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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.

Well...it 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
[QUOTE=mngirl]

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!

~Lisa[/QUOTE]

Thanks, Lisa, for your update. Geeeez, I really wish there was something I could do for you. Doesn't seem fair that you have to live this way. The more you tell me about your situation the more it sounds like my brothers :eek:

Prior to all this my brother was on lopressor and then switched to Topranol XR. Then things got worse to the point of his hospitalization.....the tremors were uncontrollable and the headache & inablility to walk without passing out. The started him on the Catapress (betablocker) & Lobiferol (antiseizure/for tremors) prior to the pacemaker. Now that the pacemaker is in place they can safely adjust the meds wirhout his pulse decreasing to dangerous levels while sleeping. Sounds like by what you describe in your post you may be going through the same thing.

Lisa, my brother has been told that he will pretty much be on these meds for the rest of his life. Seems the best that the docs can explain is that somewhere in his nervous system there is falulty wiring that causes this. He just seem relieved that they have found some meds to get him back to somewhat a normal life. I guess my family is use to these sort of things......somehow God has equipped us with extra serenity powers needed to have the courage to accept the things we just can't change and to make the best of it. But, Lisa, that doesn't mean sitting back and knowing that something can be done to make your life better...in your case I say do not accept that you physically have to live like this....I think your doctor should definitely be looking into ways of getting you to function better & I say if he remains closeminded to this then go find another doctor. My brother's condition was BAD.....unable to walk at all and he is convinced that this weekend he will be out shopping for his son's Communion outfit!!!!

You and your family are in my prayers. I will continue to check in here and offer you support and let you know of my brother's progress. I hope to hear some good news from you soon.....Goody :wave:
[QUOTE=heartlandguy]Your brother is able to boat already? :eek: I'm sort of shocked he could do that so soon after the severe problems he had. That really is good news and reason to celebrate. I will keep your family and GBF in my prayers.[/QUOTE] Would you expect anything less from Goody's brother???? Even superglue won't hold that 6'6" guy :D When he told me that he had been out boating I knew that my worries were over for a while....just hope it doesn't cause a setback like my jumping jacks did :eek:

[QUOTE=heartlandguy]BTW... I'm sorry to hear you had a bad night. You must feel sleepy and flushed. ;) I hope you don't have anything serious developing, my friend. :angel:[/QUOTE] My friend, you never miss a heartbeat....I got up with my daughters this am and lazily went back to sleep until 11am....seems MBF did the same.....a metaphysical thing, I guess ;) anyway....I am feeling better....if it were anything to be worried about it would only get worse. I will keep you posted on my first thread.


Thanks again for being such a wonderful friend......Goody :wave:
Hi my name is Jen, i'm 30 yrs old and was just diagnosed with POTS this past monday.I'm married with a 3 yr old son. I was admitted in to a local hospital for testing after months of being very sick. It had started last november with uncontrolled nausea, vomitting then got worse with lightheadedness and dizziness to the point i was on my hands and knees crawling. I started getting severe headaches but took them as migraines because i have had them for years. It got to the point i could not function on a daily basis anymore and still can't. I eat salt out of the palm of my hand because the craving is so bad for it.

About 8 weeks ago my BP dropped in the dr's office to 62/40. My normal is 90/60. Was still coherent to my and my dr's surprise. LOL..Went once by ambulance to the local ER but they were clueless because of the dizziness said i had inner ear inflammation (We won't go there). I started getting severe low back pain and abdomen pain which lead me to getting admitted to a regional hospital last week.

I am fortunate to have a wonderful family dr that believed i wasn't nuts and thought i had addison's disease and wanted further testing. I saw GI had abdominal US done and an Endo..BP hit the floor he wouldnt tell me how low but i'm sure the crash cart was out..because i "surprised" him. I woke to a BP of 64/42 and HR of 99. That was when he believed it was addison's also.

Called Endo in and they still stim test because my cortisol was through the floor. that came back low normal..which my family dr still thinks its addison's..wants further testing.

They sent in a group of cardiologist that i asked for specifically because of getting severe chest pain into my ears and back thought i was having a heart attack. They did the table tilt test on monday i was fortunate did not pass out thank goodness, but my HR did go above 130 within mins of being tilted. Had to stand there 30 mins feeling dizzy, nauseated and sweating like a pig.

My cardiologist is a god sent explained that i have a rare disease called POTS that he maybe diagnosis every 2-3 yrs and has never diagnosised it in a woman of child bearing age. I don't know if that should make me feel priviledged or not..lol since he has been a cardiologist for over 40 yrs.

