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Kkb1216

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Everything posted by Kkb1216

  1. I get a rash on my face, arms and chest. I happened to get one while in a doctor's office today, and he called it hot, red and swollen. Other than that, I just have another set of labs to do So I can commiserate, but have no solution to offer. It is good to know I am not in this part of the boat alone! -K
  2. It has been very difficult to hear from doctors that I must be so stressed out my body is exhausted, or I have an emotional problem. To me, it invalidates my disease, and I find it makes me quite angry...followed by shame. I've found meditation has helped calm and center me when I get too overwhelmed by the curve balls in a day. So I can see the benefits in "spiritual healing." While I don't condone discussions about Dysautonomia being "all in the head", I do think learning to center one's self while in an episode can help speed recovery. Belief in the healing power inside each one of us is powerful stuff. On my worst days, I find it very hard not to fling that platitide back out to the universe. It's a terrible disease. Whatever helps, helps. The only constant in the universe is change. I'm just counting on the next set of changes being positive!!! Good Luck, and thanks for the food for thought. -K
  3. Hi, I don't like woodsy scents much. You know the musk and such. They do NOT give me a migraine. Probably because I am pretty good about sniffing other things. I carry small hand gels. I love to put them right up to my nose and get a whiff of a clean scent. Other things that help me are mints and ginger anything. A mint can be discreetly left in your mouth during some of your books tasks I think. It's good for neutralizing scent as well as helping nausea. Ginger ale, ginger gum, ginger root, ginger something is also a good helper. I have worn the same perfume for 20 years, and I would feel naked if I didn't have it on. It's just part of my daily routine. I am so sorry some peoples scents are driving you to feel bad. I hope you find a solution which allows you to work comfortably. -K
  4. Hi and welcome, I think I have done everything on your list but the sweat test. I probably proved in my TTT that I had no issues with sweating everywhere like a pig on a spit. LOL Anyways, I think you are going to be fabulous. Attitude is 9/10's of the battle, and you've got all this time to plan your positivity attack. Think how lucky you are to cram all of this in and get it over with. Lucky, to have experts who see POTS day in and day out who can help and support you. Lucky to have experts lined up to help you get the answers you need. That's amazing. This is all for you. If you want to ask about switching things around, do it! If you don't understand something in the packet, ask! Be your own best advocate and get what YOU need! I'm so excited to see you come out the other side of this armed with knowledge and ready to get better. Better can be relative day to day for most of us, but ignorance isn't a powerful weapon to bring to this kind of fight. You totally have this. Keep the questions coming. There are so many great people here who can give you guidance and such. -K
  5. Oh ya'll always have such wonderful ideas. I was having a hard time wondering if I was getting too much salt or not enough. I think Lose it might keep track of it in the nutrient section. I will have to go check it out!!! (I did a facepalm when i read the post btw) Sticky notes are fabulous. I like them so much I have them in different colors and sizes. I am amazed at the sophistication on the migraine apps. And the more info you can give, the better you can drill down on triggers and such. Oh my goodness, the bags on the stairs. This is so smart. I am limited right now on stair trips, so I have kicked myself a few times when I realized what I went down for, I forgot...for the third time. I am going to put these out tonight!!! I should email myself. I am not sure why this has never occurred to me. Sheesh LOL I love all kinds of tech gadgets, so sometimes the obvious and simpler low tech solutions never make it into my brain Fabulous ideas. Thank you so much for sharing! Keep them coming as you think of them. -K
  6. Hi All, Summer humidity is currently kicking my rearend. I'm struggling to keep up with what I need to be doing. I am looking at using some of the apps/programs I have to help me remember things, track my medicines, food, water and symptoms. For instance: I have an android phone. I use an app to remind me to take my pills three times a day. I also use a pill box to make sure I am actually TAKING the pills. I can see that my morning pills for today are still in the box, so I need to take them! The current app I am using is called Medisafe I began to see a change in my migraine frequency when the doctor's tweaked medicines. I downloaded an app called Migraine Buddy. I tell it when I start a migraine, then once the migraine is over I give the app more information. I actually didn't realize there was a period of 5 weeks when I didn't have a single migraine until the app reminded me. This sort of drill down information helps me find commonalities. Amazing! I am trying to use food to help me give my body the best energy possible. That doesn't mean