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Everything posted by Bella127

  1. The feeling of being "out of it" after eating is a symptom I get all the time. It's worse if I eat a big meal, and if I have a lot of carbs. Try to do smaller meals and see if it makes a difference. From what I've heard from doctors, the cause of this is postprandial hypotension, or a drop in BP upon eating. Blood is diverted to our gut for digestion, leaving it to "pool" in the digestive tract/essentially away from our brains, which accounts for the feeling dizzy or woozy, or worn out/tired/sleepy. Here's an excerpt from merck.com: "Postprandial hypotension is an excessive decrease in blood pressure that occurs after a meal. * Dizziness, light-headedness, and falls may occur. * Doctors measure blood pressure before and after a meal to diagnose postprandial hypertension. * Eating small, low-carbohydrate meals frequently may help. Postprandial hypotension occurs in up to one third of older people but virtually never occurs in younger people. It is more likely to occur in people who have high blood pressure or disorders that impair the brain centers controlling the autonomic nervous system (which regulates internal body processes). Examples of such disorders are Parkinson's disease, multiple system atrophy (Shy-Drager syndrome), and diabetes. The intestine requires a large amount of blood for digestion. When blood flows to the intestine after a meal, the heart rate increases and blood vessels in other parts of the body constrict to help maintain blood pressure." Not sure about the flushing...that could be because her body is trying to regulate that blood flow that is being diverted to her gut & so it further exacerbates her other POTS symptoms & she appears flushed out of fatigue from the whole process? Has her POTS doctor talked with you/her about postpranidal hyptotension? That may be something to bring up. It wasn't brought up to me so much, but I started noticing that I would feel sooo incredibly tired/out of it after meals. I feel better when I have more protein than anything else, and carbs definitely make the "tired" feeling a lot worse. Let me know if this could be part of the problem or sounds like it?? Hope this helps! Chrissy
  2. So sorry your daughter is going through a rough time with this. It is by no means easy...made more difficult I know by having to switch meds, etc. I do agree with EarthMother - you don't want to stop any of those meds cold turkey. And also, I have had reactions just like your daughter had to a new medication (needless to say, I never took that one again!). Crying, not wanting to be around anyone, etc. Very unlike me. Make sure you watch her closely and talk with her doctor about this if you're noticing a big change like that. It's pretty common to have emotional reactions to those types of meds. It is scary to see/go through. Just keep talking with her to see how she's feeling, and once you wean her off the medication, you should be able to tell a difference if that's what was causing her to be emotional. Take anyone and give them POTS though, and teenage hormones...and being emotional is kind of a "normal" part of going through this. You just want to be sure if it was the meds or if this is truly how she is feeling. She will go through times when she feels like she cannot deal with this, wants her "old life" back, etc. and waves of that are I think something that anyone would go through when dealing with this. Just keep an eye on her, keep talking to her so you know if she is feeling more like herself/just going through a tough time, or if you think it's the medication. It might not be any coincidence that she has calmed down since not having the meds...again, something to talk to the doctor about. I hope you're holding up okay with all of this...it's hard on everyone. Please PM me if you need anything. I did get an email from you and have a draft going writing back (it's a bit long...). Chrissy
  3. Ditto. Have a little infection/cold going on right now and my best bet is saline irrigation. Although, I find the Neti Pot doesn't "get through" all that gunk well enough, mostly because the flow of water is so gentle. I use a brand called "Neil Med" and it is a squeeze bottle. I find this better because I can regulate the pressure of the water going into my nose. You do have to be careful not to squeeze the bottle too hard and force too much water in though. It works really well. I am also taking Mucinex right now, and it really helps to thin out all of the mucus. I notice a difference within a half an hour. And the good thing is, I haven't noticed any side effects with either method (and I get sinus infections a LOT, so have used both of these a number of times). I would say though if you are dizzy, sit down while doing the irrigation so that you don't get even dizzier or feel faint. Sometimes the pressure can do that if you aren't used to it. Let us know what ends up helping...and feel better! Lots of fluids!! Chrissy
