At The End of My Rope

jbn3boys wrote:

Madalot wrote: Sometimes you have to reach very hard to find something positive to hang on to. Waiting for something to get done frustrates me beyond belief, but I know you deal with that yourself so you understand it.
.

Yep! I had an "anomaly" last night, and had to have someone else point out to me that it could be seen as a "good thing". Yep, we reach for it and grab it...while we wait....

I was happy when my doctor said she could see my variable breathing pattern every 60-90 minutes. Validated my complaint about waking up so much. At least "something" is going on.

All the cardiac testing is frustrating. I've done two of the three tests he wants done. I wore the Holter monitor for 48 hours and during that time, I had several episodes of palpitations and chest pains, one of which was really severe. Scared the crap out of me.

I got the call today saying they saw NOTHING wrong on the test. It's good news that the test said everything was fine, but it doesn't explain those episodes.

So, I do the chemical stress test tomorrow and see what happens with that. I suspect that will be good too so they'll say everything is fine. Then what in the heck is causing these episodes???

Story of my life!!!

Stay the course, and keep making changes.

You need a vision of being successful in the end at the end of a long challenge.

And as I say to others, make sure you sleep on your side, and dont eat after dinner.

Check into reflux, which could cause further problems, along with food allergies.

You know things are rough when you almost hope they'll find something wrong just so you can have some answers. I was like that about my sleep issues. I can't begin to understand what you are experiencing with you multiple issues to deal with. I had a friend who had a paralyzed diaphragm from having a nerve cut during a thyroid surgery, it caused her to have apnea and she never did commit to using her machine, and her doctors certainly never tried to optimize her treatment and help her make it work. I admire your perseverance in making this the best it can be for you.

If the cardiac tests don't show anything, tell the doctors that a negative test is not an answer, it only tells them what it is not, and ask them to keep on till they find the answer.

DaveCarolina's comment on reflux reminded me of my own GERD and small hiatal hernia. There is something about when the food (or air) is moving from the bulge (hernia) in the top of the stomach past the diaphragm on into the stomach that feels like palpitations. It's a few small "blips" accompanied by a pressure type sensation. Just wondering if a paralyzed diaphragm in any way affects the way food feels passing from the esophagus into the stomach. Wouldn't hurt to ask your doctor, although it seems when they don't know, some grab onto any explanation instead of looking further, but I know you won't let THAT happen. Hope you have a good day. Thinking of you.

DavidCarolina wrote:Check into reflux, which could cause further problems, along with food allergies.

I've had reflux for YEARS and currently take medication for it.

kteague wrote:You know things are rough when you almost hope they'll find something wrong just so you can have some answers. I was like that about my sleep issues. I can't begin to understand what you are experiencing with you multiple issues to deal with. I had a friend who had a paralyzed diaphragm from having a nerve cut during a thyroid surgery, it caused her to have apnea and she never did commit to using her machine, and her doctors certainly never tried to optimize her treatment and help her make it work. I admire your perseverance in making this the best it can be for you.

If the cardiac tests don't show anything, tell the doctors that a negative test is not an answer, it only tells them what it is not, and ask them to keep on till they find the answer.

DaveCarolina's comment on reflux reminded me of my own GERD and small hiatal hernia. There is something about when the food (or air) is moving from the bulge (hernia) in the top of the stomach past the diaphragm on into the stomach that feels like palpitations. It's a few small "blips" accompanied by a pressure type sensation. Just wondering if a paralyzed diaphragm in any way affects the way food feels passing from the esophagus into the stomach. Wouldn't hurt to ask your doctor, although it seems when they don't know, some grab onto any explanation instead of looking further, but I know you won't let THAT happen. Hope you have a good day. Thinking of you.

I'm relieved that all the cardiac testing came back normal, especially considering my family history. The woman that worked on me this morning with my stress test said that the chest pains I experience COULD be a result of too low an oxygen level at that moment. She said something about blood vessels constricting?? if you need oxygen and that could be the pain I am experiencing. Hmmm...we go back to respiratory with that.

However, here's where everything stands now:

Cardiac: Testing done and everything checked out okay.
Gastro: Appointment with Gastroenterologist on 3/17. Probably will end up doing an endoscopy. Blech.
Respiratory: Sleep Study requested and I'm waiting on the scheduling. Plus, RT contacted me early this morning. Poor man took seriously ill and has been in the hospital. He's going to be back to work Monday and has offered to come here and try different settings on the ventilator -- dial wingin' if you will.

So, I think some of the issues could be gastrointestinal, but definitely still dealing with less than ideal ventilator settings. Sleep study and RT help will hopefully get that better soon.

It's got to be a relief that the cardio stuff all checked out a normal. One less potential problem to deal with---even if that does leave you back at square one.

I think doing the sleep study---even on a different vent---is a good idea: Maybe having the data and a professional watching you sleep will shed some light on what is happening at night. One can hope so at least.

Thinking of you and hoping you'll get some answers about how to make the nights more tolerable soon.

Madalot wrote:

DavidCarolina wrote:Check into reflux, which could cause further problems, along with food allergies.

I've had reflux for YEARS and currently take medication for it.

