bebe127

Thanks for the replies! My daughter takes hers with food in the am. She has not complained about it upsetting her stomach. She takes it in liquid form which the dr. suggested as it is gentler on the system. She has just noticed that she is hungry all the time which is strange for her. Like I said, she is 5'9 and stick skinny. She has been eating like there's no tomorrow. She doesn't eat all the time mind you, but during meals, she has seconds and sometimes thirds. She says that she thinks it's the iron that makes her hungry as that is the only thing she has changed in recent months besides starting on a mult vitamin. Thanks again.

Hey all, Hope you are all having as symptom free day as possible. Question: Can taking an iron supplement cause an increased appetite? I'm asking because my teen daughter had been feeling really yucky over the last couple of months. Took her to dr. and found out she was anemic. The dr. put her on 1tsp Irofol per day. He then told her to take 2tsp. but we've kept it at one because she is also on a multi vitamin with iron and I don't want her to take too much. She had not been taking it regularly (I can only lead a horse to water) and was still not feeling well (go figure?). I have now been on her case to take it each am. She has told me that she is so hungry all the time and she has been eating quite a lot it seems. Not too big of a deal for her in that she is 5'9" and stick skinny. Just wondering if this is common with iron supplements. Thanks for any input, Bebe

Davecom, I think many get better. I'm so grateful for those that have gotten better and chose to stick around to encourage others (Momtogiuliana to name one of many). I agree with the statements above. Things do get better. I'm going on four years and things have gotten better for me. I don't know if it is the meds or what, but I do believe that once a person comes to terms with having a chronic illness (which can be very hard, but can be done) and begin to read their bodies and know their limits, things do change. I truly believe that I had to go through a grieving period (sometimes I'm still in it), and had to tell myself...ok, this is me now, I'd better get used to it, and make the best of it, it really helped me out. When this all started for me, I didn't drive, rarely went anywhere, was in bed quite a lot and frustrated with dr.s. that didn't know about my illness or how to treat it. Now, almost four years later, I am driving, going out more and doing many more things. This is not to say that I "feel" well all the time, and I do force myself to get out more, but in the end, I'm happier for it, even if I have to pay for it later. Just the other day, I took my daught for a hair appt. and we went out shopping afterward. Four years ago, that wasn't even in the cards for me. Remember, this is a process and it can be slow going for a while. It can totally stink at times (many times unfortunately). It takes time. Sounds like you're in the hard stages right now: finding dr.s that can help, the right meds, etc. Chin up though because things do get better. I, for one would hope that if I ever fully or near-fully recover, I will continue to stay on this forum to encourage others. Be well and good luck in all you do Bebe

Welcome Margiebee! So sorry you are having to deal with this. It can be really frustrating, but I am encouraged for you in that you have found a dr. that seems to be on the right track in being able to help you. That in and of itself is so much more than many of us have. Chin up!! Hope you find some answers soon and a medicinal/or other protocol that can help you with your symptoms. You are certainly not alone and you've come to the right place. This forum has been so helpful to me in gaining information, education, commiseration, encouragement and so much more. Best wishes to you!! Be well Bebe

Hoping all goes well. Gentle hugs for you and your mom!

Thanks Hope I've never been dx but I get frequent bouts of dizzyness/vertigo that only last seconds, plus I feel like I have some hearing loss. Oh well, just one more thing to mention to the dr. at my next visit...

