persephone Posted September 2, 2005 Report Share Posted September 2, 2005 It just occurred to me that I should ask, esp as I read on anotgher thread that many POTS people feel better later in the day cos of hydration.It's definitely odd- I get SO tired and achy by almost always 4pm ish. It's just odd!If I'm going to have to lie down in the day at any point, it will invariably be at this time.Anyone else get this? Anyone know WHY this could be?Also--do you guys find on bad days your walking goes really funny? As if you're drunk?I can't walk in a straight line when I'm feeling poorly, and it's like my feet don't bend- they sort of plod or flop on the ground, and my mum always knows when I'm feeling bad cos she can hear it in my footsteps cos of this heaviness. Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted September 2, 2005 Report Share Posted September 2, 2005 I seem to get very tired in the late afternoon and early evening. I get a second wind around 7pm for some reason. I never really thought about why. Quote Link to comment Share on other sites More sharing options...
persephone Posted September 2, 2005 Author Report Share Posted September 2, 2005 Yeah- that's like me- second wind after 7. how ODD! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 2, 2005 Report Share Posted September 2, 2005 Most days, sometime between 3 and 5pm, exhaustion hits me like a running into a wall. No matter where I am, I just want to lie down and go to bed.Nina Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 2, 2005 Report Share Posted September 2, 2005 I tend to have a really tough time early in the morning. I'm good from like 10AM to 2Pm and then I start crashing. By 3-4 I'm wiped out and around 7-8PM I get a second wind and if I don't go to bed by 10:30pm then my sleep cycle gets thrown off even more.You aren't alone but I don't really have any answers as to why this happens. Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 2, 2005 Report Share Posted September 2, 2005 Hi,I am exhausted at around 3:00-5:00 p.m.. I eat a little something and it helps. I also feel that I walk like a drunk.Ernie Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted September 2, 2005 Report Share Posted September 2, 2005 hey yeah I seem to get really tired out around 2-3pm and like9pm and need to lay down and take a nap..and yes..I often walk like a drunk person.. especially early hours of the morning.. or if I am getting ready to pass out.. Quote Link to comment Share on other sites More sharing options...
michiganjan Posted September 2, 2005 Report Share Posted September 2, 2005 That's me exactly. I get exhausted by about 4 p.m. but get a little better around 7 p.m. Once in a while I just don't rebound and then am crashed for the rest of the day.I thought it must be blood sugar, but I have tried eating a meal at 3 p.m. Makes no difference.Michigan Jan Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 3, 2005 Report Share Posted September 3, 2005 hi pers! me too! i HAVE to nap this time of day and have for the whole seven years i've been sick. i'm sort of like poohbear. but my days are even shorter...i get up around noon, nap 3-5, go to bed at 11. sad, i know. anyway, never thought about why either.hmmmm.....but, ya know what? my mom doesn't have pots and that's her sleepy time of day too. just wanted to say hi to you b/c i have been so out of it lately and haven't gotten to keep up with all of your posts and respond...but am thinking about you and reading as much as i can!emily Quote Link to comment Share on other sites More sharing options...
Eli6596 Posted September 3, 2005 Report Share Posted September 3, 2005 I get tired at 4 pm too. I always assumed it was the midodrine starting to wear off before my 5 pm dose. I may get a little second wind later after my 5pm dose because I lie down in bed after I cook dinner for my family.I don't walk like I am drunk but I do feel as if my speech slurs if I don't try hard to enunciate my words. I have bad problems with word finding difficulty during bad days or bad hours. It is so frustrating. I don't want to open my mouth but I work with the public, so fat chance.Karyn Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted September 3, 2005 Report Share Posted September 3, 2005 Hi Persephone - Usually by 3-4pm, I am wiped out too and have to take a nap, whether I want to or not I zonk out wherever I am, usually on the living room couch for about an hour. It doesn't matter if I sleep a little later in the morning or not, what time I take my medications, or anything. If I am out somewhere and don't get a nap, I wind up usually getting a dizzy spell or headache and then have to come home sooner than later anyway. Usually, about 8-9pm, I get a second wind and then am wired till atleast 1am. I have been sick for 3 years now and this sleepiness has been like this since the beginning, but when I get an episode, usually I have to take more than 1 nap a day - I feel like a cat!!! Beth Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted September 3, 2005 Report Share Posted September 3, 2005 I am a morning person also... I feel the best and usually use that time to do all my daily errands etc....4-6PM is exactly when I get that slump, and I rally again around 7 or so.....Funny a lot of us feel the same. Quote Link to comment Share on other sites More sharing options...
