Nicole's Mom

Emily, I won't give up on you. I am going to ask Nicole for a list of movies that she would recommend. Of course it could be the other way around too. You could suggest movies and she may have seen them already too. She has seen so many. Just don't be too alarmed if she includes some artsy ones or sub-titled movies. Beverly

Thank you all so very much for your opinions and support. I really, really value what you all say. It's good to get direction from you and your experience. Steph, thank you so much for ALL the information. You go so far out of your way to help. Thank you for doing presenting so much information about this topic in your post. I am so grateful. I am going to print down all that you posted ( and every one else's reply) because it is an important issue. Emily, like you, there are some days where Nicole wants to drink, drink, drink. I think what you said about limiting to one gallon is a good idea. And Jersey girl, you were told the same by your doctor to drink a gallon per day. Radha, some of what Nicole drinks is salty water. I measure out the recommended amount of salt each day for her and put it in a little container. She puts some of it in her water which she chugs after her meals because of advice on this forum that salt is best absorbed with food. She does the same at night - late night snack to help retain some fluids overnight. She uses Celtic Salt and takes about 5000++ mgs. sodium which is the higher end of the recommended amount. Some she sprinkles the remainder on her food. But she does drink plain water in between. I will look for the Dansani purified water with mineral. Thanks for that tip. tearose- you asked if Nicole feels any differently depending on the amount of water she drinks. I don't think she does feel any different. It's more like if she's having a flare-y day she drinks more water in response to that because her thirst increases on the flare-y days. If you don't mind me asking- when you say you have had problems demonstrated in your bloodwork from drinking to much- are you referring to lowered ADH or electrolytes or something else? porque- that is interesting about your ADH - that it is low and you don't drink a ton. I'm still learning about this ADH so I'm wondering - is there something that you can do to raise it? Is there a drug for this? If so would that drug be a vasopressin that some of you take to help pee less? As far as how much Nicole drinks, we will start measuring it. It's possible - maybe likely that on flare-y days she drink more than a gallon. On better days she is not so thirsty. Also how does one measure ADH? Is is bloodwork? We are about to receive all of Nicole's records from her POTS doc. I will look to see if he has been measuring it all along. Whenever she sees him- he has her do bloodwork. Thanks again to all. Regards, Beverly addendum: By the way- Nicole has continued to come along. Slowly . . . but surely. And for those of you who helped with the last two posts- re: beta blocker - how much it helped you and encouraging Nicole to stick it out-in spite of side effects- she did stick it out and now she is up to 1/2 a pill 1x per day. And will soon go to 1/2 pill 2X per day which is what is on her prescription. She is so sensitive to meds and she climbed up from a smidge of a crumb. For her to be at 1/2 of a pill is HUGE. But it is thanks to all of you that she is doing this. And it's thanks to all of you way back who encouraged her to do salt that she is doing it vigilantly. It is such an important thing to do especially if you're taking florinef. Thank you all!! This forum is just so GREAT!!!!

Emily, I hope you got through the night without any attacks. I am so glad for you that you got the test set up for the scan. I think you are right to read some past posts re: surgery with POTS. You may find some comfort there in case you do end up needing the surgery. And tearose makes sense when she says good hydration and baby doses of drugs. Maybe I'm just being extra cautious but something I would like to suggest is to maybe ahead of time you might want to make sure that you can tolerate epinephrine because I think that is part of what is administered during anesthesia in many cases. I think they can do a little test of sorts. (Another "test" is to get a tooth drilled and see how you react to the novacaine Actually this is how I found out I am sensitive/allergic to it and now they use something without epinephrine. But I don't think you'd really want to go that route . . . ). Nicole just got a great movie that we all watched called "Whale Rider". It's a tender, poignant story of a young woman who is brave and determined to be who she is meant to be among her people. I think it was up for a couple of Oscars. It is well-written and the young woman is an incredible actress. It's really a lovely movie. Also on the sillier side- we saw the original "Nutty Professor" with Jerry Lewis (1963). It is Jerry Lewis's favorite movie because he got to play a different kind of role(cool cat, serious) for part of the movie (after he drinks something he made in his lab.) You might like these if you've haven't seen both already. Take care, Beverly

