DRIVING: Raising the while flag, Part 2.

[JudyJ]

I will do my best to keep this concise. I spent hours researching a few things last night and discovered a surprise that may help me, but might be an uphill battle. I will advocate for it like crazy. Even if I do lose my license going forward to increased visual problems, I can accept that; I know it's part of the disease process. But even if I do lose my license, believe I stumbled upon something that might help the quality of my life a lot, and arising out of me almost passing out behind the wheel yesterday.

ER Doc said no more driving ever. Early into my diagnosis, my Neuro brought it up as something to prepare for in the foreseeable future, losing my license. He went on to to explain that in this country, each state has its own laws about this. In MN, it's a "self-reporting" state; any fainting, loss of conciousness for some reason, having a seizure, etc., is all up to the individual to report themselves to the DMV; other states have laws that allow medical care providers to report their patient should they feel they are unsafe to drive.

What I didn't ask him but wished I had, is if MN, a medical professional can by-pass the law and report their patient anyway because of safety issues. I'm seeing my Internist 4-1 who is thorough, compassionate, but no nonsense. At all. The E.R. report from St. John's will be sent to her by the time of the appointment...

...I'm digressing. Here's the whopper of info I stumbled over last night via several sights. I haven't looked into it in years, and I have decades of hearing from docs 'there's nothing we can do about this', etc.

At the age of 3 years old, I had my 1st fainting episode. I was in my high chair & Mom was holding a needle over a match to sterilize it, to try to get a sliver out. I kept telling her 'my eyes are getting small'. I fainted totally out. That's how it began.

I have passed out cold, or as close as you could without going all the way (lowest recorded BP while up & standing, was 54/33; that's bad). I received many injuries, stitches, etc., from my falls from fainting, or close calls.

But it only accelerated; followed a hand-full of triggers, tho. If I stood in line too long, out'd I'd go. If I saw blood on myself or others, bye-bye. I used to be terrified of getting shots; my kids docs finally learned to lay me down 1st, give me the shot, then bring me around with smellin smallz. I never made it to Communion as a Catholic, because especially in the day of Latin Masses and churches with no AC, I'd kneel for a long period of time, then stand for a less long period of time, but usually didn't make it out of the pew. The fainting process would begin, & I'd faint in the pew, or faint if I actually made it in line and progressed a few spots, but was usually carried out of the pew unconcious to outside air. As a young girl who wanted to be a nun, I was devastated, because I could never receive communion. Doomed, I thought, for sure.

As a young to mid-adult, it persisted. If I didn't allow myself to gently wake-up (as they due in Eastern cultures), but when the alarm clock rang, would shut it off, & head to the shower. Within a few minutes, I was back lying on my bed because I'd triggered the fainting process & usually miss work that day. Sometimes it happened after a meal in a restaurant, & I'd feel the process begin, excuse myself to the ladies room, wake up on the bathroom floor with people trying to help me. In fact, pre-kids and at home with my now X, I started to faint. Well intentioned, he held me up from under my arm pits to stop from falling, but inadvertently caused my BP to drop so low it resulted in a grand mal seizure. Don't remember a thing about it except waking in an ER in Atlanta.

All of this was mentioned to my docs over the decades, male & female, and almost w/o exception, was told fainting is harmless, it's the fall that could hurt you, blah, blan, blah. Did I have my period? Did I have PMS? Did I have emotional problems? Did I have diabetes? Was I hypoglycemic? Was I depress... the list is endless. But I never bought into it, because after an event, it made me so sick, exhausted, & nauseous the rest of the day, I knew they couldn't be right. And no suggested a thing differently much less show interest.

Finally a turning point came in 1998 when I was 40. I heard one of my kids throwing-up in their short room down a short hallway. I made it half-way there and passed out completely. I decided that day, after decades of living with the fainting syndrome, which alterd my life in many ways, got in the way of taking care of my daughter, AND being 40, I WAS going to get an answer to what this is no matter how much it took. Again, the thing that worried me the most is I never had a 'quick bounce-back' from one off this episodes. Felt tired, headachy, and just icky the remainder of the day.

So, that day, opened the phone book and made an appointment with the most noticeable cardiologist & clinic in the yellow pages...hmmm...never said I was perfect.

So, he scheduled me for 'tilt table test'. Had me sign a consent that should my heat stop, I have them permission to shock my hear with paddles. I was still very skeptical of finding out any results of significance after decades of hearing it was 'a little problem'; messes with your head; their seems to be this unspoken energy in the room I (or anyone else) was a little off my nut, and the symptoms weren't real, but to me.

They strapped me in several places onto a table, turned the lights down, & told me to relax. After 30 minutes of that, for which I was quite relaxed, they raised the table at a 60% level, head up, feet down. I stood there the 1st minute, thinking 'just another wild goose chase', complete waste of time', 'they'll think I'm nuts'.

