Leigh8

Perhaps it is a sign of thirst/dehydration?

SeattleRain - I will let you know if I find anything out! Have you had this blood test for venous oxygen saturation before? If so, what was your level? Thanks!

Foggy - I think you are thinking of pulse oximetry. This is different, it is based on a blood test. I really don't know much about it, it just said "venous oxygen saturation". It's probably nothing, but I am just so desperate to find a solution to my health problems!!

I was reading the ER report from when I went to the ER for fainting a while ago, and saw that my venous oxygen saturation was low, at 52%. The normal range is 88-94%.

Does anyone know what this means?? They never said anything about it to me in the ER. But I have had constant lightheadedness for 5 years, and wonder if this could be why? This is the only time I've ever had the blood test for venous oxygen saturation, so I don't know what my values usually are.

Thanks!

Hi all,

I will be moving to Denver, CO soon. Does anyone know of any good autonomic nuerologists / dysautonomia specialists in that area?

Thanks!

I developed dysautonomia in the summer before my sophomore year of college. Of course, being a college student with these kinds of symptoms is difficult, but I managed. I am glad I did not leave school because of my symptoms. I would have been sick whether I was at school or not – at least I was sick and got a degree though!

For me, sitting in classes were the hardest part, since my main symptom is dizziness/lightheadedness. I constantly felt like I was going to faint in class, which in turn gave me a lot of anxiety. I could never pay attention to the lectures because of this. I almost always went to class, but did most of my actual learning at home on my own through the textbook/readings. I learned to always sit near the back of class for an easy escape when I was faint, and to make sure I had water and food on hand too.

I had roommates and lived in crowded dorms all 4 years, and it was fine. I think it’s worth it to live in the dorms to help make friends. Also, I wouldn’t want to have been labeled as the sick girl or something by living off campus alone!

Don’t worry, I think he will do great!

Hope everything went well today!

I have the same diagnosis and I am symptomatic (lightheaded) constantly. Sorry I don't have an answer to your question, but you're not alone!!

Best of luck with your surgery, imapumpkin! Hopefully it will also help with some of your dysautonomia symptoms. Sending good thoughts your way!

bananas - did you try the 40 mg prozac? Did it work for you?

You can buy licorice extract and dissolve it in water. I bought mine at Whole Foods, but they have it on amazon too. You can also buy licorice tea. It's delicious!

I tried it for a while, but it didn't really do much for me. Once I started florinef I read that you shouldn't take it with licorice since they have similar effects, so I stopped it.

I agree with khaarina - benadryl works great!

Hi all,

I was just wondering what dosage of prozac you take, for those of you who take it. How high did you need to go in order to help your dysautonomia?

Thanks!

Good luck, Jacquie! Let us know how it goes. Crossing my fingers that you can find a treamtent that helps.

I work in health care and can tell you that you are definitely not the only patient to not take meds and follow doctors’ orders! This is EXTREMELY common. Don’t worry, they won’t yell at you. They won’t be surprised. Just be honest about what you are and aren’t doing. The worst thing, for the doctor and the patient, is when the patient isn’t honest and claims to be following treatment protocols when they are not.

I hope you feel better soon!

That sounds serious! I would call your doctor. Hope you feel better soon!

I have not used one before, but have heard they can be helpful! Make sure to use purified (NOT tap) water though, as using tap water can be dangerous.

I know a lot of us drink gatorade so I thought this article may be of interest:

http://www.nytimes.com/2012/12/13/business/another-look-at-a-drink-ingredient-brominated-vegetable-oil.html?pagewanted=1&ref=health

Abbyw, what meds do you take?? I am curious to see what helped your dizziness!

FarmerAmy - I think the salt tabs that HyperPOTS8 is taking have 1000mg NaCl and about 450 mg of sodium. So it is not 12-15 grams of sodium a day like you might think (that is what I thought when I first bought these salt tabs!) - more like 5.4 to 6.75 grams a day. Didn't want you to get the wrong idea!

Also, I have the same problem - I am not positive I have hypovolemia, but I too take florinef (.2 mg for me), lots of salt, lots of water/gatorade....and NO difference in my symptoms. Though I do get worse when I am really dehydrated.

I hope you feel better soon!

Thanks for the advice!!

Same thing happens to me! I am a fainter, so I am constantly worried I'll faint. Of course, the worry just makes my dizziness worse. It is awful....

I am actually thinking of seeing a therapist for it. Perhaps you could try that?

So I am thinking of cutting out caffeine in order to see whether it will help my constant lightheadedness. I currently drink about 3 cups of coffee a day. When I don't drink it for a day, I get awful headaches so I am a bit worried about cutting it out!

Does anyone else have any experience on cutting out caffeine? Did you stop cold turkey, or gradually decrease your intake?

Thanks!

If you don’t know whether you should go to the ER, you can always call your primary care doctor’s office and speak to either your doctor or the nurse. There is usually always a nurse on call. I have done this before. The nurse just asked about my symptoms. In my case, she said I didn’t need to go to the ER unless my symptoms got worse, and made me an appt with my doctor for the next morning.

Hope this helps!

No, I do not wear them when sleeping - I don't think it's necessary, and it says not to on the package. After time they lose elasticity, which you'll be able to feel, so you should replace them then. Hope this helps!