bebe127

Thanks Joann. I know you've been going through a terrible time and I hope this flare of yours ends soon. I do have better days, but most of the time I have so many symptoms at once, it's hard to differentiate. It doesn't seem to matter what my vitals are ie: high bp and hr or lower bp and hr, I still feel poorly most of the time. Eating is hard for me too. I feel especially worse after dinner (which husband puts together) and can really only eat about a quarter of what I used to. After dinner, I'm on the couch for about an hour feeling like death warmed over until I go to bed and lay in my room for hours trying to relax. I sleep poorly, very restless and fragmented and always seem to wake with the shakes (on the inside if that makes sense), it feels like tremors that wake me each morning, but my hr seems fine. I just don't know anymore. I just want to feel better, as most of us do, but as much as I push and will myself to feel better, nothing seems to be working.

Thanks Naomi, sorry you seem to be in the same boat as me. What do you do might I ask? Do you just try to push through? Think positively? Do what you can when you can? Have you found your new normal? In short, how do you deal with all of this. I've only been going through this for four years, but believe me, it's been the longest, hardest four years of my life. There are times where I can push through and there are times when I just feel like giving up and resigning myself to the fact that something is wrong, even if no one can tell me exactly what, and that I just need to learn to live with it. UGH! So frustrating!

Hey all, Hope you are as well as can be. I have a question that I'm sure has been asked on here before and might sound silly, but I'm going to ask it anyway. Besides, for some reason I cannot look up threads using the forums search. Anywho... What exactly is a flare to you? I know everyone is different and experiences different symptoms, but I'm not sure I understand what a flare really is. I pretty much feel crappy daily, it's only the degree of crappiness that changes. I basically feel like I have the flu, menopause and a hangover simultaneously, daily. I do have "episodes" where I have "panic" like symptoms, but those are few and far between. I think I could handle the symptoms if they weren't all happening at once. Thankfully, I am not bedridden although if given the choice I would probably stay in bed all day. There are days that I do have to stay in bed though, is that what is considered a "flare"? I still don't drive all that much, and never on my own anymore. I don't faint, I don't think I have OI, I don't have exercise intolerance, I do have heat intolerance at times, I basically just feel really bad most of the time. Have I just been in a flare for four years? Maybe I'm just a lazy complainer I'm considering going to the dr. again to begin the process of finding out exactly what is wrong with me, but I hate it when they ask questions like, "How do you feel?" or "Is there something specific that is bothering you?" or even, "What's the one symptom that bothers you the most?" I feel like the only response I have is "I just don't feel good/right." It's so hard to pinpoint one particular symptom because I feel so crappy daily. I have begun to chart how I feel and my symptoms along with my vitals daily in the hopes that it might help me and/or the dr. understand better what is going on, but everyday seems to be the same. I feel like just writing "ditto" on every day's recordings. Just wanted to know what you all have experienced. Thanks in advance. Be well, Bebe

So sorry Mydoggie! I too suffer from migraines. They seem to come about every 6-8 weeks and last for three days, peaking on the second day. I have been to a neuro, many years ago and he put me on Maxalt, but it didn't help "the headache". It totally got rid of regular headaches, but didn't even touch "the headache". Nothing I take even touches it. I've taken so many things over the years, sometimes prescribed and sometimes just pain meds that my husband has gotten for some reason or another (he fills the rx. for me, he doesn't ever touch pain meds). For about the last 5 years, I've taken nothing because nothing seems to help. Like I said, I've tried OTC meds and rx meds of every sort, nothing even touches it. All I do now is darken my room, lay in a fetal position with a heating pad over my head and right side of face. I have to admit, it doesn't really help all that much, but it's the only thing I can do. I have a family history of migraines: late mother, sister and brother all got/get them. My mother used to take Imatrex and my sister currently takes it, brother has taken Maxalt. Nothing helps me. I've even been to an ENT thinking maybe it is sinuses (most in my family suffer from this) and no go there either. Even after an endoscopy of my sinuses, CT scans and MRI. Nothing... I hope you find some answers soon and get some relief. Sorry I couldn't be of more help. Good thoughts going your way. Bebe

Good news Andy!! Not for the dx. mind you, but I know it must be such a relief knowing now, that's half the battle. Hoping that an increase in water and exercise does the trick for you and you can get back to a normal life!! Best of luck to you Bebe

