looneymom

All I know to tell you is to make sure you are getting enough salt and water. Might try sipping on gatoraide to see if that would help.

Hey thanks Arizona Girl. I am getting very suspious that my son needs more testing done. I am beginning to understand that this can be mixed in with POTS. I hope there is a doctor near us. Thanks for the information.

What type of supplements are you taking that might have helped you? I have been looking at some studies on fish oil.

Thank you for posting the article Naomi. This is excatly the type of things my son has been describing to me. MAYO did not do a QSART. So now I am wondering why. Is this a test just for adult patients?

Illness is your worst enemy with POTS. Hope you get over it quickly. Glad your MRI went well. Have you had any other test to check for MS? My son has had a MRI as well but nothing showed either. MS does not run in our family. Just wondering if there are other test that are run to check for MS.

I've heard that florinef can cause issues with potassium. My son has been on this meds. for over a year. He also takes 8 to 10 grams of salt a day. Maybe its time to request a blood test to check out his potassium levels. This last summer he had test that showed low renal and adlerstrome levels. My son is still not able to stand up since he's had the flu. Just wondering if electrolites are still out of balance. Sorry about spelling. Just frustrated because my son is still having a rough time of getting back up and being able to walk again.

You are not crazy. I am going through the same thing with my son and its very frustrating. He has many symptoms and most of the doctors we have seen so far just say its in your head or he is too young to be having all those symptoms. So when you are not satisfied with a doctor, you go to someone else hoping they will take an interest in your case. If you live in a state that has POTS doctors you are fortunate. Take advantage of it. Keep your chin up and make the best of it.

Good for you. Play it safe. I use a Walgreens Pharmacy. If you use the same pharmacy everytime, they usually keep track of your meds. and tell you if there might be a problem. Hope you feel better soon. Sometimes hot tea with honey will also help a cough.

I've read several articles on potassium. I understand that this can be a big issue with POTS. What test are accurate? Does your body give you any tale tale signs? My son has a hoarse voice 50% of the time. His voice might be fine in the morning but hoarse in the afternoon. It comes and goes. Some days he is fine. This happens anytime of the year. Just wonder if this is a symptom of low potassium.

Very interesting article. Keep them coming.

If you want it want a care givers point of view. I have told our story on survivingpots.com.

Took my son there and he was diagnoised with POTS. However, we don't live in that state and didn't get much help afterwards. They did not look for any underlying causes either. Our cardiologist even sent a letter with his concerns to the doctor. Hope it works out better for you.

My son has POTS and a vocal tic. The doctor told as to get Delsym it's over the counter. He took this when he had the nasty flu with the cough

I agree with all of you. My son wants off this rollar coaster too. As a parent, its really hard to see your child go through this. We saw his cardioloist back in November and all he could say was that between the ages of 16 and 21 he should outgrow it and then we'll see what symptoms he left with. But he also believes there is underlying condition causing the problem, so I research and he continues to talk to doctors at Vanderbelt after new test results come in. Feeling bad all the time is awful and wears you down. And missing sleep dosn't help. Try to keep your mind off your symptoms. If you feel like getting out, maybe just a 15 minute break in the sunshine or sitting by a window. Sunshine can help with depression and raise vitamin D levels too.

Before my son had the flu, his headache had finally gone away. But now its back. His iron and D levels are going to be rechecked again. If they have taken a nose dive again, this may give us the answer to why his hadache came back.

Don't be scared. POTS is very unpredictable. Since you don't know exactly how POTS is going to affect you body, symptoms can be scary. It's very helpful to have a doctor and nurse line handy and you have found us online. My son was diagnoised with POTS over a year ago and has been through many test. He has tremors and twitching from waist down. This symptom started 3 months after his diagnosis. POTS has many strange symptoms. Don't be afraid to ask questions and search for answers. Welcome aboard.

My son has the same problems. However what I have noticed this year so far is that sometimes his symptoms do not flare as bad with the weather changes. Just wondering if this has anything to do with how his body is adjsting to the POTS.

He has low dopamine and seratoin levels. I was hoping it would raise something up.

If you are on any blood pressure meds. be sure to talk to pharmist or doctor. My son has to stay away from decongestants because he takes midodrine.

Since my son has had the flu, his headache has come back and nerve pain levels are worse. He has not been able to sleep through the night and wakes up 3 or 4 times through the night. Our neurologist started him on 25mg the first week and raised it up to 50mg last week. He is still not sleeping through the night on this last dose. Just wondering what experiences you have had with this meds. So far his blood pressure is staying where it needs to be at but he woke up this morning with legs twitching.

My son has taken both of these meds. Cymbalta made his heart race and Lyrica did nothing for nerve pain or headache. Hope they work better for you if you decide to try one.

Yes Kris, my son is going through this. He is 70 pounds over weight. His doctor said to do an 1800 calories diet plan with him. He only wanted him to lose a pound a week. The doctor was concerned how this would effect the POTS. However, when he got the flu it took 10 pounds off him. So far he has lost 24 pounds. He is on a protein shake 3 times a day. This shake does replace one meal only--breakfast. He gained his weight from meds also. Before he had POTS, he was a healthy active boy. Something else we are doing, is using a nutrabullet. Green drinks are wonderful and full of nutrients. He drinks one after lunch. My son's appetite has not been that great since the flu, which can be a plus, but I worry about getting the nutrients that his body needs. Right now he is able to ride a stationary bike and doing core strenghting exercise. Counting calories can be a pain, but it does allow for a variety of different meal plans.

MAYO says my son's started because of a virus during a growth spurt. My son is tall for his age. I started a blog a year ago to tell our story on survivingpots.com. Might be some useful information to ask your doctor about. Glad you are getting to see a pots doctor. Hopefully you will have some answers soon.

My son took this medication and had major problems such as twiching, leg tremors, shaking ,worse headache. He was put on this medication due to nerve pain. His dopamine and seratoin levels drop way below range. If you want to know more of our story its in a blog called survivingpots.com.

It will be ok. I'm sorry you feel so bad. It seems worse probably because your hubby is gone. Try and rest. When my son is having a bad day, I try to get his mind on other things. POTS is a rollar coaster. Eventally you will start having more good days than bad. Yesterday could have tired your body out more than you thought. When my son is more tired, he has trouble with tremors and vocal tics. I've learned that when my son gets more active than normal, the next day could be bad. It's like a balancing act. If you can learn what your body can tolerate, you do that for awhile until you bump the activity level up 1/4 to 1/2 notch not double time. Hang in there, it will get better.