looneymom

For constipation, have you tried using magnesium citrate. The citrate is what helps the magnesium asorb into the body. A naturalpath doctor started our son on this and it really helps. Start with a low dose and add more each day until it works for you. When you are regular, you can back off the dose. My son's magnesium levels were in range when he started this but I learned from this doctor, just because my son was at the starting range, this was not the range that was helping his body function. The more literature I read on POTS, I am learning that the middle or 75% of the range for certain vitamins and supplements is the better range for POTS patients.

Great news. You have eliminated some other diseases, that you don't want.

I have a 12 year old son that is the same way. He was never like this before POTS. If I keep the temperature in the house at 70, this seems to help some. But its a different story when he goes outside or travels anywhere. I have him dress in layers so he can shed the clothing if he needs to. He also takes zoloft but it does not seem to help with the temperature issue either.

Thank you for sharing your story. I am a parent of a 12 year old boy that was diagnoised with POTS in December of 2011. Being the care giver of someone that has POTS is not an easy job. So glad to hear that your wife is doing better and would love to hear about things that helped her get back to a more normal life.

Are your symptoms worse after you eat? If so, you might want to be checked for MCAS. My son has POTS and will be seeing a hemotologist to investigate the MCAS.

So sorry about your visit Kris. I have a son that has POTS and the Endo would not give us the time of the day either. Its very frustrating trying to find doctors that will at least be understanding and try to help you with your medical condition. My son has many symptoms of MCAS and our GP is trying to get him into see a hemotologist. Hang in there.

Hi karen. I have a son that has POTS but he has symptoms of mcas also. He is going to see a hemotologist for MCAS. My son does try to exercise 3 to 4 times a week. Exercise does help with the POTS but you have to be careful about the type you do. He rides a stationary bike for 10-15 minutes and then does strength exercises for legs and core muscles. He works with an Physical and Occupational therpist twice a week. Welcome aboard and hope you find the answers you need.

Salt has helped my son but he is also on midodrine and fludrocortisone. He drinkes 2-3 liters of water plus gatoraide. His blood pressure will not stay up unless he does this everyday. He takes 8 grams of salt tablets per day.

Try this web site http://forums.phoenixrising.me. I was able to look at Dr. Afrins MCAS Primer for Physicians 2012. It gives the test that he acutally runs. Hope this helps. My son is going to see a hemotologist to be checked for MCAS.

This last summer was horrible for my son. As a mom, I didn't really understand what heat intolerance was for a POTS patient. He would shake and have termors from his waist down. He would flush easily and his blood pressure would fall down to 60 over 42. The air conditioner was set at 70 and he just stayed in the house. Usually in the winter time, our house is heated by wood stove. However, because we are having a mild winter in Oklahoma, I have just used central heat set at 70 and he has done much better with temperature regulation. Hope this summer is better and milder than last.

Exercise is good for you. My son sees a physical therapist twice a week. When he first started out, he did 30 minute sessions and he was wore out. Our physical therpist knew nothing about POTS but was willing to learn. I brought her articles from Dinet. My son was bedridden for several months but learn to sit up and walk again. Because he was so severe, he did pt every other day Monday, Wednesday, and Friday. He does rest on the weekends. Our PT also will take his blood pressure and monitor his pulse during during the sessions. As you become stronger and your body adjust to POTS, you may be able to exercise more days. My son has had the flu, so he has had to back off when he was so sick. Sickness does take a toll on your body. On days he does not see the pt, he uses a stationary bike and does exercises for core muscles and exercises on posture ball. Hang in there, exercise has its benefits. Just go slow and be patient with your body.

Sounds like you may have added a little more stress to your system, with the move and all. Might need to slow down to get your body to adjust. POTS is unpredictable. You can always plan your day but may need to plan for some breaks along the way.

Thanks for sharing. About 2 weeks ago I started increasing my son's vitamin C. I am seeing some positive changes in his health condition. He is up to 10,000 mg a day.

peanuts and beef jerky

Have your iron and vitamin D levels been checked? My son has POTS and was living with a nonstop headache. His headache finally went away after these levels came up. He was deficient in both and it took about 10 months to get the levels up. Also make sure you are staying well hydrated. My son always wanted an ice pack at night. This seemed to help him more than anything. POTS is a strange syndrome and effects everyone differently. Sorry you are in so much pain. Have you seen a headache specialist? Sometimes they can help if they understand POTS. Last but not least, Never give up! This fourm has lots of good information that you can take to your doctor.

Welcome to the forum. My son suffers from pain in the joints and muscles. He never had this before he was diagnoised with POTS. He drinks 2-3 liters of water a day plus gatoraide. So as far as I know its not from dehydaration. Our doctors do not know where his pain is coming from but my son is being referred to a hemotologist to be checked for MCAS. Another underlying cause could be EDS, I understand that this can cause joint pain. Lots of information on the form to look at and take to your doctor. Keep looking for other causes, this could be what's causing your POTS.

Could it be a high level of histimines in your body? MCAS

When my son was first diagnosed, I thought no big deal. But playing with medication changes the whole big picture. If you have an underlying condition thats unknown and mixed up with POTS this could be one reason why your symptoms have changed.

Hang in there Sheila. Your faith will get you through because HE has promised us the he will never leave us. I am a parent of a 12 year old son with POTS and had to quit my full time teaching job to stay home with him. Being sick and having a child that is ill is not an easy burden to bear. Try to get some rest and do the best you can. Do you have family, church member, or close friend nearby that can help out so you can get some rest? Hugs and prayers coming your way.

When are you taking your Zoloft? My son's doctor told us not to give it to him until about 30 minutes before he goes to bed so the side effects won't bother him. He takes 50mg at night. Zoloft makes him too tired if he takes it during the day.

Puppylove have you tried ginger tea made from real ginger root, Ginger is really good for nausa. It got so bad during my second pregnancy, that I had to drink this before I ate anything and sometimes I drank it with my meal.

So sorry. All I can say is hang in there. Everyone has up and down days. I learned a long time ago with my son that going to the er just is not very helpful. Doctors that don't know anything abot POTS, just usually send you on home without much helpful advice. Drink your fluids, take your salt and try to change body positions if your body can tolerate it. Hopefully tomorrow will be better.

Thanks for posting this. I have been trying to research mast cells and histamine receptors.

Welcome to the forum and so glad you have a doctor that recognizes POTS. That's a blessing! Lots of information to view and lots of people that care. It also helps to have a spouse that's understanding. If you can't find an answer to a question, be sure to post.

Just wants some advice. My son has had the flu and the day it started, he was not able to stand up and walk around as he normally would. He is able to sit up in the wheel chair and to stand long enough to make a transfer. His fever is gone but he has a terrible cough. When is it safe to try to start doing some basic sitting exercises, like leg raises or arm curls. I know if you stress the body too much it can cause more problems. He still has one more day of tamiflu. Having flu on top of POTS is the pits! I am anxious to see him start walking again. Is it unsual for someone not to be able to walk for awhile after they have had such an illness? I assume this is an symptom of POTS . For those of you that have been dealing with POTS for a while and have be able to stay on an exercise, Do you have less trouble with POTS symptoms when you body does become ill?