morgan617

Earth Angel, You are right on point, however! I also believe we often just exchange one thing for another. Even with my OCD, if I can rid myself of one compulsion or obsessive thought, there's always something new in the corner just waiting to pop out and replace it. My hands are awful, by the way. They will often bleed from washing them so often. When I was younger (have had it all my life too, but never told anyone till my 30's, it's one of those mental health things where you know YOU have the problem, not everyone else) I would literally leave the soap on and scrub until it, the soap, had absorbed into my skin, like lotion! A great example of exchanging to me is an ex smoker, they can be belligerent about people telling them to stop, but if they do, can easily become worse zealots than those who have never smoked. Although addiction is far different from OCD also. I agree it is all about control too. Even with my OCD, I do other things to prove I can control something, but trust me, my OCD has all the control in this case. I remember watching an Oprah show about people with "OCD", who were cured in a weekend by being coerced into doing the things that were the most repulsive to them. I remember watching that and thinking, man this is the blind leading the blind, these are phobias, and have absolutely nothing to do with OCD. How absolutely misleading, they had no idea. It's like saying all cancers are the same. Who here believes that? These were people afraid of one thing. OCD has has no bounds on the stressors you can have that you want to wash away. I found it to be very much like many doctors appts I've had. Tunneled and totally incorrect. (speaking of meandering) Information is power.....morgan

Welcome shoe, You have a lot of stuff going on. 02 sats of 85% are certainly not normal and the fact that you have to sleep on a wedge to breathe is disconcerting. I am assuming you've had an echocardiogram to decide if you do, in fact, have MVP. There are people who can have intermittant (sp, sorry) prolapse, but they should be able to see something on an echo. Mvp can cause tachycardia and if no one is sure, an echo is certainly an easy way to find out once and for all. My lower legs and hands also turn purple when left dangling for any reason, they also get cold and dead white, then suffuse with blood and turn beet red and burn like fire. Either neuropathy or erythemaglia (again with the spelling) Did you lose the weight on purpose? I have problems with voiding and have had hematuria for over 25 years, no cause ever found, a bit of interstitial cystitis which comes and goes, but always the blood. But nothing major. It can be an indication of renal disease however, so hopefully they have checked that out. I tend to go very tiny amounts, unless I paralyze (a whole other illness I won't go into here) and will have spasms and squirt after voiding, as opposed to stress incontinence. I feel like I constantly have to go. If you are voiding a lot more than you are taking in, it will leave you dry and tachy, as dehydration does. People with OI problems tend to have lower than normal blood volumes, regardless of how much they drink or take in, so if you have that plus are voiding more than drinking, it can wreak havoc on your system. I have no idea about your leg pains. mine are like that, but also due to the other illness and realted to potassium levels. Potassium relieves the pain. Potassium should never be taken unless under a doctor's supervision however. Those over the counter supplements are pretty scary to me for that reason. I hope you get some answers soon. People with autonomic dysfunction can have many varied symptoms, so it's a hard one to sort out and sometimes doctors get stuck on one thing, or on nothing (as in, it's all in your head) so just keep chipping away. This site has many resources and you can now google a lot of stuff too. Good luck in your search for answers! morgan I don't believe you commented on your BP, or maybe I have forgotten, but it seems you only talked about your pulse. Not a good day for me, obviously.

I do have clinical OCD and checking stuff has nothing to do with thinking you have "forgotten" anything. Checking things relieves the stress caused by the obssesive thinking about needing to check everything over and over, not because you actually think you might have left the stove on or whatever. In OCD, the brain thinks "what if I left it on?" even though you KNOW you didn't. A person with true OCD would actually not forget stuff, because they are too obsessed to forget the keys or leave the burner on, or a guitar somewhere. Huge difference between forgetful and ocd. You can tell your friends. Dave has always been very forgetful, so I sent him to a doctor and he told him he didn't exercise his brain enough and it's a "guy" thing. LOL, first time I ever heard a guy doc talk about blonde syndrome in another guy. In my brain freezes, I just don't even think about stuff, it's actually over ridden my ocd, and that's something, let me tell you. You can ask your doctor about it, but I'd chalk it up to fog, there's not a lot they can do about it. Dave doesn't forget the things important to him, just everyone else. So who knows, and if the house burned down he would never think, he should have checked to see if he left the burner on. He's lazy, you're sensitive to the fact that you are forgetful, and I have ocd. morgan

