looneymom

Glad you found us. Keep looking for a doctor that can help you and never give up. POTS is strange and unpredictable. Sorry it has taken you so long to find out about POTS. I am a parent of a son that got exteremly sick when he was 10 and it took a year to get to MAYO to figure out it was POTS. As an adult, your doctors should take you more seriously. Hang in there and hopefully you will find a doctor that can help you.

Try some herbal tea. I use the sleepy time. It seems to help. I also like the ginger and peppermint tea. These help with the nausa. I also keep a container of peppermint candy around.

Just wondering if you feel worse after a weather change. In Oklahoma this last weekend, the temperatures dropped and it was rainy. Also had a hard freeze on Monday. My son started shaking worse and he complains that he hurts all over. The same thing happened this last summer when it turned really hot. If the weather changes affect you, what seems to make you feel better?

Hang in there. It took three letters from three different doctors for a referral to MAYO. Started process in August 2011 and saw doctor in December of 2011. If you are not dying, the medical field does not deem it necessary to see you. If your gp can refer you to the specialist, you might be able to get in quicker.

Way to go! Be tough and tell them what you need. It's great that you will have an have advocate and that will really help get the ball rolling for you. Have fun and enjoy the school year.

My son was bedridden 4 months. He could not walk, crawl, or sit up on his own. I had to use a lift to move him. Eventually I was loaned a wheel chair that tilted back so I could get him to the doctor. When he was at his worst, our cardiologist did run test to check seratomin and dopamine levels. These levels were very low. I did research and checked with our cardiologist about giving him an amino acid supplement. He takes the GNC Amino 1000. Three weeks later he sat up. I thought this was a fluk but I told the neurologist what happened and she had me take him off of them for a week. Twenty-four hours later, he can't sit up. Six days later he has a spinal tap and he does not feel thing because she gives him a local. She allows us to stay will our son during the whole procedure and keeps asking questions about other symptoms that have showed up. After the procedure that day, I was told to start my son back on the amino supplement. Twelve days later, he sits up again and he is also able to stand. During the time he was bedridden, we always had a physical therapist coming 3 times a week and Occupational therapist 2 times a week. When he was a his worse, the therapist were actually having to lift his legs and arms to make them move to keep the muscle tone going. This was a very long haul but since he has been on the aminos, he has always been able to sit up and use the wheel chair. So far taking the amino supplements and a few other prescriptions along with exerise, he has been able to walk as long as his shaking does not start. This last summer, he starting shaking from waist down. So the next step is to find out how to make this symptom go away.

I think I might get a second opinion. My son has had two tilt table test. Before the second test he had already been taking midodrine and fludrocortinsone and he still failed the test. He has to be careful doing exercise and it has taken him awhile to build up to 25 minutes of stationary bike riding. If you can afford to see a POTS specialist, that would be great. It would might put your mind at ease. Good luck and hang in there.

Hi and welcome aboard. I am almost in the same boat you are. I am the parent of a 12 year old boy that has POTS. We live in Oklahoma and nobody knows too much about POTS. We have found a couple of doctors that are supportive and have been researching to figure out where to send my son for some more evaluations. Since he has been diagnoised, other symptoms have started. This is a great place to ask questions and everybody is very supportive.

First of all, you have the right to an education. I am a former special education teacher and know this by law. In your school district, there should be a special education director or someone who is in charge of all the Individualized Education Plans (IEP). My son has one and the catagory he is listed under is Other Health Impairment. My son does not have a cognitive impairment, although he does have brain fog when he gets very tired and then he does have to rest. Due to uncontrolled shaking, fatigue, occasional vocal tics, my husband and I decided to try K12 virtual schools. This is free public education online. Virgina is the hub for this online schooling. They set everything up and my son is required to do 30 hours a week Monday-Sunday. You choose when you want to work on school material and what classes you want to take. My son is gifted but I did not choose to put him into any of those classes because I did not want to stress him out. I know you want a social life and school plays a big part. If you want to go back to school, it can be done. However you need a doctor that can provide medical documentation. MAYO wrote a letter on our son's behalf. We also have a cardiologist and neurologist that wrote up medical conditions on Medical report forms supplied by his special education teacher. Our son was on a homebound situation last school year and the school sent out a teacher 3 times a week with his work to work with him for an hour. The rest of the workload was left up to me to teach it to him. However, my son did not get too much work from his math teacher so I am concerned about his math skills. Because of other symptoms that developed over the summer, my husband and I thought its was best to go to virtual school in Oklahoma. He just started and he loves it. Hang in there and find out who your special education director is , so you can get the education you deserve. Your mom or dad will need to sign off on the Individualized Educational Plan. This plan is based on your educational needs and makes the school accountable for your education. You as a student have the right to attend your IEP meetings. Education is important and POTS is just coming along for the ride.

Hi Puppylove. This happens to my son sometimes when he wakes up in the mornings. Other days he has no symptoms at all and then there are days he will just start shaking from the waist down and have to use his wheel chair. Our neurologist has said this is some type of movement disorder.She is trying to get us into the Cleveland Clinic to get a further workup. My son was diagnosed at MAYO with POTS but this symptom started six months later. I am searching for more answers and hope that I can get him to the right doctor. Hope this helps.

He takes the GNC Amino 1000 supplement. Our neurologist found out from the spinal tap that he had defiencies in the precursers to amino acids and sent us on to a genetic doctor.

Hang in there! I have two kids and I remember this croup stuff. I have 12 year old that still gets a touch of this about twice a year. MAYO calls it spasmatic croup. Rest when the kids do so you don't over do it. Praying for you.

