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Addison's Disease Message Board

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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!
Hey Goody -

I am still alive - I have just had a long week. I had a followup appointment at Mayo on Monday, where I feel that I really didn't too many more answers. Basically they told me that yes, all of my symptoms (chest pain, pressure in my head, lightheadedness, diiziness, tremors, coldness, nausea, etc.) are all from POTS. He said that it definitely tells me that is what it is. He said though that until I was able to get back to some basic level of health, that these symptoms would continue as they are. It is funny that in your last post you mentioned that your brother felt like his heart was stopping. I just mentioned that to my doc too. I said that when I am asleep, I wake myself up because I feel like I have stopped breathing and it scares the death out of me. He asked my husband if he ever has seen me stop breathing, he said no, but he also hasn't been awake or there when I have felt this happen. I am concerned that it too may be from my BP and heartrate being too low. My blood pressure has been aroun 92/61 (which is definitely low for me) and my heartrate (when walking) is in the low 50s, so I can't imagine what it is when I am actually asleep. I know that my husband woek me up on the way to Mayo, I was napping, because he couldn't see my chest raising and lowering and he couldn't find a pulse.

Somehow I am supposed to do physical activity and "work" through the chest pain and the head pressure. I walked to the pharmacy and back at Target the other day and I SWEAR that I was having a heart attack. I know I wasn't but how I am supposed to handle going to physical therapy? I tlkaed with them, they don't know what to do and are afraid to have me there because something bad might happen. I have to talk with them tomorrow to discuss a "plan of attack" My doc wants me to get a treadmill and walk at least 5 minutes a day on it. Which at this point is WAY TOO much at a time. But he said that I need that to not lose any more of the muscle that I do have.

The doc says that he feels that the beta blockers are working. Which I do think that they are in some fashion. When I get up, the dizziness is not there instantly. However, after 2 minutes of standing, the chest pain and head pressure start, then the lightheadedness, then the dizzies and then the extreme nausea. Then I start to feel real faint. They did an e test on Monday, which I am waiting for the results of. They think that I am producing too much adrenaline. I am not sure if they are going to add meds depending on what those results are or not. But the doc is sure that is what is happening.

He also has me now wearing waist compression high panty hose 20-30 compression rate. He is trying to keep the blood in my chest and head versus my legs and feet. Also, I need to start on the pedialyte (not Gatorade) and eatting TONS more salt, which is very though for me since I do not care for the stuff.

Other than that, he basically told me that this is going to be a long battle, but he expects things to get better. I am just afraid that if they don't he won't admit it, and it will be to something I am not doing right. I hate living like this already.

Today I went to Walmart just to buy diapers for my son and I was so ill when I left there it was awful. I just sat in my car because I couldn't stand to start driving.

They are basically telling me at this point, this is what you have and you are just going to have to learn to live with it, and do it safely. Then having Addison's on top of all this is not good either. Also, for the RSD, I talked with my chiropractor today about doing trigger point injections for my shoulder/neck. Every 3 days he thinks they should be done. I talked about this with my internal med doc last week and he said, just let me know when. Also during this time I also hope to do the Lidocaine infusion as well. Hopefully between the 2 I will get some relief and then the chiro can get in there and do some work to loosen the muscles that need some relaxation.

Tomorrow I am heading to my ortho to have her take a look at my arm. It will have been a full year now since my surgery and it still is awful. So it will be interesting to see what she has to say, especially about the Lidocaine infusion. My mayo doc also thinks that I should go back and see a rehab doc there since he works on a lot of RSD cases. My work comp didn't take his diagnosis before, so I can't imagine that they would send me back. He said that I have Thoracic Outlet Syndrome also. Which they tests did show. I found out on Monday that I have it in BOTH arms too! Great, eh?

I should be an interesting next few weeks. Hopefully I will find some relief and get some more answers about all this. I still feel awully lost and that none of the docs really know what to do about it all. My Mayo doc says that he is more worried about me mentally than physically, imagine that? I do feel like I am going to crazy at some point, since getting no real answers is not the greatest feeling.

Well, i hope your brother starts to feel better. As afraid as I would be to have that done, I wish someone would at least maybe say that is an option versus having to live with all this crap. I can only take this for so long. Do is he on any of the meds he was on before the pacemaker? Are they thinking he will get rid of all the meds? Did they say what his chances of being back to normal are with that in? You will have to keep me updated on how his symptoms are doing.

