her. She is grateful for all that you pass on to her. Earlier today when I was at Nicole's apartment she expressed some hesitancy about continuing the Toprol. We decided to skip today because of what happened to her this a.m. But just a few minutes ago when called her and I told her about your responses and how beta blockers helped you and that it could help her she agreed to try it again tomorrow barring any episodes. I pray she does try it again. To answer your question far she has tried Florinef and she takes 50mgs of Zoloft. Presently we are trying to set up a phone consult with her POTS neuro specialist which according to his secretary he might consider having with us. Now that Nicole is in the mindset of trying something pharmaceutical to get her out of this mess the phone consult might be very beneficial. I pray it all comes together. About the p.s. This morning Nicole felt alarmed because she was experiencing such nausea more than she normally feels and she was teetering on vomiting. Plus she was having a stomach ache. So she called her local doctor and said she was afraid that she was about to lose fluids which didn't end up happening thankfully. He had ordered only one day of IV saline which Nicole "postponed" when the nausea lifted in case she needed it another time. When I got to Nicole her male friend/ roomate who had long gone to work had made her peppermint tea which was helping a little. Then I made her ginger tea. Over the next three hours the nausea lifted and she was able to eat some lunch much to my relief. Now we will see what tomorrow brings. Please keep good thoughts that it is better. I will keep you posted on the beta blocker. Thank you all again. Best Wishes, Beverly

If you all would be kind enough to send some positive vibes Nicole's way maybe it will help in a couple of ways. First of all Nicole has summoned up the courage to try Toprol thanks to what some of you had said in responses to a past question I posted. She has always been very, very cautious about trying drugs and the fact that she is actually trying one is a big step toward the effort to "manage" this illness. Nicole is desperate to gain some ground. Three days ago she took a "crumb" of the Toprol- and I mean a crumb- like 1/15th of a 25mg. pill. She thought she felt "irritability" but she passed it off to her constant array of symptoms that come and go as she had taken such a tiny dose. Yesterday - she was ready to try again and took 1/6 of the pill or @ 4mg. In short order she was feeling irritability again but more intensely. Plus funny feelings in her arms and legs. I called the pharmacist and she said she had heard of this irritability and it should pass as her body adjusts over the next week or two. Plus I read that one of the side affects was the inability to sleep which kind of went hand in hand with the feeling she was experiencing. Anyway yesterday Nicole said she would really try to stay the course and get past this side effect and once it subsided she would try to raise the dose as needed to gain benefit. The instructions did say to eat with food or after a meal- which I realized this after she took it. She took it 3 hours after lunch. So today I am going over to get her lunch ready and the plan is for her to take it on the heels of lunch. I am kind hoping that she will indeed try the drug again even though she knows a side effect will occur. Although there is no promise that this drug will achieve positve results still I am hoping that Nicole will gain something positive from it and that Nicole will be able to stay the course to find out if it has a positive result. When she stands up she feels horrible and her heart races terribly and then when she lies back down again it takes a while for her heart to calm down. Also her heart rate in the supine position has been higher lately and as I've mentioned before her supine bp is higher from the licorice and the salt, etc. Plus if this drug could block the adrenaline effects she experiences this of course will help as well. Not only am I hoping and praying that Nicole will stay the course and wait until this side effect passes I am also hoping and praying that no other side effects kicks in. Also I was wondering - when do you take your beta blocker- those of you who take it? Her prescription is for 2x per day. I am concerned about the sleeping problem if she takes it too late in the day. Do you take it in the a.m.? Once a day? 2x per day. How do you divide it up if it's 2x per day? Did you have initial side effects and did they pass? Anyway if you could send her wishes that she gives this Toprol a good try and have positive thoughts that it works for her - and that it helps her gain ground- I would be very grateful. Thank you, Beverly P.S. Nicole rarely calls this early in the a.m. and just as I was finishing up this post- she called- just seconds ago. She is extremely nauseous and feels like she might throw up and asked me to come right over which she never, never does. She called her local doctor and she is being put on IV saline again. Now we could really use your prayers. I thought she was starting to come along and that today she would eat her lunch and try the Toprol again. It was like symbolic- of her moving along toward better things. Now I don't know what is going on. Why is she so sick feeling? Could it be the effects of yesterday's Toprol? Or what??? This is really tough.

Dear blackwolf, If you don't think you can attend that sentencing you should listen to your gut feeling and definately not go. Now that this brother business is getting -really getting behind you - will automatically start to sleep again. It will just start to happen. You have been through so much but now your body will "get it" that it's okay for it start winding down. Also what is amazing when you begin sleeping again you won't have to collect as many nights of sleep as you'd think before you feel revived. I speak from experience. I too have had trouble sleeping for quite a while now (weeks on end) because of lots of things and I cannot believe how it interferes with functioning and thinking and perspective. Then things feel amplified and the body aches. But anyway suddenly out of the blue I have been able to sleep well for the last 3 nights and I notice such a difference. I'm not even going to question it. Only trust that my body figured out that it was time to let me sleep. After weeks of not sleeping and then 3 nights of sleep I feel so much more functional and have a much better perspective. And the same thing will happen to you. All of a sudden you will start to sleep again. And you will feel better in many ways. Good luck tomorrow with the bloodwork. Feel better. Best Wishes, Beverly