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Welcome everyone! Glad you found us!

Hi Stacey, welcome back (though I'm sorry you have reason to)! Sorry no answers, I hope someone else will have!

Welcome everyone!

Have you tried our Physician's list? Here's a link: https://www.dinet.org/physicians/ Please keep in mind everyone that you cannot eleborate on a negative doctor's experience here at our forums. You cán communicate via pm of course!

I'm so very sorry, I have been in contact with her in the past. Thanks for letting us know Issie!

Hi Madisonjan7, being on here for many years I've learned that a lot of our members don't have POTS forever. Especially the ones who got POTS after a virus seem to get better after about a few years (there are articles on that which I can't find atm sorry!). I do have the purple legs while standing, I think a lot of us do! For some this comes in flares, for others it stays (it stays for me but with the right for me meds I'm contents with my level of functioning). I feel that it's always best to find a Dysautonomia specialist as they understand (which is comforting) and can help you getting back with the right for you meds or adjustments (like water and salt loading, compression stockings etc all depending on what type of dys you have so always talk to your doctor about that!). Hope this helps!

Welcome new members, glad you found us!

I'm sorry your doctor isn't more subtile Madisonjan7, but wé really can't tell you what is safe for you and what isn't. I don't know what your diagnoses is but POTS in itself won't cause you dying. Does that help you feel better?

welcome new members, glad you found us!

I shower in the evenings and sit on the floor while washing and rinsing my hair. I can't shower on a daily base unfortunately

You have a lot going on, so sorry for that. It is found that Ehlers Danlos can be a cause of dysautonomia for many so it might be helpful to get that figured out. There have been more topics on med sensitivity in the past, here are some links: (the topics are about medication sensitivity) I personally would hesitate adding another med (CBD oil) without talking to my doctor first. Hope you have a good dysautonomia specialist to help you decide what works best for you!

I'm dealing with low blood sugars as well. Not due to mestinon though. I'm on a low carb diet which helps a lot, nevertheless I do get too low readings now and then which I find very frustrating

wishing you safe "travels" Emily! Hope the recumbent bike will work for you!

Welcome every one!!!

You could just ask them to send you the data via e-mail/snail mail. They may ask you to pay for it but it may be worth it!

I agree with Yogini, you could ask for the data to get more info re hr and bp. You could work from there!

Welcome everyone!

Feel free to take part in this awesome project!

I think this is what is called HyperPOTS, several members here are diagnosed with HyperPOTS. If I remember well, clonidine is used in specifically this type of POTS to lower bp. Hope this helps!

In answering these questions, please be aware that you cannot elaborate on any negative experiences while naming hospitals/doctors. Just a heads up!

Welcome everyone, glad you found us!

As far as I know, anhidrosis can be part of dysautonomia. There is a test (using colored powder if I remember well) that is part of autonomic testing. Hope one of our members will chime in!

If I'm correct, dr Svetlana Blitshsteyn, who is in our medical advisory panel, is willing to work on line, you can find info on her here: Hope this helps!

You're right, I meant Prof dr Gert J. van Dijk, he is in LUMC (Leiden), you'd need a referral to see him! He is my dysautonomia specialist, we work very well together!

Hi Orion, I'm in the Netherlands too. Have you found yourself a dysautonomia expert? We have several and one is on our Physician's list here at DINET! Here is his info in case you 'd need it): https://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=41f9637ce5a73904d9e1de9729954a31&content_field_7=Gert&content_field_5=&&content_field_17=&content_field_1000=&&content_field_1002[1]=NL&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all