He has started me on Midodrine and Florinef, Reglan and Protonix..didn't want betablockers because of my bp. In the process of getting Jobst pressure stockings. The medication has worked somewhat.I have my good moments and my really bad holding the wall or crawling moments praying to get to the bathroom moments.

I have a full time job at a veterinary hospital that i stand all day..was stupid enough the day after coming home from the hospital to go back (wed) for a meeting and thursday (half day) paid dearly thursday and fri and now today.

My memory is worth nothing lately..but i guess lack of oxygen to your brain can do this. At least now i'm not crazy and i'm not alone.

My husband and i are taking it one day at a time right now not sure about working looking for other employment probably or might have to go on disability if it gets no better,i'm at a loss right now. I'm frustrated and starting to get depressed.

Lisa i hope you hav been getting some good days and Goody i hope your brother is doing better.

Jen
Hi Everyone..sorry its been a little bit. I got hospitalized for over a week again. Symptoms got increasingly worse after starting the floricef and midodrine so they sent me to another teaching regional hospital for some answers. What a waste of time that was. Basically got poked stuck and proded and was sent home with no more answers than what i went in with feeling worse than when i started. They tested for everything under the sun, ignored my low cortisol levels because i was negative when it came to the stimulation test for addison's. Took me off all my meds which made everything alot worse. The vertigo, headaches, nausea,vomitting and was constipated for 7 days before they gave me an enema and sent me home, nice eh. They insisted the vertigo and headaches were migraines sent in a neurologist who agreed with me they were not but they ignored that. Started me on partial anti seizure meds and migraine meds which did nothing of course.

They never consulted Endo and doubled my dose of florinef and midodrine and sent me home, got very ill at my parent's home yesterday afternoon, luckily had a follow up appt at my cardiologist office yesterday with the NP. She nearly flipped when she found out they totally stopped the meds and then doubled the midodrine which she said was way to high of a dose for me. Gave me more anwsers to my questions like it will takes weeks for the meds to work and i will have more bad HOURS then good hours at this point days don't count. Gave me scripts for Alavert for the verttigo may or may not help, zofran for the vomitting and lots of fiber, protein, salt and fluids in my diet will help and forget trying to work for at least the next 2 months minimum.

I'm glag your brother is improving so much goody, thats awesome. Lisa keep your chin up i know all about the bruises its unreal my arms look gross. Was never like this before. I hope your nose heals well and it will take time for the meds to wrk it will not happen over night hour by hour not day by day.

JEN
I know that I shouldn't have made any "Things are going great" posts the other day...because don't you know it, Wednesday things started heading backwards. I had a Lidocaine infusion on Tuesday, which went just fine...but then on Wednesday I started to get an awful, awful headache...things slowly just started to get worse.

On Thursday, I went in and had my new lump checked, which he said was a little big, PLUS he found another! (that night I even found another one!) He said that he thinks that it is just another cyst, but to watch it. If it increases in size AT ALL, I need to get my butt in and have another mammogram and ultrasound. If it doesn't change, but is still there in 3 mo (for a follow-up exam), then they are going to do the tests too. Hopefully it goes away. My concern is that the new one I found is up in the armpit area - which I hadn't checked before and neither did the doc. I am just going to watch it and see what happens.

Anyway...I go to another dr appt for my arm Thurs afternoon...the good thing is that I get to up my hours from 6 to 7 a day at work, the bad things is that my headache was getting so bad I could hardly hold my head up, my eye was watering AND I was to the point of throwing up. Then the dizzy spells came back FULL FORCE! I tried some additional pain meds for my headache - didn't help at all.

Friday the dizzy spells were awful. I almost fell in the parking lot and almost fell down the stairs at work. My headache was still awful. I had to go to another infusion on Friday...My doc came in to talk with me since I was telling the nurse how bad the past few days had been. He is just at a loss at this point. I am literally seeing him 3 times a week right now because of all of this. We thought we finally had the right mix of meds because I was feeling so good. My arm is going well, but everything else just seemed to take a turn for the worse. We were talking about the headaches...he felt the back of my neck and back, he couldn't believe how rock hard it was. So, after my infusion he wanted me come to his office for some trigger point injections. We think that going back to the chiropractor is a good thing , so I think that I am heading back there next week. As for the dizzy spells, he wanted to see how this weekend went before we decided anything. Oh...and it sounds like I could have to have the infusions 2 times a week for the next 6 months to a year! He is hoping that they may end sooner, but since I was sick one week and the pain came back immensely, he doesn't think it will any sooner. At least the infusions ARE helping though...one thing down.