I don't have days when I ask the family if they want to pull through Chick fil A because their food is flipping delicious. I am currently using Lose It to track every single thing I put in my body. Basically, Lose it tells me I am mess LOL, but sometimes the growth you do is accepting being where you are. So, I track my water, blood pressure and food in the app. I can drink 64 oz of water easy. 100 oz is harder. I need to see where I am in my liquid threshold for a day. I also love that the app tracks nutrients. I had no idea how much of my diet was filled with carbs. I also am not always eating enough protein. I like info, so I find this helpful. I've also managed to lose 20 pounds just eating healthier foods. Who knew? I am having trouble remembering things. I forget to return phone calls, refill medicines, schedule tests, and so forth. I think I am getting overwhelmed by all the stuff going on right now, but whatever it is, I need a spare brain. My hands have been giving issues, so using my phone to set reminders in my calendar has been troublesome. I've been using the "ok google" functionality to voice command things. For instance, I needed to pick up my refills the other day. I remembered while I was eating breakfast. I picked up my phone, said "ok, goggle" remind me to pick up my pills at 1pm. Google puts a reminder in my email, and gives me an alarm when it's time for the task to happen. This isn't foolproof, but even a 50% increase in efficiency is a major win right now. So, I am looking for your input and suggestions. What's helping you navigate this messy dysautonomia? What tips and tricks do you have in your arsenal? Looking forward to learning from all of you! -K
  7. Hi, I was feeling whiny about my mobility issues, but was reminded by the fabulous folks here to do what is needed when it is needed. It doesn't have to be permanent. I used a cane until I got the horrible walker. I loathe that thing... If you are going to be on grass, spend the extra dollars for one with multiple tips. That way it doesn't sink in the dirt as badly. You can also get canes that fold, so you it's not in your way once your where you are going. I still have my, what I loving call, lame stick. I occasionally still use it. So do what you need to. If you want, you can even bedazzle it, spray paint, decoupage, whatever you want. It's a music festival? Dress that stick up and take it out for a spin!!! Wishing you good luck!
  8. I am so tired of being tired!!! I had PT today, and I had to be wheeled out to the car. So frustrating. Most days I can pull off a couple of tasks, but like most of you, if I push too far I am going to pay. It's like a bank, and I've overdrawn my account. I am not prepared for summer. I need to get a better handle on resting. I'd like to avoid a hospital stay. I appreciate we are not alone. I am finding being this sick is very isolating. So I am really thankful when someone is brave enough to share their struggles. I'm off to rest. Sigh.
  9. I have NMS, and I only faint if I ignore all my warning signs. I know better, but I sometimes try to push through. It's incredibly stupid, but I can't seem to help myself. As doctors are learning more about dysautonomia, they are coming up with new ways to categorize it. The label NMS is also know as neurally mediated hypotension, neurally cardiogenic syncope/hypotension... I think there are more. You don't have to faint to have NMS. I have no idea why I have NMS. I can say I get quite classic signs before a serious episode. I get hot, begin to sweat, nauseous and black spots... Oh look there is the floor... My heart rate Never dropped. It went up in the 160`s and only fell 30 points when they laid me back down. I also slept in 12 hour clips for several days after the test if I remember right. We are all so different. It's no wonder not all doctors are up to speed. I am so glad her doctor is doing a great follow up test. Hang in there! -K
  10. Katie is right on the money. It can be hard to find a doctor who knows dysautonomia. I've fired 2 cardiologists and one neurologist. I didn't want to continue treatment with people who couldn't say, "I don't know?" No one is omnipotent. You are your own best advocate. You've got the raw data. Keep it, and get your pcp's opinion on a new doctor. I had my tilt table with a Electrophysiologist. Not a cardiologist. And the ordering physician was a neurologist. Don't feel pinned in to just one type of doctor. It doesn't matter what their title is, along as they serve your needs and support you. I know it can be hard to gird your loins for another round of finding the right doctor roulette. But you are totally worth it. Gotta scoot to PT. -K
  11. Just wanted to say welcome. I'm so sorry you've been so ill, but I've found this forum quite helpful. Many of us have see tons of doctors, done a bazillion tests, and it's not until a tilt table that we feel vindicated and a little less crazy. Vent away. Everyone here understands. -K
