NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › POTS, PCOS, Intracranial Hypertension, Suspected ED and mast cell issues. Can someone help me where to begin? › Reply To: POTS, PCOS, Intracranial Hypertension, Suspected ED and mast cell issues. Can someone help me where to begin?
Sorry for not responding sooner, it’s been a long ride. I got my official DX of MCAS on Friday. DR also said he thinks I have EDS, I also got my offcial DX of POTS. I noticed that my intercranial pressure only goes up when I eat high histamine foods. I am at a point now though that I do basically have an ANA reaction to almost everything. My Dr started me on double doses of zantac and zyrtec like your protocol and it’s been such a huge help. I didn’t start it before because my allergist wanted me to get my tests without the meds but I could not take everything I was going through anymore. I have to tell you that I was having back to back ana reactions and then the first night i took it I slept for 12 hours!!!! The biggest impact is that it opened up my airway so I could breathe. My nails were purplish and now they are pink! With that said I still have pulstile tinusitis (which i have had for six years) and some pain in my head (not nearly like it was) I also have pain along my ear and the back of my neck. One side of my face is a little more swollen then the other. Wondering if it is bells palsy or if I had a stroke :/. I see my nuero this week and I have all this new information to give him. At this point he doesn’t think I have intercranial hypertension anymore because my last LP opening was a 17, however…I feel the only real accurate way to measure pressure would be ICP bolt monitoring. I am unable to take any diuretic, I have reactions to them and if you have MCAS they are on the do not take list. I am located in the Tampa Bay area of FL and have been seen at Bayfront however, I am thinking about being seen at Tampa General as they are a bigger hospital and rank higher with their nueroscience department. Do you have a suggestion to a nuero or a nuerosurgeon I could contact that has seen patients with our exact issues? Even if it’s only for them to converse with my doctor’s to better get an understanding about what I am going through or how to help me. I am also willing to travel to another state as well. I would like to not have a shunt but I would like to try to figure out if it is necessary or not at this point. I have lost 62lbs this year, just by eating low histamine, no gluten or dairy. I have spent most of the year in bed, so its amazing I lost so much. Also shows how much my body was inflamed. I have also brought my sed rate from 49 to mid teens, just with diet. I have also incorporated epsom salt baths in because I found out my MTHFR mutation that my body does not detox properly. Last year when I got an ultrasound, they mentioned that it looked like my jugular was almost totally closed. Then I see the pictures in your book and how they look and it makes me wonder. I am trying to get a dr to revisit that, but no one will because my MRV looked fine. Do you think that is something of possible concern. I just don’t know where to go at this point because dr’s seem to be so lax about everything or uneducated. I “look fine” to them but inside i am haywire.