AllAboutPeace

Sunshine! Makes a huge difference for me. Today is the first day of sunshine we've had in awhile, so I'm soaking it up. It's only 1 degree Celsius so I'm not in a swimsuit, and there is a foot of snow at my feet, but I'll take it... Joann, I hear you about waiting for spring, I don't handle the cold well at all either. As others have mentioned, trying to keep things positive. If I watch tv it's comedy or something pretty neutral. I also watch Ted Talks on-line that are inspirational, creative or funny. There are soo many 'ordinary' people doing amazing things - it does help to get me out of my own world for a little while. Music is also something that I rely on a lot, if I need a pick-me-up or something to relate to when I feel like those around me 'don't get it' and I'm too exhausted to try to explain. Like sunshine, music feeds my soul

Lol...I love the "jeopardy" comment - I can soo relate! Florinef does seem to help me with some of the brain fog. I really don't want to see the 30's hr, so I'm hoping I wont get there. That must have felt horrible for you. Glad to hear that the pacemaker has given you some improvement. I appreciate the info - thanks!

Did you have low heart rates before Midodrine? Your bp's must have been pretty low, were they? Mine are high 90's/50's, so I feel like it's manageable at that, but I'd love to be more functional - just weighing the options.

What side effects did you have? I know everyone's reactions are different, but I'm curious...

My internist is unconcerned about it, just said that some peoples rates sit lower than others. I might be more accepting of that if I was a well trained athlete or if it wasn't a change from before...but I couldn't be further from an athlete right now My resting hr started at about 65 when I first was diagnosed and has tapered down to about 50 now ( plus or minus 4 or 5). I seem to have adapted to the lower rates, so 55, then 50 made me feel really horrible at first, but now it's the 40's that make me more symptomatic. I'm way overdue to see my EP, so I have yet to see what she'll say. I expect that she wont be concerned about it either. I haven't worn a hr monitor/watch forever so if I feel it really low (and am not near my bp monitor) I will just feel my pulse and count "mississipi's" between pulses. I know that "one-mississip" between beats is about 48-50 for me. One time I was really symptomatic and got to "one-Mississipi-two" before the start of the next beat. Sometimes I just don't want to know... Thanks for posting about this. Are you going to continue to take the med at a lower dose?

Better "out there" than the alternative...some may say It's interesting that it has helped some populations, but that's a pretty big "Ewww" factor to get beyond...

Wow, I've never heard of that as a side effect of midodrine. I wonder why? A few docs have suggested it recently, but I'm a little curious about that side effect because I already have brady almost all of the time (except - usually- when upright). Hmmm. Did your doc give you any guidance about it?

Thanks for the info! I'm also a vegetarian (no eggs), so I really appreciate you bringing this up . Issie, I found a rather lengthy list from USDA of choline and the amounts in certain foods.Starts at page 11. http://www.ars.usda.gov/SP2UserFiles/Place/12354500/Data/Choline/Choln02.pdf I know I eat a bunch of these foods, but I highly doubt I'd be getting the recommended Dietary Reference Intake of 425mg/day. That's quite a bit. Some of the non-meat foods with higher levels are Quinoa (which is also an excellent source of protein), pistacchio nuts, flax seeds, sundried tomatoes, brussel sprouts, mung beans, lentils, chickpeas, etc. Rich sources of inositol are cereals with high bran content, lecithin, bananas, citrus fruits - oranges, grapefruits and canteloupes and green leafy vegetables. Other sources with less content are red/kidney beans, brewers yeast, brown rice, cabbage, nuts, raisins, whole grains.

Oh, wow, Jen, thankfully you trusted your gut and didn't wait that one out at home!. Very scary! Glad to hear you are back home and now on meds to manage it.

That's awesome, Naomi!! thanks for sharing that...and if you can pin him down on a time frame, let me know...

Katie that is exactly the same rash I identified mine as from the pictures. Thanks.

