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New Here - I have POTS and Addison's Disease


mngirl
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I was recently diagnosed with POTS (in March) after a 12 day hospital stay. I was actually admitted to our local hospital for a final test for Addison's Disease and unfortunately, that test sent me into an Addison's crisis (you guessed it...the results were +)...After 8 days they transferred me to the Mayo Clinic in Rochester, MN.

Anyway...Things are going horribly at this point. Mayo sent me home with some beta blockers and told me to learn to live with the POTS! I have been working with my Internal Medicine doc here to try to have a normal life. The only thing is that I am having other problems ON TOP of the POTS which are making all this awful.

I also have:

* An occiptal nerve problem - I hit my head back in July '04 and am still having issues.

* I had an ulnar nerve transposition in April '04 - the dr cut a nerve to move the ulnar nerve. I traded one pain for another, and this one they can't fix surgically. So I am having Lidocaine infusions done twice a week to tamed down the pain.

* I was first diagnosed with Addison's in August '04. I questioned the results this past February - that is why we did the final test in March (it was a Metryapone test - which I ended up having an Addison's crisis from. Funny thing is, my dr wanted me to do the test at home, but I demanded that it be done in a hospital - I got lucky that I was there!)

I started having MAJOR dizzy spells in Feb '03. I was having 15-20 spells where I was about falling down. I doctored for a year, everyone said it was an inner ear thing, but all those tests came back neg. So I stopped doctoring. Then when I got my head, I started seeing an internal med doc...he diagnosed me with the Addison's. We had the dizzy spells under enough control that I could live...

Then I requested a definitive test for the Addison's. Half of the tests I had were +, the other -...so I asked for one last test...the endo decided on the metryapone test. That was AWFUL...45 min after taking the 10 almond size pills it was like I was throwing up gasoline. That just threw everything into a MAJOR tailspin. While in the hospital I couldn't walk alone because the dizzy spells were so bad. They finally started watching my heartrate and blood pressure and realized that just sitting my pulse was in the 90s and when I stood would go into the 140s-150s. So they shipped me off to Mayo...they did the tilt table test and that came back + for a POTS diagnosis. So, they put me on Nadolol, which has helped with the racing heartrate when going from sitting to standing. But I was still having issues with being up more than 3-5 minutes everything would come back...dizzy, lightheaded, sweaty, racing heart, etc....

I have been doctoring with my internal med doc since it makes more sense than going to Rochester practically everyday at this point. About 3 weeks ago, I started taking Midodrine. The day after starting it - life was GREAT! not a dizzy spell for almost 2 weeks...then WHAM...The spells came back WAY WORSE. That brings us to about today. This morning I was driving when I started to get this weird feeling...my vision started to blur...then the tunneling...I was able to pull off the road...then black...It was only for about 5 secs or so by my guess...but how scary is that!!! Today I saw my internal med doc while at my infusion and we are now going to up the Midodrine dose...keep the Nadolol the same and trying some Remeron. He thinks that there just isn't enough blood getting to my head...so we are trying this and if it doesn't work, then he says he will says that all this dizzy stuff isn't due to a blood pressure prob. My internal med doc thinks that the Midodrine started to work and then my body decided to start to fight it, for whatever reason, making it worse. So we are trying a higher dose with the hopes it stays helping.

I am so at a loss at this point...I think my internal med doc is too. It was so bad last week that they almost hospitalized me. I luckily avoided that but, man...

I didn't feel like Mayo answered my questions well enough. They basically said....here is your diagnosis...we don't know the best way to treat it...you just need to figure out a way to live with it...come back in 6 months!

Anyway...that is my story...life ***** right now...just not a way to live at age 32, with 2 little boys...I feel like I have tried everything and NOTHING is helping.

Anyone have any suggestions that I should be looking into?

