Has anyone else heard or know of a connection between PSP & NMH (a type of fainting), with a possible solution being a pacemaker?

NMH is Neurally Mediated Hypotension. I had done a lot of research about it to prepare for my next Neuro appt. (tomorrow) and can't find it anywhere. What prompted me to do the research is the near-faint event while driving to the hospital for my swallow test, which prompted the end of my driving days.

I've been a chronic fainter since age 3 to the present. The 1st time at age 3, my Mom had me in a highchair to take a sliver out of my finger. I watched her hold a needle to the end of a match and told her "My eyes are getting small.". (Yes, I'm mostly blessed but sometimes bothered by an accute memory going back to when I was in a crib.)

I fainted often and everywhere. Anytime I had to have a shot. If I saw blood. If I was startled suddenly. If I stood too long in a line. Especially during Mass; had to kneel for so long, then would stand to go to communion, and pass out in a blink.

I've hurt myself numerous times due to the falls I've taken over the decades, including several serious knocks on my head. It has interferred with my life greatly; after an episode, even if I don't lose consciousness, I feel very ill the rest of the day.

I've asked almost every doctor I've seen over the years about it, because it was that big of a problem for me. It was always dismissed with a "don't worry about it; you won't die from fainting, but you might get hurt from the fall". Very frustrating.

When I was 40 during 1998, I had to jump out of bed suddenly because one of my girl's was sick. I passed out cold in the hallway. I thought enough is enough. I need to know what this is.

I saw a cardiologist who had me undergo a 'tilt table test'. I had to lie on a flat table, with the lights low, for 30 minutes. I was strapped onto it from head to toe. At 30 minutes, they raised the table to a 60 degree angle. I felt like a dope. Told myself it was another wild goose chase. Then the fainting sensation hit and out I went.

The Doc told me I was out in under 2 minutes, the 2nd fastest time they ever tested. This was significant because it meant I had little warning of what was about to happen & take precautionary actions. My heart also stopped for 6 seconds. They didn't have to shock me, but had to give me an injection of something to restart my heart. I had to stay in the hospital because my pulse and BP did not bounce back like it should; both my BP & pulse stay very low, which explains why I feel so sick afterwards.

He put me on both a beta blocker & anti depressant to manage it. It left me so medically intoxicated I called them and told them I couldn't tolerate the meds, I knew what my triggers were and would manage it myself. Which worked basically fine for a good while. If I got the sensation of fainting, I'd lay down anywhere I was including parking lots, the floor of stores, etc.

However, about 3 years ago these fainting events no longer followed my usual triggers. They've come on faster and more randomly. I saw a cardiologist at that time because it concerned me greatly. I asked for a repeat of a tilt table. She gave me a list of postural excercises to do, which didn't help.

I easily have 3 or 4 of these events a week; sometimes more. One event even occurred during my sleep; I was dreaming & was startled by something in the dream & woke-up fainting lying in bed. Kept telling myself to call 911 but didn't; didn't want to scare the kids, etc. After 30 minutes of laying there, I started feeling a little better but got hit by a second round.

So there you go. With it comes the added bonus of low blood pressure. I'm 54 and my runs around 90/60, or lower, or if really worked up at a doctor's office, 125/70-something. I always tell them "this is the big one coming"; they ignore me:) My pulse hobbles along between 60-70. I know many people my age or younger would like to have these numbers. But it's icky. I've always felt like I've had to work 3 times harder at anything because my wiring doesn't allow for the needed boost.

So after that event of almost passing out behind the wheel in which I maybe had 30 seconds from the onset, scared out of my witts, deciding (with lots of encouragment) not to drive anymore, I started digging.

I know I found somewhere on the blessed internet, a connection between PSP & NMH which is now being treated with a pacemaker if medication doesn't help. Really don't want to do the beta-blocker thing again; I felt trapped in my own body; I don't need that.

If anyone knows anything about this connection, or sounds familiar to anyone, I sure would appreciate your input. I certainly will talk to my Neurologist about this tomorrow. The NMH has been a burden all of my life. I'm not saying I've had PSP all of my life. But it was interesting to find the info out there.

Thanks in advance for your patience and any feedback you might have.

17 Replies

  • Just occurred to me I need to explain what NMH is if I'm to seek advice. It's an acronym for Nerually Mediated Hypotension.

    Simply put, there is a disconnection from the brain to the heart, activated by the vagus nerve.