  4. I haven't always been this way. Before I got POTS, I was fine as far as this goes - I attended school and did okay in the mornings, although I wouldn't call myself a "morning person" beforehand, either. It was never like this, though. I did have to catch the bus at 6:30am before POTS, and was able to do that...until I started getting symptomatic and felt really ill in the mornings. I'll probably PM you later for some questions, because I am curious as to what could have set this off? Especially since I wasn't like this before POTS. Thanks! Chrissy
  5. Hi Guys... Can we try to get as many of us as possible to post what a 'routine' day is like for them as far as sleeping/waking, activities, etc.? Time you wake up, take meds, daily activities, when you're the most awake and most tired (I think this would be really interesting), when you shower, and when you go to bed? How many of you have issues with POTS related to your sleep/wake cycles?? I sleep fine, fall asleep quickly, sleep through the night without waking much, etc. But when it comes to waking up, that's another story. Whenever I try to wake up, my body is simply NOT READY. It's like my legs don't want to work yet. I have gone to a sleep doctor (that's the technical term, right? ) and he thought I had Delayed Sleep Phase Syndrome, but I don't remember what he said I could do about it. I'll have to look in my medical notes and see. But it felt like a pointless appointment, with him saying "Yes, strange, your sleep patterns are off." - without any real help. This has been one of my main issues since being diagnosed with POTS in 2001. Mornings are IMPOSSIBLE for me. My body just feels very sick, my eyes can't even stay open, and my legs might as well be Jell-o. I wish I could function like a normal person, with normal hours. I'm especially concerned about this because I'll be done with college this year, and would LOVE to be able to work even part time somewhere. It's tough because I don't end up feeling "POTS-normal" (my normal baseline) until maybe...3-4 pm? I could be somewhat active during that time, followed by a crash around 7 or 8. So my energy (if you even want to call it that??) doesn't last long. By after dinner time, I take another Mestinon, which seems to help me stay alert, but I am still soo physically tired. A normal day for me goes like this: Wake around noon or 1pm, take meds (.1mg Florinef, 60 mg Mestinon & Cymbalta for fatigue), eat granola bar & drink Propel with meds. Then I basically sit and wait for my body to feel decent, which takes a while. Even now I am more "out of it" than usual, and its 4pm. I'll do school work for a couple hours, which includes reading/writing, typing essays, etc. and posting them online. By this time the brain fog is ridiculous, and I end up becoming mentally and physically exhausted from the work. I try to take my shower after this is done to give my brain a rest. But some days, showering just doesn't happen and I end up staying home all day (making me feel like more of a bump on a log). Then around dinner time I'll eat a small meal, take another Mestinon to help with alertness/fatigue (it does help somewhat), then maybe do a small errand with my mom or meet a friend for a few hours. Sometimes I'll do this later in the day (especially if I had pushed my shower back to after dinner time) and end up getting home at 10pm or later, and this is when I end up feeling my best! So, the times when I feel better and actually WANT to stay awake and accomplish things are at night time when I should be getting ready for bed. Then I am asleep by 1am or later, depending on what I did that day. Some days, like last night are earlier than that. I end up having most energy at night then, and that's when I stay up to do homework, read for class, etc. and to be socializing with friends, since I don't get to do that during 'normal' hours. Does anyone else have these problems? I feel like if I got a schedule going with sleeping/waking, that would be half the battle with my POTS. Taking classes online though, I can't really afford to do anything crazy right now and risk my grades (as far as drastically changing my schedule, as I have timed due dates every day and must be able to be alert & focus for them). So I feel a bit stuck at the moment, since I want to help myself live a "normal" schedule/life, but don't know how to go about it. The problem is, I end up listening to my body more since being sick, and believe that it tells me when I'm too tired, when I should be productive, etc. But I do end up feeling like a lazy bum sleeping late, and wish I could enjoy mornings and be productive. I do worry about potential jobs also - how is an employer going to grasp that I just can't "do" mornings? So wondering if anyone here has a similar schedule? Thanks! Maybe this will help give me some insight. If anyone has any suggestions, please let me know - I'm feeling a little desperate for some help. Chrissy
