looneymom

When I realize my son is having a bad day, I do my best to remind him of the better days ahead. Living with POTS is not easy. If you realize you are having one of those bad days, try to slow down and go to your happy place in your mind. What was once a normal life pattern, has now changed for you. POTS makes life unpredictable. Take one day at a time and live life to its fullest.

My son takes about 8 grams a day. He takes midodrine and florinef.. He takes midodrine 3 times a day, so he always takes 2 grams with each dose. Then we spread the rest of the salt throughout the day. He drinks 2 liters of water plus gatoraide. His blood pressure is stable but sometimes we have to give an extra thermotab after exercise because his blood pressure goes down. His last dose of meds. is at 8pm because he goes to bed around 9:30 pm. If your stomach gets upset try the buffered salt like thermotabs. My son takes these between meal times. At one time , he suffered from a never ending headache but after he got his iron and D levels up, the headache is gone. To fine the levels my son needed, we had to take blood pressure and play around with the salt levels too. Hope this helps.

Hi Puppylove, In the beginning my son caught everything. He takes about 3000mg of vitamin C everyday and some other supplements to help with immune system. This seems to be helping because I can get him out of the house for a short time and he's not sick 3 or 4 days later.

I love this post! However can anyone tell me what doctor checks for a NET Defiency?

Welcome! It will get better but you must listen to your body. Try to eat healthy, drink your water and take your meds. However, you will have bad days and good days. But the good days make up for the bad days. Especially if you can have several in a row. If you are not exercising, try to start some back. Your body may say no, but try to do it 3 to 5 days a week. A good physical therpist can be very helpful with this area. Take your life one day at a time. One year ago, my son was totally bidridden. He is now able to walk around and exercise 20-30 minutes 3-5 days a week. It was a lot of work to get to this point but worth it.

My son's heart rate dropped down to 30 during a procedure last August. My husband and I did tell the staff and doctor that he had POTS. So they were prepared but surprised that it actually happened. Just be sure to always educate your doctors and kept track of what meds. were given for the sedation. This is a scary situation for anyone with POTS.

I took my son into our family doctor to do a follow up. I also took some of the MCAS articles that have been posted on line.Great articles! You guys are so helpful. Our doctor is going to look at the information. My son has allergies and has strange rashes from time to time. He has the flushing and pain issues. He has been tested for food and other allergies but nothing showed up. However, if I don't keep him on allergy meds, he has a runny noise or a hoarse voice. If his vocal tic starts up and I give him more allergy medicine, it stops an hour later. So I am getting a little suspious about MCAS. However, our doctor said that my son would be sick with infections and virus all the time. Is this true? When our son first got sick, he was sick all the time and thats when I started giving more vitamins and supplements. Does MCAS keep a person sick all the time or do the symptoms come and go?

How old do you need to be to participate in this program? My son is twelve but can only stand for about 30 minutes due to pain issues. Is this program online somewhere?

I don't have POTS myself, but I can see where you are coming from. My son's condition got worse and he was not able to go back to school this year. He was very active and outgoing. I quit my job to stay home and care for him. My son has bad days and good days. What works for him is to keep him on a routine. Like go to bed at the same time and try to get up at the same time every morming. He watches his diet because he is trying to lose weight. When he is really feeling good, we try to get out of the house. Maybe just for a walk or a trip to walmart. He exercises everyday 20-30 minutes. Being homebound is not much fun at all. Try to take advantage of the times when you feel like doing something. POTS can be so unpredictable but try to enjoy your life as much as possible. Finding things to do that takes your mind off your illness really helps. I'm so glad you have suportive parents but I can understand your need for independance.

It's been a year since my son was diagnoised with POTS. Things are better but its been a long haul from being bedridden to being able to do the xbox connect for 20 minutes. We have a cardiologist, neurologist, physical therapist and a family doctor to help manage POTS. However, I am constantly researching and looking up other medical conditions because of a pain issuse. So far our doctors have been willing to investigate and run other test to rule out other conditions. Make your appoinments and keep researching. Exercise and diet has also made a difference with our son. Be patient with your doctors. Keep making changes with exercise and diet to see what helps the most.

Thanks for the link. I will get this to our doctor.

Our cardiologist is not sure. He has talked to someone at Vanderbelt. Our son is drinking a protein shake three times a day that is high in amino acids. I'm wondering if it's a metabolizing or defiency problem of some sort. My son has less fatigue and is functioning better throughout the day since he started the shake. Is there a link to this paper online?

My son is only able to exercise Monday-Friday. He does 20 minutes of strenght training in the morning and exercises 25 minutes on the xbox connect in the afternoon If he does it on Saturday, the next day is very rough. His body does not recover without the day of rest. The MAYO doctor told us 3-5 days a week was fine. In the beginning, my son actually had to take Wednesday off because he was wore out. Listen to you body. It won't hurt to take a day to let your body recover.

