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Jangle: I'm so glad you are seeing improvement! My daughter just started an exercise program last week. I hope it works for her as well. May I ask how long you have had POTS?

Jangle: I'm so happy for you that you are seeing improvement in your symptoms. My daughter just started an exercise program last week. I hope it works as well for her. May I ask how long you have had POTS?

Kayjay: My daughter has taken B12 shots once a month for the last 3 months. Her blood tests confirm that her B12 levels are within normal now. She has not noticed any improvement but they haven't caused her any adverse side effects either (except for the day after the shots she notices that her tummy is a little upset). She is going to continue them. Good luck!!!

Petunia's Mom: My daughter also was on Florinef (.1 mg) and didn't notice any difference in symptoms. The doctor increased the doseage to .1 mg twice a day and she felt better for approximately 2 weeks and then started to have MAJOR depression. She had to wean off Florinef and, thankfully with some time, the depression went away. Too bad, because it did seem to help the POTS symptoms but the depression symptoms were just too scary to have her stay on the med.

Chaos: My daughter's are in her upper abdomen and chest. What did you do to help with your spasms?

Ok, I know this is a strange question, but does anyone else get severe stomach/chest pain after eating when they are on their period? My daughter is literally doubled up, in tears, once a month for a few days (different than just regular cramps). It seems to go in waves and be worse after eating. Any ideas what could be causing this?

My 23 year old daughter feels the same way you do. Her friends have stopped asking her to go out with them because she has had to cancel plans so many times because she is not feeling well because of POTS. It is not fair that you should have to be going through this at such a prime part of your life but hopefully, with time, you will start to feel better. Hang in there!!!!

I wish I knew what to do if it is a blood flow issue. We are still trying to figure out the same thing. Right now my daughter is trying to drink 3 liters of liquid a day and increase her salt intake as much as possible (since she has been unable to tolerate meds). Hopefully the doctor will be able to give you some advice.

My 23 year old daughter has POTS (diagnosed in November 2011). The doctor is sending her to a cardiac rehab program (she is starting next week). The physical therapist said that she has never dealt with a POTS patient but she felt she would be able to help. Does anyone have any suggestions on exercise programs that they have done and how slowly they started so that it didn't make their symptoms worse.

My daughter also experiences abdominal pain and has had every gi test imaginable, all results coming back normal. We just have come to the conclusion that it is part of her POTS symptoms. You might want to ask the doctor is the pain is caused by a blood flow issue (either pooling in the abdomen or not enough blood in the abdomen).

Kisha: Welcome! I am relatively new to the forum also. My daughter is 23 and was just diagnosed with POTS in November of 2011 (after a viral illness). Have you tried checking your heart rate while laying down and then when standing up? You might want to try this (or have the doctor try this). This might give you a clue as to whether or not it is POTS. Also, as other members have told you, a lot of potsies are vitamin D deficient (I know my daughter is) so if the doctor says that you are deficient, taking vitamin D supplements is always worth a try to see if it helps you. I hope you get some answers soon. I know that this journey can be very frustrating.

Debbie: My daughter does get "shaky" with POTS. The only time she got full body spasms was when she tried taking Lexapro (we had to take her to ER because she was vomiting and body spasms/tremors for 10 hours straight that just would not stop). Is she on any meds? Pam

Mandy: I'm so happy you are feeling better since going off the meds. My daughter also had to go off beta blockers and fludrocortisone because of severe depression that they caused. I certainly understand the confusion that this horrible illness causes. Everyone is different and what works for one person will not necessarily work for another. The important thing is to find out what works for you. We also are trying the more natural way instead of meds since my daughter has been unable to tolerate the meds and they make her feel worse. She is trying to get as much salt as she can, drinking as much liquid as she can, getting monthly B12 shots, and starting a very slow cardiac exercise program. She went to a doctor that specializes in acupuncture and chinese medicine. He didn't think that acupuncture would help her but he started her on magnesium. I can't say that we have noticed a difference but at least no negative side effects! The neurologist that she saw also wants her to start taking iron tablets so I guess that will be the next step. Good luck at the autoimmune center in Alabama!!! Pam

Has anyone tried eucommia? I read that this is a "natural" beta blocker. Since my daughter has been able to tolerate regular beta blockers I was wondering if anyone has had any success with this?

I'm so sorry that your daughter has to go through this. I also have a daughter (23 years old) that was diagnosed with POTS (she had a virus in June of 2011 and in July 2011 the POTS symptoms started - took us until November 2011 to get her diagnosed). She also complains of stomach pain but the doctors have run all the GI tests and everything comes back normal. I am assuming it is a blood flow issue to her organs in her stomach that cause the pain. As far as school is concerned, my daughter had to withdraw from college classes last quarter but is hoping to return next quarter. We have been to the Mayo Clinic in Arizona and to a specialist at Stanford.. It seems that every POTS patient is different and you have to find out through trial and error of what works best for your daughter. The doctors have tried several different meds for my daughter but she is unable to tolerate any of them. So we are now just on a regimine of 3 liters of liquid per day, as much salt as she can get in her diet, and next week she is going to start a cardiac rehab program (that should be interesting since she can barely walk around the house without getting out of breath!) The good news is that I have heard that the younger a person is when they have POTS the better chance for recovery. Hopefully the medications that the doctors give her will help. I have found that this is a great website with lots of helpful information. Good luck to your daughter and your family through this difficult time.

My daughter also had an adverse reaction to Lexapro (vomiting and tremors). She also had to discontinue use of Lexapro (after only one dose).

Jon: Sorry to hear what you are going through. My 23 year old daughter came down with POTS after a viral illness also approximately 8 months ago. Have you tried using a blood pressure monitor to see what your heart rate is while sitting and then standing? That is how my daughter figured out she had POTS and then she had it confirmed by a tilt table test. The best thing you can do is find a doctor that is an expert in the field. There are not many but I know there are some listed on this website. Hopefully you can find a doctor close to where you live.

What is "mast cell"? Is that part of POTS or a different condition? How is it treated? I

Well I started the Verapamil yesterday and by last night I was feeling awful (skin felt like it was burning and I just felt generally worse). I woke up this morning still feeling awful and really dizzy. I have a call into the doctor's office to see if these are normal side effects that will go away. I am soooo tired of trying new meds and having reactions to everyone of them!!! Anyone else have symptoms like these on a calcium channel blocker??

My daughter has POTS and her B12 levels were tested when she went to the Mayo Clinic. Her results were also in the low normal range (low 300s). They suggested that she take B12 supplements. She tried oral B12 supplements but they made her stomach upset. She then asked her cardiologist for B12 injections and the cardiologist had no problem agreeing to try it. She has the injections once a month (she has been doing this for the last two months) and so far she really doesn't see any difference in how she feels.

I am new to this site (diagnosed with POTS in November 2011). I just saw a specialist today who wants me to start taking Verapamil (a calcium channel blocker). (I have previously had adverse reactions to beta blockers and fludrocortisone). Has anyone tried this drug and, if so, have you had good or bad reactions to it? Thanks!!

My daughter has POTS (she was diagnosed in November 2011). She is unable to take Fludrocortisone because it caused her to go in to a severe depression. Has anyone tried licorice root instead of fludrocortisone?