AllAboutPeace

Issie, I'm sending my husband out for purple paint...I think every room in the house needs a makeover It's always been my favorite color too.

Rich, Just curious, were you able to prove this to your doctor? My sitting symptoms are bad, but for me it's all attributed to blood pooling in my legs. If my legs are down they turn purple (toes almost black) and I lose soo much brain function it's ridiculous, then the rest of the symptoms will follow. Because of this, I now keep my feet up and I'm able to have a coherent conversation and feel comfortable. Maybe it's a bad thing to always have my legs up ?? I do wonder if it contributes more to muscle atrophy. I try to move around as much as possible and exercise my legs on the recumbant bike to keep the blood flowing...just in case.

I can soo relate to that statement - 100%. I don't know if it's wishful thinking, denial or what ??, but I do the exact same thing!! I could have several days with horrible symptoms and if I'm having a better day on the day I go to the doctor, it completely skews how I'm presenting it to him (because I'm just thankful the horrible days are gone and I'm ready to move on...the problem is the horrible days come back). My husband has commented on this and says he understands it but he gets frustrated that I'm really not presenting a 'true' picture of how debilitating this is.

I just experienced this yesterday for the first time. {isn't it exciting when we discover nasty new symptoms ???} I've been feeling a tightening in my throat which is expecially noticeable when I'm flat on my back. I'm rarely ever in that position, but a few months ago for a nuclear medicine scan, I had to lay flat for 20 minutes and that was when I first really noticed it. I have woken at night a few times with what feels like sleep apnea, coincidentally, I have been on my back at those times as well. Anyway, I have started to feel this tightening at times when sitting. Yesterday, I tried to swallow (just saliva) and I couldn't. Everything in my throat seemed to 'lock up' (or block up) and it momentarily felt like I couldn't breathe either. I ended up forcing myself to cough, felt the release and was able to swallow again. I assumed it was a POTS related thing and was happy to have found this thread about it.

Emma, I am so sorry that you have had to deal with this awful chest pain for this long No matter how much the docs say it's fine, it never feels fine and I can't help but wonder how their demeaner would change if they actually felt what we try to describe to them. At one of my appts, I told my doc that my heart felt 'weak' one day.{this was the morning after SVT's and waking with crazy tachy} He promptly corrected me, saying "you mean you felt weak, you can't feel your heart". I might have just let that go on another day, but I couldn't, so I told him "Maybe you can't understand that because you've personally never experienced it, but I can assure you, I can feel my heart". The day that it felt weak, my heart rate went to 40 after climbing a flight of stairs which would normally send it very high. It makes sense too, doesn't it? Like any other muscle in the body, if it is overworked it feels weak afterward. I do find that my heart is more sensitive depending on where I am in my menstrual cycle, so I know, for me at least there is some hormonal connection. Are there any options at all for you to find a doctor who is willing to work through this with you?

Tracy, Welcome to the group! Are you able to work in the mornings?? I know how tough it is for me to get my body going in the morning and my BP's aren't usually as low as that upon waking. As for salt intake, I just put a generous amount of salt on all of my meals throughout the day. I don't know the exact measurements, so maybe someone else will be able to give you that info. I will also add in extra salt snacks if my blood pressure is dipping. I'm not sure I could ever consume the huge amounts that some docs recommend. Many of us do replenish electrolytes with electrolyte beverages (gatorade, pedialyte, coconut water, homemade solutions), to make up for the loss through consuming so much water. Getting the right balance of salt and water seems very individual. I know I need at least 2 1/2 litres of water/day. I had to play around with the amounts and kept a journal to find out what worked best. I hope you'll be able to find what works for you.

