AllAboutPeace

It's scary to think about what scares me re: a future with pots...I'm going to post in the "denial of pots" thread...

That sounds great, Emma! I know you have waited a long time for this! I'm with you on prefering the exercise as opposed to drugs. So much of what we experience is out of our control, but with the treadmill you have options - you can stop it whenever you want or need to. With the drugs, you have to ride out the effects and I agree with you, the sitting tachy surges are awful. I had a stress test/nuclear medicine scan and I did the exercise, but the woman after me opted for the drugs. She didn't have pots, of course, but she went on in great detail to talk with the nurse about how she felt. They talked about how absolutely horrible it feels to be that out of control of what is happening in your body - when your brain is no longer in control of regulating your functioning. It was scary for her to have her to have her hr excelerated, feel nausea, light headed, etc. The nurse said that he tells people that you will feel absolutely terrrible, but we will try to make you as comfortable as possible and it will be over in 20 mins. At the time of their discussion, I was laying down because I had become pre-syncope (while sitting with my feet up). As I listened to their conversation, I realized that they were describing my symptoms and how I had felt since the onset of POTS! It's crazy really because he had soo much empathy for what she was going through, but we sometimes get so readily dismissed for feeling the exact same thing...but for much longer than 20 mins...

This is a great topic! I'm always looking for books to read, but I like to read mainstream books that delve into personalities, are not violent or horror or really suspenseful. Monstrosity: I'm going to check out that dog book. I enjoyed "Marley and Me". I have a yellow lab, so I could relate to the chaotic four years of puppyhood. Kayla: you must be a great reader!! My son is enjoying the Conspiracy 365 series now. LindaJoy: since you mentioned children's books (and Green Eggs and Ham - which I also love)... ."Oh, the Places You'll Go" another Dr Seuss. I LOVE that book. I've given it as a gift to children at all different stages of their lives. It is such a fun book about life and is applicable to setting out in any new direction. I gave it to my nephew when he turned 16. It helped that the NFL had used it as the intro to the Superbowl that year and we are big football fans. After our nightly reading if my son wanted to stay up a little later, he would ask to read that book because he knew I would never refuse Books that I enjoyed that others insisted I read (even though I wouldn't normally pick these up) The Hunger Games The Shack Angels and Demons Also, The Power of Now -Eckhart Tolle

I feel like I'm waking out of coma or hibernation and I need to be awake for 45 mins- 1 hr before my body is ready to get out of bed. The only time I haven't felt like that since getting POTS was when I had IV saline. The next morning I was able to get right up - it felt amazing.

Hi Sue, I just wanted to respond as I have been doing some of the same things. I was actually just a few days ago talking about starting whey powder for protein too. I used to have it every once in a while just to give myself an extra boost, but I haven't done that for awhile. I wouldn't underestimate the effects of the biking 5X/day. That was an 'only' change I made for a month and it had really positive effects. I felt a definite reduction in brain fog, more energy (although still quite limited) and the first inkling that maybe recovery was possible. I have gotten out of my pattern recently for various reasons and sure enough, I feel awful again. My brain fog is back with a vengeance and I can clearly see that little bit of exercise was responsible for making me feel better. Flax seeds: I tried those for 3-4 weeks. Initially it was good, but after two weeks I had the worst menstrual cramps that I have EVER had in my life!! It was brutal. When I was reading your post, I immediately knew flax seed was the culprit when you mentioned your menstration, then I read your next sentence and realized you had already figured that out . After three weeks on the flax seeds, I started feeling really bloated (more than the usually salt/water bloated) and some nausea. I went back to research more about flax seeds and found info about the seeds containing cyanide. It is said that less than two tbsp/day is a safe amount, but after I stopped it, my nausea and bloating disappeared. So I know flax seed and me don't mix for whatever reason. It is so tough to figure it all out... I hope you get the right combination

I feel for you, Amber... It's absolutely ridiculous to me that they didn't do a supine measurement - do they understand what POTS is?!?!? I wonder if there is some detailed info on proper TT Testing that you could print off from the internet to show them. Sorry you had to go through all of that and still not have it confirmed.

