Jean123

Has anyone gotten relief from their symptoms while lying upside down? When my son feels really bad he hangs his head over his bed till it touches the floor and gets relief. He is now at The Institute for Research and Rehabilitation and they have placed him on a tilt table for 15 minutes upside down and he could do everything (throw a ball into a target, draw a picture, write his name, etc) and didn't get a head rush. When he is placed right side up (not after the upside down time - just in general) he can't do any of those things because he has such severe muscle spasms that cause him to rock.

I believe that my son has some degree of anxiety and has since he was young however, since he does they want to blame every single thing on that diagnosis. They over analyze every move he makes. I'm glad to inform the forum that his POTS symptoms have improved significanlty however, he still can't walk. His cardiologist who diagnosed him with POTS said that his symptoms could go away and they have however, he now has muscle spams so severe that his entire body rocks when he tries to move. After a year he is finally able to sit up straight without his body rocking or his heart rate jumping up to 130. Whenever he bends slightly his body rocks due to muscles spasming. The anxiety diagnosis has created many problems throughout his course of treatment because, the docs won't run test to rule out other things. They blame everything on the anxiety. He has been in at The Institute for Research and Rehabilitation for the past month and will be there at least another month. We had to get rid of the neurologist from TCH so that other test could be performed.

I read the discussion board weekly to keep up with everyone however, I never have time to respond. My son, who is 13, has been diagnosed with POTS. It seems to me like everyone has spells of tachy but doesn't feel it every single time you sit or stand. I realize that some have it worse than others. I see my son struggling with it every minute of the day. We finally got a tilt wheelchair where I can take him out of the house and STILL his heart rate goes up to over 115 while tilted. His therpist says it looks like he can only handle being at a 20 degree angle without his heart racing and his blood pressure dropping. We have been going through this since the end of December. I'm afraid for him. He tries to be a hermit by staying in his room however, I won't let him. This has been the most horrific experience of my life. We leave tomorrow for Dallas to see a specialist there. I'm hoping for better days ahead. This illness has taken a toll on my family and how we communicate with each other. I miss my son's conversations in the kitchen and how he was always there to lend a helping hand. He is a great kid that I see drifting away from us. Sorry to be so down. We are all just extremely concerned and frustrated right now. I know things will get better. If you have any suggesstions on how to get him involved with peers his own age please let me know. We live in the suburbs of Houston Texas and I want him to know that he is not alone. I have already checked out the 'kid friendly' POTS websites.

Wow! I have difficulty facing what my son is going through at 13 years of age. I couldn't imagine a 5 1/2 year old going through the same thing. I have looked at all of the doctors on the website. I know that it is a good resource however, I was just trying to find someone who sees children that would have a good bedside manner. I live in Houston and as large as it is we don't have ANY testing facitilites. My son does not need to have a tilt test because he has symptoms everytime he gets up. His pressures now drop (and of course his heart rate races) when he sits as much as it does when he stood a few weeks ago. He can't walk, stand, or sit. He can only lay in an elevated bed. He also is in therapy. We are going to have to drive a very long way where ever we go so I would like any information on doctors. I have seen Dr. Grubb's name mentioned many times on this site. I also heard that he was sick. Does anyone know if he is better and seeing patients again?

My son's cardiologist has decided to honor my request for a referral for some dysautonomia testing. I have read many of your posts regarding doctors and places to go. I need to find a doctor who has a caring bed side manner for my frightened, 13 year old, son. I don't think that he can handle anymore doctors who look at him like he is crazy. He has already been to a psychiatrist who ruled that diagnosis out.

Welcome! I'm an newbie as well. My son was recently diagnosed with POTS and this site has been a lifesaver. I understand your concern about your job. I'm having to take intermitent family medical leave in order to keep my job and yet take care of my son. You might see about doing the same if you have had to take off days due to your illness and doctor appointments. The intermittent FMLA protects your job. It allows you to take off when you need to without pay however, also allows you to work when you can. My family has nearly hit a financial crisis over all of this. We keep praying that God is going to open some doors for us soon. I work with children on a daily basis. I think the most important thing to them is knowing that someone will always take care of their needs and that you are not going to die from POTS. My son was playing on a basketball team in December and by January he was placed in a wheelchair unable to do much of anything. Sitting even makes him extremly fatigued and dizzy. My 9 year old daughter wasn't concerned for him at first. She wanted to make sure that our time together wouldn't be messed up and that her friends could still come over. Now, she is more concerned that he may never walk again. We have to constantly reassure her. I like the idea of inviting her to your bed to play and spend quality time together. When you do feel up to doing things with her make sure that it is done in small quantities so that you can reserve some energy for later. Don't overdo. Hopefully your husband and your daughter can have some quality time out together to when you are feeling at your worst. That will make her feel special without worrying her about your health. You can act as if it was planned all along and then sleep while they are out. I don't know if anything I said will help. I do know that you are in my prayers and that I wish you the best. Good luck! Lynna

