taylortotmom

Thanks for your responses. It's pretty much what I thought especially since the ouput is normal. We all get paranoid about our hearts! Carmen

No, you're not nutty. I have cravings of pure salt- like I could just spoon it into my mouth (not that I would- ew!). Cravings are oftentimes our bodies way of telling us what we need. It's a survival thing. Carmen

I am as green as can be right now so I sympathize. My naseau at the moment is completely related to a migraine that is lurking about to hit full force if I don't get to bed soon. I do have a lot of non-migranous naseau which is usually helped by megadoses of peppermint candy at its onset. I don't know why this works but it does. I have a friend's whose pregnancy related nauseau was definitely helped by this suggestion. Carmen

Hi, I am exhausted right now so forgive me if this post is hard to understand. I have finally received a copy of all my med records after my soc.sec. hearing (I won- yay!). Anyway, one of my echos shows several areas of thickening in my heart- specifically my left ventricle. I do know that my cardiac output was normal (low normal). After investigating this myself via the internet, it appears this thickening could be cardiomyopathy. I'm hoping I am oveparanoid and reading way too much into. Any nurses out there understand about this "thickening"? Or... any of you had this dx? Carmen PS My mind is on my heart because I see my cardio on FRi.

Thanks for your responses. Goldicedance- does the pacemaker help your bradycardia sxs? (I get NCS from the lowered BP and pulse moreso than the tachy). I'm 31 with two young children. The iv's help but will the pacemaker? Of course, I assume I will still have to take a betablocker to help with the tachy. My cardio really wants to avoid doing the pacemaker and I'm starting to see why. Carmen

lalalisa- absolutely. At home, there is so much to do it is near impossible to "rest" because your mind is always on doing one more load of dishes or laundry. I think that is why I have been getting out so much lately. If we are not home we can't mess up the house. That is what makes staying in hotels so luxerious- someone else does the housekeeping. I totally get what you are saying! Carmen

Mom to mom- enroll your children in preschool. Go to the school and meet the teacher and other parents. Inform the teacher from the get-go what is going on. Teachers and other parents will be glad to help in any way possible. You don't have to go into great detail. State that you have a serious health condition that prevents you from helping out as much as you would like but you really want your children to have the same opportunities as other kids. Be specific about what you need. Many people want to help out but don't know what it is I need or what I am able to do for myself unless I tell them. You may not be able to be there physically but there are many ways to be involved in your kids' preschool experience even from the couch. I can elaborate on that if needed (make goodie bags, call other parents, etc.) You might need someone to pick up your kids and take them to school in the mornings- let that be known. If you can't find someone who will do this- pay someone. I emphatically agree with Karen that the best thing to do for your kids when you are sick is to give them as much normalcy as possible. Chances are they will tell their teacher and friends about you so it is better to let the teacher know what is really going on. I know my kids have had the "facts mixed up" and a rumor got out that I was pregnant once (among other things)! Also, your childrens' behavior at school might reflect what is going on at home. My little boy had a terrible time when he was three at preschool. He would hit and throw terrible temper tantrums which would correlate with me going in and out of the hospital. I made sure his teachers always knew what was going on, not so they would tolerate such behavior but so they could at least understand what was going on in my son's life. Either way, do what is right for your family and good luck! Carmen

Hi everyone. I return to my cardiologist next week and the pacemaker talk will likely present again. I have been pushing for one for a couple of years but my cardio wanted to wait as long as possible. For those of you with them, has it really helped? I have MVP with NCS and tachy-brady. I know that my cardio is consdiering a dual chamber pacemaker for me. I really don't know what this means. The point of the pacemaker for me would be to try to reduce the amount of NCS. I have a port-a-cath which allows me to have iv tx daily which helps but boy, do I feel it when I don't do it. So, has a pacmaker helped anyone of you for your dysautonomia? I've read previous threads about ablation having negative effects but I have tachy and brady. Anyone else out there in this position and chosen this treatment? Thank you! Carmen

There is a difference between doing doctor-recommended exercises and running with a microphone up and down stairs! For me, stairs are a BIG No-no and probably will be for the rest of my life. Include in that: running uphill, yardwork, tennis, vacuuming, mopping, scrubbing.... However, I can when I have a good day: walk to my heart's content (literally), do light house work, shop within limits, play with my kids, non-strenuos swimming, etc. So, the point I'm making is don't let illness rule your life but don't ever forget that you are sick regardless how well you feel. There are some things that you probably should not do- period. You know your limits. However, your doctors can better tell you what is okay and what is not. The ones I mentioned above came from my former neurologist. Of couse, I never ran uphill or did yardwork prior to getting sick so those two restrictions had no effect on my life! So, don't feel guilty about telling people no about certain activities. you know your body and you know what you can handle. It is not a cop-out, it is being judicious and responsible with your health. Carmen

