sunisshining Posted April 17, 2005 Report Share Posted April 17, 2005 Hi everyone,i hope you are all having a Sunday that isn't full of many if any symptoms. That's what i hope, at least. I don't know what to do. I have a cardiologist who put me on lexapro but i have to wait two weeks to see if it works - in the meantime, i'm so nauseous and don't feel like eating, i'm exhausted, and i can't do anything. the doctor doesn't think that the nausea and all of my symptoms (the muscle pain, extreme fatigue, etc) are caused by pots, so he said he feels like he's turning into my primary care doctor but he's not. And that me and my family's "daily emails" and pages make it an awkward situation and that he has no patient like me and that i keep it from being a therapeutic distance. He says i should see my primary care doctor about the nausea cause it's not in his field and my family and i are asking too much of him and have been and he told his supervising doctor this. But the problem is that my primary care doctor is at the student health center. i'm too tired to go there and know they'll just run tests for the nausea and say nothing is wrong and that it's all in my head or that i just have to deal. He admitted to my mom that it is a heart problem but he doesn't think it causes all these symptoms. Oh my gosh, i've been to soooo many doctors and nothing is wrong with me! Imean, i have pots, but apparently that's not everything, so everything except the fast heart rate must just be something imagined. he didn't say that, but what else am i supposed to think. i'm so frustrated that there are no doctors in california who know about this. everyone talks about doctors in ohio but i don't have the money to go there and these doctors here have such egos and i'm probably worked up a bad reputation in the whole stanford medical community and probably the bay area. and he claims that i have to be patient because they found something that no one for six years had found - yeah cause we handed it to him on a silver platter after talking to people with the CDC or NIH...i forget which one. and at the first appt he and his supervising doctor said i just needed to exercise more and thought i had some mental problem going on. i'm sooo frustrated. i don't even feel like i have enough energy to go to school. i'm at home for the weekend. but i don't want to be away from my friends and i'm embarrassed to email my teachers again and i don't know what to do. my family is here for me and God, and i do have good friends, but they, like me, can't understand why my doctors can't just be more on top of things. where should i go what should i do? i was just lying on the kitchen floor crying but not much cause i didn't have the energy to. and i had to take time to get up and get some water so i'm trying to gradually sip it to keep it down and maybe that will help. i don't know what to do. these doctors don't care and don't help and i feel so stupid because of everything he told me on the phone - that maybe my primary care doctor doesn't respond because i overwhelm her like i overwhelm him with info. my mom says this is bs because what are doctors for? but i'm starting to blame myself... ahhh. help!love u lots,sun Quote Link to comment Share on other sites More sharing options...
dawn Posted April 17, 2005 Report Share Posted April 17, 2005 Sun,I know how debillitating nausea can be. If you have a high heart rate for long periods of time that can make you nauseated. Think of the runners who vomit at the end or during the race. Being dehydrated can also make you nauseated. Are you keeping a log of your heartrate? Do you have someone who can check it while you are sleeping? When I was first diagnosed my heartrate never was below 120, usually ran 140 range all day. I felt nauseated all the time. A lose dose beta blocker (inderal 10mg) took care of the tachycardia. Lexapro made me nauseated also, all the SSRI's did. But it does get better as your body gets used to it. Have you tried anything over the counter for nausea?Doctors seem to think when we have a fast heart rate it is due to anxiety and stop there. Did the cardiologist do any testing? I went through that for a couple years until I had a tilt table. I would guess your cardiologist does tilt table tests or knows someone who does. I think you should make a list of your symptoms by severity. Tackle each problem one at a time. Finding a good internist would be where I would start if you have health insurance. Staying with one physician who sees you when you are symptomatic is important. If we go to alot of doctors they tend to just pass us along, I think seeing the same physician helps them address our issues and access us much better.Wish you luck.I feel for you.Dawn Quote Link to comment Share on other sites More sharing options...
