AllAboutPeace

I'm sorry to hear that you hit your head like that...ouch! I hope you are ok. It sounds like your poor head has been through alot with all of the concussions you mentioned! Passing out isn't a frequent occurrence for me and I was lucky that the few times it happened I had people catch me. Are you able to pinpoint any triggers for passing out? Does it tend to be at a certain time of day/ before or after eating? During a certain activity? At a time when you are less hydrated? After you've been upright a certain length of time? Sometimes it can just seem random, but when you look back you can see patterns emerging.

It is a really exciting program! It's such an amazing way to provide opportunities for soo many people. I hope you find something of interest to you. I'd love to hear about anyone's experience with this.

That's exactly what I was thinking! I want to test my Potsy brain to see if it can still function. Thanks for this link! I was checking out some of the medical info on heart functioning - it's simplified and informative. I can see myself using this site for different things.

Puppy, Glad to hear that it went well and that they took Pots seriously - that in itself is a huge relief during the procedure. Hope you are spending your evening enjoying those saline effects

Imapumpkin, I don't know if you'll be checking in here tonight or not, but I just wanted to let you know that I'm keeping you in my thoughts and prayers as you have your heart surgery tomorrow. I posted it on here instead of in a PM so that others will be reminded to do the same - strength in numbers Wishing you a speedy recovery and please let us know how it went whenever you get a chance. ((hugs))

I know that this is the time of year, in general, that people start evaluating or re-valuating what direction they want their lives to go in; set goals for the new year, etc. For many of us though, because of our illness, that may be a completely new direction from the one that we were heading in before. I know that I, personally, have been struggling to find a direction that fits within my physical limitations. When I was sick in bed for days over the holidays, I was searching the internet for inspiration. I came upon a podcast of the "12 Best Ideas of 2012". One of the ideas was about Coursera, which was created by two Stanford professors. Their vision is as follows... About Coursera We are a social entrepreneurship company that partners with the top universities in the world to offer courses online for anyone to take, for free. We envision a future where the top universities are educating not only thousands of students, but millions. Our technology enables the best professors to teach tens or hundreds of thousands of students. Through this, we hope to give everyone access to the world-class education that has so far been available only to a select few. We want to empower people with education that will improve their lives, the lives of their families, and the communities they live in. Our Courses Classes offered on Coursera are designed to help you master the material. When you take one of our classes, you will watch lectures taught by world-class professors, learn at your own pace, test your knowledge, and reinforce concepts through interactive exercises. When you join one of our classes, you'll also join a global community of thousands of students learning alongside you. We know that your life is busy, and that you have many commitments on your time. Thus, our courses are designed based on sound pedagogical foundations, to help you master new concepts quickly and effectively. Key ideas include mastery learning, to make sure that you have multiple attempts to demonstrate your new knowledge; using interactivity, to ensure student engagement and to assist long-term retention; and providing frequent feedback, so that you can monitor your own progress, and know when you've really mastered the material. We offer courses in a wide range of topics, spanning the Humanities, Medicine, Biology, Social Sciences, Mathematics, Business, Computer Science, and many others. Whether you're looking to improve your resume, advance your career, or just learn more and expand your knowledge, we hope there will be multiple courses that you find interesting. So the reasons I thought this would be great for us... 1. it's free - so we aren't limited by our financial situations 2. it's all done on-line, so we can do it when we feel up to it 3. it's available world wide 4. there's a wide variety of courses available - a few examples are: Intro Human Physiology; Genetics and Evolution; Epigenetics; Medical Neuroscience; Nutrition courses; Personal Finance; Smart Growth for Private Businesses; Songwriting; Intro to Guitar; Computer courses. *some courses require some basic knowledge in the field, but many are intro. 5. it may help some of us get new skills, which may help for career changes or if/when we are able to re-enter the workforce. For me, I think I need to feel like I'm advancing forward in some way even though healthwise I seem to be at a standstill. The link is https://www.coursera.org/ where you can see the list of participating universities. Harvard and MIT have also collaborated to offer free courses as well at https://www.edx.org/ I hope this info is helpful

This posted info by Rama has slot of great info about licorice root.

I have had the exact same thing and I've posted about it before too. It does feel like my SNS just gave up or possibly burned out. In terms of dealing with it, unfortunately I haven't really found anything that helps this. What I can tell you is that my body did adapt to the new HR over time. So at first I felt horrible/like death with a high 50's HR, then I felt that way with a mid 50's HR, etc. Now I feel ok with a low 50's HR. It did become my new normal. Now it's the mid 40's HR that makes me feel awful. I haven't been back to my EP since I've noted this trend, so I do plan to discuss it with her. Her appts are really backed up. My SNS was extremely overactive in the beginning as well, but now I usually only feel those surges when it wakes me from sleep. It does feel awful and I can totally relate to your description! How is your BP?