Thanks so much porque for your reply. It's certainly something important to think about- electrolytes. Nicole does take prescription potassium (K-dur) from the pharmacy and magnesium and of course the salt. And her last blood test indicated a balance in her electrolytes. I was wondering about the ADH since that plays a role in retaining the fluids and I know if you drink too much you can wash that out. Beverly

You'd think by now our family would know the answer to this question after all this time. But here I am trying to find out: How much is too much water to drink like when is one drinking so much that there is a danger of washing out the ADH? Sometimes Nicole's drinking seems reasonable and sometimes she gets really thirsty and drinks what seems like an awful lot of water. She does do a high salt regimen but that doesn't change from day to day. It's pretty much measured out exactly. Yet her thirst changes. I can't seem to find a formula for water intake anywhere especially for POTS patients. Any help would be appreciated. Thanks Beverly

Hi Emily, I'm so sorry that you went through such awful agony and were dismissed like you were. It really ticks me off that someone as kind and sweet as you would have to go through such a horrible event 3x with pain and sweating and wretching and all the awful after effects and THEN have to deal with that glibness/ dismissiveness from the medical community. Nobody should have to go through such things. It happens far too often, though. My advice to you, dear Emily, is don't take no for an answer. Push the issue for yourself and demand the test or tests that you feel you need. It seems that you have a pretty good idea from your own judgement what you need along with some ideas as well from this forum as to what you should first pursue. Again, I'm so sorry about this recent stomach attack. I hope you get some answers soon. And I hope your Mother's Jewish chicken soup is helping you to feel better in the meanwhile. Best Wishes, Beverly

justme, If you don't mind me asking- you said your wife had extensive testing for 3.5 years. I'm curious to know what kind of testing was it- I mean- was it all done at Mayo by Dr. Low for instance - or at another POTS facility? Also please excuse me if I missed your description of your wife's present condition if you have posted it recently. But I am wondering how your wife is doing in general and how well does she handle what has been handed to her with this illness? Does she use any of the typical dyautonomia meds? And about you. . . How are you doing? We "caregivers" don't have much of a chance to converse with one another on this forum but I thought I might take advantage of this post to ask you about yourself. I wish you all the best. Beverly

Radha, I'm sorry but I can't answer your question re: beta blockers specifically because Nicole is just climbing up on her dose at her first attempt in trying them. But similar to John, she has experienced a lowered effect from the Florinef. Perhaps the body gets desensitized in some cases to certain drugs. . . or maybe needs higher doses to be effective. Take care, Beverly

Oh my gosh. I know how much he means to so many of you. Meanwhile I just called there yesterday to verify again what I had been told last week( that Nicole's doctor's office staff had to call to make the appointment for Nicole also that they were booking into next August/ September for new patients) and the receptionist never let on at all that Dr. Grubb was out on leave presently. That is so very scary to think it is cancer and that the nurse said it was serious. Nicole had been planning to call her local pcp tomorrow to ask his office staff to make the call to Ohio. I gave her the phone number and who to ask for at Dr. Grubb's but she will hold off. I hope he pulls through this okay. Let us know what you learn, violahen. Thank you for posting this. Beverly

