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Addison's Disease Message Board

Addison's Disease Board Index

I went into the hospital on the 9th for the metryopone test and I ended up in the hospital for 11 days. I ended up being ambulanced to the Mayo Clinic on day 8 and was diagnosed with POTS 3 days later. I guess only .185% of the US Population get it and I am now going to be a Mayo Case Study! I was told that this often get mistakening diagnoised as Addison's. The prednisone seemed to be helping because the medication they give me for this is in the same family.

So, something for all of you to look into as well. I was lucky. I was told that I was at 1 of 2 places in the world that would have been able to diagnose it. My dr is the dr that put the condition together! So at least I am in good hands. I just wish that I had more info.

Here is what happened this past week and a half...

Wed, the 9th I walked into our local hospital to have that final test for Addison's. I checked myself in at 7 p.m. At that time I had a splitting headache, but that was it. At midnight, the nurse came in bringing me 10 almond size pills that I had to swallow in order for them to draw blood at 8 am. At pill 4 it was getting nearly impossible to swallow anymore, but I continued forth anyway...NOT A GOOD DECISION. 45 minutes after downing all 10 pills I started to feel really sick. I called in the nurse to tell her that I wasn't going to make it. 3 minutes later I didn't even make it to the bathroom to throw up. I made it as far as the trash can, where I sat and threw up and threw up and threw up...It honestly felt as if someone poured gasoline down my throat and lit it on fire. I just about passed out on the floor of the room, but the nurse was FINALLY nice enough to get me back to my bed. This is where EVERYTHING starts to go BAD.

I was finally able to get some sleep but when I woke up in the morning my headache was at a 10, I was nauseated, had incredible stomache pains, and was awfully dizzy. So they started treating and medicating. It turned out that I ended up having an inflamed pancreas and something else.

With my headache being so bad, they decided to do ANOTHER nerve block at the base of my head. TALK ABOUT PAINFUL!!!!! 11 days later it STILL hurts - and BTW didn't do a whole lot of good. Here is one bad thing. They also gave me some medications to help with the pain, which ended up slowing my respirations down to 3 per minute!! My DH tells me the crash team was called in and they watched over me for quite a while. I had an AWESOME male nurse, who later told me how close I was to being 6 feet under. Unfortunately, this happened 2 more times while there. I couldn't get out of bed, sit up , ANYTHING! At about day 7, I was finally able to get out of bed to take about 6 steps to the bathroom, but ONLY with 3 people hanging onto me. I just wasn't getting any better and my dizzy spells were getting WAY WORSE.

Oh, the good news at this point, the medication that I puked up did get into my system and the blood draw was good - NO ADDISON'S!!! But then...what was it? They started REALLY monitoring my blood pressure and my heartrate. So they would take them both lying, sitting and then standing. It turns out that my blood pressure was all over the place everytime they did this but the major thing was that when I went from sitting to standing, my heartrate goes from 90 to about 130!!!! And no one knew why.

So, here we are at Tues. night a week later still feeling awful. My male nurse pulled my DH aside and told him to get me out of there because the doctors had no clue and they were guessing at that point. The next morning, they performed the same tests with the same results. At that point my DH asked at what point do we look to go to somewhere else for answers. Right then and there the Dr. said, "I think we are at that point and I will write the papers right now to trasfer you to Mayo Clinic." My male nurse was there in FULL support and said that he was going to get everything ready and that I needed to be taken by ambulance - it was an hour and a half ride. So they got everything ready and the ambulance guys showed up to get me. They gave me a little pain mediation for my head for the ride. was an interesting ride. I fell asleep right away and the next I knew I was getting a sternum rub from the ambulance guy because i was not responding AT ALL. BTW - it still hurts. Funny thing though, as much as it hurt, all I could muster was to open one eye. He said, "I need the other one open too!" So I tried, but then I had to shut them both again. Then I got yelled at. Needless to say, I tried REAL HARD to stay awake to answer his questions.

We finally made it to Mayo, got checked in and they got me up to my room. I told them that I had to go to the bathroom. The bathroom was right at the entrance to the room so the ambulance guys stopped the bed there, dropped it and got me to sit up. Then they they flanked me, asked me if I was ready to get up, I said yes. So I went to stand...I passed out. All I remember then was hearing...."Lisa...Lisa...Can you hear me? That was a valiant effort, but I think it is the bed pan for you!” LOL! So, I get in bed and meet my young buck doc, who looked liked he was 18, with braces all decked out in Harvard blues. (He ended up being great BTW). So Wed was a day of talking with TONS of doctors.

Thursday I spent all day doing tests. I had more Addison’s tests because my adrenal function was still abnormal, I had an MRI, an autonomic response test and a tilt table test, plus TONS of blood work. Talk about a day from hell. The autonomic response test was unbelievably PAINFUL! They ran electric current along my left side from hand to toe for more than 3 minutes straight. When they turned it on I swore someone had set my skin on fire. Even the testing crew came running because I was screaming. She was yelling, “It’s wet! It’s wet! You only have to last for 3 more minutes!”