Just a thought, I've been taking RX drugs for reflux for years also but recently in the past year Prevacid and some of the others havent' been working so the Dr put me on an old tried-but-true RX for Protonix and that works fine. I've even been able to reduce the dosage to every other day or less. So maybe what you're taking isn't doing the job anymore and your body needs a change?

robysue wrote:It's got to be a relief that the cardio stuff all checked out a normal. One less potential problem to deal with---even if that does leave you back at square one.

I think doing the sleep study---even on a different vent---is a good idea: Maybe having the data and a professional watching you sleep will shed some light on what is happening at night. One can hope so at least.

Thinking of you and hoping you'll get some answers about how to make the nights more tolerable soon.

Thank you. I wake up a lot. Last night, I went down at 11:30, woke up around 1:00, 2:30, 4:10, 5:20. These are the awakenings I'm sure of, but there could be more. I was getting up at 5:30 today to be at the hospital at 7:00 for the stress test, so I didn't bother going back to sleep at 5:20.

I guess on the bright side, while I wake up a lot, I am able to turn over and go back to sleep fairly quickly. I fall asleep at the drop of a hat, day or night. I just don't stay asleep more than 1-2 hours.

DoriC wrote:

Madalot wrote:

DavidCarolina wrote:Check into reflux, which could cause further problems, along with food allergies.

I've had reflux for YEARS and currently take medication for it.

Just a thought, I've been taking RX drugs for reflux for years also but recently in the past year Prevacid and some of the others havent' been working so the Dr put me on an old tried-but-true RX for Protonix and that works fine. I've even been able to reduce the dosage to every other day or less. So maybe what you're taking isn't doing the job anymore and your body needs a change?

Anything is possible. I started out on regular Prilosec years ago and took it for quite a while. That stopped working and I was changed to Nexium. Nexium never stopped working for me, but it was doing a horrible number on my wallet! The doctor and I talked and I changed back to Prilosec (Omeprazole) and supplement that with Pepcid AC (Generic). As far as my old reflux symtoms, the two seem to be handling it.

I'm sure this will be discussed at length with the gastroenterologist in two weeks.

I'm so glad your cardiac testing came back okay! Especially given your concern about family history. It's nice to know that something (heart) is working as it should! Even if it doesn't explain anything. Maybe that nurse today was on to something with the idea of low oxygen. Here's hoping the respiratory folks will be able to figure out just what to do to get you the best O2 saturations, day and night, that you can get!

I'm so glad you are keeping us updated on how things are going! Thanks for hanging out with us, even when you are at the end of your rope! (which, I hope, you aren't quite at the end any more...maybe a little farther away from the end? I hope!)

jbn

Madalot, as a relative newcomer to the forum it is very humbling to read your posts and those of others with multiple health issues. This is a wonderful community and I am glad to be part of it. My thoughts go out to you and I hope you find solutions to some of your problems.

Sweet kitties!

Mad, I don't post often; but I do read your posts, I care how you are doing, and I'm sending you my best wishes.

Best wishes, Maddy. I think of you often.

jbn3boys wrote:I'm so glad you are keeping us updated on how things are going! Thanks for hanging out with us, even when you are at the end of your rope! (which, I hope, you aren't quite at the end any more...maybe a little farther away from the end? I hope!)

Yep, I'm more towards the center of that rope now. Doing something (or having a plan in motion) makes me feel more in control and less hopeless. I still feel lousy and am not happy about my sleep, but at least I've made the decision and started the process to the study.

amelia76 wrote:Madalot, as a relative newcomer to the forum it is very humbling to read your posts and those of others with multiple health issues. This is a wonderful community and I am glad to be part of it. My thoughts go out to you and I hope you find solutions to some of your problems.

Sweet kitties!

Welcome Amelia76! Thank you for the good wishes. I appreciate it very much. Those kitties aren't mine, but I do have 5 precious ones. People here seem to like "sink kitties" and I think the avatar is associated with me, so I keep using it most of the time!!

M.D.Hosehead wrote:Mad, I don't post often; but I do read your posts, I care how you are doing, and I'm sending you my best wishes.

Thank you. It means a ton to me to know so many read and care.

Robespierre wrote:Best wishes, Maddy. I think of you often.

Thank you. It really means a lot to me to hear this. It helps me get through, especially when I'm in that "dark place" that I hate going to....

Madalot wrote:
Thank you. It really means a lot to me to hear this. It helps me get through, especially when I'm in that "dark place" that I hate going to....

Then when you get to that dark place again (if you like me, it's when, not if) then come back here and re-read all of our well wishes! We will still feel the same way, so even if the day is different, the sentiments reflected here are not any different!

jbn

jbn3boys wrote:

Madalot wrote:
Thank you. It really means a lot to me to hear this. It helps me get through, especially when I'm in that "dark place" that I hate going to....

Then when you get to that dark place again (if you like me, it's when, not if) then come back here and re-read all of our well wishes! We will still feel the same way, so even if the day is different, the sentiments reflected here are not any different!

You're right there! Hopefully between doing the study on the vent (hopefully soon, but I haven't heard anything yet - argh) and the fact that the RT has offered to come to my home and help me, I won't be heading to the "dark place" much anymore.

One can only hope, right?