Lauren78

I am curious as to what allergies most of us have. I have read in several places that people with POTS tend to have allergies...common, unusual (mostly to foods), drugs, etc. I personally am allergic to peanuts (very common in general pop, not pots related), bee stings (again I think general pop), and codeine. I haven't taken very many drugs to know other sensitivities to those. I do know I have a dairy intolerance to certain dairy. Skim milk is fine. Some cheese is fine. Other cheeses, certain yogurts, some ice creams, etc make me very mucusy and have me clearing my throat for hours (much to my fiance's delight lol ). So...what are you allergic to?

Okay, everyone...here are the four articles I am planning on using right now. If there is another article out there somewhere, less than 3 years old, that would be of great benefit and has lots of info please let me know. Also, I am trying to find more information specifically on how the autonomic nervous system is involved but haven't found anything real informative. Any ideas? Articles I have: Two by Blair Grubb: "The Postural Orthostatic Tachycardia Syndrome: A Concise Guide to Diagnosis and Management" and also "Neurocardiogenic Syncope and Related Disorders of Orthostatic Intolerance." Mark Thieben, et al. "Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience." Peter A. Brady, et al. "Inappropriate Sinus Tachycardia, Postural Orthostatic Tachycardia Syndrome, and Overlapping Syndromes." Thanks everyone for your help!

How very interesting! I never would have thought that this may be a POTS or ANS thing. I am the same way! I have very sensitive hearing to things others can not hear without complete silence. I get kidded that I have dog ears because of it. However TV, music, etc is impossible. My fiance' never understands how I have to have the TV up so loud, yet I can hear our neighbors phone ring in their house. I pass hearing tests with flying colors, so have never bothered having it checked out. I thought it was just me!! But it seems to be something that may be a common symptom. Very curious! Lauren

Hi Sandra. I too get breathless doing "simple" things. Housework, walking up stairs. Sometimes for no apparent reason it just seems hard to get a good breath. Exercise definitely does it. I had the peak flow done, failed it miserably too. I had spirometry done...similar thing. They have you blow into a device three separate times to measure lung capacity. It wouldn't even register because I couldn't blow long enough or hard enough. They never looked into it further, but it was just a GP. I have thought of seeing a pulmonologist just to make sure it isn't anything else. I know I don't have asthma. I figured maybe it was a POTS thing. I would be interested to find out how things go for you... Lauren

Hi Angela...good luck! I am sure you will do fine. I find that when talking to a doctor who doesn't know about a condition the best resource is to provide them research backed and credible information on it in a friendly, non-confrontation manner. My mom had to do that a lot, she has had FMS for 10 years, and in the beginning a lot of doctors told her it was all "in her head." So she started taking scientific and medical research articles on her condition with her for the doctors...not only did they appreciate it, and learn about it, but were more willing to take her seriously and help her the best they could. So my suggestion is to go in with an open mind and a positive attitude that he will want to help. And take along information about POTS from a credible source, such as DINET (their POTS section has great info ofcourse!), the AHA, or any other source. Hope that helps! Lauren

Thanks Flop, I will see if I can find that book. Sara, those sites are great! I particularly like the hirewire one. And the article you referred me to from the AHA. Thanks! Anything in particular everyone would like stressed to people who don't know about POTS? Thanks for the help...this should turn out to be a great paper!

No problem. I am 29 years old and this paper is for a college English research writing course. The intended readership for the paper is various students of various backgrounds...lots of nursing and med students, as well as students studying other majors not related to the medical field. The purpose of our research papers are to thoroughly research and write a paper on any topic of interest to us to share with the class. Thus I choose POTS. Mainly because it's of interest to me and I want to find out more, but also so that others can learn about it to. So I am just looking for info maybe not on the DINET site that would also be helpful. I need to have a minimum of three different resources, with DINET being one of them. I also thought it would be fun and informative if people here on the board had input or ideas or resources that would make this paper more beneficial to those reading it to learn more. I hope that helps!

Hello everyone! I have a huge research paper to write for one of my classes at school, and the advantage to this is that I get to choose the topic! So I have decided to do the paper on POTS (which was a no brainer!) because I want to learn more about it and help make others more aware. The paper will be distributed to each student in the class, as well as the instructor. So this will be a great opportunity for others to learn about POTS. (hey if it's good enough I will see if I can get in published in a magazine too). SO...I am requesting help from all of you...not in writing it, but in giving your opinion, ideas, what you know about POTS, any articles you may have that will be helpful in my research, any books, etc. What would you like to see in the paper? Is there anything specific you really want others to know? Anything you want to add will be helpful. I know I can find enough information on my own to successfully write this paper, but I really thought it would be beneficial to get input and resources from all of you, since we all have POTS. Might make a better and more informed paper for others. I think this is a great opportunity and look forward to anyone who would like to give their input! Thanks, Lauren

Hi Kate...be careful with the Vitamin A. The glyconutrients you want to take already have 100% of your daily value of Vitamin A in them. So I don't see the reason that you need to also do the drops...