Wow, I am so glad you posted this! I meant to post about it myself, but kept forgetting. Are you able to describe how you feel odd or is it one of those indescribable things? I started taking D3 (1000iu), two weeks ago. The first day I took it, it didn't go very well. About 20 mins after taking it, I felt "odd" (well super-odd, because everyday feels odd ). I was sitting down and quickly went pre-syncope (almost fell off of my chair), my hr felt sluggish which usually means mid-high 40's. The odd feeling lasted about 40-45 minutes. I've continued to take it, thinking that my body just needed to adapt to it - who knows?? I've continued to feel 'off' and a different kind of fogginess in the back of my head/neck area when I take it, but it's not as extreme as it was the first day. Yikes, that is a HUGE amount to take if you are not feeling quite right on it ! Targs, thanks for the info.

I haven't had that rash, but since Pots, it seems like various ones keep turning up. (dermatograhia, urticaria, spots with loss of pigment, etc). I'd love to stop finding new ones Katie, I get that net like rash from sun (through clothing) too. Thanks for putting a name to it. I looked up the images of rashes. Yikes! There are some nasty rashes out there!!

Interesting question. As I mentioned earlier I only had a major event like that once and it started with feeling symptomatic (graying out) while sitting. The other times I get the (less visible to others) core tremors, I am usually laying down in bed or sitting (after eating). In some circumstances, I'm already feeling symptomatic (fatigued, sluggish, cold), so end up on the couch when the tremors start. Hmm, curious to know what others will say.

I'm studying nutrition and have recently been introduced to a website that tells you the Inflammation Factor (IF) of whatever food you enter in. The IF (Inflammation Factor) Rating™ estimates the inflammatory or anti-inflammatory potential of individual foods or combinations of foods by calculating the net effect of different nutritional factors, such as fatty acids, antioxidants, and glycemic impact. How to interpret the values: Foods with positive IF Ratings are considered anti-inflammatory, and those with negative IF Ratings are considered inflammatory. The higher the number, the stronger the effect. The goal is to balance negative foods with positive foods so that the combined rating for all foods eaten in a single day is positive. I've noticed a strong correlation between my reaction to foods and their position on the inflammation scale. Onions are one of the foods I do well with, too and their rating is strongly anti-inflammatory. Potatoes are listed as mildly inflammatory. Potatoes, I still eat sporadically, but many of the foods that I've phased out over time, show up high on the inflammatory scale. For example, I love bakery rolls, but if I eat one, I feel like I've gained 5 lbs in swelling. If anyone wants to check out certain foods the website is http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2880/2

Bumping this thread...for anyone who wants to learn more about how our bodies are meant to work... Introductory Human Physiology from Duke University starts tomorrow. Here is a link to the course description https://www.coursera.org/#course/humanphysio I'm just finishing the Personal Finance course and am in the middle of a Human Nutrition course. I have learned lots of relevant and helpful things so far and I recommend Coursera for anyone who has the time or circumstance to be able to do it. I think, for me, the best thing has been that it has helped me to feel productive again and I discovered that my brain can still function and learn (at least some days ). Plus I can apply what I've learned to improve my own situation (when soo many aspects of my current life are out of my control). There have been sometimes several days in a row that I can't even think about doing the course work, but the flexibility of the courses allow for that and I haven't fallen behind yet. If anyone wants more info, I'd be happy to help.

I had an episode like this early on in my illness (within weeks of sudden onset) when I was very symptomatic and weak- it followed constant chest pain, SOB and graying out. I also felt that bone chilling cold while it was going on. I don't recall feeling cold before the episode though. More common for me are the instances of core trembling (that doesn't produce the physical jerking) - that can shake the bed during or awakening from sleep, or after eating, etc, but that was the only time I had such exaggerated movements like in the video. I did also have pupil issues. I didn't notice it, but the doc did. He told me later that his initial feeling was that it was a brain tumor. Re: being cold: I'm curious about the fact that I don't seem to get those rebound heat waves that others talk about getting after feeling really cold. Also, I'm curious if others ever have goosebumps. I never get those since Pots and I never have that shivering to stay warm thing either. It's like my body makes no attempt to warm up at all. It seems like a cold from the inside out, too.

