Nothing Makes Sense

[gjensen]

I have been whining about my breathing problem and getting to sleep. Yesterday morning I drifted off with no problems after the post. I did not call the doctor.

I was especially symptomatic yesterday (probably lack of sleep). Decided to try the newly prescribed Beta Blocker. Initially, it gave me trouble breathing and I had a mini panic attack. I do not know if I am having some irrational issues with meds, or have become that sensitive to all of them.

After my spell subsided, I actually liked the benefit of the Beta Blocker. I felt calmed down, and my HR was good and so was the BP. Maybe just a little low, but nothing to be concerned with.

Last night, my sleep problems kicked back in. Worse. The more I tried the worse it got. The last time, when I came to, I could not get my breathing back. It just took way too much effort for much to long. It is not shortness of breath, but it feels like I cannot get my lungs to work. Something about drifting off to sleep messes me up. After I got where I felt as if I was going to pass out, I decided to try and get some help. Was a little nervous about fainting when every time I would go to sleep, I would quit breathing.

By the time I got there, I had normalized. What struck me was how normal my HR was. I did not go in and went home. Walking around the house, my HR was 75. Never saw it above 90 even after bending over etc. I have never seen my HR walking around at 75. I was up for a little bit. I got down and back up to check it. A poor man TTT. 65 at rest, and 85 upright.

I feel like crap and want to go to sleep. Honestly, I am nervous about it.

I am starting to feel like I am going bananas.

[IceLizard]

Hi gjensen,

Which beta blocker are you on? If it is non-selective I think it may also slow your breathing as well as your heart rate. I have trouble taking certain ones.

[gjensen]

Other than my initial reaction, I feel like I tolerated it well and even benefited from it. I would hate to pay my dues by having a similar reaction every time I took it.

This sleep thing is what is getting to me. I should not have even posted. Other than yesterday morning, I have not had any real sleep in quite some time. I am not thinking straight. I tried drifting off again, and the same thing. Wake up unable to "get any air". Then it takes so long to "normalize".

It is still interesting how "normal" my HR is this morning.

[Katybug]

Gjensen,

Hi. I really think you're going to have to get a sleep study so you can be monitored during these episodes. It sounds pretty serious if you truly can't get your lungs to work. The shortness of breath I experience from POTS feels more like I'm not getting enough oxygen but my lungs are working fine...actually overtime. I'm worried for you as I can't handle it when I don't sleep enough and it sounds like this issue is becoming a downward spiral. Take care.

[sue1234]

Does this happen to you when you try to sleep sitting/propped up? I was thinking about possible Chiari or something similar that maybe your skull/brain shifts when lying down.

[gjensen]

Thank you Katy. I wish it was just shortness of breath. I do not enjoy that either, but this is especially tough. I have seen my Oxygen levels at 89 and 90 the last couple days. I am able to get it back to normal as I work at it. I do have to be careful not to hyperventilate. I have done that, it just makes matters worse.

I am concerned about a downward spiral to. I have been on a bit of a roll lately.

I did find a good article on sleep apnea that includes transition sleep apnea, which seams to fit me. I will post the link soon. it might be of interest to someone.

Looks like a possible treatment for me would be oxygen. Not the typical CPAPS and VPAPS, or whatever you call them, LOL.

Sue, I am a bit propped up. I hope it is not the position, because I am only able to sleep in one.

I did request a referral today, and hopefully it will not take long.

[Katybug]

When I had my sleep studies, I went to one of these places that is supposed to be more like a hotel or bedroom setting. It definitely helped my comfort and ability to fall asleep. But, the sleep medicine doc was a joke. I was later referred to a really good sleep med doc by my geneticist who helped me much more. The other guy dx'ed me with depression! He was a joke. There were actually significant findings on my studies when I took the raw data to the other doc that the first guy never even mentioned. My point being, please try to find a sleep doc that isn't just trying to sell pills and cpap machines. The second doc that is really good is a pulmonologist and a sleep med doc. I don't know if they usually go hand in hand or not but I just wanted to let you know in case it helps you get to the right doc.

