bjt22

Well, awhile back I would have said that "too low" is "low enough to make you feel bad". These days, I'm not so sure. I posted a little over a week ago about my sudden hearing loss. Most evidence is pointing to this being due to my blood pressure and heart rate dropping too low while I slept and depriving my auditory nerve of the needed oxygen for a period of time. So, I'm rethinking the whole thing. Sure, low blood pressure is uncomfortable and makes functioning difficult...however, we're rarely told that going too low can be dangerous. I would consider losing almost full hearing on one side and half my hearing over all as being more than just uncomfortable or presenting difficulty in functioning.

Two errands on a good day. And that means I don't have to do anything the rest of the day. Totally wiped out today because we went to two stores yesterday, side by side, and got school supplies.

I no longer drive. I'm not necessarily afraid of flat out passing out while driving, but I'm constantly light headed, my vision blurs in and out, I can't turn my head without risky at least a few seconds of gray-out/black out, and my concentration level is not nearly what it should be. Occasionally, I'll venture down to the corner store, but that's about it. If I drove myself further, I'd have to be able to get myself, home, too...and that's where the biggest problem comes in.

Frustrating and heartbreaking... it's such an obscure thing until AFTER one knows about it. So good that its now clearer what is going on and can be addressed better. Now that you mention it... measuring heart rate and blood pressure upon standing isn't risky or difficult. I remember getting weird stuff like hearing tests in public school... it seems totally realistic that they could do a basic screening (assuming doing so doesn't open them up to dreaded liability issues). Certainly worth some solid "awareness" efforts. Back 25 years ago, my heart rate was often through the roof. My then-doctor often caught this but had no explanation. His thoughts on the matter? "If your heart is beating twice as fast as it should, it might only last half as long as it should". Yeah.

Oh, gosh...I missed that whole part about childhood trauma. That's total BS. I, too, had a great childhood. In fact, in most ways, I've lead a very lucky life. Few real traumas. Guess it makes some people feel better if they have something to blame their illness on.

I'm a long time Lamaze veteran, so I happen to put a lot of stock into breathing. Without even consciously thinking about it, I do practice methods of controlling breathing all the time. It is helpful. I know another gentleman with a severe case of NCS who went to a therapist to help with these methods, and sure enough, hyperventilation was contributing to his fainting. It wasn't the cause of his NCS, but when he worked on his breathing, he did have some improvement. It's very easy for the body to start trying to suck in more air as blood pressure bounces around and plummets. That could definitely make syncope much more likely. None of this is to say that our problems are caused by simple hyperventilation. Hyperventilation is just probably one more screwy coping technique that some adopt without realizing it. Learning to recognize this and efforts made to control it can only help. However, I cannot do too much of the deep breathing stuff. I will pass out.

I don't want to sound insensitive, but I'm wondering if English is his second language? I've found that when dealing with medical personnel in which this is the case, often they express themselves differently. What he's expressing as "guaranteed cure" might translate into our way of speaking as "good control of the condition". We ran into this after my mother in law had a brain bleed and was in a coma...the surgeon who cared from her was definitely "English as second language", and he kept assuring us that my mother in law was "just fine" and even "doing good" even when she stayed in a coma, ventilator dependent, for six weeks (after which she died). I've seen this on other occasions as well. Definitely something cultural and probably having a lot to do with language. Now. That said. I have what is probably prinzmetal's angina. A beta blocker is helpful for me, along with catapres. Not all beta blockers are equal...I could not tolerate atenolol at all...made me feel as if I were dying. However, labetalol, a non-selective beta blocker, helps me immensely. A calcium channel blocker is worth a shot as well, if you're not currently on a beta blocker.

I have not found anything that is particularly helpful for the nausea that comes from being upright/blood pressure drops. Prilosec helps keep heartburn from making it feel worse, and I try to eat (especially in the mornings) like I did when I was early pregnant...crackers by my bed, get up and about gradually, etc. Unfortunately, the only thing I have found that really works is laying back down until the nausea subsides.

Yes, I do. Many times I just find my legs won't hold me up, sometimes with tingling and numbness going along with it. Often times that's one of the main ways I can feel orthostatic...feeling tons of downward pressure.

I've always been heat intolerant, too. Back in the days when we all wanted to be like Farrah, tanning was quite necessary. Couldn't do it. I'd last about five minutes before getting sick and having to go back in the house.