    When working properly, this nerve in the brain tells your heart when to pump out blood harder if it is too full, or other areas are deficient.

    When it doesn't work properly, it sends the message to your heart to start pumping blood out hard & fast, when the chambers are basically empty. Meaning, most of your blood supply is belly or below due to long periods of standing, etc.

    That's the simple version. Sorry I didn't include it with my question.

  • Think I may have found what I was looking for. One of the Parkinson Plus disorders is MSA, multiple system atrophy; direct references to NMH & MSA. Will ask my Doc about this. Possible to have more than one Parkinson's Plus disorders, even a little? Not that I want MSA; it's not good; but sure would explain my NMH. And pacemakers are being used to create stability with BP & pulse. Probably would take hurdles to get one, and I'm over-simplyfying all of this, but if a procedure as simples as a pacemaker would reduce or prevent these chronic fainting events, it would be a big blessing and a life's burden lessened. Again, probably oversimplyfing, but a girl has to have hope, right?

  • Okay, I finally found what I was looking for...a link from Mayo for MSA (formerly known as Shy-Drager).

    mayoclinic.com/health/shy-d... - looks like the link won't work; put it there if anyone was interested.

    It's under the 'treatment and drugs' portion regarding a pacemaker.

    Thanks for everyone's help and input on the question I answered myself - LOL. I say this with humor & great affection. Gosh, I guess I still am capable of many things:)

  • judy you certainly are CAPABLE OF MANY THINGS just hope you can sort yourself out soon mate please dont leave your body to science will you it might take them to long to discover whats wrong i say this with humour i have a funny sense of humour no offence intended \\ive got my eye on you just remember that see you peter jones queensland australia psp sufferer

  • Thanks, my Mr. Jones. Oh yea, I'd keep a research project or 2 or 3 going for a very long time:)

    I've had it said to me and I've said it often; it's amazing I've survived all of this and am still here, worse for wear, for sure.

    It just validates to me everything is purposeful, even if unpleasant, and I'm still here because I have things to do.

    As always, thanks for putting a smile on my face:)

  • judy i think our lives are mapped out for us \\ i have great things to do myself yet im just not sure of what they are \ take care look after yourself peter jones queensland australia

  • Ditto.

  • Hi Judy,

    Can I butt in on the conversation? ;-)

    I believe I read somewhere that whilst they are not completely sure what triggers PSP there may be a link to receiving a blow to the head. If this is the case, perhaps the falls and head injuries caused by the NMH were the cause of you getting PSP. Pure speculation but....?


  • Yes, you may butt into my conversation with myself:D

    I wasn't aware of a possible link to head injuries and PSP. Very interesting. And it would make sense. Sense is good. I'll ask about that during my appointment with my Neuro tomorrow.

    Very seriously, what I relayed in my post about these fainting events, how young they started, how many, many times I passed out and hit my head, and how chronic it's been & getting worse, is understated.

    My MRI & Petscan of my brain last summer showed no skull fractures. They did show atrophy, a problem with metabollism in the basil ganglia area of my brain (movement) and apparently several areas of dead tissue due to old blood clots. Perhaps those old clots/dead tissue are a direct result of passing out and hitting my head.

    As a child, my fainting happened a lot. Very often, but I was only taken to the doc once when I passed out at the lunch table in 1st grade & fell backwards on the cement floor, head first; 'cracked my head open'; needed stitches that time. But there was never more testing done about it; don't even know if it was available; maybe, but my parents were told to just get used to it and that was that.

    Can't tell you how many times I'd leave a place such as a restaurant, on the job, in stores, etc. that I left by ambulance because I'd pass out. Almost always the emphasis was on external injuries from my fall; not what was going on in my noggin.

    As an aside, and in the spirit of humor...when I was at the county courthouse to apply for my marriage license in a relationship that was already dysfunctional and toxic, I stood in line for some time, waiting my turn. A voice - MY OWN - kept telling me "Don't do this." "If you think it's bad now, just wait til I'm married." My voice got louder and kept shouting at me with every person who left the counter, I advanced.

    Got all the paperwork done, and passed out in a blink. Woke up on a stretcher on the way to the E.R., clutching my approved marriage license. Nothing done in the E.R. but to tell me I was under too much stress. No kidding. Uh, I did marry him in 1990 in spite of my intution and common sense begging me not to standing in line that day. And, it didn't go so well. Divorced in '02.