  6. Hi Angela, I know I've had terrible sinus issues since my POTS diagnosis. I got POTS in 2001 following bronchitis, and since then, I have had upwards of I think 35 sinus infections. It seems I get one every 6 weeks. Have you ever been to an ENT? Maybe you have a deviated septum or something that requires treatment from nasal sprays, etc. I have had 2 surgeries and they seem to have really helped. Of course, the last one was just this past December, so lets cross our fingers that the effects last. I know how frustrating it can be to keep getting sick. Right when you start getting better, you're sick again - on top of POTS symptoms. It's not a fun place to be. I am finishing college online now because by the time I get ready to go to a class, drive there and walk there, I'm already done for the day. Plus, if it's an infection on top of that - forget it! I have heard of some people with POTS who never get sick, and others all the time, so I don't know the answer. Have you been tested for allergies (environmental or food?) Have you had your immune system checked? I would definitely do that. I've had mine checked and it's fine, so the doctors still have no idea why I get (or used to- knock on wood!) sinus infections so often. I also seem to catch anything and everything. It's kind of like an elderly person - if I'm around someone with a cold, I'm going to get it. The rest of my family doesn't usually catch a thing. Hope this helps somewhat...feel free to ask any questions, and hope I can help! Chrissy
  7. Thanks for this info. I did go to a sleep doctor at some point a couple of years ago, but he didn't really grasp anything about POTS. I want to say he diagnosed me with Delayed Sleep Phase Syndrome. I can get up around noon or 1pm, then go to bed past midnight and I'll feel better than if I try to have a "normal" schedule. I wonder now if I should get an actual diagnosis using the methods you described, versus the doctor listening to my sleep cycle & telling me I have this. Nothing was done about it because I didn't care for the doctor, and most of the time I attribute my weird sleeping patterns to "oh, it's just POTS". So is there actually a connection then, between POTS and these types of sleep disorders? Do we know this for sure? I think that's really interesting. It does make sense. Like you, I am completely worthless in the morning. My body feels just plain...sick. I'm weak, and it's like my body isn't even awake yet. My legs don't want to work, nothing feels right. So I wonder if it's possible that my body still thinks it should be sleeping, and that's what's going on? I had read something about this a while back, around the time I saw that doctor. There was some type of sleep schedule proposed that I found, and you had to follow it for about a week to "reset" everything. I tried it part way but it was very difficult as I was taking classes at the same time. Maybe it's something worth trying again? I usually don't feel "POTS normal/awake" or able to function until probably 2pm at the earliest. It's sad because I'll be graduating college this year, and I would love to get that under control. I think it's my biggest issue - I can't work normal hours, and don't know what to do. Not being able to function in the mornings is a much bigger deal than others make it out to be - it really messes with a lot of normal routines. If you have any insight, please let me know. Did you suspect you had something like this before being diagnosed officially? What are signs to look for? I know I have some sort of Delayed Sleep Phase Syndrome, just not sure what. Thanks, Chrissy
  8. I sent you a private message since I decided to write you a novel... Feel free to write back whenever you have the time! Hope to hear from you!! Chrissy
  9. Stacy, I sent you a private message. Chrissy
  10. Yay Melissa!!! I'm so glad that you're home! It was great to see you, even if it was for a short time - I'm glad we got to catch up somewhat and I got to see how you were doing! Of course, I'll be thinking of you and hoping that you are able to stay home and that you will keep feeling better each day. Chrissy
  11. Shelby, I'm sorry that you had to go through this. Yet, it shows us that there are different kinds of people out there; those who can handle life stressors, and those who can't. I have a lot of friends who just can't "deal with it", and some members of my own family also. I know we hear this all the time, but a big thing is learning not to take it personally (we'll see when I take my own advice... . At least this guy was able to tell you "I can't handle this" - try not to think of it as "YOU are too much to handle" - because YOU are not; in reality, it's the situation itself. It is seeing someone you care about feeling sick, & feeling helpless, etc., that I think is most trying on some people. I'm glad you did find this out now, and just know that there are good guys out there, somewhere, who can handle this situation much better. They may need a break every now and then, not from you, but from the situation - as for many people, it is their first time dealing with anything like this. You did the right thing in being open from the beginning, and I'm so glad you are able to move on now with some clarity and to know that the right guy is out there somewhere! We are so much more than patients with POTS - and the right people will know this and see it, and love us for who WE are. Chrissy
