ljoeb Posted March 25, 2008 Report Share Posted March 25, 2008 Just wanted to say, Hi to everyone! I am one of the rare males on this forum. I have learned so much over the past several months I have been reading posts. Thanks for all your input!I too, have been on a "journey" since Nov. 2005. Long story short, I was diagnosed with "sick sinus syndrome" (I had a resting heart rate in the 40's and at the time I was 300 lbs.)and they popped in a pacemaker in Sept. '07. I was also diagnosed with orthostatic intolerance after over a year having pre-syncopal spells upon standing from a seated postion only and walking a few steps across the room, and being confirmed by two failed TTT. My EP doc basically told me that I would never drive again and would probably not be able to work, to put on support hose, and stand up "slowly" when getting up. What a deal!!Thanks to DINET, I found a doctor in Dallas, Dr. Amer Suleman, and have been under his care since Nov. After a battery of different tests, he determined that my problem was being caused by low blood volume. He has been able to use my pacemaker (I'm beating at 85 bpm) along with trying different meds to try to get my condition "more liveable." We're not there yet... but I think we are making progress. I just started florinef last night and hopefully that will help.I am still off work and the State of Texas frowns on people with pre-syncopy or syncopy driving. I am supposed to have 6 months episode free before I can legally drive. Well, that starts over every day, sometimes several times a day. I do get out every so often.. it is awfully boring just sitting around the house.Question: does anyone else have mass confusion at times? I can be walking through a grocery store and its like I'm a wind-up doll winding down. I start walking like an old man, I get "lost" if I'm by myself, and I can't make a complete sentence without mangling words or making words up or adding letters to words and just sounding completley drugged or drunk. (another reason why I don't drive much). I even laugh at myself because I can hear how stupid I sound. That is followed by severe fatigue and I end up sleeping for 2 - 3 hours just about every afternoon. (My mornings are generally good till about 11 or so, after I have been up for a while.)Thanks, and I look forward to meeting many of you! Joe Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 25, 2008 Report Share Posted March 25, 2008 Hi Joe,You're not the only rooster! I'm here on behalf of my son and myself. My son, now 15 y/o also has a crazy low pulse, resting 39BPM and NMH or NCS (whichever you prefer.) He's on a good regimen of florinef, salt, and fluids and isn't lightheaded too much anymore...except if he's been deprived of sleep or travels. He also requires a lot of sleep- all day on the weekends, if he can. And, cognitive problems- oh yeah! Because he's in high school, we've had to document them (as he falls into an LD category) despite the fact that he manages to make almost straight A's. He's got major auditory processing problems. He basically doesn't "get" it if it's spoken to him. He needs a visual reference, like notes, etc., for a lecture to be meaningful for him. When he tries to speak, he's often groping for the word and can mangle things pretty well himself. He's also unable to remember anything he hears. His auditory memory is basically non-existent. He compensates beautifully (as most of us do!) by having extremely strong visual skills. If he sees if once, he's got it for life. He doesn't fall too far from the tree. I recently lost my shopping cart FOUR times at the Super Wal-Mart. I earnestly walked up and down those aisles repeatedly, trying to look inconspicuous:-)Welcome, it sounds like you're going to fit in just fine. Sorry you needed us....but some of us do get better. My son became ill at 12 y/o, missed a whole year of school and almost needed a feeding tube to eat. (He was 5'8"and 100lbs.) He's now back at school full-time, (6'2" and 175lbs), eating me out of house and home, and playing football. He's an inspiration to me. I run around 75% of "normal"- whatever that is. Sounds like you've got great docs. I bet you're closer to your old self soon. Julie Quote Link to comment Share on other sites More sharing options...
