AllAboutPeace

Yes, definitely! I am constantly layering up to keep warm so the deep cold doesn't sink in. I have avoided going outside in the cold because I know my body can't handle it no matter how many layers I have on and I will end up with nasty whole body shakes.

I'm trying to figure out whether this is something I should pursue or not... About 8 weeks before I had my sudden onset of POTS, I was on a wooded walking trail when I was on vacation. There have been no known cases of ticks infected with lyme in the immediate area I was in; however, there are known cases of it within an hour all around this area. The known cases have been spreading rapidly within this region as well. I didn't notice a tick on me, nor did I have the trademark bull's-eye rash. When I researched it, the experts seem to say that less than 50% (some say 30%) of people infected with lyme, are ever even aware that they had a tick on them or saw a rash. I also read that the test for lyme is notoriously inaccurate - showing false positives as well as false negatives. The symptoms for lyme overlap heavily with POTS. This link shows symptoms and states that anyone who has 20 of these symptoms should be investigated for lyme. http://www.canlyme.com/. When I mentioned this to my internist he told me that they just don't test people randomly for lyme. He also mentioned that the results are not accurrate and therefore he wouldn't do it. I agree that it's unlikely...but I had no precipitating event for POTS at all. I have had no previous health issues, no virus, no trauma or accident, etc. Any info or experience with this??? The postural changes are definitely POTS and not lyme, but can lyme cause POTS or does the overlap of symptoms just cause confusion between the two?

I took Keflex last month. I did feel a little better when on it, but in my circumstance I attributed that to the fact that I received IV saline (with the first dose), plus I was taking it for an infection (so I was likely feeling the benefits of that clearing up). Prior to taking it, my heart had been in a really reactive flare, so the combination of IV/med did settle down the crazy tachy and irregular rythyms, but it just settled back into my 'usual' tachy. I had no change in blood pressure. I'd be curious to see the effects without IV or infection.

I also had Ativan at night while hospitalized. I took it a few nights, but it didn't seem to agree with me, so I stopped it. I had lots of core trembling about 1/2 hour after taking it and it didn't help me sleep. One night I didn't sleep at all. The nurses expected me to be sleeping soundly and were quite shocked to see me still awake. I did read that it is known to have an amnesia effect.

I'm rooting for you!! Keep us posted.

Kim, Thanks for the tip about flax seed. For some reason, I missed the fact that there was a plant based Omega 3. I had tried fish oil but I really can't handle that taste. I'm going to see if someone can pick some up some flax for me. I know that I've been missing this in my diet.

Thanks for posting this, Issie! I've been thinking about trying to get some Omega 3 and that article lists alot of good reasons to do so. Bring on the serotonin... {I think the sunshine/vit D is already helping with that, too}

Has anyone taken antiarrythmia meds for these? I've avoided beta blockers because my resting heart rate is sometimes mid-low 50's and I've had a dip to 40 (awake & upright) when I've been symptomatic. I know it goes into the 40's when I sleep. Does this get better over time? Right now my functional ability is pretty low and the main reason I don't push myself is because I get this over-reaction from my heart. It sets me back for days. I'd love to be able to make supper without a major setback. Is there anything else that seems to help? I'm curious about the vitamins. I do take a multi-vitamin, so I wonder if I would benefit from extra.

Rubytuesday, Thanks for adding that great information! I'm in Canada, so the whole medical set up is different. My original plan was, as you mentioned, to bring the article to my internist with hopes that he would write an order, but as it turned out both he, and my PCP were on vacation that week. I agree that is the best way to go...if your doc will do it.

I hate having all of these irregular rythyms. In the articles I've read, they say that POTS patients should only have sinus tachycardia, but this has definitely not been my experience (nor the experience of many of you, obviously). I was diagnosed with mitral regurgitation (mild), but that showed up at exactly the same time my POTS symptoms showed up, so I feel like it's related to POTS. Within days of my sudden onset of POTS, my doc could hear a new pronounced murmur. My doc just ordered a 14 day monitor for me too to find out exactly what they are. He's questioning A-Fib; V-tach (???). The skipped beats have shown up before on tests and I can feel them - it's only when they happen in bunches now, that I get concerned. I haven't seen a cardiologist yet, so I'm looking forward to that consult. I wonder why some of us have this issue? It seems like the heart is a weak spot for me; for others it seems to be breathing issues or gastrointestinal issues, etc. Do any of you have issue with lifting things? That seems to trigger more heart issues for me.

Here is the one I used http://www.ipej.org/0602/raj.htm It is a very thorough document. I just showed the er doc the page with "non-pharmacological treatments". He seemed to want to do something to help me out, but wanted me to see my internist for any actual decisions about meds, etc.(I was having very wide swings in hr from brady to very tachy) Saline was the perfect short term solution (the article states it is effective in increasing blood volume and acute heart rate control). He agreed to the IV then later confirmed that I had an infection, so was able to put the antibiotics in there too. I didn't know what kind of response I was going to get, but truthfully, I didn't care. When he had his initial consult with me, he appeared slightly overwhelmed with my situation, so that's when I said "oh, I did bring some information from one of the major centers that specialize in POTS...". The document made all the difference. Best case scenario is that you will never need it, but if you do, I hope you get someone who was equally as responsive as the doc I had.

