morgan617

There are some meds (nitro comes to mind) that really do expire, so just ask your pharmacist. it's usually the best way to go. morgan

I agree that sometimes once we get a diagnosis, no one looks at anything else. it took a looong time after my POTS dx to for them to realize it wasn't the only thing I had that made me feel or be seriously ill. If you have anything new or that becomes much worse, you should never assume, it's just another symptom of POTS and get it checked out. Be as persisitent as you need to be. morgan

I am almost completely home bound at this point, but I do have other issues. morgan

Sorry earth mother, didn't see your post, still a duh from surgery... It's diagnosed by an ear nose and throat doc. You have a test where they put little probes in your ears in a very quiet darker room, and playing tones. it measures some connection between your eye movements and ear responses. Your eyes have a great deal to do with inner ear disorders. They also do EMG's, in which you are tested with a series of lights, and water in your ears. it's a pretty barbaric test, but gives them a lot of info. You can have a hearing loss type or a vestibular type, where you don't really get the hearing loss, but the attacks can be a bit worse. usually, the deafer you get, the less you get attacks. It's hard to know which you'd rather have. It's very common to get a great deal of fullness or pressure with meneire's and tinnitus, or ringing in the ears is very common. It can be anywhere from high pitched, to low and roaring. I have it 24/7 and have for many many years. There's also labrynthitis (sp) which is viral, mimics meneire's and lasts around 6-8 weeks. Then it spontaneously goes away. Miserable while it's there though. Hope that helps...morgan

Hi Alicia, I have bilateral meneire's and it's just awful. I have actually never been able to close my eyes. I have absolutely no sense of direction, complete disorientation and just keep my head in or near a bucket. I have no idea if my autonomic problems are made worse, as I really am convinced I couldn't feel any worse. I have nystagmus all the time now, not just during attacks. When I have one, I have to sit straight up and stare at one spot on a blank wall until it passes. I can't even move my eyes, let alone the rest of my body. However, once in awhile I develop BPPV, which is a different disorder (good grief) and certain exercises help with that. You may want to check and see if your symptoms are a bit different due to that as opposed to meneire's. The treatment is very easy if you get a good therapist (not fun, but easy, and takes me about 3 visits) Good luck, I definitely feel your pain! morgan

Hi All...Just a short little note. I am home. I had absolutely great care from everyone but the surgeon...good thing my primary was there for me! The surgeon said my gb was so packed with stones another one wouldn't have fit, he'd never seen one so full apparently. I found out from a nurse friend, when you have stones they are harder to remove. So when I woke up in recovery, after barfing my head off, I felt to see how things were and felt a lump the size of a softball. I called the nurse and she immediately called the doctor, he had nicked something, or not stitched something, Lord only knows. Anyway, a lot of blood in the abdomen. It stopped on it's own, then I couldn't pee, and he got mad because people don't have to pee after an hour in recovery, and they cathed me got over 600 cc's. My capacity is known to be 125 from cystoscopies. Felt better after that. The sureon didn't order any potassium for me, said to watch my calcium....good grief, but Dan the man loaded me way up after the surgeon discharged me and wouldn't let me go till my levels were ok. First thing I did after I got home was pee blood and get a cold sore from where the tape was stuck to my lip for the intubation. Called Dan, got antibiotics, got cold sore ointment, got anti diarrheals and now am just waiting for this humongous bruise to clear up and give me a bit more space in my insides. Am doing ok, am glad it's over, but wish it was a bout a week from now! Thanks everyone for your good thoughts! I am doing about like I expected, no real pain except from the things that went wrong! Par..... Thanks for the letting people know Ernie! morgan

Well, big day tomorrow. I have a different/another disorder too that causes some major problems with the breathing center. I'm getting my gall bladder out finally. Talk about waiting forever. Anyway, high probability of getting stuck on a vent. Dave has instructions to write a small note and let you know that didn't happen, but I'll be writing and cranky as ever by Monday, so I will write too. Just wanted to thank everyone for their thoughts and prayers when this all started waaaaay back in May. See you on the other side of this, when I am feeling so much better! morgan

