Hope

I do not get the flu shot for many reasons. I haven't actually had a "flu" in many years that is covered in the shot. Last year I ended up in the ER for fluids do to a nasty bout of gastroenteritis. I'm sure an actual influenza would be a great set back for me, but I can't justify taking the shot.

Symptoms seem to fluctuate for many reasons. Some of my triggers are the weather (hot/cold, rain/shine), the full moon, my monthly cycle, foods that I eat, stress, using too much energy in one day, viruses, etc. Most days I struggle to keep my BP up (except lately it's been good), but if I am coming down with a virus, my BP is normal to high. My heart rate can get out of wack even more than it is if I am coming down with something also. Allergies are also a big culprit for me. I didn't realize it at first because I used to get really bad sinus symptoms from them but now I don't, instead I get huge drops in my BP and a racing heart. That's why I love winter in the North so much. My allergic reactions are minimal at this time of year. I know, its very frustrating. I have so many times been in tears saying "I was normal yesterday, what happened? How can I be soooo not normal today?" I hope you figure out what causes your fluctuations. You may or may not be able to compensate for the triggers, but even knowing gives some peace of mind and makes you feel less out of control.

I thought it was on the "What to avoid" page on the DINET website, but I don't see that list on the new website. I could be missing it.

He would probably just say "the key is to eat a lot of salt and drink a lot of water". That's what I hear from every doctor at every visit as if I haven't been loading on both EVERYDAY for 2 1/2 years. But I'm sure that's what he would say, and throw on some compression socks. There's nothing deep going on there.

I hope everybody had a decent day! As good here as I could ask for =)

LMG, Good advice =)

Thanks guys. Interesting, I used to be an over achiever also. Sometimes I wonder if I burned myself out. My daughter even more-so than I was, I'm hoping when she is done with college next year she can slow down. I would hate for her to end up like this.

I saw this on FB. Horrible! I can see it happening, probably a lot of people with chronic illness can relate with being told their symptoms are in there head and/or anxiety related. You would think by now this kind of thing would be a thing of the past.

I don't know about chocolate, but all that sugar would have thrown me for a loop =)

I just wrote a whole post in reply and lost it! UGG! Ok, what I said was... I agree with "Badht", going gluten free and dairy free helped quite a bit. More recently, I gave up peanut butter and it has made a world of difference. Also, if I eat a whole egg, by BP drops like a hot potato. I know this but once in a while I eat one anyway thinking I will get away with it. But I don't, it always drops. Now I can eat eggs baked into things like bread, etc. (gluten free bread of course), maybe because it's just a little egg at a time that I am consuming. Food sensitivities are not my only POTS triggers, but I can help control this area at least. The weather and hormones are also triggers, but I have less control over those. It seems like a weeding out process. Pay attention to what your body is telling you when you eat or do activities, take meds etc. Other people may not believe you with triggers or symptoms, but they don't have to live in your body =) I hope you find some relief.

This is a very encouraging thread!

How long were you off work? I hope it continues to go well!

Thanks! I'm not sure now if it was this site or another one that I saw a video on this.

After a long symptomatic spring and summer with symptoms lingering into the fall, I am on the upswing. The cool weather is my friend! Cool weather, low allergy levels, and I gave up peanut butter, and this month most days I haven't even needed my meds! Praise God! Also, wearing good compression socks every day. I put them on before my feet hit the floor and they are helping tremendously! Just wanted to share a little hope with my relief to those suffering out there. An upswing for you could be right around the corner =) God Bless and have a good day! Praying for all of you!

We have to keep our heat between 65 & 68 or I'm overheating. I have to careful of what clothes I wear. Layers work well so I can take off or put back on as my temp fluctuates.

Thanks Jackie, that's a good idea. Jesse, They don't have drug recalls on midodrine specifically. I was talking general drug recalls, and yes they do have them constantly. You can sign up at Drugs.com to have them send you email updates on recalled drugs. It gives me a little piece of mind with everything my family takes.

Thanks for the heads up! I've gone back an forth on this issue, avoiding tests. This definitely sheds some light!

Thanks guys/gals. My new ones are by EON. Never heard of them. Still haven't taken them as I still have some of my other bottle left. I am trying to keep my bp up other ways, but I know there are certain triggers that I cannot control so I will need them of course. I keep thinking of trying something else altogether anyway since I feel they keep me in a yo-yo pattern with my beta blocker. I would like to treat the dysfunctioning autonomic nervous system, instead of just the constant balancing act of the OI and Tachy. That's probably my fault though as I keep denying trying any new anti-anxiety drugs that are suppose to help regulate it. I have tried a few with side effects I cannot get used to, so I'm gun shy of trying any more.

Who manufactures your midodrine? Global has been my manufacturer, now I have a new bottle and it has a new manufacturer listed and the pills are thinner. Of course any change in my pills makes me nervous being that there are recalls ALL the time, so I may feel a little better if I hear of somebody else taking them from the new manufacturer without a problem. Visit us http://mykitchen-4all.blogspot.com/

I cannot work at this point. Time will tell if I'm ever able to work again. I hope you are able to finish college!

One of my docs mentioned this to me last year, but this is the first I've seen in in writing. Thanks for posting!

That makes sense.

I have knee-high and waist high compression hose. If my legs are aching, I like the waist high. If I am wearing them just to help with my blood pressure, I really like my compression socks because they are more comfortable that the hose, at least when it's cold out. I would LOVE an electric wheel chair, but since I have a wheel chair already, and somebody has to be with me anyway when I go out I haven't bothered to see if I could get one covered. My walker was covered. It's a nice one with wheels and brakes and a seat. My blood pressure monitor was suppose to be covered, but they rejected it even though I did everything they told me to do to get it. This reminds me...I get tired of people asking me why I'm using a cane. So instead of trying to explain my current condition, I've been just telling them, "Because TODAY, I'm well enough that I don't need my wheelchair or walker" I don't know, maybe I just need a better attitude!

I think I would call the doctor or pharmacist to see if that's a reaction.

My son has the new one, I will ask him if he has any problems with it.