Joann, So sorry you are still having such a terrible time. You are NOT crazy!!! I know exactly how you feel. I've been on Metoprolol for 2+ years @ 25mg. 3x/daily (and my dr. has told me that he has patients that are on 300mg/daily YIKES). It seems to have helped me, but as you well know, different meds affect people differently. As you know, my bp tends to spike too. Since you were feeling a bit better before your CC exams, it seems to me that it might be a reaction to the dye perhaps? So sorry you aren't getting anywhere with the dr.s either. Waiting seems to be one of the hardest parts in dealing with this. Hopefully, the tests will reveal something. I now know through all the reading I've been doing that it is so important to find out what type of POTS you have (if in fact you have POTS) I'm in the same boat. I only mention this because I've read that if you do have hyper POTS, bb's can cause issues. Basically, there are so many meds out there to help with symptoms, but it's important to know what they are dealing with so they don't give out the wrong meds. Always talk to your dr. about any symptoms you might be having, I know this can be so difficult as my second job of late is being on the phone countless hours with dr. offices and pharmacies. At this point, try to educate yourself as much as possible and try not to give up. Maybe from any information/education you can gleen, you can then take it to your dr. in the hopes that they will be compassionate enought to listen and help you find a treatment plan to get you back on your feet, or at the very least improve your quality of life. I'm with Hope, in dealing with the fear, I pray. Will be praying for you and that you get some answers soon. I'm always here for you my friend. Try to keep your chin up and hang in there. Hugs, Bebe P.S. I have daily chest discomfort/pain too. Unfortunately no one has ever found out why. I don't get the burning sensation you explain but my sternum feels bruised all the time and I get a bruised painful feeling under my arm (on torso) and it sometimes extends to my back. I've had a variety of suggestions from dr.s ranging from: "it has nothing to do with your heart" to "maybe it's the underwire in bra" (even though I only wear a bra if I leave the house which isn't often, sorry if tmi), to "you have a build up of cartilage in your ribs, if the pain gets too bad, we can give you a cortisone shot". Please don't give up! I will be praying for you

AmberK, So glad everything went so much better this time for you. I can tell by your post how relieved you are I know that a dx. of POTS isn't the greatest news in the world, but at least you now know exactly what is wrong and hopefully, you and your doctor's can come up with a plan to get you on the road to a better quality of life. So happy for you (Your experience that is, not your dx. ) Be well, Bebe

When doing a load of laundry and actually washing it, drying and folding it and you feel as though you've climed Mt. Everest, yet you haven't left the laundry room. When you have an old person's pill box and you're middle aged (or younger) When you have post it notes all over the house as reminders to do everything. When watching a movie over and over is no big deal because you can't remember what happened the first time you watched it! It's new every time When your husband asks, "Do you have any spoons left for me?" or "Don't use all your spoons today, please try to save some for me" Sadly, when people stop calling to ask you to join them for coffee, field trip or whatnot because they know you won't be joining them anyway When your children ask if they need to set up a sick bed on the couch for you. When you've hit your target heart rate for burning the maximum amount of calories by just getting out of bed.

I do think it's a great thing to get the info out there. Like abby, I would like to see these dr.s realize that there is so much more to POTS (Dyautonomia) than just an increase in hr upon standing, with or without bp decrease as well as the whole physiological/psychological issues. The dr.s that I have seen have been familiar with the term POTS, but that is typically where it ends. They don't seem to be aware that it can be a dibilitating disorder. I've gotten responses from, "Eat more salt, drink more water and go live a normal life", to "You might seriously consider seeing a psychologist." Of course I've also gotten the ever popular, "This isn't life-threatening, many people live perfectly normal lives with this disorder." Sometimes they just don't seem to "get it" and that is the frustrating part. Again, thanks so much for raising awareness

Sent my list! Thanks so much for all your hard work Naomi

Thanks Hope, me too

Thanks Joann! I wish the "like" button worked on here.

Thanks Dave

I'd have to check, but I think on my pamphlet that I get from my bb meds. it specifically says to avoid grapefruit.

Thank you Alex. Yes, she is a great dr., we've been seeing her since my daughter was 3 years old. I feel as though I'm in good hands. Thanks for all your support and encouragement, it means the world to me. Be well!

Thank you Mydoggie <3

BTW, I was surprised at the fact that they even took her bp lying down and then standing because of the symptoms my daughter had listed on the paper (the very paper I thought no dr. ever reads!) My own dr.s have never even done this with me. I really like this dr. and trust her, just by the sheer amount of time she spent with us, which was about 2 hours total, has got to say something! I might seem helpless at times, but I shall never be hopeless Trying my best to keep my chin up for my dear daughter's sake. Thanks for listening...