"Crawled around on your knees".... I forgot...when my kids were all small and dropped a gazillion things on the floor, I would get down on my knees to pick everything up. Would go around the entire room that way, carrying a plastic bag with me. I spent a lot of time with my babies on the floor, too...guess intuitively I knew I couldn't drop them that way? Never could use a changing table.

I love this topic! The funniest: When I was in high school, all the girls wanted to be Farrah. So, in order to get this look, hair had to be done every day. I would wake up at 5:00 AM, get in the shower, and then lay back down on the bathroom floor for at least an hour before proceeding. I even brought my pillow and a blanket into the bathroom with me every morning. Ofcourse, every one asked why I didn't just sleep for an extra hour and THEN get up and shower. I really didn't have the words to explain why I needed to lay down for an hour after I showered, but I certainly understand it now. I also dragged a chair into the bathroom to dry and curl my hair. I've always sat crossed legged my entire life as well. Few times in life have I ever sat with my legs hanging down. Quite unfeminine of me, I know...but I guess I just knew it made me feel better. After the first three or so months of pregnancy, I usually felt much better...in some ways, better than normal. I honestly believed it was something in the prenatal vitamins and went around for years singing their praise.

I think this is common. Any time the heart is beating either too fast or too slow, or changing from a rapid to very slow pace, the electrical system in the heart can have a few irregularities. A certain number of irregular beats per minute is considered "normal" even in "normal" people. Mine does this, too.

Maybe this is can be used as another example of why we should choose our mates very, very carefully, and why marriages need to be worked on consistently from day one. And sisters, don't ever become the one who "does everything" for your man...you're asking for trouble because there will come a time when you won't be able to "do it all". I've been married for 27 years. My marriage is better now than it ever has been. It just keeps getting better and better. Part of this is due to my seeing how wonderful my husband has been since I've become sick...and I've been sick a long time now. Ofcourse, it goes both ways...during our early years, while he was building his career, I was the one who was at home taking care of a houseful of small children, largely by myself. Even then, every minute he was able to be home, he was pitching in there...largely because I let it be known early on that this is the way it would be! He didn't complain then, and he doesn't complain now. I know it's hard, but this really is a test of commitment. And commitment sometimes means that we set the stage in a way that helps to assure that someone doesn't suddenly have blinders removed, have a freak out and walk.

Find a lawyer for yourself. There are all kinds of organizations that will provide free legal council for you at this time. Do what you have to do to get what you deserve as it sounds as if your husband is rail-roading you through this.

No wax...checked for that at the ER. And yeah, there is some buzzing, but underlying the buzzing is just a huge hearing deficit. It's just GONE. Hopefully, it will come back, and hopefully, I won't wake up tomorrow morning with the hearing gone out of my other ear! Kayjay, temporary hearing loss when I'm very presync is common for me. Just like vision can tunnel and gray out, so can my hearing. This, however, is non-stop and it has nothing to do with what position I'm in, what I'm doing or anything else, seemingly. Thanks, guys, for the concern...heck, again, I'm just happy right now knowing that I don't have a big old blood clot or tumor sitting on my auditory nerve!

Ok, guys...I've had more than my fair share of weird neurological things happening to me, but today I had a new one. Woke up this morning from my morning nap (yeah, I know) and realized something was really, really off. Didn't take me long to figure out that I had lost most of the hearing in my right ear. To put it into context, if I hold up the phone to that ear, I can't even hear the dial tone, much less anyone talking. I had a really bad night last night...I wasn't doing too badly, but after chatting online with my brother for awhile, I got up to take a bath. I had to lay down on the bathroom floor quite sometime before I could even get into the tub. After I got there, I had to call my husband to help me get out and to bed. Slept all right, woke up around 6:00 when my husband got up, went to the bathroom, got a drink, came back to bed and turned the television on for awhile. Not really feeling much worse than I usually do when I first get up. Eventually, went back to sleep, woke around 10:00, and that's when I noticed. My usual orthostatic symptoms were much worse than normal...not quite as bad as last night, but worse than usual. During my nap, I had also had my constant passing out dreaming while sleeping. Half my whole head felt numb when I got up. Being the computer dork that I am, I ofcourse, got up, got online and looked up sudden hearing loss. Guess there is such a thing! Called my primary care doctor's office, was totally unimpressed when I explained and was asked if I had stuck anything in my ear and oh, yeah...they have no available appointments until next week. Was advised that I should go to some kind of urgent care facility to rule out any immediate threat. Not crazy about that notion, but my husband finally talked me into it. Waited around until later this afternoon until I FELT like getting myself around to go and went. Ofcourse, nothing obvious on exam. I explained the POTS/autonomic neuropathy, and they wanted a CT scan to rule out a tumor or stroke. No obvious tumor or blood clots, but I did manage to get an appointment for Monday with my regular doctor. Anyway, just wanted to share and ask if this had happened to anyone else. I'm still more orthostatic than usual, and all the weird little neuro tics are going full force. Here's some info that I uncovered in my search this morning: http://www.nidcd.nih.gov/health/hearing/sudden.asp

