bkweavers

We took my daughter to a different doctor in April. Before that time, her physical therapist told us that she had noticed our daughter was able to handle more during therapy and maybe it was time for something different like vestibular rehab. The doctor told us and communicated to the physical therapist that some of her POTS symptoms were gone and it was time to really push therapy. He told her and our new therapist that there really wasn't anything they couldn't try with her. She started vestibular rehab 4 weeks ago and so far, we are very pleased with the results. Along with therapy 2 times a week, she's been sitting up 2-3 times a day, standing, walking more with help, and we're considering trying a walker soon. My daughter is starting high school in the fall and I want her sitting up and walking! The doctor said it's possible with a lot of hard work and so far, she's been tolerating everything being done in therapy and at home. Things used to throw her body into horrible dizziness for days and that has not happened in a year! My questions is this, are we doing enough? I want this child to get better and I want to make sure that we're covering all of our bases. It's been 3 years and 4 months since she became ill and with adolescents, they have a chance of coming out of this. Any suggestions would be welcomed. Brenda

Hi Lenna, I've found that doctors don't always catch it that meds don't mix but pharmacists do! I would call the doctor and alert him to what the pharmacist said unless your pharmacist will talk to him. Brenda

My daughter started vestibular rehab 4 weeks ago. It was recommended to try by her other physical therapist who thought that maybe her vestibular system was off. My daughter has POTS and has such bad dizziness that she's been basically down for 2 and 1/2 years. So far, she's been improving quickly but we are pushing her much more than we were before this began. Her therapy has consisited of using a recumbent bike, walking with the help of a gait machine and she just started using a walker. At home, the therapist has encouraged us to get her walking with one hand, sitting up for longer amounts of time, standing in a corner with a high back chair in front of her, and standing in the pool. I'm curious as to what you've been doing in vestibular rehab so far. I've never heard of visual-vestibular dysfunction. What is your dizziness like or how would you describe it? Brenda

My daughter (14 yrs. old) who has POTS has had dizziness while lying down also. She hasn't had these episodes in a long time but when she did, she would get horribly dizzy for 3-4 days. It sometimes came with her menstrual cycle and she would be very dizzy even while lying down. She would get these episodes 4-5 times a year. She still is dizzy every time she gets up. She explains her dizziness by saying that she's spinning. Her doctor is saying that she is showing signs of getting better and that we need to get her up and moving as much as possible. I don't know how long you've been sick but I do know that staying as active as possible is the best thing to do. At the beginning of my daughter's illness, she was so bad that that would've been impossible but now her body is tolerating much more movement and exercise. This is improvement after more than 3 years though so if you're at the beginning of POTS, it may be more difficult for you to push yourself. I hate to say this, but none of the medications she tried really helped the dizziness. I do know I've read of other people on this forum however, that were helped by medications. You could search the website to find what meds those were. I know what I've said here may not help you but I hope that knowing that your symptom is common with others, that it will help you to know that you're not alone in this. It is a terrible illness and coming on this website and talking to other people about it has certainly helped me and my daughter. POTS is unknown to so many people and it helps to talk to people who understand what you're going through. God bless you and take care of yourself, Brenda

For adolescents with POTS or any autonomic disorder, it is very different from an adult. Adolescents and teens are going thru puberty and that can change things tremendously for someone with POTS. A medication that worked last year, may not work all of a sudden due to body changes. It's a roller coaster and believe me, we've been through quite a bit with our 14 yr. old daughter. For girls, their menstrual cycle can wreak havoc on their bodies. My daughter would get such bad dizziness and headaches each month, she could hardly move. That went on for 4 months until finally her period evened out and only came once a month. Our doctor told us that teens have an 80% chance of growing out of it but it's a slow process. We are over 3 years into it and slowly we've seen small signs of improvement. It's been a long 3 years but hopefully, we're on our way back up. I guess the best thing to do is not to push your daughter. She may have to cut back on school and sports and anything else that provokes her symptoms. She will need the extra rest and sleep if her body is going to recover and of course, lots of patience. It isn't easy to watch your child suffer but your daughter will become a stronger person because of it. My prayers are with you and your daughter. If you want to talk or ask other questions, feel free to send me a message. If it wasn't for the many people who supported me and gave me advice about this illness, I wouldn't have survived. This web site and others saved me and gave me hope and that's what we all need! Brenda

