poppetkazutaka

I never know how to act around wheelchair people! XD

Am I acting too nice? Not nice enough? Am I looking too much, not enough?! AHHH!

I'm always so nervous around disabled people, even though technically I am one!

So I figdet and look down at the ground like I'm ashamed and get real shy and try to ignore them and stay out of the way unless they try to talk to me. I get scared because I'm afraid I'm going to offend them! Especially if I can't see anything wrong with them.

I dread the day I have to get a chair, but also fear for the people around me because I'm heck on wheels! [mows people down] I was in a chair once, and I had way too much fun getting around, not caring a spot what people thought. XD

Went to the doctor today. Got one of my medicines officially upped, because I'm a manic depressive wreck. Got the other changed, because the propranolol that served me so well for the past year and a fourth is no longer doing its job. Got an antibiotic because -suprise suprise- I have another infection. This one in my throat\sinuses. It makes my tongue itch because of the cobblestones. I'm expecting to hear the chuck wagon horses any minute in my mouth.

Though it was amusing when he said to hop up on the table and I did, got dizzy, and splatted the wall and table to hold myself up. He grabbed my arm to check my pulse and then gave me a look because it was racing.

IT WAS RACING. I couldn't have been more thrilled. I was sweating. Racing. Panting. And my BP was bottomed. Holy **** it was perfect. The look was, "Hm..." and I was all, "Yeah, about that whole up and down thing, it hasn't been working out for me lately either."

He tried to get my bp and it wouldn't register at first, so he took it again. "...so we're going to try you on the labetalol."

I could have danced. I had a symptom in office. That rarely occurs.

After that wonderful display I went outside and went next door to pay a bill and found the office dark and the office beyond lit with people in it. I stared balefully at the woman there. I picked up my money order and paper slip. I dialed their number on my cellphone.

"Hello?"

"Are you closed-closed or reopening?"

"We're closed."

"Oh...I was hoping to pay a bill but I can't mail it or it won't get to you by the first and-"

"...are you the person standing outside our window?"

"Yes," I said with a sad lilt and pout, and slowly lifted the paper, "and I have money."

They let me in because I was pathetic and I paid the bill. I left feeling rather stupid and returned to work. I will have to fill my prescriptions later after work once I make up the 30-mins extra my lunch break office visit took. XD

Does anyone else here have problems with meat? I can't stand to be around or to smell/look at raw meat in particular. It really turns my stomach. So, I'm mainly a veggie with occasional fish, but I can't cook that myself, either. Weird.

Weirdest thing about me is if it's not bad or turned or old, I LIKE the smell of blood. So that would be a good thing. I don't like to eat it though. I have to have meat WELLLLLLLL done.

So I called the gp and demanded that I get seen soon and that it not take three hours to get in because I was getting critical, having chest pains, headaches, and shaking. I was getting dizzy and passing out, and not having a very fun ride. I thought they were either BP spells or panic attacks, and since the propranolol had been upped, I said screw it and upped my topiramate for the migraines and bipolar (manic depression runs in the family) up to 100 mg twice a day from 50 to see if it would help. It did but not all the way to the next dose.

The lady gave me an appointment next Monday at 1:10, which is the first appointment right after lunch, so I shouldn't have to wait too long! Phew. Maybe I can get my meds figured out now!

And before anyone asks, yes, I mess with my own medicine because I get tired of waiting for the doctors and I know when I'm not getting enough. I'm careful to do it when people are around and I'm not doing anything dangerous. I know when I'll have a reaction and I was having chest pains and headaches so bad I was taking hydrocodone to make them stop.

But! So far today, after four days on the higher dose, it seems to be doing much better. I feel much more relaxed though the headache isn't completely gone and the bp is around 100\68, which it should be. Though I am still having some difficulty with the 'get up, get down, get up, fall down' problem. I did that at the mall the other day after walking over in the cold, and I nearly collapsed in the Lifeway store.

And no one helped me. That's what got me. XDDD WOW CHRISTIANS. XDDD

Annnnyway. Oddly enough, update on the nose, my infection is cleared and my left cavity is doing good. But the septum hole is getting bigger for some reason. I might need a biopsy on that in a month. [sigh]

Sorry I haven't been too present here! I've been working on my book like crazy and am up to 84000+ words and almost at the very ending, then I can edit! YAY~! And reading! Lots of reading!

<3 Merry Christmas~! :3 There's so much going on here!

