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Addison's Disease Message Board


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Lisa,

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!!

Sadie
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:
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 news...my 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:
Lisa,
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,
Sadie
Hey, Lisa......I think it's great your seeing a psychologist, I can imagine how all this must be taking it's toll on you. I feel so bad that you have to feel the pain and as dibilitated as you do...but I do think it's a good idea to be monitored closely with the PT in a hospital setting just in case. Hopefully the meds will start kicking in. sounds like perhaps you may need to have increased levels and the pacemaker as well. Perhaps that is something you may wish to discuss with your doctor.

Just received a call from my SIL.....both my brother's lower lungs have collapsed.....they have him walking around and using an incentive spirometer in which he has to take deep breathes to try to reinflate those lungs. I am worried....at least there is no chest tube in, then I would be really worried but my biggest worry is him catching one of those superbugs that they can't treat that lurks these hospitals. They intend to do a repeat echo to check the amount of fluid on his heart...if it hasn't improved they will use a needle to aspirate it out tomorrow....eeeek my poor brother. My mother is beside herself & I am spending my time to try to alleviate her fears which is difficult because I share the same fears myself. Please keep him in your prayer as I already have you in mine.....Goody :angel:
Heartland ~ Please do Goody a big favor & double up on those prayers. I almost would like to cancel my trip after just speaking to my brother....he sounds just awful and I am in tears at having to go so far away without knowing what's going on with him. My SIL said that he is not doing his breathing exercises as I instructed and that they doubled his morphine for the pain. The increased pain sounds like he must have more fluid buildup on the heart...I'm just so scared. My SIL says that she expects that they will have to surgically remove fluid from his heart next week with a needle. I told my brother that I wanted to cancel my trip & he was insistent that I don't or he would never forgive me. I promised him to wake up every morning with the sun & offer up a prayer for him....but my heart is heavy because I'm afraid something may happen to him while I am away. I really have a heavy heart at this moment....and I can almost feel his pain. I feel better just knowing that you will keep him in your prayers.......Goody
Goody, I really enjoyed your reply. Even though I am quite far removed from your brother, you have always made me feel like I know him. It makes me very happy to think that my prayers may have helped in some way. I imagine a chorus of prayers from your many friends and family are what made the difference so Iíll accept your thanks for all of us. :) Please update us periodically with his condition so we know that he is continuing to improve. :angel:

I saw from several of your posts that you must have had a wonderful Motherís Day. With your girls watching movies with you and passing the tissues, it must have been quite a sight. I believe you told Genster before how much you love lobster so the two pounder must have been heaven. I hope the beef for the surf and turf was from NebraskaÖ you deserve the very best! ;)

We had a great day, too. Motherís Day is the perfect day for good news. Thanks for sharing yours. :)
[QUOTE=heartlandguy]Goody, I really enjoyed your reply. Even though I am quite far removed from your brother, you have always made me feel like I know him. It makes me very happy to think that my prayers may have helped in some way. I imagine a chorus of prayers from your many friends and family are what made the difference so Iíll accept your thanks for all of us. Please update us periodically with his condition so we know that he is continuing to improve. [/QUOTE] Yes....you seem to have the honor of knowing my family extended & all.....Goody just can't hide the fact that family is important to me and so you are bound to be pulled into the midst of it!!! I will certainly keep you updated and I expect it to be good news for a while. ;)

[QUOTE=Heartland]I saw from several of your posts that you must have had a wonderful Motherís Day. With your girls watching movies with you and passing the tissues, it must have been quite a sight. I believe you told Genster before how much you love lobster so the two pounder must have been heaven. I hope the beef for the surf and turf was from NebraskaÖ you deserve the very best!

We had a great day, too. Motherís Day is the perfect day for good news. Thanks for sharing yours. [/QUOTE] Yes....it was quite the Mother's Day :D Seemed to make up for some not so great ones ;) Would've been nicer spending it with my mom but I've learned how to share her with my brothers.....she was down in Charlotte with my other brother for my nieces Communion. We couldn't go because K. had an important college test to take.

Funny story about Lobsters....MBF who always gave me advice on dating, told me when Tom first took me out for a nice dinner to a seafood place...."Make sure you never order lobster....it's not only expensive but messy and if you really want to keep a guy you never order lobster!!!!" :nono: And for the longest time I didn't....in fact I think I didn't until after we were married :jester: I shared that story with Tom and he comically said....."She was absolutely right, because if I ever saw you eat a lobster the way that you do I might just have run the other way!!!!" But then again....he does know that I am better than one of our four fab women who sucks every bit of juice out of the legs and leaves nothing but the carcass :D She even eats the green digestive gunk :eek: Not, Goody, I know where to stop :jester: When I was pregnant with K. we went down to the Florida keys and Tom speared me a lobster while snorkeling & cooked it up for me....so although I was lacking in lobster in our dating years, Goody has never gone too long without her lobster :) ........Goody :wave:

PS ~ Do I sense that you have some good news to share as well?????
Hello all,

I wandered onto this site by accident while doing some internet research, but thought I should stop and throw my two cents in. Lisa, I also have POTS and have been dealing with it for four years now. Unlike you I was not diagnosed until a full year after I was bed ridden. I was misdiagnosed with Addison's and depression before figuring out for myself what was wrong. I have found a great doctor now and am doing much better. If you wanted to discuss symptoms, medications, or anything else just let me know. I probably won't be back on this board again, but you may email me at [ [i] please carefully review the posting rules - no emails [/i] ] if you'd like. I am finally beginning to get my life back again and would like to do anything I can to prevent anyone from going through the four years of hell I've been through.

Cheers,
Stacy





[i] [ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ] [/i]
Jen....I am so sorry to hear all that you are going through. I truly understand how frustrating it must be in seeing my brother go through the same exact thing. Although they originally diagnosed him with POTS, this second time they have splained to him that he has a defect in his sympathetic nervous system...sort of like a miswiring in which there is a break in the connection of the part that controls his blood pressure and heartrate. He still feels that pressure in his chest and not 100% but with the meds he is back to work on a part time basis and is slowly increasing his hours as he is able to. He is on Catapress and an antiseizure med for the tremors which thank goodness allow him to function. For a while there he was worried that this may not happen. It did take time for the meds to help out so please give the meds a chance to do their thing. I really hope that they come up with a treatment that will restore you to a somewhat normal life that doesn't leave you feeling so debilitated. I know that must be so difficult being young and having a small child. Please know that you are in Goody's prayers that things will improve quickly for you. And know that I am here if you need to talk at anytime or if you have any questions.

((((HUGS))))).......Goody :wave:
LIsa,

I too have POTS and many many other conditions. I am only 27. If you would like to email and talk to someone my email is [ [i] please carefully review the posting rules - no emails [/i] ] . I know how bad life is w/this condition. My heart rate went up to 190 just standing up. It is awful. Anyway, I hope to hear from you when you feel like writing.

Take care,
Suz




[i] [ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ] [/i]
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 while....it 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:
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
I am so sorry to hear that you girls are having such a bad time of things this week. Please know that I continue to hold you in my thoughts & prayers.

Lisa ~ Seems that only a week ago things were going so great for you. Perhaps it's only a matter of them adjusting the meds a little bit...it must be so frustrating feeling almost back to normal and then WHAM almost landing on your face while walking. Ireally feel for you and hope that things get better again for you. How are you feeling since the cortisol injection??? I wouldn't worry about going on the antidepressants. sometimes when you have to deal with a chronic condition and it's affect on your life you really need the antidepressants to help you through. I was on Wellbutrin years ago for a chronic back problem and it helped....you won't be on it forever but it'll help you deal mentally and emotionally with the limitations and changes that your physical limitations are putting on you. And it's a good idea to wait a little bit until you adjust to the other meds.

Jen ~ Sorry to hear about your setback as well. I know this all must be so scarey for you and I hope that soon things will get better. I think your GYN is right about holding off on a second baby for now....with the meds you are on and the physical stresses your body is already enduring it wouldn't be in your best interest to put the added physical changes your body would incur with a pregnancy. The time will come for baby #2 and you will know when that time is best for both you and your baby. For now you just focus on the mommy being healthy.

Thanks for asking about my brother. He continues to do well although he states that he does not feel normal. The meds allow him to function and unfortunately stress seems to worsten things with this type of condition which you girls probably have noticed. And in life it is almost impossible to remove all stress as much as we try to. ;) He still experiences the chest pressure, headaches, and tremors but the meds seem to keep it under control and tolerable. He just told me about how thye check his pacemaker every few weeks over the phone. He places something on his wrist & connects it to the phone and a computer reads the information to determine whether the settings are within range. It's amazing how things are done :D

Well.....I am hoping to hear some good news from you two next time you post. Meanwhile know that you both are in my prayers....Goody :wave:
Oh, Jen....I am so sorry to hear how things are going lately for you. I can only imagine how this is taking it's toll on you. Thank God you have a husband who supports you so well. I feel for you being a mother myself with a disability since before my children were even born and yet it doesn't even impact my life as this condition seems to have on yours. I know that this all must weigh heavily on you in terms of your limitations....please most of all do not allow it to depress you....if you feel this way speak to your doctors..there was a time that I had to go on Wellbutrin, it is a mild antidepressant that alot of women are on for menopausal symptoms and it may help until you get to the bottom of all of this. I think it is a great idea to go to Columbia and get a total workup until the find the treatment that will give you back your life. Keep on seeking out medical expertise until you find out a way to help restore your ability to function on a daily basis.