Hope everyone is having as symptom free day as possible. Just wondering if anyone here has Meniere's Disease/Syndrome? I've always had tinnitus in both ears for as long as I can remember, however since being dx with POTS and/or being on meds. my tinnitus is worse, especially at night. It is so hard to fall asleep with this constant ringing. I know that at night it can seem to get worse because all is quiet in the house, however the ringing really seems to be much louder in the evenings. I've also experienced, what I consider to be some hearing loss although I've never been tested before. All I know is when I sit down to watch a movie with the family, the kids always shout out, "did anyone remember to put on the closed caption for the hearing impaired!?" Yes, I now have to put on subtitles anytime I watch the telly or my Nook, if not everyone gets annoyed with my constant, "Huh?" "What did she say?" "Rewind that, I didn't catch what they said." I've even taken to reading lips at times (which can be quite awkward depending on with whom I'm speaking) because it is hard to hear what people are saying to me, especially if they are not looking right at me. I have to constantly tell my kids when they are talking to me that they need to look directly at me. Of course, they think it is hilarious when they look at me and cover their lips while talking so that I can't read their lips! Kids!! Can't live with 'em, can't live without 'em I've briefly read up on Meniere's on Mayo.com and they talk about having episodes of vertigo for 20 minutes or more. A number of years ago, I had vertigo really bad. Even if I lay on the floor, I would feel as though I was going to fall off, it was terrible. I was put on Antivert for a bit and it seemed to go away. I have never had it that bad since. Even now though, I get episodes of dizzyness, the only way I can describe it is that my head feels like a compass, you know the type where the ball floats around, if that makes any sense. I experience this daily, but it only lasts seconds. It's kina like, "whoa!" and then it goes away. I also have pressure in my right ear whenever I get a migraine, but it's not there all the time. And I always have crust in my ear, like it drains at night or something. Years ago, the dr. suspected an ear infection or virus. I also went to a Neuro and had an MRI done. He said everything looked fine. I've also experienced migraine type headaches for over a decade. This tinnitus is enough to make a sane person crazy, as if I don't already have enough with everything else. Just wondering if this sounds like Meniere's to anyone and if so, what do I need to ask/tell my dr. What types of tests are done or have any of you had testing for this? Thanks in advance Bebe

Just wanted to share this with all that suffer with chronic illness. This is written by a woman named Michelle, she is a former Neurophychologist and current chronic illness sufferer as well as a wonderful writer and chronic illness advocate. Check out her blog if you haven't already at: http://bobisdysautonomia.blogspot.com/ Tuesday, 16 April 2013 Dear Doctors. Dear Doctors, A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting. What is you first response? I'd hope that you'd investigate. I'd hope that you would take it seriously. I'd hope that you'd reassure your patient that you believe them, and will do your best to help them. But sadly, this response seems to be the exception, and not the rule. "You're just anxious." "You're just depressed." "You're too young for [insert illness of choice]." "You just need to get out more." "You're wasting our time." This is what far too many patients encounter. Do you know that your response in that moment can influence that patient's relationship with the medical system for years to come? Do you know that your response can make or break that person's sense of self? Do you know we come to you because we are scared? Do you know we come to you because we trust that you can help us? Do you know that you can crush that trust with an uncaring word or flippant attitude? Do you know that rare, doesn't mean non-existent? Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals? Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads? Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time? Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac? Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule? Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you? Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard? Do you know that we will spend years trying to overcome the damage you created in that one exchange? Do you realise the power you have? We come to you scared. We come to you with trust. We come to you with hope. We want to believe. We want to feel better. You may not understand our condition. You may be frustrated by a lack of clear results. You may be overworked and tired. But do not forget your power. Do not forget that you promised to first do no harm. Do not forget you are dealing with a person, not a bed number. Do not forget that in that moment we are vulnerable. A kind word. Genuine concern. A simple admission that you don't know. Will build trust. Will build hope. See us as people. See that there are real world, long-term consequences to how you interact with those who seek your care. You have the power to make or break a person's entire experience with the medical system. Remember that before you speak with your next patient and use your power well. Michelle (I've woken up to a bunch of emails asking if people can print this post out and give to their local doctors, hospitals, medical schools etc. Rather than reply to all and because I am time and energy poor at the moment, the answer is YES feel free to copy and share. All I ask is that there is a link back to the blog URL and authorship noted.)