And then it hit me like a ton of cement, out-of-the-blue. Probably just under a minute. It is the worst feeling; told them I wasn't feeling good, could they please lay my table back, I was feeling hot & sweat...then nothing but blackness.

When I came too, I was quite sick to my stomach. They told me I was out cold in the 2nd fastest time in their records. And that my heart had stopped beating for 6 seconds. They gave me epinefren (sp?) which got my heart beating again, but had to stay in the hospital the rest of the day because my BP & pulse stayed low & wouldn't come up. Explained to lots of docs over the years that's what if felt like, but no one was interested. This doc put me on a combo of an anti-depressant & Beta blocker. I tried the beta blocker in my 20's when doing a treadmill, but in spite of my BP rising with my HB, it just stopped rising, and my BP crashed. Again, no answer for it but to put me on a beta blocker, but about 4 months later, I realized I'd become incredibly depressed & wouldn't take them anymore.

The cardiologist in 1998 said I have "Neuroally Mediated Hypotention"; an electrical malfunction between my brain and heart which told my heard to pump hard when it was empty, causing the fainting; if working correcty, should tell my hear to pump hard to disperse the blood in it if it was fool.

A few years back, around the time the subtle symptoms of PSP were just starting, I went to see a cardiologist in the same group who did the tilt table in '98. I had noticed for somtime my fainting events were no longer following their usual triggers. And, now, the came with no rhyme, reason, and a much shorter window of time when the fainting sensation began. And it worried me. A lot. I had woken up the morning after Christmas before I saw her in which 2 fainting events woke me from sleep and scared me to death. Wanted to call 911. Drenched in sweat w/o relief. Illogically told myself I'd be okay; didn't want to scare the girls. The first wave lasted about 30 minutes; just as I was starting to feel better, got hit by the second wave, again lasting about 30 minutes. I thought it was my day to die. I also had one more, the 1st actually, where it hit me out of the blue while driving to an appointment. Was about a block away, couldn't see, put my car in park with the keys in it, layed down on the pavement and tried to ask for help. Was latter told, I had almost no BP and was the color of a skeleton.

I have been worried for a great while how my fainting comes on much more suddenly, and for no reasons. I've laid on store floors, parking lot floors, on a street, etc. I've been resolute in not letting me completely lose consciousness because I know it's possible my heart can stop. and, please correct me anybody, but it's my understanding that if you brain goes w/o oxygen for 3 minutes, short of a miracle, that's it. Your life is done. So I must say, for as fequently as this happens....at least 6 or more times a week...I've been doing quite a job of not letting myself go, or chancing it. I am simply not ready.

When the E.R. Doc gave me my discharge papers, he clearly attributed my fainting spells and their more recent variations to PSP Progression. Then went on to state his strong opinion of my driving MUST STOP that day; Tuesday.

But his references to my fainting events acting differently over the past few years because of my PSP, references to Nuerally Mediated Hypotension, etc., to me thinking a curious.

Having started fainting at age 3, with great frequency to the present, all of the falls, head injuries, stitches I've received, lost days of work etc....I feel like I'm coming full circle-again. All my life I was told there was nothing I could do about it but avoid my triggers and take more meds, which disagree with me.

It is very late, I'm very tired, but know from my research last night, I've created short cuts for many sites for Nuerally Mediated Hypotension. I just can't pull them together right now. But to my surprise & delight, I found references between this type of fainting & Parkinism-type disorders. Most importantly, and for the 1st time in over 50 years of dealing with fainting events, they are now using pace-makers, with success, to manage to faintin episodes down to few compared dozens.

So this is my plan. I'm seeing my Internist 4-1 to push the pacemaker heavily, knowing there would be much to be done between Point A and B. I see my Nuero the 10th. Doing the same thing with him. Pacemakers are a pretty routine thing, done every day, across the world.

While I can now accept easilier that I am at the end of the road for driving, there's this small hopeful voice in me that should a pacemaker all but make these events go away, there is still a possibility, tho small, I can make small local trips and give me just that bit of independence.

I also know that if I'm fortunate enough to get a pacemaker to manage my fainting events, I still may have to surrender my license due to diminishing eyesight.

But, were I to get one, and it signifcantly managed these unprodictable fainting spells, the quality of my life would still take a giant step forward. After dealing with just that for 50 + decades, what a simple pleasure it would be to go for a walk, or walk in a store, or putter in my gardens without that apprehension in the back of my mind 'is it going to happen today?'

So along with PT, OT, speech therapy which is all still getting sceduled, am still taking my vit D, Co Q10, and Mr. Jones, my daily teaspoon of cocnut oil...

Know this is way too long and it's way too late.....overlook spellings & other things that don't make sense.