Opus, I've read your question a few times and have thought each time about whether I should put my 2 cents in or not. But since eyes are very important I came to the conclusion that I would not hold back my "view" on this. I remember someone telling me a few years ago that someone they knew had this done and began to experience terrible light sensitvity and had to begin wearing sun glasses all the time. (I honestly can't even remember who told me this which is why I almost refrained from writing this). Perhaps there was inexperienced doctor in that case or perhaps this is rare and that person just happened to be unfortunate - like had the wrong kind of eyes for such a procedure. I do, however, also have a vague recollection of reading something back when the first procedures were done that there were instances where things didn't go right. Perhaps the technique and skill level may have greatly improved over the past few years. In general it's claimed to be a pretty safe procedure (but who is claiming this?). So I guess what I'm driving at is- maybe it would be a good idea to research it on the web or go to medical sites to learn of the risks. One other thing - if we are talking POTS- and you already having dry eyes. I know Nicole's eyes vary in dryness according to how she is feeling. When she is in a flare-up and her eyes are dry she cannot wear her contacts and must wear her glasses which for some might be reason one might choose to do this procedure. To eliminate the hassle of switching over to glasses, etc. But something cautious in me tells me that this would be a GOOD reason maybe to NOT do the procedure. Because dry, POTS eyes are not like the average, healthy person's' eyes and thus might possibly be a little more prone to problems from such a procedure. Anyway sorry to sound so negative. Still if you decide to go ahead and do it, I agree with Gena that you should definately go to someone experienced. Beverly

I have a friend who is a psychiatrist herself. When she became very ill with a systemic, "mystery" illness and dragged herself from doc to doc for help, she was told that there was nothing wrong with her and that SHE should see a psychiatrist. She was really sick, fatigued, very skinny, fevers, blotto cognition, etc. Turns out that after 5 years of perseverence and being told many times that there was nothing wrong with her, she found a surgeon that was willing to do exploratory gastro surgery and this surgeon discovered that an intestinal operation done just 5 years prior to the onset of all her problems had been botched up. Her intestine was all twisted up and "stuff" had been leaking into her system. The twisted area was unable to be detected by a CAT scan which is why nobody would believe her. Anyway it's a good thing this friend persevered in finding a doc who would listen to what she strongly felt was the problem. Beverly

Radha, I'm sorry that your doctor is again making you jump through hoops again. Just to let you know: Nicole is again trying to take the Toprol. The prescription she has says take 1/2 to one 25 mg. dose 2x per day. She has been eaking up from a crumb to 1/6 of pill 1x per day for the last 2 weeks. Today she will start taking the 1/6 of her pill 2x per day. From collective advice from my own prior posts on this forum questioning beta blockers I have learned that each person responds differently to different doses and to different forms of the beta blocker itself. Like someone said they were on 100 mgs. while others said less worked for them. Also some said they tried one type of beta blocker but switched either because it was ineffective or because of the side effects. Nicole already takes Zoloft which helps her mood. However, separately from that if she overdoes it- the first thing that happens is she gets adrenaline-y and then she goes downhill and stays there. The adrenaline seems to play such a huge role in her problems. It seems like first there's adrenaline- then the hypovolemia, tachycardia, peeing, insomnia, and then all these other other symptoms. Like when we took Nicole to those doctors on Sept. 15 and the trip was taxing physically - just from Nicole having to stand for hr and bp testing and from sitting up too much - her first noticable symptom of this present relapse was her feeling adrenaline-y. Then all else went downhill. And she was not stressed emotionally or anything. She was happy to have found a doctor who she really liked. There was no anxiety. It was the physical exertion that kicked that adrenaline up. Nicole's POTS doc does not generally use beta blockers for POTS pts. but it sure seems like so many on this forum depend upon them and have received great relief. It was a local doctor that gave her the script. Based on what so many have said in this forum about beta blockers - it seems to me that you are perfectly justified in wanting to try the same route that has helped so many. Beverly

Katherine, Thank you for being such a warm, caring "support" person. You contribute so much with thoughtful, smart responses. Happy Dinet Anniversary. Beverly

Nina, Have a great trip- a much deserved relaxing vacation!!!!! Beverly

Blackwolf, Just curious. . . this low dose prednisone you are on. . .what is the name of it- if you happen to know. I was reading about low dose hydrocorisone and how it can help with an overly stimulated immune system- and all the effects that go with it- low enough dose so as not to cause adrenal suppression which a higher dose can cause. I am not sure if it is actually a form of prednisone- will have to research further. Anyway- when you are not feeling too funny ( ) and when it doesn't hurt to type so much, (i.e. when it feel okay for you to get into details)- I am wondering for how long you are to take this low dose prednisone. It will be interesting to know how you fare after a bit of time on it. I hope it helps. Meanwhile- ponder these things until you are ready and able to answer and hope you feel some relief!!!! Beverly