kare Posted April 17, 2005 Report Share Posted April 17, 2005 Could it be the lexapro bringing on the nausea? I know if I don't take my effexor with plenty of protein and carbs I will get very sick and stay like that... Also, my sisterinlaw takes lexapro and she says that it makes her sleepy so her dr. told her to take it right before bed and works fine that way.. God bless!Karen Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 17, 2005 Report Share Posted April 17, 2005 So sorry you are having such a difficult time both inside and out.When I crash I go through the terrible nausea. Most of what you describe sounds like POTS to me. I remember my cardiologist (who I adore) coming in to the room one time and saying to me "You know POTS is really difficult for us doctors ..." I stopped him dead said "NO, its REALLY difficult for US patients with POTS." Then I smiled warmly so that he knew that I knew what he was trying to say and he smiled back and just said "I know."I really don't have high expectations anymore from the "proffessionals". Not to say they aren't doing their best, but in my years with this I think it has always come down to my own body's wisdom finding a way out over time.We all need a little more grace when we are suffering -- first to ourselves and then to all those around us who wish they could do more.Good luck to you on your healing journey. I hope some insights will come to you soon that will help.EM Quote Link to comment Share on other sites More sharing options...
geneva Posted April 17, 2005 Report Share Posted April 17, 2005 So sorry to hear of your difficulties. I wanted to add that for me, nausea is often something I get when I am pushing too hard. Could this be a possibility for you as well? If I increase my rest time, it will generally go away. In the beginning of POTS I had nausea 24/7, not sure if it was the constant tachy as suggested in an earlier post or just that EVERY little movement constituted overdoing at that time. I have never found any med that I could take to relieve the nausea but I do use peppermint oil, a few drops on a tissue and inhale -- especially when the nausea comes while in the car.good luck to you and I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
KathyP Posted April 18, 2005 Report Share Posted April 18, 2005 Hi Sun;I am sorry to hear about the problems you are having on top of feeling horrible. I think your cardiologist said the things he did because he can't admit that he doesn't know what else to do. Don't feel bad about him making you feel like you are over stepping. Your Mom is right!! He is a doctor. That's what he is there for. It is his/her job to figure out what overwhelms you. If he can't do more for you he should have, at least, recommended another physician to take over.As I understand, you live in California? Have you contacted the State of California Medical Association? Or, you can contact the State Medical Association in the state that you are currently living in. That would be the least expensive way to look for a doctor that is familiar with POTS/Dysautonomia without going from doctor to doctor. I don't mean to talk down Dr. Grubbs, whom everyone here seems to like really well. I live in Ohio and I don't know anything about Dr. Grubbs. But, I am sure there are other doctors out there, in every state, that are familiar with POTS/Dysautonomia. The one thing I can't stand about doctors, these days, is that they can become very arrogant and just see you as a number instead of a really human being with a real illness. If they can't treat you in the office then they don't have time for you. Well I think that doctors are a dime a dozen. You just have to find one that listens. It may take you a very long time or it may not. Be PERSISTANT! Keep asking lots of questions!!! That's your right!! Don't let this doctor's actions make you feel hopeless!! You will eventually find a good doctor who will comfort your needs. You will find that you know more about this syndrome then most doctors do. You need to find one that is humble enough to want to learn from you, which is rare. But keep up the hope that there is a suitable doctor out there for you.As for you nausea, my guess is that it is a symptom of you dysautonomia. With the medication that you are on, on top of the stress with this issue, going to school, and having POTS it's no wonder that you are nauseaous. And the muscle pain might be from inactivity. Do you get the chance to excercise or at least take a walk? I know it is very difficult when you are extremely tired but it is very important to keep moving. Keep up with drinking alot of water. Take supplements such as Calcium, Magnesium among others.I hope this helps you somehow. I have been through the same thing. I was seeing a doctor for 8 years that would just tell me "it's nothing" and send me on my way. Then when I read what he wrote in my chart convinced me that he was just another arrogant, uniformed physician. He wrote when I was there, he just listened to me rant on about my "ghost" symptoms then said things to make me feel better and then sent me home. (Always, Always, Always, get copies of you medical charts from every doctor you see!! It is your medical right to have them!!) I hope I don't sound too negative about doctors but I have alot of experience. I am sure you will have success in finding one.I hope you feel better soon. You will have good days too!! I will say a prayer for you. Take care!KathyP Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted April 18, 2005 Report Share Posted April 18, 2005 Sorry to hear your having such a hard time. I send you my prayers. I also had constant nausea and it can be very debilitating. One symptom of POTS is slow gastric emptying (gastroparesis). I have that so it makes me nauseous. Maybe a GI doctor could help. I eat small meals and stay away from food that is hard to digest. I also got so extremely nauseous on lexapro 5mg I stopped after 3 days. It made me extremely hungry and nauseous at the same time which isn't a good mix.I wish you all the luckDayna Quote Link to comment Share on other sites More sharing options...