What a week it's been. My daughter came home from college for spring break on Fri. Saw an off campus doc Mon the 18th. Was prescribed Amoxicillin for tonsilitis. Practically grew up on it via strep, ear infections, tonsilitis, etc. Picked her up Fri the 29th. So she was 4-5 days into taking it; said her tonsils felt better. But that afternoon, she broke out in a rash of the likes I've never seen. Started on her chest/back. Very itchy. Got a late appt with the family doc. Seriously believed it was an allergic reaction to the RX. Said it didn't matter how many times she'd already taken it, but sometimes the body puts on the brakes and says

STOP! NOW! and will turn on you. Saw 5 different medical professionals. All said the same thing. Severe allergic reaction to that Drug. Tho her last dose was Fri. morning, by Monday night it was EVERYWHERE. From the top of her scalp, to the insides of her ears, all over her face, back, tummy, down her legs to between her feet & on the bottom of her feet. I took her to the hospital Tues morning because she was freaking out over the itching. In the few short miles, whatched it spread from her forearms to the palms of her hands to between her fingers.

Poor girl. The gave her a few bags of good stuff, plus a shot of Benadryl then Lysteral. Feeling better yesterday, so left the rest of the weekend to be with him. She earned it.

And I have been spending Tues night & today dealing with major plumbing problems in our new abode. He's coming back tomorrow cause he thinks he has to tear one ceiling & perhaps 1 wall out to get to the pipes he needs to. About $1K.

So, if I've overextended my welcome for this posting, or if more alert, could've said and maid the same points with a lot less words, sorry...too tired, too much to think about.

Love,

Judy

[jillannf6]

jhi judy

i ha eread your post and have never heard of this neurally mediated hypotension but a pacemaker woudl be a good solution

i worked out the cost of runnign my car andwith the insurance hwich paid out after my crahs it went for alot of taxi rides !!

and friends givign me lifts when i coudl no longer get the bus

the main problem is a lack of idnependence and not being able to just go somewhere btu it is not the end of the world

lol \jill

and happy easter to you and your girls

[Hidden]

Hi Judy, sorry to hear about your near miss. I was interested to note your history of fainting/seizures, Mum had a period in her early 20s where she had grand mal fits which lasted for around 8 years. I often used to have to make her safe and get help when I was a young child and her last fit was when I was 16. The fits were always when mum had a lot of stress going on, such as a load of appoimntments in one week etc. Mum then had the customary 5 years fit free and was able to learn to drive and even have the odd drink. My very first post on here when mum was diagnosed last year was to ask if anyone else had a history of fits as I know when I became a nurse later on one of the first things we learnt about epilepsy is that the drugs they used then (Epanutin and Phenobarbitone) were likely to cause brain damage long term and it was the first thought I had when mum was diagnosed with PSP as no doubt everyone starts to think 'why?'

I will also add that during the middle stages of PSP mum suffered with Low BP and this would happen quickly on standing so she was having fainting type falls when getting out of her chair which of course made every one very nervous about her being on her own. I stopped her taking her BP medication as it had been prescribed for a brief period of HIGH BP and had not been checked. This was enough to prevent things continuing and she was always fine if she remembered to get up slowly. This was reinforced by her rise and recline chair. I have read somewhere (as I too have done a lot of research) that low BP is itself common in PSP and Parkinson's Disease.I did have to remind mum that although she felt fine and that PSP had happened that she didn't really want to have other disabilities on top of her PSP. Her decision making was a bit rubbish sometimes. For example she paid a man to paint the outside of her house AFTER it was sold and paid in cash up front despite her never believing in doing that in the past. She also began making her meals in a very strange way, like forgetting to put the meat on but preparing the veg ready to dish and then realising. So really I was glad she had stopped driving as she would have been a menace to other road users and possibly ended up with serious injuries herself to deal with. As it was she had endless wing mirrors broken in her local journeys for up to a year before she stopped as her judgement was clearly affected with her vertical gaze issues beginning. Her stopping reflexes wre a lot slower too and she ended up in the back of someone else's car one day.

I agree with the other poster as the upkeep of a car with tax MOT insuance petrol etc are huge and mum was quite independent getting a taxi. It actually was a lot cheaper in the long run. She got to know a particular driver in the process and he was really good with her.

So it's not the end of the world, just a step on the journey which you may not want to take but you will get used to it and adapt as you are young and still have a lot to do yet.

Hugs xxx

[Kathy]

Hi Judy,

My goodness you've had a busy weekend!!

I hope things are settling down now? I do hope you have decided to stop driving at least until you get a pacemaker. And I do hope that a pacemaker will give you some relief from your fainting spells.

Your symptoms and history sound very much like something we call postural hypotension in England. It's a sudden drop in blood pressure when you change levels i.e lying to sitting. sitting to standing etc. That, too, is associated with Parkinsonian conditions.