Thankful, a burning tongue is a hallmark sign for B12 deficiency. You might ask your doctor to do a blood level, quick and easy. I have no idea about the skin part, but the tongue part definitely is. And it's easy to fix. I constantly feel like I'm on the "verge" of coming down with something, but it almost never blooms. My parotids swell too. Common in CFIDS. Also Sjogren's, which is an autoimmune disorder that causes very dry eyes, mouth nose, anything orifice and can cause parotids and other oral glands to swell and be uncomfortable. I've actually had to get my tear ducts seared shut to try and retain fluids in my eyes. I think it's part of the problem with the sore throats. I am always sipping on something, all day long, but wake up with sore throats, so guess it's a combo of burning lava acid reflux and sjogren's. Ain't life grand sometimes! morgan

There's nothing wrong with supplements, as a rule, but please make sure you ok these types of things with your doctor. Licorice can cause heart irregularities and low potassium in some people. And muscle fatigue and weakness, which is what your problem is to begin with. The recommended dose of Thiamine is 1-1.2 mg a day. Too much can also cause fatigue and muscle weakness, etc. I'm certainly not advising against the use of alternative drugs, just suggesting you run it by your doctor first. There are some things out there that interact with others. I am about as exercise intolerant as you can get, but if I took licorice, it would probably kill me, as I have problems retaining potassium and it is notorius for depleting it. Many on here run low to bordrline, so it may not be your best choice for energy. I'm just recommending that people get levels done before taking large doses of anything, whether it's a supplement or a medication. Everything has the potential of side effects, including vitamins and herbs. What works really well for some, might cause severe consequences in someone else. People on here just state what works and doesn't work for them, so take it as food for thought, and discuss it with your doctor. Little lecture over, and I am glad for those of you that have found things that do work. My doctor actually askes me if I've gotten any good info off my forums when I go see him. I realize we don't all have doctors like this, and for a very long time, he was not this open. I've gone to him for 26 years and this has occurred in the last 6-7 or so. But I also know he is looking out for me. And I know the desperation of just wanting something, anything to work...so just be careful. mamamorgan

No, but I'd sure like one for my whole body right now! How is your baby, Lois? I still miss my Chloe every day.... I hope your back improves very quickly and you have no residual....morgan

Very nice! Thanks for sharing...morgan

Lois, I used to be a big quilter and just can't anymore, breaks my heart. Crochet kills my shoulder, but I am teaching myself to knit (with the guide of a dvd) and practice all the time. It doesn't seem to bother my shoulder as much. I would love to do it, if i could get more info. I'd love to quilt too, if it doesn't involve bending over the machine. morgan

Do you get a lot of heartburn? Reflux can cause sore throats and inflame the larnyx. I have these kinds of problems quite often and even get hoarse quite a bit. I can wake up with a sore throat almost every morning. I'm supposed to be taking protonix, but it bothers me, so I sort of just live with it until it gets too bad. An ear nose and throat can tell right away by peeking down your throat, a bit gaggy, but very telling. People seldom consider they can reflux right up into their vocals cords and it's acid going up there, so can cause the inflammation and swelling, which could explain the sense of difficulty breathing. Just a thought, it's actually pretty common. morgan

firewatcher, Those kinds of horror stories I can handle! Firewoman, wow keeping you two straight is fun! NO problemo, I thought I had mentioned when the surgery was, but guess not. My friend with polyps has them in a bunch of places but they have always been benign. I'm keeping positive thoughts for you! morgan

firewatcher, Those kinds of horror stories I can handle!

I do whatever works, with my doctor's blessing, he says I'm the only one that knows how I feel. The one exception would be my potassium, but I take a huge amount, so if I go up on it, I just need to go in and get my level drawn a couple days after I up it or lower it. But even that is a prn, so I don't need to call and let them know, they just get a lab with a note on it. morgan

Hi and welcome...and not to be political, but many thanks to your husband and you for keeping us safe and being true heroes, your sacrifices do not go un-noticed... As far as salt, I think if you've reached a balance where you are doing ok, or at least functional it doesn't matter how much you use. Some people can use a ton and some none at all (me). If your BP and pulse are at a place where your butt gets up in the morning and you can do the things you need to, then I would guess you are getting enough and don't need sea salt laxatives..... which tend to cause symptoms. It's different for everyone, and I believe sea salt is actually stronger than regular salt...I may be mistaken, I am definitely not a salt expert. It sounds like you are getting plenty with a BP of 110/60. I have never really heard of any set amount people should take, only how much over they shouldn't go. My husband and son have really low BP's and have been told they can eat all they want, but they seldom add salt to anything, most processed foods out there have plenty. I have a much harder time finding low salt foods than high salt stuff. If it ain't broke, it don't need fixin....sounds like you are fixed for now. morgan

