gjensen

Bellgirl, I appreciate your support. No meds for it. Not now. Not yet. I have dodged the meds for two reasons. Mostly I have bad reactions to what I have tried. Also that I was waiting on Mayo to get some kind of consensus. The neurologist there thinks that the autonomic neuropathy does not explain all of my symptoms. I am waiting on the results of some additional testing that I will get next week. I dread the trip, but I a looking forward to getting it over with. The local docs do not get it, and will not get it. I may do some more digging around. I may settle, because they do listen. It seams that they will do what I ask, as long as it is safe of course.

That was hilarious. Mostly because I can relate. Like you, I have said that they will know when it is obvious. I am quite familiar with the surges, and they are no fun. Knock on wood, I have not had one in a while. I would like to know how the appointment goes with your rheumatologist.

No SSRIS for me, though I am considering one. I am getting a little break from it, and it has only been situational today. Kind of funny when it is 95 degrees and someone asks you if you are cold. I have not attributed it to high epinephrine or nor epinephrine. Early on I did, because I was in a pretty hyper state. I was also getting it after surges. Kind of like panic attacks where I was not panicking. I have not had any of them in some time. Knock on wood. Now I believe the two are unrelated. Now it is most pronounced as I relax for sleep, or after a swallowing motion. Swallowing tends to trigger it. Especially after a deep swallow. It seams and feels neuromuscular to me. That does not mean it is. It is the best that I can describe it though.

I cannot peak for the others, but I do not have what I understand to be bruxism. I understand bruxism as clenching teeth etc. I chatter as if I am cold, but I am not cold.

I have felt this way after being up for a long time and then lying down. I a not saying that it is, but it feels like I get sudden surge. It takes a bit to recover followed by a nasty headache.

Raison, I do not seam to fit anywhere and I seam to fit in everywhere. At least I am in good company. It is a management problem when I am all over the place. I get real low HRs and real high HRs, for example. I do not want to lower my lows, but I need to settle my highs. Pink I have never had my jaws snap shut. Maybe that is next. There is always something new. Bellgirl, I get the limb jerking too. It is ore annoying than anything. It is funny when it is late and quiet and I startle myself though. No I do not want any nerve pain near my mouth. If it is anything like bad toothache, I do not want anything to do with it. I wish that I had went somewhere with a complete lab for a full work up, but we are not done yet. They found some things and are going to look into something that no one else did. We will see. At this point, I think I am ready to try to manage this better. BigSky, I get it with the tremors to. I know when they are going to conclude because it always comes at the end.

I was reading (watching) something not long ago and it dealt with our fluctuations in HR etc. during sleep. It attributed these things to fluctuating levels of adrenalin etc. Pain management, beta blockers, and clonidine were mentioned as treatment options to improve the sleep of patients with these problems. I do not fit in this crowd. My sleep problems are with the transition both ways. My sleep transition problems can be either hyper or hypo. Once I have fallen asleep (less occasional apnea episodes), I seam to do fine. The biggest issues after I fall asleep is a reduced breathing drive (more than it should be), and my HR has gotten very slow. Not long ago, I had the opposite problem. Maybe next month it will be different.

Last year at this time, I started going downhill. I fell off the wagon entirely about 9 months ago. Since then I have went through spells where it gets real bad, and spells where I think that I can get better.

Thank you Raisin. It is like that. It does what it wants to and when it wants to.

Thank you Rachel, it is annoying. Especially when your family starts noticing. It makes me wonder what else is going on. Nothing different in medication. I had this start early into this, but it went away. Then it came back, but only when I was transitioning to sleep. Now it is here and hanging out. For the first half of the day to day, it was not doing it. It is now. I will talk to the Mayo neurologist about it when I go back next week.

I get your description. I feel like I am clinching my teeth, but I am not. Almost like the muscles are tired from doing it.

