Wufflebear

Yep. My body adjusts in a week or so and then upping the dose just makes me sick from the side effects.

FULL UPDATE: I now have more info now than I did yesterday...trying to get info out of men is like pulling teeth... Anyway, the nodule on his lung (slightly larger than a button in size) is in a tricky place. If they biopsy it, it will deflate his lung ,so they can do nothing. He also has a cyste on his kidney or liver (right side) which the doc "was not worried about". The holter monitor showed irregular heart rythems stemming from every single part of his heart at different times, regular heart rythem for any period of time was pretty much absent. His heart rate while on the monitor ranged from a low of 40 bpm to a high of 130bpm. His BP is running very low at 80/60 with a pulse of 60 at the time of the doc apt. The doc said his pulse and bp were dangerously low for a beta blocker The CT scan missed the entire left side of his chest cause the operator said that "HE moved" but he did not. His heart is simply beating so hard that it does cause his body to move with it. The doc said that he "felt his heart beat so hard cause he is thin. Most people have lots of padding so they dont feel their heart beat". My husband suppresed the urge to tell her to go read some chicken entrails at this point...perhaps time to break out the leeches?? He has been thin (160lbs or so) his whole life...So was I till I had our daughter. I am sure there are lots of thin folks around who can stand without their heart beat causing their body to move... The doc did already make an appointment with a cardiologist in Eugene for August 8th. In July they would like to do a month long event monitor. Other than that they did a rectal exam (talk about getting at the problem the hard way) and she said they could do a colonoscopy when they get back if he wanted. But they were not sure anything more was needed since nothing was 'presenting itself". He has not lost any more weight but he did start a body builder shake suppliment to stop the weight loss (2000 calories a shake (2 a day))..he has not gained any weight either...She offered him a sedative and suggested he go and enjoy himself! Thank you guys for listening and for the suggestions...It is really keeping me sane. WHen I talk to family about this they go bazerk and that does not help me out any.

Ok well he had the appointment. I was not there so I am getting the Male watered down version... The Holter monitor results showed irregularities, skipped beats and other problems stemming from all different parts of the heart at any given time. He actually had a regular ol' normalish day the day he had it on...ie: nothing major. There was aparently something irregular going on at all times pretty much, but coming from adifferent part of the heart at any given time. As far as the weight loss and constant chest pain the doc was not sure cause "nothing was presenting itself". Blood work (cbc + Thyroid) was normal. Electrolytes aparently normal 15 sec EKG normal at ER he did not mention anything about what she said re: the CT scan but I know there was a nodule on the lung too small to biopsy. bp/temp was normal. I am feeling the need to go postal......

Happy Belated Birthday!!

This pic is what the heart monitor looked like in the ER. On the first trip his line was ok unless he moved and then the whole thing dipped down. The second time it was like this all the time. When he moved his spike (R wave) jumped up off the monitor and the zigzaggy part would dip and stuff....but the ER doc said it was ok...Some beats were further apart than others. I did not see any that were super close to eachother... The other thing is that his heart beat has always been very forceful but now it is very very forceful and the chest pain is constant... The appointment is this afternoon. I will update you guys then.

He keeps telling me "i cant beleive they dont beleive me" and "they are brushing it off as anxioty" and "they tell me to live with it"... "They offered me sleeping pills". So I said "what kind? were they fun??" lol My only response is, "yea, been there done that...." On the up side I have vast experience ribbing (and that is putting it mildly) front desk staff to get to a doctor or nurse, and equal experience with doing the same w/ docs.....and I am not bothered by doing it. My body has taken a beating for sure...but my daughter and I are doing lots of puzzles and things that are quiet stuff...Luckily I tend to do ok during any acute event but afterwards when the natural adrenolin hits my already wacko body....then there is a rumpus.

