gjensen

It is not winter here yet, but it is coming. I am looking forward to spring myself.

I have had some adrenalin like surges, mostly in the mornings. This teeth chattering is often associated with trembling. Sometimes not. At night. Before or after I go to sleep. Sometimes the swallowing motion triggers it the chattering alone. They only last a few minutes. A lot of times less than that.

Does anyone else have this happen, without feeling cold? Most often this happens as I drift off to sleep and it is associated with a disrupted breathing pattern where I tremble. Occasionally, this happens as I relax enough to go to sleep. Also in spells, I can initiate it with swallowing. I have not seem where anyone else experiences this, and I am unable to find a satisfactory answer.

My biggest brain fog problems is while I am standing any length of time. It is as my brain is not getting enough blood. Even though my BP and HR is high.

I am 6'2". I was 190lbs, but lost 30. I am trying to get my weight back up. It is hard to when the stomach will not empty. I wonder if the drastic weight loss (It was muscle mostly) is not a contributing factor. Has anyone heard of anyone getting their condition back, and seeing an improvement?

LOL. Medicgirl, everything makes my hr go nutty. Bumps in the road gives me fits. You know thinking back on it. The shower was one of the first things that told me something was wrong. It would suck the wind out of me, and I would have trouble breathing for a while. Hot water still will.

OK. I have my binder to go with my panty hose. LOL. I will try it in the morning. Just snug it as tight as you can tolerate it?

I did not think about the lifting my hands above my head. Learn something every day with this stuff. I will pay attention to that.

Alicia, I am new to this stuff. I really do not have the right to comment. I would hate to say anything out of place. I have thought about you over and again since that post. What you are going through is difficult. Only you could know what it is like. I don't and I am not pretending to. Before all of this took over, with my boys, I had got on the subject of the "little things". As a kid, I enjoyed flipping rocks and logs looking for the little hidden treasures. I would spend my time outside looking for these treasures. If I would hastily walk through a meadow or wood, I would miss what I was looking for. It was a little wildflower tucked away here, or a little fascinating critter there. I found life everywhere, and more of it in places that we would normally over look. So much was hidden away. This spring I took my oldest son to a little State Park down the road, and that is the subject we got on. The little things. Slowing down, and stopping to enjoy the little things. A purple or green damselfly here. A butterfly there. That little wild flower hidden here. I always felt that someone took special pleasure in showing us in those little things. Not the big things. The little things that we were too caught up to see. Along the way, I noted a man looking around the site. For some reason, he caught my attention. Later, my on My son said that he had his attention to. As we were leaving he motioned to me. I got out and approached him. He had questions about the park. He drove from Maryland to SC to see this park. His wife was from here. He was from Maryland, and they had lived in Maryland together since the 70s. She passed away last summer, and this spring, when he was sorting through some of her stuff. He found an old wallet. In this wallet was a card certifying his wife as a minnow. She had learned to swim at this park, and she completed the first step. This made her a "minnow". This man drove all the way from Maryland just to see where his wife had learned to swim. She was gone, but he was still enjoying her. And what he was still enjoying was those little things. What his wife had kept through all of those years was a little thing. He drove all of the way from Maryland to see this little thing. As we parted he mentioned that we were all a minnow once. I did not have a reply other than I think that I still am. I am still trying to learn how to swim. One thing that this illness has impressed on me, was how good I had it. And how much I regret not slowing down to appreciate the little things. Particularly with my wife and boys. I have been so caught up with my foolish ego and ambitions. I always wanted more and it was never enough. I was trying to fill a barrel with holes in it. It could never be filled. Now I am getting caught up within myself, and I am doing the same thing, in a different way. My family is away right now, and I am looking forward to them being home. Right now, I just want to see the smiles and hear the voices. All that really matters is the little things, and in the end all that will matter is the little things. I am trying to, and I hope that you can, take some pleasure in some little things. Now matter how little they are. My wife rolled over the other night and laid her arm across me. Before, I would have never thought anything of it. Now that little thing is big. I would have held that moment forever if I could have.

I would guess that it would always be a good idea to investigate the cervical spine. Even if you get a backwoods neurologist that says that it cannot be your problem. There is a lot going on in a very small space. I have a mucus secretion problem. It was my first symptom. It gives me swallowing problems. Every swallow is more and more until my food starts getting caught in it. I still do not understand this problem, but I read a report where a woman had it to a bigger extreme. She had a chronic coughing problem where she literally coughed all day and night. She eventually figured out a certain position that gave her relief and made herself a home made brace. What they figured out when they opened her up was that a bone spur was compressing her vagus nerve. Her vagus nerve was also on the opposite side that it usually is, so they never suspected it. They shaved the spur back and all of her problems went away that same day. She had the problem for over a year. My cervical spine is a mess. I do not know if it has anything to do with my problems. I do know that it contributes to my swallowing difficulty, because it is pushing in on my esophagus. They could see the impression on a barium swallow test. I feel it when I swallow. I am interested in seeing my neck mri with contrast. Might be a foolish hope, but have to have it.

