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    Autonomic Nervous System Dysfunction

    Anybody else have this? I was told I have it this week after being hospitalized last week after passing out, falling, and cutting by head pretty bad (6 stitches). My blood pressure when I got to the hospital was 74/40. I drove there. I had no idea it was that low. I felt OK. A little dizzy maybe, but I attributed that to the big gash in my head and the fact that I had just hit my head 3 times in 3 places.

    I was hospitalized 3 days. Long story short. I had been passing out for the prior 4 months, 5 times. The cardiologist told me I had autonomic dysfunction due to my MS. He said due to the proximity of my brainstem lesions, my blood pressure mechanism and heart rate mechanism were no longer working the way they should. When I get up from lying down, my blood pressure drops significantly, and so does my heart rate. Unlike in postural hypotention.

    So I have to take pills that keep my water intake inside my body (kind of like reverse diuretics), eat more salt, and exercise my lower body more to provide my body with more availability of blood in the upper portion of the cavity. I have an ultrasound of my heart on Tuesday.

    Just wondered if anyone else out there had this too. The cardiologist said he had lots of MS patients with this same thing.

    Thanks
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    #2
    Dear Lisa~ you've been run through the mill, haven't you? I'm so sorry, but glad the doctors know what is happening and have given you tips for managing this.

    I hope the medication helps balance things out for you and you improve with exercise and salt intake. Keep us posted on how things are going~

    You are in my thoughts
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      First of all, I am so sorry you have been going through all this.. yikes!!

      Yes, I do. After I lost my initial DX of MS, in 2008, I ended up seeing a new set of doctors due to job/insurance change. Thank God, as I had a very astute Primary doc send me to a neurologist who specializes in Dysautonomia. He had the only lab to test for such disorders in the Midwest. So I have Dysautonomia and take a beta blocker. Unlike you, and most, my HR/BP jumps up suddenly, out of control THEN drops leaving me in another set of symptoms. I present much like a TIA or stroke.

      I also suspect it is connected to MS. I have a new MS doc now, so I will bring that up to her. I do not have a brainstem lesions, although they thought they saw one awhile ago.

      Cardiologists can conduct a Tilt Table test, to confirm this diagnosis, but honestly it also involves other symptoms, like sweating issues (lack of) and other testing to confirm this diagnosis of Dysautonomia.

      Keep me informed as to what they are doing. I would seek out someone who specializes in Autonomic disorders, just to have a 2nd opinion and possible treatment.

      So what happened to you, is more typical than the symptoms I go through with my Dysautonomia. It can be very dibilitating without MS. There is a web site and forum for this. DINET.org

      Feel better. And let me know what happens okay?

      Warmly, Jan
      I believe in miracles~!
      2004 Benign MS 2008 NOT MS
      Finally DX: RR MS 02.24.10

      Comment


        #4
        Thanks Jan, they did do a tilt table test. The cardiologist I see has several other MS patients with this disorder, I feel pretty comfortable with him. I will check out the website you put up. Thanks!

        Lisa
        Moderation Team
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Hey Lisa,

          Sorry to hear about the fall. I've been on a roller coaster with my autonomic functions for the last couple of years.

          Docs say it has to do with brainstem lesion.

          My symptoms are a little different...bp spikes really high, 210/100, even in the night. Heart on the other hand races and I've been diagnosed with SVT...when that happens, then my bp gets really wonky, high systolic over very low diastolic.

          I have pills I take when things start getting weird. Pills to bring down the BP, pills to try to stop the SVT, and when those measures don't work (I'm supposed to wait awhile to see if the pills take effect) then I go to the ER and they intervene with IV meds.

          Just had a sleep study and my respiration is not behaving, so they're going to try a machine tomorrow night at the sleep lab to see if it helps with that.

          Had all the cardiologist tests, and they say it's the MS,not my heart, which is good news (bad news is,if it was a heart issue they could do an ablation, but the cardiologist says that won't work for this.) The BP they termed dysreflexia, but I think somewhere along the line, it went back to straight autonomic dysfunction diagnosis.

          Luckily, I can feel when an episode is beginning, whether it be the bp or the heart rate...so I pop the appropriate meds and lie down and wait. I've only had 2 ER visits in the past 6 months, so that's not bad, IMO.

          From what I've read, when you have autonomic dysfunction it can manifest in many different combinations of symptoms with bp, heart rate,and breathing. Hope they come up with a strategy that works for you.

          So we roll with the punches...hang in there.

          Comment


            #6
            Interesting, RDMC, your description/experience is close to mine. BUT sometimes as the BP/HR climb, I start to slurr my speech, then cannot talk, then eventually look like I am unresponsive.. and paralyze!! It seems to be a combo of the Dysautonomia and my rare kidney disease ( I spill electrolytes) I sometimes can get hypokalemia.

            Also, my breathing is very very shallow. My new MS doc wants me to go back to my sleep study doc to be re-evaluated.

            Don't know how MS enters into this..but I do have a lot of brain atrophy for my age, and mostly cognitive symptoms.

            So it IS all in my head!! LOL

            an
            I believe in miracles~!
            2004 Benign MS 2008 NOT MS
            Finally DX: RR MS 02.24.10

            Comment


              #7
              What's interesting Jan and Lisa is how all three of us seem to be affected in one way or the other by electrolytes.

              Lisa, you said you had to take salt to keep BP from dropping, Jan you have hypokalemia, and ever since I've had MS, my salt and chloride are low every time they test do bloodwork.

              So they tell me to eat more salt, even though I have BP spikes. In the hospital, when I've been there for a few days for one thing or another, the nurses keep coming in with chips, and salty snacks telling me to eat more salt...chips, now that's a healthy choice But they do hang a bag of sodium too.