I've been on benzos daily for about 17 years now and never developed a tolerance. I take the same amount or less than when I started, which is a pretty small dose. I take valium, which has a very long half life and I take 1 mg a few times a day. They started it after they realized the usual med given for the inner ear disorder I have was literally killing me. I found it also helps with my OI, so it does 2 different things for me. There is a huge stigma with benzos, but every med has it's place, just about anything can be abused. The dose I take had to be in liquid form in the hospital, because it's a pediatric dose. It still makes me sleepy after all these years. If I had to go off it, I would have withdrawals, but only because I've been on it so long. I couldn't just stop my atenolol either and it's also a small dose. With no stigma. Used in moderation, these drugs can be very helpful, and my doctor has stated taking this drug is the least of my problems, and I agree. Others won't, because of the type of drug it is. The only thing you can do is try it and see what happens. It has a very short half life, which may be why some people have problems with it. On the positive side, it has a very short half life, if you don't like it.... Every med has it's place and not every med is for everyone, but I say if it helps, when so few things do, I'm not going to complain about it....good luck! morgan p.s. I had a very similar thing happen to me many years ago, that doctor "retired" soon after that incident. It's appalling, and my reasoning is they are sociopaths and sociopaths come in all walks of life. Hopefully he will be jailed as many doctors can just move to another state and take up where they left off. They have been trying to get rules into place for a long time with this, but it's everywhere, teachers, ministers, dentists, you name it. My state has a place you can look anyone in the health care field up and see if they've had disciplinary actions taken, but it's incredibly obscure and hard to find and only pertains to your state. It's pretty pathetic. I am sorry this happened to you and the others. Many years ago I turned a doctor in to the state and he got to go a seminar he had to pay for. That's it. But it was a year and a half of pure hello for me. I'm glad this is a police thing, as opposed to a state peer review thing. It would never go anywhere.... morgan

I used to get really really hypertensive. 230/120, whether lying or standing. I've been on atenolol for 3 years or so and my bp will be anywhere from 90/50 to 160/100. Depends on how I am feeling overall. I have always had a hypertensive type OI, as opposed to hypotensive, always confusing tp people doing orthostatic tests on me. I'm really not sure what's up with my BP at this point, it hasn't been this low since my early 20's, but then out of the blue it will sky rocket. The atenolol at least helps with those awful surges i get when it shoots up. And yes, I did get more hyper tensive when I laid down. My doctor has diagnosed me with baro reflex type OI. But who knows, I don't care, at least he believes it! morgan p.s. I know absolutely nothing about midrodine as my BP was always too high to even consider it....

You can call your insurance directly and they will tell you if they will cover it or not, and most places that sell these things usually know. My insurance is really bad for this kind of stuff and I actually have what's considered good insurance. I am positive they will not cover cover the shoes, no matter who it is. The shoes are not sold in durable equipment stores as far as i know, and just about anything not sold in durable med equp stores isn't going to be covered. Unfortunate, as it it could save them money, but that doesn't seem to be what they about quite often. morgan

I'm not certain ACE inhibitors slow the heart rate like betas do. I hate the side effects of my beta, but I hate the racing heart more, so just deal with the fatigue and stuff. One thing about ACE inhibitors, they can cause a chronic dry cough that is really annoying. I've tried just about everything out there, but until you try stuff, you just don't know. What one person finds to be a God send, another finds a nightmare. It's all trial and error and even then, sometimes you think you've got it all right and it stops working. This stuff is like a virus, you think you've got it figured out and it mutates on you. morgan

You can have a chronic sinusitis that doesn't cause runny nose or anything but can cause fatigue, feeling run down, ear and cheek pain, but you'd never think of sinus stuff. The problem with sinus infections is that they are way undertreated, they require a long (up to a month) course of antibiotics, or they feel better, but just simmer and smoulder in there, making you feel crummy. 4 days is pathetic for any type of infection, let alone sinus. You can request an x ray, or better a CT scan of your sinus to see. Most ear nose and throat docs have CT machines in their offices anymore. This happened to me about 12 years ago and i never would have thought sinus, but there it was. I was on ceftin for 21 days along with 3 nasal sprays, but it cleared it up and I haven't ever had it again. Also Neti pots are the new thing and I actually think they do help. And trust me, I am so not into non traditional stuff, I was steeped in traditional medicine for over 30 years. Good luck sweetie, morgan

