looneymom

Welcome to the forum. I have a son that shakes and has tremors from the waist down. His feet usually just shake. Our cardiologist has tried him on some medication but it has not helped either. My son has had these symptoms for awhile and our neurologist has said that it is also involuntary. None of our doctors have figured out what's causing it but they say its part of my son's POTS condition.

It's ok to be forgetful and have brain fog with POTS/OH. Besides that, you're to young to have all those symptoms. I know you must be frustrated and scared because you never know what new symptom is going to show up. Keep researching symptoms and give the information to your doctor. Hopefully you have found a doctor you trust and have confidence in. A good doctor should be willing to rule out things that you research. Having a good nurse line also helps. I've used it twice today with my son. He's having a really bad POTS day. Hang in there. It's got to get better.

My son was never taken off his allergy medicines before any of his testing. He had 2 ttt and they were positive both times. MAYO also did blood work but they did take my son off midodrine and florinife 48 hours before ttt.

My son has the same problem. I did not use the wood stove this last winter to heat the house. If I keep the house no warmer than 73 degrees, he does better. This next week it is suppose to warm up in Oklahoma. If he goes outside for morning sunshine stroll in the wheelchair, we'll be taking a bottle of gatoraide with us.

My son takes midodrine and I do monitor his blood pressure daily because our cardiologist wants his weekly readings. My son is 13 and the cardiologist wants to see his blood pressure at least at 110/70. My son cannot function without midodrine. Could your flare possible have to do with warmer weather? Have you spent more time outside? Just wondering if your electrolyte balance could have been up set by the heat or even a stomach virus?

Sorry Racer about your bad experience. Sad to say but it's probably time to find another doctor. Don't have any experience with your symptoms but it sure does not sound like an enjoyable situation by any means. Hope your symptoms calm down very soon. Can you tolerate milk? A protein shake might help with weight problems and nutrition. GNC has come out with a new protein shake that is loaded with vitamins and protein.

For mito diseases a neurologist or genetic doctor can run the test. My son was checked for this and it was negative. For mast cell disease, Dr. Afrin in the USA is tops in his field. However, if you can find a hematologist (blood doctor) or a true immunologist, they should be able to check for mast cell. Have you been to see a genetic doctor?

In the beginning my son was drinking 4-6 liters of water or gatoraide a day. For him, this was just too much and he drinks 2-3 liters a day besides 3-4 cups of milk. In many of Dr. Grubbs articles, he suggest 2 liters a day. I really think it depends on the person. On warmer days or when my son is having a really bad day, he tends to drink more. This week has been pretty rough and there have been at least a couple of days he has drank 5 liters. After reading many articles, I think the least amount you might want to drink is 2 liters.

Have you found a good doctor to help you with your medical condition. Some doctors just don't want to go the extra mile. That was my problem in the very beginning with my son. I can understand your frustration of wanting to be able to get up and go. My son has been bound to a wheel chair since January. Are you able to work with any therapist like occupational or physical? When my son was at his worse, our family doctor called home health care to come out. Our insurance picked this up and he was able to work with a physical and occupational therapist. This helped him become more functional. I had to concentrate on things that my son could do. It was a very slow process after he went totally down (bedridden). Concentrate on yourself and take one day at a time. Having a good support system helps if you have children to take care of. Hang in there and concentrate on what you can do to make yourself better.

I know and understand the frustration. Have you had the panel for AAG ran yet? That is the next test for my son. Are you on any medications that could be causing problems? We are in the process of weaning my son off another medication (florinif) to see it it's causing his symptoms to be worse. Autoimmune conditions are going to be checked after AAG. I wish I had answers for you and everybody else that is suffering. You keep hoping that something will show up on a test and give you a clue to the underlying cause of your health condition. Do you use a wheelchair to help with mobility? I know that you miss being able to get around and do things with your kids. It would allow you some more freedom, like going to the zoo or taking them to the mall. However, I also realize if you do not feel good, in pain or just too tired, its hard to get out and do something with anyone. Hope your next doctors appointment goes well and don't be shy about asking for test. I bring research studies about test to my son's doctors appointments.

Have they checked for any autoimmune issues or virus running loose in the system? It sounds like an area I would want to explore if the amoxicillin helped. Might want to look at old post on lymes disease. I know that topic has been brought up on the forum.

Kit Load the next page of topics. It's the post about Autoimmune Autonomic Dystonia testing. This test has just become available this year. MAYO clinic used it in studies. It checks for antibodies that cause AAG and other things. If you go back a few more pages there are some post about AAG. My son has been on the normal POTS medications for over a year but he does not seem to be able to make progress with medications and physical therapy. Good luck with your appointment and I hope you get some answers.