Bear with me...I'm trying to hunt some pieces down... http://care.diabetesjournals.org/content/26/11/3035.abstract http://linkinghub.elsevier.com/retrieve/pi...939475305001511

Darn. I used to have a host of articles saved that sort of put a few of these pieces together. Here's one...it's speaking of inappropriate sympathetic activation in regards to hypertension, but it's interesting: http://hyper.ahajournals.org/cgi/content/abstract/41/6/1223

Well, your reading fits the definition of orthostatic hypotension. It's just a drop of 20 or more points systolic/10 diastolic upon standing within the first few minutes. Often, those of us with POTS might have more of this kind of drop when treated with beta blockers...the beta blockers lower the heart rate that was just an attempt at compensation for the dropping blood pressure. Even without beta blockers or other meds, this will still happen to many of us. NMH is just a blood pressure that will gradually drop upon standing. It doesn't have to drop within the first couple of minutes as in the older definition of orthostatic hypotension. What's too low? That's always a question that is up for debate. Generally, too low is when you can't function well with it at that point. Generally, any systolic reading below 90 is considered to be "hypotensive", but any further than that, well, there isn't much in our medical literature providing guidelines.

I don't know, but it's something I've often wondered about. I've probably had at least mild autonomic dysfunction my entire life. I almost always managed to get diagnosed with gestational diabetes during my pregnancies. My blood sugars have remained "borderline" for the past 20 years. There have been spikes up in some readings. Is there a link? I don't know. A few years ago, a European study raised the question as to whether autonomic dysfunction might occur much earlier in the course of diabetes than had been thought or that it might even come before. I've thought about that a lot.

Sounds as if you had a crappy experience, but variant angina is another of those things that's very hard to treat. The doctor was being correct with this. Some recommend calcium channel blockers. For me, this is helped by all the other drugs I use, but I still have break through episodes. And yes...I'm still here, too. As sucky as it is, sometimes we're just going to hurt. I'm sad to have to tell you that, but maybe that's why the psychiatrist was suggested...maybe you need some help in dealing with scary things happening to you and in dealing with the health care community. Heck, I get a little crazy having to deal with them, too. There is no excuse for rudeness, but it sounds as if this doctor did tell you what would be considered true. It's doubtful you occluded. I know I recognized early on that I couldn't be in an emergency room every **** day, so over time, I did just learn to deal on my own with this. There's measures I can take that help, but it's just another part of my life.

My swallowing difficulties, as many symptoms we deal with, wax and wane. When I've been at my worst, I'm usually eating pudding. Otherwise, I have to manage my foods in very, very small bites and silly as it sounds, really think about swallowing. Funny story: this has been the way my life has been for a very, very long time. Essentially, during most of my kids' growing up years. The other day, someone pointed out that just about all of my kids eat in the same manner that I do....we make bites very small, even with sandwiches in which we pull off small bites to eat. Are they doing this because they've seen me do it? I hope this is the case and it's not because of underlying, unrecognized difficulties that they experience swallowing.

Kayjay, that was an absolutely beautiful post and there isn't much I can add. It's what I was trying to sum up above in my post on marriage. It's the difference between a boyfriend/room-mate and a partner/spouse who wants to be make a family with you. A family can be just a couple, but families make things work.

Household tasks? Well, if I've done nothing else during the day, I attempt dinner in the evening. Usually fairly simple. If I'm not feeling particularly bad, I might unload and reload the dishwasher while I'm in the kitchen. With help, I can get a load of laundry around and get it in the wash. I try to get the help in carrying it down to the basement and then bringing it back up once it's dry. Since I have kids, most of my energy has to be saved for them. They aren't small children any longer...the youngest is 14. However, two are still in school, and up until this summer, three were. So, during the school year, my entire day is getting up with them to make sure they get out the door, and managing to make sure that they get home in the afternoon. I'm so exhausted from the morning that I usually go back to bed until around noon, and then, well, within a couple of hours, I have to be up to seeing them get home. And then there's dinner and maybe a load of laundry. That's pretty much my day.