Are you doing this at home or at a physical therapy place? I'm curious because we're going to see if vestibular rehab would help our daughter with her dizziness. Her physical therapists recommended that she try this rehab and I think part of it may be tilt table training. Brenda

Brye, Do you know a reliable high school or older middle school girl who could babysit part-time? Many of my daughter's friends have part-time babysitting jobs and those girls would have the energy to take your kids to the park and wear them out good! That would be cheaper than a nanny if you can find a trustworthy teen. Does your school offer summer school? I know that just sounds like you're trying to get rid of your kids but our school only runs in for June and then a few weeks in August. Just some thoughts and suggestions. Brenda

So sorry for what you and your child have been through! From what you've described, she could have POTS or another autonomic disorder. You might want to contact dynakids website as well. The woman who started that website has a daughter who was diagnosed at age 9 with (I think) POTS. Children can get POTS young although it is rare. She was very helpful when it came to my daughter and that website has other contacts on it as well. Do what you have to do to help your daughter. I know right now, your strength and patience is probably wearing thin but it is so worth it to find the right doctor. We drive about 8 hours to go to an autonomic specialist in Toledo, Ohio. If your daughter does have an autonomic disorder, keep trying until you get to the right doctor. It is so worth it to have someone who knows what they're talking about, believe me. We had to see some horrible doctors to get to the right ones and I would love to see someone else not have to go through what we did. My prayers go out to you and your daughter. I hope you find out what's going on with her. Brenda

You guys are so awesome!! You brought tears to my eyes and said things that I needed to hear. It's always funny to me that just when you need it most, God sends people your way to pick you up and support you and that's what you all are doing for me. I do know that God has great things in store for my daughter. She goes to school for 5 hours out of the day and teachers and other students are amazed at her positive attitude and strength she shows. I'm praying hard for her to sit up next year so she won't miss out on quite so much. She does keep going as much as possible and we have an amazing youth group at church that she's involved in. Amber - what you said, I have had those same thoughts before.(And to anyone out there who has battled cancer, I really don't mean to mimize it either!) My daughter had a child in her class who had leukemia right before Liz got sick with POTS. She got better within the year and is doing great -playing basketball and going to school full-time while my daughter has been sick so long and our end isn't in sight yet. In some ways, it is harder because outside people don't understand POTS like they do cancer. Thanks again for the support and words of encouragement! Brenda

You guys are so awesome!! You brought tears to my eyes and said things that I needed to hear. It's always funny to me that just when you need it most, God sends people your way to pick you up and support you and that's what you all are doing for me. I do know that God has great things in store for my daughter. She goes to school for 5 hours out of the day and teachers and other students are amazed at her positive attitude and strength she shows. I'm praying hard for her to sit up next year so she won't miss out on quite so much. She does keep going as much as possible and we have an amazing youth group at church that she's involved in. Amber - what you said, I have had those same thoughts before.(And to anyone out there who has battled cancer, I really don't mean to mimize it either!) My daughter had a child in her class who had leukemia right before Liz got sick with POTS. She got better within the year and is doing great -playing basketball and going to school full-time while my daughter has been sick so long and our end isn't in sight yet. In some ways, it is harder because outside people don't understand POTS like they do cancer. Thanks again for the support and words of encouragement! Brenda

I don't have POTS but I do get frequent migraines and barometric pressure definitely has a part in my headaches. Same goes for my mother, who suffers from daily migraines. Her and I will both have headaches on the same days when barometric pressure fluctuates. So I'm sure the same goes for your symptoms. Brenda