This is how I wake most days. I am dreaming and all of a sudden I am wide awake and I think, why am i awake.then a minute will pass and the fun begins. Have you found any help for it? No help yet. I thought that Clonidine was helping, and maybe it was. This stuff is so up and down. I have a hard time being certain. It may be time to up the dose. I have speculated that it was a neuro endocrine issue. I wake up feeling fine and normal, and within a couple minutes I feel very uncomfortable. Very over stimulated. The chest pains kick in etc. If I get up and move around too much, I can get flooded and my HR has went as high as 220. 170 is more likely. It isn't just the HR though. It is a number of things. If I wait it out, until I settle, I am much better off. The irony is that I can go to the other extreme. I do not get this flood of sorts, and feel suppressed. My BP will be low, and my HR subdued. Even walking around it will not get over 95. Then it as if a switch goes off, and I have a huge amount of trouble breathing. I know something real is happening, or not. I can watch my O2 go from 97-98 to 89-90. I never have this happen when I wake up and get overstimulated. It is one or the other. Mostly the former. I wonder about taking anything for the one issue, when I can go the other way. I am nervous about taking anything that would reduce my drive to breathe.

I have had this off and on for some time. I am more likely to have the issue trying to go to sleep. It has occurred at other times. The last couple days I have had issues with it all day. My jaw muscles feel tight, and any motion triggers a chattering motion. For example, a swallow will trigger it. Something else that might be related is as I transition to sleep I get twitching throughout my face. Does anyone have any ideas about this symptom? This chattering is annoying. I wonder if it is not getting worse.

It sounds like it some "misfiring" in the transition to wakefulness. My transition problems seam to come after I wake up. I feel fine initially. For a moment. Then the fun begins. Cortisol levels are the highest in the morning. I imagine it varies with your sleep schedule instead of being set at a particular time. For many 4am may be a low point. Maybe not for you.

TCP, I wish you well also. Thank You.

I hope that this means progress. Good luck. I look forward to hearing good news. I wish that I had went somewhere to get that thorough of a work up.

I want to go back to work. There is no way I could do what I have done. It would be dangerous. Literally. I have applied for SSI, but at the same time, I keep trying to think to what I might be able to do. The truth is, right now, nothing. I would not even be able to get there. I can't drive. I would need to be able to lay down much of the day. The problem is that sitting is as much of a problem as standing. Half of the time even laying down is a problem. I am hopeful. I keep getting spells where I think, "I can do this". Then I descend into a flare where I cannot see straight again. It takes me two and three hours in the morning to level out. I always end up getting into trouble if I try to move around too much too soon. I would do better adapting, if I could level out. I am still ever changing. There is always something new. My hope is that by the end of the summer, I will be stable enough to figure something out.

I could have voted for most of the selections. I get such a variety of them.

Chest pain can be one of my most bothersome symptoms. When it is at it's worst, it is very difficult to tolerate. The intensity waxes and wanes, but it is always there. I get a variety of pains. One I am pretty certain is over restriction of my aorta. When I am in the most pain, it throbs the most. It can put on quite a show. This pain radiates to the center of my back, rises from below my breastbone, spreads to my heart, and can radiate into my left arm. It can be very painful. Some of my chest pain, I believe is nerve pain. I say this because it is accompanied by a burning pain in my feet, legs, stomach, and my chest. I get some sudden sharp, dull, or crushing pains centered on my heart that I have never come up with a theory for. Of course I get the orthostatic chest discomfort. I have had a pretty thorough cardiac work up. Other than mild regurgitation noted, everything has come back normal. Except for a number of misc. arrhythmias. I have been given no answers as to why I am feeling what I am feeling, only that they are calling it angina. I believe the majority of it is hemodynamic fluctuations, uneven constriction, and compensatory over restriction. Some of it being nerve pain. I think figuring it out is a matter of exclusion, which means a thorough cardiac work up. A lot of our clues is in what helps or doesn't help the pain. I have recently come to the conclusion, thanks to a friend, that managing pain is important for us. Our bodies do not handle stressors very well. It is an important part of finding level ground. After a thorough cardiac work up, I think we should be talking to our doctors about what would help the pain. A way to manage it.

