Goodr189 Posted March 24, 2016 Report Share Posted March 24, 2016 I'm not specifically talking about waking up in the morning. I am usually okay with that and getting up and about. It's when I actually have to sit down and do some work ( I work from home) and after eating that my symptoms start. My eyes have issues focusing, my heart rate creeps up to 120bpm while sitting, and I find I need to run back to bed and lay down to keep myself from feeling like my heart is going to explode. I thought salt was helping but it seems like it only does for the little attacks. Now I am stuck in bed depressed thinking this is my life now. Also forgot to mention that I can barely eat anything from 8am - 4ish. Once the afternoon is almost over I get my appetite back and I can get up and do some walking around the house. I've lost too much weight and muscle over the last few months and this has been ****. My doctor has me on Florinef which I take in the morning when I can get some food but I just started that about 5 days ago so I don't think it's working yet. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 24, 2016 Report Share Posted March 24, 2016 I have found I have major issues sitting at my desk too. I have much better success if I use my laptop while I'm in bed or on the couch with my legs up. I have found I have the same problem with eating. At my house, I eat on the couch with my legs up and I'm ok. But, at my mom's we eat at the table and I have a presyncopal attack every time. I have to excuse myself about 15 minutes into the meal and go lay down. For me, having my legs up makes a huge difference. Quote Link to comment Share on other sites More sharing options...
Amalia01 Posted March 24, 2016 Report Share Posted March 24, 2016 I assume your doctor mentioned compression stockings as well? I also have problems being upright a lot of the time even sitting in a chair. I lean on the side of the couch at times so I am not completely upright. Elevating your feet definitely helps. Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted March 25, 2016 Report Share Posted March 25, 2016 I'm in exactly the same boat (bed) since the acute onset of my symptoms 11 months ago. This post is so timely. I just now wrote my doctor about this very issue of the vicious cycle: my symptoms are keeping me horizontal, which is, I know, further deconditioning me....which is exacerbating my symptoms...especially POTS and OI. Yet, Goodr, I would encourage you to eat .. if it's just Ensure or sipping a smoothie during the day. We need energy to move, which I try to do...even though its mostly unpleasant. For the past six months I've been moving for at least an hour a day, with breaks. This includes light yoga 3X/week and getting to at least one appointment or doing a light errand 2X/wk. If I have to get to a doctor's appointment by public transit I do it...although it can knock me out the next day. I am finally getting little windows of pleasure from some of this. My great inspiration is my pen pal. This is her 19th year with severe dysautonomia (Sjogren's). We write daily and she makes me report (only she's allowed to push me ...she's going through **** and pushes herself). We somehow fell into this. I try to sit at my desk for these letters. So these are things to contemplate. You can see you are not alone in this struggle...thanks for bringing this up (so to speak!). Quote Link to comment Share on other sites More sharing options...
Amalia01 Posted March 25, 2016 Report Share Posted March 25, 2016 3 hours ago, Sylvie33 said: I'm in exactly the same boat (bed) since the acute onset of my symptoms 11 months ago. This post is so timely. I just now wrote my doctor about this very issue of the vicious cycle: my symptoms are keeping me horizontal, which is, I know, further deconditioning me....which is exacerbating my symptoms...especially POTS and OI. Yet, Goodr, I would encourage you to eat .. if it's just Ensure or sipping a smoothie during the day. We need energy to move, which I try to do...even though its mostly unpleasant. For the past six months I've been moving for at least an hour a day, with breaks. This includes light yoga 3X/week and getting to at least one appointment or doing a light errand 2X/wk. If I have to get to a doctor's appointment by public transit I do it...although it can knock me out the next day. I am finally getting little windows of pleasure from some of this. My great inspiration is my pen pal. This is her 19th year with severe dysautonomia (Sjogren's). We write daily and she makes me report (only she's allowed to push me ...she's going through **** and pushes herself). We somehow fell into this. I try to sit at my desk for these letters. So these are things to contemplate. You can see you are not alone in this struggle...thanks for bringing this up (so to speak!). Good points Sylvie. Keeping your blood sugar stable is essential to not stressing your body out even more. Quote Link to comment Share on other sites More sharing options...