That's great, Jangle! I hope it continues for you

Jangle, I saw my biggest improvement from Florinef during week 5. Its interesting that you are noting a similar experience. The improvements were huge for me at that point. It seemed to take that amount of time to work, for me anyway. I'm actually debating whether i need a dosage adjustment again. I started at 0.1 for 4 weeks, but found bloating etc to be an issue, so I cut back to 0.5. I've been having some backsliding of symptoms so it is possible that amount wasnt enough to maintain the volume level over time (???).

I hope things have settled down for you now. I do have resting brady's all the time and for me it seems to be part of the dysautonomia. My resting HR when I first got Pots was mid 60s as a baseline now it's somewhat amazing if it's higher than low 50s and i hate when it's in the 40s when I'm going to sleep (because I know it drops then) or when I'm up and around. I do have other rhythm issues as well and it seems for some of us, the autonomic dysfunction presents that way. In my experience my EP and other docs aren't concerned about the brady's as they are now. I have also had what you describe when your standing HR doesn't go up either. For me it actually feels 'stuck' in that low zone and I have yet to figure out how to get it unstuck. I have tried caffeine and very mild exercise (because that's all I can physically do at the time), but none of those things work - probably because it's neurally mediated.(that's a guess of course). Usually I have to sleep in order to have it reset - even though it's unsettling to go to sleep like that Hopefully this is just a passing thing for you based on a reaction to the medication, but either way I know it can be very scary. ((hugs)) Have things settled down? How was your night?

Pumpkin, I am soo sorry that you are going through this That guy is unbelievable!! And his behavior is incredibly immature and selfish. This is his issue- not yours and you do not deserve to be treated like that (especially with everything you are dealing with right now). You need to surround yourself with people who are supportive and give you strength and he is clearly not one of those people. I know it hurts, but you are strong and to live with pots (plus your cardiac issues) you have already proven yourself to be a survivor. (((hugs)))

Seattle: Lol..I can just picture the doc coming up the walkway with a TT strapped to his/her back I'm not sure if you are someone whose orthostatic symptoms ease up a little as the day goes on, but it is common for that to happen for some potsies. I know that I've read somewhere that it is a good idea for that reason to have your tilt in the morning - so you can be sure it's giving an accurate picture of what's happening. Just thought you might want to keep that in mind, in case it applies to you. I'm with you on the early mornings though, I don't schedule appts before 11...

Thanks for the responses, I appreciate knowing that I not the only one that feels this way. It is hard to accept that a sudden change like that isn't related. For me, that's where the appeal of a holistic doctor comes in (although I've never been to one); the philosophy that everything is connected really makes sense - especially with Pots (since it affects us in so many ways). I wish the medical system worked that way instead of having to see different docs for every problem. How long would the docs have to go to school for that one though...to specialize in everything Canadiangirl - It's great that you are able to view all of your ecg's. Some days I wish I had them and other days I'm not sure I want to. That's really interesting with regards to the T-waves. Hmm, I've never had a standing ecg, but I did do a lying-to-standing on my last event monitor, just so they could see what the tracing looked like on a 50 bpm jump in HR. I always assume they'll tell me if anything looked unusual, but I can't say I have a huge amount of faith in that anymore. I had a copy of it briefly to bring to an out of town doc and am now wishing I made a copy of it for myself. Mytwogirls - it should definitely show on a Holter Pumpkin - I really hope your surgery improves your symptoms. It is impossible to know how the MVP and Pots have affected each other. It's been almost a year since I've had an echo and I'd really like to see how things look at this stage. Joyagh - How do you manage with that many PVC's /day?? My arrythmia's left me for awhile, but the last few weeks have been back and have been worse the last few days. Kitt - It makes sense that Pots is a 'neurally mediated heart condition' and I do plan to discuss this with my EP when I see her next. She briefly mentioned that she could do surgery to fix the arrythmias (if they continue to be an issue), but if it's not an issue originating with my heart then there really isn't any point. Also, I've heard that it can make Pots symptoms worse.

Leigh, I think your idea about a medic alert bracelet is a good one- so it can speak for you when you can't speak for yourself. I argued with my coworkers when they wanted to call an ambulance for me after I passed out. I lost the battle when I passed out a second time - they called when I was unconscious

Joyagh, Thanks for your concern...sorry I didn't even think to add this in . I did have a follow up echo in which they ruled out cardiomyopathy - so whatever my heart was doing during the stress test was not due to that.