  12. Just wanted to let everyone know - I clicked the link and read the information (I'm in Ohio, so I was getting excited about this!), then called the number at the bottom for more information. I got a call back today that the study is no longer available - Brandy (who was listed as the contact person along with the phone number) is no longer working there, and the rest of the staff just hasn't figured out how to remove the information from the internet. Figures. Chrissy
  13. Hi Ernie, Have you checked to see if there are any studies going on that you could participate in?? I know that they paid me to participate in 2006 - but I don't think it was for the full amount of travel, hotel, etc. Still, this may help. Which doctor are you seeing? I went to Dr. Low. I would call the Autonomic Dept. (or whatever department for the issue you are going to be seen about) and see if there are any studies going on, and maybe they can work something out. I had testing done though, a tilt table among other things, but I also got an appt. at the end with Dr. Low to go over results, etc. So you may want to check in with the doctor you are going to and see if it would be worth it for you/if there is anything available and maybe you could participate in a study and then still be seen on an appointment basis with the doctor. Please let us know what happens. I hope this helps! Chrissy
  14. I'm with Ernie on this one. Nausea has been a symptom I've had from the get-go, and one of the worst, and nothing ever helped - until I tried Zofran. Now that is my "go to" medicine if I'm having really bad nausea. I would ask your doctor about it and see what he thinks. I personally had no side effects from it, and know that for me it works very quickly. I use it as needed, but only try to use it maybe a couple/few times a week, depending. Have you ever tried motion sickness relief bands? They sell them at Triple-A Travel Agency. They're wrist bands that have little 'pressure' points that push down on a certain spot on your wrist - supposed to be for those with motion sickness in car rides, etc., but I did find that they helped relieve my nausea somewhat in the beginning. Let me know if this helps and what your doctor says! I hope you find some relief soon. Chrissy
  15. Melissa, I hope you are feeling better SOON!!! I read the update that you had your surgery on the 4th...hope that you are recovering well and feeling as well as you can right now. I just had sinus surgery this past week, but if I am recuperated enough and you are still in Cleveland, I would loooove to visit you. If I'm feeling decent enough to make the trip, I'll call and find out the details of where you are, etc. Hugs!!! Chrissy
  16. Maxine, First of all, I'm sorry that these people can't seem to stop hounding you or your husband about this trip! Your family is obviously going through a stressful time, much less your health doesn't need the extra "weight" of worrying about how to get these people off your back...jeez!!! The last thing you need when you're unhealthy is people wondering why you/your family are not able to go and do things (wow, maybe it's because I have difficulty even showering??!)...ughhh it is so frustrating. I definitely agree with the "just say no" approach. Obviously you have tried this and they are just a very hard-headed group! I would say something like "I'm sorry you don't understand. As we have already discussed, we will not be able to make it this time, and I would not like to discuss this any further." And hope they leave it at that. It seems like NO amount of explaining/validating your reasoning to them will get through their thick skulls...and of course, you are not obligated to validate your illness to them. Some people will just never understand, and as frustrating as that is, the only thing we can do is "accept" it, learn that not everyone will "get it", and not let it bother us/get in the way of our health. I'm still working on doing this myself! Trust me, I've explained things to people until I am blue in the face, have given them literature, brochures, definitions, etc. and yet, I get the blank stare back (always a shocker) The last thing your husband should feel is guilty after it seems he works so hard for your family. I know it's hurtful when others don't understand and when they question you, etc., but try not to let it get to you...easier said than done, I know. You and your husband are making the decision