AllAboutPeace

Peregrine: Thank you! I really appreciate you sharing your wisdom about this - it is very tough to think that you are letting your kids down, so it's helpful to know that you didn't feel that way. I'm sorry that you had to go through all of that as you were growing up.

This is a good question, Kat. I think it's helpful for us to hear each others stories so we know we are not alone. I wake up anywhere between 8:30-10am. It takes me about an hour before my body is ready to move out of bed. I feel like my body goes into a type of 'hibernation' at night - I don't get up at night to use the bathroom and don't need to go when I wake up (which I always thought was odd given the amount of water intake - 2 1/2-3 L - I have through the day). Luckily for me, my son is 12 so he can do his own thing in the morning (at least in the summer - during school my husband helps). I feel very fortunate that we have great neighbors and kids in the neighborhood for my son to play with. When I am up for social interaction, I sit on my front porch swing (with my feet up) and someone from the neighborhood usually pops by for a visit. I can't drive or shop (because of my symptoms), so I rely on my husband to do all of the grocery shopping and really whatever else outside the house that needs to be done. I'm well enough now that I can function a little better around the house (often can prepare meals and can do some light housework - which I couldn't do at all before). Everything I do is a 'modified' version of before i.e. a stool in the kitchen for cooking; a small fold-up stool for the car so I can have my feet up while going anywhere; sitting on the floor to dry my hair, etc, etc. I do need to lay down or sit alot to rest or reduce symptoms throughout the day and my standing time is quite limited. I do push myself to go out (even if it is just for a drive while others do errands,or to my husbands ball game etc) whenever I have the opportunity (which is usually a few times/week). If I have an outing or doc appt planned, I will wash my hair the day before because showering and washing/drying hair - plus an outing is just not going to work. I also need to rest prior to going anywhere and I know that I will need recovery time when I get home. Depending on the outing, that can vary from an hour or two up to a day after. Every outing requires gatorade, water and usually a snack of some sort, a place for me to sit (with feet up), minimal walking, etc. I remember when going out to dinner was a nice treat, but now it is soo much of a chore and I know I'm going to feel awful so most times I just opt out. Healthy people say to me all the time: "I would go insane if I had to stay home all the time like you do." , so I explain to them that it's different when you are sick (at least for me) because I never feel well enough to want to go out. I told someone a few days ago, to think about what it feels like to have the flu and the last thing you feel like doing is go shop, hang out, to dinner etc when you feel like that. That seemed to really register with them, so I'll probably use that one again. I do pop on the recumbant bike whenever I can for a few minutes (7 or less at a time seems to be my max) and push myself to keep moving around in short spurts and do more around the house whenever I can. Re: childcare. I know it's easier for me because my son is old enough that he can do some things for himself. Kids are amazing though. I have worried about the impact that this illness has had on him (especially the early days when I was really sick) and how it has changed our relationship, but in the end we can only work with what we have...so we just try to make the best of it. I've been very careful to try to minimize this as a burden on him in any way, but he's naturally a very helpful kind of person though, so he's always bringing me what I need before I know I need it. I've always been very active with him and that part has been very hard because I can't do any of that stuff anymore. Last week, I took a sturdy stool for me out to the driveway where he was playing basketball and told him I was going to try to play a game of "21" with him. Well...I was so blurry eyed and pre-syncope after the first basket that I had to stop after a few minutes...but that was after I somehow managed to sink 8 baskets in a row from the stool...so he got a great laugh out of that. My days are all the same, too. Still waiting for a good one...

McBlonde: did you really stop taking it without weaning down?? Did your high BP and edema settle out after you stopped it?

Very helpful...thanks Alex

Thanks everyone for all of the great info, tips and experiences! Bren: I love that "meh" is a word - it's a small little word, but the meaning is completely understood. McBlonde: So, you just stopped taking it...no tapering or anything after that many years on it? Wow that's amazing (and good) that you had no ill effects from stopping it - I wonder why? HyperPOTS8: thanks for the tips on potassium and bloodwork. My local doc isn't big on follow-up. He quickly wrote me the Rx at the last appointment and told me to start after my next test. When I called to say the test was done and I was starting, he told the receptionist to tell me to go ahead - no mention of bloodwork or even a next appointment - ever. I told her that I needed bloodwork in two weeks, so she said she'd write him a note so he can arrange it...argh! My potassium was found to be low at the time of my initial double syncope/onset of Pots, so I'm a little curious/sensitive about that. Hoshistorm: sorry that you are having a hard time right now I hope all of the tears are marking the beginning of healing for you. I started my first dose of Florinef (.1mg) today.

