Leigh8

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Thanks Troy!

Hi all, I was just wondering if you all go to the ER for fainting. I faint pretty regularly because I have NMS. When I faint when I am by myself, I never go to the ER because I know it's just my condition and it's not serious. But when I faint in a public place, particularly around people I don't know, people often call 911, especially since it can take me a while to wake up from it. So the ambulance takes me to the ER, they evaluate me, and of course find nothing because it is just the NMS. So my question is, can you just refuse the ambulance? Whenever the ambulance is called, I feel like they don't ask me whether I want to go or anything, they just take me. I am usually too out of it to really protest, but maybe I should. Also, do any of you wear medical alert bracelets with your condition? I am thinking maybe if I put my diagnosis on it, they will realize it is not serious and not take me to the hospital. Thoughts? I am really tired of the ER!

Wow I am surprised 4 people drink only 20 oz or less! I wonder why....I have always had doctors tell me to drink a lot of water to help with dysautonomia as dehydration can really enhance symptoms.

I'm sorry I do not know the answer to your question. Has your doctor already prescribed the midodrine? I would try it and see. I take midodrine and have no flushing, and I think most people don't have issues with it. The drug is very short lasting (4 hrs or so), so any flushing it may cause you would presumably last only briefly. But, hopefully you will have no issues with it, and can start feeling better!

So sorry to hear that. But remember, he is just one doctor, and there are plenty, plenty more out there to help you!

I do not take it but am considering it too. Looks like it raises blood pressure in some people, which could be good!

Sorry I am not sure about the labetolol, but just wanted to say CONGRATS on your pregnancy!!

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I have not had any issues like this with compression socks, but perhaps they were too tight? There are different degrees of compression - 15-20, 20-30, and 30-40 I think. So you could start with a low level of compression, and work your way up if you want. If you go on amazon, they are a lot cheaper. I got mine from there (jobst brand, which is medical grade) for $25. Good luck!

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On Average, How Many Grams Of Salt Do You Consumer Per Day? Also, how do you get your salt in? Certain foods, tablets, etc?

I take .2mg florinef. It's helped me a little bit and my blood pressure has gone up somewhat, but I am still very symptomatic. Depends on the person though, so unfortunately you won't know until you try it! I haven't had any side effects at all.

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imapumpkin - how much sodium is in smartwater? I haven't had it before, but maybe I should look into it. Thanks!

I have this same issue! When I am using the computer at work, my right hand goes almost numb with cold. My left is usually cold too, but not as cold as the right. I have to constantly rub my hands together, sit on them, etc. to warm them. Not fun. Brrrr!!!!

How many ounces of water/liquids do you drink a day?

Are you taking any new meds, or had a change in meds recently? Perhaps that could be causing it. Either way, I would talk to your doctor. Good luck, and I hope you get some relief soon!!

Ginger, I too wish I had some good advice, but I just wanted to say I am so, so sorry. Do not blame yourself. This is absolutely NOT your fault. What he did was incredibly wrong, and it is even more wrong for him to use your illness to justify it. What kind of local support system do you have? In the past, I have seen a therapist for relationship difficulties, and I found it very helpful. Perhaps something you might find some comfort in. Sending good thoughts your way..... xoxo

Thanks for the advice everyone! HyperPOTS - how did you know that you were hypovolemic? Is there some sort of test for that?

I have very bad lightheadedness and brain fog comes along with it. I cannot concentrate, I get lost very easily, and I feel like I'm just in another world. The only med I've tried, and currently take, is florinef, but this doesn't help the brain fog. What kind of meds would help with this??

ohh my god, YES! I spend like a year and a half in therapy and seeing a psychiatrist for my "generalized anxiety disorder" even though I never felt anxious. The docs somehow convinced me I was though. They said I might not actually feel the anxiety, and it all just manifests as dizziness. Two years later I got the dysautonomia diagnosis, and now I understand it was pre-syncope and low bp.