I tried clonidine, I got the patch, but had an allergic reaction to the adhesive. The patches are actually better, as they give a more even distribution, no peaks and valleys. It ended up not helping me either with the patch or the pill, but it didn't hurt me either, except for the rash I had for 6 weeks! It's given very frequently for congestive heart failure, so often given to people who have lower blood pressures due to the heart pumping poorly. It doesn't have a big affect on bp is what I'm trying to say. This is probably not a good day for me to try and explain things from looking at my posts. I have no idea why someone would want to give you a stimulant when you feel over stimulated already. I find that a bit weird, and it sounds like a bit of arrogance in there also, sorry, but that's what I hear. he is listening to himself but not you, so you have to listen to you....good luck, whatever you decide sweetie...morgan

I tried Niacin once many years ago, once being the operative word here. I don't have MCAD, don't even understand it. If you are prone to flushing already, I would guess it could easily make it worse, but I'm not sure it would affect the MCAD itself. The flushing from Niacin does stop after a bit. If it's been recommended, I'd just start at a very low dose and see what happens. If they know you have MCAD and are ok with you taking it, it's a question of how brave you want to be...I'm a huge weenie with meds. An example of it not making things worse is, my liver enzymes are high because of my gall bladder, however I can still use tylenol, because the mechanism causing the enzyme problem is inflammation, not a liver disease per se. I hope that makes sense. So the Niacin may cause the flushing, but not because of the MCAD. I'd better stop, I am confusing myself here...good luck sweetie, morgan

Man, I wish I could drink coffee! Just can't tolerate it at all, inner ear and cardiac. I am jealous! morgan

This is a major shot in the dark, but if it's a hormone, it may cortisol, which is produced by the adrenals. There are many endocrine problems that certainly reproduce or cause autonomic symptoms. It's a bit annoying that he calls to tell you there's something wrong, then doesn't get you in for 2 weeks. You can always tell the really healthy people who haven't had to wait around to find out why they feel so crummy. You might look up endocrine or adrenal disorders and see if soemthing fits. Like gitelman's or Barrter's syndromes. The two are similar but different, in that one raises bp and one causes low bp. But both can certainly cause OI symptoms. It's the hormone connection that catches my eye. Please keep us informed as to what is going on. I think there are many things out there that cause autonomic dysfunction, not the other way around. Good luck sweetie! morgan http://www.endocrine.niddk.nih.gov/pubs/addison/addison.htm does this sound like you???

Linda, do you have diabetes? If you need the steroids they shouldn't be messing with your sugars like this. I mean steroids mess with sugars, but I would think if the dosage was right, your sugars would actually be in better control. I get the surge type things you are talking about without steroids, but not the flashing stuff. I have no idea. I do know that sometimes your body kind of adapts to things that are wrong with it and you can actually get symptoms from things getting better. It's like starting a bp med, your body has gotten used to hypertension, so you are light headed and feel gross when your bp drops to normal, because to your body it feels too low. I was put on steroids and started at 60, talk about feeling like poo. I thought I was going to explode or implode. I'm sorry I can't help you but I'd have to think it is from the disease or the drugs. I hope they can figure it out. morgan

Many times if I am just sitting, like on a step outside, my whole body will move with my heartbeat. it's very annoying, but not scary anymore. You will be very surprised at the things you will get used to! morgan

Welcome, but sorry you have to be here. I have had this stuff for my whole life, not caused by a virus or anything. The good news is, many people who get this from a virus or trauma seem to recover better than those of us seemingly born with it. It just can really vary from day to day and person to person, which just makes it more frustrating. About the work thing. I worked all my life and I'm up there (54) and realized I just kept having to cut back, but couldn't figure out why. There was really no such thing as POTS when i was young, so it has come a long way. I did work until 2003 though. And had two kids. Rama is right, the treatment can vary as much as the symptoms, unfotunately it is a trial and error thing. Wellbutrin would not be my drug of choice, I was a nurse for a long time and many people complained of anxiety and stopped it. it was first used to help people stop smoking. However, there are people that swear by it. the most important thing is, people with pots seem to have a big sensitivity to drugs, so always start with very low doses and don't let doctors bully you about this. I take peds doses of almost all my meds. And do just fine. It's important to have a doctor that is open to new things. it helps if he/she is well versed in pots, but good luck there. I find it's more important that they listen and are open to info you get for them or they can get. And that they are flexible. This is a very difficult disorder to deal with and it takes a lot of inner strength and determination to deal with it. You will find many strong and caring people on this site, who will totally get everything you say. Baby steps and trial and error. It's good to go to the archives, you will find a lot of info there too. just go to the bottom of this page and see the numbers on the bottom? Or you can type in a word and the posts with that word will pop up. You will probably find info about others experience with wellbutrin. My only experience was on the other side of it. Good luck and again welcome! morgan

Sorry, last post on this. My sister will not leave me alone. She is paying the out of pocket and I am rescheduling tomorrow. Will let you know how it goes. Thanks all for your support....morgan

