Wufflebear

Name: Heather Michelle M Birthplace: Kansas City, Missouri Kids: One little girl. An almost 5 year old fireball! Pets: 5 cats, down from 7 (two oldest died this past summer. One was 23 years old. I think that is like a million in cat years.) Favorite color: ohh hard. I think blue. Favorite flower: I dont know the name of it.... Kitchen theme: Handmedown. Anyway, I dont cook I make my domestic slave..(aka husband) do that. When we were house hunting we would come out and my dad would say, so did it have a fridge and stove? and I would not even know....That is what I keep my domestic slave for, amoung other things. lol Favorite drink: diet dr. pepper and honey lemonaid Last TV show you watched: project runway Last movie you rented: ice age Favorite food: ummmmm fooooooddddd. ANything sweet. Favorite TV show: smurfs Red or Pink: pink Favorite ice cream: chocolate or coffee Favorite crayon color: blue Ever bungee jumped? no you could not pay me... Eye color: blue Hair color: I say brown, realists would say grey. Farthest you have ever been: Europe. Last time you cried: monday after a ER visit. Favorite game: chicks & Hens, but I jump everytime the peg thingies shift. Black or White? black Rollingstones or The Beatles: neither Last food you ate: a donut and a gateraid...breakfast of champions. Diamonds or sapphires: saphires Beach or the mountains: beach (I can see it from my house! but like it is 45 degrees and the wind is blowing way to much...so I will watch it from here.) Sweats or jeans: niether...skirts all the way... Ever went skinny dipping: yep, in my grandma's in ground pool as a kid. And at some clothing optional places as an adult. Married more than once: Nope. Just once... What book are you reading now: none... Cant find anything to inspire me at the moment. Hobbies: cat petting, reading, knitting, sewing (not well but that does not stop me), annoying my 4 year old (I am good at that) Favorite actor: Adrian Paul just cause he is cute. Favorite actress: I dont know..... Favorite candy bar: Hershies bars, hershies kisses Ever toilet papered someones house: yep Gatorade: like it...but not the greeny one...dont like that, and the red one gives me a kool aid mustashe... Favorite Fruit: strawberries, melon Men with facial hair? Yep, provided they trim the mustashe..Nothing tickles worse than a stray mustash wisker up the nose....lol Steak or lobster: steak Gold or silver: gold Dream vacation: beach, me, sun, sand, no movement...ahh the life! favorite singer: Enya, Creed, Loreina McKennet, Matisyahu!!!!!!

what about ovulation? I get really bad feeling then too... I hope you are feeling a better.... ((((HUGS)))))

So I saw the cardiologist yesterday. He said the stabby pains I was having in my chest were not my heart. They did an ECG and it was fine. Still dont know why my chest is so uncomfortable though...Mostly sore, like a bruise that gets worse if I walk around, bend over or put pressure on it. My cardio still thinks all my problems go back to the neurocariogenic syncope. I told him I dont usually pass out anymore, I just get all the other symptoms until something too much happens and then I can pass out. I thought the NCS was the actual passing out..but?? Anyway, he thinks that when I start getting orthostatic my breathing gets weird and then I somehow manage to hyperventilate...so he mentioned hyperventilation syndrome. I am not sure how you hyperventilate w/o knowing it, but?? I know I breath really fast and shallow normally and when I start to feel bad I breath either faster or slower/deeper. I mentioned that sometimes I dont think I am breathing...like it has gone to shallow or something and that he thinks then when I 'remind myself to breath' I am actually taking in extra breaths...thus crashing my co2 levels. He had me purposefully hyperventilate for a minute in the office and I felt pretty icky..room got dark, got that vibraty feeling all over and my face tingled. Not big time tingles, but more vibraty tingles. He did not think he needed to run any tests. And wanted to start me on a beta blocker. I asked him about doing a tilt table test and he thought that it was not needed...He stressed how I would hate it...my heart would stop...I would pass out.... (like I have not fainted before?? all alone??? Heck, in a hospital...no biggie.) In the end we scheduled a tilt table test and a heart echo (just to cross all our T's and dot our I's, he said) for April 6th. I am not crazy about forcing myself to passout on a tilt table but I still think it might provide usefull info now or later, and if it doesn't then it doesn't. I felt kind of silly to press for the tilt table, but if nothing else it will 'confirm for me' my diagnosis. BTW he said that I don't have pots from my description...He said that I have had what I have all my life and that POTS is something you only get as an adult. But I guess the tilt table will tell.....

Well I saw the cardio yesterday and he said it is not my heart. So that is good! I still dont konw what it really is...it is not stabbing anymore but more of a dull ache that definatly hurts if you put pressure on my chest and the ache grows a bit when I breath in or bend over (sometimes). I dunno... He thought at first it was an inflamation of some lining or another in the lungs? but he had me put pressure on my chest and breath in and no stab... so I guess it is not that.