    I really appreciate your feedback and your sense of humor. Butt in anytime; lol.


  • hmfsli hi there its fiunny well not funny really but my speech pathologist was talking to me about just anything and i happened to mention that i had been a boxer in my time \\ i started at school then onto the boys club\\ then into the army where i boxed for them just that she said to me i wonder if the blows to your head had anything to do with your psp its a thought is'nt it\\\ thank you for your comment by the way it just jogged my memory peterjones queensland australia psp suffererr

  • Huh. I think we might be onto something...thanks hmfsli for raising this point. And glad it jogged your memory, Peter. Who amongst us can't use that?!

    I've often wondered over the years, especially the last the 3 or 4, when the PSP symptoms started and well before diagnosis, how one person could have so many things wrong with them. Questioned myself many times if I was really neurotic. But the reality of what was/is happening to me would trump it.

    Meaning, my gut has been telling me for a long while now there must be a common denominater.

    I spent all last summer working with my Neuro, going thru all kinds of testing, while he eliminated the simpliest to the more complex and then arrived at PSP; too much objective testing results that confirmed it aside from what I verbaled and my obvious inability to walk well.

    During subsequent visits, I always have a list of questions, and spend the allotted time on those and new symptoms, worsening symptoms, med adjustments etc.

    While he's aware of my NMH, it's only been barely touched on; that's how 'normal' it is to me. So now, I'm really looking forward to my appointment and try to focus on this issue and PSP connection.

    He doesn't know yet about me almost passing out behind the wheel back in March (?). He's always cautioned me not to drive so that problem's been solved. The E.R. doc who saw me that day wrote on my discharge papers that my fainting events are worsening along with my PSP. So, there must be a connection.

    I let you know what I find out, as well as what he thinks about head injuries being the ultimate source of initiating PSP, even if those injuries occurred earlier in life. I just haven't let myself pass out. Period. But because it starts up so frequently, I just get down, and feel sick the rest of the day. In it's own way, it's reduced the quality of my life a lot. It's now gotten to the point I'm afraid to go out anywhere in case it starts up.

    Add in the involuntary falling with the PSP, this last one was a big wake-up call. I could fall and hurt my head badly with PSP. Or I could not get down to level out the blood flow to my heart in with the brief warning period I have, and fall that way too. I just refuse to let myself go all the way out, especially knowing my heart did stop during that tilt table study years ago.

    One must go with the other my gut is telling me. I'm dreaming perhaps, and certainly over-simplfying this, but if a pacemaker were to help in a big way with the NMH, the quality of my life would shoot right up; it's been that much of a bummer.

    Wish me luck.


    Judy J

  • Hello Judy.

    I have often wondered if Mum's first 2 falls contributed to her PSP. Her first occasion was when she had her antihypertensive drug changed, she unfortunately took both kinds of med at the same time and suffered acute hypotension and loss of consciousness which hospitalised her for about 3 days.

    The second was when she sat down suddenly onto the kitchen floor, ?why, and lost consciousness. She was in acute pain for months and repeated visits to the doctors apparently found nothing. however because I worked in the health service I was able to get access to her xray results which showed 2 crushed vertebrae, I often thought that her base of skull and brain must have sustained injury too. She was not not informed of the injury and never fully recovered from the pain issue. Then she was diagnosed with PSP a couple of years later. She was otherwise a very fit and healthy person. Not sure if this is useful to you.

    I hope your visit to neuro was positive and helpful. Take care


  • Brenda:

    Thanks for your reply. I'm sorry to hear all your Mum has gone thru.

    Yes, asking my Neuro about any connection between head injuries/loss of consciousness being a trigger for a PSP disorder is at the top of my list.

    I'll let you know what his opinion is.

    Take good care.

    Judy J

  • Okay. Have some answers; will try to be concise.

    Head Injuries/Loss of Consciousness causing PSP = he said no, no connection he knows of.

    Other causes = sadly he said he doesn't belive the cause/source/trigger will be discovered in his lifetime; he's youngish. He did refer to what we already know; a virus that gets triggered later in life, enivornmental factors, or genetics; he seemed to lean to the side of genetics; it's only my perception.