My son has been on it for a month. The first two weeks I thought it was helping a little, however his shaking has gotten much worse this last week. His heart rate is also much lower. This week some of his heart rate readings were in the upper 40's. My son saw his cardiologist just yesterday and was concerned about the low heart rate readings. However, the plus side is my son is not having any tachycardia. Instead of pulling my son off some of his clonidine, he has decided to try weaning him off his fludrocortisone. So today he took half of his dosage and his heart rate stayed up better. The doctor and I are really hoping my son has outgrown the use of fludrocortisone. Don't know if the clonidine will work any better for him, time will tell. He is also on 40 mg of midodrine 3 times a day. Two weeks ago, the doctor tried to cut this dosage in half. My son's blood pressure went way too low, he cannot function without midodrine. The are the three main prescriptions my son is on for his POTS at this time. My son may have hyperpots but due to his health condition, this testing cannot be done. He takes 1mg of clonidine mid-morning and 2 mg before bed. I'm hoping to see more improvement this next week with the clonidine. If I see improvement, I'll be sure to post.

I don't know if there is a connection or not but my son has trouble with a hoarse voice. He never had this trouble until he got sick with a virus and was then diagnosed with POTS. However, my son was diagnosed with vocal cord dysfunction and a vocal tic before he got sick with POTS. He does not have trouble with the vocal cord dysfunction because he has been to a speech pathologist. She taught him breathing exercise to make the vocal cord dysfunction stop. So he no longer has trouble making it stop. If his vocal tic gets started, it makes his throat very sore. However, his hoarse voice comes and goes. so I'm not sure if it's caused by the vocal tic or a weak nerve or muscle in neck.

I agree with you Kat. My son has too many symptoms, but all of his symptoms came after the POTS diagnosis. My son will be having more blood work ran this next week to see if his POTS is being caused by AAG.

This is part of it. When they get you on the right medications for blood pressure, it will get better. My son's blood pressures were all over the place and they had to be adjusted several times. He takes midodrine and cannot get along without it. Hang in there and good luck with your appointment.

Keep it coming. My son will see the cardiologist tomorrow. I do know that my son has trouble with low blood pressure. About two weeks ago the cardiologist cut my son's midodrine down to half. He could not maintain. Needless to say he's back on his regular dose. We need answers. I have gone back on the dinet forum to look at old post on immune system testing. I'm on page 2 still but worth the reading. Thanks for all the response.

What test are used to determine if the immune system is not working properly? I know this is a loaded question. I know that the basic cbc panel is ran but I'm asking about more specific test that could point toward this problem. When my son visited our family doctor the other day, he asked if he was going to be seen by an immunologist. I do know that our cardiologist is checking in to that but I was wondering if there were some test that could be run before we headed in this direction. As I have said before our cardiologist looks at everything I send his way. We are leaving no stone unturned at this point. The doctors think that my son should have already been able to at least get back on his feet and walk by now. So if anyone knows of an unusual underlying cause for POTS started by an immune system problem, please clue me in. My son's shaking and tremors have come back with vengeance.

Sorry you are still feeling bad. When do you go for test? Hopefully it's not too much longer. Waiting on test and doctor's appointment is no fun. Hang in there!

If my son sits up for more than 30 minutes, then his feet, ankles, and legs start pooling. They turn a bright red/bluish color. He also started pooling in his hands about 2 months ago. The occupational therapist noticed this and gave him compression gloves to wear at night. No more pooling in hands now. I will be talking to my son's cardiologist about compression clothing because I'm really not sure what to buy. Good luck with your test. My son has went through 2 tilt table test. Yes, the ttt is worth it. Get through your test first and then your doctor can probably give you a better ideal about what type of compression attire you may need.

As my son would say, " Close your eyes so you don't see stars". He's not very good with blood work in more. Happy that you will be able to get the test ran. I know this gives you hope and brings you closer to knowing what your underlying cause is.

The harder you have to concentrate, sometimes the worse it gets. Are you tweaking any of your medications? I ask this because the doctor was pulling my son off some of his towards the end of the school year. It was awful! He had to have more help then normal to write a 3 paragraph essay.He could not hardly stay focused. I'm already concerned about next school year. Thank goodness summer vacation is here.

With my son, I'm pretty sure it started with a virus. However, the symptoms developed along the way. It was 9 months before, he went totally down and unable to walk. The fatigue and headache came first. He was tested 3 times for mono but it never showed up. He would sleep for 16 hours a day.

In the very beginning my son has some breathing problems. When he was in the hospital, they did that one test ( to blow into the tube). He failed it, but they said it was lack of effort. My husband and I know different . What helped my son the most was being in a recliner. When he gets sick a humidifier helps and so does raising the head of his bed a few inches. However, there are some nights that he sleeps in the recliner, because it seems to help the most. You do what you have to in order to make your loved one more comfortable.

I have really bad outdoor allergies. I tried the shots to desensitize my body, but it made me worse. My family and I live in the country. I do use an air purifier in the living room and this help quit a bit. However, we also have local honey. My husband loves the outdoors and decided a few years ago to put out a couple of bee hives on our place. I have always like honey. It has made a huge difference. However, I started by licking off 1/8 of teaspoon. I built up gradually and my outdoor allergies have improved so much. I am able to go outside more often.