Have they tried you on Mestinon to treat your digestive motility issues? It can also treat dysautonomia/POTS, exercise intolerance, and fatigue. It works by stimulating the vagus nerve and parasympathetic nervous system. Although it's a really old (and inexpensive) medication, it has emerged as a new option to treat multiple issues that are associated with Ehlers Danlos syndrome.
Thank you for the suggestion. I appreciate your support. I have not tried that one but I just did a quick google search. I don’t think my medical team would would approve. I briefly skimmed through a website and I have one of the “disease interactions”.
I have hypermobile type Ehlers Danlos syndrome, and I don't like the question about if I'm hypermobile/hyperflexible, either! I especially don't like to be asked that by doctors, as that question is as if they're doubting my hEDS diagnosis and are looking for me to prove it. I've run into too many incompetent/ineffective/dismissive doctors during my EDS journey. It should've been caught by age 21, and was highly suspected at that time. However, I wasn't properly diagnosed until age 38, after I had surgeries and time for my hEDS to cause permanent damage.
Hi, I’m so sorry that’s been your experience. The journey with EDS is not an easy one for most. A lot of people lack empathy and compassion (sometimes even close family members and friends) because they don’t understand and are quick to judge based on their limited knowledge and/ or experience. EDS is difficult enough on its own and so it hurts when you have to deal with a lack understanding from medical professionals and interpersonal relationships. I hope you are getting better care now! 💙
@@OliKeepingTheFaith Yes, my care is definitely better now. The bad experiences taught me that I need to advocate for myself to receive the proper healthcare that I deserve, and that I have the right to "fire" doctors for poor performance and "hire" better doctors. Thankfully I found doctors who will listen to me and are open to me learning all I can about EDS and teaching them how to treat my symptoms. After I started choosing my medications and giving my doctors documentation to support the decision to put me on those medications; I was able to get out of the bedridden state I had been in for a few years, lose 100 pounds, and gain muscle mass to stabilize my joints and address the muscle atrophy issues that had developed.
That’s awesome! I’m happy for you. It is definitely a learning experience when initially attempting to get treatment. I’m glad that you have found your way to get proper care and treatment.
We can’t get Kate farms in the uk there’s not many peptide elemental type feeds available here :( so I’m on Peptamen HN 1.3cal. I have EDS also plus a whole list of other co-issues and chronic illnesses I’m a nightmare lol x
Hi hi!!!! I have POTS and SVT too along with my EDS. I Take ivabradine for my POTS (does nothing for my svt though) the ivabradine doesnt affect BP so if you havent already definitely ask for it!!! Im on the highest dose and it does help the POTS. I start atenolol this week for svt but i dont see that helping as i have hypotension :S
Hi, I hope that the beta blocker helps! Thank you for sharing. ☺️ I am on ivabradine/ corlanor along with another heart failure medication. I appreciate the tip though.
I've heard good things about Ivabradine! I take Mestinon to treat my POTS, and that also treats my gastroparesis and intestinal dysmotility. A small nightly dose of Clonidine further helps to eliminate my POTS - it acts a bit similarly to a beta blocker, but doesn't have the side effects of a beta blocker.
@@OliKeepingTheFaith I'm surprised that your doctors wouldn't try Clonidine, since it's been around for a very long time and can be helpful in a wide array of off-label uses. Clonidine (or its sister drug, Guanfacine) is often the second-line treatment of POTS, if beta blockers don't work or produce side effects for a patient. Instead of keeping norepinephrine from activating the beta adrenergic receptors like a beta blocker, Clonidine signals the body not to release so much norepinephrine into circulation in the first place. My pain specialist is who prescribed my Clonidine, since it also has analgesic properties that he was familiar with. My neurologist could've also prescribed Clonidine, either for my restless leg syndrome or migraines. My primary could've prescribed Clonidine for my anxiety, insomnia, or ADHD.