I don't really get 'hungry' unless I go all day without eating. But that's not really 'hungry' that's hypogylcemic. XD I get the dizzy-stomach-wrapping-around-my-spine feeling and know I need to eat. Otherwise I get 'cravy'. So I say, "I want egg biscuits" or "I want chicken" or "I want milk" and I just eat as my body craves. I don't have meals or anything anymore, I just eat as I want and I do fine. Because I figure it tells me want I need when I need it. Milk? Vitamins and Calcium. Egg biscuits? Carbs and Proteins and Fat. Chicken? Proteins.

I'm protein deficient hypogylcemic, which means I need to eat enough protein and sugar to make sure I have enough protein to make the sugar last. I have problems with both holding. So I can't just grab a candy bar, I have to have nuts and meat a lot, too. :3

But I don't get hungry so I don't trigger, and that's why I gained a lot of weight and had a lot of dizzies there for a while. I had to train myself to remember to eat at least three meals if not constant snackies. I eat like a toddler. If I don't want a meal, I have to at least nibble some cheese or a biscuit or a cracker package or something. I watch my weight to make sure I don't start gaining and if I do I evaluate if I ate too much or not enough and then make sure to watch it.

Usually it's not enough so I put more food in and sure enough I lose the weight.

tl;dr version: No I don't get hungry, I just crave things as I need them. :3q

I think the original patient with NET deficiency had high BP reactions to surgery and pregnancy. NET deficiency is also involved in Essential Hypertension so perhaps this might explain it.

Yeah an alpha/beta blocker might be more helpful.,

What is NET Deficiency?

Hey poppett if you are hyperandregenic then the propranlol could be causing the higher BP.

I don't know if I'm hyperandregenic, I just fit the mold, but the doctors haven't given me an acurate diagnosis yet. :3 Just a lot of maybes and might bes. XD But yeah, it'll be fine for a few days on the new dose and then start going up again gradually. I just don't know what to do. Usually it takes three months to get this bad but it's only been a few days this time.

Of course, the only problem with seeing my doctor now is I'm out of Paid Time Off and Sick Time, and it takes at least three hours in a waiting room to see him. Now isn't the time to make an appointment...

I just was wondering if anyone else is sort of in "hiding?". I really don't want people to know that I have a problem ( I hate attention and I hate trying to explain POTS).

I can't work, and I am home most of the time. My mom drives me to the dr.'s and such, I can drive a little but not far.

I really am a private person and I wonder who else feels this way... or am I crazy? An old friend from middle school wants to get together and all I can think of is how do I tell ehr I have some weird problems? Even if I can make it to starbucks or something. Anyway I know this is weird but I wanted to know if anyone else feels the same way.

Even my in-laws don't know I have a problem-we don't see them much- I just had to get though 1 dinner this year and my husband covers for me.

I don't hide it. People ask me "why is your face so red, are you sick?" and I'll tell them "yes, I'm a dysautonomic, or an easier way to put it, my brain is misprogrammed. I'm perfectly physically healthy, but my mind doesn't tell my body to work right." This usually interests people so I explain how hard it is to get through the day and for most people who know me, the active bounce around that I am, they suddenly see how hard it is for me to be so high strung. So I like to tell people about it. It makes them more aware that the people they see aren't as well as they think. Of course, we work around a lot of disabled under the surface so it might be different here but it's nice to get it out there. :3

Check my siggy! I use Burdock Root. It's amazing stuff and it's natural so it doesn't hurt! It doesn't make you go, it just loosens the walls. Also, I had my gallbladder out so I find if I need to make myself go I just eat something fatty. Since I can't digest fat anymore, the fat squishes everything else out. XD

Please take all this with a shaker of salt. It might not work for you and I'm not a medical doctor. XD

I had more surgery last week on my sinuses because they swelled shut. I had just upped my propranolol because my bp was getting to where it was rising and rising again and causing me to get the headaches and dizzy and irritation again. Even right now I feel strangely irritated and shaky like I need to lay down but I'm at work so I can't.

I'm at 120 twice a day. My doctor won't give me higher until I see him because obviously something is up when I keep needing a raise every three months.

I'm starting to get worried. What's going on here? I can't lay on my back after being up for half a day. When I was off for my surgery I was alright so long as I laid down for most of it. But now that I'm back up again I'm getting sick again. I can't quit work or do half days, that's not an option. I refuse to be that sick. I need medicine or something to fix this. A change in beta blockers perhaps? Is it a tumor? It's like the pills aren't even working. I even took an extra 60 last night to no avail.