I just wanted you to know I've had arrythmias for 30 years now. I think for most of us, everytime some new symptom comes along, we tend to get a bit obsessed about it. I had a thing with my bp and listening to my heart with my stethescope. Since I had been a cardiac nurse, i figured if I listened every five seconds I would figure out what was wrong. I am guessing this is a phase and as some time goes by you will feel this need to check your pulse less often. We just kind of start coping and dealing with with stuff and it becomes less anxiety provoking. I don't worry about stuff I get used to, but when i get a new symptom, I have to learn to adjust to that too. If people ask you, you can just say your neck hurts and rub around it (not on the carotid where you are checking , it can affect your pulse to do that) or you can just tell them you have an irregular heart rate and you are feeling it. Or you can ask them a really personal question and shut them up. This will pass as you realize it's probably benign and you get used to them. I have them sometimes all day long. My guess is (only a guess) you are having a beat that's too early, so it hasn't had time to fill with the normal amount of blood, then the heart resets itself and over fills, because of the tiny pause and it takes more force to push more blood out. So you are not actually feeling the wrong beat, you are feeling the beat that's fixing things. Everyone in the world has these beats, everyone. It's just not everyone feels them. The heart can't beat a bazillion times in your life and never have any irregularities. Many people find they have 100's of them and it's only by accident, on some other test. They just don't feel them and don't have any symptoms from them. The pounding comes from the heart thinking something has frightened it. Or thinks it's exercising when it's not. That's my least favorite feeling. It's called hyperandrenergic reactions. Our hearts just do it whenever they want as opposed to appropriate times. I hope this helps a little. The pounding does go away, because you only have so much adrenaline at a time to keep it pounding, so it will stop. Good luck, and this shall pass, and hopefully nothing new to crop up and take it's place! Most of us have obseesed, so don't fret about it. morgan

Sorry guys, I thought this thread had disappeared awhile ago and haven't been on to see that it's still here. Thanks firewoman. The bankruptcy went ok, I guess, really don't need to discuss that except that I can't get the surgery because of it. When I got my pacer, I was never charged anything. I assumed it was because I was an inpatient, so my medicare picked up the balance after Dave's insurance. Not so, as it turns out. We had just met our 4000 a year out of pocket catastrophic and all was paid by Dave's insurance. medicare has not paid one red cent for anything I have had in the 6 years I've had it. So, I had my surgery scheduled for yesterday. It should be done. But I found out this other stuff last week and had to cancel, because they want the money up front. Well if we had thousands to spare, our credit wouldn't be bad, now would it. So, I am patiently waiting for it to rupture, or cause liver or pancreatic failure. No one has even retested my liver enzymes since this all began. That's where I am. A dark place, the one time I have something they can do something about, they won't because of money. Lois, post chole syndrome is a problem a fair number of people have after having their gall bladders removed. Since there's no storage for the bile anymore, it tends to release much faster into the system. it can cause diarrhea and sometimes you get a mimic of the pain you had before the surgery. You can get spasms in your bile duct or it could just be damaged from having the bad gb to begin with. These symptoms will almost always clear up, but for some people it can take up to a year or so. It tends to be more of an annoyance than like what you feel with the really bad gb, but it is bothersome. Dave had diarrhea for about 4 months, but it was food related, and a friend did go about a year, but both still say they wouldn't go back and not do it again, it's still far better than having the thing in there. They do have some meds that really help quite a bit with these problems if you have them. They are far more careful about making sure you have no stones or grains left to cause problems afterwards. As far as post chole pain goes. The biggest thing is the loose stools, which of course, if you have pots, sure doesn't help. Anyway, I just want to thank everyone for their kind thoughts, and I am such an eeyore right now, it's just better for me not to be posting. I am unable to take my potassium like I should due to nausea and that's not helping things at all either. Firewoman, I hope they get to the bottom of things for you and you win the bet. So you can feel better soon. Thanks again everyone...morgan