yogini Posted September 3, 2005 Report Share Posted September 3, 2005 That is SO weird! I get this too. I'd assumed I was just losing steam at the end of the workday. But I always seem to get a second wind right after I get home. I thought it had to do with the lighting at work, or just getting away from the stress. But now that I read all of your posts, I realize that it's just another crazy POTS symptom...although I am sure my doctor would look at me like I was from Mars if I mentioned it. It's funny how we figure out our symptoms from talking to one another, rather than to our doctors.Eating and resting do help with this. At Mayo they told me to sit with my feet propped up above my heart for an hour. If I remember to do this, it helps too! Quote Link to comment Share on other sites More sharing options...
persephone Posted September 3, 2005 Author Report Share Posted September 3, 2005 Hurrah--it's not just me! but at the same time I'm sorry you guys are suffering too like this.I don't know WHAT will happen if I have classes between 4-6 at Oxford, and because they're forcing me into self catered acommodation, I'm going to have to cook aswell. what aJOKE_ there's no way I could manage that the way I've been lately:(I tried to talk to someone again there yesterday and they said "Maybe you ought to consider deferring for a year"--but there are no guarantees I'll be any better next year. And they wouldn't say that to someone who only had one arm to cook with or some other visible disability, would they? They'd have to help that student.Why is everyone making it so difficult! ARGH! Quote Link to comment Share on other sites More sharing options...
ethansmom Posted September 3, 2005 Report Share Posted September 3, 2005 Yep, add me to the list! I get exhausted in the late afternoon right around 4PM and if I get the privelege of taking a nap it really helps...otherwise I do get that second wind in the evenings and can stay up pretty late with my best energy of the day. Mornings are tough all the time because the kids get me up so early! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 3, 2005 Report Share Posted September 3, 2005 Pers, until I met Teri, I lived on cereal and take out. I sometimes managed to make pasta or eggs on a really good night, but my typical dinner was a bowl of cereal with soymilk.Some of my friends thought I was a vegetarian b/c I never had any meat products at home. However, the issue reallyw was that meat would just spoil in my fridge before I got around to cooking it.The good thing for you is that now they have many precooked items, like roasted chicked strips, which you can put on a salad, or over pasta, or just heat in the microwave with some veggies and have a better-rounded meal than cereal!I also loved pizza b/c it covered most of the food groups dough=grain, sauce=veggie/fruit depending on how argumentative you want to be, cheese=dairy and protien, toppings=more veggies & possibly meat.Nina Quote Link to comment Share on other sites More sharing options...
Eli6596 Posted September 3, 2005 Report Share Posted September 3, 2005 Mighty MOuse,You made me think of a book I recently read. Ethansmom you may be interested too. The book is called "Cereal for Dinner" It is an excellent book about moms with illness who also have small children. It is a supportive, reassuring book. Someone mentioned the book on this website months ago, and I really enjoyed it.Karyn Quote Link to comment Share on other sites More sharing options...
persephone Posted September 3, 2005 Author Report Share Posted September 3, 2005 Thanks guys- of course, I don't remember if I ever told you that the POTS has left me unable to tolerate dairy and wheat...and I'm a vegetarian!I may as well stock up on rice krispies, eh? Ho hum...I mean I wouldn't mind, but I'm not even particularly thin on this diet- still weight in at 145lb! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 3, 2005 Report Share Posted September 3, 2005 My only good time is for about 2 hours after I get up. Then it's all downhill from there. So I try to get my little "jobs" done early. (feed the cats, the dog, cat box ) As far as eating, I have to eat protein every couple of hours. I couldn't be a vegetarian with this illness...m Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted September 3, 2005 Report Share Posted September 3, 2005 Hey that's interesting. I'm at my POTSiest between about 10:00am and 1pm (and right when I wake up), and then usually need to nap in the late afternoon. Sometimes I sleep from about 11-9, and then nap from 11-2, (and sometimes from 6-7 or so) and then sleep at 11.As for dinnertime, I usually use my 'second wind' to cook something, whether it's a time-consuming vegan stroganoff (that thankfully allows good quality sit-down time) or a hummus sandwich consisting of bread and hummus! But whenever I cook grains and beans I always cook extra so I can use the leftovers, and I try to get as much premade stuff (whether sauces, spice blends, veggie combos, canned goods, as I can afford and manage to carry home from the store without toppling over halfway. Hey, perse- how do you know that POTS made you wheat-intolerant? Did you just cut it out and you noticed a difference? I've got major digestive problems/IBS, but I cut out gluten and wheat for about 3 months and didn't notice any difference. I'm vegan, so I don't do dairy, and it doesn't get better on the rare occasions when I don't get so much fiber, either.I don't suppose there's any sort of "meals on wheels" program in the UK, is there? Sorry they're being so insensitive down there!! Quote Link to comment Share on other sites More sharing options...