What's going on? I was fine up until my birthday again! This all started last year and then this year in September it got way worse and hasn't responded well to medicine. Please help. I'm very scared and I don't want to have a stroke or heart attack...I nearly fell in the shower this morning -a first- and I'm beginning to feel like a true invalid. I can't do this.

Did you eat a lot? Sometimes if you eat too much your blood pressure can fluctuate or you can stimulate your vagus nerve and cause a crash. I get sleepy when I eat too much so I have to settle for quick, light meals or nibbles.

I'm so happy you are doing so well and your post came at a great time for me! I am having my gall bladder removed tomorrow and am quite nervous about it. Mostly nervous because I don't have stones and I keep reading that many cases don't resolve after surgery with just a low ejection fraction. Did you have stones? Anyway, it is great to hear your success story and I pray you continue to improve and eat up!

I didn't have any stones, just two polyps and perfect test results. But I couldn't hardly eat without getting sick and hurting there unless it was low fat foods or non-wheat gluten. It confused the doctors on why I couldn't eat bread and still they're not sure. XD

I'm thinking God was looking out for me. Maybe the polyps and the hardening was all signs that eventually it would have gone cancerous and by the time it would have shown symptoms bad enough for the doctors it would have been too late? Who knows. I'm just happy to have it out. :3

I didn't fall off the face of the planet! I have been recovering from surgery and working on NaNoWriMo~! I've almost gotten it done. My surgery was Friday and I expected a lot of pain but I believed God wouldn't let me suffer and I didn't! I have four incisions and though bruised they're nothing! I feel great and have been able to eat basically anything I want now. Even things that bothered me for years haven't bothered me.

People say my color even looks good and I seem in much better spirits than before. The doctor -I don't remember seeing him but my mom did, my follow up is on the 30th- said that he didn't believe what they found should have caused any problems. Apparently my gallbladder and ducts were beginning to scar over, turn to leather and harden. But not that bad.

Of course, he's a surgeon, not a gastro doctor, so...that's my opinion. XD And there were the two tiny polyps.

I'm still not sure why God wanted me to get the gallbladder out but he's out and I'm feeling great. I can't eat large amounts of food. I fill up on half of what I was eating before but I can eat and that's all I'm happy about. :3

I find I'm not dizzy and tired as much as I was before either. So maybe I was just starving! It's very strange. I still have some issues with blood pressure though, and nosebleeds, but I've got follow ups set with my nose doctor for that one at the beginning of December. Still having headaches...

I'm beginning to wonder if the 'autonomic dysfunction' I've been labeled with is a box of physical problems that have gone unrepaired for years. Polyps, scarrification, and the like. It looks normal on the outside, but on the inside it's a wreck? Because all my tests for my gallbladder function and such were perfect, but it was turning into one large rock.

I drop things, miss things, get intention tremors, and notice when I over do it on projects and am getting tired I can't focus as much as I would like. My hands get tired and won't do detail work or curve as much as they should because it's almost as if my brain can't tell them how to do the positions, not that they're not able to. It's slow and uncomfortable. But I manage. I take a break, rest my eyes and head, and get back to it. :3

It's all about twice the focus for half the work. XD

Went to the general surgeon today and he ordered a HIDA scan for Monday before deciding to do surgery. He's not 100% sure that I even have polyps. He says they might just be stones that fell off and got stuck in the lining. O.o

He's confused because the range of food I eat isn't the same for gallstones. I told him the things I can eat are chicken, potatoes, popcorn, spicy things don't bother me, non-fat things don't bother me (non-fat cheese, milk, and non-fat foods), french fries, eggs, turkey, anything that isn't bread, no sugar, no sweets, no fats.

He says I shouldn't be able to eat spices or grease. I say I can go to McDonalds and chow down on a Kids Meal or McChicken with Fries so long as I don't eat the bread and I'm just peachy. The minute I eat the bread I could just die. I can eat a bunch of 0 Trans Fat Chili Cheese Corn Chips and yet I can't eat more than one bag of Baked Cheese Doritos or I want to die. It doesn't make sense and sounds more like Celiac or something of that nature.

But if that's the case, then why can't I eat fat either?