I'm so sorry tea, it's the story of my life and so embarrassing at this point to ever admit I worked in nursing. But I can assure you, I never treated anyone with the massive lack of respect I see as a patient these days. I have lost a pound a day since my gall bladder attack and even with two talks to pcp office and one to surgeon, absolutely no replies yet. I eat 3-4 pieces of toast a day, that's it. I will be skinny again very shortly. My chart seems to be at the bottom of the bottomless pile of charts. The real killer is that surgeon charged, are you ready? 450 dollars for a 15 minute visit. We did not go over the u/s, he did no exam, except for listening to my heart and saying I had an ugly scar where he would want to operate, and said waving his hand out the door at me, he'd talk to me later, but there was certainly no rush. 15 pounds 15 days later and I wonder what constitutes no worries? Did anyone tell you to put hot moist soaks on that site 4 times a day or so? Hot wet wash cloth or hand towel for about 15 minutes or until it cools. I used to wrap them in saran wrap too. It will help draw out the junk. Usually a topical antibiotic will work, unless you have a big hard lump in that spot and a line going up your arm. Dumb butts, I don't care who you are or what the deal is, you treat everyone with respect, period. That's medicine 101 and very few in the health care field seem to remember that. The most basic medical care is respect the patient, period. morgan

I have to admit, my gall stones have not been a barrel of laughs, but I have broken every toe, but one. My friend said they couldn't be broken, because she broke hers and it was so painful she couldn't walk for a long time. I ended up getting an x ray for one and it was a terrible break and I was walking around all over the place. I told her the same thing. Live with all this other stuff and a toe is nothing.....morgan I can so relate, I need surgery, my son has a horrible infection in his toe and he's on Humira, YIKES, and Dave the hubs, had to get a shot in his elbow for bursitis. Oh what a life.....morgan

No idea Rama, I'd be having body parts break off if I tried that stuff. I'm about as flexible as a rock. morgan

First off I applaud anyone who survives these absolutely barbaric tests! I told my ENT he was a sadist! The damage can be caused by any number of things, autoimmune, trauma, age, there a lot of things. You may have meneire's in the left ear, which is autoimmune. many think you have to lose your hearing, but I have it in both ears and have the "vestibular" type, so have very little hearing loss. The exercises are not fun, but are found to be helpful in most people. First thing you have to do is find out the cause. Acoustic neuromas are a fairly common cause of one sided problems. It's a very benign tumor (100% of the time) that presses on the inner ear and nerve. My guess is, your neuro may want to do a CT scan or MRI to rule that out. They are removed easily and usually completely curative. I have a lot of symptoms with my meneire's, but I also have a lot of autonomic stuff with bp, pulse and stuff, unrelated to inner ear. I'd rather have the tumor than meneir's if the truth be known, you can cure a the tumor, the meneire's is chronic. Good luck with your neuro visit, hope they get to the bottom of things for you sweetie! morgan

Oh man tea, not fun!!!! I'm glad you are doing better and I would not make the trip either. Don't beat yourself up over something you have no control over. Even "normal people" take awhile to recover from this. I'm thankful it didn't rquire surgery. They found that Jake has "natural" twist in his colon and he's had a couple of times where I'm pretty sure it's obstructed for a short time. It's horrible. Feel better soon and congrats on your son's graduation! morgan

Jana, I was a nurse for 30 years, but have been out of the loop for several years. A lot of things have been relaxed I think, which is not always a bad thing, but not always great. I am guessing you are talking about doing blood gases? Where they take a small amount of blood from your radial artery. (wrist)Very few doctors will order that test unless your sats are low and they can get those by sticking a little non invasive monitor on your finger. If you are feeling bad, you should probably get it checked and my guess is, your doctor has the machine in his office. Most do now, because it makes it easier to check pulses and stuff too. You should be able to give them a call and explain what's going on, although with the history I've had with docs, I would just say I'm short of breath. And then ask if there is some way to get your oxygen levels checked. They will either offer or scoot you a minor ER or a regular one. I'd make sure he doesn't have one in his office first though, it will be much cheaper and much less traumatic. They are typically very accurate, so they will see right away if there's a problem. Good luck! morgan p.s. I've always been told my resps are very shallow, but no one's ever told me how fast. I didn't think of myself as a light breather, but they all comment on it. I guess it's good I seem to be in the upper chest normal range. I have tried the yoga and meditation where you concentrate on breathing and slow it down and that makes me light headed. We are all so different.

I don't think I have ever counted my own respirations. I think as long as you feel ok, it's nothing to worry about. if you are short of breath, your body will pick up on respirations, even though that part of us is a bit out of whack. If you can get access to an 02 sat monitor, it can tell you whether it's a problem or not. EM, if we had had patients with respirations of 3, we'd have had you on a ventilator! The usual is 12-24, but that's like saying if you aren't 98.6, there has to be something wrong, or if your bp isn't 110/70 every time it's taken, it's a problem. Our bodies are in constant flux and I can tell you, having done 1000's of these measurements no one is the same. I say if you feel ok, it's ok. Our bodies are pretty good at letting us know when things aren't ok. Interesting though.....morgan