yogini Posted March 25, 2016 Report Share Posted March 25, 2016 Can you work lying down? Have you tried compression? When I was sickest, I used to drink a big cup of broth a couple of hours before bed, followed by lots of water. This helped keep up my BP at night. During sleep your BP drops and then you haven't had any fluids all night, so you are dehydrated. I also keep water next to my bed so I can drink in the am or if I wake up at night. I think fluids are a huge part of why we may feel better at night. Quote Link to comment Share on other sites More sharing options...
yogini Posted March 25, 2016 Report Share Posted March 25, 2016 You may also want to read thru the forum on types of food. Many of us tolerate some types of food better than others. Once you ID what works for you, it can be easier to eat. Quote Link to comment Share on other sites More sharing options...
corina Posted March 25, 2016 Report Share Posted March 25, 2016 I start my day drinking a large glass of water (salted if needed), which helps me stay up to make breakfast. After I finish breakfast my meds (octreotide) are ready to inject and keep me going for about 3 to 4 hours! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 26, 2016 Report Share Posted March 26, 2016 I always Wake during the night I always have water when I go to the bathroom! In the morning I get up earlier so I can sit for half an hour before I have to get going i always have a electrolyte drink which I prepare the night before using a juicer and then an hour later I have a smoothie , don't tolerate food first thing in the morning it makes me sooooo tired! Quote Link to comment Share on other sites More sharing options...
Goodr189 Posted March 28, 2016 Author Report Share Posted March 28, 2016 I'm starting to realize that food, especially the heavy fat foods like bacon and sausage really mess up my symptoms in the morning. It could be histamine related since bananas in my shakes seem to do the same thing. Lately I've been sticking to hard boiled eggs with a nice green shake with some apples and ginger and my heart rate stays below 100 even without all the salt. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 28, 2016 Report Share Posted March 28, 2016 Bananas are killer for me....mast cell reactions all over the place....rashes, burning lips and gums, GI issues, spike in migraine. Quote Link to comment Share on other sites More sharing options...
kpflma Posted March 28, 2016 Report Share Posted March 28, 2016 Hi, someone mentioned an electrolyte drink. I am breaking the bank on pediolyte. I need a full quart before I get out of bed. Besides the problem of all that sugar, it is very expensive! Any ideas on how to get those electrolytes in the morning?? Thanks, Kathy PAF Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 29, 2016 Report Share Posted March 29, 2016 (edited) Hi Kathy, If you use the search function, you should be able to find old threads that include homemade recipes for electrolyte drinks. I've been using a brand of electrolyte mixes that are a little less sugar (I cant do artificial sweeteners.) and I find more affordable than the grocery store versions. Plus I can order on Amazon and it's delivered. They also have a mix that is meant to be drunk hot and tastes like hot apple cider. The brand is Skratch Labs. Edited March 29, 2016 by Katybug Quote Link to comment Share on other sites More sharing options...
Amalia01 Posted March 29, 2016 Report Share Posted March 29, 2016 Cool. Thanks Katybug. I had not heard of Skratch Labs before. Quote Link to comment Share on other sites More sharing options...
Goodr189 Posted March 29, 2016 Author Report Share Posted March 29, 2016 I use Skratch Labs. I buy the exercise version that has a bit more sugar but I dilute it and add sea salt to it as well. Helps make it last a bit longer and tastes pretty good too! Quote Link to comment Share on other sites More sharing options...
kpflma Posted March 29, 2016 Report Share Posted March 29, 2016 Thanks for all of your electrolyte suggestions! :-) Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted March 29, 2016 Report Share Posted March 29, 2016 I just went to Amazon to order the Scratch electrolyte mix and read it has calcium...can this be a problem for those of us with motility issues? Thanx. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 29, 2016 Report Share Posted March 29, 2016 I don't have any idea about that, Sylvie. I would check with your doc. Quote Link to comment Share on other sites More sharing options...
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