I have been caught walking around hooked up to an iv and boy, do I get weird looks. But you know what, not as many looks as I would get if I was on the ground with paramedics around me. So, it's a choice. It's just one of those things I have to do in order to have a "normal" life. Same about a walker, scooter, or wheelchair- those are our tools for normalcy. I bet the more you use your walker and see its benefit, the less hang-ups you'll have about using it. Congratulaions- I know that it is a hard thing to do and maybe one day soon you can put it away because you don't need it anymore. Good luck! Carmen

April, I would strongly encourage you to not give up yet. It is not uncommon for dysautonomia patients to see eight or more doctors before getting proper or even adequate care. Unfortunately, there is no magic pill either. Even among beta blockers, many differrent ones might need to be tried before finding one that works for you without major side effects. I read in one of your previous posts that there is a dysautonomia center not far from you. I would do whatveer it takes to get there. Not only can they help you with your sxs they can give likely give you a diagnosis. If you are unable to work- apply for disability. That is what it is for. I have a Master's degree but get disability because I simply cannot work- it is not an option. I require iv treatment daily. However, on the same note, it is the iv treatment that allows me to have any normalcy to my life. So, yes, meds work! Without it, I would be in a much worse state than I am in now and certainly would not be allowed to drive. I have been where you are. I lived (barely) with unexplained sxs for years after the birth of my second child having test after test done. Our financial situation was dire. We had two children, one income, and a sick mom (me). My husband ended up leaving his job of seven years because he was working eighty hours a week and had a sick wife at home trying to care for two small children. We moved back home so that my parents could help and simply started over. My husband was able to get a better job (after eight hard, scary months) and my disability was approved just three months later! We were able to eliminate nearly all of our debt while home AND Jason got a promotion with a substantial raise after six months. We now live independently, debt free, AND I actually feel pretty good physically. I still require iv treatments and see my cardiologist regularly but we have came a long way in just nine months! So... do not give up. Things seemed to take forever to work out for us but when they did- they did in a big way. Hang in there! Carmen

If all you need right now is a pill to get through what all you've got going on- you're doing great. My gracious! You are sick, work fulltime and are trying to take care of an ill parent? How can you NOT have anxiety? Lexapro has different side effects for diffferent people. I took it for about six months "to take the edge off" during a particularly stressful time. I don't remember having any significant side effects. What I can tell you is that it was very hard for me to go on it inititally because I felt as though I was "weak" for taking it. I was a therapist for Gods sake. However, my prescribing psychiatrist told me I would be shocked if I knew how many people were on psychotropic drugs and it is really and truly no big deal. As long as who is prescribing it has taken the time to talk with you and considered your history and put you on it for the right reasons it can be a a very useful tool. Please keep us posted- I admire you for what all you have taken on but don't be a martyr. Carmen

I am so sorry you are going through all of this. I had similiar symptoms at the onset of all my problems (about five years ago). I had repeated colonoscopy's because even the doctors thought I had colon cancer at twenty-six! Turns out, I had endometriosis on my colon which was causing the GI sxs (major rectal bleeding during menses- it was awfu!). Last summer, I had a total abdominal hysterectomy and my life has been much better. Am I well? No, unfortunately my cardiological and ANS problems have stepped in where the GI sxs left off- but at least I don't have to worry about colon and gynecological cancer every month as I did previously. As far as your morning sxs... if you are losing a lot of blood you are probably having some anemia. This happened with me- plus, the stress of your body doing really weird and unexplainable things triigers physical and emotional stress which literally, can make you sick! I am so sorry about your work situation. I tried to work briefly during my illness but it just was not possible. And now, it is not an option. I know this is not a very supportive response other to say, I understand thoses sxs and what an impact they can have. If you haven't you might want to check out the gynecological side rather than just the GI. GI doctors are going to say it's gastritis if they have no better diagnosis just like a GP would tell you a virus. It's kind of a catch-all phrase for "your guess is as good as mine". Good luck! Carmen

I know of few greater feelings than turning in that final paper.... (unless it is turning in that final final!!) Congratulations, Nina! You are an inspiration! Carmen

One thing that helps when my "mind won't stop" is to write. Whether big or small write down what is bugging you. Write down every possible scenario. For instance, write down what is the worst thing that could happen and then how would you handle it if that happened. Oftentimes, seeing things in writing puts things in a realistic and manageble size. Things that seem so big and terrible don't seem so huge when you can write down different solutions to them. Writing is also great because you don't have to worry about anyone else reading what you write- just write. It is for your eyes only so there are no boundaries. I have gotten out of bed in the middle of the night and written. The next morning what I wrote may not make any sense but it helped me calm down enough to sleep so it was beneficial. Hope this helps! Carmen

