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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!
Lisa ~ My brother is hospitalized with the same exact scenario as you, in fact this happened to him 2 years ago & they worked him up for almost 2 months and diagnosed him with POTS. They put him on beta blockers too...started with lopressor and switched to topranol. He was pretty much okay on the meds but in the evening would get the bad headaches and would have to lay down. However....the other day he started with the unncontrollable tremors and a severe headache and cannot sit or standup without severe dizziness or passing out. He is back in the hospital since yesterday and being worked up for a condition called Phenochromocytoma ( a tumor on the adrenal gland). They ran the tests and have put him on Catapress and Libiterol. They feel he may have a problem with his Autonomic nervous system which is basically what POTS is considered.

I would appreciate any info you can share with me in regard to your treatment since it sounds so similar to what my brother is going through.
I hope that they find a way to get you back to a good quality of life....if it is any help once the meds were regulated my brother did well until 3 days ago. I will search to see where exactly the Mayo clinic is...I believe it's in Ohio if I'm not mistaken. good luck & I look forward to your future posts....Goody :wave:
Lisa ~ Thanks so much for sharing your progress with me. Right now my the latest is that my brother is responding to the meds...Catapress & Labetalol to the extent of it allowing him to sit up in bed and alleviates the headache somewhat. The endocrinologist is suppose to meet with him sometime today once all the urine, blood, and CAT scan results are back to let him know whether or not his adrenal gland is involved. So it's a waiting game.....

How are you feeling??? Did you have your mammo??? And what meds are you on???? I surely hope they start kicking in so that you can get back to some quality of life. And how are your headaches??? I thought you were still at the Mayo Clinic by your post but I see that you are home. Please know that you are in Goody's prayers and I will keep you posted as to my brother's progress and look forward to keeping up with yours....Goody :wave:
Well i can honestly say i have now passed out for the first time in my life. I had a really bad day Tuesday and was sleeping on the couch (thought for a short nap) which ended up being 3 hours! When i woke i took time to sit up then stand up and i didn't feel "right" wham bam everything went black and when i opened my eyes i was on the couch again..thank goodness soft landing. From there just got worse vomitting (my husband is probably getting jealous of the toilet since i spend more intimate time with it lately). The dizzy spells were horrible just kept me in bed or would of been on my hands and knees crawling to get where i wanted to go.

My husband and i were trying for a second child when all this came to a hed, so went to my GYN yesterday for some information and input, Well, well he strictly forbid pregnancy right now (no duh!) until he gets more info and we get a better handle (i hope) on this.

Today is a new day having dizzy spells already and waiting to see the ENDO, hopefully soon going to call again. The medication has its good moments and its not so good moments that it helps, wears off fast.

As far as my job my boss is very understanding right now. I have a very physically demanding job so i was told i can't go back to work until this medicine starts working all the way or i get better.

Lisa hang in there they may have to up your dose of medicine the midodrine and floricef do help but your body adjust quickly to them and they start to wear off. At least for me thats what i'm finding.

Goody i'm so glad your brother is back to work, thats great i wish him well

You are both in my thoughts and prayers...

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:

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