Well, we literally just got back from the cardio. Our appt. was at 5pm and we didn't get finished until 10pm! I am reeling from what the doctor told us. She said that my daughter still has the VSD and PFO. My daughter mentioned the symptoms she has been having and the dr. automatically told us she has Dysautonomia, although she called it something else. The dr. told her that it wasn't serious, that many times it runs in families (at that point I told the dr. that I had been dx. a few years ago) and that many times they see it in my daughter's age group. What came next is what really scared me, although I'm trying to think positively. She mentioned some kind of pulmonary something or other (I was in a fog at this point). They were scanning my daughter and they were saying that instead of the blood going from the left chamber into the right, it was at times going the opposite way and they couldn't get a reading. She said they couldn't see it very well on the scan. She set my daughter up with a holter monitor (24 hour) and when we get back in town she is going to put her on a 30 day event monitor. The dr. told us that what she was seeing was "very strange" and that she was going to take her findings to a cardiac conference next week. She wants us to take my daughter to the Children's Hospital here and have them do scans and a possible MRI. If they still can't see why this is happening, they will have to do some kind of esophageal (sp?) scope to look at her heart from above. She did try to calm us by saying that my daughter doesn't show the normal signs for this pulmonary thing, but she wants to be absolutely sure. What she thinks is happening is that a muscle bundle down by the VSD is clogging up the hole and causing the blood to go back the other way (the way it is not supposed to go). Needless to say, my daughter was in tears and is worried. Please pray that it is just the muscle bundle thing. I'm probably not making too much sense, I can't remember half of what the dr. said. Luckily my husband was with us. Thanks, Be well, Bebe

Thanks a bunch Alex! Will look into all the above Be well!

There is also an article in Dinet's newsletter: http://dinet.org/2013Winter.pdf Here are some articles that a program through my health insurance sent me: http://www.jhoonline.org/content/4/1/10 , http://www.ncbi.nlm.nih.gov/pubmed/21035176 , http://www.mastocytosis.ca/symptoms.htm , http://www.uptodate.com/contents/mast-cell-activation-disorders (not sure if this one is stricly for dr.s or if laypersons can read it too) I haven't had a chance to read through all of the above information as of yet. Sometimes it's hard to get through all the medical jargon. Hoping you find out some answers. I too suspect I might have MCAS and will hopefully get some answers too. I'll share anything I find out. Be well, Bebe

Thanks for your responses!! By the Beuller reference...I now know your roundabout age !! I must say, the 80's rocked!! She started her cycle around the age of 13 or so, she is now 16 (she'd kill me if she knew I was discussing this!). During the last three years she has started having symptoms. Although, she is the type to keep it to herself, lest she miss out on any fun activities with friends! However, recently she started seeing marked frequency in symptoms. I took her to her pediatrician this past fall and they did and EKG in office that turned out fine, although we all know that we can experience things during different times, like a car that goes in for the incessant ticking noise that invariably stops when the car is taken in. It was about time for her regular cardio visit at the time, although they have called twice to cancel. So...we've been trying to get in since Oct. of last year. Mind you, she really didn't start experiencing marked frequency in symptoms until just recently. Alex, we only allow carbonated drinks on the weekend, so she averages about 2-3 per week, although I don't know what she does when she is not in my ever-nagging presence. We've discussed with her the need for her to keep hydrated and I'm forever sending off for the weekend with friends with water and gatorade in her bag. She is completely aware of my situation and of course, dosen't want "what mommy" has. She hit puberty, I'd say 3-4 years ago and has had regular cycles since then (again with the nagging mom). She is now conscious of her heart rate and checks it, but I don't want her to become a worrier (like me) although she does seem to take it in stride. I'm just worried because the last two episodes, she has been in tears asking me to call her father to see if he thinks we should take her to the ER. We try to comfort her and have her try to relax and drink gatorade and she seems to feel better after a while. Judging from my experiences with the ER, at times they might do more harm than good, especially if the dr.s aren't well versed in POTS. Azmusiclover, we will definately let her cardio know of the symptoms, but I think I'll keep my condition under wraps unless the appt. starts going south, then I will "pounce". I just so hope that she doesn't have dysautonomia...she so hopes that she doesn't (since she's seen the brunt of it with me for the past four years). She's a trooper though. Hoping that all goes well at the appt. tomorrow. Will keep you all up to date. Thanks so much for your insight and encouragement, it means the world to me Be well, Bebe

LOL! Hope!! I'm just not sure if I should tell dr. of my dx. because I kinda want her to figure it out on her own, if that is the case. If I see the appt. going south I will surely step in and ask the necessary questions and request the necessary tests. We've been waiting for this appt. since last fall. Been cancelled twice, but so far, everything is on track for tomorrow. Hopefully, we'll get some answers. If anything I want them to do an event monitor at the very least. I'll keep you posted! Positive thoughts

Bueller...Bueller...