calypso Posted April 18, 2005 Report Share Posted April 18, 2005 I also am wondering if the nausea came first or if the Lexapro brought it on. I had horrible nausea when I started that drug. It subsided after a month.If it was preexisting, then have you been given Zofran or any anti-nausea drugs? Do certain foods make it worse, or have you tried modifying your diet?You really probably should be seeing an internist or generalist who can manage all of your health problems. Cardiologists are so strapped for time these days that it seems they only really truly know heart stuff; they're not always up to date on the latest treatments for other problems like nausea and often don't really know how to manage them. Primary care doctors deal with nausea very often, though, so you may get better results this way.It's hard to know what is the result of POTS and what isn't. We all have that problem at times. Wish I could help you more.Amy Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 18, 2005 Report Share Posted April 18, 2005 Mother Earth is right this seems to be pots in a box!!!!! Carbs can make us nauseaTED BECAUSE SOME OF US POOL BLOOD IN OUR STOMACHES AND CAUSE IBS. As for your Drs... be patient with me I have been married to a FP since he started medical school in 1975. He has for almost 20 years been teaching residents. Pots is an autonomic nervous system disorder, so lots of different diagnosises. I had 12 prior to being diagnosed, and I had the best doctors available. My husband opined that it was some sort of autonomic problem but he didn't know of pots. Remember doctors are not one size fits all. If you can't feel that there is mutual respect then its time too look for someone else. I got diagnosed after fainting in a hospital parking lot 200 miles away. My mom was in hospital. I was unconsious in the parking lot for 3hrs until someone noticed me from their office on the 2nd floor. I was still out for 3 more hrs after, while getting cat scans, IV's etc.....They said I was dehydrated. I knew that I drank 4liters that morn, so after passing out at my in laws until I could travel. I was admitted when I returned and had every test possible. I was in a week. One morning my husbands colleague came to have coffee and visit. I talked to him about what was happening, and he said that sounds like------a doc who had to retire because of this, and to see Adreanna. When my pcp came and couldn't find anything or discharge me I told her about AD, That day I hat the tilt a whirl and was diagnosed. The moral of this the longest message I've ever typed????? For 27 years I have had pots since my first child was born. Been to tons of docs,,,,,tests too many to count. Moral a pcp diagnosed me, and is now having this a part of training for all residents. Your cardologist is probably part of an HMO and paid by the ####and answering your e-mails etc. takes away from "production". I think you should sit down with your cardiologist and ask if he/she care enough to learn about if not who to recommend. Remember cardiac problems are a part of our disease. If your doc is willing then set up a regular every 4-6 week appt. schedule until things smooth out. Meanwhile keep looking for another doc. PS usually health service docs the first choice, but can care for the unexpected.SORRY SO LONg Miriam Quote Link to comment Share on other sites More sharing options...