Your PCP sounds very nice! I heard that comment about how what I had was just not discovered yet as a kid by a nice doc, when the rest were brushing me off as a whacko. It is tough, and frustrating and scary sometimes... I know.

yea, I don't share this w/ folks either. I can imagine the response.. It is like when someone feels strong emotion I can feel it...If it is my husband I cant control how it affects me and I start sobbing too...If it is a cat or my daughter or a client or another family member I just feel it radiating and I can like feel it...who knows... no space aliens though..lol When I am on top of things I can focus on what I am feeling and sort of channel calming energy back...it works on my pets and daughter and clients... weird but true. I had a client tell me two days ago that they would only talk to me because I somehow always magically calmed them down and they felt happy afterwards... (and we are just talking software support...) I have really enjoyed reading peoples posts on this one!

yep me too. The amazing standing stomach cramps that magically lesson when I lay down.. Sometimes it is just a weird yucky feeling too and that definately goes away when I lay down. Hey, does anyone think they can see their tummy poke out more when they have been standing for a few minutes?? I swear sometimes mine does...

My thing is knitting. I love to knit...But Yea, I get sick feeling and get a monster headache sometimes, blurry vision and the works. Some days I can do it and be fine, but most I can't....sometimes I do it anyway though. lol I worked at a wolf research park one summer in indiana and we would go in w/ the pack....wow, you really had to concentrate and be mindful of the wolves body/face language for the time you were in there and it was totally totally totally draining for me. Once I started to feel sick and got out, cause they are smart animals and can tell that about you...and then you can be in trouble. No one else seemed affected by the concentrating and being overly observant...so I figured it was just me.

hmm. maybe cause I was perpectually bandaging my teddybears as a kid, and in and out of hospitals myself that I can do this.... (-;

yea, right now it is ok. but sunday morning it started for like 1 1/2 hours stabby and achy when it was not stabby. Woke me up. Then all day sunday and monday it was just very achy and periodically I would get a stab/pinch. But sometimes the pinch was other places (right breast near armpit, back..even got some very mild pinch feelings in my back that were with my heart beat...which was beating very hard at that particular moment.) It was monday from 12.30-1.30ish where it started pinching/stabbing w/ every breath again...and drove me to the ER for help.... Not like I got any. Yea, I don't think it is my heart for the most part...more like cartilage or something cause if I lay on my left side in a ball it does not pinch...just aches. And if I hunch over it would stab me worse and sometimes stretching around helped a bit....but I dont know. I have had it before but it was always at night and only just when I went to bed for a bit (10-20 min) and then it would go away. I get intermittant stabby growing pains in side, breasts and then sometimes in the chest but not as much as this episode.

I tried. I went to the ER and had a bp reading of 147/52 and a pulse of 106 and then they put me on a gurney and I waited 3 hours...I finally asked as as they were not going to get to me yet...I left AMA. They had told me that "you dont look like you are having an emergency" and "when you say chest pains we think we need to clear out the ER" and I think I explained pots/dysautonomia 7 ways to sunday... I see my cardiologist tomorrow so I will bring it up there... It really felt pinching...like something was getting pinched when I breathed in.... thats why I wondered about EDS or costochrondritis..

Well I started having problems when I was 3 or 4. My first LOC was at 5 but it was in the school library and no one saw it but me...No one beleived me either. At 6 I lost consciousness in my moms car and was still out when she got me to the doc and they called it 'hypersomnolense'. I had more events and sometimes I would just lay and stare...they called that 'daydreaming'. Then I was in the hospital at 9, 11 and off and on from 16-18 years old...It got called a lot of things...fibro, cfs, hypoglycemia, anxioty, other various psychosomatic things, migrains, IBS.... I walked away at that point from docs...and just decided to pretend I was normal, so to speak. When I was like 27 I had a lot of trouble after I Lost a baby... I was going unconscious on bus's, in bus stops, on downtown streets. So I went back to the doc, it was that or loose my job, and they thought it was the hypoglycemia...but the glucose was always normal when I could manage to test it before hitting the floor.lol Then after my daughter was born it changed. More tachy stuff, more frequent bouts of swollen glands, more everything......I think it is because there is more stress on my system, basicallly cause my daughter is allergic to sleeping aparently...And my husband has heart problems so he could not help too much sometimes... I think every major stress my body endures changes it... Like everytime it gets bad, some new peculiarity is added to my list of things that happen everytime I have an event... Having a kid is so worth it but we had to adopt a pretty strict schedule in order for me to deal...And you definately need help. I mean I have lost consciousness or had a problem in front of my daughter but I try like heck not too. kids put your body into sleep deprived mode and that is hard normally...It is also harder to take care of yourself...like stay in bed for the day when you are sick... Also we tried preschool with her, but I had to pull her out. I was catching a bug a week and then started crashing big time over and over...I am still trying to figure out what to do about that. She is enrolled in kindergarten for next year.....but we shall see...parhaps a bubble suit?! lol I was told vasovagal syndrome when my daughter was 2 but then again...I only wanted a quick letter to give to my boss to explain why sometimes I could not come in. I was not interested in anything more... I go back to the cardiologist tomorrow...I think I am ready to dump the baggage and see what I can find out, and besides I feel like it is getting worse.