As for my brother, I spoke to him yesterday and was amazed at how well he sounds. The meds seem to be helping him, he is back to fishing & boating which he loves and he is coming for a visit to celebrate Father's Day and have a mini reunion with most of my family minus my other brother. He arrives late tonite and I am looking so much forward to seeing him since I haven't since he had been hospitalized. I haven't seen him since January when we made a trip to Las Vegas together. And I really miss him. When I was talking to him last night he must have told me he loved me at least 3-4 times.....something that isn't usual for him. I told my husband that it must be the meds.....and perhaps I should give him a few doses. ;) But it was wonderful to hear the life back in him through his voice that I haven't heard in so long. :bouncing: I know that when you have experienced something like what you and my brother have, where your life has been so drastically changed and all of a sudden you can do the things that many of us take for granted again, you can't help but be happy. I am praying that you & all here will be able to experience such happiness soon.

Please continue to keep us posted and know that each & every day that you are in my thoughts & prayers....Goody
Lisa,
I know I haven't been a part of this discussion for a long time but wanted to just say that I am very sorry you are still not feeling well.

Your vision loss is of great concern. Has anyone ever performed an MRI of your PITUITARY (not just your brain) to see if you have a mass pushing on your optic chiasm, the area where your optic nerves cross at the base of your brain? There are certain types of pituitary tumors that can cause your symptoms, including vision issues. This is not a part of being dizzy, Lisa. You have to see an ophthalmoloigst and pronto to be certain you do not end up with permanent damage. Regular docs often don't know much about vision.

I know I have asked this before but you have never answered...Have you had your aldosterone levels checked? And..are you on florinef as well as the other medications?

I know one person with POTS and she has said countless times that with all of the medications she is on, the one thing that helps the most is taking lots of salt with her diet.

I really hope that you can find some relief soon. Please take care of yourself,
Sadie
Sadie -

I am not on florinef...those levels when checked were okay. I did talk with my dr today about the vision stuff...when I went in I had such a pain behind my right eye it was AWFUL. We had to turn out the lights throughout my infusion treatment. My doc came in to check on me and we talked about everything plus the pain I was having. Unfortunately, it was also causing total blurriness out of my right eye, I couldn't focus on ANYTHING. I told him that I know if I went back to the eye dr that my prescription would be completely different my vision has changed so much. He asked when the last time I was to the eye dr was, I told him April, which is when I just got new glasses. He said my vision should not change like that that fast and that if it were headache related it would be gone when the headache was gone, but it is not. He told me that he is VERY concerned about it. He is calling the opthomologist tomorrow to get me in this week if possible. I told him too that I felt as if I was going to totally lose my vision this past weekend. He didn;t like the sound of that either. So, I am seeing him again on Friday. We are playing with some of my other meds to try to settle the dizzys. We are cutting back on the Nadolol and if that helps a little, then he is going to place me on some meds along the line of Ritalin. It should be an interesting week. I am a little concerned about this vision stuff though, I know something isn't right. I just really couldn't handle any bad news right now.

So please keep your fingers crossed...I'll update when I can.

Goody - I am so glad your brother sounds like he is doing well!

~Lisa
Jen & Lisa ~ It's been rather quiet here, just thought I would check in and also give you a little update.

Jen ~ I hope that the meds they started yo on for MS are continuing to give you some relief. Please give us an update so we know how you are doing.

Lisa ~ You sounded quite miserable last time you posted. How is your BP doing without the evening Naldalol??? I was hoping that somehow you would adjust and it would improve things.

Well Goody has an update as well....my brother's chest pain has returned and his doctor thinks that he may be rejecting the pacemaker and starting with an infection again. He is back on the prednisone and will see the surgeon sometime this week/early next week. I just found out that his diagnosis is Autonomic Failure and very rare. He was beating around the bush when I asked him exactly what his diagnosis was and it doesn't sound good. Apparently it will be a case of juggling around meds in order to allow his blood pressure & pulse to function somewhat normally. It's difficult to even understand how this happened....but it only gets worse with stress and my brother's life is full of it. He's on a third marriage, has 6 kids, 2 ex wives and lives his life with visitation schedules I couldn't even manage. His newest wife is wonderful in terms of being supportive but it's almost as if his body is reacting to the craziness in his life. My 16 year old daughter is staying the summer with him as a mother's helper which I hope is taking some of the stress off of him. From my sister in laws reports she is of great help to them and manages the kids well allowing my brother and SIL some time to relax and go out on their own to recuperate from daily activities. I do find some comfort in knowing that my daughter is in a way reducing some of the stress.
I guess I will know more next week about what comes next.

I hope to hear some updates from everyone else as well. Please know that you are in my thoughts & prayers ~ Goody :wave:





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