Emma, I have gotten these too, usually from lifting (trying to make supper, lifting pots, etc.). I also feel very fatigued, sob and overall potsy which carries over at least for a day. I can't remember specifically about the chest pain, I just know that I end up in bed or on the couch and I feel horrible. I'm not sure if that is because of the SVT's or because I've simply done too much and am paying the consequences. I find these, and some of the other crazy rhythms unsettling because you can't control it. No matter how high our regular tachy goes, we know we can sit or lay down to bring our heart rate down - but these don't follow the same rules. My understanding of it, though, is that it is not dangerous unless it continues for hours. Mine seems to follow the same time frames you mentioned. My doc has ordered a 14 day monitor for me to wear (I've been waiting weeks for it already) to investigate a little further. {I was also waking with my heart in a spasm, so they wanted to investigate all of it}. It sounds like you don't have a great doc situation. Have they done a longer term monitor for you? Have you been having these from the beginning of POTS or is this something different for you?

Welcome to the group, CarrieJessica! Sorry to hear that you and your daughter have a need to be here, but I know you will find lots of valuable information, encouragement and support.

Oh, that's crazy - blaming your age at 33! I thought you were going to say it was a PCP...unbelievable from an autonomic neuro!! It's the worst when the appt starts out with the doc running late and rushed. It's soo unproductive.

Dana, I have failed miserably with exercising, so I totally hear you on that one! I would end up on the floor unable to lift my head up for at least an hour after 15 mins on a recumbant bike (that was after building up to that and going at an easy pace). I was trying to push my heart by attempting to reach the target rates (while in a recumbant position). Anyway, what I learned - probably the hard way- is that my body is definitely not ready for that and *eventually* I listened to what my body was trying to tell me (instead of what my stubborn brain wanted to work). So, I changed my strategy completely. I started doing shorter sessions, more often on the bike (2 mins) keeping my heart rate as low as possible At first that meant pedaling very slowly. My goal was just to help with circulation without stressing my heart. I started noticing that after those short sessions, my heart rate would be less reactive (not jumping as high as quickly), so I started doing that 5x/day so that levelling effect would carry through. I had absolutely no setback issues with this and it really seemed to help settle down my heart. I had been having nasty rhythm issues prior to that. I very slowly worked my way to four mins/5x day now. It doesn't sound like much but it has helped to increase my overall energy level and lightheadedness. When you were mentioning your high heart rates with standing, I was wondered if this type of strategy might have a similar settling effect for you. I hope you find something that helps.

Monstrosity, My only experience with a neurologist... There is one neuro, who is very close to retirement, in my area and he showed up in my hospital room at the end of his workday. I was hospitalized while they tried to figure out what was going on with me (prior to POTS diagnosis). I was having tests everyday and barely had the energy to exist. He said "two docs have asked me to see you, so why am I here?". He literally knew nothing and wanted a quick description of what was happening so he could go home. (how would we ever sum up our symptoms like that???). Anyway, he gave me a quick "neurological exam" that I suspect dates back to caveman days and declared that he is confident I am not having any neurological issues at all. That was just after I had gotten my results from a CT scan that showed a suspicious spot on my brain (in an area the docs said would normally show up if someone had a stroke). He had no idea that I even had a CT scan until I told him... I knew he wasn't going to be the guy to help me, so all I had the energy to do was say "thanks" and pretended to be reassured by his findings... My internist diagnosed me with POTS a few days later, but no one has ever suggested that I go back to the neuro.

Welcome Gloria, I'm sorry to hear that you have been dealing with this for many years. Glad to hear that you are ready to join in so we can all learn from each other. I imagine that time on the computer is at a premium in your busy house

Just wanted to say 'hi' and welcome to the group! I was diagnosed with hypothyroidism the same time I was diagnosed with POTS, so my doc put me on a low dose Synthroid for that. I was a complete mess physically at the time, so I didn't notice any change with that med. I did have some hairloss with it, but I think that is starting to settle down. I'm sure others will be able to help you out with your questions re: Flourinef. Sorry to hear that the Armour is adding to your symptoms - I hope it levels out for you.

