gjensen

I had a break from it, but it is back. It feels as if my automatic sleep effort becomes very depressed and my lungs empty. I do not know what it is, I am half asleep. But I cannot sleep. As I drift off, I quit breathing and my jaws begin to chatter. I am not real excited about this. The last time that tis got going, I would occasionally wake up later into the night not breathing and have a horrible time getting it going again. I am considering a sleep study again, but what good would it do if I cannot get to sleep? Also it is not predictable when I will have these spells. I could do ten of them and not catch it, but when I am in this pattern . . . it is bad. I will admit that it gets a bit scary. I do not get worked up anymore. You know, it is what it is. Still it is not fun waking up unable to get your lungs filled up. Anyways. Anyone have sleep transition problems accompanied by teeth/jaw chattering?

I have dry mouth and eyes. I tested negative for Sjogrens. Doesn't mean a whole lot, I do not think. It would not hurt to have both investigated. I did. Positive for SFN and negative for Sjogrens. As Soskis said, it seams that it can come with what we know already.

Be careful with the cheaper wrist models. They are notoriously inaccurate. I started with one, and it did start reading bad numbers. I bought a better one, and it is better, but it is a little off. I know how much off though. I do not use them a lot anymore. I have gotten where I know about where I am at by how I feel. I may use it if I feel a little out of line, and if the result is out there . . . I will double check the result manually. They are handy to help figure out where you are at, and what triggers you getting there.

I am wondering how much weight she has lost. From where to where. I am also wondering if her system is not running slow. My issue initially was swallowing, but then my system got so slow that I could not get anything in me. I would literally be full from the day prior. That was not good for the appetite. Another thing I did was replace water with coconut water etc. I would get a 100 calories instead of none. I do not know if your daughter would like it. My wife does not like them, but I think they taste pretty good. They were especially refreshing to me then. Not as much now. I do not like the flavor of some of the Ensures, Boost, etc. There is some I like or can tolerate though. Maybe there is a brand with a flavor that she would like. I also made a chocolate peanut butter milk shake. I took the carnation breakfast,added it to the milk, through a scoop of body builder powder in, made a chocolate milk shake with it, and added peanut butter. It was tolerable, and more sugar than you might want, but it had a lot of calories. I needed the calories. I could not afford to burn what little I was getting. I definitely took my vitamin everyday. Of course I do not know why, and am not a nutritionist, or a doctor. I can only share what I did to fight the issue I had. I was trying to achieve small victories. It is good to hear the doctors taking it seriously, and digging in to know why, and want to do something about it. That is a positive thing. It is a lot easier to address a problem if the problem is known. It is good to have a doctor want to cover all of the bases. I wish your daughter well. You as well. I am a parent to.

I enjoy the coconut water, and it was a big help to me early on. It is not cheap, so I have cut back on it. It is still part of my day. Generally one 11oz can.

I lost a lot of weight going into this. Way more than was good for me, and it was pretty fast. I did have a variety of GI symptoms that came and went. I could not suggest possible causes etc., but . . . Ensure and the equivalents helped me turn it around. They are pretty calorie and nutrient dense for such a small portion. I have been able to gain a third of my weight back, and my system seams to be in better shape. I can eat more now. I am still concerned about muscle loss, I wonder f I have not lost more than what can be explained by any deconditioning.

I am sorry you feel that way. I also wish that I had something constructive to say or contribute. I had to look it up to see what you were talking about. If you have any doubts along the way, you can seek a second opinion. Right now, in the mean time, I would be asking the doctor if there was another option that might be more tolerable. Maybe an option to help you tolerate it? Maybe, someone on here would have some insight. Keep your head up. It will not always be this bad.

Confused guy, that does not offend me. I played with it when I was a young man, and have since wondered if it would help me sleep. Some things help me get to sleep, but then almost to the dot . . . two hours later, I am wide awake. I have trouble getting through the transition to. I would not even know where to get it safely now, and it is not legal here. I doubt I will go that far, but if someone benefits, good for them. I do not see it more offensive than much of the stuff the prescribe to us. Another thing I wondered is how could we know what it would interact poorly with or not? Again, my biggest help is the positive things. The mood lifters. It makes no symptom less or go away, but it makes them a bit more tolerable. I felt worse when I was down, than I would now, even on days that would be the same. I will be looking for and watching for ideas to improve symptoms. I am wondering what cardio rehab would do.