sarct Posted March 25, 2008 Report Share Posted March 25, 2008 Hi, Joe. It's nice to meet you. I am sorry things are going like this for you. I hope your doctors can work to get you regulated and driving one day soon. I wanted to say that I was put on florinef once a couple years ago when I mentioned I get dizzy. The doctor didn't know why I was dizzy. She looked in a book (I remember her opening the book up) and wrote a script for this drug. It made me retain so much water though. I was swelling from it. I was quickly taken off the drug and I stopped telling her about my issues as I realized she was clueless what to do. I hope it works well for you though. Sounds like you have a good team of doctors. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted March 25, 2008 Report Share Posted March 25, 2008 Hi Joe! Sorry you had to find us. It sounds like we have a lot in common.... Brain Fog for one! Quote Link to comment Share on other sites More sharing options...
corina Posted March 25, 2008 Report Share Posted March 25, 2008 gayla, please don't start about the brain fog!!!! i have so many problems with that!hi joe, welcome at the forum. like you (and gayla and so many others) i have a lot of trouble with brain fog. i also start walking/talking like drunk at times. i think it has to do with standing up too long (that goes for me at least). that is also one of the reasons i don't drive much. i haven't been told not too (and i'm not a fainter), but i trust my own common sense. i won't drive if i don't know for very sure.good luck on the florinef. unfortunately i couldn't tolerate, but i'm thinking of giving it another try. you never know, maybe my body will tolerate after several years. i do hope it will work for you and give you a better quality of life!good luck and take care,corina Quote Link to comment Share on other sites More sharing options...
ljoeb Posted March 25, 2008 Author Report Share Posted March 25, 2008 Thanks for all the encouragement!! In Texas, a doctor has to stress very clearly to patients who have any kind of disorder that can impair their driving, the risk they will be taking if they are in an accident.. loss of driver's license and insurance. So I don't venture out too often. There have been times I have felt "fine" when I left for the store or where ever, and then start back home and realize, "I shouldn't have done that!" So I am really careful and try to stay on back roads where there is not a lot of traffic.Brain Fog describes me well for about 5 - 6 hours most days. Early mornings and most late evenings I feel pretty well. Dawg Tired... we do have a lot in common... age, pacemaker, brain fog and Branson!! That is our home away from home. We are there about 3 - 4 times a year and just love it!! I would live there if I could.. and sell timeshares or work at Silver Dollar City.. what fun! Quote Link to comment Share on other sites More sharing options...
runningshoe Posted March 25, 2008 Report Share Posted March 25, 2008 Hi and welcomeYou described my grocery shopping experiences very well. Search this site for brain fog - there are some funny posts. I have been mistaken for drunk when just potsy. Florinef helps me but I still have symptoms. Hang in there! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 26, 2008 Report Share Posted March 26, 2008 Hi Joe, welcome! I stopped driving in 2005 after my first syncope. My husband and son can pick up almost immediately when I'm starting to have problems, due to speech and walking and falling like a drunk, without the effort required to drink any alcohol!Brain fog is very common. I have tachy brady and got my pace maker a year and a half ago. It has helped a bit. With the pauses and rates of 30 that dropped me like a rock.Driving is a hard thing to give up. Do you have a scooter or power chair? Those can be really helpful in stores and things.I was going to say something else, but brain fog has me in it's grip... morgan Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted March 26, 2008 Report Share Posted March 26, 2008 Welcome Joe,I am here learning for my rooster of a husband and his twin brother, both diagnosed with NCS. Those "drunk-like" episodes you experience were our first clues that something was wrong with my husband and in fact I accused him of not fessing up to having had a few too many a few too many times. We are still celebrating a period of "event free living" which has lasted for about 18 months now and which we attribute to his being treated with a CPAP machine for sleep disturbances. Throughout the past 10 years, my husband has been able to continue working but has had a few month-long absences. My brother-in-law continues to stuggle with more severe symptoms and is unable to work. I hope you continue improving. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted March 26, 2008 Report Share Posted March 26, 2008 Hey! We will have to get together for coffee in Branson sometime! We love to go spend a day or two. I sleep and hubby wanders around. We get season passes to SDC every year - they have LOTS of good benches!I quit driving pretty much after the second time I was driving home from work and suddenly realized I had no idea where I was. Quote Link to comment Share on other sites More sharing options...