  12. Hi, This is actually have info on. Yay. I am on 400mg of metoprolol daily. Some days, I am too tired to brush my own hair. Other days, I can start dinner and take a shower in the same day...which to me is a barn burner of a day. My cardiologist says he has never had anyone on the doses I am on for as long as I have been, so he doesn't know how much of my fatigue is all beta blocker, and how much is other factors. So yes, I am often exhausted after 10 or 12 hours sleep. Regular activity stalls, and I get very frustrated on days where I can't seem to muster the strength needed to do the simplest of tasks. I do not have low blood pressure due to a beta blocker. I have a heart rate in the 140's right now watching Star Trek and typing on my tablet do dad. No two of us are the same. We all react differently. So, don't use me as a guide stick. And if you have concerns, call your doctor or his nurse and check in. Heart meds are serious business. Wishing you good Luck! -K
  13. GrandmaKK, I too would be interested to know if oxygen helps. I've wondered if it would get me through the foggy periods. As it gets hotter, I think I will have more issues. I tried explaining to a friend what brain fog feels like, but had difficulty. I've had some episodes lately when I have used the wrong words for things. Last instead of lane. Or names, I called my best friend Lori instead of Laura. Just weird crap, ya know? I know this will get better eventually, but it sure is disheartening in the short term! -K
  14. Oh, this has been fascinating to read! Makes me feel a little less nutty My first sign is sweat. Typically I notice it on my face after its already started everywhere else. Then I am nauseous. If I have managed to ignore both signs, I get black dots. I've got about a minute to get down. I'm lucky to have signs I, and others around me, can see before I lay down. As an aside, when I heard people talk about black dots in their eyes, I always imagined them to be one big black dot. It's not for me. It's a speckled mess in my eyeballs vision. -K
  15. Oh meditation is wonderful most of the time. Sometimes the clarity it brings can be emotional. I do not sit, cross my legs and such. Typically, I am lying in bed. I have some guided meditations I love. Sometimes I join 30 day challenges. Here is an example of one. http://www.mindfulnessbasedachievement.com/30day2015 I discovered Deepak Chopra has some of his meditation albums on Amazon prime music. I download my favorite meditations to my phone. I do them everywhere. Sitting in a car. Waiting at the doctors office. A 4-7-8 while getting blood drawn. And its a practice for sure. I have no idea if I am doing it right. It helps me slow down on a emotionally charged moments. It does help me become centered. So yes, I think it's a good for stress. Including the kind I pile on myself when I battle a bad day. Being needy drives me whackado! Give it a whirl. What's the worst the could happen? Good luck! -K
  16. Hi all, Insurance has been back and forth with my doctor. So we are moving forward at least. I fell at physical therapy and tried to faint in Best Buy. Hilarious to watch all the blue shirted young people run around with their phones out staring at the bright screens while they googled "middle aged woman falls over in store-now what?" I laughed like a loon with I got back under control. I've come to some sort of cease fire with this change, maybe even a little peace. I talked it over with my PT group of folks, and all of them agree it will make me feel much more confident, and stop some of the deeper, darker blue days I've had lately. I am sure my attitude will need more adjusting. I've planned a couple of day trips into the local area to see historical stuff once the contraption gets here. Being able to know no matter how the day is going, I can still have a level of participation has been a great mood lifter. So, I am sure like so many of you, this is a HUGE work in progress. Oh, the PT people said to make sure I get one with the ability to tilt somewhat and elevate my legs. I wouldn't have thought of that on my own. I appreciate all of you so much for the wisdom and kind words. It sure makes it better when you have a people to chat over things with. Share and such. -K
  17. Hi, This has been my biggest and scariest symptom. Until they figured out my brain literally didn't have enough blood to function, I worried my brain was deteriorating. I've always been sharp, and organized and had a great memory, and suddenly I would be talking and couldn't find a word. The weather messes with my migraines, but I don't know if I have seen a correlation in my dysautonomia. I know I don't handle heat well. I can sweat in a room that's 50 degrees with a fan blowing on my face. My husband often looks like a nut wearing a coat in the house. He jokes he could hang meat in here. I am convinced my mornings are easier now I am pushing so much water later in the day. I have moved my med schedule around, and am trying an alarm halfway through the night to chug a bottle of water. It also means I get out of bed during the night to use the restroom. So I think my blood volume isn't dropping as much. This is very much something in flux for me. I am trying things and seeing what works and what doesn't. I also think this will be a moving target. The frustrating thing is I can't ever correlate symptoms directly to a certain trigger. I can have a great day after a hard PT session the day before. I can have 5 crappy days in a row with no warning. As a Type A person, it's making me whackado!!! Good Luck, -K
