Wow Jen!!! Your story sounds EXACTLY what I am going through!!!!! They have me diagnosed with both Addison's, POTS and RSD (in both my right elbow and the back of my head). I honestly couldn't believe reading your post...Almost word for word what I went through.

At this point, I am on TONS of medication. Here is what I am on:

* Nadolol - For the rapid heartrate that I get from sitting to standing.
* Prednisone - For the Addison's Disease
* Lamictal - For the RSD
* Methadone - For the pain
* Midodrine - For the dizziness for when I am up longer than 3-5 minutes (this I just started since Friday and it has been working great!)
* Mobic - For the extreme chest pain I have been having
* Aciphex - For the nausea that I have started to have
* I am also having Lidocaine infusions twice a week - they run from 2-6 hours per day. This has been the ONLY thing that has taken the pain away in my elbow. Once we stop treatments, the pain comes right back.

I am not sure that I can answer all of your questions, but maybe I can try to answer them by what I have been going through so far!

It is just nice to know that someone else has gone what I went through. I too thought that I was going crazy too because I saw so many docs that weren't able to tell me ANYTHING! They all thought I had an inner ear problem too.

Wow...Glad you are here...

~Lisa

I am actually afraid to even say it...things are actually going VERY well. My dr. put me on a few new meds last week and they are doing wonders!

I started taking Midodrine for my bad dizziness that I was having after I was up and walking around for 4-5 minutes. I have been taking the meds only in the morning (normally you take it 3 times a day, but not less than 4 hours before bedtime, since it could cause your blood pressure to shoot up by just going to bed!). It is working, but I can start to tell that is wearing off in the early evening. So today we add a dose in the early afternoon. I am hoping that that totally helps. I have had VERY few dizzy spells at all and have had no issue with being up and around - it has been GREAT!!!!!

Then I was getting AWFUL chest pains, having trouble breathing. I was taking Bextra (which was recalled, but was working great) but then couldn't get anymore, so we switched to Celebrex but that I had an allergic reaction to and it put me in the ER (I couldn't breathe and my throat started to close), so the final option was Mobic. After day 2 - no chest pain, no trouble breathing! The only bad side effect is a burning scalp - which I can put up with since it is only really bad about an hour after taking it and it lasts for a few hours. So today we also upped that to include an evening dose, since I am starting to feel a little bit creeping in in the evening.

I am also having Lidocaine treatments for my right elbow and my head. They also have been going well...no problems during treatment (which I was having TONS before - I started to even have kidney problems). But it has completly taken care of the burning behind my arm and I have noticed that it also has started working on the majorly painful spot within the inside of my elbow. The only problem is that once we stop treatment the pain comes back. So I think that we are going to talk about an infusion pump that will constantly pump in Lidocaine! Maybe that will completely make it go away. Right now I am going in twice a week for 2-6 a piece to get pumped full of Lidocaine. The only bad thing is that it is not working AT ALL for my head. I am still getting major headaches and the muscles in my neck are totally cramping constantly. I am not sure what to do about that anymore. They are telling me that they think Botox injections would work, but my insurance refuses to pay for it. And I cannot afford a $1000 per treatment. So I am not sure what to do about my head.

Here is the only bad part, last night my 2 year old son threw a toy at me and broke my nose (this will be the 3rd time it has broke in 5 years!). My older son broke it when he was 9 months old (he had a temper tantrum and threw his head forward and crushed my nose). Then my 2 year old broke it when he as 1 - he also was having a tantrum. Then last night. My 2 year old did't like something my husband said, so he threw the toy - and it smacked me right between the eyes and POP!, pain and I couldn't see. Then came the purple under the eyes and the bridge of my nose started to swell. This morning it was really red and the spots under my eyes were bruised - but at least make-up helped to cover it up. Unfortunately, my daily dosage of methadone was doing NOTHING this morning and it got worse while trying to work at my computer. My eyes were straining too hard. So when I talked with my doc I asked if I could take anything on top of the methadone. So he told me that I could add toradol on top of that. At least that has taken the edge off the pain. It still hurts to the touch, but at least it is not the throbbing pain I have had all day.

So...things are finally go well. The only thing is that things are taking a while to heal. I have tons of IV sites from the past month or so that are refusing to heal and go away. I am very concerned about my nose not fixing itself. I am guess that this is due to the Addison's. I have upped my daily dosage a little to try to help.

Also, the past 2 months I have started to get lumps in my breasts. The 1sy one I found got me into the doc right away. They checked it out and said that it was just a cyst. Well, now I have found another on the other side, and it is MUCH bigger. I asked my internal med doc (not my family doc who I went to for the 1st one and whom I am supposed to see this next month just as a followup) about it all. And he said that the Nadolol that I have been taking can tend to cause these type of things. I have never had anything like this in all my 32 years and then I get 2 within 2 months? I am just concerned that this new one is something. So, I will see when I go in for my follow-up, even though my internal med doc thinks it is nothing.

So...Things seem to be shaping up...I hate to even say that for things may just start to fall apart and I will end up back at the beginning.

Thanks for checking in on me. I am still alive. I have started a new business, so I have been awfully busy getting that going. I finally have a littel energy to think about something else :)

Amazing what a few drugs can do, eh?

I hope everyone has a good evening! I will update soon!

~Lisa