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mngirl 03-20-2005 06:10 PM

It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
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 03-20-2005 08:22 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
Lisa, I have wondered how you are and how the test went. Thank goodness you had the test in the hospital. I know it seems rather hopeless at this point but you are a very big step closer to having your problems worked out. Getting diagnosed was the hardest part and that's done. It has to get better from here on. I guess finding medicine that will do what you need it to do will be the next thing that has to be figured out. What is the next step?

Sorry you had such a difficult time. It sounds like you really went through hell.

heb12 03-20-2005 09:48 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
Hi Lisa,

I, too, was watching for your next posting...hoping everything had gone okay with your testing. It sounds like you've had one heck of a couple weeks, but if there's anything positive to come of it, you now have a diagnosis! It sounds like a horrible thing to experience on a daily, hourly, minute-by-minute basis, but it also sounds as though you are going to have a lot of medical support and interest seeing as you are so unique! I'm sure they are going to want their "case study" to have a positive ending!

I hope you start to gain some strength back and that every day gets a little better for you. Thanks for letting us all know your experience!


sadie-mae 03-20-2005 11:07 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

Thank God you are okay! What a horrible experience. I never imagined something so terrible would happen. I have been worried that you haven't posted but thought it was for a good reason (that you got your diagnosis and had already felt so much better yu didn't have time to post!)

It is painfully ironic that such terrible things had to happen to put you in the hands of those who could figure it out. Now it makes so much sense that your primary symptom was dizzyness. No matter how we all think we get it-there is always another angle to examine things from. No wonder some doctors can't figure it out sometimes!

I am happy for you that you have answers but want you to be able to feel better. What were the results of the adrenal testing they did at Mayo (what tests did they run?) Did they measure aldosterone and renin? I am just curious because they sure found answers. (That tilt-table sounded particularly fabulous ; ) )

Let us know what is going on as you feel up to it. I want to learn more about your diagnosis.
Please take careful care of yourself. You've been through alot!!


mngirl 03-21-2005 06:41 AM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
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!


goody2shuz 03-30-2005 05:49 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
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:

mngirl 03-30-2005 09:15 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
I am going to the main Mayo Clinic in Rochester, MN. At this point I am not sure if the beta blockers are doing TONS of good. It has slowed my heartrate when I stand up. That is staying pretty steady. However, when I am up and walking around I can only stand about 50-100 feet before the pressure in my head and chest are terrible and then I start to get dizzy. It was so bad last night that I had to lay my head on the counter and cou;dn't even pick it up to look at anything. My husband almost had to carry me up the stairs to go to bed! Ia m not sure what has triggered this latest episode. I am going back to Mayo on Monday for additional tests and hopefully some additional/change of medication.

I am also dealing with a possible irritated vein in my left wrist, which may be a blood clot.

When it rains it pours because on Sunday I also found a lump in my right breast which I am going in for a mammogram and ultrasound tomorrow.

Then it is back to the internal medicine doctor to try to convince him to allow me to go back to work, but maybe in a wheelchair just so I can work safely and don't have to try walking around to do my job. I am also going to ask him to inject my shoulder/neck with some novacaine and lidocaine mix, just to try to relax stuff so I am not getting such bad headaches.

Nice life right now, eh? It is reallu taking it's toll on my oldest child as well. We are talking with a social worker tomorrow at his school, he is starting to get anxiety and a little depression over all this.

Anyway...What are they doing for him in the hospital at this point? All I am doing is on beta-blockers and going to physical therapy in hopes of getting myself back upright and doing it safely. I hope things work out for him. Keep me updated.


goody2shuz 03-31-2005 09:04 AM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
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:

AmyRS 03-31-2005 05:21 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
Just thought I would post to say that I too have been diagnosed with POTS after a TTT that made my heart rate increase 40bpm upon standing.

I'm curious to find out what they're saying about the adrenal connection - I have a cortisol insufficiency (although they're not saying Addison's) and I've suspected that the two conditions are somehow linked.

BTW, I tried 2 beta-blockers and they made me feel much worse. Right now I do lots of salt and Gatorade.

goody2shuz 04-01-2005 08:05 AM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
Lisa & all ~ My brother is still awaiting the results of his blood & urine test that have been sent out to the Mayo Clinic since they are the ones that run the tests for this Pheochromocytoma. Once those results get back the doctor will discuss his treatment plan. I am alomost hoping that he has this tumor so they can rid his body of it's affects. Over 98% of the time it is benign and requires surgical removal which can be done laproscopically. Otherwise the doctor has told him if he is negative they would like to put in a pacemaker because when he is lying down his pulse & B/P are completely normal & if they put him on the meds to help him stand up he could bottom out while sleeping and would need the electostimulation of a pacemaker to insure his heart doesn't stop. So that's the update.....he's on Catapress and sittiing up but still with a big headache and unable to walk without passing out. Hopefully we'll have more news on Monday.