Charlotte, I hope you are able to find a wedge that works for you. I bought one for my son 12 years ago because he was a little guy (preemie) with nasty reflux issues and it was dangerous for him to be flat (we found out the hard way). Anyway, I bought an adult one because they had nothing for infants, and I found it almost impossible to get comfortable sleeping on it. I couldn't sleep on it without a pillow, but putting a pillow on top of it made my neck really uncomfortable. They probably have more options now for comfort, but you may want to look at a few options before buying or perhaps look up some reviews. It seems like the standard ones would be best suited for someone who sleeps comfortably on their back, but it might just take some getting used to. I'll be curious to hear if you find a good one - hopefully you will! For now, I'm just propping with pillows, too.

Hey Canadiangirl, You are not the first one here to have embarrassing Pots stories of one sort or another...and I'm sure you wont be the last... Everytime I read your posts I think to myself how much you really need a good, knowledgeable Pots/EP doc to help you sort through all of this. You have soo much going on with the extra heart issues, on top of Pots and given your history of already documented scary arrhythmias, when you say that these were 'super scary', it makes me think that a doc visit may be a good idea. I wish I could share my EP with you - my other docs just give me the deer-in-the-headlights look when I mention arrhythmias. I hope things settle down for you - soon!

Hi Lauren I definitely notice a difference with blood flow, too, when I'm laying still - unless I'm physically moving around it feels like my blood gets stagnant. I agree that the extra hydration might be worth a try. My mornings improved with Florinef, so I think it was at least partly a hydration issue for me. I didn't have the same symptoms, but extremely sluggish and weak (like waking from hibernation or something). As Sue mentioned, I wonder if blood sugar might be an issue. I found the following quote on this website:http://diabetes.webmd.com/tc/hypoglycemia-low-blood-sugar-topic-overview. I read in on a few other websites that morning headaches are also very common if you've had low blood sugar through the night. Mild hypoglycemia can make you feel hungry or like you want to vomit. You could also feel jittery or nervous. Your heart may beat fast. You may sweat. Or your skin might turn cold and clammy. As Sue mentioned before too, it seems that some of our Potsie bodies do have trouble with processing sugar, so even if the numbers are ok, we could still be feeling the effects of it. It would be an easy thing to check out - if the water didn't do the trick, I might try a middle of the night cracker snacking. I hope you get if figured out!

Misstraci, I had a nuclear stress test a year ago and I was really ill at the time, but I'll try to remember the details . It involved getting an IV with a small amount of a chemical (that's what they told me - I think Thallium {??} You have to wait a certain amount of time (maybe 20 mins?) then lay flat and have the scans done. It is quite an open scanner - kind of like a big arm that goes around you, so there should be no clausterphobia type issues with it (like MRI or even a CT scan). The scanning itself took a little while (maybe 25-30 mins), but it wasn't scanning the entire time. You lay flat and the machine moves around you. So, that was the 'heart at rest' scan. Next stage is the treadmill (just like the stress test - monitored by cardiologist, etc), then you wait again -perhaps 15 minutes - and go back to the scanner to have your 'exercised heart' scanned. I managed ok while I was actually on the treadmill, but 5-7 minutes after while sitting with my feet up (to prevent blood pooling), I crashed - had to lie down or pass out. At this point, there were no docs around just lab techs, so they were a little freaked out. I told them I'd be fine, just needed water and to get horizontal. They were running to the nearest computer to google Pots I do feel like there could have been some really great info in that scan if they had gotten me in sooner - apparently it is a good scan for picking up diastolic dysfunction. In the end I think it was about 1/2 hr before they got me back in to the scan. They will give you a warning that you will not be able to pass through an airport scanner until the chemical passes through your system. So, if you are planning to travel, you would need to have some documentation to explain why you are glowing . All in all the test was fine and I would say it is comparable to the stress/echo in terms of what you will need to go through ( except for the injected chemical). Are you having it done or just wondering about the procedure?