sunisshining Posted April 18, 2005 Author Report Share Posted April 18, 2005 Thanks guys! You are all so helpful and just made me feel better emotionally! Well, i've learned to never trust doctors again! Why? because my older sister mad me contact the student health center here because she said it was someone's job to help me because i couldn't hold much of anything down and could barely move around. so i called and got an after hours appointment - i was dehydrated and they had to start an iv there so that i wouldn't have had to go to the hospital. then they gave me some medicine to take when i get home for the nausea because it knocks you out. i just took it with a sip of seven up and hope i can keep from puking so that it will start to work. they hope that it will work so that i can get in more liquids and not have to go to the hospital. so i'm sitting very still, trying to not puke, with my puke bucket next to me. and i have to go back to the health center tomorrow morning. another thing was they yes, my pulse was indeed high at the office and they said it was irregular, too. i've had extra beats before but my holter showed they aren't all in a row, they're isolated. but whatever the case, they were actually concerned/cared. but my sis says that even if they weren't, it doesn't matter because i know something's wrong with me so i just have to find people to help. Family is awesome. so, being not so dehydrated and having supportive people and especially all of you has put me in a better frame of mind. i'm not great, but i'm better than i was. so yay! a victory. and i think i am gonna request a copy of my records. i'm scared to see what's written -my cardiologist was like slapping me on the hand for asking for help and it turns out i'm dehydrated. he had sent in a slip for me to be referred to an internist at stanford, so at least he did that. but he was acting like until then, i was on my own, unless i couldn't keep water down and got really dizzy and then i'd have to go to the er. Um....aren't we always dizzy? so, i may seem negative about doctors but i've had bad experiences, so i just need to realize that like my sis says, their reactions are no reflections of me. Anyhow, my teachers are being really understanding and i'll probably take an incomplete in my psych class b/c someone explained to me how that all works..so iwon't have to drop it. and my other teacher was like "don't you dare come to class on tuesday!" and my other teacher was really sweet and understanding. so, yay! thanks so much to all of you. the muscle probs were actually always around and i had actually been exercising more over spring break, which i think is what caused this major setback/slide, but here at college, i also ride my bike to classes and walk around. but, with this past week, i haven't had the energy to take a shower or walk to the bathroom barely. But, i think the iv helped somewhat! yay!hugs to all of you...and yeah, i think i was starting to feel nauseous b4 the lexapro, but i get nauseous really easily. i think medications just make it worse - because that's what happened in 12th grade when i lost 40 pounds. ok, i'm stopping typing, but the iv actually helped my muscle pain so far, i think.im praying for all of you and your're so great! all of you!thanks sooooooo much!I'm smiling now! and i'm looking forward to get to know all of you better. cause we can endure this together!yay for community!love you lots,sun Quote Link to comment Share on other sites More sharing options...
nantynannie Posted April 18, 2005 Report Share Posted April 18, 2005 Hi Sun,Where in California are you? I found a doc in Southern California from the DINET website. Her name is Frisca Yan-Go. She is at the Westwood UCLA. I have the strangest list of symptoms (or so I thought) and it turns out that almost all of them are from Dysautonomia according to this doc. Hope this helps.Ann Quote Link to comment Share on other sites More sharing options...
wareagle Posted April 18, 2005 Report Share Posted April 18, 2005 Hi Sun..I hope that you're beginning to feel a little better now that you've had and iv and some meds! I had to laugh when your Cardio. Doc. said that nausea and fatigue aren't symptoms of POTS..I used to have constant nausea..and still have the fatigue. You definately did the right thing by seeking med. attention..even though we have lots of symptoms with POTS it's always good to get things checked out! I know it's difficult when you run across doctors who really don't know about POTS and instead of addmitting it they just dismiss it! I've actually started educating my doctors with info. from DINET. So far, most have been very open to checking out the website and have been very receptive to learning more about it. Perhaps you could print some of the basic info. out and bring it to your student health center..or if you find another doctor before your initial appointment ask them to look at the DINET or NDRF website for an overview. There are also a listing of "specialist" so maybe your docs. could contact one of them if they have questions.Anyway..hope you're feeling better soon..it sounds like you usually do pretty well..bike riding and going to school..I'm jealous Don't get too discouraged..like the others said you may have just over done it and caused your body to throw a tantrum!Keep us posted,MichelePS. What psych. class are you taking? It was my minor at Auburn..my favorite was abnormal psych. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 18, 2005 Report Share Posted April 18, 2005 SunNOTE TO SELF:::::::When I feel like this I need IVLike Cookie monster;;Some of us have scripts from our docs so we can get IV's when our BP is low, and darlin if your layin on the kitchen floor chances are you need fluids.Take the list of symptoms and (to cheer your self up) sayYou might be having an autonomic storm if--you want to puke and have nothing toYou MIGHT be having an autonomic storm--IF you are lying down and feel like you need to lye downJeff Foxworthy always makes me laugh so I talk to my husband like this, when I am storming or pots holing......The other thing , call the medical society and ask for the name of someone who deals with dysautonomias..And, the best thing I have is a therapist. He only sees people with medical problems,he calls and checks, gives adarn. When I get frustrated or depressed, he is there. It is a gift to yourself. I am a minister/chaplain and I hope you don't think of this as a weakness, its empowerment!!!!Peace, Rest and Blessings Miriam Quote Link to comment Share on other sites More sharing options...