I had my infusions - everything went well, although I slept through half of it. After the infusion I went to his office for the injections. Well. while sitting there I just about ended up on the floor - luckily I caught myself on the chair before that happened. He came in and asked how I was feeling since the infusion. I told him about the major spell I just had. He said, "I could have picked you up if I had too"...So I got up on the table to have him do the injections. He came and sat behind me on the edge. He stuck the first one in and MAN did it HURT (it normally only stings at first and quickly goes away). Then he was going to do the next one and I told him and I needed to move over on the table or else I was going to pass out and end up on the floor yet again. He grabbed me and told me he had a hold of me, that he wouldn't let me fall off. LOL. Then he injected me 3 more times. After the last one I couldn't breathe..I told him no more. He was going to do one in my neck to try to calm the muscles down, but there was no way I was going to handle it. But we decided to stop taking the Lamictal. One drug off my schedule. The last time I tried stopping it, the headaches were way worse. So, we'll see what happens here.

So, today (Saturday) the dizzy spells have been VERY BAD. I am having a lot of issues standing up and walking too far. I almost passed out about 10 times in the store today. I am having a little hard time seeing out of my right eye, and the pressure in the back of my head is incredible. I am having these weird breathing feelings again too.

I just don't get it!!! I have done NOTHING different to set this off like this...I am going back in for another infusion on Tues and we are going to talk about how the weekend went. This just makes NO SENSE!!!!

I think that I am going to go crazy...Just when you think you are getting ahead, you go two steps backwards. I has just been the feeling the best I had in 2 years...I thought FINALLY...argghhh!!!!


Jen -
Try to keep your head up. As you can see, just because they think that they know what you have, doesn't mean that they can even fix it. I hope that you can find someone though that will listen to you. Please keep posting here and maybe we can help you find some answers.

Goody2Shuz-
How is your brother doing? I keep thinking of him each time I am talking with my docs about all this crap. I hope he is getting better.

Anyway...I hope you all have a good weekend and enjoy the holiday!

I'll update next week and let you know what we have decided to do.!

Lisa
Hey ladies!

I just thought I would send in a quick update...things are not the best. I have recently been trying to use a pill form of the Lidocaine treatment I have been getting for my arm, but it's a no go...MAJOR stomach cramps, nausea, diarehhia, and MAJOR chest pains...so, back to the IV infusions twice a week for 4 hrs each!

The dizziness stuff is such a mess. It was going well for a few days and then for the last 3 or so it has been awful again. I think my body is adjusting to the Midodrine dosage. Yesterday I went to the chiropractor for my headaches, and my blood pressure was 93/78! It was funny because at first the nurse couldn't find it AT ALL! Then she took it again and said that can't be right...I said 'is it low?' she said it was, too low and took it again. It was the 93/78, which I said, that could very well be right, I was feeling pretty lightheaded. She said that was the lowest BP she had ever measured! Funny.

Anyway...today was a very bad day. I went errand running with my 6 yr old and I was getting so lightheaded, I actually asked him if he could tell me our phone number. He could repeat it, so I told him that if something happens to mommy to tell someone to call dad at home. How awful is that to have to tell your 6 yr old that?

Something else that has been going on...anyone experiencing this? My vision is going...About 4 months ago I went to the eye dr (I has broke my computer glasses) to get new ones. I got some and they were working great. About the past 4 weeks or so I have to say that it is getting worse in a hurry. Sometimes to the point I actually have a VERY hard time seeing ANYTHING and have a feeling like I am going to have NO vision what so ever very soon. Today while driving I actually thought that my visions was going to totally black out. Not pass out, just lose my vision. I have made a comment to my dr. about it, but I think that it is time to take it a little more seriously. Anyone else having this happen to them? Then I come home and am so NAUSEATED I can't stand it. What a crappy day!

Well...Monday I see my dr again and have another infusion. (I see my dr twice a week right now!) We might try a nicotine patch to help with keeping my blood vessels constricted enough to keep the blood to my head. Oh...and how bad is this...I had a prescription called into Target the other day, but I was looking for some tylenol for my son first. Well, when I got to the counter the girl at the check out already had my prescription and said "Hi Lisa! How are you today!" I was so surprised she knew my name. Although I shouldn't be...I am at the pharmacy at least twice a week to get meds. I should own a piece of Target at this point!

Well...I hope everyone is having a good weekend! I'll update soon!

~Lisa
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 cried...it 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.

So....life 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!

ARRGGHHHH!!!!!!!!!!

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

~Lisa





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