              I've often wondered about the link between the electrolyte imbalance and the MS. During an exacerbation my salt dips lower, so I'm pretty sure it's somehow connected with the MS.

              Just another "coincidink" that we'll probably never have an answer for.

              Comment


                #8
                Prayers for all three of you

                22cyclist, mjan and rdmc,

                I am praying for all three of you for treatment and relief.

                I am surprised of how MS has a hold on our bodies in so many different ways.

                What people have to go through just to get through a normal day.

                I just wanted you all to know that you are thought of and prayers are sent out to you all for strength and courage with this disease.

                God Bless you and may he keep you in the palm of his hands.
                STR

                Comment


                  #9
                  One of my cardiologists now believes I have this, too. At one time, I was dx'd with bradycardia and have had 3 pacemakers.

                  After I had to have my last one removed due to an infection, I underwent an electrophysiology study and the cardiologist couldn't provoke an arrhythmia, therefore determining I didn't need one. Here I'd just had my unit completely removed a few months prior so I could get the MRI compatible one.

                  I had a total of 7 pacemaker surgeries (3 extractions) in 8 1/2 years, and now it may all be due to this. My poor chest has multiple scars! I had a couple of bad flares after 2 of the surgeries that have never completely resolved.

                  My MS Specialist has yet to agree with the cardiologist who suspects I have this. I just don't think he wants any assumptions based on my MS dx.

                  Interesting to hear about the electrolyte deficiency. This is something that comes up every time I'm in the hospital. Never thought it may have something to do with the MS.
                  Kimba

                  “When you change the way you look at things, the things you look at change.” ― Max Planck

                  Comment


                    #10
                    22Cyclist

                    I had that going on about 3 years ago. I was told it was not related to MS. Kept passing out...thankfully the first was actually in a doctors office. It was a dermatologist, but hey...a doc none the less. A nurse caught me before I hit the floor. Was not so lucky the next two times.

                    I had a cardio work up too...with echo. Result...low blood pressure. My normal BP is about 100/50. Which was resulting in hypotension stuff. I too was told to increase my salt intake and slowly get up from a sitting position.

                    I do not have a brain stem lesion, so that is a major difference.

                    Valium and salt! How lucky can two gals be?
                    Katie
                    "Yep, I have MS, and it does have Me!"
                    "My MS is a Journey for One."
                    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                    Comment


                      #11
                      Well, I started my new medication, so we will see if that helps. True that Katie, can't get much luckier! The more salt you eat the more you drink so its a cycle.

                      Hopefully the three will be the answer.

                      Take care guys. Glad to know I am in good company.

                      Lisa
                      Moderation Team
                      Disabled RN with MS for 14 years
                      SPMS EDSS 7.5 Wheelchair (but a racing one)
                      Tysabri

                      Comment


                        #12
                        Just wanted to add I also have autonomic dysfunction and the drs believe it is attributed to the ms. I am more like Jan in that I have to take bp meds and my heartrate was very fast. I was put on two meds to slow it down along with the other bp meds. After seeing an electrophysiologist I was told to drink 150 oz of fluid daily and to eat salt. Seems odd to tell somebody with high bp to eat salt but if I don't I will end up passing out. I am unable to be on my feet long at all so have problems in that area. Its not fun to have and hard to explain to others I am finding. Hope your meds help you.
                        We are all quite a bunch here. Although I wouldn't wish it on any of your I am glad to know others experience this as makes me feel more like the drs are right on with their diagnosis.

                        Comment


                          #13
                          Originally posted by Strhuntrss View Post
                          22cyclist, mjan and rdmc,

                          I am praying for all three of you for treatment and relief.

                          I am surprised of how MS has a hold on our bodies in so many different ways.

                          What people have to go through just to get through a normal day.

                          I just wanted you all to know that you are thought of and prayers are sent out to you all for strength and courage with this disease.

                          God Bless you and may he keep you in the palm of his hands.
                          From me to you, thanks for those thoughtful words and concern. I am doing fine with all of this of late.

                          I still have frequent "paralyzing" whenever I am trying to wake up. That is I can hear, but not move. I actually feel fine, unles I have to scratch my nose! LOL Getting the electrolytes balanced is the key.
                          But its not bad as I no longer work.

                          Best to you and yours, Jan

                          I believe in miracles~!
                          2004 Benign MS 2008 NOT MS
                          Finally DX: RR MS 02.24.10

                          Comment


                            #14
                            Yes, from a suspected teeny-tiny brain-stem lesion (which was also thought to be the cause of my bout of bilateral TM - what fun!)

                            I had resting tachycardia/HR of 120-130...but would fluctuate up to 180-190 resting which was exhausting. I also had 3 episodes of syncope and vertigo. I would get bouts of high, low, borderline-malignant BP, then normal. I also used to sweat A LOT, I mean like "bailing hay in August/98F" sweating...ewh, I don't miss that at all.

                            I've had tons of cardiac tests, my ticker is 100% OK.

                            I take a low-dose beta-blocker (Inderal) and I feel much better. I've been taking it for 3 years and haven't had another major episode. For whatever reason, I think the teeny-tiny lesion healed up enough to resolve some of the issues...I hope it never gets re-activated *Fingers Crossed*
                            RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

                            Comment


                              #15
                              Originally posted by Strhuntrss View Post
                              22cyclist, mjan and rdmc,

                              I am praying for all three of you for treatment and relief.

                              I am surprised of how MS has a hold on our bodies in so many different ways.

                              What people have to go through just to get through a normal day.

                              I just wanted you all to know that you are thought of and prayers are sent out to you all for strength and courage with this disease.

                              God Bless you and may he keep you in the palm of his hands.
                              STR,

                              Thank you so much for your lovely post. You are so kind, and I assure you all prayers are gratefully accepted.

                              Comment

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