sunisshining Posted April 18, 2005 Author Report Share Posted April 18, 2005 Hey guys,i live in northern california. i am actually doing better. the iv and the medicine helped. it helped my allergies, too, randomly, altho i don't really care about those! I am taking sips of seven up and am hoping to eat some crackers, however, i don't really want to because i don't want to start a puking attack on sunday night cause i might have to go to the hospital then and i don't want that. but, we'll see because i know my body must need food. oh well. whatever the case, i'm lying on my bed leaning on my big stuffed panda, again. :-) I actually cycle between feeling really horrible - like saying that i feel horrible is an understatement. I can barely get out of bed for like ...ever and i get really nauseous and out of breath, etc. and standing up or even taking a shower..that's a joke! But then, i've had times where i feel almost like people without pots. ANd i think i'm better and it all went away but then WHAM! It comes on back and hits me hard and i'm down trying to figure what knocked me off of my feet. have any of you had times when you've had to lie on the floor until you get enough energy to go somewhere in the house to lie down or to get onto a bed? So, basically, i've been cycling off and on with this for over six years. It is hard for me to get used to the idea that i actually have something and it won't just disappear and never come back. And i try to make myself think that if i start feeling slightly better then i am totally better and thinking anything else would be me being lazy. But, you guys are helping me come to grips with this. Right now i've hit a pots hole (thanks for the explanation about that in the othe post), but the iv and medicine helped me a little. ANY relief, i consider an extreme victory.hugs!thanks for all of your concernps-right now i'm not back at the bike riding state yet...i'm working on taking a shower..but i took a bath when i was home this weekend...maybe if i take a really short luke warm shower? warm/hot showers make me feel sooooooooo like i'm going to faint and i take like forever and a half to recover. i am in intro to psych, btw. Yeah, that part about abnormal psych looks interesting.later!sleep well everyone!love u lots and praying for u all,sun Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 18, 2005 Report Share Posted April 18, 2005 Sorry this has been so awful for you! I don't really think there are very many doctors west of Ohio who deal with pots. Even Mayo in Arizona doesn't. That has been a real problem for me. If it makes you feel any better, my cardiologist asked me to discharge myself after he did an ablation he shouldn't have and made about 20,000 dollars for 6 hours of work, and then realized he made me worse. When I told him that, he said, please discharge yourself from my practice as I don't like your attitude. I told him where he could stick his tude. My primary, is wonderful, but I only see him every two months and don't have an email for him. I guess I just live with it all, because it's the best I can do under the circumstances. Hang in there and find yourself a doctor that does give a hoot. They are out there, just a little hard to find sometimes. I deal with lots of nausea too. It's part of the party. IV's are great when you need fluids fast, so you don't get in that viscious cycle of being dry and too sick to do anything about it. Feel better soon, and maybe taking a semester off to give your body a rest wouldn't be so bad. My son is going to school and he has just learned to limit what he can and can't do, so it will just take him a little longer to get through school. morgan Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 18, 2005 Report Share Posted April 18, 2005 Perhaps you need to set a new "SET POINT" for you. Instead of expecting to feel "normal" expect to feel like you just got over a illness and work from ther. If you cant do anything standind and it sound like you shouldn't. Just do floor exercises, leg lifts, crunches. Keeping those muscles in shape pumps blood better. Also compression hose, a must for the pots patient this year. Good night Miriam Quote Link to comment Share on other sites More sharing options...
Rosa Posted April 18, 2005 Report Share Posted April 18, 2005 My daugher, 19, has POTS For 6 months now we have been taking her to regualr & alternative doctors.Here is what the doctors told us. Young women develop this due to getting a virus, or loss of minerals caused their new periods, followed by a virus or after giving birth to a new baby. All of which puts heavy stress on a young woman, especially if her diet is not that great.What 2 doctors want her to try are: 1) Urine injections. 2) Drinking liquid mineral, take Red marine algae, take 2,000 mcg of selenium daily. 3) Fasting on her own perfect medicine, her own urine, 3 days each month. It sounds OK to me because it is free, safe and her own. 4) Eating right for her blood type.Has anyone tried that yet?Rosa Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 18, 2005 Report Share Posted April 18, 2005 Rosa, The problem has to do with keeping the blood volume viscous enough to flow to the brain and heart. This sounds scary to me. Has she tried increases sodium,fluids etc....licorice root helps alot of people. I think this would be low on MY list. The pregnancy thing is that our veins arent tight enough to pull in and up the blood and we are left with that weakness. Leg exercises that can be done in bed help that. Good luck. Miriam Quote Link to comment Share on other sites More sharing options...