Nina hit the nail on the head so I just want to make a couple of additional points. First, in my situation, I had no clue until I had my second child that there was anything wrong with me. Pregnancy oftentimes triggers dysautonomia and that appears to have been true in my case. A second point is about the adoption suggestion. Although I do not know this for a fact, I would think it would be hard for someone with chronic illness to have an adoption approved. And really, isn't it just as unfair to parent a child while sick regardless if it is your biological child? Of course, none of us want to be "sick" parents but that is the hand we have been dealt. And honestly, it has been a blessing in our family. My illness has made our family closer and I value every second I have with my children. Do I feel guilty that I might have passed on some bad DNA to my kids? Yes. But, so does my father. He feels like he "did" this to me. The truth is- things happen. Dysautonomia is just too unpredictable at this point to say - "don't have kids if you have it". It presents so differently in all of us- just read on the board at what all goes on with everyone. And... we're learning. My hope is that if my children do in fact have the "dysautonomia gene" that by the time it truly affects them we will no so much more about what to expect and how to treat it. Carmen

I attended and graduated from grauate school while very, very sick. However, I would not recommend that to everyone. I had a very strong support system and even had times when my mother would drive three hours to stay with me to help. I paid a local college student to drive me during the month I was not alllowed to drive. It is a very personal decision. I had always thought I would get my doctorate so it was adament that I would have my Master's degree even if it killed me (at times, I think it almost did- literally). My recommendation would be to start small. Commit to one class and see how you feel. However, if you have had a bad time recently- wait. School's not going anywhere and you can start again next semester. The stress of not being able to do what you need for your classes will NOT help your sxs. When you feel somewhat better, then go but start slow. It's not a competition. One of my dearest friends and role models got her doctorate in her sixties!! There are many ways to contribute to society without working professionally or having a degree. I know you want these things but break it down to reasonable steps. Eventually, you will get there it just will take longer than if you were well. Also, don't worry about the financial side too much as the future has a weird way of taking care of itself. Because I am permanently disabled, my student loans were "forgiven" (at not penalty to credit). Just a thought. Good luck! Carmen

Thank you to all for your kind thoughts. We have no idea when we will see the cardiologist for my daughter so it is going to be a long tense wait. Thank you for letting me express my anxiety here! Carmen

My name is so obvious I felt silly explaining. But... my last name is Taylor and I have two "taylor tots" hence taylortotmom. Carmen

That's easy- smile, and say "I'm sorry- I can't . I am a heart patient let me get someone to help you." Carmen

I have a couple of thoughts. Based on the fact that you are working four hours a week, are you working for supplemental income or to get out of the house? If you are working for money, definitely start looking for a much lower physically demanding job. Going to a store can be strenuous, needless to say working in one!! If you are wanting to get income I would go to a vocational rehab facility and see if they might could help. They specialize in helping people with disabilitites get jobs. Or just your regular employment agency can help- the ADA was established to help people just like us who desire to work. If you don't need or want compensation, volunteer work is wonderful. It gets you out of the house, gets you in contact with other people, helps others while helping you think about other stuff for a while. You can volunterr for as much or little as you feel like (as long as you let the agency know in advance how much you think you can reasonably do). I have been a strong volunteer in our church and it has turned into the highlight of my week. I stay at home with my two kids and cannot work do to my disabilities. Getting out and involved if only for an hour a week has made a huge impact in how I feel about myself. Good luck! Carmen

Today we found out our six year old daughter has a heart murmur and must see a pediatric cardiologist. Based on my history, this gives me a bad feeling. Most murmurs are benign. However, mine isn't so of course, I'm starting to get that uneasy feeling about my little girl. Just need some support. I know she is going to be fine, but I'm a mommy and it's my job to worry. Carmen

Here is my motto to life right now: Don't let what you can't do interfere with what you can do. I feel your pain (sometimes, literally). I know whatever I can say you have heard before but here it goes. Walking is the best and easiest way to get back in the swing of exercising. It is low impact and can be adjusted to your abilities day to day. There is no cost related and can be done anywhere. I have found that walking as often as possible (and sometimes it is NOT possible) can help my overall endurance. I tried pilates until my cardio told me to stop. (Long story). When I was in graduate school myself, walking was also therapeutic. (However, physically I was at my worst during this time as far as gross motor skills go). It is hard to stick with something that is painful so I'm not sure what would really help you the most. Maybe there are some nontraditional ways of working your muscles that are not so strenuous until you build up some endurance. No pain no gain is not necessarily true. I'm not sure what has been vetoed for you but bike riding, skating, or even dancing can break up the routine. Of course, you may not be able to do anything like that based on your history. I'm sorry I'm not more help- I can make you a good deal on some pilates equipment though! Carmen

So glad you had a good trip despite some swollen ankles!! Dysuatonomia robs us of so much you are right about enjoying what you can even if you don't feel 100%. Disney is well worth the pain! Welcome home. Carmen

I'm sorry for not clarifying. A TIA is a transient ischemic attack, referred to often as a "mini-stroke". I have a history of complicated migraines so it took a while for my former neuro to be able to differientate between the migraines and TIA's. My tell-tell sign was blindness in one eye that would occur for just a few seconds before my other symptoms and seemed to correlate with my erratic heart rate. Migraines, syncope, and TIA's are so similiar in the way they present. It can be very scary and confusing to try and determine what is going on and that is why I emphasized having your daughter check out thoroughly. Even the scariest of symptoms are more manageable if you know what is going on. Carmen