So yeah, it's almost like my gallbladder has gone insane. If you even touch him, he hurts. He poked him earlier and it hurt and ever since I've been 'kicked' periodically with sharp pain up until an hour ago. So Charlie (polyp one) and Phillip (polyp two) are being onery for no cause why...

Any thoughts? And is this HIDA scan going to hurt?

I hated it. It helped with the pain, but made me feel like I was tripping on drugs. It also caused heavy water retention in my feet and face, and at least ten lbs weight gain in the first week! I don't recommend it at all.

So I had my tests today, but I won't know the results of the ultrasound and upper GI until tomorrow or so. I do know, though, because I was watching and talking to the radiologist, that there were polyps on the gallbladder. I knew the dots were abnormal because she was putting arrows and crosshairs on them and I know that means they're marking them for review.

"So what are those thingies you're marking? Are those the stones?"

"...no. No, those are polyps..."

"...o-oh...polyps...huh..."

She also marked the study, "2 polyps with no motility" which I think means no movement, right?

I'm not sure how big they are since I'm not good with estimates. I know they are probably the reason I'm hurting because they are in the same spots I've been hurting. Also, I'm not sure if they found stones. It was hard to see anything on the squishy GI. The liquid just zipped right through on the x-rays and started squirting on through my stomach like it couldn't wait to go through.

All day aside from the heavy food I can eat such as potatoes, it's been eat and then run to the bathroom. It goes out that fast. Not sure if that's the gallbladder or the autonomic dysfunction...

Just a quick FYI: If you do have a gallbladder issue and they take it out, you'll probably do an outpatient and not have to stay overnight, but it's pretty painful for at least the first couple of days if not a week or so. You have to be very careful to eat bland foods for awhile, and you may not feel like going back to work for a week or more. I sure hope that's not it, but just want to let you know how it can be if it is your GB.

Best of luck, and keep us informed!

Jana

I read about that last night. I only have a week or so of PTO so it'll have to be a couple days and back to work, unfortunately. I did it for the tonsils, I can do it for the galbladder. XD

I am glad you are feeing betterr. Yes...I do think that all these autonomic problems do make us gun shy to go to the docs. I really get afraid they will think I am crazy. What a shame right? I feel so ill most of the time...feel like I am dying...but I am burned out on docs...so I just won't go and/or complain to them.

Erika

It gets worse as the day goes on so hopefully between the medicine and the tests on Tuesday they can get something found and fixed. The only problem is I can't have picked a worse time. My supervisor and partner at work is on vacation this week! XD Which means when I'm gone, no one is there. So when they do the tests I won't be there and if they decide to do surgery I won't be there either! But hopefully recovery time isn't too bad so I can be back at work in no time...

...then I'll be the one needing a vacation!

My opinion is that you get yourself some help ASAP. If you can't even drink water, and you're in that much pain, something's WRONG. Please go to urgent care or the emergency room, and let us know what happens. There are several things it could be, and you may need immediate attention. Also...I sure hope the only thing you're eating for an entire day isn't a Happy Meal, is it?

My best,

Jana

Well, I did go. I was there all morning. I have a kidney infection and possible gallstones. Also, my tummy is spasming in pain so he gave me antibiotics, belladonna phenobarbital, and nexium. On Tuesday I have an upper GI and an ultrasound scheduled. I was talking to the lady at the pharmacy and she said she just had her gallbladder removed and had the same symptoms, and low and behold, just like me had been on a diet and suddenly lost twenty pounds. Apparently, sudden weight loss like that can cause gallstones.

I didn't know that. So that might be my problem. I have taken the antibiotic and just now the belladonna elixir. It was only slighty more tasty than what I imagine the stinky organic plant food to be. XD

But I am feeling a bit better. I don't feel quite so whiny now that I know something is actually wrong and it wasn't just me making things up. I guess all these autonomic issues make me gunshy to go to the doctor no matter what.

If you have figured it out to flour products, see about getting checked for Celiac. It can cause abdominal pain, too.

Of just TRY a Gluten Free diet. Many web sites about this and even online shopping sites if you don't have GF items in your stores. The breads/dessert things can be pricey but just try using more rice and potatoes in place of bread. Easy to find shopping list of foods to avoid as well.

Might want to run this by your doctor but it's something you can try on your own. My sister knows of a lady who is not celiac but FEELS better when she avoids gluten..it's like a wheat intolerance but not Celiac...

As far as Celiac itself goes, many symptoms of Celiac besides lower GI distress.

You may want to examine gall bladder stuff too.