Some people here have tried provigil with some success. it is supposed to be non habit forming and doesn't have the peaks and valleys of Ritalin. Trust me on this one, Ritalin has big peaks and valleys, my husband takes it for narcolepsy. Also if you have a fast heart rate, you will have a hard time getting it, it can increase it. Dave has to get an EKG every six months because he is on it, so it's probably contraindicated for you. My son's friend takes concerta and does well on that. it did decrease his appetite for a bit, but he got over that. I don't have any personal experience with either, except they did try my hubby on provigil. It wasn't for him. Good luck with finding something, I'd sure like to have less fatigue too! morgan

Suzy, right now I can so relate. Mine isn't OI, but it sure isn't helping things. We all get so overwhelmed at times, we wish we could just be whelmed as opposed to under or over. It's funny, not haha funny, how when you are chubby, you must be healthy, when you are skinny, gee you look great. You can't win. I tell people these aren't diets I recommend to anyone! Do any of the oldies remember the t-shirts? "But you look so good", etc? I still wear one in particular when I am unhappy with a doctor, but I digress. I am sorry you are going through such a rough patch. I carry a little bucket with me everywhere now, what fun. It hits out of the blue, so I am stuck at home. Mortifying to hurl in a public place. I do hope this is a bump as opposed to a mountain for you. A good whine is good for the soul.....morgan

OH MAN, I declare you the winner!!!! Mine is July 16th. Forever away. You will be all recovered and can be telling me how smoothly everything went. For the rest of you guys This is a no horror stories zone till the two of us are done!!!! I assume you will be inpatient? My problem is not surgery, I have that other health issue, not related to OI that is the concern for them, but I expect since they are all prepared and actually believe me, I will wake up, say feed me and send me home, and they will force me to stay overnight. Many people do stay over still, although a few go home same day. So I will be anxiously awaiting to hear how great you are doing! My old man was back at work in a week, so I am expecting just a bit longer to be at my baseline. I have a friend with a big polyp in hers too, but they keep telling her it's "rib" pain. Do you have polyps anywhere else? Some folks are kind of prone to them. I'll be thinking good thoughts for you! Good thing I'm a good sport...lol. justasittinhereandwaitinmorgan

Shoe, It's amazing the things can thrill dorky men isn't it?? LOL I've had lumbar punctures. Never had any problem, they should let you lie there for about an hour or so after. It wasn't painful and I never got a headache at all. It has actually turned out to be one of the easier tests I've ever had. Good luck and it sounds like you've got a winner doctor! Even if he's a dork! morgan

