Hi Dr.Diana:
My daughter takes a mess of drugs. She takes (are you ready???)
Florineff
Midodrine
Pindolol
Zrytec
Necon
Metformin
Prilosec
Klor-Con
Flexeril
Tramadol
Wellbrutrin
Alprazalam
Viatamin D OTC
B-12 OTC
Mylanta
She was diagnosed with POTS in 2007 and EDS in 2011. She also has Acanthosis nigricans that’s why she takes the Metformin. For about a year now she’s been having swallowing issues and it may have even been longer than this but we were always blaming her chest pains on the EDS when now we see they are really from her swallowing issues.Last year she was tested for mast cell but it was at the high end of normal the doctor said. We had her on large doses of benedryl and zrytec but she had strange reactions to the drugs. She was having reactions like “wanting to run scissors across her hand” or go run in front of a car”. She said Mom I am a rational person and I know this is wrong as soon as we stopped this medicine within a day it subsided. I think she just had too much in her system but he cut it out completely. I did see changes in her symptoms though. These eating issues have been subtle. One day they seemed to have just been there and she couldn’t eat. We weren’t really paying much attention to them. Now she can’t eat at all and everything is getting stuck in her throat. She can’t drink anything cold,eat solids,spicy or she WILL go into a severe chest spasm. I will get that clear benedryl tomorrow and try it for her. I am willing to try anything that will bring her comfort. I am not complaining about her losing weight cause she did need to lose weight but she’s losing important nutrients,vitamins and she’s lost so much hair that it isn’t even funny. She’s not the same teenager she was 6 months ago. Today I had to take her for IV infusion because she was so weak she couldn’t even stand up.
She’s went to the ENT on Tuesday and they thought she had superior canal dehisence but that was ruled out but the pain is still there. The doctor sent her for an MRI yesterday but I won’t have the results yet for a few more days at least. I will definitely ask about the sella. My daughter is NOT on Diamox and I will try asking about it but her doctor isn’t one that likes to put what I ask for so I think the chances are going to be slim,but I’m sure going to try. I appreciate your assistance. I have to tell you that I had words about you with our doctor. He informed me that you were “just an opthamologist” and I said “Yes but she is an opthamologist who has POTS and EDS and a family who also has it so she has a vested interests in this disease!” Sorry,Dr.Diana but sometimes these doctors think they are too big for there britches with their diplomas and think they are above everyone else…and I am finding they are far from it! Thanks for breaking that barrier and being human.