looneymom

If this is POTS related, your cardiologist should be able to order those test. The only problem is that he may not know which test to order. You might could do some leg work for him there. Hopefully he won't be offended. In the past, when I have asked about certain test, I try to find a study that deals with the test. I can email this informatio to the cardiologist and he checks it out. Cardiologist are not POTS specialist, but it might help him to know what you are wanting tested. I know this can be a frustrating experience but hopfully you have found a doctor that is willing to look at underlying causes that may be causing your POTS.

Lynnie22, Keep us posted on how you do with this medicine. It is very frustrating trying to find medicines that will work for your medical condition. A symptom that my son had last summer went away and now has come back since he had the flu. Thought the symptom was related to heat intolerance but it seems to be a true POTS symptom for him. Sorry that symptoms seem to getting worse but keep track of them and let your doctor know. Doctors can't help with treatment unless they know what is going on. It can be very scary but don't give up on finding a treatment that can help you function better.

Angela, Yes that is the medicine he is being weaned off . This medicine seems to be making him exteremly tired during the day time. He was only on 1mg to begin with. Since he has been off it for a week, he is so much more alert. He is even beginning to smile and laugh again. However, he is still waking up to or three times during the night as before. He was having tremors in his arms and upper body but this has stopped. The doctors are wondering if his body has built up an intolerance to this medicine.

Exercise really does help if you can manage it. My son caught the flu in January. However, as soon as he was well enough, he started back with physical therapy. The amazing thing was that he had not lost any muscle strength in his legs but he lost strength in his shoulder area. He still has trouble raising his arms straight up. He can sit up but starts shaking after he gets to a standing position. The cardiologist, physcial therapist and I have come to the conclusion that this is a POTS symptom and probably has nothing to do with muscle strength. Even with this symptom, my son continues to do exercises so he maintains muscle strength in legs and as much as possible in core. However, he can't do bridges because it makes the shaking much worse. My advice to anyone with POTS is to exercies if possible. Our next step, is to try a new medication to manage this last symptom. He has been off clonsapam for a week but have to wait two more weeks to try a new medication. My son was an active healthy 10 year old boy before this POTS beast came into his life. Deconditioning is not what causes POTS. Hope our medical schools are doing a better job of educationing our future doctors.

I hope that MAYO will stop telling the parents of teenagers that its just deconditioning. This parent knows different. Exercise does help if the body will tolerate it. Being able to stay well and finding the right medicines to help control symptoms also helps. Our cardiologist has told us that finding the right combination of therapies and medicines may be a long haul but worth the effort. Deconditioning is not the cause of POTS.

If the medicines help you function throughout your day, why would you not want to take them? If you are happy with your level of functioning, then you might not want to try any new medications out there for POTS. This is understandable. So if your your current treatment works, stick with it. If you want to go off something, talk to your doctor first. Going off some medicines too quickly can cause some really strange side effects.

I agree with the above answers. Ask for the test. The last time I took my son into our family doctor, he threw a fit about running some of the test. However, I had articles that backed up my theories, so he decided to run some of them, which was better than none. It's best if you can find a doctor who really wants to get to the bottom of the problem. Don't give up, there is a doctor that will be able to help you. I have fired several doctors because they said it was behavior and anxiety. Our cardioloigist has been the most helpful. He has several pots patients, but our son seems to be his worst. He suspects an underlying autoimmune problem that's causing POTS. If you suspect this type of problem, I would suggest you discuss this with your doctor. If he is not comfortable with running the test, then ask for a referral. I have ran into this problem with our family doctor. You are not crazy, stand your ground with your doctor! Or find another doctor that cares about your medical needs.

You might want to try slow release iron tablets. You can find these at Walmart. The iron is released slowly throughout the day. When I was a runner, many years ago, I had this problem in high school. I would get sick taking a regular iron pill or even the liquid form. Iron will also cause you to be more hungry.

Hang in there s-pot. Just when you think you have seen it all, another symptom appears. Our cardioloist has used all the first line of meds for POTS with my son. However, they don't seem to be keeping his symptoms under control. So we are in the process of weaning off meds. to try new ones. Also having other blood test ran to check for autoimmune problems. If you suspect something is causing your POTS, the best thing you can do is find the articles to support your theory and take them to a doctor who is interesting in looking at other causes of your POTS.

My son takes florinef with midodrine. He takes the florinef in the morning only and I never noticed it making him tired. Last night was his first night being totally off the clonsapam. I thought I would see more side effects but so far so good. He was much more alert today.

KCmom, Have you talked to the doctor about running the blood test? From what I understand, your family physican can even order this one. The cardiologist looked at my son's last mri and decided to have the blood test ran. If this shows up positive, the cardiologist said this would change my son's POTS treatment.

Dave, you will get better. It just takes time to find the right medicines and therapies that your body will respond to best. Keep looking for answers and for doctors that will help you get better.

