looneymom

Our cardiologist is trying to find the cause of my son's POTS. Since all of the first line of medicines have been used to treat his POTS condition, and my son has not responded much to them. Our cardiologist suspects an autoimmune problem or Hyper POTS. If you suspect an underlying cause, talk to your doctor.

Courtney hang in there and welcome to the forum. We are a friendly bunch and just keep asking questions. It sounds like you need to find a specialist that deals with POTS. There is a physicians list on the site, that may be of some help. Sorry you are going through this. Keep us posted.

Issie, you are right about needing more answers. I wish there was a way of suppressing it without medication. POTS to me seems like a chronic illness that brings new symptoms along the way. So your body is going to have to react in some way. If you are feeling stressed all the time, then you body may keep producing the NE. In return, this will cause a lot more symptoms like a headache, excessive sweating, flushing, and tremors.

Thank you everyone for responding as you have. It's been so helpful. I just wish all of our doctors could get it figured what type of POTS we have.

Keep a close watch on her. I've read that POTS can start at an earlier age in females. Because you already have this condition, I would think this might be a possibility. I hope not but talk to your doctors about what you are seeing.

Alex is Hyper Pots the same as hyper adrenergic POTS. My son's autonomic reflex screen at MAYO was abnormal. In the conclusion it said hyper adrenergic states may be present. I'm really trying to understand exactly what this means.

Kris, just wondering what SNRI were you on. You can p/m if not comfortable answering. Was it causing a reaction with other medications? Sometimes its hard for me to determine if a medication is causing a side effect because of all the strange symptoms associated with POTS.

That's ok Bebe. I have discussed this type of testing with my son's cardiologist. However, with his current condition, my son would have to be put on a tilt table to draw blood. They draw the blood first while lying down and then you also have to stand for at least 10 minutes so they can draw blood again. Because his symptoms are so bad right now, the cardiologist does not want to do this test. He is afraid it might cause his symptoms to become worse especially because he has to be in an upright position for at least 10 minutes. My son most likely would pass out. The cardiologist suspects high NE levels. Thursday night my son started taking Clonidine. Some of his symptoms are better. The cardiologist said that I could notice some improvement in 48 hours.

I have learned that dopamine converts to norepinephrine. In a stressful situation the body will start to do this (as in having a double round of flu). I'm wondering if this is the reason why my son has no dopamine. Norepinephrine also sends signals to the nerves. If a person has too much of this, then too many signals are going out to the nerves. I know this chemical is found in the brain and I'm beginning to wonder if my son has too much of it. He does have flushing and sweats bad during the night. I also think the adrenal glands are involved in producing norepinephrine. I'll keep researching and share what I find. Hope others can share their experiences with us.

Thank you. I missed this one.

I've been reading about norepinephrine but I am confused about symptoms for high levels. Just wondering what symptoms that you deal with from day to day. Is a severe headache and sensitivity to touch a symptom?

Thanks for posting this. My son has been checked for lyme. The cardiologist is really thinking it's autoimmune and he is running more blood work to look at some other things.

Because my son's symptoms were so severe, this was one of the first things his neurologist checked for. It's a genetic test that takes 6 to 8 weeks to get back. Thank goodness the results were negative.

Lejones 1

I have seen this tachycardia happen two different ways. Yesterday, my son just was having a bad day. It was stormy all day. So we did not get to go outside. He sat in the recliner most of the day with feet up. Late in the afternoon, the tachycardia started showing up again on the blood pressure readings.

The other day, we went outside around 4pm for about 15 minutes in wheelchair. He came back in and sat down in recliner with feet up. About 7pm I took his blood pressure and the tachycardia showed up again.

The other thing that crossed my mind was that he has now been off his clonazepam for 12 days.

Maybe coming off the clonazepam is causing this change. Has this happened to anyone else?

I understand that tachycardia is a high heart rate but how high? I thought this normally happened after you had been standing up for a little while. My son is not able to stand up. This last week, he got his new powered wheelchair, so we have been going outside more on pretty, sunny days. Would this kind of activity cause tachycardia? I have always taken his blood pressure when he's sitting down. Would this type of activity cause tachycardia to show up 3 or 4 hours later in a blood pressure/heart rate reading?

I send in my son's blood pressure and heart rates to the cardiologist weekly. He asked about his activity level. I am trying to help my son get as active as he can tolerate. Does over doing it, make this problem worse? The cardiologist has not told us to stop going outside. Just nervous and wondering if this symptom gets worse with more activity.

Aimes, I think everyone on this forum would like a magic pill to make all these symptoms go away. So sorry you are having to deal with new symptoms.

Low dopamine levels can also cause problems with twitching, shaking, and tremors.

What is the catecholamine test? Is it a blood or urine test? Our cardiologist is suspecting my son may have hyper pots. Testing has been discussed, but due to his current condition, the testing might make him worse. Is this a test that is performed while on the tilt table?

My son had trouble with low iron but his B12 was on the high side. When you supplement with iron, just remember not to take it with milk. Calcium interferes with its absorption.

My son has been using magnesium citrate for awhile. Its the only form that seems to absorb into his system. Its 250 mg per capsule. Talk to your doctor about a safe dosage that is safe for you to take.

K&ajsmom thanks for posting this question. My son has been having troubles getting to sleep and staying asleep since having the flu. My son is going to start using this medication tonight. The cardiologist has told me basically the same pros and cons as other people have stated in their post.

Its a POTS symptom. If taking a magnesium supplement, be sure to get something that will absorb into your system. Your doctor should be able to help with that and might be willing to do a blood test to check for your levels. That would be helpful to know.

This is a good warning for all of us. My son had a wild ride with general anesthesia about 9 months ago. So heed the warning. Glad you are feeling so much better.

Welcome to the forum Kooky. I agree with the post above. If you strongly suspect this as your problem, try to find a specialist to help. Medication can be tricky and confusing.

Sorry that you feel so bad. Fatigue was one of my son's worst symptoms in the beginning. He still has problems but it is not quite as severe. Something that helped him was a protein shake that contained amino acids. I buy this shake for him at the GNC store. Be sure to keep your fluids up to avoid dehydration.

Spinner made some really good points in the last post. Take care of yourself and hopefully you will feel better soon.

My son never had this problem until he had the flu back in January. It happens to him when he is typing on a key board. His hand from wrist down also changes to a different color. My son goes to occupational therapy and they gave him a pair of compression gloves to wear at night. This has been a big help.

I'm so glad you posted this. I'm hopeful that others will share their experiences while on this medicine. The cardiologist is considering this medicine for my son after he is off some of his other medicines. He has told me it will help with sleep issues and can lower blood pressure. Like you, I would like to hear some of the pros and cons of the medicine.

I would really like to know if this medicine will help with tremors and twitching?

Try to correct your B levels and Iron levels first. My son's levels are up, but his last test showed no dopamine and serotonin were present in his body. Our cardiologist is pretty sure this is the connection with my son's twitching, tremors, and shaking. He has been talking to some doctors at Vanderbilt about some specialized blood work in this area. Our cardiologist is wanting to draw the blood for the test and send it to them. Hopefully this will work out. My son is still not able to stand or walk due to the shaking from waist down. I truly do believe this is a POTS symptom and I've heard is not a common symptom for a young kid with POTS. I just hope doctors can figure out how to make this symptom go away. My son has been wheelchair bound since January.