Please do take care

love Kathy

[JudyJ]

Kathy:

In fact, in the States, it has/can be referred to a postural hypotention...boy...I'm learning more and more.

What both delights yet perplexes me, if not irrititates me a bit, is I've been fainting since I was 3 years old. And never stopped up to and including the present; the only difference is when my fainting events started coming on very quickly w/o any know trigger, it scared me to death.

Again, can't adequately put in words how the Nerually Mediated Hypotension has affected and altered my life since a small child. The number of things I couldn't participate in because "she might faint". The number of times my BP was so low I could barely put 1 foot in front of the other.

And I functioned that way thru my life. Doctors - not helpful - but for the 1998 tilt table - the one I saw a few years ago to explain my fainting events were coming on very fast, not following the triggers, and could we at least repeat another tilt table to confirm or not my time to respond to an oncoming event was much faster. She was bored, disinterested, didn't see the merit in repeating the test. She did suggest a beta-blocker; when I told her this has been going on since 3 and have had several treadmills since my 20's, put on b-blockers & had an adverse reaction, she did suggest I try a round of lo-dose Midirin. It is used in chronically ill patients to raise their blood pressure.

I took it to my pharmacy. For whatever reason, my insurance covered a couple of bucks but stuck me with somewhere between 200-300 retail. Think it might've been because a generic wasn't in place yet. Takes 7 years here in the States for a brand name to be on a shelf before it can go generic.

So I said, no thanks, can't afford it and left. Went home & looked it up; glad I did. Can be a little tricky. Both my parents & all my siblings ranging from age 41 to 55 have high blood pressure and are being treated for it but me....no doubt because of the hypotention thing.

Monday, when I see my Internist (yes, I've arraged a ride:)), I'll be opening a new can of worms with my request for a referral to see somebody who knows about this disease and the Nuerally-Mediated-Hypotention. Again, until I started researching it the other night, I had NO idea they now use pacemakers, from my impression, with some fequency, to help manage the fainting events. I've done the beta-blockers a few times. I'm on and have been on a SSRI (sp?) uptake inhibitor for decades which is supposed to help; it hasn't.

I have to conduct myself appropriately with both my Internist and Neurologist in pushing the pacemaker idea thru; sooner the better. I'm in the early stages of PSP and am, most days, decently cognitive. My daughters are 20 and 21. How could I be a bad candidate to try this?

Again, going forward, I know darned well I will have to narc myself out and surrender my license either due to worsening visual problems, or if I do get a pacemaker, it doesn't work, and I have to continue to lived with that burden, and a burden it is. Been telling my Mom since a small child "I need a bigger engine." w/o really understanding what I was trying to say.

So imagine my shock the other night when I started reading and alot of what's ailed me over 54 years seems to be at least parly connected and coming full circle. I'm only 54. That is YOUNG. But I will stare down a 30-something person who says the "50's are the new 30's!". Nonsense.

And yes, I made my mind up yesterday and am heeding your advice...I am off the road during the month of April

at least 90 percent. Not worth it. Maybe 100 percent after both doctor visits; will just have to take a heck of a deep breath and adjust my attitude to what 'my new normal is' - again. Even if the license, goes, still want that pacemaker. Can only help me feel better, get more oxygen to my brain, clear-up some of the dementia, etc. If I get a no, I will demand a straight-up answer, not an answer that's mottled in semantics. The only no I'd accept is if it would be life-threatening for whatever is going on in my body. If it's a 'no because it's too late', I will ask for all the testing I had last summer be repeated; those objective tests results don't lie. Can't imagine or believe I could have gone from early stage to late stage in 9 months.

I do know how to be a good advocate for myself vs. alienating a doc, but must admit, feeling a bit frayed around the edges.

Kathy, thanks for your support, concern, love, and respect; mine comes back to you.

Judy Johnson

MN

USA

[Susan789]

Judy, my heart goes out to you, the disease is terrible, coupled with the fainting even worse, but whether the fainting resolves, your disease will not allow you to continue driving. Giving up your license is huge deal, and loss of independence, but causing someone else to lose their life, or their independence because you insist on driving when you should not is unthinkable. We all have a responsibility to others to make reasoned decisions. Which why we don't drink and drive, we don't drive when we are too tired. We don't drive when we are ill. In the end it is not about you, but about others, your independence cannot come at the cost of others. If you think "just local" drives are safer, think again. Most accidents occur within 10 miles of home. We have a local family who lost their husband/father, because a elderly gentleman here decided to make a quick trip to the grocery, taking the back road, when he had already been advised not to drive. He failed to see the man working at the side of the road or appreciate the danger his action was causing others. It is not about you, it is about you caring for others, and making the sacrifice in your life, so that they can be safe. The same way that a soldier makes sacrifices so that we can be safe. This is your battle, and your sacrifice to make. It is not fair, it is not easy, and you certainly didn't sign on for it, but you are the soldier, and you need to do the right thing.