I imagine that it is frustrating, but do not give up. You are obviously very bright, and have a lot going for you. You have a bright future, even if it does not look that way right now. Just take it day by day. Deal with it as it comes. Do what you can do, and avoid what you cannot. Don't try too hard concerning the relationship with your boyfriend. I know there is a lot of emotion tied up into it, but you are where you are. Right now. He has to be able to handle that. That is up to him. Not you. Right now, your concern is getting better. I am not saying to not try to understand where he is coming from etc. Just remember and realize that your priority is to get better. A lot of emotional strife is not going to contribute to you getting better. I think that you are going to get better, and you will have been better off for this experience. As bizarre as that sounds. Don't worry abut the future. That is too much and out of the control of people that do not have the challenges that we do. We think that we have some control. I did. Not anymore. Only concern with yourself with the future, as far as knowing that your condition will improve. I am sorry that you have to go through this. I wish that there was something that I could say that would change things.

I hate that your experiencing this, and I can relate. I have some sort of transition issues every night. The breathing issues in the transition go from spells of being mild to major. When it gets bad, I can go days without sleep. It seams that the more tired I get, the worse it gets. I have trouble with my transition to being awake also. There is a lot of physiological changes that happen in the transition from wake to sleep, and sleep to wake. It does not surprise me that those of us with autonomic dysfunction would also have these problems. Like yourself, just getting real tired can trigger it. It seams that autonomic problems and sleep transition is not widely understood. It is difficult to get it identified by a professional. I suspect that some of us have mini panic attacks in the transition. Not that we emotionally panic, but the body does. Also there is a type of transition sleep apnea, that is central in nature. We enter a period of subdued breathing drive, and our CO2 builds up. We are startled awake, with a need to deep breath. The deep breathing can lead to hyperventilation. The deep breathing is a natural response to the higher CO2 levels. Bipap with O2 helps with this type of apnea. The problem for me has been getting it diagnosed. I have never been able to get to a sleep study while in a flare. A home study might be in order for the next one. We will see. Investigate these things for yourself, and discuss this with a doctor. If you have the problem every day, you may be able to present during a study. It would be helpful to find a sleep specialist that is familiar with autonomic dysfunction. Make sure they take you seriously. You might be able to get some help with this. I know that I am not giving up. It is an awful symptom to have. If you do not have one, get a oximeter. It will be a way for you to check it when you want to. I have found that my O2 is regularly dipping to 90 in my sleep, but they will not call that anything until it gets to 88. I am sorry for the rambling post. I have been trying to figure this out myself.

Thank you for the articles.

It is hard to know. So much carries so many common symptoms. I am figuring on re evaluating after Mayo. If I suspected it, I would pursue it.

I read the article. That is interesting. I have looked into the possibility of EDS for me, but does not look like that is my concern. I have had a couple things come up that made me think to it, but right now, I think it is a slim chance that it is at the root of my issues.

I just wanted to throw it out there that it took a few weeks (I think maybe 4) for the complete write up from Mayo (includes all of the testing, testing interpretations, doctors notes/impressions, treatment plan, recommendations) to get put together and sent out to me and my doctors. An EDS specialist I saw in Chicago who does a thorough write-up said to allow 3-4 weeks for his report. If your doctor knows this, maybe that is why he scheduled it a ways out from your return. If when I am in a doctor's presence, I do not feel respected and as though my concerns are being taken seriously, it doesn't work for me no matter how "good" the doctor is. What I've noticed is I do well with confident (but not arrogant) doctors. They view complicated patients as a challenge rather than a threat and are not intimidated by patients educating themselves or asking questions whereas unconfident doctors tend to find this type of patient threatening. Also, confident doctors are more likely to tell me they don't know something whereas an arrogant or "feeling threatened" doctor is more likely to make something up or brush off my concerns than admit not knowing. He does not know that, well . . . I do not think that he does. He commented that he had not referred somewhere there. I do appreciate the objective view. I really do. I have become quick to make judgments of this sort. Like many, I have had trouble finding someone that I feel good about. I keep thinking that I do.