AllAboutPeace

Kris, Sorry you had that experience today I hope you will find the right doc soon. I love it (sarcasm - sorry) when they tell you that your symptoms (vibrating feeling) are 'definitely not' something (adrenaline or NE levels), when they have no clue what is going on... They would probably think that most of our symptoms could never happen. Keep searching - tomorrow is a new day!

low potassium (at onset of Pots - no meds) low hematocrit elevated prolactin low thyroid

Bahaha...yeah it's possible...

Rachel - I don't have a pacemaker. Partly the reason I think it has to do with my vitals is because I also would wake with a 'choke' at times but I'm never sure whether it was my heart or breathing that is causing the issue (other times I've woken with wacky rhythms), so I like to be hopeful and think that this surge is a way of keeping me out of trouble. It doesn't neccessarily coincide with an increase in hr though. I have also had those "core tremors" while sitting on the couch. At those times, it seems related to something I'm eating because it is almost like clockwork - 20 mins after eating and lasts about 40 minutes. I have tested out foods to see if I get the same response everytime, but I don't. I would love to be able to figure this stuff out...

No, I'm not visibly shaking - it's the internal shaking/vibrating. It's such a weird thing. My husband isn't the most observant at times, so I'm surprised he noticed it

I have had this too. The first time I became aware of it was when my husband woke me with "why is the bed shaking?" I was on no meds at the time (about a year ago). I still have it sporadically now (while sleeping) when I'm symptomatic in other ways. For me personally, I *think* it's an adrenalin surge in response to my low HR/BP while sleeping. That's speculation on my part but I know those numbers drop during sleep and my baseline numbers before bed are alread low. I don't have flushing, but have had some other issues that have come up since pots like dermatographia, hot/cold urticaria(hives), unusual rash from the sun which definitely indicate sensitivities that I've never had before.

Yes (and yay!) I am able to tolerate some alcohol now. I'll take gladly take that little escape from the everyday of trying to figure out these crazy symptoms. My initial introduction to Pots was after two drinks in a public place and it ended badly ( and not without public embarrassment courtesy of Pots;). After about 10 months, I was ready to try it and it seems to go well. Wine...not so much, but beer or rum/vodka are ok. I am careful about it though making sure I have lots of water and only at times when symptoms seem baseline for me. My suggestion would be to try it at home and when someone is with you Cheers to all (even if for now you are doing it with water

I am not Hyperpots, but during the first few months of my illness, I had surges that would come on often while sitting and/or laying down. I actually feel that if I had been tested then I would have been diagnosed Hyper. They could be triggered by any kind of movement around me (even on a tv screen), by shifting positions, any kind of sudden noise or stimulation, etc. But other times, especially at night they would just come on at random. For me, they were not associated with anxiety feelings at all - my sympathetic nervous system was just really mixed up. There have been many threads on here as well about getting these surges at night/ waking with them, etc., so I have always thought of it as a 'Pots thing'. After a few months these settled down for me and my sympathetic system for the most part seems to have worn itself out (as my baseline is more hypo and brady now). I do still get those surges sometimes now, but it's almost always during a crash/nap, so I think it is trying to compensate for for something else being too low (bp/hr) at the time.

Naomi, I'm home most of the time, too, trying to figure out all of these crazy symptoms. As you mentioned, I could go out for briefly, but in the end it has to be something that I really want to do in order for it to be worth it. I totally relate what you are saying about being the same person on the inside, but not being able to act on it. We kinda need to find ourselves again. What is really working for me right now, is to surround myself with positivity. I will often listen to TedTalks ( http://www.ted.com/talks ) - you can choose whatever category you like (inspiring, funny, courageous, etc) and whatever time frame you have to listen. There are so many awesome stories and ideas that people have - it really helps to spark that kind of thinking. You might actually find a new interest through that or tap into a familiar one. I love starting or ending the day with this. I also posted about this awhile back - free on-line courses (www.coursera.org) that start throughout the year. There should be something of interest for almost everyone. I started a Personal Finance course in January which is helping me to feel more organized in life and then I started a Fundamentals of Human Nutrition course. The nutrition course is really informative and there are three levels to it, so you can 1. just follow along and learn (no tests) 2. write tests and assignments for a certificate or 3. do tests, assignments and a big project for a distinction certificate. That course started three weeks ago, but anyone can still join if they just want to follow along and learn. Through that course, I was introduced to a helpful progam at https://www.supertracker.usda.gov/ for tracking your diet - if that is of interest. It will tell you if you have any specific vitamin/ mineral/intake deficiencies based on the foods you eat - as well as coaching you on your goals. I'm hoping that some diet tweaking will help overall health. The benefit of these courses is that you can do the video lessens whenever you can and pause or break in between. Some weeks or days it just doesn't happen, but so far it's working out ok. One of my courses has an enrollment of 90,000 including people from all around the world - amazing! I would never be able to commit to going to a class at a certain time or have the extra income to do it. Mostly, it just feels good to use my brain and feel like I'm contributing something to our household. I've also begun a weekly menu system which makes things much easier for me on a daily basis. Actually, I adapted a great menu/organizer that someone else created on-line. My husband does almost all of the grocery shopping, so the menu helps him to minimize his trips to the grocery store and being organized means that I always have what I need on hand. I'm sure we are saving money this way, too. The biggest part of that for me though, is that I don't have to waste energy during the day trying to come up what's for dinner. I find I only have so many decisions in me, then I'm done. Another quick pick-me-up is the website www.1000awesomethings.com The author came up with this website after experiencing some awful things in his life. He created it to help him keep going every day - starting at 1000 then counting down to 1. He added one awesome each weekday. I hope you find something to tap into your inner Naomi