Good luck

Well, I woke up last night, took a drink of water, and about died. So its not just wheat. It's things that make my tummy swell. I can drink coke and burp and be just fine. Obviously I can't just drink coke or I'll dehydrate.

The question now, of course, is since it isn't emergency serious, do I go to the urgent clinic or the emergency room?

So I'm not sure if it's autonomic related or not but...for the past few days to the past couple of weeks, I have had a terrible tightness in my chest. It's not heartburn. It's not GERD. It's not acid reflux.

When I eat, especially things with bread in them such as crackers, pop tarts, bread, etc, I get very swollen feeling around where my gallbladder is. It hurts so bad that I cry out and arch because I have to lay down and in about fifteen to thirty minutes it passes, but it's like a rock going through me, from my breastbone down into my stomach and on.

Most of the time when I eat what I can eat, which seems to be the greasier the better (ie I hardly eat fast food but lately Happy Meals have been what I have had for my meal a day) I immediately have to go to the bathroom. It's usually runny and fast but not painful. I feel like a toddler. I eat small meals because of the swelling painful feeling in my gallbladder. It's not sharp, but like a heavy feeling of no room where everything gets hot and even my kidneys hurt. If I keep the meals small and oily\cheesy\liquid then the pain isn't so bad. If there's bread or dryness in there, God help me.

I have no fever, no chills, no vomiting. Nothing in the stool, no blood or undigested food. Obviously if I go to the doctor they'll say there's nothing they can do. But I was in such pain today I was crying. This has got to stop. Please help. Everyone else I have asked that I live around just says, "Oh, I wish there was something I could do". But doesn't do anything.

Update:

Three things:

- I have no forehead sinuses.

- I have a left deviated septum. It's damaged, and needs to heal, so I have a follow up in two months to make sure it's growing back. I broke it because it was so clogged with infection.

- My left sinus cavity on my face is collapsing. Eventually it will completely close off, might absess, collapse, and pull down my left eye bone to the point that I need surgery to repair my face.

- Surgery to drain my sinus, however, might not be wise. Because they would have to randomly poke holes to see if they could drain it, the 'grey mass' might be 'drainage or something else' and if I get sick again 'it might come back' and we would need to 'revisit surgery'.

I was wondering why, when I looked in the mirror, it looked like the left side of my face was sagging or drooping. I thought it was my medicine or the autonomic dysfunction. But apparently not. It already started pulling on the facial bone.

Why can't there be a magical POTS pill? It's not fair.

And WHY can't people understand there ISN'T a magical POTS pill?

Seriously! I was trying to explain to my sister what was wrong with me and her response was,

"Yeah, well, can't you like, take a pill and get better?"

IF ONLY.

I had taken Mucinex which contained the above cough suppressant as well. Normally, I would avoid the dextro... but my husband had used the combo medicine and it was in the house.

I noticed it "suppressed" by blood pressure and heartrate, both coming out way below my normal. I felt yech and luckily I had some cortef (hydrocortisone - adrenal hormone) in the house and took a bit of that to normalize my stats.

Has anyone else noticed a reaction to cough suppressant? Needless to say, I'm going to avoid it from now on.

BTW, I'm not really sick anymore. I was using the Mucinex to loosen congestion. I did not need the dextro part.

I think that's the stuff that's in NyQuil and they tell you not to take it with beta blockers. I take it anyway because NyQuil is the only thing that works on my stuffy nose when I'm sick, and helps me to sleep when I'm not able to breathe when I'm sick. So far it hasn't crashed me out too much...

Does standing up and walking around aggravate your other symptoms too? Not only do I feel lightheaded/dizzy/nauseous when I'm upright, I also occasionally get stomach pain/all over body pain, bladder problems, bowel incontinence. It's like I have already run a marathon when I stand up. If I have taken my salt tablets I am usually fine with the BP and HR but it's actually other symptoms which force me to lie/sit down again (as in I'm in too much pain to stand up and walk around)

Anybody else get this? And do you know why?

Janey

I notice lately, that when I get up and go walking at lunch, when I'm at stores, I feel like I need to go poo RIGHT NOW. If I wait a little bit, I'm okay. But it confused the heck out of me. It's like this horrible feeling. I go to the bathroom...nothing. But I really did feel like I needed to go really bad. Sometimes it's just gassiness, but it's still when I get up and move around. I chalked it up to the movement of my legs and the wiggly of my colon. XD