My boys are rather unassuming. They do not expect a lot. Then they trust me, so they take it in stride. Initially they were scared (I was to), because they did not understand what was wrong with dad. Dad played the tough guy, and had them suck it up (followed by hugs of course), and they have responded well. I am teaching them to do what I would have done. I hope this is good for them in the long run. Give them some confidence. There has at times seamed like there was a cloud hanging over them, so I did things like getting them a puppy. That was a good mood lifter. It has been especially good for me and the youngest. He was falling behind and getting lost in the shuffle. Dad was not doing a good job. There has been a big turn around. The extra attention (sometimes not positive) has done him a lot of good. He has responded really well. They probably get more of dad than they did before. I was too busy before. Will finish an addition this week, and they will have their new and own rooms. They are pretty happy about that. This has been hard, but a lot of good has come out of this. I worry about my wife mostly. She has a lot on her. Trying to learn to help with that. She is one of those that will go until it all catches up with her. How about your kids?

I could use the massage therapy, but better save it for my wife. She has to put up with me and take up my slack. What helps me the most is getting out in the yard and piddling a bit in the afternoons. It is my exercise and my therapy. It is helping me stay focused, and optimistic. I cannot do a lot, but maybe (just maybe) I am getting to where I can do a little more. I have a lot of little personal projects here. I like my grape vines. My blueberry bushes, fruit trees, etc. It kind of offers me a little hope to think I might be able to continue managing it. I do not know if I am making any sense or not, but the point is that it is positive. Guess it is little small victories. I love that stuff, and to think that I might be able to continue with it is really helpful. If I did not have that, I would find something else. Most of all, my boys. I have more time for the details than I have had in forever. I am trying to get back to driving short distances. Then I could drop them off and pick them up for school. My fear is the car rider's circle. LOL. Don't know If I could make it. I had gotten pretty down, and was feeling sorry for myself. I was on a downward spiral, but I have leveled out a bit. For how long I do not know, but I have been there before. I will just ride it out if it comes. If I can remain positive and enjoy some positives, even if it is all going wrong, I will still be alright. These things are my therapies I guess.

Robin, you have friends and support now. These guys are pretty sharp.

brethor9, I hope that works for you. I keep reading this thread because it is a big deal to me. I really want to get moving better. I do not think that I am so bad that this cannot be managed enough to get me functional. I am having a hard time picturing me returning back to what I was doing, but who knows. I would like to. I promise that I will never complain about work again. LOL. The president of the company came to see me. He was asking if I thought I could get back to work. I tld him that I was having a hard time picturing climbing 30'-40' on latters etc. Heck I have a hard time picturing a lot that we do. His response was that they did not need me to, that all I had to do was supervise. You know that is easy to say, but if you want to know what the mason is doing, you have to climb up the scaffolding to see. You can't wait till the scaffolding is coming down to see if you have a hundred thousand dollar problem lol. But . . what I took out of the talk was that they would support me. I could get an assistant. The hours are long. Everyone would feel sorry for me now, but let the project get behind schedule or budget. The commutes are far. Right now I cannot drive more than ten miles, and I cannot make it through Wal-Mart. I am going to have start pushing for the next experimental treatment. LOL. I get real bad off, but right now I am not. I can tolerate the high HRs etc.

Good for you so far. I had hoped that you would tolerate it well, and it would help. It increased my BP when I stood to. Just more than is generally considered safe, LOL.

Iheartfrogs217 (does that mean that you love frogs?), I have never heard or read of POTS in it's purest sense being fatal. Some forms of dysautonomia can lead to more serious problems. I think that you can and should relax, and not get too concerned about that. Listen to your doctors. Make sure they know of any changes, like with medications etc., and you should expect to be just fine. It might feel like the end of the world, but it isn't.