This one is a very informative one (from Dr. Raj at Vanderbilt) and would be great for someone who is open to learning. For me, finding a doc like that is still in the 'dream' phase I'm glad you found one! http://www.ipej.org/0602/raj.htm

I had this as well after the onset of POTS. Prior to that driving was one of my favorite things to do, so it was an exteme change when I couldn't even go on a short drive without feeling absolutely horrible. The nausea was horrible. I had the same effect from a wheelchair at the time, so it was any motion at all. I'm not sure which thing helped me the most, but maybe the combination of salt loading / drinking lots of water; and keeping my feet up while I'm in the car. I actually enjoy drives again. I am usually in the backseat with my legs spread across the seat or if I'm in the front, I have my feet tucked up on the seat with me. I don't know if your daughter has an issue with blood pooling in her feet/legs, but if she doesn't already keep her feet up when in the car it might be something easy to try. Blood pooling is a big issue for me and I have less symptoms overall if I keep my feet elevated.

This is exactly what I needed to hear today...thank you!! I'm so happy that you have your life back

Thank you everyone for your responses! I had no idea how controversial lyme disease was until I saw my doc's reaction to what I thought was a request for a simple blood test. Apparently, many docs in Canada wont even touch it, and patients are forced to seek treatment in the US. MomtoGiuliana, Thank you so much for that information! I wasn't able to find any timelines at all for the symptoms/stages, so I really appreciate you passing on the knowledge you have about it. Looking at the list of symptoms alone isn't very helpful because there is such a big overlap with POTS. My 'gut' tells me I don't have it, but I've been getting quite a bit of pressure from family, friends to get tested to rule it out (even though I have explained the potential for inaccuracy of results).

Kim, Do you think it's possible the tick bite could have something to do with your new symptoms (uneven pupils; crawling feeling on your head)?

I agree, it's good to leave before a big crash happens. I also ignored my bodies messages with regards to work and I crashed - hospitalized and have been housebound ever since. Now that I'm out of it, I realize fully what a toll it was taking on me (good job helping others, but wrong one for someone with my dedication level). I cared too much and took on too much. I totally understand the feelings of guilt and the difficulty in saying no. I never said no when asked for help or to take on a new project and I am really paying the price for that right now, meanwhile my coworkers are out there enjoying their lives. Do whatever you feel is right for you. It sounds like you have a good set up with your STD with 100% pay. Take care of yourself first!

Definitely!...After a long winter, we had a few weeks of sunshine so I was sitting outside all the time. It coincided with my best two weeks since last October. I was also able to do consistent, although minimal exercise as well, so I'm not sure which one, or both contributed to my feeling a little better. Sunshine definitely has healing qualities for me.

Naomi, That's great - both the fact that she is responsive to you and that she has a plan!! You'll have to let us know how it works for you and if you do notice any improvement from the lesser amounts. My PCP/family doc gave me his e-mail address a few months ago and the one time I e-mailed, he responded within a few hours. My internist handles all of my POTS related issues, but I still love the fact that I can contact my family doc if I need to. In a perfect world I think we should all have that kind of support, specifically when our bodies suddenly start behaving in a scary, erratic way.

Naomi, Here is the link for that article. It is long, but you could skip to the part about non-pharmalogical treatments. http://www.ipej.org/0602/raj.htm He lists it as being helpful for blood volume expansion and acute heart rate control. I definitely did find the saline helpful, but I have not had it on a regular basis. I hope that it helps you..

I also received 1L over 1 hour. Dr Raj recommends 1L over 1-3 hours in his article that I printed out. Seems like 1/2 or 1/4 bag wouldn't be very much.

Linj10, There was another thread recently that discussed 'writing issues' and how our handwriting has worsened for some of us. My handwriting has been horrible since developing POTS. I was concerned about it at first, but I had a day recently when I wrote quite a bit and my writing was normal (it was day without brainfog as well - so maybe there is a connection). It sounds like you have alot going on, so you may be feeling more 'posty' because of that. I know stress can have that effect on me.

Wow, that's really interesting, Firewatcher... Thanks for posting that! Something to think about, when many of us talk about the "go, go, go" lifestyles we had before getting sick. I know that I, personally, had not given my body time to rest/recoup, instead I added more exercise.