I hope life gets better for him. This crap really sucks. It is also taking a toll on my family, as I am sure it has on yours. My 6 and 2 year olds can't really deal with this anymore.

Keep in touch. I will let you know if my ortho has anything interesting to say, or if I hear back from Mayo about my test results.

Have a great night - tell your brother to stay strong!

Hey Heartland :wave: I appreciate your asking for an update on my brother. Of course he is the first person I called when I got home (besides my mom of course) He is doing okay but did sound out of breath on the phone. He says that he feels a tremendous amount of pressure in his chest upon standing & is trying to get himself off the morphine for pain. He expressed his depressed state of having to be incapacitated for over a month now and I told him that I certainly understood that more than he thought since I have been going through something similar and told him that things would get better eventually and that for now he had to focus on keeping the stress levels down and working with the doctors in adjusting the meds in order to get him to a good quality of living. He's alot like his sister in terms of having difficulty being dependent on others and wanting to be active in life.....even more than me. So you can only imagine how difficult this must be for him. He's the one who plans on putting on that extension. He wants it done yesterday.

My mom answered the phone crying...she said that it was a really scarey week, at the communion she said she was afraid he wouldn't make it through the week the way he looked & then he came down with a raging SIL avoided telling me the entire truth so as not to ruin my vacation but my mom said that the day before my return he took a turn for the better once they resituated the intermal lead of the pacemaker on his heart. So......for now things look okay.....I only hope he continues to improve.

Thanks for your continued prayers and concern. As usual you're a terrific friend who continues to hold my hand through the dark moments....thanks for that.....Goody
Heartland ~ Spoke to my brother this afternion after playing phine tag most of yesterday. He is doing much the pain meds and steroids and will start back to work half days next week. He says that he is back to activities of daily living and is doing well but experiencing some pressure in his chest that the doctor says will resolve in time. He sees the doctor tomorrow for a followup. He is putting the extension on hold until the fall & is planning on putting in a hottub and some decking and doing some interior renovations that can be done over the summer. He is planning a trip to Long Island for Father's Day.....he takes the family camoing everyyear not too far from our summerhome & we will get together as we do each year. We go to the Riverhead raceway to watch the car races....and always end up having a blast. So....we will get to see each other soon, thank God. I really miss my brothers alot.....I use to see this one often when he drove once a month to get his daughter but now he's been flying her since she is almost 13. And with the gas prices it actually ends up being cheaper. looks like things are looking up in terms of everyone's health lately. Goody couldn't be happier. Thanks for your prayers......Goody :wave:
Well girls i'm almost at my wits end..the headaches are back full force..nothing seems to help i usually let it runs its coarse, which usually a day and overnight..starts with a bad dizzy spell. I have had blurred vision and loss of vision now at times. Cognitive skills have been having issues, can't say what i'm thinking or words come out slurred or not pronounced right. When i walk feel like i'm drunk most of the time with out the luxury of alcohol to get me Still waking up 2-3 times a night to go to the bathroom. Last week started with severe cramping in my legs nothing seems to help gets worse at night, endo not sure if that is a side affect from the florinef or not. Dizzy spells are still out of control woke me up 3 times out of sleep with them, get them sitting ,laying or standing and walking. Went to a neurologist was useless he gave me no answers and kicked me back to my family doc. Going to see another neuro and see what he says. Just confused about the cognitive and vision issues...not sure if it is POTS related or something else. My endo thought possibly the starts of MS which my MRI showed 2 small white spots the radiologist thought were secondary to demylating disease such as MS, gliosis or blood vessel ischemia. But no one wants to address that possiblity and says they are nothing and passes the buck to someone else, with no answers. Gotten to the point hard to do daily living , i can't shower standing the whole time have to sit 2-3 times, then dry off and sit , then get dressed and sit some more then brush my hair maybe if i'm not to exausted. I have been sleeping 80% of the day. I'm so angry and frustrated right now its unbelievable. My endo thinks i should maybe go up to Columbia University they are doing research on POTS and see what they say. My son doesn't understand i don't feel well at the age of 3 he wants his mommy to be chasing him around and having fun like we use to and i can't, it tears my heart up cuz i just want to be normal again and get some answers.MY dear , loving husband what can i say he truely is a gift from god...i think he is about to beat up some drs though..heehe if we don't get more answers soon. Cuz this isn't living, haven't driven in 2 months and will be almost 2 months since i have been at work, i'm sure they will not hold me job much longer and not sure if i can ever do it again anyway.