A current thread about cardiac symptoms has me thinking about this... I've always been a little uneasy with the medical reports/articles that cardiac testing is "normal" in Pots patients. I understand they are really saying that the basic structure of the heart is fine...but I think it's worth some clarification in the literature. For example, when they list symptoms why don't they indicate that "other rhythm issues or irregularities may be present" {aside from the standard sinus tachycardia}...or "tests may indicate changes in patterns, although usually benign...". Maybe the info is out there and I have missed it. I just know that before I joined this group, my understanding from the research was that cardiac symptoms (aside from tachy and chest pain) were not supposed to be part of Pots, but I've since read soo many posts about what others experience, which leads me to think otherwise. After the sudden onset of Pots, I had a pronounced murmur, mild mitral regurgitation, ecg changes (inverted t-waves), a stress test that my doc said indicated cardiomyopathy, irregular rhythms that nurses picked up on on my nighttime telemetry and various other ones I've felt {again aside from tachy and brady}, my EP/cardiologist says I have "electrical issues" which we are monitoring, etc. I realize all of these issues are not serious, and my cardiac testing was presented to me as "normal" - even though it is an abrupt change from before. My EP considers the electrical issues as separate from Pots, but I have a hard time viewing it that way because for me it happened at the exact same time as my onset and so many of us have these and other irregularities as well. Does anyone know if these issues are currently thought of as under the Pots umbrella? Any thoughts regarding your own experience or in general??

I also have issues with laying on my left side - so much so that I haven't slept on that side in a year. I've never been able to really isolate what the feeling is other than that it just feels wrong - like things are not functioning properly. I briefly mentioned it to my internist once, but there were soo many things going on at the time, it didn't really get a focus of attention. I did have mild mitral regurgitation on my echo (and I was examined laying on my left side), so I guess that maybe what the issue is ?!? Hmm, I'm curious now that I hear so many of you describing it and interesting to think that it could be connected to nerve pathways (E Soskis).

That's great Jangle!!! Congratulations You will be such a valuable member of the medical community...and I'm sure you will have some things to teach your instructors and classmates as well

Alyssa, I also have a love/hate relationship with coffee. I don't have that immediate reaction to coffee, but I've noticed that in the evening (when I've had an afternoon coffee), my heart rate goes into the 40's and I feel awful and sluggish. I haven't actual checked to see what happens to my vitals after taking it. I thought maybe mine was some kind of rebound effect from the caffeine wearing off, but I'm not sure. Have you checked BP and HR at the time to see what those numbers look like?

I have definitely noticed the same thing. When I was hospitalized they had a standing order to check my sugars when I started feeling symptomatic (because I noticed that I would feel some relief after eating). My sugars were fine, but I still notice the connection and I also have to eat something every few hours. Before pots, I could go a long time without eating and barely felt hungry. Michelle: gosh, that's horrible that you have to endure all of that:(

I totally agree with animal therapy. Sadly we had to put our 13 year old yellow lab down two weeks ago . He has been great company for me, especially over the past year when I was mostly housebound. Right now I can't imagine putting myself through that pain again, but i know I won't be able to resist an animal in need. For now we have three red foxes that visit our yard on a daily basis. They love to play and come when we call them, so they'll do for now

Hi Abby, I did a poll awhile back asking about Florinef use, so this maybe helpful for you. Here is the link: http://forums.dinet.org/index.php?/topic/21236-all-about-florinef-seeking-your-infinite-wisdom/page__hl__%2Ball+%2Babout+%2Bflorinef It seems very individual and I've tried to always keep in mind that there may be some that Florinef really worked for that don't frequent this group anymore. I found Florinef to be a really helpful med for me, but it is the only one I've tried so I really don't have the ability to compare it to other meds. I know that I was pretty much completely housebound, weak, symptomatic, unable to exercise, etc, etc. for 10 months before taking it and after a month of taking it, I was able to drive, felt well enough to want to go out for dinner, can do some 'Mom' things like take my son to his sports or a brief outing to the store if things are going well. I still have a long way to go, but it has helped me to feel like I'm at least a participant in life again (even if it is comes with lots of modifications). A huge effect that it has had is that it has given me the ability to exercise which in turn helps me to feel better on a daily basis. I hope it goes well for you whatever you decide

Leigh, You might want to ask your doctor about having your levels checked. My doc didn't mention it to me either but because of the info I had gotten from here and other sources, I called his office and told them I needed it checked. They called me back to say that it was ordered. If you have an appt soon you could ask for it, but if not, I would suggest calling. I'm not taking supplements but I do make sure I get potassium from food and my levels have been fine (checked 2 times so far and I've been on it three months. We are checking every three months now. I am only on a .05 dose daily, though, so since your dose is higher I think you should definitely check it out. My potassium levels were found to be low when I first was sick and it is something you need to be careful with.

I just wanted to pop in to mention that there are cautions with taking Advil and Aspirin while on Florinef. The info suggests that you should discuss this with your doc or pharmacist before taking them. My nasty Florinef headache was not connected to an increase in bp and it went away the next day when I took 1/2 my dose. Once it was gone, the next day I went back up to the .1 dose without any problems. You might want to work out a plan for a potential Florinef headache with your doc before you adjust your dose, if you haven't already. Florinef has helped my symptoms (notably fatigue/ability to exercise some/spaciness) by taking me from 20% functional to about 70%, but hasn't markedly increased my low bp. I'm sorry that you are having such problems with migraines and I hope someone you have some relief soon.