That's too funny! I'm sure people think that all the time since no one knows about POTS.

Trying to exercise has been a real struggle for me, so I've had to accept the fact that I can't just push myself through it. I'm already housebound, but trying to push my body results in a nasty response from my heart (brady, skipping beats, SVT, more reactive tachy, etc) and overall feeling horrible. I would also get really dizzy from biking if I pushed my heart at all - I would end up on the floor or couch for at least an hour unable to lift my head. What is working for me now is doing a little bit, more often.. {thanks to some tips from others on this forum } I can get on my recumbant bike and do very 'relaxed' biking for 3 minutes being careful to keep my heart rate low (80's). Obviously, I'm not getting a workout with this activity, but the increase in circulation (or maybe a chemical release ???) really seems to be making a difference. I've found that it helps to stabilize my heart rate for a period of time after and that helps when my heart rate is high and really reactive. It also helps with the brain fog. I've built up to doing that 5 times/day, so that stabilizing effect carries through. Of course, feeling more stable makes me feel like I can push it...so I tried to go to 3 1/2 minutes yesterday...but my body is clearly telling me was too much of a leap. It definitely seems like we each have our own formula of what works.

Elfie, Sorry to hear about the problems you've been having - we all know relationships can be very tough. I think you need to listen to that little voice that's talking to you. It sounds like you have alot of doubt about where this relationship currently stands. You are absolutely right that you deserve to be treated with respect and consideration. I'm glad that you were able to express that to him. He needs to be meeting you at least halfway (I have a tendancy to say he should be going further than halfway because you are dealing with POTS, but let us say at least halfway...). So, if you are making the effort to make the drive to his place, then he should take care of supper, for example and not have a list of expectations for you once you get there. You may feel that you are harping on the issue (or he may make you feel this way), but it is so much easier to work on this at the beginning of a relationship than it is to fix it later on. Some otherwise very nice guys (or girls) will fall into the trap of being 'takers' if they are able to get away with it. Know that you deserve more than that. I was impressed to see the positive attributes that you listed about yourself. It sounds like you have a lot to offer in a relationship. I think its good to be able to step back and look at things objectively if you can. What advice would you give a friend in the same situation? In my experience, it all comes down to communication. If you can be as clear as you can with him about what you need from him (or if you are not at the 'partner' stage yet, you could let him know what you would expect from someone in a long term relationship), that way he will know for sure. Also, in my experience and those of others, it is best to be specific about what you need. He may have an entirely different interpretation of things than you do. So, since you mentioned that you like to go out,..he may think once every six months is good, but you may want more often than that. If he is the right guy, he will listen to your concerns. I hope everything works out for you.

I've been spending as much time sitting in the sun as I can (several days this week). I'm in Canada and it's just starting to get warm enough to be out without lots of layers on. It may be coincidental as well, but this week is the first time in 5 months that I actually am entertaining thoughts that recovery might be possible (after a really looong rehab period). My brain fog is much better and my energy level is improving. I've been able to go from 2 - 4 minutes/day on the recumbant bike a few weeks ago to 3 mins@ 5 times/day...baby steps... The sun exposure is definitely a good mood enhancer if nothing else. I'm with you on your view of minimal skin cancer risk (when weighed against feeling better) especially for a 10 min span of time. I haven't had my vit D levels checked. The docs here say that they don't even bother checking it because they assume everyone is low.

Issie, I get that "cold to the bone" as well and if I don't catch it, it can lead to fully body shakes/tremor. I always have layers of clothing on and blankets nearby to keep it from really sinking in. It definitely does seem to be worse if I'm tired. I've always had a tendancy towards this (feeling cold) anyway, but it definitely is more extreme now. Starting Synthroid (for thyroid issues) didn't warm me up any. Prior to POTS I would be cold going to bed, but wake up overheated...now I don't heat up at all and I don't seem to sweat {maybe that has to do with very limited exertion, too}. Hmmm...never thought to actually check my body temperature...I'm curious now.

Ok, that is insane!!! I have my first TTT in June and I'm not even sure I want to have it for fear that a crazy 'potsy' fluctuation will happen that day. I've had poor man tilts and they all show POTS, plus I've been completely not functioning outside of my house in over 5 months (even in the house functioning is limited). I can just imagine what kind of support I'd get from my docs if the tilt is inconclusive... A single TTT should not be a diagnostic for such a variable illness (especially if not done properly!!) That's crazy, Sue...

Puppylove, I'm so sorry to hear that your night went the way it did It's soo hard to know when to push and when not to. On another day you might have pushed yourself and been fine. Your family knows that you tried even though you weren't feeling well, so no one should be mad at you for that. I have pushed myself at times because I wanted to try to be remotely normal for my husband and son, but I have ended up being miserable.