Hi Gena, I'm so sorry that you have been plagued with these nightmares. Presently Nicole isn't having nightmares per se like she was having but if, after sleeping very deeply though the night, if she then gets up to use the bathroom in the morning and then goes back to sleep - she might have a very vivid dream during that time which is unlike regular dreaming. The dreams are weird but without the terror of a nightmare. I'm glad that the Klonapin is helping you sleep better and at least reducing these nightmares as well as alleviating your racing heart. I hope your sleep continues to improve and these nightmares stop. Bev

Morgan, I am so sorry for the loss of your precious friend. I am glad that Gene went peacefully. My heart goes out to you. Beverly

Emily, I think you are such a sweet, caring gal. You always reach out with such kindness. And humor too. But sometimes even sweet, caring gals who reach out with kindness and humor have the right to feel overwhelmed and yes even have the right (and/ or need) to step back, to rest, evaluate, find balance, figure things out, replenish and/ or just be one with oneself. Anyway- don't want to tire you out- and make you read a lot of stuff- just want to send good thoughts your way. Beverly

Dear tearose, Please, don't be so hard on yourself for wanting to be normal. You are doing your best to work around the difficult circumstances that have been handed to you. As Maya Angelou says- "I did what I knew how to do. And when I knew better I did better. We learn by doing. By living. We learn from experience. And besides . . . about that fever . . . you could very well have the flu like someone suggested already. Take care. Let your family bring you tea. I hope you feel better soon. Beverly

violahen, I want to thank you for the heads-up on Dr. Grubb and his busy schedule. I knew from this forum that he had surgery and suspected he might be backlogged but it is good to be extra-reminded of this. Also - I am so sorry for your experiences with this illness in that you had to go it alone and that your parents chucked it all up to you being just a nervous, hysterical child. That must have been extremely difficult for you. My heart goes so out to you. It sounds like it is still difficult where they are concerned that they still can't operate properly. I hope this doesn't bring you too much stress- the relationship they have with you. If so I hope you are finding help maybe with a therapist to work through that part of your situation. I think you must have a very good sense of self and a strong self-esteem for you to have stuck to your guns and embraced your own beliefs to search for answers for yourself in spite of your parents attitude. I have to commend you for this. Calypso, I want to thank you for shedding light yet on another angle on a totally different experience of using a beta blocker and then stopping it yet still having the adrenaline-y feeling. It's so hard to know what to make of so many things, isn't it? It seems to really boil down to this illness affecting everyone so differently and the drugs as well. Still- it is important to understand the experiences of everyone. So again thank you for sharing with me- your experience. Beverly