I have this too, on both arms (upper arm shoulder area). It does look like paint splatters as some spots are larger than others. It is something that definitely came along post-Pots, for me. Thanks for the info everyone...I'm going to look into those things

Altruism, I just wanted to jump in about your docs comment about Florinef. I wont say it's a perfect drug (and I've yet to learn about a med used for Pots that is... ), but it made a huge difference for me. I did salt/water loading for 10 months and was functioning at about 20-25% despite trying many things to improve my situation (nutrition, exercise, rest, etc, etc). I started seeing small improvements in the first, second and third week, but after the fourth week, I was able to drive and participate in life again. I wasn't back to my previous level of functioning, but at the time I considered it about a 50% improvement. My previous inability to exercise even 10 minutes at a time changed to 25 minutes (which was also huge for me). I'm still playing around with the dosages now, but I found after the first four weeks I was able to drop down the dose to a maintenance level (presumably because my body was now retaining the salt and water). No amount of salt/water loading on its own was able to do any of this for me. We are all really different so I know it doesn't work for all of us, but it has definitely made a huge difference for some of us. It annoys me that your doc would just dismiss a med that at least has the potential to significantly improve someones quality of life. It's amazing that you are able to do that much exercise at this point! Have you noticed any improvements in your baseline hr, a reduction in adrenalin surges or symptoms in general?

Kris, I'm sorry to hear that you are finding yourself in this position - it's not an easy one The very best thing you can do, IMHO, is to stop - take your break- and take care of yourself. You are not a failure! Be as compassionate to yourself as you would be to someone else. I always felt that super sense of responsibility with work, too, but I didn't step back until my body completely shut down and pushing through was no longer an option. I was the one with the ideas, the dedication, attention to detail, trying to take care of everyone, etc, etc. It was very hard to let go, but my recovery only started when I was actually able to let myself off the hook mentally. I remember being hospitalized- just getting news that the docs found suspicious spots on my brain scan, my lung scan, a breast lump (that had grown), and I was only physically capable of flopping into a wheelchair or going to the bathroom. I was on my phone texting work to make sure things were followed up and feeling responsible for having left abruptly . My co-workers and boss were worried about me and the last thing they wanted me to be doing was thinking about work. They told me they'd take care of everything, but I still felt responsible. Since your boss had a stroke last year, I'm sure he understands how important your health is. Your boss will be ok and your family will be ok too- people adapt to all kinds of situations all of the time and you don't have to carry the weight of that. Maybe this will give others an opportunity to step up and pitch in a little bit more, but even if they don't, tomorrow will come and go and they'll get through it one way or another. It's so hard to have to come to terms with the fact that you can't do everything for everyone, but trust in the fact that it will be ok in the end. In hindsight, I can see how those in my life have gained perspective through all of this and although I would never have put them through any kind of struggle if I could help it, they have grown and have tapped into a part of themselves we might not have seen otherwise. It was their destiny as much as it was mine. Hopefully the month break will give you the opportunity to get yourself back to a better level of functioning. Since you said you've been here before and have improved, maybe a good rest will get you back on track. I think it's important though, that you take the mental break, as well as the physical. You have no need to feel guilt of any kind - dysautonomia makes it impossible to take care of others if you don't take care of yourself first. Is there any kind of financial support you would qualify for during the month you'll be off work? (I'm not in the US, so I don't know if you have options with this). (((hugs)))

Kelly, Thanks for sharing all of this. I'm just curious about the 'caffeine'. Did they say specifically why it is helpful? Is it for mental clarity or other reasons? I hope your 9 year old is recovering well from the surgery (and that you have recovered from the experience). My friends 12 yr old went through this recently and they just got her into surgery in time. Scary stuff!

