bkweavers

I'm going to try what the others have suggested for myself since I too, suffer from many yeast infections. Another question for you - are you on birth control? I'm on birth control in order to control my migraines and the severity. The bad thing about that is that my doctor said birth control pills can throw off the ph balance down there and thus, more infections. I've tried lots of things and have found that staying away from sugar and eating lots of yogurt has helped. I'm also going to try caprycilic acid as I'm ready to try more to keep these infections away! They really are miserable. Is this really a POTS related thing or just something that certain females get? Some friends and family I know never have had one and others are like me and suffer regularly with them. You can bet that if men suffered like we do, there would be a lot more alternative medicines/treatments out there on the market! Brenda

I don't have POTS but you sure sound a lot like me when it comes to your headaches. Mine also originate in my neck and I get therapeutic massages as well. I could also use something that lasts longer than a massage. I'm on day 8 of nonstop migraines and I'm ready to try Botox! I also heard that it lasts generally 3 months for most people. Maybe you should consult with your POTS doctor and ask him/her their opinion about your chemical sensitivities and if Botox would be a good alternative for you. Questions about acupuncture-do you go primarily for your headaches or other symptoms? I've considered taking my daughter to an acupuncturist but didn't know if it would help her dizziness or not. How often do you go? Thanks, Brenda

Just thought of two more things. My doctor always says to dry your vaginal area well and to wear cotton underwear. It breathes and keeps you from sweating so the yeast doesn't have a chance to grow. Brenda

I'm a little confused because in order for yeast to grow, it needs moisture, not dryness. I feel for you getting these lovely infections because I get them frequently. My doctor thinks that my birth control pills are adding to my problem. I don't want to go off my birth control, however, because I get so many migraines and he thinks the birth control pills are keeping me from having worse migraines. So, do I have pain or the itching! Sorry, maybe too graphic!! I do know that diet can help. I eat lots of yogurt and try to stay away from eating too much cheese, peanut butter, and sugar. Yeast loves sugar and grows quickly from it. Also, I've noticed that the over-the-counter creams don't work to get rid of the infection. I need Diflucan, a prescription medication to get rid of it for good. The creams just seem to mask it. Hope some of this helps. Brenda

Everything mentioned so far was great and I just wanted to add that my daughter was diagnosed at age 10 and her brain fog was terrible for the first year and a half. I know there may be more going on with your situation and I would definitely get it checked out, but brain fog and forgetfulness are definitely a part of POTS. My daughter would take twice as long on an assignment and still get half of it wrong. She has been in special ed since the start of her POTS and has been able to receive a lot of help. They cut her assignments in half at the beginning and gave her extra help on tests. She missed a lot of school the first year but has gradually been able to be at school for longer amounts of time. Currently, her brain fog is very much improved. Since a year ago, she's been on the honor roll twice and is able to do her homework with none of my assistance. I'm hoping that the same will happen for your daughter. I know how frustrating it can be for your child and for you to watch her struggle. I pray that you'll be able to find ways to help her succeed and to enjoy reading. Brenda

Boy, did you hit a nerve with me! I can't tell you how many times people have said to me, "Well, at least your daughter doesn't have cancer!" I finally said to a neighbor,"that that doesn't make my daughter's illness any easier." I wish I would have said a lot more and the next time someone says that to me, I will be prepared. I guess what hurts the most about people saying things like this is that when it is someone close to us, they've seen what's been going on. My neighbor has been around my daughter constantly over the last 34 months and has seen her struggle. I'm still wondering if I should confront her and tell her how much that statement hurt because my daughter is very debilitated and for her to brush it off so lightly, is so unthinking. And this woman is a nurse! The thing I find ironic in all of this is that we currently have 2 little children in my church with leukemia. I've talked at length with both parents and we have so much in common. We talked about the stress on our marriages, our other children, finances etc. and many things are the same. One father even said to me that when his child was diagnosed, he thought of us and how he could now relate to what we had been going through. I guess the bottom line is that unless you've been thru some rough times, you just don't understand what it is like to deal with illness. I never say to people that I understand what they're going thru unless it's the exact thing I've experienced. I also have more compassion for others. I wish our society would as a whole, add compassion and understanding and not be so quick to judge. We would all be much better off. Oh, and I pray a lot too. For God to take away some of the anger, to give me patience, and for people to be more understanding. Brenda

My daughter gets up around 9am to go to school by 9:45am. She's there until 2:30pm. She never naps and goes to bed around 10pm but doesn't fall asleep until 12:00 unless her sleep med works. Her entire day is spent reclining, both at home and at school. She is dizzy anytime she sits up, stands, or walks. She hasn't done any of those by herself in 26 months. We're working on trying to gradually sit up by increasing the time and angle but it is slow going! We've been hoping a medication would take some of the dizziness away, but nothing has worked so far. Her dizziness has always been her worst symptom. If her dizziness would decrease, Liz could do a lot more because she is tolerating going to youth group at church and taking an extra class at school on 2 days a week. She is better in so many other ways. Brenda