Kat I feel for you! I absolutely hate the irregular rhythms (PVC, SVT, etc). The last time I had days of them in a row, I had called my internist for advice because I didn't want to go to the ER but I wasn't sure if it was safe to ignore it. Anyway, he didn't return my call (he said he knew he was going to see me in a few days anyway...not helpful...argh!). So, I decided I was just going to ride it out at home. It is very scary!...Things settled down for me after a few days of solid rest. I have never gone to the ER for the tachy, but aside from a few exceptions (like SVT or during sleep), I don't usually have it while sitting or laying down. It is more scary when you can't control it by changing position and of course becoming anxious about it just compounds the problem. I will usually try to distract myself for a little while (i.e play an ipod game or something pretty mindless) to see if things will settle down. It would seem that POTS is designed to rid us of our fears, because once we've lived through all of this we could probably handle anything! I think it is important for you to listen to your gut though. When I get that strong gut feeling I don't ignore it - there is no second guessing at that point - you just instinctively know what you need to do. Don't worry about anyone else judging you...if they felt what you felt they would be concerned too.

I also have this issue, but no EDS. I found a lump last year - only because it was close to the surface (otherwise I never would have been able to feel it). I had a mammogram and ultrasound when I first got sick with POTS and they were investigating everything. When the radiologist was doing my biopsy, he located the lump and said "I've got it", but when I looked at his positioning, I was suprised because he wasn't in the right spot. He found a second one, by mistake. This second lump hadn't turned up on either the ultrasound or mammogram. The one lump the did the biopsy on was determined to be a fibroadenoma (benign), but it is a little disconcerting that both of those investigative tests missed the lumps. I can't feel the second one either. My prolactin levels were elevated in my bloodwork as well...which everyone determined was unusual. (???)

I totally hear you about the toll all of this can take. All of that uncertainty is tough for everyone involved I hope you don't have to wait too long for a response. Keep us posted on how it goes. I just filed my disability claim today. { As a side note...I didn't proof read my earlier post so when I said "I've never been gone through this"...that was a typo I felt a bit like Kenneth from the tv show "30 Rock" - when I read it back }

My understanding is that the chest strap monitors are much more accurate. I have a Polar one - the most accurate I could find.{It was actually a gift for my husband for doing P90X workout, but then I got sick and confiscated it}. I would say that it is accurate for me over 90% of the time (sometimes the strap just needs to be adjusted). When I get many irregular beats or heart spasms the monitor can't read it at the time, but overall it is consistent with how I'm feeling and I have checked it against my bp monitor and it's been accurate every time.

Welcome to the group! It sounds like you have had quite a journey for a few years... You must have felt horrible with your bp dropping that much on the TTT! Re: salt intake. You'll probably have to play around with the amounts to find what works for you. I don't do the tabs, but I know lots of others do. I just put salt on my food when I eat. This wouldn't give me the high amount that docs recommend, but I find it works for me.

I've never been gone through this process (yet), so I'm sure others will be more helpful with that. It certainly sounds positive though based on the VE's comments! It sounds like you handled the exercise question very well! It highlights part of the problem with POTS which has to do with unpredictability and variability of symptoms. If there are some days/weeks you can't exercise then there will be some days or weeks that you can't work, and how can you realistically expect someone to hire you under those circumstances. I hope it goes well for you. How long do you have to wait for an answer?

I think this is a very individual thing. It may make some people more anxious, and others more in control. I find that my heartrate monitor has been very helpful for me to figure out patterns about how my body is reacting at various times. I definitely have symptoms with or without the tachy (or brady heart rate), but I know that if my heart rate is tachy it can be an indication that something else is going on (with pooling, bp, etc), so I can stop what I am doing or make modifications so that the other symptoms wont necessarily follow (chest pain, pre-syncope, extreme fatigue). If I didn't have the monitor, I wouldn't likely be aware of the tachy until it climbed so high that the shortness of breath kicked in and at that point the the rest of the symptoms are already underway. I am not obsessive about checking it at all, but I do monitor it when I'm on my recumbant bike, trying something new or feel horrible.

Right away, I think theatre... but wouldn't she make a great teacher!?

Oh, wow, that is soo cute She is amazing!!! I got a kick out of watching the kids behind her - how is it that they can sit there and not react to her ??? They must be speaking next and are dealing with stagefright ??? This little girl would be tough act to follow

Thanks for sharing your poem, Issie! I love what you have expressed here and I totally relate.

