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

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    Old 04-07-2005, 06:17 AM   #16
    goody2shuz
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Quote:
    Originally Posted by mngirl

    I should be an interesting next few weeks. Hopefully I will find some relief and get some more answers about all this. I still feel awully lost and that none of the docs really know what to do about it all. My Mayo doc says that he is more worried about me mentally than physically, imagine that? I do feel like I am going to crazy at some point, since getting no real answers is not the greatest feeling.

    Well, i hope your brother starts to feel better. As afraid as I would be to have that done, I wish someone would at least maybe say that is an option versus having to live with all this crap. I can only take this for so long. Do is he on any of the meds he was on before the pacemaker? Are they thinking he will get rid of all the meds? Did they say what his chances of being back to normal are with that in? You will have to keep me updated on how his symptoms are doing.

    I hope life gets better for him. This crap really sucks. It is also taking a toll on my family, as I am sure it has on yours. My 6 and 2 year olds can't really deal with this anymore.

    Keep in touch. I will let you know if my ortho has anything interesting to say, or if I hear back from Mayo about my test results.

    Have a great night - tell your brother to stay strong!

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

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

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

    You and your family are in my prayers. I will continue to check in here and offer you support and let you know of my brother's progress. I hope to hear some good news from you soon.....Goody

    Last edited by goody2shuz; 04-07-2005 at 06:21 AM.

     
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    Old 04-07-2005, 06:47 AM   #17
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Quote:
    Originally Posted by goody2shuz
    I guess my family is use to these sort of things......somehow God has equipped us with extra serenity powers needed to have the courage to accept the things we just can't change and to make the best of it.
    You certainly have loads of serenity, my friend. If having serenity comes the problems that you accept so easily, I should count my blessings that I have poorly-developed serenity.

    With the pacemaker in and his condition stabilizing, does your brother think he won't have to go to the specialist in Maryland?

     
    Old 04-07-2005, 07:14 AM   #18
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Quote:
    Originally Posted by heartlandguy
    You certainly have loads of serenity, my friend. If having serenity comes the problems that you accept so easily, I should count my blessings that I have poorly-developed serenity.

    With the pacemaker in and his condition stabilizing, does your brother think he won't have to go to the specialist in Maryland?
    Good morning, Heartland You are such a dear friend to offer me your support & praise each step of the way. Thanks for that

    It looks as if the specialist in Maryland was a last resort. Open Brain Surgery usually is. And so, since the meds seem to be doing their job that's the form of treatment. The same with my back...surgery will always be a last resort because even after having it there are no guarantees that anything will be any better and possibly even end up worse than beforehand. So I guess time will tell.

    Yes...there is alot of serenity and the meds I am on make it even feel more apparent Thanks for your friendship.....Goody

    Last edited by goody2shuz; 04-07-2005 at 07:15 AM.

     
    Old 04-09-2005, 11:03 AM   #19
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    An update from Goody.....my brother was discharged home on Thursday when the tests came back okay after having the pacemaker put in but his having severe chest pain postoperatively. He didn't sleep all Thursday night and Friday it only worstened....Vicoden and torinol wouldn't even help. And so my SIL got in touch with the doctor. He was readmitted yesterday with pericarditis (an infection of the lining of the heart ) which is extremely painful and they are treating it with antibiotics and steroids. He is also on benadryl for an allergic reaction he developed to the adhesive tape used for the cardiac monitoring at the hospital. I guess the plan is to keep him a few days & send him home after they control the infection. If it doesn't respond they may have to use a needle to take the fluid buildup around his heart.

    So that's the latest...hope all is well with everybody else.....Goody

     
    Old 04-09-2005, 01:32 PM   #20
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Oh Goody...I was hoping to hear some good news about him...I am also on medication because I too have an inflammation with the lining of my heart, due to the severe tachycardia I have been having. They put me in Bextra to help. I will say that it has a little bit, but then again I haven't been up walking very far. When I go about 1/2 a block, then the MAJOR chest pain starts. According to my doc, that should get better as I start to get back to some normal stage.

    I called to start physical therapy yesterday at my old place and she asked me "What are the chances of you passing out on us?" I told her that I didn't know. She said that they discussed it and they would rather that I do my physical therapy at the hospital in case something happens, they can do something about it right there. So, Monday I start PT there. It should be interesting.

    I have also started taking Cymbalta for the pain that I am having for my head/shoulder and elbow and I am not sure if my reaction is to the new drug or the POTS and Addison's. I had MAJOR dizziness, nausea, itchy skin, like a sinking chest feeling, MAJOR tremor (so bad I couldn't sleep) and I sweated so bad I soaked my clothes and the bed. I am still really sweating even now.