Maxine, if it makes you feel any better, radiologists are required by law to call the doctor that ordered any test that appears suspicious within 24 hours. Even pap smears that are "suspicious" are called straight to the doctor, before they ever get the written report. Breast lumps that looked suspicious were called to our office within hours. I think every family has cancer in it, it's either the leading or second leading cause of death, so there's a lot of it floating around out there. I had an uncle that died one week after his diagnosis of colon cancer. Every single member of both sides of my family that have died, have died of cancer, except my mom and one aunt. 90% of them were GI cancers. I get regular check ups and scopes, as does my husband, whose dad died of esoph cancer at 54, as do our sons. That's the best we can do. I have no idea why they caught your mom's so late, sometimes they can just be so aggressive, it's unbelievable. That's what happened to my father in law and my uncle. I have had interstitial stuff on my x rays for a really long time. I have to get x rays, as I had a false positive on a TB test in my twenties, but once you react to the test, you can't have it any more. So x rays were required for jobs I got. I had stuff in my 30's and it's not progressed. I know every new thing seems like another nightmare to deal with, but if they haven't changed your appointment from July, I wouldn't be overly concerned at this point. You know I've had my share of crummy times with doctors, as have most of us, but the report said mild and this has been going on for 3 years, so cancer seems pretty unlikely. My mom had sudden cardiac death at 45, after an appointment that day with a cardiologist, who told her she was just a worry wart, women don't have heart disease. So I do understand your concern, but all this anxiety isn't going to help your overall health problems. I would just assume it was the least of my problems until I heard differently. I have runs of vtach all the time, documented on my pacer, but I realized it doesn't do any good to go nuts worrying about something that may or may not happen. I don't tolerate the meds that might help them, so there's not a lot to be done. And worry and stress only increase it. It does get easy to always assume the worst case scenerio (I am grateful for the internet, but I don't always think it's the best thing in the world info wise, just enough to scare you spitless) but at some point we have to just take a big breath and relax a bit. If you can't trust ANY doctor, you will never stop being anxious. It's like your EDS, I know nothing about this illness, but you have been to a boatload of doctors and gotten a lot of opinions regarding this. Of all of them, have you found one your gut said was ok? If you have, then just stick with him or her. The more you see, the muddier the waters get. And the more you question, because different doctors do have different ways of viewing things. Can stuff go wrong? Oh yeah. But it can also go right! Most doctors go with how they were taught, and it doesn't mean they are wrong, just think in different ways. Some will go far outside their comfort zone and others won't. But at some point you've got to trust someone! Or this viscious anxiety you have will never end. I trust my pcp, I trust the surgeon he picked, because I trust him, I trust the anesthiologist, because he was picked by a doctor trusted by a doctor I trust. Can things go wrong? Of course. But I am not assuming they will. I am assuming, because they know about me, things will go smoothly. If they don't, they weren't meant to. Sometimes you just have to trust that some doctor out there knows what he's doing. What happened with your mom and brother is a tragedy, to be sure, but we have all been touched by these kinds of things. I know you are scared, but I sometimes believe your terror impedes your chances to feel better. Like a deer in the head lights, we get frozen by it and then do nothing. Throw stuff, get angry that yet one more thing has been found, and then adapt as we always do. Chronic illnesses are not for sissies, so I know you are stronger than you think you are. If you aren't having trouble breathing, if the pulmonologist has your films and thinks it's not urgent, then assume it's not. Sometimes I feel like that's easy to say about my gall bladder, they aren't the ones in pain, but it hasn't killed me yet, so I will wait for July 16 and assume all will go as planned. Scared, sure, but also trusting that my doctor has all the bases covered. If you don't have a doctor like that, then you need to find one, but remember, it's like waiting for the right time to have a baby, if you can always find a reason for it not being the right time, you will be 60 and childless before you know it. I hope things go well, and really hope you are not offended by the lecture mode this sounds like, or may be, since I seem to have become more outspoken in recent years. I never intend to hurt feelings, ever, but remember, what is written on a computer does not always convey what the feelings behind it are. Let us know what the doctor says. Oh btw, it is the job of the radiologist to get the reports out and the job of your doctor to get any other reports, films, etc to the specialist. However, I have been known to go pick up the films myself, just to be on the safe side. The specialist should have the info on his desk by the time of your appointment, but since he has already stated it's not urgent, he has probably looked at them already. If you want him to explain it all to you, make sure the films have been picked up and/or take them with you. many doctors will look at films while they are in the hospital making rounds and so have actually seen them, without them having been physically in their office. Call a couple days in advance and verify that the pulmonologist has everything, then you will know for sure. Good luck, morgan

Actually yes, it's not that uncommon. I have the same thing, with hair on parts of my legs, but not others and realize that the hair just gets rubbed off. Many people who wear high cowboy boots will rub the hair off from the boots constantly rubbing against skin. Just my two cents, but it is weird, I can see where I sit and how my pants rub a certain part of my legs that are totally bald. My hair on my head and legs is very fine and therefore just rubs off easily, which is good since I barely ever shave them! . Saves on razors! LOL morgan