    Organ Donor Receipents = I asked him this because during a major reconstructive foot surgery in 2005, they had to use an organ donor's bone & tissue unexpectedly and was given a card to get in touch with the family of the donor(I didn't). I swear the onset of several health problems started after that surgery. He did say there are many infectious diseases are contracted by organ recepents; went so far as to include Mad Cow Disease but doesn't know if there's been any PSP connection. My impression from him on this is it wasn't possible, yet...do know how much stuff I've blamed on MY SAD LEFT FOOT?; yup, even named it:)

    Fainting/Any Type & PSP = He said any chronic problem, including fainting, will get worse right along with your PSP; that wasn't encouraging. He did consider for a minute using a tiny dose of what he called "an evil medication because of it's side effects" that raises blood pressure. It's called CORTICOSTEROID FLUDROCORTISONE. He said not only can it be hard to gauge how high even a tiny dose would drive my BP up, possibly to stoke level, has a long list of nasty side effects beginning with extreme emotional instatability. Told him "no thanks", that I would never take a medication preceded by the word 'evil' and I can't afford the side effects, especially emotional instability; hanging on as it is with all of this has been tough.

    NMH (a type of fainting)/MSA (Multiple System Atrophy, a PSP sub-group) = Yes, he did acknowledge the connection BUT told me NOT to get focused on which sub-group I best fit in. Said he would never do that to keep his mind open and that so many of PSP sufferers share the same symptoms anyone, it doesn't much matter. Good to know.

    Pacemaker to Reduce Fainting Spells = Told him I found this on Mayo's site as an option for controlling fainting events with MSA, aside from using a beta blocker or the 'evil' med. He said go for it, and I have my referal to see a cardiologist. He said to let the cardiologist decide what's best to do, but it might be possible. Yea:) I think.

    Sleep Apnea = Don't think I've posted about this before. Several weeks ago, discovered I'd begun sleeping on my back; always have been a side sleeper. My snoring would wake me up and/or I wake up feeling like I was choking, etc. It became an established pattern for me. He said treating sleep apnea in a PSP patient (if I have it) is very important, because over time, again, your brain isn't getting enough oxygen and causes damage. Geesh: how many ways can we damage our brains even in spite of PSP?

    So that's the major stuff. Only his opinions and my interpretations. Hope this is helpful to someone out there.

    Take good care.

    Judy J

  • It's me again . My husband was diagnosed with Atrial Fibrillation after the Parkinson's his pulse is all over the place . He is on a beta blocker and now also takes Warfarin . I could never understand why they haven't suggested a pace maker . His brother also has Parkinson's and has seizures. small ones . I am wondering if the switching off moments could be a sort of seizures .

    Before he was diagnosed he became very anxious at night in bed he would ask me to hold his hand or hold him tightly . During the day I use to think he was having panic attacks . He must have been feeling very frightened not understanding what was happening to him . He isn't a baby at all always a brave man . still is .

  • Judy and Others. I just posted this in response to another topic and before on this blog but I'll pass it along again. Judy, if it were me I'd not be opting for anything that required anathesia being used. A family member who is an anatheseologist said that many times people with dementia diseases like PSP, MSA, CJD, etc. go under anathesia and after never return to their former status/wellfare. For that reason I'm being EXTREMELY careful that my Sharyn doesn't fall and require surgery. Also we certainly aren't going to opt for any non-esential surgery of any kind. This would seem to go along with the "passing out" having an effect/cause/whatever on PSP. Perhaps someone in the medical profession or with knowledge of this could post on this blog to verify my family members statement. Ask your neruologist about this.


  • Huh. This is very interesting and glad you posted this.

    My PSP symptoms started with vision problems the summer of 2010. From fall of 2010 forward, I've my hip replaced, gallbladder removed unextpecedly, and cataract surgeries on both eyes.

    Had light sedation for the eyes, general for the gallbladder, and a & spinal w/sedation for the hip replacement.

    The change I noticed with various levels of sedations is it triggers a several days worth of insomnia. I cannot sleep; it wires me up; I'm not metabolizing it right.

    I was supposed to get my other hip replaced last year and my right knee replaced this year (born with malaligned hips/knees) but I scratched those off my list of things to do. Recovering from even the sedation has become a challenge for me.

    But, I'll see the cardiologist anyway about my fainting; can't hurt; might help, but will bring this issue up with both Doctors before I make a decision.

    Leaves in kind of a pickle though. Just recovering from a faint event a few hours ago. It really is a troubling/disabling thing on it's own.

    Judy J

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