Then came the tilt table test. They strapped me to a table and stood me upright, where they constantly were monitoring my blood pressure, heart rate, and a bunch of other stuff. I had to stand there for 10 minutes or pass out first. Nice, eh? As they started the test, doctors started walking in. And as the test progressed more came and went. There I stood in total agony and there they were whispering to each other, exchanging papers, checking out the computer screens. As soon as they stood me up my heart started to race and I got majorly dizzy. At about 8 minutes I thought I was going to make it. I felt like I had my breathing under control and I was actually standing okay without the dizzies. Then the nurse said “Two minutes left.” Ten seconds later, my legs fell from underneath me, my heart started to beat uncontrollably (I think it was in the high 130s at this point) and I was just about to lose it when they tilted me back. I just broke down at that point and the nurse was there trying to reassure me that I was going to be okay and they had gotten all the information they needed.

So Friday I waited for the docs. They came in and told me that I have a VERY RARE condition called Postural Orthostatic Tachycardia Syndrome (POTS). .185% of the people get this! I guess I have to say that I was very lucky because Mayo and my doctor would have been one of only 2 places in the world that would have figured this out. My dr. is the dr. that put this condition together! So at least I know I am in good hands. I was told how rare I was and that they were going to be doing Mayo Case Study. I feel so lucky! The young doc also told me to watch out because once all the neuro geeks there hear about me they are ALL going to want to get their hands on me. LOL.

Anyway...This all basically means that my body cannot handle any change of position well. That even means something as small as turning can send my body into a nasty spell. My blood pressure is fluctuating, but the major problem is the heart rate. Going from lying to sitting can send my heart up to the 130-140s easily. My body then produces too much adrenaline, which then causes a drop in blood pressure, which then could cause me to pass out. There are TONS of underlying issues with all of this. Unfortunately, there is no cure, no real treatment plan. It is all a hit or miss. I am supposed to eat as much salt as I can get my hands on. Drink at least a liter of Gatorade a day. I am supposed to stay away from things that are going to be next to impossible for me to be away from (i.e., sugar and carbs) One thing I have read that can help is getting a pacemaker! Imagine that at 32!

At this point, I cannot walk more than 40 feet, if even that and I cannot stand for more then 1 minute before I feel like I am going to collapse. I cannot turn my head without getting EXTREMELY dizzy and my headache is KILLING me. I honestly am not sure how I am going to live like this. If it doesn’t get any better then it is right now, I am not sure what I am going to do. This is NOT living at this point. I can barely make it to the bathroom and to bed by myself. I can’t do ANYTHING with the boys. Even having them sit with me is hard because I am SO UNCOMFORTABLE. I feel so guilty that I can’t do anything for them. I can’t even be around them playing because the loud noise is too much for my head! And get this...I am supposed to be back to work on Thurs! At least the dr had orders that I could fluctuate my hours for the 1st week to see how things were.

The medication they have me on is NOT working AT ALL at this point. So I am already getting VERY CONCERNED. Tomorrow, I have to go and talk with physical therapy to try to get into a overall conditioning program since my whole body has been totally devastated at this point. I lost 11 lbs. this past week and a half. My muscles and everything are totally gone from sitting in that damn hospital bed.

I hope you all find out some answers too!
tcnj_mom -

I am not exactly sure what the next step is. Neither do they. They have put me on some meds they are hoping will help, which haven't yet. It is all a total hit or miss. I have been told it is all about learning to live with it - nice, eh? Unfortunately, this testing stuff has REALLY made it bad. To the point of making it to the bathroom alone is hard. I need to start a physical therapy program and try to get my body to learn to function in some form without crashing on me. All I can say is, it is really hard to know the difference between a heart attack and the chest pains associated with this. I have even read that some people end oup passing out, ER teams think the patient is in cardiac trouble, which in this case in not truly true. People end up getting pacemakers put in. Which as awful as that is totally helps and basically ends this problem, just starts the pacemaker problem then. So if this doesn't get any better maybe that is an option. But I can't imagine that at 32!

sadie-mae -

When I got to Mayo, they reran the cortisol test and the cosytropin tests. Both came back low, but they feel that my adrenal function is there. Today is my last day on prednisone!!!!! I gained SO MUCH WEIGHT on that stuff - but I lost 1/2 of it in the hospital! 11 lbs gone, just like that! Now I am on beta blockers. The prednisone seemed like it was working becasue it was in the same class of medications used to treat POTS. I am just concerned that what they have me on now isn't working...I may have to request to go back on the prednisone since it was working.

All I can say is that I wish I would have gone to Mayo a LONG TIME ago! I live only 90 minutes away, but I had just had enough of doctors. I guess it was just all meant to happen, unfortunately. Now it is time to try to figure out how I am I going to live with this.