Alaska, It sounds like you have a well thought out plan! I currently don't take any meds, either (partly because I'm too chicken to try them) and am trying to do all of those healthy things you mentioned. I've been curious about trying the gluten free diet, but haven't made the leap yet. I've recently had some relatives test positive for celiac. I hope you have lots of success with your new plan and a minimal amount of 'yak-ing' from your green smoothies! Sounds like you are already doing really well with the 30-40 minutes of yoga/run. I may be overly cautious, but do you think maybe it would be better to see how your body reacts to coming off the med before you add a morning run (especially since you mentioned that you really had to push yourself hard to do it)? We are all different so your body may adapt to that with no problem at all, I'm just thinking in terms of not wanting to set yourself back by doing too much at once. Keep up that positive energy and keep us posted on how things are working out for you.

Dizzy, Yes I have the same issues. Before POTS, the nurses at the blood donor clinic loved me because I had these big, full veins for them to access. Now it's the total opposite. I have had the blood stop coming out a few times during blood draws. I also have cut above my ankle while shaving my legs (which would always result in blood running down my foot), but after POTS it didn't bleed at all. The water/salt has helped a little, but it is still very slow to get any blood out. Having said that though, when I had a breast biospsy last month, the radiologist (who performed the procedure) hit a blood vessel in the process and the blood came streaming out that day!! Argh...

ACsMom, My heart goes out to you and your daughter (and everyone out there dealing with POTS). My son is doing well (healthwise) now, but I know what it is like to have a very sick child and what a struggle it is. In response to your question about being unresponsive when symptomatic... I very often will not feel up to giving a response or the energy for a response when someone asks me how I am - it's not that I don't want to respond, but it's soo difficult to try to explain how you feel (even if you can verballize it) and you know it will take a huge amount of effort to get it across. My husband used to get frustrated with this because he wanted specifics and all I would say is "I feel terrible". You do also getting tired of saying how awful you feel. One day my husband asked me how I was feeling and I said "oh, fine". He then said "are you just saying 'fine' because you don't have the energy to tell me how you really feel". {Breakthrough } You could maybe try using the Scale of 1-10 to describe how she is feeling overall. This requires much less effort on her part, but also can give the overall picture of how she is feeling at a given time. You might want to start with a scale of "minus 5 to plus 5" that helps to let her know that you understand that she feels terrible and sometimes that number will be in the minuses and sometimes they wont. Or it might be easier for her to answer if you ask her about specific symptoms that she usually has issues with (i.e. how is your head feeling today? etc). I definitely agree with you that it is better to be proactive rather than reactive. I keep daily journals of my symptoms; activities; reactions, etc in an effort to figure out patterns, minimize setbacks, etc, but in my experience the regular rules don't seem to apply to POTS. I can do something one day with no ill effects, but another day that same activity could set me back.

Hi everyone, I just wanted to put this out there to find out how much sleep position affects your symptoms, if at all. My symptoms are greatly affected by the position I am in. I have one position that really works for me (bed elevated / right side) and I'm wondering if I am alone in this. Does anyone else experience these issues? Left side sleeping causes me to have chest discomfort. Back sleeping tends to lead to episodes of apnea (??). I have not been diagnosed with apnea as sleep studies are not available where I live. When I find myself on my back though, I inevitably wake up with a "choke". I'm not sure exactly if it's my heart or my lungs causing the issue, but I know it's not good. I woke with that last night and am pretty weak and exhausted today. Belly sleeping tends to lead to adrenaline rushes and tachy, which a few times has ended up with my heart in a "spasm". My doc said he isn't sure if it might be A-fib or V-tach or possibly something else (??) based on my description, so he's ordered a 14 day monitor, but I wont get it for another three weeks...argh! Are these things still in the range of POTS?? I would love to have access to a doc that knows even the slightest thing about POTS. I feel like my local doc has no interest at all in taking this on.

rubytuesday: Wow, that sounds like it was a great and thorough appt! I'm glad that your cardiologist picked up the phone and called him - I wish they would make things happen like that more often. Just wondering...did he give you a specific reason for limiting your salt intake?

Debbie, I didn't think I could relate to this, until I read your more detailed description "like a shiver gone crazy", I remembered that I did experience this. It only happened one time for me to that degree. For me, it immediately followed a pre-syncope episode that I had while sitting and actually began when I was laying on the couch with my feet raised up (to counteract the lightheadedness). I did feel cold (although the room was quite warm and I hadn't been cold prior to that moment) and began full body tremors. My son was actually piling blankets on top of me trying to "warm" me up. It probably lasted about 15-20 minutes for me as well. I have no idea what caused it, but thought maybe it had something to do with my temperature sensor being broken. I don't know if this is the same as what your daughter is experiencing or not - it seems that there is no end to the spectrum of symptoms we all experience. I know that I am careful to not allow myself to feel cold. I tend to overdress in layers or have blankets around me all the time.

Thanks, Rich! This was helpful & informative... I had pretty much dismissed using compression hose because I mostly always have my feet up, but I'm going to give them a try again after watching the video.