persephone Posted September 3, 2005 Author Report Share Posted September 3, 2005 Hurrah! another vegan!!! Fancy exhanging recipes anytime? Well, i don't know that wheat intolerance is caused by pots in my case, but i became intolerant after a course of antibiotics following a virus, so my theory is that it must have killed the glutase and lactase enzymes in my gut.And I also reaed that people with POTS are more likely to have difficulty in digesting these things...more blood rushing to the tummy etc. It all seemed to fit together in my case. Although it doesn't help my pots to cut out wheat, it certainly stops me bleeding (yes, BLEEDING) and bloating. The pain I had was so bad before I sussed the wheat intolerance that I used to get rushed to hospital with suspected appendicitis and have to have morphine My biopsy for Coeliacs showed up clear, but my GP said I show all the symptoms, biopsy aside, so she assumed it was in the early stages, as oin too early to show up on a biopsy perhaps...I wonder if POTS people are more likely to be Coeliacs?I think being wheet free vegan is a generally healthier way to live- no processed stuff, no E numbers etc...god knows what I would be like if I ate regular stuff like normal people! probably even worse!!!good to hear from you though, Megan! Hurrah for POTSy vegans! :-Dp.s: meals on wheels just owuldn't happen for someone my age. and I should point out that last time I was in hospital the vegan meal sent from the kitchen for me was BEEF and GRAVY--yup, for real. That is typical British understanding of diet for you!!!! Quote Link to comment Share on other sites More sharing options...
persephone Posted September 3, 2005 Author Report Share Posted September 3, 2005 Hey, perse- how do you know that POTS made you wheat-intolerant? Did you just cut it out and you noticed a difference? I've got major digestive problems/IBS, but I cut out gluten and wheat for about 3 months and didn't notice any difference. <{POST_SNAPBACK}>Forgot to ask--Megan, have you thought about yeast? that was one of my most potent intolerances--and it's quite common in women- causes funny periods etc.I cut yeast out for over a year and noticed a big difference. Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted September 4, 2005 Report Share Posted September 4, 2005 That makes sense about the antibiotics... Hmm nope I hadn't thought about that. Definitely worth trying though. I don't suppose that you guys have sprouted bread over here in the UK, huh? Because I LOVE bread and could suvive on bread and olive oil for a surprising amount of time! My friend just asked me if I thought veganism caused this. I said I don't know any other vegans in DYNA, and I have normal levels of B-12 and iron, and I've never broken a bone, so I fail to see the connection. The first time I began to feel lightheaded every day was about a year after I became vegan, but I'd been having other signs of autonomic dysfunction for as long as I can remember (temperature regulation, heat intolerance, digestive issues, almond-shaped eyes, high palate, noise and light sensitivities....etc.)I don't see how cutting out cholesterol and lots of saturated fat, and eating tons of fruit and veggies every day would cause a heart condition. Dr. Robertson (Vanderbilt) said he admired me for it and said that he considered me very healthy except for the autonomic nonsense. Anyway, I'll give the yeast thing a go just in case, and let you know.Glad to hear that you're doing better from the bleeding and pain- that doesn't sound like fun!I'm sorry I don't have any other advice than buying the few prepared foods that might be available. And also to come up here to Lancaster, cuz there's a vegetarian cafe with lots of vegan and GF/WF stuff. Quote Link to comment Share on other sites More sharing options...
persephone Posted September 4, 2005 Author Report Share Posted September 4, 2005 I'm sorry I don't have any other advice than buying the few prepared foods that might be available. And also to come up here to Lancaster, cuz there's a vegetarian cafe with lots of vegan and GF/WF stuff. <{POST_SNAPBACK}>Lancaster? where's that? You can't mean Lancaster ENGLAND, surely? I'm prolly just being dim again! Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted September 4, 2005 Report Share Posted September 4, 2005 Ha ha it's about an hour northwest of Manchester on the west coast. Quote Link to comment Share on other sites More sharing options...
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