My daughter also gets lots of stares when she is in her reclining wheelchair. It seems the older the person, the longer they stare! My daughter doesn't get bothered by little kids staring or when people come right out and ask her questions. I figure it is one more person who knows about POTS. I'm so sorry that you seemed to get the worst of the human race. We've had some rude people but we've also had people who went out of there way for my daughter. We went out to eat this summer at a restaurant for the first time in over 2 years. Liz wasn't in a wheelchair but I went ahead and explained to the hostess that we would need a booth for her to lay down in and could it be close to the door so she didn't have to walk too far. Right away, they found the perfect place for us and many of the waiters and waitresses made a point of talking to her during our time there. When we were done eating, the manager made a point of asking us if we would like to use the emergency exit because it was right by our booth. She couldn't have been more accommodating and nice. It brought tears to my eyes. I guess the bottom line is your going to get rude people sometimes but know that there are people out there who do care. I'm very glad you got to spend time with your sister and I hope you get to have more good times with her and other experiences with a wheelchair. Brenda

My daughter also has had times when she was very dizzy when lying down. She was diagnosed at age 10 and between 11 and 12, she would get episoded 2-3 times a month where she was so dizzy, she could hardly move! She would sometimes spend her days clinging to the bed or sofa. This would usually go on for 3-5 days and then would go away. At least, the bad dizziness would go away. She is still dizzy every time she sits, stand, or walks and she hasn't done any of those on her own for any significant amount of time for over 2 years! Happily,these episodes have now been fewer and farther between in the last year. Tell that doctor that he's wrong and that there are other people who have experienced this. I hope you find something that helps you and/or I pray that this constant dizziness will improve and go away. Brenda

Thanks to all of you for your input and especially to MomtoGiuliana for the piece by the doctor from Children's in Philly. I listened to the interview with him on NPR as well and it really put aside many of my fears for my daughter getting the shot. I'm almost convinced now that once it comes available, I will have her get it. I think back to how sick she was last March just from a bad stomach virus that was going around and this could be much worse for her. I may even get it myself. I teach preschool and I've been coughed on or sneezed on more times than you can imagine! I've gotten influenza twice and both times I was down for 10-14 days and I'm a healthy person with no underlying conditions. Thanks again, Brenda

My daughter has been on Xanax for over a year and a half. It was given to her because of her headaches. For more than 10 months, my poor daughter went day after day with headaches and since she was only 11 at the time, the only thing I could give her was ibuprofen, which only dulled the pain. She went on .5mg of Xanax and her headaches began to go away! Now, I can't remember the last time she had a headache, even with menstrual cycles. I asked Dr. Grubb recently about the idea of Xanax being addictive. He said that taking it responsibly under a doctor's supervision is fine. He likened it to drinking wine. Have a glass or two with dinner each night is fine. Have a bottle of wine or two every night and you're in trouble! There are people that have been on these drugs for years and come off of them fine. What is the alternative for my daughter? She is already dealing with plenty of other symptoms and it's nice that we have found a drug that has helped to at least take away one of her symptoms. Brenda

On my daughter's last visit in July to Dr. Grubb's, he recommended she try Coq10 200-400mg per day. He said new research out there says it helps with muscle weakness too. He said many body builders are trying it now instead of steroids! He didn't say anything about drug interactions and Liz is on a beta blocker, Mestinon, and Alprazolam. I would still check with your doctor just in case. So far, not sure if it's really helping my daughter but I had only been giving her 200mg and so I'm going to increase it to 400mg. Brenda

Ramakentesh, Do you take licorice root specifically because it helps your dizziness? My daughter has tried so many different meds for dizziness and nothing has helped yet. (She's had POTS for 2 and 1/2 years.) It would be nice if that worked for her so she can work on reconditioning her body more often. Have you taken it long term and do you take it every day or only when you feel you need it? Brenda

My teenage daughter is the one with POTS and we try our best to keep her feeling as "normal" as possible. We have a pool of our own so we try to have lots of people over in the summer. We go camping a lot because it's really the only thing we can do as a family together. We have a great neighborhood that gets together for barbecues or just impromptu campfires. We bought a Wii and a large television for playing and watching movies in the winter when there isn't as much to do for her. We have sleepovers at our house as much as possible since she hasn't been invited to other girl's houses very much. Last of all, we have all of our family around so we get together with them as well. When there are events that she can't go to, we take turns bringing our younger daughter to those events so she doesn't miss out on everything. It's not the life we had before POTS, but we're doing the best we can to keep our family close and having some fun. Brenda

