AllAboutPeace

I also watched that Rowe video that (POTLUCK mentioned already) and it was interesting to hear about how elevating the bed helps with blood volume/retaining fluid (not peeing at night). I do have the head of my bed elevated and I never get up to go to the bathroom through the night and I still don't get up to the bathroom until I've been awake for an hour in the morning. I never understood how I didn't need to go to the bathroom after drinking 2 1/2 -3 litres of water & gatorade each day.

Jen, I can soo relate to the feelings you are talking about. I definitely feel that guilt (big time!!) as well, so I also feel badly asking him to stop. Sometimes I do, but most of the time I just isolate myself for a little while until he's ready to move on to another activity. He's my only child too (so I have also have only-child-guilt when there aren't others around for him to play with) and I feel useless to him right now. Our favorite things to do were play football together, bike together, walk together, go for drives, etc. Our activities have changed to cards, board games and puzzles when I feel up to it. I am very thankful for the fact that I can even do those things, but I'm still mourning the loss of caretaking for him. It's all part of processing it, right??? Every once in a while I try to do things for him to feel normal (like make supper), but then I end up with huge setbacks and more symptoms.

CM and linj - your posts made me realize two things... 1. I would love for my body to be able to handle a coffee right now and 2. I've been watching the wrong movies... My husband picks out all of the movies and he never picks Hugh Jackman with no shirt... I do get shaky hands sometimes. A friend came for a visit one day and I noticed that my hand was shaking as I was setting a plate down beside her. I got really self conscious about it because that was the first time I noticed it. My son pointed it out to me just two days ago - again I was carrying a plate in my hand. I didn't even notice it. I do have alot of trouble with bearing any weight on my arms especially if I don't tuck it in close to my body. Katy, I think that mine may be related to fatigue as well.

MomtoG: that's interesting about the coconut water! I'm going to look into that - thanks! What type of store would you buy it in? health food store? grocery store? When I was in hospital for my initial episode at the onset of POTS, I was found to have low potassium. I hadn't been on any meds at the time and hadn't been ill, so they couldn't figure out a reason for it to be so low. So, I'm always careful to make sure I'm getting at least some.

I'm glad you asked this question because I have also wondered about this. I have read good arguments for each side on this issue. When I first got sick, I had some bad experiences with being flat so I just figured out that I did better with raising my head. That was prior to a POTS diagnosis, so I hadn't read anything about it at that time. Hypovolemia was a big issue for me then (to the point where blood didn't come out when I was cut or would stop coming out when they tried to take blood), so common sense would seem to tell you to not elevate the head of your bed because it will reduce the amount of blood to your brain while you are sleeping- for some reason I was worse when flat though (???). I do still have night time heart issues with being raised up, but I don't have headaches or other symptoms (at night). Seems like maybe it's an individual thing...

Over-stim is definitely as issue for me as well. My son is a sporty guy so he is constantly throwing a ball into the air, bouncing soft balls off the wall, dunking in his indoor basketball hoop - none of this has ever bothered me before, but since POTS it is very challenging to handle. (I get very nauseaus, have adrenaline surges, headache, etc) I will often have to go to a quiet room just to get away from it. On the not-so-bad days, I try to work through it without leaving the room in an effort to help my body adapt to the stimulation. Some other things that have been triggers for my adrenaline surges are: my husband often will bounce his leg while he is sitting; the heavy bass sound in music; yesterday I watched a movie that had a 'heartbeat' sound when the character in the movie was dehydrated & tachy (thankfully I was watching at home and could control the volume...I never would have been able to endure that in a movie theatre!!). It's amazing to me that this is a totally physiological response without any precipating anxious thought. Bunny, that's great that you are still able to function with all of that stimulation! I was always able to thrive in chaos as well (before POTS). I had a previous job for 10 years working with teens in crisis centres/group homes and I loved it. There was constant chaos, but I was known for my "calming presence" and ability to filter out and handle what ever crisis came up. I hope that ability isn't gone forever...

