Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
BillBRNC

Orthostatic Hypotension

Recommended Posts

Dr. Okun, I have significant autonomic defficiencies due to Dementia with Lewy Bodies. One of the most significant problems is orthostatic hypotension. I read that OH is also a problem with regular Parkinson's Disease mostly due to autonomic defficiencies. I also had very servere heart failure about 8 years ago, and my various cardiologists say that the medications that reduce orthostatic hypotension would be bad to possibly fatal for me. Now forget for moment that heart failure might be a better way to go than DLB, but I wonder if you know of any medications that reduce OH that are OK for people with a history of really bad heart failure. My current EF is around 35, but it has been stable at that level for maybe 4 years or more. At its worse, my EF was 10 while I was on heart transplant protocol.  Obviously I didn't have a transplant, becuase my EF started going up just when the wanted me to start primacor or something like that to keep me going while awaiting transsplant. But before I started that medication, I told them I thought I might be improving, so a new echo showed my EF had in fact gone up to a little less than 20 since my last one. I don't know how they claim to be able to measure it that close, but the real  point was that I had clearly improved. Aanyway, with that background, what can I do to minimize OH. I have already reduced my heart meds to as low as the cardilogist can accept, and that worked some for a few months, but my OH started getting worse again about a two months ago. Any suggestions? Thanks. Bill.

Share this post


Link to post
Share on other sites

This is  a tricky situation.  I usually don't do anything unless I am in constant contact with the cardiologist.  Reducing or eliminating agonists, amantadine, and MAO-B's and going to a low dose and frequently administered Sinemet regimen can be helpful.  6-8 glasses of plain water a day, compression stockings and salt can all help. Using Florinef, Midodrine, or Northera would be a negotiation with the cardiologist.  Hope that helps.

Share this post


Link to post
Share on other sites

Dr. Okun, thanks for your comments. I have appointment with my cardiologist on Monday. My wife has filled him in on what going on, and cardio want to do echo the same monring before my appointment. Lucky for me the cardio I have at my old home is a really good one, and he reads and stays very current and had many PD and LBD patients over the years for their heart issues. I will send my wife your answer for her to do with as she sees fit. I will also take it when I got on Monday. By the  way, why would a person me wear compression stockings if I don't have any fluid buildup in my legs ankles or feet. Even at my worst of heart failure, I didn't have any fluid build up and I didn't wear compression stockings. Just wondering. Thanks again for your help, as in it really helps. Bill.

Share this post


Link to post
Share on other sites

With or without edema in the legs compression stockings help venous return and are very helpful for orthostatic hypotension.

Share this post


Link to post
Share on other sites

Dr. Okun, I saw my cardiologist earlier today. After reviewing the data from my pacemaker/ICD aand the results of my echo, he then went into the issue of the heart medication, orthostatic hypotension, and what adjustments or additions he could support. First he said that I should not take Namenda, period. He thinks that drug independently can cause OH, plus bring back old heart failure or bring on new heart failure. He also said the several drugs available to treat OH, but I can't recall the names, are not good for people with heart failure. He then suggested further reducing some of my heart med dosing. And he also said that in my situation he would not use the OH drugs until he had basically eliminated most if not all of my heart meds. He simply believes that in my situation taking the OH medications would do more harm than good, such that he would come close to eliminating the heard meds before trying the OH meds. How fast we go though his game plan is depednet on how I do as he reduces one med, then another, then end a med, then end another and so on through the heart meds, or something like what I just said. He also will look close at my pacemaker readouts to see if fluid start to build up, which would mean that whichever heart drug he had just reduced or eliminated in fact resulted in increase in fluid level I guess in my heart or whatever. I probably have messed this up too much in the typing and recall of what he said, but my wife got it all nailed down solid as she is doctor too, but retired now. Anyway, I just wanted to pass this along. Oh, he also again asked me how much I need the dosage of Sinemet I am taking now, which has already been reduced some, and I told he that further reduction simply would not be possible in terms of quality of life, so the Sinemet is off the table. I said if none of his other attempts with med reduction work, then I might consider doing away with the Exelon, but that would be judged by what my cognitive/behavioral/autonomic is up to at that time. Personlly I think the Exelon is here to stay same as Sinemet. I won't increase it like the neurologist has suggested, nor will I go for the Namenda as he also suggested. By way, I have always questioned the use of Alzheimer medications for Lewy Body or Alzheimers or anything else in the same zone, since the data is somewhat squishy to say the least while the marketing department and funding done by the drug companies have been in overdrive.  But see, even with how I personally feel, I still have been taking Excelon at a good dosage throughout the process, and I  will stay on it until there is nothing left for it to help. Thanks for your help, because you made it clear that the cardiologist needs to be at least listened to closely considered when it comes to the heart meds and OH due to Lewy. Bill.

Share this post


Link to post
Share on other sites

I am glad you are getting a great communication stream going.  The next step would be to get your cardiologist talking to your neurologist!

Share this post


Link to post
Share on other sites

Dr. Okun, yes that would be really nice. We are working on it and I think success will be the result. I am in transition now from having health care providers in one town while I now live two hours away in CCRC, so I am moving health care to new city and to CCRC. But certain issues are in full speed ahead and can't wait until we get everything perfect. I think I might keep cardio in the place where my wife still considers her home base, even though she not there all the time, and in part due to her having been doctor there so things tend to move smoothly for us there in terms of health care. I moving LBD and general care to new city, but still keeping neuro in former town because of same reason. The problem is it is just hard for me to get there in terms of not going crazy over each trip there and back. The LBD is hard to live with, as is Parkinson. It a bit of mess right now, and we keep thinking about moving everything to where I am, but we have a lot of good history in place and good realationships. But we are working on everything. But yes you are totally right about getting communication going without us being part of the direct channel. Thank Again. Bill.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×