If your daughter continues to feel miserable, she should not have to continue to go to school like that. When my daughter became ill, we put her in special ed and she only went to school for 3 hours each day. Now, she's there 5 hours and is better than 3 years ago but many kids with POTS have a 504 plan or are homeschooled because they just can't handle school. If she continues like this, the school may have to modify for her and believe me, it will take so much stress off of you! It sounds like you need a doctor more willing to try some new medications and fight to get your daughter feeling better. Teens with POTS do go through some bad times especially at this time of year but she should not have a doctor telling her to just "put up with it." Her doctor should be telling her to take care of herself right now so she can get past this bad time. Grin and bear it is not very compassionate! I hope and pray there are better days ahead for your daughter and all of our kids with POTS. I for one can not wait for the day when I just see my daughter sit up on her own! Brenda

I know there are some medications that help fatigue in POTS patients. My daughter was on Adderall for a short time but not for the reason of fatigue. They were seeing if it would help her dizziness. It didn't and so we went off of it. She is on xanax for headaches and I know there are some parents who wouldn't want their child on that because of it being addictive. I say which would you like - a child who has daily pain for a year or a child who is without headaches and can function better? I know that other people have found success with Adderall and other meds like it and if it works for your daughter, it will be worth her having better days then being miserable. I don't know how many medications she is on right now but I do know that Dr. Grubb told me that teenagers' bodies change so much. A medication may work at first and then stop working. A med may not work the first time you try it and then work later on. It's just the nature of the teenage body. I think it's definitely worth trying new meds with her. I hope her POTS doctor is more receptive to trying new meds and that you have some success with him/her. My prayers to you, Brenda

Yesterday, it was the 3 year anniversary of my daughter becoming ill with POTS. I can so distinctly remember standing by the kitchen counter getting her ready for school and her telling me she was dizzy with a headache. It still astounds me that the day before, she was a normal 10 yr. old running around outside with no symptoms and the next day and since that time, she's been dizzy along with many other symptoms. Shouldn't POTS leave the same way it came? That would be great! This is just really hitting me hard right now. She'll be graduating from 8th grade and she tells me about all of the things that her friends are talking about trying out for in high school like dance team and sports. It just makes me sad, angry, and frustrated that she can't even do any of those things right now. People keep saying to me to think of all of the ways that she has improved and I'm very thankful that she is improving in small ways, but I just can't get past it right now that high school is coming soon and she'll be missing out on so much if she can't sit up, stand, or walk on her own. I know there are plenty of people on here who have it so much worse than we do and to you I apologize for my pity party session. I just hurt for my child and all that has lost in the past 3 years. I know all of you have compassion and understanding for what my family has been through. I just wish the outside world could gain some of that and not just casually pass it off as "at least she doesn't have cancer." Thanks for listening, Brenda

I heard the theory about people with POTS being tall and thin. That doesn't apply to my daughter either. Other thing I've heard is that 4 out of 5 people with POTS are woman. Some research on why that is would be good. Actually, I would be happy for any type of research for adolescents. Brenda

I too, am sick of doctors who think this is just a inconvenient type of illness. My daughter, Liz is almost 14 yrs. old and has been ill for 3 years with POTS. For the past 2 and 1/2 yrs., she's been unable to walk, sit, or stand without assistance due to her dizziness. I'm tired of people in general who know us say "Well, at least it's not cancer," like that's suppossed to make me feel better! For some reason with illnesses in which people don't look sick, comes very little compassion. I'm not sure why that is. I wish I could give you some help on your questions of CFS or connective tissue but I can say that I hope and pray you do find the answers you need to help your daughter lead the best life she can. It's not easy to be an advocate for your child but keep it up and keep pushing the doctors to get your daughter the right meds and help she needs. Brenda

My daughter takes xanax and pindolol(another beta blocker) together every day. The xanax is only a .5mg dose and she takes it at night so hard to say how sleepy it makes her. So, I do think you can take the two together. I don't think taking more beta blocker for a flight is going to help your anxiety but the xanax would. I would ask your doctor how much xanax to take for the flight. My father takes xanax just when he is flying for anxiety and it helps him. I know of other people including myself who also get very anxious when flying. I just take Dramamine or a drug like it and it relaxes me enough. Hope some of this helps. Brenda