[JudyJ in reply to Susan789]

Susan:

Thanks for your reply. You're 100 percent right. I just needed sometime to work/think thru it. A life changer it is. Have a wonderful weekend and thanks for your support.

Judy

[tisha1953]

HI judy, You gave me an interesting read and a lot to think about, luckily i don't drive, but i do get dizzy when out walking and feel feint. This seems to happen when i am in crowds of people, i think they think i am drunk or on drugs, i have to hold onto my Husband or i would be on the floor. My BP usually goes up when stressed, its sounds like the blood is having trouble getting to your head, have you had a CT scan with the dye injection? This is how they found out about my blood flow.

I hope you get back to driving again, can you not get someone to sit with you when driving on a good day? They could watch for symptoms., just on short trips, so you don't get over tired. Good luck with the Doctors, if anything like here you will have to push your point, once your over 50 and have a diagnosis they don't want to know. Happy Easter xx

[MaddyS]

Hi Judy

Good to hear that you are "definitely 100%" not going to drive again!

My dad, luckily he was in excellent health until he died aged 98, had to give up driving at 84 years old, due to his bad eyesight. He was furious, blamed silly doctors, options, etc.

He did, however, admit to me when reaching 90, that he was glad they did take his license away before he had an accident.

Hubby with PSP had to give up about a year before his diagnosis, he suddenly sat in the passenger seat and told me to drive.

Take care, one door closes, hopefully another one will open.

Happy Easter, Maddy

[JudyJ in reply to MaddyS]

Thanks, Maddy. Touching stories.

Must admit, tho, I think I felt a little like your Father when I was 'told', 'talked-at', 'had the choice taken from me', I was a little less than pleasant. It's a hard thing to be told at any age, but cripes, I'm just 54. And, the older I get, the younger that seems:)!

And, as with your Father, but much sooner, like later that afternoon, I did feel relieved because I had been worrying about it so much. Love how your Hubby handled it; no discussion; just did it

The hardest part which I haven't done yet, is telling my 21 year old daughter, Katy, who has special needs and opted not to drive for safety reasons, that we have no transportation. I know her well; we also moved recently; I believe she will put on a stoic face but feel trapped inside. Went thru several adverse years a while back; no working vehicle for almost 2 years & very limited public transportation. Need to give great thought on how to present this information; need to do it right; refuse to invalidate her feelings if she becomes upset. Because it is a life changer & kind of a bummer. Need to get creative. Wish me luck.

[MaddyS in reply to JudyJ]

Hi Judy

To look at it on the bright side, my dad used to stand on the pavement looking at drivers, pointing out the ones who looked older then him: "Look at him/her, he/she is older than me and still driving - why can't I!" We would break out in laughter, which annoyed him even more, but he did see the funny side eventually. No doubt you are not going to do that but it helps to try and find a lighter side to ones problems.

Do you have care hire firms with drivers (at a reasonable cost) in your area? If so you could take advantage of that. In the UK we have something called 'dial a ride'. A mini van comes and picks you up and transports you to wherever you need to go, i.e. hospital, shopping, friend's house etc, then brings you back home again at an agreed time.

Take care

[carehope]

Hi Judy ! Yes , I'm familiar with neurally mediated hypotension and know any number of people who've had the tilt table test done because this situation also can occur as a result of having Lyme disease, believe it or not !! Since Lyme disease is endemic where I live, doctors who are familiar with it's symptoms and treatment will order that test if their pts. are reporting symptoms such as yours. Crazy stuff. Yours is obviously a very legitimate claim and I hope that you can impress upon your doctors the need to intervene in a more effective way than oral meds which you had problems with anyway. To have this happen so frequently is obviously life threatening and it sounds as if the pacemaker may be an excellent approach. I would hope that whatever has been triggering the event could be overridden by the pacemaker. You've done the research on this. I hope that they agree that this could be the case. Wouldn't it be wonderful to not have to deal with those horrible and dangerous episodes that you've had your entire life, anymore! As you said, pacemakers are a very routine surgery now . Lots of luck and looking forward to hearing good news. Have a Happy Easter and sending lots of positive thoughts and energy your way. Take care, Elise

[JudyJ in reply to carehope]

Are you in the States or elsewhere if you don't mind me asking...no, I never have heard NMH (type of fainting) linked with Lyme's disease to the extent tilt table tests are used as a diagnositic tool. Wow. You're right; crazy stuff.

I see my Internist 4-1 & Neuro 4-10. When I say 'I want a pacemaker and am as good of a candidate for a few reasons you'll see', believe will only get me about 10 percent of the way there. I may have more luck/interest with my Neuro.