[gjensen]

When I had my sleep studies, I went to one of these places that is supposed to be more like a hotel or bedroom setting. It definitely helped my comfort and ability to fall asleep. But, the sleep medicine doc was a joke. I was later referred to a really good sleep med doc by my geneticist who helped me much more. The other guy dx'ed me with depression! He was a joke. There were actually significant findings on my studies when I took the raw data to the other doc that the first guy never even mentioned. My point being, please try to find a sleep doc that isn't just trying to sell pills and cpap machines. The second doc that is really good is a pulmonologist and a sleep med doc. I don't know if they usually go hand in hand or not but I just wanted to let you know in case it helps you get to the right doc.

Thank you again. That is a concern of mine. I have went to one, but had no event. That is why I decided to pursue tis further if I flared again.

I will not go back there again. They were exactly what you described. An ENT "getting into the business". I should get my results from them and review them, even that I did not have an "event".

[jpjd59]

Have you been tested for Lyme and/or Babesia? My daughter has major sleep issues and breathing problems and the doctor said that this is the cause of her problems.

Just a thought . . .

[Psalm 23]

Hi gjensen,

I'm sorry you are having to deal with this. Feelings of shortness of breath and lack of air are frightening. Katie is absolutely right in recommending you find a qualified sleep specialist and have a sleep study done. A Pulmonologist is usually going to be the best qualified doc to see. Its sounds as if cardiology studies may be needed as well. Hopefully you don't have any underlying cardiology issues responsible for any of this. I hope you find answers and relief.

Janet

[IceLizard]

I agree with the other posters. The beta blocker may not be helping the breathing issues, but having your breathing stop while sleeping is still not normal while on them. A sleep study would be a good idea to help determine what is really going on when you try to sleep. I hope you find a good doctor who can give you some answers so you can get some rest!

[gjensen]

I found this link helpful. I suspect the transition sleep apnea.

http://www​.ncbi.nlm.​nih.gov/pm​c/articles​/PMC341733​1/

I was thinking back to having to be careful not to hyperventilate after, and it seams this is a typical response. Note the information on CO2 levels.

I only took the beta blocker once, so I cannot blame it. I wish that I could.

jpjd59, I have had some Lyme testing only. Just blood tests. I have considered pursuing it further. Mostly because I got bit by so many ticks last Spring before all of this kicked in. I spent a lot of time on some sea islands, and no matter what I did, I would come out with them. I would bet that I have had a hundred ticks in the last few years. I always considered them part of what I liked to do.

Psalm, first I have been thinking about you and looking forward to you getting better news. I have not said anything because I did not know what to say.

And thank you for the kind words. People like you make this an easy place to visit. You were helpful to me when I first visited.

I do not think that the root of it is cardio, but I believe it becomes involved. I just came off of a monitor, and wish the timing had been better. I would have a hard time getting one now.

And you are right, those feelings are no fun. This darn disease has shown me that I am not Superman. I get scared just like everyone else. The actual event is troubling, but it is the after that bothers me the most. The more I try, the worse it gets. It seams to take forever to normalize.

Fortunately, "my paperwork" has been forwarded to a pulmonologist that also runs sleep studies. Hope it will come soon. My luck it will fade by the time it comes. Good, if it does not come back.

IceLizard, I always appreciate your insight.

I am going to try to take a nap. I am not looking forward to it, but I need it.

[castronovo112587]

Beta blocker made my breathing problems wayyyyy worse. It needs to be a selective beta blocker. That is way better for people with breathing problems then non selective. I however cannot tolerste any meds at all including any type of beta blocker. In addition the bets blocker gave me insomnia which is a known side effect. I did not sleep for 48 hrs one time while on it and had a hard time sleeping every night.

[Raisin]

I just wanted to say I feel for you. I was waking at different times of the night and having to gasp for air. It was like everything regarding breathing had stopped. Luckily, it seems to have subsided for now. It is scary when it happens, isn't it? Best of luck with the sleep study! I hope they can see what is happening!