Yes, this has happened to me. I had two syncopes within about 5 minutes or so and didn't remember the time in between when I apparently answered some questions. They said at one point I didn't answer, but stayed focused on them and appeared alert. Once they filled in the gaps, I had a very foggy recollection of the last 30 seconds before passing out again. I'm with you - that it's a little scary to lose that time!

Bren, Ya, it's not a presyncope thing for me either at one point I did think it was sugar related, but I don't know anymore. These episodes have picked up for me recently and **I also reduced my Florinef dosage from 1/2 tab to 1/4 exactly four weeks ago - so I'm wondering if that is playing a role here. I have been also feeling some discomfort in my neck (feeling the need to stretch/crack it; and some nasty headaches) - possible inflammation??? Katie, Wow, I did look up narcolepsy and it's eerily familiar. My "naps" are brief and I do have really vivid dreams (so I must be going into REM immediately). I also looked up Pots and narcolepsy and very quickly found people who have been diagnosed with both. I don't experience the sudden sleep, though, when people fall asleep while doing a task, etc. It's about a year wait to have a sleep study done... Did you have those same symptoms when you had it ruled out?

Hmm, this is interesting! I've skimmed over these discussions before, but never really had an opportunity to explore it. His speculation about the possible effect on the vagus nerve is interesting to me. About a year ago, I had a sneezing fit that resulted in several hours of feeling normal with normal vitals, etc. (I posted about it - http://forums.dinet.org/index.php?/topic/19567-reset-after-sneezing at the time). That has still been the only time in 14 months that I have felt even remotely like before and still wonder about the possibility that the vagus nerve had a role in that. It's crazy when you know that the dysfunction can just switch on and off like that ! (and why can't it get stuck in the "off" position for awhile... )

Oh my gosh...YES! I have had this over the last month or so with more frequency. It's such a strange, uncomfortable feeling. I haven't checked my vitals because when it hits, I just literally have time to lay down on the nearest couch or bed. To me, it feels like passing out laying down - the dart is a good analogy Sometimes I can hear things around me but can't react or move and other times I am completely out. I haven't been able to figure out a trigger. I always wake up after a short time (feels like 5 minutes but yesterday I looked at the time when i woke and it may have been 20 mins to 1/2 hour) with an adrenaline surge. It happens every time. I feel awful waking up like that and once the surge settles and I get over the grogginess, I can get up and function again. I'm curious about what my vitals are doing at the time because my baseline is already Brady and low BP. Thanks for bumping this thread!

I'm definitely worse in winter. I can't handle the cold at all. This morning it was -35C/-31F with the windchill. This is a particularly cold snap, but I have the same issues if it's 0 C/32F. If I have to go out, I have tons of layers on and I have to get into a warm vehicle. My blood feels more like sludge going through my body and I have chest pains. I was out briefly for my sisters b'day and have been back in the house for 2 hours...I still have my winter coat on, including my scarf, plus three layers of clothing underneath that!!! One of my layers is a 'heat' sweater which is meant for temperatures of -15C ! My house is warm, we have a propane fireplace and everyone else is walking around comfortably with one layer of clothing. I never get warm and I could actually very comfortably wear my winter coat around the house all the time - except that it is a little bulky I have that cold to the bone feeling even when I don't go out, so it doesn't directly have to do with exposure to cold. The summer is my friend for sure. I love the sunshine and the heat (although where I live it usually isn't much warmer than 30C/86F). Alot of days I layer up in the summer too. I have alot of blood pooling too, but I don't really notice if that is worse in the heat. I don't feel hot, though, so even if I'm in heat my body doesn't seem to absorb it. It's crazy that we are all so different with this, yet have temperature dysregulation in common (like everything else autonomic - I guess...). it would be kinda nice to just pick and choose our perfect climate...wonder where we'd all end up??

I found this TED talk video by Richard Weller, dermatologist, who has studied the effects of sunlight. It is 13 minutes long and quite interesting. There have been many Dinet discussions about how we are each affected (both positively and negatively) by the sun, so maybe this will give some more insight as to possible reasons why. http://www.ted.com/t...your_heart.html *POTLUCK has posted a link to one of the studies Weller talks about in an earlier Dinet thread. I thought it would be worth posting the video as a suppliment to that earlier thread. I, personally, find the talks easier to process than some of the medical studies...especially on the foggy days. Here is the link to POTLUCK's thread with some discussion about it... http://forums.dinet....20480-sunlight/ peace

Pumpkin, That's great that your surgery went well and you can put that part behind you!! I can imagine there would be some trauma & disbelief feelings about having gone through heart surgery. Have the docs/nurses given you any tips on dealing with that? It must be a very common reaction. I recently saw a mitral valve repair surgery on tv - it's just amazing to see how they can fix it right up- I really hope this helps you feel better. What have they told you to expect for your recovery?