Thanks, Dana! I looked this up again and I'm finding it listed sometimes as a mineralocorticoid and sometimes as a corticosteroid (i.e. Mayo has it listed as this and my sheet from the pharmacist) and sometimes mineralocorticoids are listed as a type of corticosteroid. ??

LOL I hate those dang commercials...

I hear ya, Naomi!! I keep thinking about what a struggle it is to go through the whole "disability" application process - even with accurate information about POTS, it's a nightmare. The last thing we need is this kind of completely inaccurate representation in the media. One of these days, I'm going to start writing letters too...thanks for doing this already both of you. Very frustrating

I really hope that poll makes sense...I was feeling like this when I was typing it. lol My doc thinks it's time for me to start a med. I haven't done any meds for Pots to date (9 months after onset) and none of us are happy with the lack of improvement in symptoms; exercise has been a struggle, etc, etc...so it's time... So, I went back through the forum and read lots of previous posts about peoples' experiences, but I still have a few concerns and questions. 1. Should your aldosterone/renin levels be checked prior to starting Florinef or does it really matter? Would this give an indication if this will help you or do the docs just 'assume' our current levels are off? 2. I have concerns about the possibility of being dependent on this med for life (if the adrenals don't kick back in). If I do have a temporary condition (which is what people still say at this point - would I really want to do something that will make a permanent change to my body??). I guess the answer would be 'yes' if I was able to be a participant in life again. Any thoughts? 3. My doc wants me to start on .1mg, but I've noticed that others have started on smaller doses and worked their way to the right dose. I was curious about the every second day dosage and wondering if that would make it easier for your adrenals to pick back up again when it came time to stop ?? 4. Does everyone have regular bloodwork done to check potassium levels? 5. I read that you have to let any docs or dentists know before you have surgery or emergency treatment if you are on this med because it is a corticosteroid (and using it for a long time can make it difficult for your body to respond to physical stress). Does anyone have any info about that or know what exactly that means? I'd appreciate any wisdom you have to share.. Thanks!.

Thanks! Hmm, so if it is from temperature change, I wonder if it was from being cold outside to then eventually warming up under all the layers and blanket when I came in - or if it would have been from just getting suddenly cold outside because I was fine and then cold?? Do either of you consider this a POTS thing or is this something you have had before? NMPotsie: I'm curious..how did you to the at home test?

Thanks for posting this, Ashelton! It does make alot of sense for me when I read through it. I think the fact that we need 'good rest' gets missed at times. I can see now how much I pushed my body before I got sick and it literally got to a point where it could be pushed no more. It's actually pretty scary to think that people could be in a situation like that and be told that they need to do aerobic exercise as a first line of treatment- it's counter-intuitive. Bren, I'm looking at starting Florinef and I just took note of your comment about the '2 sizes increase' - yikes !! I've already had that increase over the last several months...lol

Oh my goodness...reading your story definitely makes me want to give you a cyber (((hug))). You certainly have been through alot!! ...and you endure 2500 PVCs/PACs per day! Your symptom list definitely sounds like POTS and the onset after the, by the sounds of it, traumatic birth of your DD is similar to the onset of others with POTS. It is not unusual for some people to experience times when they are less 'potsy' than others, so I would say it is possible to have it even if you have a negative TTT, especially if you are noting the 32 bpm's on your wrist monitor. I think it would be worth asking your doc to do the 'poor man's tilt' and let him/her know that you are getting the results that you are at home. That's great that you are getting those kind of results from an abdominal binder...I'm thinking maybe I should get one.

Does anyone get hives from feeling extreme cold or heat? I've noticed this "rash" on my back (covers most of it) a few times since my illness (it comes and goes), but it never made the priority list for discussion at my docs appts. Earlier this week, I noticed it and took a picture as it was quite inflammed and I went to see my family doc about it today. He confirmed that it is hives (urticaria) and talked about the possible causes. I couldn't pin it on any food that would be an obvious offender, and then he mentioned that it can be caused by extreme temperature changes. I immediately recalled a few days before when I had been sitting outside with friends in the evening. I had three layers of clothing on (much more than everyone else) and when we moved inside, they were in tshirts and added a fan to the room, but I had already gotten chilled from being outside, so I kept all my layers on, plus added a heavy doubled over blanket around me as well. That was enough to keep me from getting the really nasty teeth chattering; almost convulsive shaking that it would normally progress to. My doc recommended anti-histamine. I'd love to hear others experiences...

