kady05

I would find out from your doctor why he calls Florinef a last resort, though. Is there a medical/chemical reason why it would be likely to harm you? If so, you might want to skip Florinef and wait to see what other options a specialist suggests instead. If your doctor just prefers to exhaust other options before starting you on a medication, and if you feel that the non-medication options are not working well enough, you might want to consider trying Florinef for a little while under your doctor's supervision. If it helps even somewhat, you'll not only feel better but you'll also be able to tell the dysautonomia specialist what it's doing for you. If it doesn't help, the specialist can rule that medication out as a possible solution or perhaps gain some clues from the way that you reacted to it. One of the things that Dr. Low said he appreciated about my sizeable (!) portfolio of records was that by the time I went to see him, I had already had so much testing and standard treatment-trying clearly documented (e.g. Florinef, Midodrine, etc.) that he had a good idea of which direction we should probably go next.

I think he used the term 'last resort' because he said it can mess with your Potassium levels? I think that's what he said. Plus, he didn't want to jump right to meds. if it was something we could handle without them, which is what I'd prefer to do. I hate being on meds.

My symptoms have been great the past week, and I really haven't changed much in regards to more salt, fluids. I make sure I drink a lot of water, or Gatorade though, but haven't really increased in the past week. I did notice that my dizziness/shortness of breath was worse during the week before my period started. It happened to be my first period since going off of my birth control, so it was the 'real' thing. I think the birth control helped keep my hormones straight, which in turn may have helped my symptoms. So, I'm considering going back on it soon. The only reason I went off was because we wanted to rule that out as a cause of symptoms.

Thanks for all the advice!

On that link you posted, I noticed this: standing with one's legs crossed

I've always done this without knowing why. What exactly does it do? I find myself doing this lying down, too. Well, sitting too.

Whenever I can, I sit indian style. I do it because my feet are always cold. I sit on my hands when possible too, because typically they're cold as well. Other than that, not sure what it does!

I'm going to try uping my sodium and fluids before trying anything else medication wise, so we'll see how that works.

Here's the website I've been using to understand OI. The first treatment option listed is salt loading. They list foods that contain salt but I've found that salt water works best for me. I use Himalayan, celtic or Redmond's real salt. Our bodies require 2500 mg of sodium a day and if you're not getting that it can lead to other health issues. Low blood pressure is just one side affect of low sodium ... I'm holding off on taking any meds too since it seems like all I ever get out of them is what's listed as side effects.

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

BTW, I'd look at food intolerances and possible celiac disease / gluten sensitivity. John Hopkins states in this article that OI can come from food intolerances too ...

HTH .. Marcia

Thank you for that website, I'm reading it now. It's funny that they list birth control pills as a medication that can help symptoms. I actually went off of my birth control (I was on the NuvaRing) 2 months ago because I wanted to see if that could be causing the issues. I have actually said to my mom that I feel worse since I've been off of it. Interesting.

Sounds like you should go see a doctor specialized in dysautonomia. Where are you located? Something else you could try are compression stockings and midodrine. The main downside with stockings is that they are hard to put one. And midodrine is very short-acting, so if it doesn't agree with you, it will leave your system fast. I'd try that before sudafed. Midodrine lowers my hr--unlike sudafed. I'm on florinef and started it after midodrine-- for me I think they work together.

I'm in Chesapeake, VA.

Is Midodrine something you can get OTC, or does it need to be prescribed?

Forgive me for the long post, but I'm going to try to get everything out on the table to start with

Hi all, I'm 21yrs. old, and recently have been diagnosed with orthostatic hypotension. My BP has always run low (100/60-110/60), and up until recently, it never really affected me. I also have generalized anxiety, so for the longest time have geared all of my symptoms to 'oh, it's just my anxiety acting up'. I'm now realizing that these aren't ALL anxiety (although sometimes they do cause me to have anxiety once they start). I'm old enough now, and know myself well enough to know which things are anxiety related, and which aren't.

A few months ago, I started feeling dizzy upon standing. I geared it towards me being small (I'm 5'0", and about 95lbs., very petite), and maybe my blood sugar was low. I try to be very diligent about eating right, and eat small meals every 3-4hrs. I noticed that even though I KNEW I was eating right, I was still getting dizzy. It progressively got worse, and one day at the barn (I have horses), I stood up after sitting for about 45min., and everything went black for a few seconds. That is what made me make a Dr. appointment.

I've been seeing my Dr. since I was 5, so he knows me well. After telling him my symptoms, he scheduled me for a tilt table test. In the meantime, he told me to up my fluid intake with things like Gatorade, and stuff with sodium.

I had the tilt test done back in Nov. During the 'standing' portion, I was fine. From what I know, my BP stayed fairly normal (my average was 105/60 I believe, I can get the report if needed). When they laid me down after being upright for 30min., my BP dropped to 75/45. It took about 3min. for it to stabilize, and they gave me a bag of IVs during that time. I never really felt TOO dizzy, but I was laying down, so who knows how I would've felt had I been standing.

When I went and picked up the report for the test, I noticed that they didn't even put in there that my BP had dropped so low! I was really mad, because I had called my Dr. and he had said that everything was normal on the test. Then I told him how low it dropped, and he too was confused that they didn't include that in the summary. To me, that's NOT normal. My heart rate did stay 'normal' throughout the test, so NCS (I think that's what it is?) was ruled out.

So my Dr. basically said to keep up with my fluids, and if I was having a bad day, to try taking one Sudafed in the morning to see if that helped. I held off from taking the Sudafed, because I've never reacted well to cold meds. (I get jittery, rapid heart beat). I did take it a few weeks ago, and it made me feel like my heart was going to beat out of my chest, so I stopped that!

About a month ago, I got another symptom, getting out of breath doing simple activities, like going up a set of stairs, vacuuming, etc. I've actually had this issue for awhile now, but I had always based it on me being out of shape. I will say that even though I'm skinny, I'm probably not in the best shape anymore. I have ridden horses since I was 5, but in the past few months, I haven't ridden at all due to my dizziness, and getting short of breath. I feel like this symptom has definitely gotten worse in the past month. I'm also extremely heat intolerant, which started a couple summers ago. I never knew that this could be a symptom of low BP til I started reading about it.

So back to my Dr. I went, and he ordered and Echo & a Pulmonary Function Test. I passed both of those, although during the PFT I felt like I was going to pass out.

I went back on Dec. 29th to talk to him about the test, and while I was there, my BP went from 110/60, then 5min. later it was 85/60.

My Dr. has mentioned that we could try Florinef to see if that'd help me. He said it was a last resort, and that he really didn't want to put me on it. So right now I'm trying to decide what to do. Should I go see a Dr. that specializes in these 'issues'? Try the Florinef? Or what? I know most everyone here deals with this on a daily basis, so I basically wanted to see what others thought.

The dizziness, I can tolerate. It goes away after about 5secs., and I have never passed out. It's the shortness of breath, and generally being tired after short activities (like grocery shopping) that's the big issue.

So if anyone has suggestions, please let me know. I'm in SE VA if that helps. Hopefully I included everything needed in this post, but if you have questions, please ask. If you read this whole thing, thank you!