I hope all of you find some answers. Hopefully, not in the same manner I did. I would not ever suggest that metrypone test to anyone! Just don't do it! Good luck to all of you. I will still check in to see if anyone has any questions!

Just checked my email and it seems that there is a slight improvement in the pericarditis my brother has but not what they had hoped. They are putting him on prednisone hoping that it will resolve some.....if not by next week they intend on moving one of the internal leads of the pacemaker which they feel has caused irritation to the heart....they want to leave that as a last resort. My brother is fed up with the pain and limitations this is putting on his life.

Heartland....thanks for the prayers....I can feel them all the way in Cancun.....between my brother and my back feeling good. :D There´s some overcast so I am treating myself to some cybertime while Tom is out trying to catch a sailfish :eek: I will join him next time.....he´s checking it out to see if I can take the rockiness of the boat out at sea....We´re having a great time...youngest daughter won the limbo contest last night :bouncing: Wish I could say I could do the same ;) .....Goody :wave:
No big news on my brother.....hopefully the prednisone is doing it´s job.´re sense of humor is always intact.....of course I meant the left and believe it or not I am use to the meds now...feel as if they don´t even affect me in a bad way anymore...must be the vacation and relaxing effects :bouncing:

Tom caught a 89 inch sailfish and 4 ft barracuda :D :D He´s a happy man to say the least.

Goody chickened out on the karaoke....turned out the first singer was rather professional and no matter how good I may think I am I couldn´t hold a candle to daughter wasn´t intimidated & held her own. ;) But I have been listening to "Wind Beneath my Wings" on my K´s ipod that she prerecorded for me along with some caribbean tunes. I did win at BINGO last night....a bottle of tequilla for Goody & a T-shirt for Tom :jester: Goody won the biggest prize....not bad for this lucky gal :D

Well....the time is winding goes too fast but it was just what I needed. Missing you and all here......Goody :wave:
[QUOTE=heartlandguy]If your brother is improving or stable now, I would hope that means your vacation will be worry free. I think you've said that you don’t care for Tom to mount his trophy catches for display in your home... so what will he do with them?[/QUOTE] You should know that Goody is always open to compromise. The deer is not debatable however since we both have a love of the water the sailfish is measured with a photo takent & may look good in our it may be a good memory ewpecially if it is not the "reel" thing ;) Thank God we are not big fish eaters...that makes Tom a catch & release man

[QUOTE=heartlandguy]With 5 shutoffs installed, the pet project is a completely empty room and minus some drywall. It will start looking better soon.[/QUOTE] Yipee...Mrs. H must be jumping for joy :bouncing:

Plan on checking my email...hoping some good news regarding my brother is there....this would be day #7 on prednisone so I would hope he has some positive change.

Tom took the girls horseback riding....I´m soaking up the sun and getting ready for "happy hour". Miguel knows me well and is there for my order right at the start time :jester: K. is making friends with alot of the Mexican males :eek: She´s determined to have a guy in every country ;) What´s a mother to do :cool: .....Goody :wave:

PS- Just checked my brother is back in the hospital....they plan on removing one of the leads of the pacemaker that is irritating his heart to a different location I believe tomorrow. Will keep you posted....Goody
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...

Jen & Lisa ~ It's been rather quiet here, just thought I would check in and also give you a little update.

Jen ~ I hope that the meds they started yo on for MS are continuing to give you some relief. Please give us an update so we know how you are doing.

Lisa ~ You sounded quite miserable last time you posted. How is your BP doing without the evening Naldalol??? I was hoping that somehow you would adjust and it would improve things.

Well Goody has an update as brother's chest pain has returned and his doctor thinks that he may be rejecting the pacemaker and starting with an infection again. He is back on the prednisone and will see the surgeon sometime this week/early next week. I just found out that his diagnosis is Autonomic Failure and very rare. He was beating around the bush when I asked him exactly what his diagnosis was and it doesn't sound good. Apparently it will be a case of juggling around meds in order to allow his blood pressure & pulse to function somewhat normally. It's difficult to even understand how this happened....but it only gets worse with stress and my brother's life is full of it. He's on a third marriage, has 6 kids, 2 ex wives and lives his life with visitation schedules I couldn't even manage. His newest wife is wonderful in terms of being supportive but it's almost as if his body is reacting to the craziness in his life. My 16 year old daughter is staying the summer with him as a mother's helper which I hope is taking some of the stress off of him. From my sister in laws reports she is of great help to them and manages the kids well allowing my brother and SIL some time to relax and go out on their own to recuperate from daily activities. I do find some comfort in knowing that my daughter is in a way reducing some of the stress.
I guess I will know more next week about what comes next.

I hope to hear some updates from everyone else as well. Please know that you are in my thoughts & prayers ~ Goody :wave:

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