that is best for both you and your family at this time, and that's it. It's your life, and you know best what you can and cannot handle at the moment, and don't let them tell you different. If these people bring up the topic again, I would change the subject. Just like that. Talk about ANYTHING else, as if you didn't hear them - and have your husband do the same. Eventually they should get the hint! Is there any way your husband could get together with these people for just a short time, maybe to have lunch or something and catch up? I don't know if your husband has that kind of relationship with these people or is close enough to them for that, but I say this only because maybe spending time with them that way would be sufficient, and a way for your hubby to still stay connected to them/not feel out of the loop even when he can't always participate. Hope this helps....keep us posted. Chrissy
  17. Facebook would be a great way to allow your friends to read up about POTS! Awesome idea! I have been on Facebook for about 3 years now, so if you have any questions, feel free to ask. Your summary is great! I find it helpful to include small, to-the-point articles when trying to get others to understand POTS - here's a great one where Dr. Grubb gets to the main points: http://www.stars-us.org/news/news.html then click where it says "read more" under- "POTS", Condition like running in place all the time Read More (PDF) ? and it will open it in PDF form. I think it is a HUGE thing that he says "it's like running in place all the time" - it gives people without POTS an idea of what it would feel like, and usually their reaction is more understanding than trying to explain all the medical jargon, etc. So you can put that link in a Facebook note, and let your friends read! As for posting it, I think you can post "Notes" on Facebook...similar to a blog. To do this, I'm pretty sure you have to go to the upper right "search" box on Facebook, and just type in "Notes", then add the application. The cool thing about notes is that you can "tag" certain friends in them - meaning that they will get a notice that there is a note posted for them to read. Hope that helps!! Chrissy
  18. Hi Melissa! Haven't talked with you in a while and hope you are doing well...please email me with updates if you can! I miss our talks!! As far as the Neti Pot, I haven't tried it. But I DO use the Neilmed brand of Sinurinse - it's a small bottle that you fill up with lukewarm water, and you use one packet of the sodium that's included in the "kit". You close the top, shake it around, and it's ready to go - really quick and easy to use. You turn to face the ground and squeeze the bottle, going in one nostril, and letting it come out the other. It sounds really gross, but it's not bad at all and you get used to it fast - especially since the results are awesome! If I have really bad pressure, etc. it helps almost immediately! You have to make sure you blow your nose gently beforehand and after, and that you turn your head to each side to drain your nose properly - it should have instructions included. And for sitting down, it would be easy to sit down on a bench or chair and just do it over a bowl - that's what I do when I'm having a bad day. I also don't really have allergies, but vasomotor rhinitis...so I get the symptoms of allergies, congestion, pressure, etc. I use the Sinurinse daily to help with the feeling congested, etc., and also to avoid getting sinus infections, which I get all to frequently. I've heard the Neti is great too - I just like the bottle because since you can squeeze the bottle, you can regulate the force of the flow of water which is nice - with the Neti you just kind of poor and let it flow. You do have to be gentle though because it's tempting to squeeze too hard to de-congest yourself and then you get the ear popping, etc... Let me know if you end up trying any of these and how they help you!! Also, are you on any medications for the nasal symptoms? Astelin (prescription spray) seems to help keep my nose clear. Chrissy
  19. Have you tried seeing if your Dr. has an email address? If you could write directly to him, or one of his nurses, that should be a big help! Chrissy
  20. I am DEFINITELY worse when it rains and right before it rains!! I heard it has something to do with the barometric pressure affecting our BP. I can feel my blood pressure going lower, and usually get headaches plus I feel more dizzy. All of my symptoms flare up. I think this is also because when it rains it gets humid too...which is never good for us! You're not alone in dealing with this weather stuff...I know it stinks, I just try to avoid being outside, which is sometimes impossible to do. Tylenol will help with my headaches sometimes though! Chrissy