Update: Thursday I called around to find a new PCP for him. There are two medical clinics in the three little towns near us and there was only one other doc willing to see new patients and they could 'not possibly fit in a new patient till july 7th". I explained the urgency and they said to call his regular doc and ask to speak to a supervisor.. I also drove him in to his PCP so we could demand to be seen again and we were rebuffed. Thursday night was awful. Tachycardia, irregular beats, constant chest pain and pressure, shaking chills but no fever. He wrote a letter to our 5 year old that night and spoke to her in the morning. It is a conversation I cant even think about. Friday morning was bad too. He just held my hand as tight as he could. He fell asleep and so I got on the phone again and YELLED at the front desk staff of our doctors office untill I got passed thru to the head nurse. Who opened his file and found the notes of all our calls and visits just tucked in there...the file had been reshelved. She said to take him immediately to the ER down here. (the ER where a friend of mine w/ a pace maker went last week, was found to be anemic, was given three pints of blood which triggered a heart attack and had to be life flighted to Eugene. Where last month a friend of ours had twins, both cords wrapped the second babies neck and the hospital had no anestesialogist on staff and they called the on call one but he was an hour away, so they gave her morphine and did the c-section..) So I did it but not happily. We went to the ER and they told him they did not do diagnosis', They did a 15 sec ECG and again ruled out a heart attack and pneumonia... (deja vu). They did do a CT scan of just his lungs and they did find a small nodule but it was too small to biopsy. The doc said he suspected cancer or a tumor but we would "have to see his regular doctor about that."They sent him home and said "you will likely have to live with it." Actual quote there... I called the PCP nurse again, and the earliest they could 'squeeze him in was this coming wed afternoon." BTW the bloodwork (CBC and thyroid) were normal. We still dont have the HOlter results yet... He does not seem to be loosing weight any more and our scale is about 5 pounds low so he is holding at 137 or so. He is forcing himself to eat but it is all going pretty much straight thru him. His symptoms so far are the weight loss, heart rythem problems, very hard heart beat!, bouts of chills (the shaking of which triggers his heart to race and skip..you cant even tell one heart beat from the next when it gets going), Exhaustion, SOB, food going right thru, dizziness, constant chest pain, stabby pains around collar bone, pressure in chest... He was supposed to take our 5 year old for a month long camping trip (they have been planning this for a year) to yellowstone etc begining 06/01 and yesterday he decided he still was... Just shortening it and going slower and will turn back if it gets bad. We shall see... I took our daughter to the memorial day parade saturday for some lightness while he slept...She desperately needed a little lightness. Thank you everyone for your prayers and thoughts. They are keeping me sane. We had planned to be remarried (10 year mark) on july 2nd. G-d willing... BTW I am not sure of his BP. I do know the heart monitor they hooked him to had the line go way up off the chart and then dip down a lot and then it was jaggedy till the next beat. Wed it only did that when he moved..if he was still it was a normal heart beat looking line... Now it is constantly like that. When he moves the beat spike goes way way up, the dip goes sharply down and the jaggedy bit till the next beat is more pronounced. (makes sense huh? lol) Our appointment w/ the pcp is wed at 2.50p p.s. both ER docs told him it was likely anxioty. Yea right...

Yep, it is the US.

Thank you. Yes the medical community here is a sight to behold... Anyone know what it is called when the heart tracing on the monitor goes all zigzaggy between beats and dips down like a inverted arch? He had that every time he moved...

My husband was born with a heart problem. His mother though converted to christian science and at 7 years old when his heart really started going fast, skipping, pausing etc they would not do anything...So he has lived with it. He is now 45 and it has always bothered him...but he has been very active despite it. Well about a month ago it worsened. No just walking across the room has him out of breath, and his heart is skipping and jumping and pausing. He has lost weight. He has lost 30 pounds in 3 weeks. He is down to 135 pounds. He is out of breath, normal heart rythems are now not the norm for him. His heart has always pounded but now if he stands still you can see his body move with the beats. I cant stand to lie next to him cause the irregular heard beats cause me to cough.. I took him to the ER yesterday in Eugene (two hour drive) cause our local area has no cardiologists and no docs in the hospital at night or on the weekend. (his mother died there a few years ago...had a clot in her lung..it was friday afternoon, the doc put her in ICU, gave her some medicine and left for the weekend. She died mid day saturday.) Anyway, considering that I took him to a hospital with doctors. They did a 15 second ekg and told him it was not a heart attack, did a blood test (limited, not a full cbc or anything) to test him for pneumonia and put him on a 24 hour holter monitor. That was it. They said to to to his PCP, which we have been calling now for a week and a half and they "just cant get him in". WE stopped by on the way home from the ER and got the same answer. Still today no call from the PCP even thought they said they 'would leave her a note that she would see first thing..." A 6 foot 2 man can not weigh 135 pounds...and still loose weight for no visible reason. He is completely immobile for the most part. Very dizzy etc. I mean he gets up and walks around the house but it causes heart problems. The monitor he was hooked up to (EKG like thing) was showing a spike for the beat and then jaggedy things where the little bump and flat part should be if he so much as moved his head or raised an arm. Or it would go jaggedy where a beat should have been and would dip down...like the whole line would go down, be jaggedy and come back up. Our five year old finally siad "daddy turn your head and make more green line pictures.' I am just terribly upset that this man needs medical care and can't seem to get any.....

i'll be visiting family in Merriam Kansas between 06/15 and 06/18 but that is a long way from you...

Welcome and sorry you have reason to find us. I too get mindblowing ear pain when I fly sometimes. Once was reduced to sobbing thru landing in front of my three year old.. Luckily my husband was there to distract her. I really try and avoid flying now, especially alone. This is a wonderful place, I hope you find lots of answers!