  18. I am so very sorry. Nothing will replace the place your furbaby held in your heart. I wish you everything wonderful, and send positive thoughts your way. Rest, grieve and know he's waiting for you on the other side of the rainbow bridge. -K
  19. Hi, I am like Katybug, I have a rite aid machine that is automatic. It works wonderfully. I take a baseline reading before going to doctor's appointments, and I have always found my machine to be really accurate. I've flunked a couple of wrist cuffs, but I also have nurses who freak out when they can't count my heart rate. So I am really happy with my machine! I totally can't remember how much we spent on it, but it couldn't have been more than $50.00 bucks. There are tons of machines out there. I've seen some that hook up to apps for auto-reporting via wifi or bluetooth. I found a link on Consumer Reports where they talk about different machines. Maybe that will be helpful to you. Good Luck! -K
  20. Thanks everyone! Becia, I am so glad to hear it's been a positive for you. In my head, I tell myself it will be positive. My heart hasn't quite caught up yet. It will get there. I am a little worried about running into things/people. I am told it will happen. I'll just have to hope I catch on quick? I've been looking at some Jazzy chairs. The insurance called to say they need to find a provider in my area. So once I actually see what I qualify for, I can stop all this wondering! Maggie, thank you. It picks me up to know you've gone from chair back to walking. I don't want this to be a permanent step in my life. dizzyallie, I totally get where you are. If my Doctor hadn't seen me in heap on the floor, she and I might not have had this conversation for a long time. Everyone's issue is how long I am at home alone without help. And, I've begun to look like I am a football player who doesn't wear pads. Sigh. We all take this at the pace we are meant to. I am so glad to have heard from all of you. I'm moving forward. I just haven't quite found the smile part of all this yet! -K
  21. Well, had a couple of Dr's appointments late last week. While walking down the hall with my cane, I got dizzy and missed my footing. And I fell right over again. Except this time the entire office staff and two doctors watched me do it. Beyond embarrassing since all of them were looking at me like I was a bomb about to detonate. My Dr. asked me if I had thought about a chair. We discussed it, and since I am weaker than a store brand kleenex, she wants me in a mechanized wheelchair. I don't go out much anymore. Before this happened, I was working full time at a job I loved, going to school full time and managing all the other life stuff. It's like I have gone from 60 to 0. Instead of speeding up through life and plowing through, I'm stuck in this quicksand. My husband was with me and told my doctor I hadn't been leaving the house unless I had a doctor's appointment. Sometimes this is 3-4 weeks at a time. I fall so much, and after walking to one shop, or restaurant, I'm exhausted. It just hasn't been worth the days of rest I need afterwards. So now I will have this thing that will propel me back out into the world. I've tried to make jokes about it. Popping wheelies. Playing Grand Theft Auto through the perfume sprayers in the mall. But it's really all a lot of fluff to cover how upset I am over this. I know logically this change is going to allow me to leave the house and participate in life. That shouldn't be scary. But I don't like the looks people give me when I struggling with my cane. Now I'll wheel around looking up at everyone, and them down at me. Since my arms are week, I'm supposed to tell the people who fit me that I need a joystick. I have no idea how insurance works. I could be worrying over nothing since I don't know the chair has been approved yet. I've asked to rent the chair in case I get to feeling better in the next 6 months. I just can't accept this will be my life permanently. I don't know why everyone thinks Hope is a good thing. Right now, Hope maybe keeping me from moving forward into a different future. I know I am hoping for a miracle. They do say, what you resist persists, I know I need to find how to surrender. So I need a mechanized wheelchair... For any of you out there who use a chair, how has the experience been? For everyone else, how are you handling all the changes you've had to make? How have you reconciled the feeling to find some positivity? Thanks, -K
  22. Hi Becia, I hate the prep. It's seriously the worst part of this. I've had a couple of these, and honestly, I feel fine afterwards. I normally eat, drink and enjoy having an afternoon of leisure. Yes, you might be a little light headed/dizzy, but you might surprise yourself. I talked to my doctor and had them run fluid for me in recovery. The wonderful "knock you out" drug they have used for mine gave me incredibly good rest. I mean, real rest. Not setting an alarm to wake up and drink some water kind of sleep. But a real nice blissful short nap. If it wasn't for the prep, I'd honestly do one of these whenever they asked without all my arguing. I was completely freaked out the first time, and I came through ok. I came home after spoiling myself with lunch out, and collapsed to finish the nap the test started. I had some residual weakness, but I wasn't that upset. This could perhaps be because I always look at one of these as a cleanse, and let it bring healing instead of poor health. You've had a lot going on. And your body isn't completely over the surgery maybe. I can totally understand your desire to have more information and go in prepared. I am glad you will have somebody to stay with and let you rest as much as you can. We all seem to react differently. Good Luck! -K