Batik, Would you be able to add a "none of the above" to your categories? I don't have an answer for question for #2, but it wont let me skip the question. Thanks

I think the idea of "wanting to lay down" and "needing to lay down" are different concepts that need to be looked at. I do have simple Pots - my EP tagged on "electrical problems" with my heart, hypotension and vaso-vagal effects, but personally, I consider those under the POTS umbrella. In the Changes video the stats indicate that 25% of people with Pots are severely disabled and are unable to work or function enough to perform basic household activities. I think it's important to figure out approximately where you are on the spectrum and how that could affect outcomes of certain activities (i.e. exercise). Many months ago when reading about exercise on here, lots of people were talking about "pushing through" the fatigue, symptoms, etc. That concept meant nothing in my world, there was absolutely no pushing through for me because my body simply couldn't tolerate it even at the times that I felt I had the energy to do it. That is not for lack of determination or will to get better - just a physical fact. Anxiety or fear does not limit me, but my physical ability definitely does. After 9 months of this, I'm appreciating the fact that since last month I can actually remain upright to brush my teeth! I agree that we need to challenge ourselves, but those challenges are going to be completely different for all of us. It's all about knowing yourself and knowing how far you can push and when {as if that is something simple to figure out } I'm definitely not anti-exercise, because I have always been a physically active person and truthfully one of the hardest things about this whole thing for me is trying to accept the fact that I can't be playing baseball, football, soccer, tennis; biking, hiking, geocaching, etc, etc with my son - that is the stuff I live for. As I mentioned, I believe whole heartedly in the benefits of exercise, but I'm not sold on the idea that exercise really is anything other than a temporary fix for Pots - (at least for some people). Many of us were active when it first came on and we all have heard stories of those who relapsed while continuing to exercise. There are those who do the 3 month program and whose symptoms come back as soon as they stop - wouldn't that indicate that it is more of a band-aid than a cure? {Don't get me wrong...I would gladly take a band-aid right now...} I also don't want to be negative about it, but I believe our potential "fixes" are as complex and as individual as we all are. If exercise is working for you - that's wonderful !! It is an accomplishment for anyone with Pots !! I would be doing it if I could...

tpots, How are you feeling now? I think you would be justified in going in to get it checked out if you have not experienced this combination of symptoms before and it is still concerning you. Even if it ends up being just a Pots thing, there is no harm done. Either way, you could probably benefit from some hydration. Hope you are feeling better soon...

I followed the link to the main article from Journal of Physiology http://jp.physoc.org/content/590/15/3413 . This is how it describes onset of POTS. "POTS is a syndrome that is diagnosed far more frequently in young and middle-aged women than men, and by the time of definitive diagnosis patients have typically spent several years seeking expert medical opinion for their symptoms. Frequently, these individuals report a distant flu-like syndrome followed by a period of inactivity, followed by more inactivity in response to the unpleasant sensations they have while standing or doing mild physical activity. Thus, a downward spiral of inactivity and deconditioning occurs. This downward spiral can be made worse by related perceptual issues including somatic hypervigilance and fatigue that can be improved with exercise training (Benrud-Larson et al. 2003; O'Connor & Puetz, 2005). However, when these individuals seek medical advice their responses are seen as abnormal and frequently pharmacological treatments are prescribed (Joyner & Masuki, 2008)." This kind of onset could certainly explain the "deconditioning" aspect they are looking at - but how many of us is this true for??? I know it definitely wasn't the case for me - and I know I'm not alone - (as hholmes and Relax have already shared). I went from exercising/ being active/ working full-time/ from all appearances healthy to completely disabled in a day !! Relax86, your early symptoms sound just like mine. I would use every ounce of energy to get myself dressed for when my son got home from school - I'll be doing well today if I can shower by suppertime (bad day)... I do force myself to exercise even when I have to drag myself out of bed to do it...but even on a good day the max I can do is 6 mins at a time on the recumbant bike (and that's after 9 months). I really can't push my heart. Maybe it's better that my primary POTS doc isn't up on reading the latest theories Argh...