maryfw Posted March 26, 2008 Report Share Posted March 26, 2008 I have a question about the "acting drunk". I get the brain fog and mixing up my words but does your speech sometimes slur and sound literally like you have had to many drinks?mary Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 26, 2008 Report Share Posted March 26, 2008 I agree and have had such episodes. I'm doing very well on my Norpace but still consider brain fog my first signal of dropping BP.It would be wise tho to apprise your Dr. of this- if you haven't- because "encephalopathy" has many causes. We are mostly likely Hypoxic encephalopathy.http://www.nlm.nih.gov/medlineplus/ency/ar....htm#Definition Quote Link to comment Share on other sites More sharing options...
pearsjon Posted March 26, 2008 Report Share Posted March 26, 2008 welcome rooster, u have described me so well i think u have been looking in my windows. my only difference from u is that it takes a day or so for me to get to the point of sleeping. i often am very confused when by myself. i make up all kinds of new words. i transpose words, numbers. walk around in circles wondering what the heck i am doing. forget things i should not forget. stumble on words. horrible at recalling words. math was never a good subject for me but now i have trouble with simple multiplication. of course not all the time but more than i want to admit. i have terrible tremors, often when i drive. i try not to drive when i know i am bad. i have lived in the same small town my entire life. 3 years ago i could've lost our local police i knew the roads so well. sweating and freezing just blows my mind. but u will find good help here. and yes maryfw, i slur all the time. people r surprised when i tell them i haven't had a drink in over 10 years. they could swear i am drunk right at that moment. i am often been accused of having vodka instead of water in my glass. it has been bad enough that they have actually smelled my glass. life is funny. to think i used to do this to myself for a buzz. now i would gladly give the "buzz" to someone else. it is a good tool for teaching your children the consequences of drinking, by "example" per se. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 26, 2008 Report Share Posted March 26, 2008 maryf, yes, I will be unable to find words and have long pauses between words, my hubby says my voice gets very soft and my speech very slurred. It took me a long time, but I finally am beginning to recognize when I am having problems. It used to really annoy me when they told me, because I couldn't pick up on it myself....morgan Quote Link to comment Share on other sites More sharing options...
ljoeb Posted March 26, 2008 Author Report Share Posted March 26, 2008 I have a question about the "acting drunk". I get the brain fog and mixing up my words but does your speech sometimes slur and sound literally like you have had to many drinks?maryMary... I can't tell you the number of times people say, It sounds like you've been drinking or on some good drugs! I do slur, and my speech becomes very methodical because I am trying to say the right thing so I go slow and try to spit the right words out... it doesn't always work. Hang in there!! Joe Quote Link to comment Share on other sites More sharing options...
ljoeb Posted March 26, 2008 Author Report Share Posted March 26, 2008 Hey! We will have to get together for coffee in Branson sometime! We love to go spend a day or two. I sleep and hubby wanders around. We get season passes to SDC every year - they have LOTS of good benches!I quit driving pretty much after the second time I was driving home from work and suddenly realized I had no idea where I was.That's when I knew it was time to go to the hospital... I was driving home from work and had to pull over for a few minutes and think where I was going. Not fun at all! I've avoided SDC the last couple of times we've been there... we love the shows though... Pierce Arrow is our favorite!! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted March 26, 2008 Report Share Posted March 26, 2008 Hi! Welcome! Yes, to the mass confusion question. At times that can seem to be my life 24/7. I can totally relate to that. The worst is you do a bunch of stupid things and then later you realize how out if it you were and think did I really do/say that? Quote Link to comment Share on other sites More sharing options...
DaddyPaul Posted March 26, 2008 Report Share Posted March 26, 2008 Hi Joe! Yep, seems like we are in the minority here, but I think we're in pretty good company! I've been noticing a lot more hand/eye coordination troubles, poor balance, and some garbled speech...very frustrating for sure! Quote Link to comment Share on other sites More sharing options...
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