So today it just feels like I am about to pass out but aparently I am not going to do that cause I have been like this for hours now. 1) stomach cramp in very specific place on left. 2) face tingly/numbish 3) hands stiff/tingly...hard to type and get them to do what I want. Feels like they might stop responding to me.. 4) hands anchy 5) head hurts 6) body feels like it is vibrating 7) shooting pains in left knee if I hyper extend it...which I am forever doing..you would think I would learn. 8) intermittantly when I stand it feels like someone is tapping me gently on a particlar spot on the top of my head... 9) unresponsive 'thinker" lol 10) ears keep feeling full and plugging upish 11) err. I forgot 12) eyes wont focues I have felt most of this before but the hands feeling like it is kind of hard to get them to do what I want is new... Doc will just look at me and say " gee, I dont know what to tell you." 60 mg indural la not doing the trick anymore. It was great for about 6 days and then it is like my body got used to it. Left a msg for the cardio... I really feel like my reclining chair at work is the only thing that allows me to work but just barely some days... Sitting with my feet down is as bad, and in some ways worse than standing. I think when I sit I am more still than when I stand and that is probably why.. Anywone else get the tapping on the head? hands feeling like they donet want to respond? I dunno...

When I dont feel good I usually have to lay on my left side. It also will alleviate the stabby chest pain. But I dont have MVP and structurally my heart is fine (no SVT etc.) Laying on my left will make me feel better.

Yep. Getting up for little ones in the night is usually a bad deal for me. I have had this many times. It can be especially aggrivated if I have to carry a child at night.

I have had this a few times since january, when it first showed up. I dont like it either and it luckily only has happened when I am sitting down so far.

I do computer stuff too and I find I have two choices. 1) try and keep up with others, but cant and thus make even more mistakes and have to spend three times longer fixing them or 2) just take 3 times longer to begin with, work gossip be ******. I have a chair with a foot rest and I, right now anyway, can not imagine working with out it...I wonder if I could honestly...but still I am so darn foggy and some days I simply can not think, at all!! I am ok for about 30 min to an hour in the am and it is then downhill from there. If I have to do meetings or anything with my feet down it goes from foggy/headache/etc to foggy/headache/pain/distress... So I schedule lots of online demo's where I can just talk on autopilot. lol well untill the room starts to spin anyway...

Hi Nina, I am thinking of you and your family. It will be ok.

As a kid I did (have had this since age of about 3). I ran from 95.? to on one occasion 104 for several days. Now I run 95.? to 102. (99 or more comes with swollen glands etc...but not a contagious sort of thing. Just my Dysautonomia freeking out.) I too have gotten the same diagnosis from the sounds of it and yes they are all basically different words for the same thing.

My husband is the domestic servant lol. He does the weekly vacuming and mopping but we have, er, different levels of cleaning style... The bending, stooping etc part of cleaning kitchens and bathrooms (particularly bathrooms) is the hardest for me. I tend to clean with the light dim or off. It means I dont do very good but if it is light then I really try and force my eyes to focus and see what I am cleaning and then boy do I get sick. Something about forcing myself to focus my eyes always does me in... I too have a stool in the kitchen so I can sit when I cook or between things when I am cleaning up a bit. I like the Orange clensor...it does not bother me. I tend to put things in piles as time goes on and then when I leave one room for another I can just grab the pile and go. I co-shower w/ my child where there is a seat for me to sit on. I sit to dry her hair in the hallway.

I get clorox wipes and bare feet and scoot around the bathroom every day or two (usually while I am waiting for my shower water to warm up in the evening). Kind of like skating. Then I dont have to actually mop, which is harder on me, very often. Clean the shower while I am in it. Anyone else??

well I was on the ball this am and forgot to take my beta blocker SO I am back to my old self today. Yuck. Anyway, it is this toxic feeling. Like there are so many orthostatic chemicals floating around that I am just buzzing and feel totally toxic. I used to feeel this way all the time. The BB helps with it. Also I was writing and noticed that feeling I get after try ing to grip anything...Hand tries to cramp and then more yucky feelings course over me...Like a toxic yucky wave... I think I can feel my blood flowing...lol And I cant focus...too hard. yucky. Anywone else get a toxid feeling sometines??? (and loss of typing ablity? lol)

I would not put too much infasis on heart rate. There are a lot of chemicals involved too. I know my heart rate can be at 80 or 90 sitting (instead of 60) and I will feel perfectly horrible. a 20 beat jump from that when I stand and I feel even worse. a 20 beat jump when it is beating hard makes me feel terrible and a 60 beat jump when I can hardly find my pulse is horrible in a different way. When I stand up and feel good, rare!, my heart rate only goes up 5 or 6 beats and then quickly settles back down to where it started. My impression is that most people increase >10 when they stand. I know that is what it is for me.

no small pumpkins in kid beds either...lol small pumpkins have a much longer shelf life if you leave them on the shelf!

Hello all, Just wanted to let you know that we made it home safe. I stopped and rested for an hour at my dads before driving my daughter and I home. We got home late but all is well. It was great meeting you guys!