Lisa- i hope all is well with you and the medicine is working for you, i'm praying that it helps and you are doing well with all this unlike me. You are in my prayers

Goody-i hope your brother is still progressing well and not having any serious problems. Hopefully he is returning to a normal life for himself.

Jen :confused:
Hi Jen & Lisa :wave: Wow you guys have been busy and what I love about you two is that even though everything has turned your worlds upside down you still have great attitudes and look at things in a positive light which I truly believes makes a big difference in how things work out.

Jen....what is the latest??? Are the doctors still leaning towards MS??? I hope they caught it early enough that it won't cause you too much pain and debilitate you too badly. I think at least when they find out exactly what it is that we're up against and the treatment for it, even though it is something that we weren't prepared for, it makes it so much better to accept rather than living with the unknown and pulling at straws as to how to treat it. It looks as if you may have your life back, one that you can manage and overcome the obstacles that come before you. With your wonderful sense of humor and outlook on life...there is no doubt in my mind that you will be okay. So we have to wait another year for a baby....we'll be here to celebrate that good news with you when that time comes.

Lisa ~ I pray that they come up with a diagnosis and treatment plan that works for you as well. Do not worry about your 6 year old, so long as he knows that you are okay and that he is helping out and supporting you he will understand. Your family will celebrate, as will we, once they find the right treatment that has you feeling better as well. We will continue to pray for you until that time comes.

My brother is doing quite well.....I saw him Father's Day (well barely) he was so busy towing 10 kids on a banana boat with his jetboat.....everytime he came back in there were more kids lined up to go out!!! I had fun just watching him have fun after all that he has been through. I am sure that you guys will be back to living you lives again too. ;)

((((HUGS))))) & prayers ~ Goody :angel:
Jen -

Sorry to hear that is what you have...What testing did they do to determine that it was MS? They at first thought that maybe that is what I had when they started testing me ay back when. They have since then dismissed that, but with the vision problems I am starting to have, it really makes me wonder. It seems like I am out of the blue seeing all this stuff about MS and noting the vision issues you get with it - it sounds just like what is happening to me.

Today I went in to the dr today and had an ultrasound done on both sides of my neck to make sure that I do not have a blood clot causing the vision stuff. Afterwards I was feeling so awful (my neck, shoulder and back were KILLING me) I went and asked my dr to see me and inject those spots with something to reduce the pain. I LOVE my dr because he said no problem. Then his nurse was so nice and asked me if I wanted to wait in the waiting room or if I wanted to go lay down while I waited. So I asked if I could go lay down, and she put me in a room that was ice cold. So instead, she went and got the leather recliner and put it in a nice room, where I got to recline and close my eyes while I waited.

My dr came in and felt so bad...we talked about what was going on. I think we are going to do a MRI of my neck next week - we never did one since I hit my head - only a MRI and CT scan of my head. My chiro thinks I may have the herniated disc in my neck and today that is EXACTLY what it felt like. So he injected my neck/shoulder and back with some pain killer stuff. Talk about painful shots - I barely made it through. Then I went back to work and it got worse. He must have hit a nerve because I couldn't move my head or arm and the pain went down my arm and it even hurt to take a breath. I sat there and took a bit but at least it settled down a bit. It actually still hurts tonight. I am going in for an infusion on Fri morning so we are going to talk some more.

We also took away my evening dose of Nadolol in hopes my bloodpressure would go up. It has been pretty low lately. He said that if the dizzys don't get any worse, that he is going to put me on Ritalin, which he hopes may help. The past 2 nights I wasn't able to tell if not taking the Nadolol made any difference because I felt so awful and came home and went straight to bed. Well, tonight I was up and cleaning the house for company that is coming and man, I can tell I haven't taken it. I am now parked in the chair it is so bad. So, I don't think what he has planned is going to work!

Oh...and my dr thinks that my vision problem is due to the autonomic problems caused by POTS! He thinks that it is causing the lens of my eye to spasm which causes the vision problem. If that is the case, then there is nothing they can do about it, but try to get the POT under better control - and that seems to be the problem, getting that under control. sucks right now because I don;t know what to do anymore and I am in such pain, dizzy or nauseated ALL the time. I can't take this anymore...this just isn't how a person who is 32 should be living!


Anyway...I'll update when I can!


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