Lisa.....I hope you are doing better and that the meds will help you out too. BTW....the doctors do not say my brother has POTS but if it is not this tumor they believe that he has some permanent damage to his Autonomic Nervous system that will require regulation of medications in order to control it for the rest of his life. I am praying that it is the tumor....I think that would be the better of the two diagnosis'. .......Goody

goody2shuz 04-01-2005 06:03 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
A further brother will be going for an MRI this evening. The doctors feel that he needs to have a pacemaker before they can proceed with regulating his meds in order to get him to a sitting/standing position. The doctors have seen his worst tremors today which are convulsive in nature and his pupils are unequal but he is coherent. His B/P and pulse double to 230/190 & 180 when sitting up even on one betablocker. His pulse drops to 40 when lying down and so they cannot increase his meds safely without a pacemaker.

The doctor explained to my brother that he has a call in to a top neurosurgeon in Maryland who is known to surgically correct the damage in the autonomic sympathetic nervous system via brain surgery in severe cases like my brothers. If the tests come back negative for the Pheochromocytoma they feel that this may be the way to go and my brother will be transferred under the care of this neurosurgeon in Maryland. My family is somewhat relieved that at least something will be done to help my brother get back to a normal life. Will probably know more on Monday.......Goody :wave:

goody2shuz 04-04-2005 06:35 AM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
Lisa ~ Haven't heard from you in a while....I hope that means that you have been busy getting back on your two feet and that things are going better for you. :angel:

Goody got some good brother is finally able to walk after being on the meds for 48 hours. However, the doctor will be in to speak with him sometime today about having a pacemaker inserted within the next few days. Apparently he is on Catapress, a betablocker, as well as Lobiferol, and anti-seizure to control the tremors and they seem to be doing well in terms of getting him to ambulate without passing out. However, his pulse has gone down to the 20's while sleeping so that's why he'll need the pacemaker. The doctors seem to think that he can stay on the lower doses of the meds but the pacemaker will also allow for adjustments in the future if need be.

So...I guess that's pretty good news. :D Lisa, please post here with an update...for you have been in Goody's thoughts & prayers.....Goody :angel:

goody2shuz 04-06-2005 02:55 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
Okay, Lisa.....Goody is getting a little worried here. See you haven't been around in over 5 days. Last post by you speaks of looking for pain management. Just wanted to let you know that Goody is thinking about you and hoping all is well. Besides, it's getting pretty lonely on this thread ;)

Yesterday my brother had the pacemaker put in. Prior to having it put in he confided in me that he hadn't slept in over 4 nights because each time he drifted off he would wake up startled by the feeling of his heart almost stopping (apparently his pulse was down in the 20's with the meds) Thank goodness the pacemaker is now in, however, he developed severe chest pain and they ran an emergency echo and Chest X-ray to check for a lung puncture or fluid on the heart that could be a complication following the insertiion of a pacemaker. Just got a call from my SIL that everything's okay and they plan on discharging him home sometime tomorrow. They gave him a pain med that seems to have worked since he is now comfortably sleeping, thank God :angel: So now he is equipped to regulate the meds without it putting him at risk for bradycardia (low heartrate) Prior to the pacemaker he said the meds were definitely helping but once he got back to usual activities they may have to be adjusted.

Heartland ~ you expressed concern on my other thread that I may have concern that my daughter's problem may have something to do with my brother's. I don't think that is the case but I do worry that she may have an arrhythmia that often goes undetected in teens and kids until they are playing some type of sport and suddenly collapse, often fatally. I believe now they have defibrillators at most schools for that purpose because of this becoming a problem and if they were available some of these kids could have been saved. And so next week the EKG, Echo, and 24 hour test should tell us more. I did ask K. if she was drinking those super caffeinated sports drinks because too much caffeine could do this and she asssurred me no and that this is happening everyday a few times a day. So I don't want to ignore it. Most likely is normal....both my girls were worked up a few years ago because my dad had a mitral valve replacement & it is hereditary and being that K. was fainting they wanted to see her every few years and we got a clean bill of health at age 14. So....we'll recheck things just to be on the safe side. Thanks for your prayers & friendship. You are one of the very rare friends in this world that I truly cherish :angel: Hugs.....Goody :wave:

mngirl 04-06-2005 09:31 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
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!


sadie-mae 04-06-2005 09:43 PM

Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)
I know I keep asking this (I am sorry) but have they tested your standing and laying down renin and aldosterone levels? Are your electrolytes always normal on bloodwork? Are you on florinef as well as the beta blockers?

Are you on full replacement steroids for the Addison's yet?

I read your posts and my heart goes out to you. I can tell you are confused and not entirely sure of what they are telling you. That is why I am asking. I am sure all of these things have been done, but just in case-it is all a part of Addison's treatment required for most. I want you to be able to maximize your Addy treatment to be able to battle the POTS.

Please take care of yourself,

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