Hi Sarah and welcome to the forum! You've come to the right place to ask questions and get the support you need. I'm very sorry to hear about your POTS diagnosis. To answer your question about age, my daughter was 10 yrs. old when she became ill with POTS. Looking back, the symptoms began right when puberty started. On the day she became ill, she had a fever, body aches, dizziness, and headaches. The fever and body aches went away after a few days and the dizziness hasn't left since. That was 3 years ago. Her POTS doctor told us that she was young when she got POTS. The median age is usually around 14 for adolescents. I have noticed other adults on here who have also said that they noticed symptoms their entire lives. You mentioned having an anxiety disorder due to some experiences. Do you know that anxiety is a symptom of POTS? It is a symptom that my daughter also struggles with so I hope that makes you feel a little better. Are you on any medications? Certain medications can help with brain fog, anxiety and your other symptoms. They aren't a miracle cure but it may help you to function better. You may also want to talk to some of the other college-age people on here to get advice from them on how many classes to take and how they are getting thru college. Right now, I don't think taking a full load is something you and your body can handle and maybe if you would only concentrate on a few courses at a time, you will have better success overall. Have you heard of the Dynakids website? I don't think you're too old to join but I know there are people on there in college who I think could be a huge help to you! I know there are many that have gone on to be successful in college and after. My daughter is a member on the kids forum and I'm a member on the parents forum. It's another great place for advice, knowledge, and support from people who understand. Hope some of this helps you. Take care and God bless, Brenda

Notgivinup, I've had the same results with this doctor except it's my daughter he's treating and not me. We went to him because he's suppossed to be the best around. We were told by one of his nurses that he would make her much better. That has not happened. The communication has been terrible. I call and it's maybe a week later when someone gets back to me. The last time I called to see what medication would be tried next, I never got a call back! We are now taking her to a doctor only a hour away instead of a 7 hours trip. Maybe we will go back to this other doctor, maybe not. He really hasn't done anything for us. The only reason my daughter is doing better is because of us and her physical therapist. I've spent countless hours on the internet talking to other parents and adults with POTS and have learned much more from all of you than I ever learned from a POTS doctor! I didn't expect this doctor to perform a miracle on my daughter because I know he's only human, but I expected much more than what we got. I guess I've lost quite a bit of faith and respect for doctors in the past 3 years. Even the good ones seem to lose themselves along the way. Or maybe they need to communicate to their staff what should be expected. It sure seems like communication between the doctor and nurses and office staff has broken down in this particular office. Brenda

I also have to say that our pharmacists are excellent. They are great listeners, they make sure and answer any questions and they have been very helpful. I can't tell you how many times in the past year, they've made phone calls to doctors to make sure that my daughter got her medication when the doctor wouldn't call back. We go to the pharmacy so often, they now know me by name. You would think someone in any health profession would be helpful to people but I guess that's not always the case! We had a suppossed POTS specialist who was the worst doctor you could imagine and head of cardiology to yet! Brenda

I looked up posts from the past and noticed that some of you have had vestibular rehab. This is the story with my daughter. In March of 07' when she was first diagnosed with POTS, the ENT doc ruled out any vestibular issues. She saw him at least 3 times and had numerous tests run and everything was normal. Since Sept. of 07', she has been unable to stand, sit or walk on her own because of the dizziness. She is always reclined. Now, she has had small improvements since a year ago and her physical therapist has been trying different exercises with her. The therapist has recommended that Liz have vestibular rehab at this point. She believes that because she's been reclined for such a long time, that even though her vestibular system was fine at the beginning, it may not be now and that maybe it is holding her back from improving even more. She thinks that maybe this type of rehab would help her as she is working on sitting up, standing, and walking. For those of you who have gone through this, what do they do? How long were you in rehab for this? Do you think it helped? I know a little bit about this but I have the feeling it is going to be very uncomfortable for Liz but yet, I'm hopeful that it may help her. Now comes the part where I have to talk my insurance company into letting us take her to someone out of our network! I have this wonderful feeling they're going to make us drive an hour away just so they don't have to pay for out of network! Anyway, thanks for listening! Brenda