Hey all, Hope all of you are as symptom free as possible today. I'll try to make this short (as if that is possible for me ) I have a teenage daughter who was dx. with VSD and a PFO since she was a child (VSD when she was an infant and PFO when she was about 5). We've been seeing a cardio over the last ten years for sonograms and whatnot. We used to go every 2 years for a follow up and the last time we were in we were told we could extend it to every three years. We currently have an appt tomorrow. My daughter as of late has been experiencing tachycardia and general malaise. It really started around the time of puberty (when she was about 13), but has since increased in frequency. For example she will be in the shower and when she is done, she makes a beeline for her bed and calls me in to tell me she doesn't feel well, her heart is racing and she feels like she is going to faint. She has also experienced tingling in her hands and arms. The way she describes her heart at varying times is: fluttering, fast heart rate, heart feeling like it is beating slow and really hard (pounding feeling). She was even out with friends fishing this weekend and she felt her heart racing, she took her pulse and it was 120. She told me that she was alternating between sitting and standing, she was in the shade for the most part and was drinking. I even did a poor man's TTT on her where her hr increased from 70's to 114 within three minutes of standing. Obviously something is going on. Here's where I need the advice. We are going in for her cardio appt. tomorrow and of course we will be bringing this up with her dr. My question is: Do I tell the dr. right off that I have been dx. with "probably POTS" and I experience the same things or do I just tell the dr. what my daughter has been experiencing and let her determine what is going on? I hate the feeling that my daughter might have this dreaded illness too. I don't know if this dr. has any knowledge about POTS, I can only assume that she would since she is a pediatric cardiologist. What to do...what to do... Any advice would be appreciated. Thanks in advance. Be well, Bebe

I know that we are not allowed to give medical advice, but I would surely love some direction. Any input would be appreciated. I plan on going into the dr. soon and I want to get all information on testing that I can get my hands on. When dx. in 2009 the EP told me that I "probably have POTS". That's where he left it. He wouldn't/couldn't treat me and couldn't refer me to someone that could. He never told me there were different types of POTS nor suggested any other testing. He told me to eat more salt and drink more water. Never put me on medication. Went in for a follow up and I explained all the symptoms I was having and he told me that he didn't know why I was experiencing all of them and that people live normal lives all the time with POTS. Also, saw another EP (a supposed specialist in POTS) who told me that I have a mild case because I don't faint. I proceeded to tell him all my symptoms to which he responded, "You shouldn't be feeling this way, it has nothing to do with POTS." Mind you, the symptoms I was exhibiting came directly from Dinet.org information packet that the original EP had given me at the hospital after my TTT. He suggested I see someone closer to home and to look into seeing a Psychologist. Now, four years later I am questioning even if I, in fact, have POTS (although did test positive in a TTT back in 2009). I have finally gotten over (mostly) my dissatisfaction with doctors and am willing to start from square one again. I am currently being treated by a GP that also treats other POTS patients. I do like him and I feel like he listens and tries to understand. He is treating me with BB's and Xanax which seem to work most of the time, but I still have issues that wax and wane. I do feel like I have improved over the last year, but not sure if it is due to meds, my resignation to feeling crappy all the time and learning to deal with it, or if it's a combination. I would like to know whether I have any other issues like possible autoimmune issues. From what I've learned in my reading, I suspect Hyper POTS, possible MCAS, possible Grave's, possible Meneires, possible pheo tumor thing, and probably more if I really think about it. I want to find out what type of testing I might need to get done so I can suggest them to my dr. and hope that he doesn't look at me like a crazy person. I do understand that there are so many overlapping symptoms pertaining to various syndromes. I'm am just so confused, so ready to get a difinitive dx. and so so ready to get better treatment, if that is possible. I would like to know what specific types of tests I can suggest to my dr. Thanks in advance.