Garden Gal

O my goodness Pistol! What a ride! I'm so sorry

yes. and if one more doctor looks at my low heart rate and comments how I must exercise a lot and be in good shape I am going to scream.

yep. At least now I know I'm not the only one!!! I get winded etc when I drink hot drinks. Similar to how I feel from a steamy room or hot shower.

Yes, I struggle with this in the winter also. I also live somewhere with very little sunshine. I wish I had a grand helpful suggestion. I don't. But I can relate and I'm sorry. The compression hoes do help my energy, as does a low thyroid dose and some lemonade with celtic salt in it along with my med regeme that seems similar to yours. All that to say, I be I"m trying the same things you are and can relate. If you find anything helpful drop let me know.

yep on the leaky vessles, and desmopresin has been really helpful for me. I hope it is for you too. Was a bit of a rocky start but now I'm at a dose that seems to work for me. For me the twice a day dosing didn't work. I ended up with a smaller dose three times a day and an OK with my endocrineologist to take an extra dose on the days I'm peeing waaay to much. I also have a standing order for sodium at the lab so if I feel like my sodium is going too low I can get it checked even if it's the weekend and my doc is not in the office. I haven't needed to re check much now that I have my dosing figured out though. I hope it helps a lot for you. I also have a lot of food sensitivities, and for me I've noticed that when I eat stuff I'm sensitive too I seem to pee out a toooon. Maybe it's my body trying to get rid of it? Or extra leaky blood vessles due to increased inflammation? I'm not sure, and not sure if my doctors understand or believe me that this happens... but if I drink milk or eat certain kinds of cheezes. Bingo I'm puny, with an elevated heart rate and peeing like CRRRRAZY and so thirsty. Hope you figure out something that works. For me figuring out the food sensitivities and starting desmopresin has been life-changingly positive - a huge move towards stability. May you find what works for you!! I'm sorry for the hard journey.

searching, "ohio Ehlers Dalos" if you are on facebook and not part of the group already, will likely populate the support group page for your region. I'm sorry that you are struggling with this. I don't live in Ohio, but I know the page for our region has had resources and doc ideas for EDS/dysautonomia that I've appreciated.

Well i can relate on multiple levels. Except for I have been able to have some help with meds. I'm so sorry you have not. I as well feel notably better on prednisone and have wondered at the specifics of that. i have an ongoing interest in vascular permeability kuz it sure seems to be a key in what's going on, so that article is of interest to me. Specifically I suspect that vascular inflammation due to autoimmune hypersensitivity causing vascular permeability may be key to so very many symptoms categorized under dysautonomia. Could it be that the same underlying autoimmune hypersensitivity is effecting both neurology causing dis-regulation AND vascular inflammatory problems compounding the issue? And in my case I suspect that the immune hypersensitivity is not an autoimmune disorder per say, but a result of the many diet and environmental factors that are a reality in today's world... Those are my musings. Would love to hear more of your thoughts on that if they are along the lines of your reality. Aaaaanyway, I digress. I don't know if it would be helpful, but I thought I'd mention this: I have chronic sinus problems. I think some is infections, and some likely vascular permeability touched on above... But about 8 months ago my ENT started me on Azelastine. I feel like I do when I'm on Prednisone! Without the negative agitation, etc. It's like the pressure, brain fog, out of it etc is just improved. Maybe i'm just on a good run on the health front, that happens sometimes, but I suspect the Azelastine has a big part in it. I could take Fluticasone nasal spray because it messed with my heart rhythm.... but this seems to be working for me. In the US it's over the counter, so I just thought I'd throw it out there in case it made a difference for you. I'm on a cocktail of other meds that have been of great help to me, this one seemed related to whatever happens in my body when I'm on prednisone. Best of luck, GardenGal

Maybe it depends on how functional you are? I was pretty not functional. For me, having a few meds has been life changing. It took some uncomfortable trial and error, but I've been on the same meds for years now and pretty stable all things considered. You may ask about an additional option for when you are doing particularly poorly rather than something you have to use all the time...For example: It might be debatable, but my cardiologist and endocrinologist have said using midodrine on an as needed basis is OK. For me, that's great. Then I don't have to deal with the side effects (that are not nice) when I don't need em or don't have a lot planned, but I have a tool for when I go grocery shopping, or want to do something active with my kids, need to go to work, etc.

Second what Sarah T commented. I do feel like it 'sticks' better when not rushed in... but I'm talking like over 3 hours not overnight. What seems to work for me is doing it over 2-3 hours but keeping the IV in.... then if I need to re-do the next day I've got that option. For reference sake an adult has 4L give or take of blood. I expect it depends on your type of POTS though. I would want to do a second liter in 24 hours if you had kidney or heart problems or sometimes high BP like hyperadrenergic pots... but for me, as I tend to have issues with low blood volume, sometimes a few liters spread out by 12-24 hours gets me through a low patch.

Bailee, Don't be afraid to shop around. I've spent a lot of time in PT... so very helpful, with the right person. If you go somewhere and it's worse, more painful or they can't match exercises with the reality of where you are at.... try again with someone else. Don't give up. I've learned to stick with the PTs that are helpful and move on if one is not.

MattyT Thanks for all of this. I appreciate it. I often feel sad and hopeless that the progress in how he feels seems short lived and the things he struggles with come back around again and again. I appreciate your reminder that there is forward motion and that it he will likely grow to have a healthy and active life in whatever form that takes. Thank you for sharing your journey with me. I have been very pushy with a great many doctors and the progress fells like it's moving through a brick wall. And yet, we have had diagnosis. Found some things that work. He's functional now. making it through school most days. He has some meds that make a difference etc. These things are wins. Thank you for your encouragement. I hope it is ok, I have sent you a private message with a more specific question.

I have a teenage son with EDS and autonomic problems related to it. He has had a long GI history that is more stable than normal now, however now he's having a recurrent set of symptoms that I don't feel we're getting to the bottom of. I would love to hear from any of you who have similar or have suggestions for what might be going on, treatments or doctors in Oregon you have seen with a framework for EDS/dysautonomia Low left pelvic pain. It improves with passing gas, but seems to be there weather or not he's constipated, having diarrhea, or other GI symptoms. Comes and goes through the day but especially related to running. The upward motion of his hip makes it much worse. I expect both a GI and musculoskeletal component, but not sure how best to address. I wonder about diverticulosis, plevic floor etc. Thoughts? As he wants to be an active kid, this pain is limiting and pretty frustrating for him. Hard to run, do PE, if he's constantly having to stop with pain.

Dr. Shalhub looks like a promising option. Thank u so much

Hi all. Any advice on who to see to rule out vascular EDS in Oregon or Washington? My PCP has been fabulous - has done initial EDS screening score and sent me a load of info, gotten me in with cardiology etc but our local teaching hospital treats hypermobility types rather than doing specific vascular gene testing. Help? Ideas? Tks