looneymom

I've read pros and cons about exercise for POTS. I am beginning to think that exercise is good as long as it is done in moderation. If you have not been exercising, you will have to start slow and build up. Exercise has made a difference for my son.

Hang in there and drink your fluids. My son has the flu so I have been alternating water and gatoraide. I also use the Freddy's Fruit Pops. He cannot do the vitamin C drops either, so our doctor said to give him more vitamin c in tablet form. Hope you feel better.

Thanks for posting this. I've already read the one on the caregiver and can't wait to read some other articles.

Sorry you had such a bad appointment. I would like to take my son to see someone to figure out some more things. Our cardiologist wants to send him to Vandy. Sure don't want to drive a long way to have this kind of experience. Hope your next doctors appointment is much better.

Just thought I'd give you an update on my son. Four days after he had finished his first round of Tamiflu, he started running a fever and coughing. He did not have these symptoms with Flu B strain. He spiked a fever of 102.5 Wednesday night, so I took him to the doctor again. They flu tested again since he had been off his Tamiflu for 4 days. He tested positive for Flu A strain, so they put him on Tamiflu again. The Tamiflu does not seem to be making his POTS worse and it seems to be keeping the flu symptoms from getting worse. My son has not been out since he caught the flu the first time. However, my husband is a school teacher, so he might have brought the virus home. Hope everyone is well and having a good day.

Yes it is Achilles. I use this model to monitor my son's blood pressure.

The worst part of POTS seems to be the beginning stages after being diagnoised because you really don't understand how its effecting your body. Start working with a physical therapist or do some exercises in bed, on the floor, or sitting in chair like leg raises, bridges, arm curls. Start out with a set of 5 or 10 max. Don't expect to see reults over night. Getting your body use to any exercise will be a challenge but you need to start getting your blood flowing through your body. My son was bedridden for almost 5 months and exercise was very hard for him. I have a blog survivingpots.com that tells about his journey with POTS. It will get better and take care of yourself and newborn. Hugs

My son is 12 and also has sleep problems. He takes 50 mg of zoloft and 1mg of clonazepam. He also takes 250mg of magnisum before he goes to bed. He takes benadryl occasionally but too much will make his vocal tic worse. It takes my son about an hour to get to sleep but he does wake up a couple of times, so he is not a sound sleeper. After we saw Dr,OZ show on melatoin, he decided he didn't want to take it anymore either. Have you tried the Sleepytime tea with valerian? This puts me out but my son is allergic to something in the product, so he cannot use it. I hope you get several respones to your post. Sleep is important and I would also like some other alternatives to try with my son.

Achilles hang in there. Exercise does help with POTS. My son was bedridden, He was so bad he could only sit up in a recliner. He did exercises to help core muscles first and he began to sit up on his own after a few months. I have a blog online called survivingpots.com. It is our journey of our son's illness. My son had to do many different types of exercise to strenghten his core and leg muscles. About a week ago, he was able to exercise on the wii fit for 20-30 minutes. I say a week ago because I know he is not able to do that now because he has the flu. However, from personal exerperience, I can tell you that exercise make a big difference and so does diet. My son may have lost some of his fitness level due to the flu, but he will come back up again. Try to keep a diary of your exercise program and if you can afford to start with a physical therapist thats willing to understand POTS, thats very helpful. My son was seeing a physical therapist before he got the flu, so it will be helpful to have someone else see what happens after an illness such as the flu. Never give up on exercise and diet. Exercise can make you feel better, and having someone to support you through this disorder also helps.

Thanks for sharing. Our cardioloist has visited with some of those doctors about our son. Our son may be going out to see them this year, if we can't get his levels of seratoine and dopamine up. Please keep us posted.

I use the OMRON BP791iT cuff to monitor my son's bp and heart rate. It has a huge memory and I can dump it to the computer to send to the cardiologist. I think I purchased this at Walgreens or Walmart.

I have been researching high histimines and MCAS. I have ran across articles and some blogs that suggest these supplements are very helpful. Does anyone use these supplements to help with high histimine levels. If so, how much do you take of each?

You will do great and your medical staff will take care of you. Don't worry about fainting because they ask you how you are feeling and will stop the test if they feel it is necessary. You and your doctor will be getting some valuable information and this test is worth it.

Which test have you had to check for iron? There is a basic fasting blood test and an expensive test that checks iron from the bone marrow. This last test is painful and expensive. It checks for your total iron count so the hemotologist can tell exactly whats going with iron in your body. Have you told your doctor about the strong metal taste in your mouth? Usually this is a sign that your body is getting too much iron. My son has finally got his iron level up with the Slow Fe Iron supplement. This formula is for people who don't tolerate iron very well. This can be purchased over the counter at Walmart or any drug store. His stomach was very sensitive to iron. It took almost a year to get it in the normal range. He has not stopped taking the iron supplement because doctors are suspecting metabolizing issues. His iron levels are checked every 4 months. Be sure to take iron with vitamin C and don't take it with calcium or dairy products. If you do, it won't asorb into your body.

My son is currently on 40 mg of midodrine 3 times daily because he has low blood pressure. In the beginning, when he was first diagnoised, he was only on 10mg 3 times daily. I had to monitor his blood pressure daily until he got to the right dosage. Until you get to the right dosage, you will feel pretty potsy. While trying to get to the right dosage, my son's bp would also spike. I sent in my son's blood pressure reading in weekly to the doctors office, so the cardiologist could see what was happening.

