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Addison's Disease Message Board

Addison's Disease Board Index

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

sadie-mae -

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

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

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

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!

[QUOTE=goody2shuz]we want the hot coming out of the right faucet[/QUOTE]Goody, I want the hot water coming out of the LEFT faucet. (Was that your meds talking? ;)) BTW, the pipes I'm working with now don't give off a pleasant aroma. :nono:

Songs for tonight? I suggest a Bette Midler song. Of course, you could do the Wind Beneath My Wings or the one of hers I like the best... The Rose. I hope you beat out your younger daughter for first place tonight and show her that Nobody Does It Better than folks like us. ;)
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
[QUOTE=heartlandguy]That is really good news about your brother compared to your last report. I know that really makes your day brighter. :)

I've noticed that praying for each other seems more effective than praying for one's self. Have you ever heard any thoughts on that?[/QUOTE]

The only thoughts would be my own....I think when we pray for others it's less selfish & giving of ourselves almost like a "communion of saints" working for God's purpose....which all goes to the Golden rule of loving others as we would like to be loved. Taking care of our brothers is a service to God so in serving God we are better able to serve one another. I gues that's how i see it, and like you, I do notice that praying for one another is more effective than for ourselves because sometimes when we pray for ourselves we may be asking for something that is not necessary but when we pray for others we are better able to pray for what is really needed. Like when I pray for you I pray for God to give me the words of wisdom to say what you need to hear at the given time. Thus I am praying for both of us...Goody :angel:
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 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.

Wow Jen!!! Your story sounds EXACTLY what I am going through!!!!! They have me diagnosed with both Addison's, POTS and RSD (in both my right elbow and the back of my head). I honestly couldn't believe reading your post...Almost word for word what I went through.

At this point, I am on TONS of medication. Here is what I am on:

* Nadolol - For the rapid heartrate that I get from sitting to standing.
* Prednisone - For the Addison's Disease
* Lamictal - For the RSD
* Methadone - For the pain
* Midodrine - For the dizziness for when I am up longer than 3-5 minutes (this I just started since Friday and it has been working great!)
* Mobic - For the extreme chest pain I have been having
* Aciphex - For the nausea that I have started to have
* I am also having Lidocaine infusions twice a week - they run from 2-6 hours per day. This has been the ONLY thing that has taken the pain away in my elbow. Once we stop treatments, the pain comes right back.

I am not sure that I can answer all of your questions, but maybe I can try to answer them by what I have been going through so far!

It is just nice to know that someone else has gone what I went through. I too thought that I was going crazy too because I saw so many docs that weren't able to tell me ANYTHING! They all thought I had an inner ear problem too.

Wow...Glad you are here...

I am actually afraid to even say it...things are actually going VERY well. My dr. put me on a few new meds last week and they are doing wonders!

I started taking Midodrine for my bad dizziness that I was having after I was up and walking around for 4-5 minutes. I have been taking the meds only in the morning (normally you take it 3 times a day, but not less than 4 hours before bedtime, since it could cause your blood pressure to shoot up by just going to bed!). It is working, but I can start to tell that is wearing off in the early evening. So today we add a dose in the early afternoon. I am hoping that that totally helps. I have had VERY few dizzy spells at all and have had no issue with being up and around - it has been GREAT!!!!!

Then I was getting AWFUL chest pains, having trouble breathing. I was taking Bextra (which was recalled, but was working great) but then couldn't get anymore, so we switched to Celebrex but that I had an allergic reaction to and it put me in the ER (I couldn't breathe and my throat started to close), so the final option was Mobic. After day 2 - no chest pain, no trouble breathing! The only bad side effect is a burning scalp - which I can put up with since it is only really bad about an hour after taking it and it lasts for a few hours. So today we also upped that to include an evening dose, since I am starting to feel a little bit creeping in in the evening.