Just my opinion, just my experience, and I don't know if you're in the States or not, but in the States it's become increasingly obvious over the years the 'managed medicine' such as Allina, HealthEast to name a few, are actually at the mercy of their profit making risk providers when it comes to getting tests/procedures approved or not.

Could go on and on about this. Don't want to get myself all worked up about this issue; need to reserve my energy for advocating for myself.

If one or both say 'yes, let's try it', that means being referred to a Cardiologist. Both Docs are with 2 very different and large health systems. Know which I prefer & not afraid to say so.

Then comes the (usual) weeks long wait to 'consult', with as many records as I can get my hands on, and reinvent this 5+decade wheel. Just my experience, but seems no matter how many records I bring, or forward in advance, the doc sees them for the 1st time when he/she sits down to meet me. Grrr.

...just a side step...why can't/won't doctors just pick up the phone & call each other?

Since my PSP diagnosis, been to several doctors for more than a cold who have no idea what PSP is and either ignore it or act resentful that I can talk eloquently about it while they stare back at me. Am I the only one it's happened to?? Doubt it.

Then the doc will either make a quick decision to show me the door...or...possibly show interest and know what both conditions are.

And probably schedule a test/test (with weeks of a wait).

Do I sound jaded yet?????

Sorry. I admit to having a bad attitude tonight. It's "one more thing.". Could turn out to be a life changing to the positive, wonderful thing....or, I could be quickly dismissed.

I've been thru it so many times before; not unlike the rest of the PSP Community, I know. But the stakes seem much higher now since the event at the ER this week. Until I read on the discharge papers that the doc said my fainting events are worsening because my PSP is worsening, really rocked my world. Until that moment I had no idea these 2 things were connected. Then I researched. Kept thinking what a wonderful, life changing procedure to get a pacemaker after carrying the burden of this fainting nonsense since 3. What a glorious thing. Til I started thinking of the complex medical system we have here. Have to handle it and myself right to get what I need to greatly improve the quality of my life.

Then I started getting a little mad tho. Saw a cardio 3 years ago cause my fainting was more frequent, less warning, and not following the triggers. She must've known something about this. In fact, she said her husband, also a cardio, his specialty was working with fainters. No mention of a pacemaker from her; she tried to rush me out the door, so didn't feel inclined to ask her for a referral to her husband

If I get with the right cardio who's familiar with both NMH & PSP, if I get a no (hopefully not), but if I do, I want a concise answer. Is it too late? First time I heard of a pacemaker as a theraputic tool to lessen the fainting spells I've been having regularly since I was 3. Forget driving, but the first hope I might not be bound by low BP, fatigue, falls from these events, feeling sick the rest of the day because my system doesn't rebound after an event like other people. It has altered my life in so many ways.

So...for the 1st time on that front in my life, I have hope, which arrived in a very serendipitous way. So I'm excited. Hopeful. Apprehensive of all the hurdles to jump in the way. A bit dubious after all these decades of having it affect me quite profoundly, there may not be a cure, but something that could make a huge difference in my life and quite happy, even tho I'm stuck with PSP?

I'm all over the place...eeek. What a week. My daughter who came home for spring break was but on an anti-biotic for tonsilitis while still on campus and had the MOTHER-LOAD of allergic reactions to it after taking it for 4 days....every day saw a doc. Couldn't believe what we were seeing (head-to-toe, itchy rash, from her scalp, to inside her ears, complete torso, arms, palms of her hands, inbetween her toes; you get the idea) to a drug she took often as a child. Had to take her to the ER Tues. She was sobbing as she was scratching everywhere; they hooked her up to benadryl; she finally got relief. Had to have a plumber here Tues eve, yesterday & this morning due to back-up.....$1200 later...clog-free.

Now I'm just sounding like a cry-baby. Having a heck of a pity party. Don't follow my lead I used to enjoy a good glass of wine...but now the meds mess it up...sigh...see, there I go again! Don't even like myself tonight. Yuk:(

[jimandsharynp]

Judy, Now that you have exposed your driving ability to be faulty and posted such on this site do you realize that if you have an accident you would probably be sued for every penny and other asset you have? I'm talking about if another person was hurt due to your driving. Since this site is on the internet an interested party could probably get access to your postings. I'm not saying this to scare you but only to make you aware of your exposure each time you get behind the wheel. Please accept this message in the spirit intended (to be helpful).

Jimbo

[JudyJ]

No worries; thanks, I did think of that. However, I'm so resigned to 'this is it', meaning no driving, I just posted honestly. It won't be an issue. Have an appointment on Monday with my Internist; have already arranged for a ride. Going down a lot easier than I thought, part of that is because it's been discussed a lot on this site...uh...actually think you replied to post of mine telling me to drive is ill-advised. If I recall, I think I did a decent job ignoring you the 1st or 2nd of your posts/replies; lol.