To me this sounds a bit like a control issue. Your life has spun out of control through no fault of yours, and you want to regain some of that back. The problem is, you are still having significant enough problems to require rather signifificant help. This illness is very frustrating and we all want our old lives back, or at least when we were at our best, for those of us who've been sick forever. But this has to be a bit of a give and take. There are many on this forum who would give anything to have overprotective family members as opposed to the complete lack of support they are getting. It sounds as though everything has to be on your terms, with no one who is caring for you having the right to have any input except yours. You even admit you want to do this or that, but you need help with it. Sorry to be so blunt, but this is not just affecting you, you have people sacrificing for you and you are taking out your anger and frustations on them, not the illness that got you here. It is not their fault you are sick either. When they show their concern, you get angry at them? After awhile that desire to help you will wan, I can assure you, if you choose to continue to get angry because they care about your safety. I have broken bones and gotten concussions from my thinking I was just fine when actually my perceptions were way off because I wasn't fine. I then have a very guilt ridden and frustrated husband and son because they feel they allowed it to happen. When I was just wanting to control things. I know this sounds harsh, but you asked and that's my opinion. I very much understand the desire to have a little control over our lives, I have been sick a very long time now, but I also know, when you have people that are willing to do anything to help you, you shouldn't be kicking that gift horse. With all the involvement your family has agreed to, you are hopefully also letting them know how much you appreciate all they do, as opposed to just the resentment I hear in your post about all that they do. I would recommend you sit down with all involved in your care and have a talk and set up a plan of action, for how you can regain some independence without scaring the bejeebers out of them and getting frustrated and angry with them or they with you. Maybe they aren't feeling appreciated for what they are doing to help you. This illness affects everyone involved, not just you. Your mom loves you and wants to protect you, that's how moms are, as you know. You can set up a means of walking, or being more independent, but with a way of contacting them if you need them. Right now it seems to be, I will do what I want, when I want, and you guys will just jump when I say jump. maybe when you are feeling up to a walk, someone can go with you, at least for the walking part, then leave you with a cell phone and come get you when you are ready to go home. Then you can start taking short walks on your own and work up to more stuff. There has to be some sort of compromise that will be acceptable to everyone. Rather than getting upset with them for being worried or them getting impatient at what they perceive as your lack of consideration, by taking off on your own, you can work out a non confrontational way of becoming better and them seeing you are improving. It sounds as though a family counselor might be in order, someone who is objective and can help all of you come up with a workable plan, where no feels quite so frustrated or angry. Family can just be too close to communicate and an outside source can help everyone put things in perspective. This is not meant to be hurtful to you, but as a person who lost all her control quite awhile ago and has had occasion to see that how lucky she has been compared to many others, it is said with the knowledge of "having been there" and reaching a point of realization that I was actually driving the people who really cared away with my anger and frustrations, not realizing they had their own set of frustrations. They have lost many things too in this. This has to be a give and take and shared control of things and if that requires outside help, then so be it. Good luck with this, it just gets very complex and and can become very difficult if they give up and then you need them. it has to be on terms that work for everyone, not just you. I wish you luck with this and hope that you can work this out with your family in a way that is good for all. morgan

Yes supine hypertension. I think I am just so sensitive to meds that I don't need much to affect me. Like benzos, I suppose. I take 25 mg of atenolol 3 times a day. This is not considered a big dose at all. I wonder some days now if I am developing vagotonia. They decided it was baro reflex, because I just fit all the criteria for it in the literature. When I had my TTT, I was high BP while lying there and when they put me up, my BP shot sky high along with my pulse. It never dropped, just went higher and higher. I was not a fainter, just felt like every drop of blood in my body was in my chest, neck, and head. They had to put me down because she thought I was going to stroke, but even after lying for 1/2 hour my BP was 180/100 or so. There is also literature by Dr. Robertson and it is recommended that people with baro reflex take valium, and clonidine. I just don't tolerate the clonidine and I take about one tenth of the dose of valium they suggest. About 6 months before I started on atenolol, I started having really brief syncopal episodes, as soon as I hit the ground I was coming around and I didn't turn pale or get clammy. Just had no warning at all. I felt like i was having some kind of arrythmias, but was pretty much ignored. Then one day, i just kept doing it all day and my husband finally took me to the ER. They saw I was having about 7 second pauses. I had a pacer inserted a week or so later. I was having rates of 130 that would drop to 25 in a couple of beats, so I would drop and it would kick back up from hitting the ground. Atenolol is the only med I have ever tolerated as far as betas or any other cardiac meds, but they are notorius for slowing heart rate and here I was having these pauses. And then my BP started dumping too. So I got a pacer and then they started me on the atenolol (sorry, I had been on it for a few years when my BP first started going up, but had been off it for about 2) so the atenolol keeps my rate down, but exacerbates my slow rates, so I got a pacer to prevent that, because I needed something for my BP. Now my BP falls to these weird very low levels, usually when I am sitting or standing. When I am lying, it shoots back up. Then out of the blue, it surges up sky high. It's crazy, so I don't think of myself as a good test subject for meds and BP's. By the way, my doctor is convinced an ablation I had in 2003 caused the problems with the low heart rate, but I have no idea about why anything happens with my body. It's still high when I lie down, can drop a lot when I get up or go up, I really never know what it's going to do. Are you totally confused yet???? LOL morgan