gjensen

I am seeing a pulmonologist about my problems tomorrow. I am most troubled by a transition sleep problem, that I attribute to hypopnea and rising CO2 levels as a result. Then waking up with a breathing pattern to hyperventilation, but not as rapid as I would expect. This same issue can effect me any time during the day, but is most common early or late when I have fully relaxed. This effects me so much with my sleep that I hope I have my worst night ever on the night of the sleep study. I do suspect apnea episodes as well, but not as frequent.

Sounds good Rachel. I am very hopeful that this leads to relief for Tyler. And you. I think we need to send you a Mother of the year reward. Kudos for your cardiologist to stick it out with you. You have a good one there.

I did wonder if your tingling was from the blood pooling. I hesitated to say so, because yesterday being upright and moving around seamed to aggravate the burning sensation that I am saying is from the neuropathy. Maybe it was just a coincidence. I do not know that the shaking you described would be from blood pooling.

You certainly can do it. This stuff gets to me sometimes, but mostly I stay in good spirits. You will not catch me smiling when it is at it's worse, but I have too much to be thankful for not to smile at all. I have found that a sense of humility is a key point in being able to tolerate this well (for me). Recently that has been a little more challenging. I read somewhere that humility is not a virtue, but the root from which all virtue springs. This is not advice. Just something that has helped me. With this in mind I do not tend to beat myself up with this as much. Settles some of the inner struggle that I have.

I do not know what that is Goschi. I do get it to. Mine has become more of a burning sensation that is affecting all of both legs. More intense in the lower legs. How long ago was you tested for neuropathy, and how were you tested. Mine showed on a Qsart test and skin biopsy. They would probably would have been considered on the mild side. I had the Qsart test done at one place and the doctor seamed eager to dismiss the results. I had a reduced (abnormal) response in one location and no response in another. The rest were normal, and he still dismissed the results, which made me wonder why he did the test at all. The skin biopsy with another doctor was positive. It could be said that it was on the mild side. The samples are so small that I have a hard time believing that they can be considered indicative of the whole. I have only recently noticed the sensation associated with being upright. I noticed this yesterday and the day before. What I noticed was that it was worse after being upright.

Thank you Corina. I am still in reasonable spirits, so that helps. It has gotten to me a bit here and there. No sleep makes everything worse. Certainly not thinking clearly. Hopefully this pulmonologist can get me in for a quick study. I am still concerned that I will come out of this flare, just in time for a study. I would prefer not to go through this again. I had this before. Then it left me alone with just the occasional spell. This time is worse. The team of docs is as good as I think that I will get. Had to move on from the ones prior. A Duke neurologist, which I like a lot, finally decided that he would prefer that I see a autonomic specialist. It called it other than typical. I have a consult for that now. I like her. There is just to much to swallow immediately. I change so much. The cardiologist has seen this before, so he can help, but I would have to be lead. The GP is willing to do what I ask. Combine that with a Mayo trip, I hope someone can help me get stable. That is all I want right now. Stability, or some sense of it.

I do not know how low I get. I can get pretty low before going to sleep. My HR can dip real low while I sleep.

Thank you guys. Corina, I have come close, so I knew it was coming eventually. I felt it coming. The oddest part was coming back to. I have never felt like that. I am in a bit of a quandary concerning meds. I have high HRs and high BP, and then I have low HRs and Low BP. They are trying now, but they are throwing them at me like candy. Tomorrow and the next day, I will build a consensus of sorts. I do have a good team put together, but it is a new team. It is going to take them a bit to get a feel for how I present. I am throwing a lot on them at once. That is why I have not jumped on the medicine bandwagon yet. There is always that, but . . . I am consulting with a neurologist, and she will be a lot of help. I have consulted with her twice, but it is a lot to swallow in two consults. I think after the next one, and I finish getting her some records . . . . . She has ordered a lot of testing and re testing. I am going to Mayo May 5th. I will see what they do and do not do first. That is what I am trying to do more than anything. Hold on until then. It isn't far anymore. I suspect this sleep problem is contributing to this flare. It has to be. I will begin working on that Tuesday.

My poor wife has to deal with this. She will ask me something and it takes forever for me to get it out. You guys should see me writing a post. Especially when I am not doing well. I struggle sometimes. I always enjoyed reading, but I am having trouble being able to focus. What I have always enjoyed reading was not what you would call easy reading. I struggle now.

I am following to.

I figure that it will be what it is going to be, and it is not up to me. I will try to worry about the things I can control. I am human. I wonder. Then I set it aside. My youngest son graduates in five years. I want to see them moving on to the next step. Being their own men, and able to back their mother up. That is all I ask for. By the way. I am 40. I could have picked 30-40, or 40-50. 30-40 looked better, LOL.

I am not in your shoes, so I can only relate in a sense. I can understand your frustration, and your family's concern. I also get the emergency room docs that can only deal with conventional things. Is there someone that would be on call for the ER? Can information be put in your file about how to handle certain situations. I know that you have your file, but maybe they are scared to go that route. Maybe something that they have on file? I am grasping at straws trying to be helpful. I have an idea what it feels like to be in your situation and be a Dad. Keep plugging at it. We have to do all that we can do, and that is all that we can do.