~Lisa

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dear lisa, sorry to hear about all of your troubles.

but i must say welcome. i have a few suggestions, check out the what helps section on the home page, then look for the search at the top right side of your screen, then type in the subject that you want.

sorry to be short, but mother nature is moving quickly and noisily into our area and i must be brief(thunderstorms and tornadoe warnings) :rolleyes: welcome to south dakota-if you don't like the weather, wait 30 minutes it will change(local saying).

blackwolf

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:):lol::unsure::P midrodine does that it took me about 6 mos, till mine was regulated. Do you get migranes?? This episode sounds just like an aura from a migrane,been ther had that.?/??? I don't know the difference between addisona and pots forgive my ignorance and laziness to look it up. I'd discuss the headache thing with an opthamo;ogist. Luck and blessings Miriam
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Hi Lisa,

I just wanted to let you know that dizziness is one of my major problems. I saw a gazillion drs and went through a bunch of tests. My doctors kept telling me it wasn't related to the POTS. For a while they thought I had an inner ear problem, but after 3 months of physical therapy, the dizziness came back. That's when everyone finally had to agree it was POTS. That was before I found the forum. I have since learned that dizziness is a pretty common symptom, which can happen even on days when your BP and HR numbers are "normal." You should of course keep going with all of the tests, but in the end it may turn out to be just a symptom of plain ol' POTS.

Out of curiosity, who did you see at Mayo, Rochester?

Feel better,

Rita

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Thanks for all the welcomes!

Ernie - I have been wearing compression hose since the diagnosis...I am not too sure whether or not they are actually helping though. Some days I think that they dom then other days not. I have not tried salt pills...I have just been trying to keep my salt intake up.

Rita - I am seeing Dr. Fealey.

Morgan - No, I do not have the hyperpigmentation. My cortisol levels have been very low and my recover from anything is ungodly slow. My body just can't seem to fix itself. Are you being tested for Addison's?

Well...Tomorrow (monday), I am headed on a jet plane to Birmingham, AL...I am a little nervous about the flying stuff since this will be the first time traveling while feeling this awful. I am traveling with my boss, who I know is dreading traveling with me as well LOL...I am hoping that this little trip will be uneventful.

On Friday, we upped my Midodrine to 7.5 mg twice a day. I think that it is helping a little bit, but not enough to be able to function all day without having a nasty episode. My doc thinks that we were fooling around with too little doses of it. It makes me awfully tired too.

So...I am signing off until I get back on Wednesday! Please keep your fingers crossed that nothing happens....

~Lisa

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Hi, I'm a bama girl and just wanted to wish you well on your trip here tomorrow. We have some awesome doctors who know a thing or two about autonomic dysfunction. Dr. Cecil Coughlan is the most revered (I think he is in Birmingham- UAB). It's ironic that your going to Birmingaham of all places. So.... I hope your trip is uneventful but if something does happen your in good hands- go to the UAB ER. Good luck!

Carmen

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Hi Lisa, I wanted to add my welcome to the forum. Also, I hope your trip is uneventful but if you have a POTS episode, your boss will get to see first hand what you are trying to manage. Maybe in the future, he/she will let you do conference calls instead of flying!!

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Hi Lisa, I know this is going to sound strange, but they thought my DOG had it and when I was investigating it, I realized I had every symptom, but the pigmentation. So I just thought I'd ask. I have never seen an endocrinologist and have an appt with my primary this week, so I may ask him to refer me. I don't need one, but the doctor won't see me without one. Weird. Thanks for your input! morgan

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Welcome! I'll once again give my byline of "sorry you have to be here but glad you found us." And I am sorry you've had such a tough time lately...unfortunately many of us can relate in some way either past or present.

I know it's already been mentioned, but your taking midodrine/proamatine only twice a day really stood out to me so I'm mentioning it again...you may want to at least ask about it...for me it makes me less tired, but it I let one dose wear off before the next kicks in, I crash majorly...just a thought...

Hang in there!

:-)melissa

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Hi Welcome to the board. I am sorry to hear you are having such a hard time. The medical system can be very frustrating.

Are you on fludrocortisone for your addisons? My friend with Addisons takes it daily. It also helps POTS. I take it and it has helped quite a bit.

DawnA

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Lisa, welcome to the board--sorry to hear you've got so much going on with your health. I hope you'll get it sorted out and get effective treatments ASAP.

Nina

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I didn't feel like Mayo answered my questions well enough. They basically said....here is your diagnosis...we don't know the best way to treat it...you just need to figure out a way to live with it...come back in 6 months!

Hi Lisa, I'm new here too, although I've had POTS for years.

that is so frusterating!!!! that happened to me when I went to Vanderbuilt. For me they looked at everything we had tried so far. ( I was part of the clinical trials for Midodrin, had tried beta blockers, atenolol, and every other med they could think of out there before going) And basically told me well there's nothing else to try so go home and live with it..

It can be so depressing. But don't give up, I've been amazed at what I've been reading here and what all can be tried and adjusted to help. I'll keep you in my thoughts.

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