Looneymom, What type of coconut oil do you use?? So far we've nutribulleted every morning (except today) and the best I've come up with that my kids say is "not too bad" is: spinich, organic frozen berries, activia yogurt, honey and coconut milk. I haven't tried adding any seeds, protien powder or anything because I have to find out if they interact with the meds I'm on. Thus far, best way to get fruits and veg into all of us even if it is only one time a day Of course we have veg with every dinner meal.

Just wanted to add to the "beer" comment and further explain that I don't condone imbibing alcholic bevs, but I have found for myself (and everyone reacts differently) a few beers might quite possibly be the only thing that brings me to some semblance of my normal pre-POTS self (even hubby sees a distinct difference). Just a thought. As always, check with your health care provider before making any changes.

BTW, Alex, thanks, gonna check it out

Issie, You sound just like me!! More on the hyper side, although never been diagnosed as hyper, in fact, never been diagnosed as anything but "probably POTS" for that matter. "(I'm one of those that my bp swings from high to not so high. But, I don't usually get real low, except for sometimes with lying down)" And...I HATE BEETS!! Be well, Bebe

Where there are valleys, there are always peaks. As we look forward to the next peak, maybe even one small step at a time, if we keep on keeping on we will reach it! Here's to hoping we can all make it to the next peak Chins up everyone!! Be well, Bebe

Thanks for the suggestion cupcakemomma

This am tried spinich, organic frozen berries, banana and water. Came out a bit thin and my kids said it didn't taste like much. Will have to try different variations to see what we like best. I'm in the experimental phase now. Tomorrow will try something similar but add coconut milk instead and increase the other ingredients to make it more smoothie -like instead of watery. We'll see. Here's to hoping!!

Pumpkin, I too saw a therapist for a short time and she as well focused on anxiety. I didn't see here for long at all. One of the good things that came out of it was her having me get the book: http://www.amazon.com/Anxiety-Phobia-Workbook-Fourth-Edition/dp/1572244135/ref=sr_1_2?ie=UTF8&qid=1365420709&sr=8-2&keywords=the+anxiety+and+phobia+workbook Even though I don't have an anxiety disorder or phobias, believe it or not, it was still quite helpful to me. I gives lots of information and also gives pointers on how to deal with anxiety when it does occur. While I don't have an anxiety disorder and I believe that my anxiety comes from my whacked out ANS, I think that the strategies are helpful either way. I think I would like to try therapy again, but I would need to find one that helps one deal with chronic illness, not the symptoms per se. I'm sure there's got to be someone out there that does that specifically, the problem is finding the right person. I get tired too of hearing people say that I need "perspective". It's like, enough already, I just want someone to tell me how to deal with the day to day things concerning my illness or just someone that understands my situation (perhaps gone through/going through having a chronic illness) that can just listen with a few mhhm's. Living with chronic illness and all its ups and downs can really wreak havoc on us and our families. I really hope you find some answers. Best of luck to you. Bebe

Ash, Sorry you are having to deal with doctors that just aren't informed on many levels. I don't know anyhting about Wellbutrin, but one of my dr.s put me on Celexa (which I couldn't tolerate), but specifically stated that is was not for depression and these types of medications are now being used to treat many other things besides depression. I found the following on the Dinet.org site under the "what helps" section: Wellbutrin (Bupropion) is a central nervous system stimulant. It is a dopamine agonist and also a weak blocker of the neuronal uptake of serotonin and norepinephrine. Wellbutrin is not habit forming and works immediately. Wellbutrin can sometimes be used to combat the fatigue that plagues POTS patients. (via Dinet.org). Sorry I couldn't be of more help, but I'm sure that there are many on here that can give better information as well as many that might have experienced exactly what you're going through. I think it is such a shame that we need to spend precious time informing doctors when it really should be the other way around. Such is life with POTS Hope you get some answers soon.