Forevertired, I had to go the ER (infection from biopsy, crazy nighttime rythym issues and high tachy ) last week because both my docs were on vacation. I brought a copy of the following article with me and flipped to the page about benefits of IV saline for POTS patients. The ER doc wasn't familiar with POTS and immediately agreed to it. I also mentioned the point about it being used for 'acute heart rate control'. I think he was happy to be able to do something for me. I plan to share this with my internist as well when I see him. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/pdf/ipej060084-00.pdf

I've been a little concerned about drinking the sucralose in my Gatorade (G2) as well. I have always avoided any of those artificial sweeteners, so drinking it everyday is a little unsettling to me. Until I find a better alternative though, I guess I'll keep drinking it. I've been switching back and forth between regular Gatorade and G2 (tons of sugar vs sucralose) for now. I had searched some previous posts on the forum about it and noticed that some people come up with their own electrolyte drinks which may be a good alternative. I did try pedialyte as well, but I found it really hard to drink the amount I needed to consume. A healthy option would be great...

Julie, I haven't had dental work done (I actually put my dentist on hold for a little while). I have had a local anaesthetic for a biopsy though and I got along fine with that. I had asked prior to receiving it and they assured me there was no adrenaline. (I'm not confident that she knew that for sure though ) Here is a link to an article re: dental considerations for POTS patients. I plan to give it to my dentist before my next appt. http://www.dynakids.org/Documents/Brooks_April_2006_JADA.pdf

A shot of whiskey!!! Wow! I'm not brave enough to try anything at this point. I really wanted to have a Lime beer with my brother when he was here on St. Patrick's Day, but fear took over. My POTS story began after I had two drinks in a restaurant with co-workers while I was away on a conference. I had two syncope episodes and the paramedics administered a bag of IV and oxygen before they even transported me out of the restaurant. Apparently I missed alot of drama (coworkers freaking out/crying) when I was unconscious. It all must have been wonderful entertainment for people trying to eat their dinner...

It's interesting to look at how our emotions are impacting us. Like all of you have mentioned, things work out best for me right now when I maintain an even level of emotion. The highs and lows do tend to cause problems for me as well. Last night, my son was doing his nightly reading for school and he wanted to read me a story from "Chicken Soup for the Pet Lovers' Soul". He always loved reading these stories with me because he would get a big kick out of me saying that I was determined not to cry. Of course, no matter how hard I tried not to, a few tears were inevitable. We haven't read this together since I've gotten POTS. Anyway, at the point in the story that I would normally have tears, I felt the emotion, but instead of tears it came out as an 'ache' in my chest (not like my usual chest pain, but just literally a 'heartache'). Sounds crazy, I know... It's a very vulnerable feeling and pre-POTS I had always felt that I could handle anything (and was characterized this way by others). I'd be curious to know if that super sensitivity is something that goes away when people go into remission or recover from POTS.

Christy, In my experience, the effects are pretty quick. I think it depends on how low you are to start with though. The first time I had it I felt better right away. I literally went from being laid out on the floor so weak that I was barely able to talk and unable to move even my arms, to being able to walk around and function (after 1 1/2 bags of saline). Last week when I had it, it wasn't that drastic a change for me but it still helped. The biggest thing I noticed this time was that I had a quieter sleep (didn't wake with extreme tachy) and when I woke up, I was able to get out of bed within 5 minutes! It usually takes me at least an hour before I can get out of bed (feels like my body is waking out of hibernation). Everyone in my house was literally shocked to see me up and around. I hope the saline helps to give your son a boost to handle the journey and all goes well with the new doctor.

I have definitely experienced the same thing! My husband videotaped a few of my son's basketball games for me and I was trying really hard to watch it with my son at my side, but all of the panning around made me dizzy and nauseous. It has also happened recently when kids were around and one of them started spinning in circles. My body was reacting as if I was the one doing the spinning. ...not sure why that happens...

Welcome to the group, Alaska! I'm not sure how I would have reacted to a dr telling me to go home and 'not think about it'...that's brutal !! I'm glad to hear that you dumped him and have moved on to someone better. I went for my first post-POTS haircut a few weeks ago. I'm not at a point where I can actually participate in life outside my house, so it was a big deal. I needed a cut badly (just to make day to day care easier), so I washed my hair at home and went in with a wet head in a ballcap. I went to a quick cut place, so it wouldn't take long and I decided not to tell the hairdresser that I have any issues - I just wanted to pretend to be normal for a brief period of time. My mother had driven me there and stayed in case anything came up. I took my shoes off and folded my legs up on the chair with me (I never would have been able to get through it with blood pooling in my feet). As soon as she put the comb through my hair, I knew it wasn't good - I hadn't anticipated the strain it would put on my neck to hold my head upright and still. Thankfully, she wasn't a talker because I just needed all of my mental focus just to get through it. When she finished I just put the ballcap back on and left with a wet head (the same way I went in). So, I was completely exhausted and flat out on the couch for the next day or so. My husband called from work to see if I had actually gotten the haircut, thinking (or at least hoping) that I would feel rejuvinated and refreshed...not quite what I was feeling...