I think the driving thing is a super sensitive issue and we all have know ourselves really well to make that call. I haven't driven since POTS hit in Nov 11. For me my vision isn't the problem (although I have had double vision when really potsy and have floaters sometimes- as you mentioned Jen, out of the corner of my eye), as much as blood pooling is. When my feet are down while sitting (without the tachy to pull the blood back up) the pooling is bad, I get really lightheaded and my ability to process information is quite impaired. I don't feel like I would be able to process everything going on around me while driving and react quickly enough, plus I just feel awful. Sometimes I can't process everything going on around me in my own house. As much as I would love to be able to be out there, I wont do it - at least not at this stage. It means I have to rely on others alot, though, which is definitely tough. I was a Victim's Services volunteer, so I've been touched by the stories of many people whose lives changed in an instant because of preventable road crashes and my husband is a firefighter, so deals with people in crashes often. Soo much heartache that people go through... For me, a vehicle is just too powerful a machine for me to be willing to take chances with.

Alicia, Are you on any medications or taking any suppliments that could be affecting your levels? I know that a few types of meds can increase triglyceride levels - they include beta blockers, estrogen, etc. I don't know if my triglycerides were checked or not. I did have my B12 levels checked 5 months ago and my level was 780 (much higher than I expected it to be), but still well within normal range. My sister in law is a nutritionist and she was very suprised that my level was a few hundred points higher than hers (she eats meat and I'm vegetarian).I do take a multivitamin, but the amounts in those are generally considered pretty low. It is odd that your B12 level would go up (unless you were taking a suppliment). Your level would be expected to stay in normal ranges for a year or two after you stop getting it in your diet due to the liver storing so much of it. Were your LDL and HDL off this time as well?

That's the exact expression I get from my doctor It is hard to find that fine line of how much to tell people. You want them to be aware of what is going on because we really need support, but you don't want to complain. At the same time if you say too much they are overwhelmed. In my experience, the people that care will ask questions. I ended up sending an e-mail to my friends last week, after receiving some vents from them with the subject line "life". I acknowledged and supported what is going on with them and thought this was a perfect opening for me to share what has been going on with me in my life. I went on to express what the past several months have been like for me (not in medical terms, but in emotional ones - how it feels to lose your independence, struggle with daily tasks, live with uncertainty, etc, etc, etc). I thought that if there is a chance they can relate, it will be on that level...we all have emotions. Anyway, it's been six days since I sent it and the only thing I hear is crickets chirping...no response thus far. It's ok though, I know that it would have been hard to hear those things because truthfully I think they just wanted to ignore it. I feel better having sent it anyway. Bananas - I like your "does it make you feel tired or inspired" - I think it's a good motto to live by Issie - We all benefit from the fact that you so readily share your heart with others. I'm glad that you haven't let being hurt stop you from doing that. I was too emotional after reading your post yesterday to respond to it then. Thanks for your support and for sharing those quotes - very meaningful... Anoj - I'm sorry to hear that you are struggling with this right now. Here is a link to one of my favorite coping songs if anyone wants to listen... Thanks everyone...

This is exactly what has been working for me. {Thank you, Banana's, for advising me on this a few months ago }. I've been doing the short bursts for the past 5 weeks consistently. I started at 2 mins, 3X day and now I'm up to 4 mins, 5X day on the recumbant bike. I don't push my heart at all because it pushes back and I get very dizzy when I doing any kind of cardio. I did not expect to see any benefit from this limited amount of "exercise", my goal was to simply boost circulation. I have noticed some small but nice improvements (before this I had zero improvement in 6 mos) * more stamina (by that I mean that I don't have to lay my head down as much; I can do more without resting) * days that I'm not thirsty - I'm finding that some I need to choke down the extra water 2 1/2 liters was no problem before. * My big veins in my arms are starting to plump up again. I just had bloodwork and they had no problem getting blood. Previously those veins looked flat and blood would stop coming out. * brain fog seems to be improved * nightime crazy heart rhythms are less frequent. My heartrate and bp numbers are still the same, although my hr doesn't seem to jump up as quickly. The blood pooling is still really bad. I had tried all kinds of different routines, but so far this frequent/short bursts is the only one that I've been able to do. I agree that even a little bit can make a difference if it's all you can do