Issie, Which supplements do you take, when you are having a really bad day with pain? I would like to try some with my son.

Since my son has been diagnoised with POTS, he has always complained of pain all over. He does not have EDS or fibromialga. He has been seen by a rheumatologist. His pain level goes up after he exercises. He is also very sensitive to touch ( like to press down on leg, arm, ect..). His scalp is tender to touch and he is not able to tolerate clippers against his scalp. He has had defiencies with iron and D levels. These levels have come up and his headache is finally gone. But I am wondering what would be causing this other pain. Could this be a bone pain? He has not been checked for MCAS. Do mcas patients have this kind of pain? What other illnesses would cause musculoskeletal pain?

POTS really can be a rollarcoaster ride and scary. I hope and pray that you have found a docto/nurse with good listening ears. When all this started with our son, I was on the phone at least twice a week with the cardiologist or family doctor. Medications can have strange effects and in the beginning it can be a lot of trial and error. Just don't give up and try to stay calm. Hope this morning is better. Praying for you.

Because this has to do with the heart, I think they are trying to play it safe. My son had a procedure back in August and the doctor was told that he had POTS. His heart rate drop down to 25 during the procedure. Kinda of scary. If you feel confident staying with your team of doctors, I might get the information for them but if you think they are blowing you off, that's a different story. They should be concerned by the information you have given them and request the records themselves. Otherwise, I might find another team of doctors that would be concerned with my current health conditions and how these might affect the outcome of your procedure. When you lack trust and confidence in a doctor, it's time to find someone else.

I've heard for a normal person without POTS it's 2-3 days for every bedridden day. I think you really just have to listen to your body and if you are trying to exercise, do it sitting down.

The first time our son went down on us was Labor Day 2011. He was unable to walk until late December 2011. He was taken to MAYO in December 2011 and was diagnosised with POTS. MAYO titered a meds he was on to help with nerve pain, but he went down hill . Our guess is the meds caused the problem. He was bedridden for almost 4 months January 2012-April 2012. Started him on an Amino acid supplement and he was able to sit up 4 weeks later. Since he has been on the amino acid he has always been able to set up. The neurologist thought is was a fluke and had us take him off of it. Guess not because he went down on us after a week and could not sit up, or raise up. Put him back on supplement and three weeks later he stands up. The neurologist has told me not to take him off the supplement ever again. This past summer he start shaking and having tremors from waist down. Our neurologist has told us this is an involuntary muscle movement. She will not diagnoise him with turetts since this all started after the pots diag made December 2011. His last blood test show very low levels in dopamine and seratoin. We have been trying since the first of April to get these levels to raise up with amino acid supplement. Had another test last month and only seratoin came up 5 points ( he is now at 21) starting range on test 81 and his dopimine is still unmeasurable. Our cardiologist and neurologist think this may have to do with a defiency in his body. So he has been put on a shake thast loaded with amino acids. My son always does his exercises in the morning because sometimes he is shaking so bad in the afternoon, he is unable to walk or exercise. Just wondering if other POTS patients go through any of this. My son goes to pt twice a week and he is making progress. I am assuming the longer the muscles have not been used, the longer it takes to get them built up. EDS has been ruled out but concerned about MCAS.

Welcome! Has anyone checked iron and vitamin D levels yet? My son has POTS and has had sleeping issues. So many things in our system seems to get messed up with POTS. If your body is deficient, it can't make melatonin. This is a hormone that your body makes naturally and helps you fall alseep. Your body has to be able to asorb amino acids to help make this hormone.

I'm so sorry to hear about your rough night. Hope you get some answers soon and hope your daughter is feeling better.

Thanks for sharing the article about MCAD. I will also look at the powerpoint. Do patients with MCAS get better on medications or is this a life long illness to deal with?

My son experiences this in his legs. Our cardiologist thinks this may be happening because of low dopamine levels.My son was recently tested for this level and it has still not come up. Might want to check your dopamine levels. It's a fasting blood test.

My son is doing specific exercises to strengthen his core muscles. His goal is to be able to go back to school for a half a day next year. He is able to sit up on a posture ball for about 25 minutes before his back muscles start hurting. He is able to walk and stand around 25 minutes before his legs start shaking and back starts hurting. I know he is making progress but is seems so slow. Is this normal?

I don't have POTS myself but have a son that was diagnoised last December by the MAYO Clinic. My son is 12 and his symptoms got much worse this past summer. I had to quit my teaching job because my son was not able to attend public school. This was a big change for our whole family. As a parent, I want the best for my son but there are days I just wish I could have my normal life back.