Ditto to the above responses! Pumpkin, I can so sympathize with you, it's like you climbed into my head and wrote everything that I've been thinking lately. I too have vivid dreams. I'm not going to go all into all of my experiences, suffice it to say that I know exactly how you feel. I've put this on a thread before, there is a book that has been very helpful to me; it is http://www.amazon.com/Coping-Chronic-Illness-Migraines-Fibromyalgia/dp/0736927069/ref=sr_1_1?s=books&ie=UTF8&qid=1365347727&sr=1-1&keywords=coping+with+chronic+illness They author's explain so much about the process of grief people with chronic illness go through. It is also a sort of workbook as the authors have many types of activities that we can do on our own to promote awareness of our individual situations and where we stand in this process. It has helped me tremendously. This is not to say that I don't go through daily bouts of depression and or feelings of despair, guilt and the like. It is process. Where there are valleys, there are always peaks. We need to try to focus on our next peak and do what we can to reach it, even if it is one small step at a time. Like Machiavelli says in the book The Prince, "Let him (prince) act like the clever archers who, designing to hit the mark which yet appears too far distant, and knowing the limits to which the strength of their bow attains, take aim much higher than the mark, not to reach by their strength or arrow to so great a height, but to be able with the aid of so high an aim to hit the mark they wish to reach." May your days be bright and your aim high Bebe

azmusiclover, Good on you. Not only should you be proud of yourself, but I'm sure your son more than enjoyed having his mother present (and upright!). Being a part of our children's lives is so important and so many times, it seems as we cannot, but YOU DID IT!! So encouraging!! Well done!!

Lynnie, So sorry you are feeling this way and I don't want to say trite words, but you are certainly not alone! I surely hope that you get some answers soon. Hang in there!! Be well, Bebe

Love your blog Carrie!!

Just got my NutriBullet today!! Can't wait to try it out

Talked with the hubs this afternoon and our next plan of action is to make a dual appt. for our physicals. When the dr. asks why we didn't get the labwork done ahead of time as he suggested, that will open the door for us to tell him what's been going on in his office. This way too, we can make two appt.s instead of four. My husband is so irritated! I am also going to print out the negative reviews I found online about his staff and hubs says that he has no problem giving them over to the dr. so that he has a glimpse of what people out there really think of his office staff. At this point, I'm so irritated that I don't even care anymore if I have to find a new dr. I have enough meds to carry me through.

"I also try to keep in mind that they don't really need soccer. They don't really need parties or play dates. Most kids today are too busy- and if my kids aren't running around as much as others being super busy it will be ok. What they really need is a mom and/or dad who love them, are interested in their interests and talks with them." Kellysavedbygrace, So with you on this one. As long as they have parents that are present and love them, that makes all the difference in the world.

Hope, I'm pretty sure you sneaked over here at some point and typed this from my computer! I can so relate. I have two children dd (16) and ds (15) and it has been tremendously hard on them. I homeschool them and always have. In the past, before I got sick, we were involved in everything: park days, music lessons, gymnastics, church activities, PE classes, co-op, field trips and on and on, you get the picture. Since being ill, my life has pretty much been at a stand still and my poor kids suffer from cabin fever much of the time. I don't drive often and when I do, it is only when necessary. In fact, I am actually out of the house 4 out of the 5 school days taking my daughter to college courses, volunteering, and co-op. I feel worse for my son as we live in a rural area and he seldom has the opportunity to see friends and be a part of extra curricular activities other than our co-op. Unfortunately many times he's not invited to things because he usually can't go because I can't take him and I don't really have many friends that are willing to take him along since I can't reciprocate. My children have a different set of friends so they don't often do things together as a group. DD usually is quite busy with her friends, especially on the weekend while my poor DS is stuck home with a sick mom. I so wish things were different. My husband works as well (thank the Lord) and he does try to find time to spend with the kids either together or separately and that is helpful at times, but it's not like it's an every weekend type of deal. My husband has a very demanding job and he's on-call 27/7/365, so when he has time off, he'd rather stay home and veg, but thankfully he is gracious enough to do some things with the kids. Most of the time when he is off, he's busy taking care of me Sorry I don't have any advice, I can only commiserate at this point.