Serena, I know you heard what we've done with Liz but is he still going full-time? Having Liz start later in the day and allowing her to sleep longer really helped. I think I may have told you this before but he may need to go into special ed so more accomodations can be done for him or maybe just the later start to the day would help a lot. He could take homebound classes too if he misses them in the morning. As for that teacher, I wish to God that I lived closer to you. I would come to the meeting as well and tell her all about our daughter and the **** we've been thru with her. For some reason, she refuses to believe your son is really sick and I don't know what it's going to take to get her to stop acting this way. It really makes me mad!! It sounds like something drastic has to be done for all of your sakes. I'll be praying for the meeting that things will get figured out. Take care of yourself too! Brenda

Julie, So sorry to hear that especially since school just started. My daughter Liz is always dizzy when she sits or stands but she has had times whenshe got dizzy even when lying down. In fact, sometimes the dizziness is so bad that she can hardly move. Sometimes it's due to doing too much, not getting enough sleep, or her menstrual cycle. Obviously, that isn't a factor with your son but maybe the others? Or it could be the Clonidine since going off some meds can have bad symptoms. I hope you figure it out. Isn't POTS wonderful!?! Just when you think that you're on easy street, that's when it hits again. I know I've had many times where there just didn't seem to be any explanation at all as to why Liz was feeling worse and I've talked to other parents who said the same thing. Dr. Grubb told us that puberty and all those hormones makes for a roller coaster affect. I hope your son feels better and can get back to feeling like he was. Prayers for both of you as I know what it's like to watch your kid suffer and you can't do a thing about it! Brenda

I'm sorry to disagree with some of you but migraines do not just present on one side of the head, although that's how mine do most of the time. My neurologist said you can have them present all over your head as well as in your temples. Because I do not know much about your other health issues going on, I'm just guessing that you may be getting migraines. Have you ever tried migraine meds? Tylenol hasn't ever worked for my migraines since it isn't a drug that works on the blood vessels in your brain. The only way I can get rid of a migraine is to take Imitrex and maybe some naproxen sodium along with it. I also feel dopey when the pain gets bad and I have a difficult time concentrating. I also get the throbbing pulse when it feels like your brain is keeping time with some rock song! Just an opinion from someone who knows what migraines feel like. I hope and pray you find some relief no matter what is causing this. Brenda

Wow! You've really given me a lot to think about and I'm going to research this a lot more before I have my Potsy daughter get either shot. I was so ready after watching something on the news about the swine flu and now, I'm not so sure what to do! My daughter, Liz has actually never had the regular flu shot and has been very healthy so I don't really think of her as having a compromised immune system. I guess I'll ask her pediatrician and see what he thinks and make my decision then. Also, you can get a mild case of H1N1. My next door neighbor and her baby got a mild case of it last spring. I do think a lot of this is media hype. We live in a world in which we are innundated with information 24/7. I think it's good to take precautions and use common sense, like hand washing. My daughter's problem is that she can't stand long enough at school to wash her hands so she uses hand santizer. I guess I'll be sending her to school next week with a big bottle of that! Thanks for making me think hard about this, Brenda

My daughter who has POTS was born at 26 weeks or 3 and a half months early. We have asked every doctor if they think there was a link between the two things and they didn't think so but couldn't tell us for sure. Besides, when she was born early, 2 of our doctors had 2 separate opinions on why she was born early. My OB thought it was my cervix and the neonatologist thought it was because my daughter was born with congenital hypothyroidism which aids in brain devopment. She thought our daughter would have been a stillborn if she wouldn't have been born at 26 weeks! I'm more prone to think that her make-up and her hypothyroidism are what brought on the POTS, not the prematurity. All I know is that having her in the hospital as a baby for 3 and a half months was a walk in the park compared to dealing with POTS and she doesn't remember anything from that time as well! Brenda

Oh, Julie! I feel your pain having suffered from migraines for the last 8 years. Funny thing is is that I've also been having migraines every day for at least a week straight. I'm not sure where you live but I've found that barometric pressure changes can give me headaches. Last November and December when we had one snowstorm after another, I thought my head was never going to stop! Have you tried other migraine meds? I tried quite a few before I found Imitrex helped. However, I also sometimes cannot get rid of the pain but I only take 50mg of Imitrex and not the 100mg pills. The 100 ones make me also feel like I'm not all there and like I want to just go to sleep instantly, so maybe that's something you could try. Relpax is another good migraine med as well but I think it's a little more expensive. I know you don't want to take Tylenol 3 again but if it's going to break the cycle of your headaches, it may be worth it. My mother has a migraine pretty much every day of her life and has been to every doctor and hospital possible and she takes Tylenol 3 for the pain. She wouldn't be functioning without it. You may not have to take it very long to see some results. Just a few suggestions from someone who knows what it's like to try to function with a headache. It's not fun!! I'll say a prayer for you and for your pain to go away. Brenda

