First Name

Last Name

Albert Lea


Country of Residence

Posts (435)

Dec 16, 2019 · POTS - postural orthostatic tachycardia syndrome in Heart Rhythm Conditions

@flick027 I recommend cardiac rehab also. One website that has been very helpful for me is: http://www.dysautonomiainternational.org Hope this helps!

Sep 11, 2019 · Heart rate increases after eating in Digestive Health

@mom123mcq am I understanding correctly that he has been diagnosed with dysautonomia? POTS? Has anyone mentioned Median Arcuate Ligament Syndrome?? Seems like we are seeing more of the two diagnosis lately.

Sep 11, 2019 · Fibromuscular dysplasia (FMD) in Heart & Blood Health

@fmdadvocate I have a history of cluster headaches, I also get headaches daily. I tried botox from a local nurse here that does it and NO HEADACHES! This was not through my insurance or anything so it was expensive. Has anyone else tried it?

Sep 3, 2019 · Fibromuscular dysplasia (FMD) in Heart & Blood Health

Awesome news about being included in the registry. Mayo was part of the patient registry, for many years. I am sure there is a valid reason they opted out. I am doing ok…. gearing up for my yearly MRI/MRA this fall. Seems each time they find something new, so it always makes me a bit anxious. Last time they found a AVM that I had not had in any previous MRI/MRA's. I have not researched FMD and AVM's much.

Aug 31, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi Elle! I had only nausea, no vomiting! Just running out for an errand and I want to be able to give you a better response, so hold that thought? Basically not everyone vomits.

Aug 29, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@jmmb !!!!!! OH MY!!!! a lot has transpired since we last talked. I was diagnosed with POTS years ago, not as severe as what you are going through! I often thought if I could just go in for an IV occasionally I wonder if I would feel better. So strange about your sodium!! I seen Sandra Taylor at Mayo- she is a Nephrologist and she was incredible! So sorry to hear about your daughter's wedding, but amazing that she changed it to San Diego! Refresh my memory, do you have joint problems? I am remembering something autoimmune?? I am just curious if yours MALS, Dysautonomia is also related to Ehlers-Danlos? That seems to be a common triad I have noticed in a subgroup of us.

Aug 29, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.