In spite of what I did or did not say about should or shouldn't I drive, I had already been worried for weeks before that about my deteriorating driving skills. But I got stuck on how not driving would add complication to more complication; just don't have people who make themselves available to us. (BTW, we're not weird or anything;lol).

Bottom line is I knew it wouldn't be long at all before I finally let go. My vision has gotten too limited; I recently took 2 different left turns on a yellow that were way too risky, and a year ago, wouldn't even considered. My daughter was with me both times and let out a large gasp. That had me almost completely there in terms of stopping driving. I don't believe in coincidences; what happened on Wednesday was meant to happen. I would never forgive myself if I caused an accident that injured or killed 1 or both of my girls, and/or a pedestrian, and/or a person or persons in another vehicle.

From 80-93, I worked for a major insurance carrier in the St. Paul, MN, area. I was always in the Liability Claims Division. Early years, handled a lot of auto accidents, slip-n-falls, etc., & worked up to handling mainly Professional Liability Claims, particularly medical malpractice. And, high monetary damage claims such as bad car accidents. What I saw in some vehicles at salvage yards, I wish I could forget, or what I was experiencing sitting across a confrence table talking to family members and their attorney of someone who was seriously injured or killed in an accident. Didn't matter what I 'felt', had to look stoic. Trying to put a monetary value on someone's life is just the worst thing; glad for the work experience, but to be the cause of so much pain? I can't imagine.

So, in spite of my sometimes blustery posts, the wheels in my mind are usually already turning to what makes sense, is fair, loving, and kind. Not driving is a life changer not just for me but my daughter with disabilities who doesn't drive. Not easy no matter how much sense it makes. But that's the way it goes.

Judy

Judy

[tisha1953 in reply to JudyJ]

Good for you Judy, we are all behind you all the way, i am sure there are quite a few people that have had to make the same decisions, so you are not alone. We are lucky here (UK) we have charities such as 'Good Neighbors', 'dial a ride' that we can book for lifts when needed and over 60's (not that you have reached it yet) have free bus passes. Keep strong and try to relax for a few days and give your brain a rest, you have been through a lot this past week or so. xx

[carehope]

Hi Judy! Happy April 2nd ( seeing as I didn't get back to you on April 1st.) I knew that you had an appt, with your internist and hope that you got somewhere with them. Wouldn't that be great!! Yes, am in the USA ; NY(LI).

Not to get my ire up too much but just to let you know that I definitely can identify with your frustration related to "managed care". I've been referring to it for years now as "mismanaged care" . What a sad day for healthcare when HMOs came into the picture!

Another bureaucratic layer that has to be paid! How anyone could think that people who have nothing to do with the patient,their dx, background, their doctor, or their care is qualified to make medical decisions for them boggles the mind,doesn't it ?!

It falls upon the patient to fight for the care that they deserve, first as a citizen, a taxpayer, and someone who typically is paying for their insurance ! The person who is in the most difficult position, the patient, has to fight every step of the way to receive the care that they need!

A friend of mine who has dental insurance through her job ( something that I wish that I had but never did ) just told me that before she could have a " crown " done by her dentist, they had to send the results of an x ray to someone to have it approved ! Unbelievable!

One more divergence before returning to NMH & PSP - Yes, Why don't doctors communicate with each other re: their patients in cases when it is clearly in the best interests of all ? Actually, the best doctors I know do just that, but as we know, good doctors are not all that common, just as good and great professionals in any field are not the norm.

As I've often said to patients that I deal with," You should look at your doctor,and any professional in healthcare the same way as you would your mechanic, electrician, painter, plumber, etc..." . If they're not caring,professional, helpful, appropriate; and don't have office staff who are likewise, then the pt. needs to find a better doctor. Most doctors are poor to mediocre. We're paying their salaries, so we have a right to have expectations that reflect this. I think that one of the other facets of this whole healthcare mess is that lets face it , the majority of consumers are not equipped with the knowledge they need to take an active part in their own healthcare , nor do they feel any responsibility to do so though that's been changing somewhat over the years, I think more out of necessity than anything else! There have been too many news stories of horrible consequences related to malpractice and negligence. The incredible thing that really angers me is that all of these doctors get paid, typically very well irregardless of the patient outcome. There is no oversight of private practitioners. Or, the best physicians will be persecuted by medical boards of review if they dare to treat outside of outdated or ignorant guidelines. Oh well, each small victory accomplished usually only through a pt's persistence and hard work such as you've been doing , makes for the changes that those in power are too lazy to address!

So, I in turn have vented a little. There's a lot more where that came from, but I did want to let you know that I really can relate to what you're going through ! It's a good thing that you're capable and experienced. Still, awfully draining when one is ill and needs action, not a patronizing or indifferent response from the "professionals" who are supposed to be helping ! I've also always been impressed when a Dr. has admitted that he or she doesn't know , but will either find out and get back to you , or they refer you to the best person (in their opinion) for the job !