Dear Elfie, First of all, welcome to the forum! You've come to the right place with people who understand why you need a place to sit to cook and why you want a good shower that you can comfortably sit in without passing out! All of those things seem reasonable and correct to me who lives with someone with POTS. I want you to read your last message. There were so many negative aspects about this relationship that you pointed out. Believe me, if a man REALLY loves and cares about you, he doesn't have the attitude of my way or the highway. A healthy relationship has that. You shouldn't have to walk on eggshells around a person who loves you. Frankly, it sounds very stressful to me for you to be living like that. I think you really know what you should do but are having a hard time breaking it off. Obviously, I'm only going by what you wrote here and only you can make the decision that is right for you. I would agree with those on the forum that are worried about and for you. What's Wrong With Me is right in saying that you and your health must come first. Brenda

Mack's mom said it best, " Dr. Rowe, from Hopkins describes the anxiety he was experiencing, not as an emotional shortcoming, but as having a physiological origin due to the autonomic issues. When his HR went very high and his BP dropped out, Mack's body sent out tons of adrenalin to counteract all of that. The body perceives adrenalin ("fight or flight" hormone) as pure anxiety that seems to come out of nowhere. " My daughter is 13, has POTS and experiences anxiety. My daughter takes an anti-anxiety medication already and Dr. Grubb prescribed a short-term med for her to take when she is at physical therapy. She experiences a lot of anxiety when trying to work on sitting up higher. Many people with POTS have anxiety because it is a part of the illness. As a lot of other said here, I think it would be a good idea to get your daughter tested just in case because you seem to have a strong genetic background. As far as being worried and upset that she may have it, I know a little bit how you feel. I don't have POTS but when we were told it can be genetic, I right away worried about my other daughter, who is younger. For the most part, I try not to worry about her but concentrate on getting my other daughter better and keeping my whole family healthy emotionally and physically. I will pray for you and your daughter. As you well know, POTS is the pits but anxiety can also be very difficult. So, I hope that whatever is going on with your daughter can be figured out. If it is anxiety, medications can be extremely helpful. I know of many people out there who take them every day and couldn't live a normal life without those meds. Take care and God bless, Brenda

My mother who is a nurse said you can have body odor from the medications you take. I thought my daughter was more stinky because of being a teen but my mom said it could be more potent because of the meds. Just another thought of what might be going on. Brenda

I know from reading lots of posts here that Dr. Grubb has been a great doctor for many of you. My 13 yr. old daughter, who has POTS has been to see Beverly twice and Dr. Grubb once although the first time we were there we talked to Dr. Grubb for a few minutes before we left. I think he's an excellent doctor who is very compassionate and I love that he takes a lot of time to talk and listen. So, what's the problem? My husband and I wonder if we really need to spend the time and money to go to him when it seems that he hasn't really done anything more for our daughter than the doctors did from Milwaukee. We live only an hour from Milwaukee and now that she's older, other doctors would except her into their practice at Froedert hospital. We have felt like each time we were in Ohio, we were sent home with a new medication and that's it. We were not told to call and let the doctor or Beverly know how she was responding to the med and whenever I have tried to call there, it's almost impossible to get information relayed. I know Dr. Grubb is extremely busy and has a lot of patients but we are beginning to wonder how much he's really helping our daughter and is it worth it to drive 7 hours one way to see him when we have other doctors near us. I think we expected him to be a little more aggressive in helping her or is there nothing more that can be done? Maybe we're expecting too much and we've run out of medications to try and things to do. I just don't know what to do and I hate to just stop seeing Dr. Grubb after we went thru so much to get in there. He has so many adolescent patients and has seen it all so maybe we need to be more patient. I know my patience some days is at its end! I don't know how my daughter can be so patient for the last 28 months! Any advice would be much appreciated. My husband is really pushing this and I'm just not sure. One of the doctors at Froedert sees someone we know locally who also has POTS and she is already feeling much better and she has only had POTS for half the time as my daughter. Thanks for listening. Brenda

Firewatcher, thank you for putting this on this site. I still have yet to find a family to talk to who also has a daughter with POTS. This article was very well-written and got to the heart of POTS and also explained it so anyone would be able to understand it. I am also interested to hear about longitudinal studies done on teens. My daughter is now 13 and we've been told that she has an excellent chance of outgrowing it. Dr. Grubb told us that because she got it so young that she may be asymptomatic by 15 or 16 years instead of late teens. That would be absolutely wonderful considering all that she's been thru for the last 2 years and 4 months. I saved this aritcle and I'll read it again on the bad days when my hope is gone. Thanks again! Brenda