My daughter was told by her doctor that she also will need to push herself if she's going to get better. Her main symptom has always been dizziness and six months after getting sick, she got worse and was unable to sit up, stand, or walk on her own. It's been 2 and 1/2 yrs. now. We are working on making her sit up every day for a small amount of time, even though it always makes her dizzy. We will be slowly increasing the angle and the amount of time but it's slow going. She also goes to physical therpay and the therapist has her do a lot of exercises that are very uncomfortable for her. I'm glad to see it though because she needs to be pushed a little. A year ago, her body would not have been able to handle this. The therapist would try different exercises only to have Liz have extreme dizziness for days after. The therapist pulled back and decreased the exercises and only until recently, has added new ones. So, I guess the bottom line is that your body will let you know when you've gone too far and you have to communicate that to the therapists. It is definitely a trial and error type thing though to see how far you can go! Brenda

My daughter became sick 2 months before her 11th birthday. Dr. Grubb and Beverly told us that the younger a person is when they get POTS, the better the recovery. I think that has just been what they've seen from their experiences with their patients. They also told us a 5-7 year time frame of recovery. We saw Dr. Grubb last July and when we mentioned the small improvements our daughter was making, he said that was encouraging. He said my daughter is in the 80% who will recover because she has been improving, rather than continuing to slide backwards. I don't think that means that she will never have a down time but overall, things are getting better. I guess the thing to remember as well is that everyone is different. Some may never be back to what they were before the illness, some tend to go thru times of feeling great and then have a backslide again. The best thing to do is take care of yourself and try not to worry what may be in the future. I know as a mom, that's easier said than done but I've tried very hard to not focus on the future too much and focus more on the now. I'm also trying to feel hopeful and I get that from my daughter. She is so upbeat and hopeful that she will get better and I just have to believe that! A lot of praying definitely helps too! Brenda

Hi Lizzy! My daughter was diagonsed at age 10 with POTS. She is now 13 and still very debilitated but has improved in the past year. Sounds like you have a good doctor and you are very fortunate to have found a doctor so quickly that knows about POTS. I would be happy to help you out if you have any questions or just want to talk. I know you have POTS but it can be a very different story for adolescents and males compared to females. I don't pretend to be an expert but we have been thru plenty and I would be happy to help out. I was and I still am very grateful for all of the help and support that I've received from this forum and others like it. Take care and God bless! Brenda

Nikki, I feel for you since my daughter's main symptom is dizziness. She has been unable to stand, sit, or walk unassisted since Sept. of 2007 when her dizzinness got bad overnight. I don't say that to scare you but it seems that very few people that I've talked to on this forum or others have experienced this type of dizziness on a day to day basis as my daughter. Her dizziness is pretty much always the same except when she has really bad days and then the dizziness is so bad that she is dizzy when lying down. Her doctor is telling us that she is going to need to work thru it and work at sitting up at small increments of time if she wants to get better. The difficult thing about that is she has been down for so long that her anxiety levels really increase when trying to sit or stand and she tells us that she doesn't even know what her body is doing anymore. There is hard work ahead for her! How would you describe your dizziness? Does it decrease when you lie down? Liz describes it as she is spinning in circles. We've tried many different medications for it but none have really helped to this point. We haven't ever tried meclizine, which I've heard has helped some people. I hope and pray for you that this is just a bad, initial phase your body is going thru and that you can come out of it. I would suggest to try and continue to stay upright as much as possible. Sometimes I wish now that we would have pushed Liz a little more to do so but when you're dealing with a then 11 year old who is complaining of the dizziness, it's easy to give in. Maybe in the long run, it will help if you try and keep your body more upright. Brenda