Runnersmom

My son has hyper pots and is starting to see improvement since being prescribed Carbidopa. It took seven months to notice a difference, but it has finally kicked in. His recovery time has been shortened and he is actually been able to leave our house for a short period of time. He is still unable to read or concentrate for more than 15 minutes, and unfortunately that did not improve.

Yes, my son started SubQ a year ago. The immunologist felt that SubQ was better for POTS patients and it has been easy to administer from home. He is better able to exercise and has less dizziness. Also, he has never had a headache from it.  However, his fatigue has not improved.

We had a very good appointment with Dr. Grubb back in April 2016. I was frustrated with his office for not giving us a follow-up appointment with him, but we are now scheduled with Beverly. Based on Sarah's information, we are going to drive eight hours for a follow-up with Beverly. My son has high BP as well and found Dr. Grubb very knowledgeable how to treat him. 

We have our first session Monday. The therapist said she will try it for four to six weeks to see if there is any improvement. She also wants him to try physical therapy.

Thank you for your response. The Brain Fog and fatigue are his two worst symptoms. I was hoping this would help him to concentrate on being able to read again and go to school.

Has anybody with POTS had experience with Cognitive Therapy? The neurologist has referred us to a therapist, but they don't offer Biofeedback. I have not seen this mentioned any where when referring to helping BrainFog.

We went to a dietician, who diagnosed my son with adrenal fatigue based on the results from a salvia test. We spent a fortune on supplements and he was unable to consume the 15 pills per meal. He ended up at an endocrinologist's office and the doctor found his cortisol levels to be normal. The doctor said she only believed in scientific results and he didn't need to continue with the supplements.

Mike,

Thanks so much for your reply.

Interesting enough, my son has not responded to any of the normal POTS medications. His POTS was brought on by a parasite. He was running at a cross country race and drank water that they filled up from a hose in the weight room. He used to run six miles a day and now can't run without becoming lightheaded.

Could CFS explain why he doesn't see improvement even with a mild POTS diagnosis?

Thank you for your reply.

One of the things that bother me, is that he is unable to visit with friends more than an hour. When he took a class at the community college, he would be white as a sheet when I picked him up. If he drives, he is down and out the next day. If he reads too much, he can't function the next day.

Does this sound more like CFS than POTS?

My son has had POTS for four years. His worst symptoms have been fatigue and the inability to read or concentrate for more than ten minutes. His setbacks have been from trying to take college classes. We were told by a cardiologist that he does not have CFS because he doesn't have joint pain. We have tried increasing fluids and salt, but it did not help. Does this severe brain fog sound normal for a POTS patient?

Have you tried Salt Stick? They are coated tablets and my son has had good luck taking these.

Have you tried Salt Stick? My son has had much better results with these salt pills.

You are such a good inspiration with all your research and support for your son. It is tough watching our family members go through this ordeal. It sounds like your cardiologist is very good and is figuring things out. Hang in there! You are a good Mom!

Yes, my son had that done this past year. They used a local anesthetic. His lip was swollen for about a week, but was not bad at all. There was very little pain. You will get stitches and so you have to be careful not to bite your lip while you are eating. Good luck!

No, I filled out the form online for an appointment for a POTS patient. I was wondering how I got an appointment so soon.

My son, who has POTS with terrible fatigue tried it, but saw no improvement with energy. He has had much better luck with Cerefolin . His neurologist wrote a prescription for 15 mg , which is a higher dose than what you can get with the over the counter dose.

Does anybody know why a POTS patient would be scheduled through the Fibromyalgia Clinic at Mayo? Is there no longer a dysautonomia clinic there?

Hah, my son has the same symptoms you do DeGenesis and no meds have really helped him. He felt terrible on the Mestinon and Midodrine. He is currently taking Losarton and it does seem to have a better standing BP and HR, but he still suffers from severe fatigue. He has small fiber neuropathy, also. We have been through three POTS neurologists and a POTS cardiologist and none were able to help him. Should I try Dr. Suleman or who would you recommend ?

My son gets two IV s a week. He used to receive two liters at each appt., but the latest neurologist wants him to stop completely. He is now weaning himself off by getting 1 1/2 liters twice a week. His doctor does not require blood work for each visit. The neurologist said that this was a short term solution. I will say it does make a difference in energy level, though.

Yes. I took my son there last Spring and was very disappointed.

My son has tried Mestinon twice with no success. The first time he tried it for five weeks and suffered from severe fatigue. The second time he tried it , the same thing happened. He also had difficulty with several of the beta-blockers.