I do not have any advice. I would not be shy about discussing my concerns with the doctor. It is also possible that you will adapt to the drug in time. It is all new right now. Right now your resting HR and BP is my normal. Keep your doctor updated on any changes and good luck.

Rachel, I am not sure what to make of it. It is interesting. How can we test negative on one test and so high on another? What does that mean? Could it be that the virus and mycoplasma is still a problem? If they are active and a problem, can something like IVIG be administered? I wondered if Tyler would get further testing if Histamine levels came back high. Rachel like always, I admire your persistence. You are a great mother. We continue to pray for Tyler.

I am guessing that a few spells that I have had was SVT. Did not even know what it was until a friend here mentioned it to me. I have been laying in bed, and heart rate is normal. Then a feeling come over me and instantly my heart is racing. I have seen it at 200 like that. Then like you said, it settles on it's own. I have had them last for near 10 minutes. Then it will subside rather quickly like you mentioned. Some of them would flare back up and settle, then flare back up and settle. Not getting as high as it did at first. They never caused me to faint, though I felt terrible. One thing that I thought was odd until I understood it, is that my BP would drop when my HR got that fast. I do not have this as a diagnoses, so it is not "proven". All I know is that my Hr is normal one second and crazy the next. I had them semi frequently for a bit. I have not had one in a while. I got to where I knew they were coming. I would have a feeling come over me, and often my esophagus would spasm. I still wonder what that would be, because I still get subdued versions of that sensation. My wife said that I turned grey when they happened LOL. They scare her. The used to scare me, but all I can do is ride it out it seams. The first ones settled down before I got to the ER. They would only catch the ups and downs of the after math. I get the flip flop feeling every day, but I have just called them palpitations. They have never lasted long, but they are uncomfortable enough to make me want to sit down.

I am glad that you chose to go. These kind of issues are scary, but it sounds like you are in a good place. Let us know how it goes.

Chuck, I hope you find your answers. One thing that you can do to help get going in the right direction is your own stand test. Lay down and relax. A good 15 minutes is good. Doesn't necessarily have to be that long, but I get more consistent results if I am relaxed. Check your heart rate and blood pressure. Stand up and check your heart rate and blood pressure in increments up to 10 minutes. Autonomic dysfunction is a broad subject, but this would be a good clue for you. Post your results here and you will get a response. Unfortunately there is a lot of things that can cause your symptoms, but you share some of the same symptoms many here do. I think it is worth investigating. I bounced back and forth between doctors, and figured out what was going on with me by going to the drug store and buying a blood pressure monitor. Your medication can effect the results, so it has to be a consideration.

galatea, it certainly overstimulated me. To a point where it overwhelmed me. Blood pressure as high as 180/120. Everything was flipping out. I had all of my symptoms all at once times 400%. It took me on quite a ride. Within an hour of taking it. I did take it four times, and it varied in intensity. This was taking 150mg see how you tolerate it doses. I cannot help but wonder why. It helps a lot of people. I thought it might have been the right one for me.

Trying to get there. I have one point to get a grip on in order to work. Might not be able to do what I was before, but I could try to learn something new.

If you feel concerned enough to consider getting it checked out, then please get it checked out. If you check out fine, and they want to discuss panic attacks, you know how to deal with them.

I really hope that it is a good option for you. I had many reasons to think it would help me. I was and still am disappointed that it did not work out for me. I tried it four times to be sure. I wanted it to work that bad. I had the same reaction all four times.

You and I have some similarities. And you are not crazy, or on your own. There are many people here that can relate. I saw where some other members were deficient in vitamin D. I do not think I have ever had that tested. As far as the spelling and grammar etc. I have never been sharp, but I seam a little less sharp than I used to be. Particularly when my head is giving me fits. I really hope that this POTS specialist can get you going in the right direction. I am sorry that you bounced back and forth between doctors for so long.

I tend to have high blood pressure when I stand, or sit up (after an initial drop) and still feel awful. On bad days, sitting up is a problem.