Thank you so much for your support and wisdom...you've given me some things to think about! I wish you hadn't all been through this, but I appreciate you sharing your experiences. I think part of the problem, as Issie touched on, is that 'I' do feel different - everything for me has changed and they have chosen not to come on that journey with me. They used to know me better than anyone, but that isn't the case anymore. One of them told me that "this is your cross to bear and one day we will sit back and laugh about it". I hope that is the case, but right now with all of the uncertainty every day, it sure feels pretty raw right now. I do laugh about it regularly with those in my life who are on the journey with me, but they go through all of it with me and it's a coping strategy. Isn't it at the very core of friendship that if your friend has a 'cross to bear' of any kind, the place for a friend is by their side? Whenever I would feel disappointed by their lack of support over the last several months, I would think "am I doing my part?". Like you said, Issie, I don't want any regrets. So I would initiate contact with them,asking them about various aspects of their lives and telling them that I'm feeling a little 'out of the loop' or that I'm having a harder time staying positive, etc. They vent about their daily struggles and I empathize with them. One of those 'vents' was about my friend being sick with the flu for three days and how her husband had to do all of the 'extras' around the house for those days and how awful that was. I empathized with her because this was obviously tough for her...but part of me thinks...seriously??? I've been housebound for 6 months and my husband has had to do everything. I am very aware that people deal with things that are much worse than I am dealing with - everything is relative. As many of you mentioned, I know that this is hard for them as well and one of them did say that she didn't know what to say to me when I was very sick and hospitalized. I've seen her avoid visiting people in the hospital, not going to funerals, etc because it isn't comfortable for her. I could never fully understand that because as strong as her need is to avoid it, mine is an intense need to be there. I have always respected her needs though. I guess I just hoped that she would be able to get past this in order to be there for her "best friend". I'm a 'lifer' when it comes to friendships, so I am really struggling with the fact that I feel this slipping away. Thanks for your support

Wondering if anyone has experience dealing with this... I have been very fortunate to have great friends, but there are two that I would have said were my absolute closest ones. Ten years ago, my husband changed jobs and we moved 5 hours away from these friends. So every year in the spring these friends have come to stay with me for a week-end (my husband and son go stay with relatives) so we can have a good visit together. We've enjoyed these week-ends so much that we have added a second one each year. We have the kind of relationship that we have lots of fun together, are honest (even if it's not what we want to hear...it is always what we need to hear) and very supportive of each other. Conversations, e-mails, etc routinely end with "love you's". So, when I got sick 6 months ago (the day after our week-end together), I received the expected outpouring of support...which lasted probably about 4 weeks. Since that time, I still get e-mails telling me about what is going on in their lives and ends with "hope all is well" and "love ya", rather than "how are you", "how did your doc appts go this week", etc etc. One of these friends thought she had melanoma a few months ago and wasn't getting support from her doc. I called her and advised her on how to handle the situation and told her to remember that she is worth every effort. She followed my advice and was seen by a specialist quickly and told she didn't have melanoma. Meanwhile, I had a breast biopsy the next week and they didn't even ask when I'd get the results, which is usually the first question from anyone. I'm really hurt and quite shocked by their lack of support because I know them to be such supportive and caring people. Those around me are very suprised by this as well. But, I have no idea how to handle this. They are asking now to get together again and even if I thought my body could handle it (which of course it can't), It just isn't the same for me now. I guess I just need to come to terms with the fact that it just isn't the friendship I thought it was. Has anyone been able to navigate through something like this?

They are beautiful flowers, Kim Thanks for sharing them. My tulips are coming up but they are not nearly as pretty as your hydrangeas. I'm hoping that my flowers will just 'appear' in my window boxes/planters this year...

Christy, I'm soo happy to hear that your son had a great couple of days and you were able to get out for dinner!! Sounds like he has been waaay overdue for some good days.

Issie, That's soo funny that your husband painted over it when you were gone - I guess he really hated it!! . I think I'd also encounter some resistance from my husband if I tried to paint our room purple...then again maybe the argument about healing properties would work in my favor. He'd probably agree to just about anything some days, if he thought it would help me get better... My neice (9 yrs old) also has a beautiful purple bedroom, too and she has recently been diagnosed with celiac, so maybe it will help with her healing. Corina, I love that you had a purple wheelchair, but definitely keep a big lock on that shed!!