Jangle, My improvement from saline lasted probably around 30+ hrs. I got it one day just after lunch and it lasted until the next night I went to bed. I got 1L. The morning after the saline was the one and only morning in 9 months that I was actually able to get right out of bed...every other morning it has taken me between 45 mins-1 hour before I'm ready to move. I can't even swallow a pill until my body has been awake for at least 1/2 hr. So the saline made a huge difference for me. I hope it helps you!

Wow, there are so many scary symptoms that we experience all the time - it's hard to narrow it down... - When my hr goes into the 40's when I'm upright and it makes me cough. I would prefer tachy anyday compared with this feeling. - Once I was sitting at the computer and started to swallow (just saliva), but the flap that closes over allowing you to swallow or breathe, closed right over and locked up so I couldn't swallow or breathe. After the initial terror feeling of the moment, I forced a cough which opened things up again. The funny thing though, is that as soon as it was over, I went right back to the computer to whatever I was doing. It's amazing how unfazed we can be with such a mixed up ANS. - When I wake up with my heart in a 'spasm'. I've not been able to capture this on a monitor, so I don't know exactly what's happening, but I wake up and my heart is stuck in a crazy vibration. It's not a tachy episode (because I get those at night too). It feels like it's not actually beating at all, just in a spasm and it causes me and the whole bed to shake/vibrate. My regular hr monitor can't read it at all. So, I try to take notice of everything that is going on so I can later describe it better to the docs and at the same time try to figure out how to slowly bring my heart back to a normal rhythm because it feels like an abrupt change would not be good at all...scary.

I don't know what causes this, but I experience this too. It was at its worst a few days ago when I looked at the computer screen and it was all fuzzy. I often get this peripherally as well, so I look twice to see if there is a bug crawling across the floor. As I'm discovering with most symptoms lately, it seems to be exacerbated by heat.

Steph, Just curious, what is your heart rate? Were you on any meds at all at the time of the test?

mama_destiny, I noticed it's been a few weeks since you've posted this- has this levelled out for you? I have definitely felt what you are describing - it was at it's worst during the first three months I was sick. I think it has gotten better partly because of the increase of salt and water and partly because I learned that I cannot lay on my back at all (even if I'm elevated with pillows. I have to sleep only on my right side (don't know why that works for me??). Whenever I end up on my back sleeping, I end up waking with a choke; or when I was in hospital my monitor beeps would wake me. My hr goes into the 40's as well and my resting rate is typically 50's. My EP is checking for Central Sleep Apnea, which would be consistent with other symptoms as well and this can go along with dysautonomia. Early on in my illness, I actually asked my husband to stay with my a few times while I went to sleep because it simply felt like my body would just shut down (like it was just 'too tired' to function). Have you had issues while sleeping?

Welcome to the group! I'm sorry to hear that you are on this journey... I had the sudden onset of illness as well, which as you mentioned, is an abrupt change from a previously healthy lifestyle...and they are many of us in that situation. It seems very individual as to whether or not you want to pursue a cause. Personally, I feel like I'm at peace with not knowing (and because there are no clues at all pointing to it), but that may be the stage I'm in right now. I may feel differently if I continue to have no improvements in symptoms. You just have to do what feels right for you. I think comments like the one your EP said are meant to put our mind at ease (i.e. it's not life threatening), but you are exactly right that those kind of comments are not helpful at all. I think it is really important to give your docs a very clear picture of your day to day life, especially when they have no experience with POTS and when you are in a position to be applying for disability benefits. I found that I could never seem to get that point across to the docs during the appt. because there are so many things to discuss and my brain stops functioning effectively part way through. So, I started bringing data with me (blood pressure/heart rate readings from 2x/day in chart form); any extreme symptoms are noted; a list of current symptoms; how it affects my life (i.e. can't drive; can't shop, etc). My hope is that when the docs sit down to fill out the forms, they will refer to this info (even if they state "patient reports feeling..."; it's better than just me saying it). So far, they have been happy to receive it. I keep it brief and concise, so they can read it at a glance.

Oh, Bren, I'm so sorry you went through this I hope someone will be able to help you find out what went wrong. Have you reached your doc yet?

Ha, that's funny! You may prove yourself to be a good consult for the instructor. It's not like aldosterone is something people commonly know about...I know most people I've ever mentioned it to have never heard of it.