Kkb1216

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

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

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

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

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

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

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!

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.

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

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

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

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

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

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

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