I am also having Lidocaine treatments for my right elbow and my head. They also have been going problems during treatment (which I was having TONS before - I started to even have kidney problems). But it has completly taken care of the burning behind my arm and I have noticed that it also has started working on the majorly painful spot within the inside of my elbow. The only problem is that once we stop treatment the pain comes back. So I think that we are going to talk about an infusion pump that will constantly pump in Lidocaine! Maybe that will completely make it go away. Right now I am going in twice a week for 2-6 a piece to get pumped full of Lidocaine. The only bad thing is that it is not working AT ALL for my head. I am still getting major headaches and the muscles in my neck are totally cramping constantly. I am not sure what to do about that anymore. They are telling me that they think Botox injections would work, but my insurance refuses to pay for it. And I cannot afford a $1000 per treatment. So I am not sure what to do about my head.

Here is the only bad part, last night my 2 year old son threw a toy at me and broke my nose (this will be the 3rd time it has broke in 5 years!). My older son broke it when he was 9 months old (he had a temper tantrum and threw his head forward and crushed my nose). Then my 2 year old broke it when he as 1 - he also was having a tantrum. Then last night. My 2 year old did't like something my husband said, so he threw the toy - and it smacked me right between the eyes and POP!, pain and I couldn't see. Then came the purple under the eyes and the bridge of my nose started to swell. This morning it was really red and the spots under my eyes were bruised - but at least make-up helped to cover it up. Unfortunately, my daily dosage of methadone was doing NOTHING this morning and it got worse while trying to work at my computer. My eyes were straining too hard. So when I talked with my doc I asked if I could take anything on top of the methadone. So he told me that I could add toradol on top of that. At least that has taken the edge off the pain. It still hurts to the touch, but at least it is not the throbbing pain I have had all day.

So...things are finally go well. The only thing is that things are taking a while to heal. I have tons of IV sites from the past month or so that are refusing to heal and go away. I am very concerned about my nose not fixing itself. I am guess that this is due to the Addison's. I have upped my daily dosage a little to try to help.

Also, the past 2 months I have started to get lumps in my breasts. The 1sy one I found got me into the doc right away. They checked it out and said that it was just a cyst. Well, now I have found another on the other side, and it is MUCH bigger. I asked my internal med doc (not my family doc who I went to for the 1st one and whom I am supposed to see this next month just as a followup) about it all. And he said that the Nadolol that I have been taking can tend to cause these type of things. I have never had anything like this in all my 32 years and then I get 2 within 2 months? I am just concerned that this new one is something. So, I will see when I go in for my follow-up, even though my internal med doc thinks it is nothing.

So...Things seem to be shaping up...I hate to even say that for things may just start to fall apart and I will end up back at the beginning.

Thanks for checking in on me. I am still alive. I have started a new business, so I have been awfully busy getting that going. I finally have a littel energy to think about something else :)

Amazing what a few drugs can do, eh?

I hope everyone has a good evening! I will update soon!

Wow...Jen, you have had some time of it. I agree that the meds do take some time to take effect. I would definitely try what they perscribe for at least 2 weeks to a month and make adjustments from there. My brother is finding that a betablocker for the blood pressure (catapres) and an antiseizure med for the tremors and headaches is working well. I would try that combo for a did take him a good 3 weeks to feel better at least in terms of having some type of normalcy in his life again. And that was after almost a month in the hospital trying to figure things out and then back in for complications. Please know that there is a light at the end of the tunnel but that you are going to have to find the right doctors to get you there. Don't stop until you find one. My sister in law is a very take charge person, thank God, and she wouldn't stop until they got to the bottom of it. She told the doctors that my brother was still young 43, and couldn't live like that. And they listened. You & your husband need to do the same until you find a treatment that is going to work. You are so young, Jen, and shouldn't settle for anything less than a life that you can somewhat have normalcy. Please remember that. Give these meds a chance.....and yes, they shouldn't be taking you off them so quickly......some you need to be weaned off of. The doctor's you should be seeing are a good cardiologist and neurologist. They should work as a team. Find one or the other that you trust & have them call in the other that you need to follow you as well. That's what I would advise after you try this regimen for a few weeks. If you are not any better you need to go out & insist that they do something to get to the bottom of this. I honestly think you have a sympathetetic nervous system defect.....something rare like my brother that needs a good patient open minded doctor to treat. Don't let these doctor's intimidate you into accepting this quality of living...there is something they can do to make it better & you shouldn't stop until you find the doctor who will make it happen. In the meantime...please know that you are in my thoughts & prayers & that I am here to listen. (((((HUGS))))) ~ 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:
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, 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. 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!


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