That's great news, Issie! Soo happy to you see posting about improvements I hope the trend continues for you!

Me too!! It is the worst symptom for me and very unsettling. A few days ago, I was sitting through 45 minutes of the irratic fluttering in my chest and trying to appear normal (when it feels anything but normal!). My husband notices that I get 'quiet', but we both kind of pretend it's not happening until it passes (shared denial ). I think we are all so different in our situations and what may be prompting the arrhythmia's, so I'll share what my experience has been but I'm not suggesting that this would necessarily work for anyone else. Several months ago, I was reading up about arrhythmia's and read that the more you have, the more you get. Sorry...I can't remember the source at this point...and I can't remember if it was specifically A-fib that it applied to or others as well. Anyway, I decided to try to stop pushing myself for awhile and made it my goal to try to avoid any triggers. My functional level was pretty low at the time and I did continue to do the things that I knew I could handle (i.e. light meal prep - but not major meals with lifting because lifting was definitely a trigger for me). In my case, it helped and I actually went months without this being a problem and I did continue to increase my level of functioning, but at a much slower level. I would still have the odd flutter, but probably what is normal. I saw a return of these symptoms in early December (perhaps with increased activity related to Christmas???), so I, again, turned everything over to my husband and it slowed down for awhile, but this week is bad again. So, for me, I think there may be a connection with activity level...although that doesn't explain this week . I have also noticed that a trigger for me lately is position changes (i.e. bending over or quick direction shifts). That was the long answer, but the short answer to "does it wax and wane?" is "yes", for me, it does. I noticed in your signature that you've had A-fib. Would you recall what that felt like or be able to describe it? I've had a handful of times when I've woken up at night with my heart in a "spasm" where it feels like it's not beating at all (kind of like a super fast vibration). Of course, I've woken with regular tachy many times, but this is very different than that. One time I had my chest strap hr watch on and it couldn't pick up a pulse at all - and I've never had a problem with accuracy unless the batteries were running low. My docs weren't sure what this was and both told me that I should manually check my pulse at the time, so we would know if it was irratic. They questioned A-fib.

Totally agree!!! It really can be a double edge sword. I researched Florinef endlessly before agreeing to take it - and, of course, having no idea whether it would have any positive effects at all. I recently was asked the question: What was the best thing/moment in 2012? Without even blinking, I answered that it was being able to take my son for ice cream - just the two of us. (We kept it to the drive-thru, so there was no unneccessary standing) After 10 months of being housebound with little to no improvement and all of the nasty symptoms we go through daily, four full weeks of Florinef gave me back my ability to drive and feel like I could do some 'Mom' things again. It definitely didn't fix what is broken, but, Naomi and Bren, as you touched on, it meant everything to me in terms of quality of life. Bren, let us know how your ultrasound goes.

Bren, Oh no, sorry to hear that you have gotten this news I always hope to see that you are posting about improvements - not another thing to be concerned about! Are they planning to taper you off the Florinef completely or are they hoping every-other-day will be enough. Thanks for sharing this with the rest of us. ((hugs))

Hi Canadiangirl, Sorry to hear that you are experiencing this - the only thing predictable about Pots is its unpredictability It has definitely been my experience that Pots changes over time and my vitals have been in a lowering trend over the past several months (although the Florinef seems to be keeping my systolic in a stable range). Foggy01 and I were talking in a recent thread about the feeling that it seems for us that the sympathetic nervous system has 'burned out' or has stopped compensating for the OI. Like you, I still have bad pooling and the other orthostatic issues. I totally agree with everyone else that it would be a good idea talk to your doc about the BB because of the noted shift in your symptoms. Please let us know how you get along. *This is probably not an issue for you- but thought it might be worth a mention. Is there anything diet-wise that you have been doing differently? I've discovered a few odd reactions to things that have affected my BP and HR. For example, hours after I have a cup of coffee, my hr will go into the 40's and stay there. Also, I was mixing lemon juice in my water for the health benefits, but then noticed my already low BP was dropping significantly. It took me some time to figure this out, but I've since tested these reactions over again and got the same results. This would be soo much easier to figure out it we all reacted the same way to things.