  23. Hi Sarah, Sorry to be so long in getting back to you. My Doctor and I talked about what would happen this summer when he thinks he will have me in good enough shape to do this switch. These are the most general of his instructions, there were things specific to my care which aren't germane to this discussion. Nothing below should be considered as medical advise. 1. I would need to be stable enough to do this hand off. 2. I would need to be able to take a week or two and not plan to do a blasted thing. 3. I would wear a monitor for at least 2 weeks and send him the info. ( he said he will have to look and see how things are going, and he might make me wear one 6 weeks) 4. If I felt any kind of heart discomfort, I would go straight to the ER. (which I would have thought of myself...but he was just stating it for the record) He was very very clear in telling me he would only let me do this at home if I found some sort of stabilization in the next few months. He feels I wouldn't know if something was wrong as quickly because of the up and downs. I've become pretty in tune with things, but I will admit to ignoring symptoms and pushing through when I feel something requires my attention. He also knows how well I don't handle being in the hospital. So he's willing to work with me. He said insurance wise, this can be a nightmare, but he could get me admitted if I felt like it was something we needed to do based on the fact my heart has taken a little damage from all this mess,and I would need to be monitored. He said insurance companies are "sketchy" (his word) with a medicine not exactly approved in the US, but that there are always ways to make sure a patient is safe. I know I have been asked to stop my heart meds when doing certain tests. I've always been comfortable, and knew what to expect. So I feel like this is totally doable for all of us. I don't know if this is helpful to you, but I wanted to share it anyways. Let me know if you have anymore questions or stuff. I pop in here a couple of times a week. Good Luck, -K
  24. Oh my gosh. My cardiologist and I were trying to figure out how to order this for me. I see him this afternoon. I love synergy!!! Totally bringing this up. I am on highest does of beta blocker, calcium blocker, and they add in a little digoxin to keep it complicated. I would love to get off all of these. My husband also worries about monitoring me if I was able to get the script. I'm comfortable monitoring myself. I'm pretty in tune. But I know there are serious risks coming off all these meds. I wonder what my cardiologist will suggest... I probably will be too tired tonight, but I'll try to post tomorrow what suggestions he has specific to my case which may help you use specific terminology with insurance folks? We can't give medical advice cuz that's dangerous, so I'll try to ask for how to say things. I have an awesome cardiologist who talks like a normal human. Thanks for bringing this back up. You have no idea how excited this makes me. -K
  25. Hi, I am so sorry you had a frustrating experience. I like the idea of getting the raw data. Maybe you can run with that. My HUTT was almost an hour long. I started with a heart rate in the 130's and a BP 130ish/90ish. This is normal for me now. While I felt bad, I had no idea how bad it could get. They flipped me up and my heart rate rose to the 160`s and stayed there for the hour I was upright. I felt fine for a few. About 7 or so minutes in, I started to feel hot. This increased until I must have resembled a melting candle pooling on the floor. A nurse kindly started wiping my face because I was literally rolling in yucky sweat. I started to get nauseasous. I wanted off that table now. About the time I started to start to ask to quit this nonsense, they lost my blood pressure. 3 cuffs failed to find it. Sigh. We were about 30 minutes in and I am leaning on the belts, panting, sweating and considering if they would charge me if I broke the table as I fought my way out of it. The Dr is hovering over me asking if I am going to faint. Things are foggy about here, but I think I said some unflattering things about doctors and such with some explicatives laced in there for good measure. By minute 44, my blood pressure bottomed out with my heart rate still in the 160`s. I was toast. No need for any meds. I had sweated so much my body was stuck to the table. Yick. Within 5 minutes back horizontal, I was back up in a nice zone. And felt so much better. I will also repeat that I went into this test thinking it was a total waste of time. Imagine my surprise. Ha! Perhaps they let mine go so long because I came in elevated and dropped so fast. I have no idea. I am also haunted that some doctor is gonna want to do another one of these. I don't know if I am that brave. Everyone reacts differently. Our bodies are uniquely made, and while I am almost convinced I would like to trade in my body under some kind of lemon law, it's what I've got to work with. -K
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