Gena Posted April 18, 2005 Report Share Posted April 18, 2005 Hi Sunisshining,Hope your still feeling the positive effects of the IV. You said you were sipping on Seven Up and nibbling on crackers. Just remember that refined sugars and refined carbs can really aggrevate our tachycardia and other symptoms. I realize you're probably just going for something to ease your nausea at this point.Just make sure you're drinking plenty of water (with sea salt if your stomach can handle it) and replenish your electrolytes with Gatorade or a sugar free electrolyte drink like Smart Water. Staying hydrated is very important for keeping symptoms under control! You may want to ask the health center or your primary doc if it might be the Lexapro that's adding to your nausea. Maybe you can reduce the dosage until your body adjusts?I'm so glad you have loving family member and friends who are there to support and help. Just remember, you will improve once you get find the right treatments that your body responds to! Just take care of yourself and don't worry about anything else right now. P.S. Do you have a BP monitor to monitor your blood pressure? You can take these readings to the doctor.Gena Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 18, 2005 Report Share Posted April 18, 2005 RosaQuite frankly, these suggested treatments sound questionable to me.Has she been evaluated by an electrophysiologist? neurologist? endocrinologist? If her iron is low, an iron supplement should help reliieve anemia, which can make POTS symptoms worse.Has she tried increasing salt, fluids? When I was very sick, my electrophysiologist recommended 3 liters of fluid a day. She may also benefit from compression hose.I don't know about eating for blood type--others on here can respond to that--but certain dietary changes (low sugar, high protein) can be helpful.If these things don't work well enough, there are many other treatments available, both from conventional and alternative medicine, that you can learn about at this site.Katherine Quote Link to comment Share on other sites More sharing options...
sunisshining Posted April 18, 2005 Author Report Share Posted April 18, 2005 Hi all,hope you're having a pleasant day, doing whatever is right for you! I'm actually doing better. i spent a couple more hours at the health center this morning for my follow-up. i managed to keep some fluids and crackers down while i was there and i am feeling less nauseous today. They and i think i'm getting over the big vomiting spell. my doctor there told me to hold off on the lexapro for now until my stomach has completely resolved itself - and she gave me a prescription for zantac to take to help heal it/reduce the acid (but only to take when i already have some food in my stomach so i won't start vomiting again). My orthostatics were fine while i was there. i didn't get the exact numbers...but my orthostatics are usually fine in a doctors office, although, once i've been sitting down for longer and then they take them, then my pulse gets higher. But, whatevs. But i have been diagnosed with pots, but i don't get low blood pressure and i got a call from the neurology clinic and i'm supposed to go there in june...even tho i've been to a neurologist elsewhere before and i don't really want to go to more doctors..but maybe they'll be better than cardiology.i'm tempted to say "i don't need medicine for pots, i don't have pots." But my past holters have shown that my pulse is too high and yeah. but sometimes i question if i have anything because i've been told so many times by diff doctors that nothing's wrong. but these docs haven't said that i don't have pots just cause my orthostatics are usually not too alarming - but sometimes they are abnormal. But, i need to realize that i do still have this so that i won't make myself worse!Do any of you ever feel like this ?whatever the case, at least i'm doing a lot better than last week and this weekend. now, i need to catch up on psych so i can take the test so i can still be in the class! I'll try to do leg flexing wheni'm studying in bed...those help, right?thanks!i'm praying for all of us!love lots,sunbut id on't have low bp so i wonder if i still belong here? Quote Link to comment Share on other sites More sharing options...
wareagle Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Sun..glad to hear you are feeling better today! Just wanted to let you know my bp doesn't really drop all that much either..at leaste not all the time. My doc. explained to me that the criteria for POTS really looks more at your heart rate. ie. if it increases by 30bpm. from laying/sitting to standing..or goes over 120bpm then you can have a dx. of POTS. I think I've got this right..if not someone feel free to correct me!! When I was originally evaluated at Mayo in Jacksonville that was something their specialist actually ignored..b/c my bp is always in the low range and there wasn't much change during the brief TTT they did..BUT my heartrate did go up to reach criteria! I was lucky to find a doc. that knows his stuff and had additional testing to determine that YES I do have POTS. Sorry..I'm babbeling now..is that how you spell that..babbeling? Okay..enough! I hope you continue to feel better! Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 19, 2005 Report Share Posted April 19, 2005 One of the criterion for "POTS" is that when you stand up your BP dropd therby making it postural orthostatic intolerance. There are other dysautonomias that are diagnosed, but POTS is Stand up bp down go boom Miriam Quote Link to comment Share on other sites More sharing options...