Geneva, Thank you for your response and all the details of your experience with the beta blocker. It helps to know what others have experienced so you can assess better what might be taking place or not- even though everyone is different. It really makes a huge difference to get others' perspectives. I'm sorry you had such a hard time being wired like that not only from the beta blocker but from the Florinef as well. This sure speaks to the power of drugs and individual sensitivies. Yesterday, Nicole took her crumb again and within 1/2 hour was feeling drugged - like drunk which is what she had said once before. Prior to that she was feeling adrenaline--y which is what made me write the topic. Now today after a night of sleep (will have to see what "kind" of sleep she had)- we'll see what today will bring. She has had all sorts of experiences since starting this drug. Hopefully they are side effects and will wear off after a couple of weeks. laila, thank you for your imput as well. It seems as if you too had your nervous system revved up from the beta blocker. You are also sensitive to drugs. I'm glad that you found something to take away that 5 year period of anxiety. Meanwhile your imput about your experience on the beta blocker is very useful. violahen, Thanks again- this time for answering my question so thoroughly. It is certainly tempting to consider going to Dr. Grubb. So many on this forum have said such great things about him. There is so much about orchestrating such a far-away trip-for someone like Nicole- her individual situation- there are so many obstacles and factors to consider. Hurdles. One is that travel alone can send Nicole spiralling backwards- so we need to wait until she is sturdier. Hotels have to be scent free- no carpet cleaning- no perfume (dryer sheet smell/ detergent fragrances) on sheets. She would need to be supine the whole time- even if she was in a sturdier state. Being upright for a length of time even while healthier can be problematic. During the (Sept 15) last doctor's (new doc one hour away) visit to get answers is what sent her from one relapse (which she was climbing out of) into this horrible relapse within a relapse. (Her relapses aren't just for a few days but for MONTHS and they aren't mild- she becomes entirely bedridden with lots of problems). Because of her fragility she woud have to be way sturdier than she is now and sturdier than she was on Sept. 15 because of the reasons I just listed which means setting it up (appt for Dr. Grubb) for into next year. But from what everyone who has seen him has said- it seems like Dr. Grubb is totally on top of this illness while being compassionate. Nicole is very scared of going even further backwards and I can't blame her. Man oh man- it's not easy. Even though Nicole is slowly but surely moving forward- this past 3 months has been some test of endurance - especially for Nicole. And this is from going one hour away to a doctor who is very smart and came highly recommened to us because he looks for all sorts of pathogens and loads of other things. Also there is a doctor (POTS specialist in Boston) who knows Nicole and wants to do more testing on her. He has his own autonomic lab. He is very smart. It makes sense that he would be the one we'd go back to first. But I can at least call Dr. Grubbs office and explain our situation and see if they have other scent sensitive, easily relapsing patients who need to be supine, etc, etc, and see what they suggest. So right now (I'm just thinking out loud. . .sorry. . . we still have the new, local doc who came to the house and we are waiting for the results of his tests and his recommendations and he may test futher. We have (sept. 15) doctor one hour away who has ordered his own tests a zilllion - many, many different kinds of tests and we are about to set up at home blood draws for that. We have the Boston POTS doc waiting in the wings to do more testing (autonomic) on Nicole and the chance that Dr. Grubb (I am calling today) could help Nicole if we could orchestrate such at trip. Okay- I 've taken up so much space - thank you for your imput- everyone -and thanks for always being there- everyone- this has been so hard- and you've all been so great with advice and concern. I am so grateful. Thanks again so much for all of your imput. Beverly

I loved your story. I love that you had such a fun time and had so much to laugh about and the way you can laugh at yourself. And I love that you love your church so much!! Thanks so much for sharing your fun. Beverly

violahen, Thank you for your response. What a great idea to check into how long the drug stays in the body. Yikes! It sounds like that adrenaline-rush was a really big problem for you that did not go away. Plus the beta blocker slowed things down too much. Thanks for the advice about Dr. Grubb. By the way, does Dr. Grubb run tests? Does he have his own dysautonomia lab? I've always meant to ask this or do you bring your info of tests that have already been done and then he takes action based on this? Also does he ever assess what you need- treatment based on what you tell him- like what symptoms you experience? Or is it all of the above? Thanks again, Beverly

Thanks again, Katherine. It is so true that it is difficult to figure out what is from POTS and what is from side effects from a drug. Thanks for letting us know that it took 3 weeks for the side effects to wear away. I'm sorry for you that you had to endure that depresssion but I am appreciative to know for Nicole's sake that it could be 3 weeks so at least we can have some sort of barometer to follow. Like we can say that the side effect can last anywhere from one week to three weeks for instance. Bev

opus88 I am so happy for you that you are home. What a vivid description you gave of what it's like to have your house flooded like it was by those hurricanes. I felt like you put us right there - standing beside you back when you were in the midst of all your muck and dust and damage. It's hard to imagine how every nook and cranny of everything you own could be so affected without such a description as you gave- what a vivid picture you painted. TV might show pictures- but it doesn't give the "feel" like you did so eloquently of how such damage plays itself out- the ruination of so much. Nevertheless, it certainly sounds like you are taking lemons and making lemonade- turning a negative into a positive. Now you have everything new-an updated house and you feel good about having "cleaned house". I will repeat some prior advice, though, don't do too much or wear yourself down. Hope your husband has a great surprise for his 60th. Beverly