Sports bra's are a big can't do for me, they are too constrictive and really increase the feeling of not being able to breathe. I am glad to know I am not alone in this, it seems like the tight bra or pants effective a lot of us with POTS. Must just be another one of those symptoms then, huh? The humidity does it to me too! I think it's because the air is so "heavy." It's horrible!

Congratulations! That is very exciting news! I am very happy for you!

Hi Jacquie, Sorry to hear about all that, it sounds no fun! I get migraines, but mine don't make my vision blurry. Lights bother me, sound bothers me, and movement can make me nauseous. I would be a little concerned because of the blurred vision and severe headache. Those can be symptoms of a stroke or a myriad of other things. I guess if you are feeling fine now it's okay. But if it happens again I would really like you to have it looked into. Just to be on the cautious side. Of course migraines can be different for everyone, so it may have been one. It's hard to say. I take Zoloft-25mg a day. I just started it this week though, so can't tell you how well it's working yet, as it can take up to two weeks to reach full effects. I will tell you the first few days I was on it I was nauseous, light headaches, and felt "out there" (like when you take a cold medicine and it makes your head feel funny). Those symptoms all resided though about the 3rd day taking it. I don't know if any of that was any help...but hopefully somewhat.

Well at least we're not alone in this! It is weird though. Luckily for me I don't have the same predicament up top, I can get away with no bra in most shirts! But I do always wear one when going out. I get the same feelings you do, can't breath, hurts. And with the pants it aches and can't breathe too. It is very odd, but at least I now know at least two people out there get that too!

Hello! I have a question. My clothes bother me. Does this happen to anyone else? Anything tight on my chest especially...like sometimes my bra's really bother me, like it's constricting me chest (even when they are on the last hook). Makes it feel like it's hard to take a deep breath. I also notice this if I wear anything with elastic around my waist. Feels like it is squeezing my stomach or intestines and is not comfortable. Even winds up making me feel sick. Anyone else experience this, or am I just crazy? Lauren

Hi Tammy. I would venture to say yes. When I have a tachy spell it leaves me very tired. Rarely I get really bad shakes afterwards, like I am freezing when I am not at all. Generally it just leaves me feeling tired. However, I would say to talk to your doctor just to make sure it isn't anything else. Better safe than sorry. Everyone is different and my tiredness may be different than your weakness. I think it's probably the same, but safe to make sure anyhow. Lauren

Do you find it helps then? I am not sure what to expect. I am sure it will help with a lot of symptoms, but I don't think it will help with the fast heart rates. I think that's why they want me to take the Midodrine also (which I hope to get soon, insurance is being a pain about it). They have me starting on 25mg every day and then going in for an appt in a month to assess where I am at. Lauren

Hi Sara and welcome! I have only been on here for about 2 days, but have already found it a tremendous help and everyone is really nice. Wow, that is quite a vigorous study you have planned for yourself. I think that is great! I too am a student, but not in such a science-minded field. I am in school for dental assisting and then plan to go onto hygiene. Good luck on your Ph.D.! I am sure your research will help many others in the years to come! And you're right, it feels so good to have a diagnosis. I think not knowing what is wrong makes it that much more unbearable. Anyway...welcome! Lauren

Thanks Rachel! I have checked out the "what helps?" page and found some good suggestions. I am sorry you can't be as active anymore, but it's nice to know I am not alone. It is hard, because I used to be very active just like you...and now a light hike (I mean 70 year olds pass me like it's nothing), or even doing laundry gets my heart rate up and makes me lightheaded. We manage, but I would like to hopefully get back to a more active status one day. LOL. Well I am glad to know I am not the only one with that feeling. I assume it is POTS related, I don't know what else it could be?! My thyroid's been checked and is fine, so I think maybe it's just one of those things? Thanks for your help!

Hi all. Until my insurance will help cover the cost of Midodrine my Doctor has decided to put me on Zoloft. He said that the properties in this SSRI help with neurocardiogenic syncope symptoms. Does anyone take this for POTS or for vasodepressor syncope? Does it help? Thanks!