Rest up and slow down as much as you can. Exercise can help balance the stress level. Just don't over do it. Let familyor friends help with last minute wedding details.

My son takes this supplement because of symptoms that appeared about 3 months after he was diagnoised. After he was diagnoised with Pots, MAYO suggested that he take salt pills. He did this and gradually was able to start walking and BP started stablizing. My son was also taking Gabapentin to help with nerve pain. The gaba was being gradually increased every week by a pain management doctor. However, when my son was almost at the highest does, my husband and I began to see changes in his ability to be able to bike, walk, stand and sit up. All the gains that our son had made, seem to disappear within a couple of weeks. We took him to our GP and he concluded that it must have been the meds. Our GP thought that maybe when the meds. got out of his system that his body would stablize and he would start coming up again. But that did not happen, he continued to get worse and started shaking and rolling constantly. Our cardiologist order blood work to check for serotonin and dopamine levels. Serotonin level was 14( starting range for test was 85) and dopamine level could not be determine. I started do some research on the internet to see how these levels could be raised up. I found several articles on amino acids and asked our cardiologist if it would be safe to put him on an amino acid supplement. Our cardiologist said to go ahead and see if it would help. He also tells me that he will get us in to see a new neurologist to deal with this problem. Three weeks later, our son sits up again and stops rolling. The next week we see the new neurologist and I tell her what happened. She tells me to take him off the amino supplement, so she can do a spinal tap to check for other amino defiencies. The spinal tap is set up for next week. So I take my son off the amino supplement and 48 hours later, his body is like jello again. He cannot set up and he starts shaking and rolling again. We get through the spinal tap and I put him back on his amino supplement. Twelve days later, he sits up again but also stands up for short periods of time. Our neurologist has told us not to take him this supplement. Our son has always been able to sit up since he takes the amino acid supplement. Has anyone else had this type problem?

Hi Pam. Just try to keep smiling even through the tough days. I had to quit my teaching job so I could take care of my 12 year old son who has pots. Like you, he was beridden for the first five months after his diagnosis from MAYO. My husband and I still don't understand all of the strange symptoms that have appeared since he was diagnosised. We take it one day at a time and try and keep our thoughts positive. I know you must miss working. Is there a way you could work from you home and maybe set up a few hours a day? POTS seems to steal your life away. My whole family wonders if it will ever be normal around our house again. The best advice I can give you is to listen to your body and realize your limits. Energy and stamina will come if you don't overdo it. My son and I have learned and are still learning a lot of lessons the hard way. Hang in there. Praying for you.

Thanks Soskis. My husband and I get the same feeling and so does the cardiologist and neurologist. Our son has also been diagnosised with vocal cord difunction and vocal tic before he was diagnosised with POTS. However he does have many symptoms of POTS and has failed 2 tilt table test. Our doctors are trying to figure out where to send him next. If you would like to read more about our medical journey, I started a blog survivingpots.com. I have many friends, family, church members, and former students that want to know how things are going. I had to quit my teaching job since my son's symptoms got much worse this last summer.

It sound like sleep is a very important issue. I am a teacher myself but I have had to quit my job this school year. I had to quit because my son has POTS. Some POTS patients just need more sleep. My son is 12 and goes to bed at 9 but he does not always fall asleep by 9:30. For awhile, he was waking up several times through the night. On those days, he was having to sleep in until 9 or 10 in the morning. Is it possible that you could teach part-time until you are able to make the adjustment to this new teaching job? When my son was at Mayo, they told us to make sure he went to bed a the same time every night. However if he slept through for 9, 10, or 11 hours his body needs it. My advice is to listen to your body and talk to your employer about your teaching assignment. Good luck and have good year of teaching!

When my son went to Mayo, he was told that exercise was the key to getting better. He is just now able to walk 10 minutes but it has been a constant battle to be able to do it. He was diagnoised in December 2011 and he is only 12. He wants to play basketball again. He can tell when his body is off and so can I. It can be discouraging but on days when he is really off he tries to do at least 5 minutes of walking. He may have to do that a few days before his body bounces back. He has learned if he pushes too hard too fast, he may become deconditioned pretty quickly. I have had to help him learn to focus on how his body feels. This has been a real adjustment for him and probably is for anyone who had a normal life before POTS struck.

My son takes Thermotabs. They are a buffered salt supplement and he also has to take florinef.

My son had been sick for almost 7 months before he saw a headache specialist. This doctor did the poor man's tilt table test on our son and suggested that we get an official tilt table test done. A cardiologist usually runs this test but getting into one can sometimes be a problem. Hopefully your doctor will take your concerns serious and can get you in to see one soon.

At first, my husband and I could not tell that it was making much of a difference with our son. His blood pressure would fall out with just the slightest amount of activity. When the dosage was doubled, his blood pressure was more constant and did not fall out as much. He takes 40mg three times a day.

My son is a very slow walker. A couple of weeks ago, he was able to walk on the slowest speed on the treadmill but this week it has been impossible. I'm wondering if this has to do with fatigue and stress issues. He just started school this week.

Thanks Angela. I really don't understand the adrenal stuff yet. My son does take clozenpam at night to help him sleep. I will ask his neurologist to see about increasing his dosage. Maybe it would help him. He is just 12, so at least I don't have to worry about teaching him how to drive yet.

My son takes a vitamin d supplement because his is way too low. He has been retested but it only came about 5 points. He takes the D3. Our GP told us to up the dosage. So we did that and his headache pain level went from an 8 to a( 5 out of 10 on a pain level scale).