I was thinking....I always have this urge to wriggle around and stretch my chest open...like something is getting pinched... I am double jointed etc...could it be EDS Thing or ??? Thoughts??? Does Costochrondritis go w/ EDS?

I was thinking last night as I could not sleep cause I was so darn uncomfortable that those of us with dysautonomia sure are in tune with our bodies. I mean we have to be able to adjust at any moment becasue we can feel our pulse or bp or something else going a little arry....I know I am constantly doing things to adjust my body...deep breaths, a fidget here and there, a cold drink, etc. Plus some of us are affected by barometric pressure, and nearly all of us are affected by temperature etc.. I also notice that if someone around me has a strong emotion...I can feel it. It is hard to explain but I can kind of feel it radiating off of them and into me... I thought perhaps this comes from years and years of being so organically involved in my own bodies processes....(like knowing that now is not a good time to hold my urine or breathing steady and concentrating on my heart beat when I am about to LOC so that it will help my heart speed up...since I can't physcially control my heart...etc.) Anyone else get this??? Just a thought... It can be kind of cool, but also draining.

I tried this a few years ago...just lifted the head of the bed a little and it made me very uncomfortable. I would get symptomatic at night and could not undo it since I could not get perfectly flat...

The only drug I can take ok is ibuprofin. Zoloft and Paxil made me way sicker. It is like it took my normal stuff and doubled it. My theory is that if it makes me so horribly sick it can't be good for me. I am terribly afraid of taking medicines anymore because they make me so sick. Side effects are like a list of things that will happen with me. How long I will stick with something depends on how unstable I feel. If it makes me feel way out of whack and unstable...it is out-a-here in about a day or two... I could not stick with zoloft or paxil for more than a week. All vitamins make me throw up. Cold medicine makes me pass out. Aspirine makes me unstable, but not terribly so. Ibuprofine is ok. fun huh!

yea, I feel better so far today...but each day seems to hold its own curiosities for me. lol Yea, my daughter loves showers w/ mommy... Always has...and luckily my shower has a stool in it!

even when my blood glucose levels are ok...eating a bit still helps me feel a little better for a little bit. Don't know why though.

I don't but no one has replied yet....and I wanted to let you know I am thinking of you.

so Normally I get a shower w/ my toddler on wed night. But she was itchy today so after dinner, I got one with her tonight, then got her hair dry(while sititng on the floor) and oh fun...s.o.b, hot/cold flushing, nausea, face felt numbish/stiff...ugh Finished her up and sent her to work on a paper doll for her friends birthday party while I picked up her room...5 minutes later I was feeling really bad. so I laid down while dad finished getting her ready for bed... His comment? "you look like you need a drink." ...er, I don't think that will help me somehow....lol..perhaps a new body? Anybody got a brainstem to donate?? lol So I guess this is what I get for varying from my normal, perfectly good schedule.... I really should know better. lol

happy, healing, soothing, warm, relaxing and sleepy thoughts for the both of you!! >^..^<

I get a similar thing sometimes. I have even take my blood sugar w/ a little blood test kit I was given at one point when they thought my pots stuff was blood sugar related...and my blood sugar will be normal.. I don;t know the answer but I think it is our wonderful bodies being potsy. p.s. you can get a blood sugar prick test thing (like my scientific language??? and I have a B.S. in Biology too) at the local pharmacy...I dont remember how much they cost though.

its hard to beleive our bodies can do this... and still technicaly be ok! In other words not having angina or a stroke or something awful. ((((Breathing))))))

When I was at the ER yesterday I had a blood pressure reading of 140/52...Normally I run 10?/7? or 9?/7?. They dismissed it as nerves...but really...I was not nervous. Thoughts?? I see the cardiologist thursday and I will bring it up then too.

I don't have problems on the plane but I do have problems once I have arrived...especialy if where I am going is at a different altitude. I just have to take it easy and drink lots, and eat lots of salty stuff. Getting up on the plane is a good one. Also if you manage two seats together you can stretch out and wiggle...that helps me.