So proud and happy for him and the family! Way to go!

It will show up in a MRI. My son has complained of lower back pain for awhile. He had a mri about two years ago that suggested this possibility. However, no doctor took it very serously. He was just 11 then and complained he hurt everywhere. Right now, he is currently being weaned off clonazepam. Since doing this, his back pain is worse to the point, he is rocking back and forth. If you can get a doctor to help with the pain, good for you. There some natural supplements posted for neuropathy on the forum. Tumeric and ginger. Hope you get some answers soon.

So glad this was posted. The cardiologist is wanting to put my son Clonidine.

What is the difference between these two medications? Our cardiologist wants to try my son on the the Clonidine after he is weaned off some of his other medicines. He has mentioned both of these medications to me. I will try to find the post.

Welcome to the forum. I have a son that was diagnosied with POTS when he was 11. He is getting ready to turn 13.. I'm glad you were able to get to the Cleveland Clinic. They should be able to help you and get you started on some medicines that may help your condition. Feel free to ask questions and look at articles that have been posted.

My son was put on this medication two years ago for a vocal tic (0.5 mg once a day). It worked great. He was kept on this medicine after he was diagnoised with POTS. However last summer his vocal tic got worse and he was put on Intuniv 1mg and eventally raised to 2 mg twice a day. He was taken off clonazepam for a short while but was but back on it because he had more trouble with the tic at night and could not fall asleep. He started taking 2 (0.5 mg) tablets at night and he was able to fall asleep again. His tic also went away. This last January he caught the flu and he started having problems getting to sleep and staying asleep. So he was put on 100mg of trazodone and 75mg of amitriptyline for pain. He was able to fall asleep but was still tossing and waking up several times in the night. He complained that he was tired when he got up in the morning and usually had circles under his eyes by noon. He had a sleep study in March. At this time he is down to taking 1/2 of a 0.5 tablet of clonazepam. My son seems to be more alert this morning. Will keep posting as weaning off continues. Hope this helps someone.

I finally got the results back on my son's sleep study test. He was borderline but a machine was not recomended for him. They put a machine on him during the sleep study and it made his symptoms worse. The sleep disorder doctor visited with my son's neurologist about the night time medicines he was on and suggested that he be weaned off the clonazepam. Come to find out, Clonazepam can cause daytime sleepiness if used with other medicines. So it is in our best interest to wean him off this medicine if possible. Since I have cut back on the medicine, my son is not able to stand up at all. The neurologist says this is a side effect and it will go away. I hope it does not get any worse than this. Just wondering what other reactions I might could expect?

The cardiologist and I have had a discussion on L-Tyrosine. The shake mix that I get from GNC has this amino acid plus the other essentials ones. The products is called Amplified Wheybolic Extreme 60. From what I understand, you must have the other essential aminos before it can be asorbed. This shake has helped my son with fatigue issues. However, his body does not seem to be able to keep enough serotinon around, so the doctor has upped his Zoloft.

Puppylove, don't be scared. They should do an evaluation to figure out your weaknesses and strengths. When I took my son to his first appointment, they had never heard of it. So I took them the latest information I could find on POTS. If they work with MS and CFS patients, they will even have a better clue of how to help you. We have been with our physical therapist for over a year and she is beginning to understand how unpredictable POTS is for my son. A physcial therapist basically shows you specific exercises to do to keep your leg, arm, and core muscles strong.

I use Nutiva Organic Extra Virgin Coconut Oil. I bought it on sale at GNC this month. To melt it, I put the quanity I want in a glass bowl and then sit this glass bowl inside another glass bowl filled with hot water. If you microwave it, you might destroy its nutrients. My sons and I like spinach, orange, banana, pinapple and blueberries. I blend this first and then add the coconut oil. If not sweet enough, I add stevia.

Keep writing. You've got talent. It made my son and I laugh.

If it's not sweet enough try a packet of stevia. Sometimes the fruit looks good but its not as sweet as it looks. I have also started melting coconut oil and puting it in our drink. Don't melt in microwave, it will destroy the nutrient content. Put in glass bowl and set glass bowl on top of another glass bowl that contains hot water. Melts in a minute.

POTS does change you. I am a parent of a 12 year old boy that has POTS. Our lives have been turned upside down. Before this last school year started, his symptoms got worse and he was not able to attended public school. I quit my full time teaching job so I could stay home and care for him. I started a blog called survivingpots.com. It is our story about how it all started in a boy so young. Our goal is to get through one day at a time. Through research I have learned that my son will possibly outgrow this strange syndrome. I keep this positive thought with me all the time. It has been a while since my son has had any good days. Since he has had the flu in January, he has not been able to stand up and walk. He has also had a sleep study and we just got those results back. So I have a few things to blog about. I like reading new blogs. I look forward to reading some others. Thanks for posting this.