Mine are kept in the refrigerator as well. I found the following info on a website for Addison's. It's a statement from Bristol-Myers and was posted in 2008. That must mean that some of us are taking the original formulation. I wonder if there would be a different effect from the different formulations?? FLORINEF™ 0.1MG TABLETS Fludrocortisone Acetate FLORINEF™ (FLUDROCORTISONE ACETATE)- CHANGES TO MY TABLETS It is extremely important that you understand how to identify and store your Florinef tablets correctly. Failure to do so may result in your Florinef tablets not working correctly. Florinef tablets contain fludrocortisone acetate which is a member of the group of medicines known as steroids. The tablets contain 0.1mg fludrocortisone acetate. Florinef is used to replace hormones normally produced by glands attached to your kidneys. These hormones are missing if you suffer from Addison's disease. Florinef tablets are also used to treat salt losing adrenogenital syndrome, which is a different form of hormone imbalance. < >Why have my tablets and their storage changed? There are minor changes in the formulation of Florinef due to a change in the manufacturing site of Florinef. There is no change to the effectiveness of the Florinef tablets though.< >How do I identify my Florinef tablets? The colour of Florinef tablets has changed from pink to WHITE. The tablets are round in shape. They are scored on one side and have the markings 'SQUIBB' and '429' on the other side.< >What are the changes in formulation of Florinef? Erythrosine (E127) and industrial methylated spirits are no longer present in the tablet.Dibasic calcium phosphate and lactose anhydrous and monohydrate are not new excipients but are specified as per the guidelines. < >How do I store my Florinef tablets? Florinef tablets should be stored in a refridgerator between 2 and 8 degrees celcius.They should not be frozen or kept at room temperature or high temperatures on the shelf. The container should be tightly closed and protected from moisture. Keep the bottle out of reach and sight of children. < >How should I store my tablets when I am travelling or on holiday? Florinef tablets should be kept in a refridgerator at all times. They can be kept in cooler bags in periods where a fridge is temporarily unavailable but should be returned to a refridgerator as soon as possible.< >What happens if I store my Florinef tablets out of the fridge? If left out of the fridge, Florinef tablets should not be used. You need to contact your doctor or pharmacists for further advice in this situation.< >What happens if I take Florinef that has been stored out of the fridge by mistake? < >You need to contact your doctor or pharmacists immediately for advice and assistance.THE PATIENT INFORMATION LEAFLET FOR FLORINEF SHOULD ALWAYS BE CONSULTED WHEN TAKING THESE TABLETS. If you have any concerns about your medication, please consult your doctor or pharmacist. You may also contact Bristol-Myers Squibb Medical Information on 0800 731 1736 OR medical.information@bms.com

Kitt, It's been my experience that nothing with Pots is ever that simple I've never heard of that method of testing for Pots. A Poor Man's Tilt table test which is what docs do when they don't have immediate access to a TTT, is much more structured than this and involves standing perfectly still. So that would involve taking vitals while supine (being still for a minimum of 10 minutes), then standing perfectly still and repeating vitals at 1 min, 3 mins, 5 mins, etc. I've never gone beyond 5 minutes because they always stop me due to symptoms and bp starting to drop, so I'm not sure how often they check after that. If you are moving around or walking for 20 mins (if someone is capable of that), it could definitely skew the results. I know in my case, if I keep moving around, I can remain upright longer because the constant motion slows the blood pooling in my legs (potentially lessening the need for my hr to compensate). So, while the method you describe may indeed show the 30 bpm increase (between the two readings of supine and 20 mins) in Pots patients, the lack of it would not definitively rule out Pots or necessarily give a true picture of what is happening. There are all kinds of fluctuations reported by Pots patients, especially when you are able to engage counter-maneuvers. The hr may be well over the 30 bpm increase immediately on standing, but it could dip down below the 30 when checked at 20 mins, only to shoot back up again later. Kris, I'm glad you have noticed some improvement with the med. I hope it continues

bump...because of recent sleep discussions

I have lots of extra issues if I'm not propped up higher while sleeping - or if I sleep on my back (or left side... ). It might be worth trying to figure out an elevated pillow configuration that you can get comfortable with and/or, if you haven't already, check to see if there is any connection to your position at the time. I hope it will be a passing thing for you!