    I went to my arm doc on Thursday too and guess where they are sending me (I am now a year out from my surgery)...To a pshycologist. I have 6 hour and a half abppointments. She is hoping that he can help with stress management, pain management and relaxation techniques. I told her all that was also happening outside my arm and she definitley thinks this is a good idea. She told me that she is surprised that I am not in a deep depression at this point, because many of her patients in the situation are. I have been trying tot stay positive so I don't go loony, but I am sure that it only last so long. They said if this doesn't help that they will refer me to a pain management clinic to try some alternative types of pain management (whether that be some type of pain implant, etc.)

    Anway...I hope your brother starts to feel better. Keep me posted...

    ~Lisa

     
    Old 04-10-2005, 10:48 AM   #21
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    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

    Last edited by goody2shuz; 04-10-2005 at 11:08 AM.

     
    Old 04-10-2005, 01:19 PM   #22
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Quote:
    Originally Posted by goody2shuz
    my biggest worry is him catching one of those superbugs that they can't treat that lurks these hospitals.
    What do you mean by "these hospitals", Goody?

     
    Old 04-10-2005, 02:18 PM   #23
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Quote:
    Originally Posted by heartlandguy
    What do you mean by "these hospitals", Goody?
    Heartland ~ I didn't mean to infer any particular hospital but hospitals in general. It has been found to be of great concern, that as well as they clean a hospital, there are virulent strains of bacteria that form that have formed a resisitence to most broad spectrum antibiotic treatments. In other words....the faster you can get yourself out of a hospitilization the better off you will be. When I went in for my colon surgery, Tom was given specific instructions on exactly what he needed to do in order to get me out of there ASAP. My fear was staying there any longer than I absolutely had to in fear that I would catch one of these superbugs they're talking about. Bacteria are creating new strains of themselves that are highly resistent to conventional treatments......quite scarey, huh????

    Anyway....this is my fear for my brother and I was very open with my sister in law on exactly what she needed to do with him in order to get him out of there.....Goody

    Last edited by goody2shuz; 04-10-2005 at 02:26 PM.

     
    Old 04-11-2005, 10:48 AM   #24
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Well...he's getting out this afternoon...with two collapsed lobes and an infection of his heart he's going home And on morphine which further surpresses your respiratory system. He' a 42 year old man and 6'5" so there's nothing this big sis can do to hold him down. It's a catch 22...if he stays he can catch a pneumonia that'll probably kill him and if he goes home I guess I'm afraid he won't have the proper monitoring...I read him the riot and told him that he had to amubulate every hour and walk at least a block, cough & deep breathe every 15 minutes whether he wanted to or not and to get back to the hospital if his pain increased in anyway (indicating more fluid on the heart). The echo and Chest xrays this morning showed no significant changes....would feel better if they showed some improvement, but no. My mother is beside herself. I'm praying that he has some type of improvement before I leave for my trip....I need to go with some peace of mind. I hate being so far away...I could be his private duty nurse but know that I have my own limitations right now so I guess I did the best I could by telling my SIL and the patient himself what has to be done. His daughter & son make their first communions on Saturday. I know I need not ask...but prayers would be appreciated.....Goody

    Last edited by goody2shuz; 04-11-2005 at 10:56 AM.

     
    Old 04-11-2005, 11:40 AM   #25
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Sorry to hear this news, Goody. He will continue to be in my prayers.

     
    Old 04-14-2005, 07:21 PM   #26
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    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

     
    Old 04-14-2005, 09:29 PM   #27
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    He will continue to be in my prayers. I've thought a lot about him this week.

     
    Old 04-15-2005, 01:17 PM   #28
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Goody -

    I have been thinking about your brother lately, and I am sorry that he is not doing well at this point. I wish that you would be able to post some good news soon! I know how hard it is to even think about enjoying yourself on a vacation when you know that a loved is suffering. But it won't do you any good either to not get some time away. That doesn't mean you can't call every day just to make sure that things haven't changed.

    He can make it through this...you have to believe that. He is definitely in my thoughts and prayers, no one deserves to feel like that.

    I actually just came home from physical therpay and had MAJOR chest pains just sitting on a reclined stair step machine. My heart rate went from 50 to 72 just by stepping VERY slowly and only for 6 minutes. Then any activity thereafter just caused more pain when trying to left my legs or anything. I have to say that this is something that seems like it is impossible to get through. They told me that I just have to "work through it". I know that your brother can't just "work through it", he definitely has to just try to keep his faith.

    Tell him that we are thinking of him and are expecting great news the next time we hear from you

    Sending you tons of hugs and support!
    Lisa

     
    Old 04-16-2005, 11:19 AM   #29
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Lisa..... Thanks for you thoughts.....I am posting while on vacation.....in beautiful Cancun.....I called my brother from airprort yersterday and he sounded much better....the morphine doubled up was making him more comfortable, thank God. So I am praying that he will have better news in 2 weeks when I return. Thanks again for your prayers & concern......GOODY

     
    Old 04-16-2005, 11:27 AM   #30
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Heartland.....got 2 minutes left but just enough to thank you for your prayers....well its back to the beach for me....its beautiful here and just what this gal needed.....adios mi amigo......Goody

     
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