Wow! This page has been tremendous help. I am the mother of a 17yr old that has been recently diagnosed with POTS. We go to Mayo Clinic on Sept. 13th to see what they plan to do. Currently, I must say I am glad I am a nurse because I understand the entire receptor~transmitter terminology etc. However, no matter how much education I have it seems when my child becomes ill I then become panicked and lose all ability to help. Except research! I am good at researching things. Ok so here I go:
Daughter was diagnosed with IBS 5yrs ago at age 12. She has been on Elavil and Align consecutively with good and bad days. We had our fair share of tests and everything coming back normal and then given the IBS diagnosis as a way to just have a name I guess. It was a long year of tests and I just want her better now that we have been given a new diagnosis of POTS, I am worried the same thing will occur again with numerous tests with normal findings. She has already had numerous Normal EKG’s. Normal bloodwork, but I am not 100% certain all they checked for with the bloodwork.
Now here’s the interesting part that I connect with 100% after watching the POTS video’s Part 1,2 & 3. My daughter has had soo many different symptoms at different times and gets the same answer that all is normal and will subside with age, but it seems the issues come and go with no cause. The following are symptoms she has had: All IBS symptoms, Chest pain that takes her breath away and she has to literally take small breaths up to 5 minutes (all tests were normal and we were told she could be having panic attacks), Chronic major stomach pains (all tests normal), pains near the gallbladder (ultrasound normal), Continued on and off symptoms of food poisoning with severe diarrhea and lots of bile (IBS related we are told), Restless leg syndrome (told it is her growing), Insomnia on and off (Told she is just anxious) , Flushed red face and feeling warm (told it’s normal), On and off TMJ pain (told it’s because she clenches her teeth, they wanted to have her wear a $2,000 mouth guard, but she has a severe gag reflex), Gag reflex very bad (told it’s normal because her mouth is small).She has also had to go to Behavioral counseling because we are told her anxiety could be from holding in feelings (I really believe now that my daughter was being honest that emotionally she is fine, but can’t stand her stomach). hand tremors off and on (told they aren’t sure).
Recent new symptoms that ended us at the ER 2x and now given the POTS diagnosis:
standing, sitting, lying down out of nowhere she gets dizzy, head has pressure, nauseated and everything doesn’t spin, but it get’s blurred, heart races, she then goes into fight or flight mode and this all takes place and lasts about 5-10 minutes and then she is extremely tired and fatigued for the entire next day.She says her head feels weird after it happens. She gets sharp shooting pains in h er head out of nowhere. Seems to happen more in the morning time. They did the Poor man’s tilt test with Orthostatic blood pressure and HR. Her BP remained fine, but her HR skyrocketed.
She runs out of breath and can’t seem to catch her breath after just walking stairs. She isn’t overweight yet, but is 5’8 and 145lbs.
She seems to be hungry alot more now and has shot up in weight and height in the last year causing stretchmarks when before she could barely keep weight on at age 12 when IBS symptoms put her in the hospital at a mere 70lbs.
Everyday it is something more and I am feeling hopeless. She’s a great young lady and is going to graduate with Honors and I just want her to enjoy her senior year. I can see that this newest POTS stuff is really taking its toll and she feels like she is a walking problem or is just going crazy, but I reassure her I believe her, but the sad part is that I haven’t been able to find her relief.
How do I approach the doctor with the new Parasym Plus? I am a nurse and I know the medical field and I am not sure how responsive they are going to be. What specific tests should I have them do? And should I go ahead and start her on Zantac/Zyrtec? She has taken Zantac before because of IBS and heartburn. I just want her to feel better.
Thank you for any advice you may be able to give. I have watched all videos of POTS and Driscoll’s Theory in the last 24 hours and I have read many of the posts on here. I know we are all different, but I need to get my daughter some relief.