Aortic Migraines

I am so sorry to hear about all the the symptoms that you are experiencing. I know how hard it is when no one can explain it, or, feel it is very strange. I have not heard of aortic migraine. I have heard of abdominal migraine. That can cause symptoms such as diarrhea, nausea, vomiting, etc. I wanted to share this, just in case it may be beneficial: https://migraine.com/migraine-types/abdominal-migraine. I do not have CVS, but do have Gastroparesis. There are many with that who were at first told they had Cyclic Vomiting. I do know some who have both, Gastroparesis and CVS. Have you consulted vascular, GI, cardiology, and neurology? Wishing you the best in this medical journey. (Tonya, team member).

Tonya, Thank you so much for both your encouragement & sharing. Yes, the aortic migraine & abdominal migraine are one & the same. Perhaps, I should have used the latter term. And ,yes, I have chased this episodic nightmare since age 13. Last year was one of the worst episodes where I was a little too close to permanently checking out for comfort. I will add pulmonology, rheumatology, immunology, oncology, urology, hematology , & hepatology to your list. I do not know if you are familiar with porphyria, but the episodes present like Variegate Porphyria (VP) or Hereditary Coprophyria (HCP). When I was rushed to the ER last year, the ER doctor met us (the EMTgroup that delivered me) at the door & I became Triage #1 which is not a position anyone wants to be in. The doctor had no idea what he was looking at: blood tests were rushed & he came first to tell me that I had damaged my heart; then, he came back to tell me that I had had a heart attack; then, he came back to say that ,no, it was anaphylaxis with the heart attack. Then, I spent a week in the Critical Care Unit where I was tested for everything that the doctors could think of. After most of my blood work came back abnormal, it eventually went back to normal over the next few weeks. My heart & arteries were just fine; I had not suffered any heart crisis & my arteries were clear.

I have spent a year dedicating my time to find a diagnosis because I suspect the cause of these episodes to be genetic. After exhausting the experts in given fields & medical studies in Florida, my team of doctors reached out to the Mayo Clinic in Minnesota. The Center for Genomic Studies, Mayo, Rochester saw me on May 7, 2024. They drew blood, & I am having my complete genome run. Just running the genome & determining & analyzing takes three months. Then I'll be working with my Mayo geneticist & genetic counselor to ,hopefully, diagnose the episodes & to see what else my genes can tell us. The geneticists confirmed something that I had speculated about: a person who has one rare disease or is immunocompromised as I am will likely have other genetic irregularities. I have psoriatic arthritis (PsA), Spondyloarthropathy (SPa), Common Variable Immune Deficiency (CVID), &,probably, CVS, & who knows what else. Being a poster child for NORD is not a place where anyone wants to be. I will turn 73 this year; I have been chasing this episodic nightmare for 60 years. I just mistakenly believed that ,surely to goodness, whatever I had was not rare that I just needed to find the right doctor to diagnose the problem. Now, all I can say is stay tuned. So far, no doctor has ever seen anything like these symptoms that hit multiple systems in the body: the gastric system, the nerve system, the cardio/pulmonary systems, etc. Now, I have faith that Mayo ,if any place can, will be able to unlock some of my body's secrets.

Again, Tonya, thank you so much. Your compassion has really touched me because sometimes it is a bit lonely as a patient.

Rebecca, Thank you so much. I really appreciate the support. I will update as I hear from Mayo. It’s important because in sharing the process, hopefully, others might be able to use similar resources. It will be wonderful to receive anything that can be discerned from my genome, but my commitment is to leave that genome for my daughters, so they will have a record of their genetic maternal history. The other driver for me is to leave my genome on deposit at Mayo so that any valid research group or educator has access to my genome for what it can help further medical research. As a former educator, I am all about the legacy of education & what I can leave behind to make the world a better place & ,hopefully, make someone else’s diagnostic journey a bit easier.
Thanks, again.

Tonya & Rebecca, Thank you both. Tonya, I can add another comment to the list of 'Words You Never Want To Hear A Doctor Say' : 'Hmmm, well it (referring to a medication or a specific course of medical action) shouldn't do that.' I have bitten my tongue so many times to prohibit me from answering with a bit of sarcasm that it is a wonder that I still have a tip to my tongue. I always want to say, 'You think!' but I say in a milder tone, 'Well, I presume it shouldn't, but it did.' I have also had doctors ask if I have seen a therapist when looking at bizarre tests & not being able to interpret them or 'As far as I am concerned, there is nothing wrong or there is nothing I can do.' When Imitrex first came out, a neurologist recommended that I take it. I asked what the ingredients were, so he took out the sheet enclosed in the box, started to read the contents, looked at me & said, 'Oh my goodness, I would never take this.' The two characteristics that I possess are being able to see the absurdity in life & laughing (sometimes after a good cry) & my stubbornness. I will not give up if the matter is something I believe in. Thus, we dust ourselves off & keep at the medical mysteries until there is enlightenment.

It was almost thirty-five years ago when my CVID was diagnosed. Weekly gammaglobulin infusions have come a long way, but the wonderful infusions have given us a new level of health and life. However, I really hope someone knows somebody who has had abdominal migraines & can share some observations because I do get a bit tired of being the lone, little voice in the wilderness asking if anyone knows about _________. judy