  21. Glad to hear that it's now over with!! It's just the waiting from here on out... yay! I actually just got denied SSI for the second time (even though I had a lawyer) and so I'm taking the lawyer and going through to the hearing process also. Just have to fill out the paperwork, and I'm not sure how long it will take. I am a little nervous, just because I know it's something people can't SEE. And also because of the ridiculous stuff SS wrote back to me - that I "can stand or walk for 6 hours a day" if I did that, I'd be on the ground! and that my symptoms "aren't severe" (yeah, okay, that's why I only have enough energy to shower & then I'm done with "activities" for the day.) How did the hearing work? Does a judge just ask you questions, etc.? Are they similar to the questions on the SSI forms? Glad to hear the hardest part is over for you! Chrissy
  22. I'm on 30mg of Mestinon once a day, and I haven't noticed anything as far as weight loss. I've been on it for a few months now. Just because I haven't noticed anything doesn't mean that it's not a side effect of the drug, though. Do you have a decreased appetite, or any symptoms that you feel are contributing to you losing weight? I know one of the side effects of Mestinon (the reason I'm not yet up to 60 mg) is that it really speeds up the whole digestive tract...and lets just say you can get an unpleasant side effect as a result! Chrissy
  23. Hey Sarah! I DEFINITELY notice this too. The last few days have hit me harder...it's been in the mid 80s until today, and now it's a bit cooler. It totally knocks me out! I think it has something to do with the barometric pressure...at least that's what I've heard. I've always been more fatigued with weather changes, and it's just something I've learned to get through somehow, rest more, drink a lot of fluids, etc. By the way, we are Facebook friends now!! Yay... Chrissy
  24. I completely understand what you mean. I think that's great that you are working though!! You are obviously trying very hard to keep up with your job. It is so hard to want to achieve so much in your career and yet be held back by your health; something you have no control over. I am finishing my Bachelors online right now, and have wanted to teach kindergarten since I can remember! It would be too much to go through student teaching for me (full time for a year, 40 hrs/week), so I kind of have to put the dream on hold. It is very hard, but one thing I've found that helps is to look at alternatives that you can do NOW, which will help you to get to that dream later. For example, since I can't major in Education and do student teaching, I am completing an Interdisciplinary degree in Psychology, Sociology, and Education. I figure I can work with children in a different way (more "behind the scenes", something flexible, etc.) until I am fully able to commit and put everything into the teaching profession. Is there a way you can "move up" and take on a little more (maybe not necessarily "more", but something different, a new role, etc.) at your job, while still maintaining some type of the flexibility you will need, at least until you are better? Maybe if you talk to the Director, there is some special project(s) you could be assigned to with more responsibility but that you could still tailor to how you feel, etc.? You never know how or if someone is willing to work around you at your job! Adding in something a little different that still lets you move toward that dream of climbing the career ladder may really be of big help to you (as getting a Bachelors in a related field and working with children at some point to work up to teaching has been to me). Also, little hobbies that don't take up much energy (reading, scrapbooking, etc.) can really help to feel productive when you have the energy (although I know extra energy is hard to come by!). Chrissy
  25. I have this too. As your doctor said, I have always been told the same - "it's just a POTS thing". I don't know if it's because we're lying flat and our bodies are adjusting (although you would think that just being upright would make you symptomatic, not necessarily lying down), or if it has to do with body temperature, etc. I have found that it helps to have, along with the top sheet, some cotton blankets on the bed in case I get cold (which will happen during the night- especially my FEET!). The cotton blankets "breathe" and I don't find myself sweating as much as I used to if I were to use a thicker blanket made of some non-breathable material. Do you also have any kind of feather topper, etc. on your mattress? I was doing this for a few months because my bed seemed to hard and could get uncomfortable - but I think this ended up making me sweat more, because it was made of polyester. I took it off of my bed and we'll see how I do. I do keep a fan on during the night, and also have an A/C unit in my window in addition to central air in the house. I know most of us can't handle warm temps - but what does your doctor say about the night sweats - any specifics as to why this is attributed to POTS? Chrissy
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