Gena Posted April 19, 2005 Report Share Posted April 19, 2005 Wareagle - you are correct about the definition of POTs - it is dx'd by the increase in heart rate upon standing. Not all people with POTs get a drop in blood pressure and it's not the defining criteria for it, but the heart rate is.Sun - I can't remember from your previous posts if you were dx'd with POTS with a tilt table test? If not, you may want to have this done. There are other things that can cause high heart rate like IST (inappropriate sinus tachycardia and other heart realted malfunctions). Have you had a cardio do an echo, EKG or stress test? And did your holters show your heart rate was high all of the time or just for certain periods?I know it can be very confusing and frustrating. As much as I'm sure you dont' want to see another doctor, you may just want to clarify for certain that it's POTs. In the mean time keep trying the usual treatements for POTS, like water, sea salt, gatorade, compression hose, etc. And try not to let yourself get deconditioned. My symptoms were awful the first couple of months until my body started to respond to the fluids, salt, etc.(I can't remember who initially started this post or if I'm answering the original question. Oh well, I'm sorry. Major brain fog this a.m.) Quote Link to comment Share on other sites More sharing options...
sunisshining Posted April 19, 2005 Author Report Share Posted April 19, 2005 Thanks Wareagle and Gena,I haven't had a tilt table test. that's what i was referred to cardiology for but they never gave me one. i don't know if they have one at Stanford. You'd think they would, but oh well. I have had an echo and ekg at children's hospital. fine except the echo showed something that the echo technician was telling thhe doctor something that looked like it indicated i had an innocent murmur. but she didn't really respond to him, and even if i did have that, it's innocent, so nothing's wrong. also, i have an echo scheduled for the 22nd of this month b4 my next cardioology visit..i don't wanna see those cardiologists again..but they want to do another echo even tho i had one done at children's across the bay. grr. also, i've had two holters and an ekg here. when i was sleeping, my pulse was fine but it was high pretty much throughout the day. there were some times when it was in the 80's but usually between 100 and sometimes even 150..i think it went to 180 once..if i remember correctly..maybe not. this is what i remember the cardiologist saying, so i might not have it all right if my memory is being bad. also, i do remember him saying something about sinus tachycardia. So, i just did the resting and standing pulse procedure that they have on DYNA. i don't have a bp cuff with me, but i did my pulse. After laying for 15 mins it was 85 beats per minute. after standing for one minute it was 115bpm. after two mins standing it was 116bpm. after 3mins standing it was 118bpm. then after 4mins standing 117bpm and after 5 mins standing 111bpm. but isnn't the heart rate suppoesd to continue going up if u have pots. the only thing i was doing differently for the last readings was standing with my arms down. maybe i'll try it again later when i have time. whatever the case, i'm still better than last week! yay! haven't thrown up yesterday or today! Altho i woke up getting nauseous AND with cramps..yep, that time of the month, too, and i was like, ok, i'm gonna take a fourth of the nausea pill - my dr. said that 1/4 will not make u so loopy and it takes the edge off the nausea. surprisingly, i think it helped my cramps...don't know why but oh well..happy times cause that pain was going to not help the nausea!so, i did not go to lecture this morning cause i woke up feeling weak and i need to take my psych test tomorrow ..or sometime later today...and tomorrow i have 3 classes all in a row, so i'm trying to rest up since i'm feeling pretty noodle-like...or like a silk scarf trying to stand up. when i was little we had this picture book about the body and there was one picture trying to show the importance of our bones...it showed what a ballerina would look like without bones - she was all wobbly and ripply and wavering....so, that's my code word to my parents when i'm not feeling well "ballerina with no bones"Hugs!I'm thinking about all of you!hope ur having a great day or at least tolerable! if not u can reply here or send me a personal message and i'll pray for u individually, too!love u waaaay more than lots,sun Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.