Hi Anna, welcome aboard! I am new on here too, and was just recently diagnosed with POTS and vasodepressor syncope. I know what you mean by feeling relieved to get a diagnosis! I hated that I had all these symptoms and no one knew what was wrong for a long time. It is also a little scary, like you said. I have discovered there are varying degrees to POTS...some people have bad days but are generally okay and manage well enough, whereas others are debilitated by it. I have read in multiple places that pre-teens and teens who acquire POTS may have a potential to outgrow it, so that's a good thing. Have the doctors started you on any meds yet? I just joined this board, but everyone on here has been really nice and helpful. So this is a good place to get information, and interact with others with POTS too. And of course to just talk about what you're going through so you don't feel so alone. Welcome! Lauren

This was very interesting, and I loved seeing the results. I am a SO of S with no previous and no history...as far as we know. I don't remember having any illnesses to bring this on and there is no family history. HOWEVER, my mom does have both FMS and CFS, which are in many ways related to POTS. So I wonder if that is connected somehow? Funny, I was always so worried about getting FMS that I never saw the POTS coming! I do fall in the childbearing age range for women, am fair skinned but dark hair, and have a petite frame. It's been really interesting reading through this one! Lauren

Hello Angela, Nicole, and Mary...thank you all for the warm welcome. It is so nice to found such a great support group with great information and nice people. I don't feel so alone in this now. Hmmm...sounds like I should find a way to get the Midodrine. The anti-depressant sounds like it will at least help with comfort and sleeping, but maybe not the tachycardia and low blood pressure. I will have to check out the Therma-tabs...thanks for the tip! That sounds much nicer than loading everything with salt and taking away the natural flavor! To answer your questions Angela, I realize I wasn't clear on the BPM. The 250bpm was the highest it got during the tilt table (and only lasted a minute or two). I mostly hung out in the 170-190 range during the test (which was 35 minutes in length). My resting heart rate is 51, my supine heart rate is in the 60's. Upon physical exertion, like lifting 20 lbs weights at the gym, is anywhere between 130-150. The highest I recorded getting it on my own during intense stair climbing with lots of elevation and stairs was 180. From what I know that does seem normal for sinus tachy, right? My blood pressure is typically 105/70. I have recorded it as low as 90/50. I don't know if it has gone lower than that or not. Does that give some better info? Thanks everyone! Lauren

Hi Katherine! Thanks for the warm welcome. =) I would love to have a copy of that article. My email is harmony7877@yahoo.com. I am glad to hear you can do things more now..and a dance class! I can't even imagine, but that would be wonderful. I do exercise at the gym 3 times a week but it takes a really long time because my heart rate goes up VERY quickly and I get lightheaded. But I try my best. I saw YAZ exercises on this site and thought I would try those too. What kind of SSRI do you take? I read something somewhere that Celexa is good for POTS. Ever heard of it? Thanks...I am glad I found you guys too!

Hello everyone...My name is Lauren and I am new to the group, and new to having POTS also. I have been having palpitations, fatigue, lightheadness and a myriad of other symptoms for quite awhile now. I was blown off initially, which was a year and a half ago, after having heart studies (MRI,CT,EKG,Holter) done that showed nothing, and very frustrated. After having an episode again and going to a new electrophysiologist he took one look at all my symptoms (palpitations, pre-syncope, lightheaded, bloating, nausea, exerciseintolerance, low blood pressure, tachycardia upon standing/incline,and many more) and he said we needed to do a tilt table test. I went last Thursday and had the test done and had major symptoms (including 250 bpm and low blood pressure) and finally syncope. The test was torturous! But glad it led to a diagnosis, which was POTS and also vasodepressor syncope. I am relieved to have a diagnosis, but also apprehensive about the future. I don't know anyone who has anything like this, and feel sort of alone...so glad to find some POTS groups! My life has been effected (prior to the diagnosis) because I can't do anything I love to do, like hiking, exercising, or much physical exertion. It's rough because I am only 29, about to be married, and my fiance' is a very active person also. So this is an adjustment for us. (And I hope that maybe with meds I can do some of that stuff again). I was told to increase my salt intake and drink lots of fluids. They were going to give me Florinef, but family history of problems with that made it a no go. They prescribed Midodrine, but my insurance covers next to nothing and it would be $150 a month (being a FT student, that is out of the question). So they said they will probably prescribe me an anti-depressive because that works with POTS also and is cheaper. Anyone ever heard of this? Anyone on anything like that, and does it help? Any other things, medicine or non-medicine, that might help? My biggest problem is exercise, hiking, and household chores really bother me lots (pretty much any physical exertion). Also, a few symptoms I haven't found anything on is being uncomfortable when lying on my side or on my stomach. Feels like I am crushing my heart. Any one else get this? And I also sometimes get pressure in my throat, like it's being squeezed but I can swallow fine. Anyone have this too? Alright, I just realized this is very long, so I will stop now. Sorry this was so long everyone! Glad to know you guys are here and I look forward to getting to know everyone. =) Thanks, Lauren