So, I hope to hear that you've made headway with going after this long standing and serious health issue of the fainting spells. You've done the homework for your doctors. They should appreciate this and you a lot ! Looking forward to your hopefully good news !

Take care, Elise

[JudyJ]

Elise:

Sorry for my very late response. Sounds like we could have a very long talk about the broken medical system in this country. And it isn't happening to just us, to so many others. People need to speak-up and collectively to try to crack a wall in this system, but is so driven by power & money, feels almost futile. But, being-out spoken, and a good advocate for myself & daughters, I do manage to get my point/s across at the necessary times.

But...get this...about my Internist's appointment on 4-1 which held great significance to me. I've been seeing her 6-7 years, and fairly often because of my medical past. She knows me well, always takes her time with me, and never rushes me out the door. However, I was a little concerned because I hadn't seen her since my 8-12 diagnosis but did see her during June or July last summer. I thought she might be a bit upset with me because I hadn't come in sooner to talk about the PSP diagnosis, etc. And the reason I was nervous was because I have great respect for her and we have enjoyed a long and good Doctor/Patient relationship.

My Neurologist and other health professionals as well as the hospital I've been going to are in a different major health system than my Internist's, tho, I always emphasized to be sure to send her a copy/summary, etc. of any procedures, visits, or hospitalizations I had.

So during my appointment, she was as cordial as usual; asked how she could help that day while busy scanning her laptop for newer-newish info about me. Apologized for not coming in sooner, but the PSP prompted a series of major decisions, including moving to a one level-environment, finding people to help renovate my existing home for sale, and just wasn't feeling well.

She acknowledged in a positive way that my Neuro and other providers outside her health network had done an excellent job sending her testing, office visit, hospitalizations reports etc.

I sensed within the 1st few minutes something was wrong, tho, and it wasn't about attitude; she acknowledged from what she read (speed-read) from 8-12 to 4-13 that I had PSP. While I waited I heard an occassional "huh" from her. I finally asked, even-toned, tho I was starting to feel some frustration, "Do you know what PSP is?". She looked me in the eye and said "No."

I respected her for her honesty but felt my stomach drop anyway. I know PSP is a weird one; pretty rare. But what I couldn't make sense of why or during the process of receiving the reports, she didn't perhaps contact me to come in for a consult? Is that too idealistic?

PSP is a serious situation and tho she acknowledged getting the numerous reports over a period of many months, she hadn't read any of them. Or, she would have taken a moment to get familiar with PSP, don't you think? What does it take??????

I will admit she looked abit sheepish but it was a very non-productive appointment. I will also admit I felt let-down by her. Months of reports and on 4-1, she was clueless.

I struggled to maintain my composure and found myself once again in that awful space of having to educate my Doc on what PSP was.

When I brought up the fainting, which she's know about since the beginning of treating me because it is such a problem for me, I explained that via research, I may have found a link between Nerually Mediated Hyptotension & a possible treatment option of a pacemaker (aside from beta-blockers for treatment; tried the 2x's in my life; could not tolerate).

She denied knowing what NMH was (after all this time) and kept trying to explain I'd have to see a cardiologist (probably will), wear a holter moniter etc. Told her I've done this almost once a decade over the course of my life, including this January. And the problem wasn't within the heart itself, but an in-born error of an electrical signal from my brain to m heart.

Once again, and on the fainting issue (minus the new PSP factor/pacemaker), tho I've explained this so many times before, I found myself re-explaing again. Why?

I see an Internist because I have more complicated medical issues. I know no one is perfect, & I'll cut her a little slack because she's served me excellently over a number of years. But it was down-right scary to realize in spite of in the in-flow of info she received about me over many months, it was clear she hadn't read any of it. Stupid question, but don't most professionals in even higher positions, and lower positions, prepare for their day and take a look at the charts of people who are coming in, especially since we need a higher level of care? Mind-bending.

The only contructive thing that came out of that appointment was she said my swallow study was normal, thankfully, be ordered an upper GI to see if there is something in my esophogus out of range of sight that's causing my aspirations, or the sensation something is stuck & results in immediate coughing fits/spraying.

I'll allow her this one bummer appointment; won't risk more; and the reason of choosing to go forward with her, is we have a long-term relationship that's been positive, and my Neruo said he wants me to stay with an Internist, too. The thought of the overly-tedious task of reinventing my complicated wheel is more work than I'm up to at this time.

What a mess our medical system is here, eh?

Take good care you yourself, be your best advocate, and offer to advocate for others who may need it. We might not be able to fix the problem, but we can at least create a positive ripple effect.

Judy J

From the Frozen Twin Cities, MN