Ginger, I'm glad that you will hopefully have the answers you have been searching for. I noticed that you mentioned that you felt sorry to see all of the kids in the waiting room. My son's cardiologist told me that none of the clinics saw kids younger than 18 years of age and refused to refer us out. We are desperate to find answers for him. He is 13 years of age and went from playing basketball one week to needing a wheel chair the next. Please let me know where you were that you saw kids and if they were younger than 18. I would also like to know what the test were like. Which ones were the most painful or the most difficult to go through and why they (the doctors) felt they were necessary in the diganosis and treatment. I wish you luck! Lynna

How in the world do people cope financially when it is a child that is affected with a disabling condition such as POTS. My husband and I both have disability insurance but, nothing for our kids! Due to my son's continuing problems with POTS we are looking at going from a two income to a one income family. We don't make a lot of money however, we make too much for any government assistance. I am still working however, it is more part time than full time. The medical bills are starting to pile up and we still have a long road ahead of us. We have pulled together all of the resources we can think of (neighbors to help us with him when I am working, my husband takes longer lunches from work, my mother was helping but will be having surgery soon and she works also). Where do you go to get assistance for working families who have children with disabilities???? Any suggestions out there?

Thanks for everyone's suggestions. My son is on Flornif and Midodrine. He didn't show any signs of side effects from the Flornif however when he started on the Midodrine his appetite decreased. He went from weighing 102 to 94 pounds in one week eating 3 small meals a day. Now he only eats one and sometimes 2 small meals a day. He refuses any snacks. Effective yesterday, his doctor took him off of the Midodrine. Today he was vomiting however, he has since been able to keep down fluids. He hasn't had any GI issues until now. He doesn't feel well after he eats but won't confess if he has any other symptoms.

Being a newbie, I am still learning about POTS. My 13 year old son was recently diagnosed. On Friday, we found out that he lost 8 lbs in 7 days. His appetite has decreased significantly since his dr. added medication to increase his blood pressure. Has anyone else experienced these problems? He is still extremely dizzy upon standing and is unable to stand still or walk without assistance. His doctor told me Friday that he has several POTS patients that are now on feeding tubes. I'm getting a little nervous! I'm the one that is suffering from anxiety now!

I'm a newbie to the group and don't have POTS however, my son was just diagnosed. I HAVE HAD A EMG and it is not painless but, depending on where and how long they test it doesn't have to be painful either. Do not allow them to test your entire body in one day. That was my stupid mistake. My legs didn't hurt however, my arms ached like I had over exercised them for days. Mild over the counter pain relievers helped some. Remember that pain is different for everyone and the more you relax (easier said then done sometimes) the less painful it is. Good luck!

Wow! Thanks for all of the responses. My son is currently under the care of a cardiologist. Although, he has been seen by SEVERAL neurologist who could care less. The first neurologist diagnosed him with migraine headaches (although my son made it very clear that he never has headaches), the next (several neurologist) he saw were in Texas Children's Hospital. They just knew by his symptoms that he had a brain tumor and when the MRI came out fine they dumped him like a hot potato! After a 3 day hospitalization they told us that they didn't treat orthostatic problems and refered us to a clinic that treats vertigo. I only found ONE doctor that treats POTS in Houston on the websites. Dr. Kelly. I'm going to attempt to call her office today. I also found several doctors in Dallas. Does anyone know anything about Dr. Levine and the clinics in Dallas?

My adolescent son was just diagnosed with POTS. Although we have had some relief of receiving a diagnoses, we were also told that he has other symptoms not related to POTS. His has recently been wheelchair bond due to lack of leg coordination and his inability to balance. Because he gets pale immediately upon standing and states that he starts to see black dots his doctor wants him to see a psychologist to rule out anxiety. Has anyone ever experienced the sudden onset of problems (however not totally blacking out) everytime they stand up? We live in Texas and I have no idea where to go from here. The only tests that have been performed are EKG, chest x-ray, echo, MRI of the brain, and blood test. He also has his pressure monitored every week. His blood pressure lowers upon standing and his heart rate increases. He also has MVP. That is all of the info. I have received from his doctors. I fail to see the connection between standing up and ANXIETY! Can anyone help?