Guess I have officially joined the ranks. I have had little flares of this and that concerning pain, but it seams to be here to stay now. This flare I am in has been especially rough, probably compounded by no real sleep in a week. Now it feels as if my stomach, groin, and both full legs are on fire. Well, maybe not that bad, but bad. Occasionally it is in my left arm. I have been having awful chest pains lately, and I am starting to wonder how much of it is nerve pain. The muscle twitching is back. Not here and there, but everywhere all of the time. The teeth chattering is back. The neurologist wants me to get another emg and eeg. Did I say that right? Ironicly my heart rate has not been bad, but my blood pressure has been low. I am on a bit of a roll right now. I have Gabapentin to take that was prescribed for the head symptoms, that the Duke neurologists still thinks it is CSF leaks. I has been suggested that I take it for this pain. I am not going to take it yet though. If I can handle it. The reason is this unremitting sleep apnea. the more tired I am, the worse it is. Then the longer I go without waking up, the worse off I am when I do wake up. Honestly, I am concerned with how far it will go if I do not wake up early enough. Then, I cannot describe how difficult it is to get my breathing normalized afterwards. Looking at heart monitor results fom six months ago, I see a number of misc. arythmias. None of them are serious, but I was interested to see the frequency. In two weeks I had six pauses of an average of 2.5 seconds. Numerous pacs, and pvcs. I could go on. None of them on their own abnormal in the sense that many people have them. It was just the qty that interested me. I was also interested to note that almost all of the pauses were at night when I would have been asleep. I wonder how common six pauses is in two weeks. Then I looked at the echocardiogram from the same time frame. I have thought that I have occasionally caught the sound of regurgitation. On the test results I have regurgitation on all of the valves, labeled mild by each. No one told me. Maybe no big deal, but would have been nice to know. I wonder if this is some of my heart pain. I had no heart pain then. Sorry for the ramble. I am very dizzy today. Just not with it. Probably the no sleep. I got two hours this morning. I fully fainted yesterday for the first time. I was headed to the bed, so felll towards the right thing. No one was home, so I did not scare anyone. I am not a fainter. I have played with the idea along the way. There is my update.

I would call my BP unstable. I only see the extremes that you refer to, on rare occasion.

This is a good warning and reminder. It is easy to do.

Katy, I just wanted to mention that I have been paying attention. I am rooting for you to.

Goschi, I had no sleep concerns before the onset of my dysautonomia. I believe that mine comes with this. It would be nice to get some symptom relief by managing one. I hope that for you, you will see much improvement. I went back and looked back at a thread of reports from a monitor I wore six months ago. There is a number of misc. arrhythmias in these reports. It was interesting to note that there was a lot more at night when I would have been asleep than in the day. I see the pulmonologist Tuesday. I want this symptom to give me a break, but I want to have it the night of the sleep study. I really need some help with this. Goschi, I would recommend visiting a sleep apnea forum. Most on them have obstructive sleep apnea, but there is exceptions.

Yes. Frequent chest pain. Upright or down. Also a heart specific pain. It can hit suddenly and hard to. No cardiovascular causes found. My heart is hurting as I write this.

I hope so to.

Don't hold me to anything yet, but it looks like the C02 would have to get very high before the 02 starts dropping. Part of what has me wondering is lately being more tired, I am having more of a problem. Especially early in the morning. A change in our respiration can affect how much CO2 we exhale. A response to high CO2 is hyperventilation. Often starting by a need to deep breath, sometimes rapid breathing. Probably not new to a lot of people, but this is new to me.

Anyone else here have this? How about Transition Sleep Apnea? I think I have this figured out, but I am concerned about getting properly diagnosed. I intend to go prepared. I was able to get the appointment for Tuesday. That is a long ways away when you can't sleep. This seams that that this will be a difficult type to diagnose and treat. Go figure. I have been diagnosed with small fiber neuropathy. Anyone have any good information on how it relates to these types of apneas. What is happening to me is that my breathing drive becomes too depressed and eventually stops during the transition. I am startled awake with my CO2 levels too high. This is why I have so much trouble breathing afterwards. My body is trying to get rid of the excess CO2. I do not even have to go to sleep for this to happen. All I have to do is become especially relaxed. I wonder how much high CO2 levels is the root of our breathing problems. I have not looked into it, but I suspect that we experience changes in our breathing process that lead to rises of CO2. Then we respond by trying to rid ourselves of the excess. I am not speaking of orthostatic shortness of breath. Recently I was going through some tests. I noticed two of three blood tests had high CO2. One was normal. I also noticed high CO2 levels being a cause of high CSF. Which I have. I could go on and on, but it is pointless. A lot of it would be speculation. I am going to do some digging. I took a long break from doing any research. Had grown wary of it when I was getting myself diagnosed. If anyone has any tips, I would appreciate it. I would like to get some sleep. I think I have about 15 hours for 4/5 days. I think the more tired I am, the worse it gets.

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.

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".

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.

I was thinking the same thing. We need one of him in every region. Congrats on getting there.