Both of these can be measured through a blood test. However dopamine can be measured through a 24 hour urine test. Before my son was diagnoised with POTS, he was seen by a natural/neuropath doctor that identified this through a saliva lab test. This test can be purchased online. Sad to say but many of our doctors would not acknowledge the test. My son went from being able to sit up to laying on a matress and rolling in pain all day long. At that time all I had was a cardilolgist to treat POTS and had never seen this happen before. I showed him this test and asked him about dopamine levels and parkinson's disease. That's when he ordered the first blood test and it showed that his body was not making dopamine at all and his serotonin was way below level. This is not a problem that cardiologist usually deal with but after seeing videos, he knew he had to try and figure out something. He did send my son a to neurologist, who did a spinal tap and it did veify that everything was way below normal. The neurologist did not know what to do with this either but she has been helpful treating his vocal tic.Our cardiologist has talked to doctors out at Vanderbelt Clinic. They are doing research there and from my understanding it will affect the nervous system. My son is on a shake that is loaded with amino acids. Amino acids are the building block to making dopamine and serotonin. My son will be having another test the end of February to see if the shake is helping. At this time the shake has helped his fatigue level and his is thinking much clearer. It's easier for him to last through 6 hours of online schooling. However, he stills has tremors and shaking from hips down. Google low dopimine and serotoin levels, There's lots of information. Hope this helps.

When my son was diagnosied with POTS our cardiologist said to drink lots of water and salt food heavily. However, his blood pressure kept falling out the more active he tried to get like 62/42. He never passed out on us but it scared his pt. By luck our cardioloist called our home when this incident happened and actually talked to the physical therpist and my husband. My son's midodrine and flornif was increased. We were told to get thermotabs and give it with these meds and monitor his blood pressure daily. By monitoring his blood pressure, I was able to tell when he was getting enough salt or too much. My son takes 8-10 grams of salt a day. He uses the thermotabs when he has not ate and needs to take his meds. He does use the regular salt tabs after meals. My advice is to start monitoring blood pressure daily and add salt as needed until you find what works for you.

I have been told that it's best if you only have POTS and nothing underlying by our cardiologist. However he has told me to keep track of all my son's symptoms and symptoms that keep recurring or make POTS worse to let him know. At this time, our cardiologist is talking to people at Vanderbelt Clinic. My son has low dopimine and seratoin levels. At this time we still do not know what type of POTS he has but know that it was caused by a virus during a growth spurt. I would suggest that you keep track of symptoms, take you blood pressure daily, ( take when feeling somewhat good and when symptoms are at their worst), find a family doctor who will listen, research your symptoms and bring those articles in to the doctor.Last all, never give up on looking for an underlying condition especially if the symptom causes a setback in your condition.

I would tell you to use Iodized salt because of potassium issues that might develop. My son was just using plain sea salt. This can also be bought iodized.I saw some improvement after we made this change. However, I also know that my son has low renin and low adlerstrome, which can be an indication of low potassium levels. MAYO also recommended sea salt and thermotabs to use with my son. Hope this helps.

Good for you! Too many people and doctors do not understand POTS.

My son got the flu shot 10 days ago and has the flu now. His POT symptoms are worse. He is also taking Tamiflu and so far I really don't think it has affected the POTS. The first day I realized it might be flu, he started chilling, could not stand up to walk, and he complained of more muscle pain. He started taking Tamiflu the next day, so far his symptoms have not gotten any worse yet. Today will be his third day on it, so hopfully nothing will be worse. Last year, he took the flu shot the last of November and never got the flu. So it might take longer for it to build up in a POTS body.

My son has muscle pain in legs and arms. We have started working with an OT that deals with myofascial pain syndrome. She has only worked with him one time but we will be going back to see her. She has also suggested that he go see an internal medicine/functional doctor. My son has the flu right now, so his POTS symptoms are much worse including the pain. I goggled web MD on Myofascial Pain Syndrome and I have a better understanding of it. My son has been in pain for over a year but no doctor seems to want to deal with it because he is only 12. However the OT, is going to write a letter to our doctor to see if she can get some other things rolling. She has worked with this sydrome for over 15 years and has had the proper training. My son had low vitamin D and iron levels but these levels are in the above normal range but he still continues to have the pain. I wonder about potassium levels because he has low renin and adlerstrom levels. Hang in there and hope you find help soon.

Interesting article. Wondering when they will release it to the public.

My son has the flu and he started on Tamiflu late this afternoon. His POTS symptoms were really bad this morning and I really don't want my son to go back down to being bedridden again. Any tips on how to survive the flu with POTS would be appreciated.

I don't have POTS, but I am a parent of a 12 year old boy that does. Every doctor that said it's in your head, my son never saw them again. At first, it might be easy to believe that, but when the symptoms return over and over again, you realize that POTS is for real and it's unpredictable. My son has finally accepted the fact that his body just does not work right all the time. When he over does it, he knows it. He has tremors in his legs and has a vocal tic. Our goal is to find the right medications to manage the symptoms, so he can eventally go back to school. Believe in yourself and listen to your body. There are so many symptoms to POTS and doctors just don't know enough. Never give up looking for a doctor to treat your symptoms. This forum has great information that you can take to a doctor. If your doctor, does not take you seriously, it might be time to find someone new. Hang in there and do what you know best that helps manage your symptoms.