Wow, that's great! So, it sounds like she is bringing great awareness to POTS . As a side note though, she still has POTS after 6 marathons!!! ...I guess that blows the 'exercise as a cure' concept.

Jen, I'm sorry that you are going through all of this right now. I gather, from your other posts, that you are indeed an over-achiever and it is definitely tough to let go.(I can relate) Your health is the most important thing right now and jobs will come and go - especially since you already have other aspirations. I know exactly what you mean about the 'reality' just hitting you all of a sudden. I had the same feeling when I had to hand over all of my cases at work to someone else - I knew it had to happen, but as soon as the phone call ended, the tears started flowing. I've been off work since the first of November and my employer, like yours, has been really supportive and compassionate. He checks in with me every once in awhile to see how I'm doing, but my 'final' phone call will be coming in two weeks. I'm dreading it...and the uncertain future... I don't even really talk much with people from work anymore because they all just want me to get better and I have nothing to tell them. ((Take care))

Thanks for this post, Rama. It's soo helpful to hear the details of what has worked for others. Exercise has been a complete disaster for me so far (extreme fatigue/dizziness; my hr has been skyrocketing at night; have had tachy and brady through the day). I can't seem to push my heart at all right now, so I'm back to what amounts to essentially moving my legs on the bike for circulation I'm just coming off of a boost from IV saline...so I was capable of a little bit more today. I'll look forward to hearing more replies...

Issie - sounds like you did some quick research!! Do you happen to know if any of the topics are decided on yet?

Ya, what am I saying...we should be fundraising to send some of the highly knowledgeable members of this group, right?!! Trip to Paradise anyone??? I know I would be no good to attend because at least half of the information would go completely over my head (plus it would require me leaving the house. lol). I agree, Issie, that it's good to know that they are talking about POTS and after their trip to Paradise they should be refreshed and ready to take it on...(ok, that's hopeful).

Now there's a conference that would hold my interest! This year's conference is in Paradise Island, Bahamas - they definitely know how to pick the locations! I should fundraise to send my doctor...I'm sure he wouldn't mind

Jen, I'm with others on this one. If it were me, I'd be doing both. You have nothing to lose by adding your techniques (deep breathing, meditation, etc) on top of what the docs suggest. I'm doing those same things right now (meditation; Bowen therapy; total relaxation). I've been getting alot out of Quantum Healing by Deepak Chopra as well - if you are a reader and you are alreading thinking along those lines, you may also get something out of it. Take care...

Forevertired, I'm glad you were able to locate some neurologists that deal with ANS disorders. It sounds like you have had a lot of good testing done, so hopefully you will get someone who is willing to take this on with you. Thats horrible that the cardiologist was soo dismissive like that. POTS is soo much more than a heart rate fluctuation... I hope you are able to get a referral soon.

I don't actually know what they do to determine that (sorry) - maybe someone else can answer that question... I know that my internist spoke with the electrophysiologist who said that she wants to rule out IST (probably based on my nighttime tachy), but he didn't say how she will do it. I'm curious now too.

I agree that it would be a good idea for you to be tested for IST. I am waiting to see an electrophysiologist so they can rule that out for me as well (although I'm sure mine is not IST). My hr isn't tachy when I lay down though, which is quite different from yours. Mine just goes tachy through the night and I was told it was likely the same cause that Julie mentioned - already low blood pressure dropping further during sleep. I hope you find a doc who is helpful! I have none that know anything about POTS either and truthfully, at times I just want someone to look at me with an "I-totally-get-it" expression as opposed to the "blank stare"; the "you're feeling what??"; or the "maybe-you-should-join-the-traveling-circus" (perhaps start a 'guess her blood pressure' act or 'watch the incoherent lady's feet turn purple').

I haven't had a sleep study done, but my holter and telemetry when I was in the hospital both showed that I was tachy when I'm sleeping. Sometimes I (or my husband) have woken up to find the bed vibrating and then discover that it's actually me that's causing it. At those times my tachy has been quite high. Have you ever woken with it or noticed it being tachy?