I get symptomatic sitting up, so I lay back for a bath. I can tolerate it, if is not as hot as I used to like it. I have to take it easy pouring it on my head for some reason. The water that is ok to lay in, is not ok pouring it over my head. I do not get it.

Oh, and I like the puppy. I met my sister's dachshund recently, and it was a delightful little thing. High maintenance though. You had to "baby proof" the house for that thing. It was non stop, but good natured.

Well, I will order one now. It is worth a shot. I am wanting to be able to drive. If I could take the boys to school, that would be a big step forward. I am not confident because just bumps in the road trigger it, but they subside quickly. It amazes me that I have become that sensitive. Thanks for all of the insight.

Janet, do you think the abdominal binder would help with my BP while sitting? I would like to be able tolerate sitting upright.

Sarah, type A would have been an understatement. I have wondered if I did not do this to myself. I was a before dark to after dark kind of guy. I felt like it was all getting to me before all of this hit. Really though, I knew something was happening. MedicGirl, the hardest part for me is how it relates to my boys. I can't take them anywhere or do anything with me. My youngest asked me yesterday if what I had was curable. I asked him why, and his answer was so that we could play basketball. That was hard for me to swallow. A lot is going to change, and my boys is where my concern is. I took a few shots with him today. I pushed it a bit today.

Hope, I like your answer to. I want a reclining electric wheel chair. I get high blood pressure from sitting upright. I suspect that if I reclined enough to control it, I would not get the leverage I needed to manage one otherwise. All I want is to watch my son's football games etc. Maybe make it across Walmart. I suspect that my insurance company would not pay for all of that. I do not know I will try. I wore my "panty hose" today. lol

Does anyone have any experience with improvement from compression garments? I bought a waste high set. Goodness they are difficult to get on and off. What about knee highs and one for the waste? Any ideas about where to find G-suit pants? Has anyone received help from their insurance company with a wheel chair? I want an electric one that reclines.

Chaos, I do not suspect connective tissue disorder. Maybe one of the few things I do not suspect. LOL. I like my dysautonomia diagnosis right now. I think that it better describes what is going on with me. If the sub group labels do not aid the start of treatment, then I could not see where they would be helpful. MedicGirl, I tried pushing myself yesterday. I spent 20/30min? up right. Tried to rake a bit. Heck, I would probably just keep pushing it, but I swear even though my blood pressure and heart rate is high, my brain is not getting enough blood. I get dizzy, get where I cannot think, etc. Nothing new to anyone here, but . . I am still trying to adjust to this new reality, emotionally. I am up and down right now. The lack of activity, or the ability to do is the hardest part. This is no nock on anyone with this problem, but if I did not have legs, I could adjust easier. If I knew that it was going to be like this until the end, and I was given a choice . . I would volunteer to take them off myself. I could figure it out.

Katy I imagine that was not as comforting as intended. MedicGirl, I wish that the TTT was done by someone, or interpreted by someone that knew what they were looking at. I don't. It doesn't fit a typical pattern, but not much about all of this is typical. For any of us. Guess you cannot rationalize irrational. I just wanted to try something, and I started clonidine today. I will know after a bit, I guess, whether or not it is an improvement. I just do not know if I am starting in the right place. One minute I think that I am, and another I do not. All I am asking for right now is to move about my yard. Take the boys to school etc. I think that I can settle with not being able to do everything. I just want to be able to do something. I appreciate the replies.

I am still trying to drink out of this fire hose. I was looking over some graphs of tilt table responses. I do not fit any of them. When I stand, I get the heart rate spikes. An increase anywhere from 40 beats to 80/90 beats. Who knows. Depends on the day. Also when I stand I have a blood pressure drop, but not especially large. 10/20? The drop is short lived and then my blood pressure begins to rise. And rise. The high blood pressure with my OI made me suspect hyper pots. How many hype pots have the initial drop though? On my TTT test I went from 110/70 and 65bpm to 130/90 and 110bpm after being upright. Then I crashed to 70/45 and a hr of 160 with the nitro. Is the POTS diagnoses based on no more than a drop of 10/20 based on standing or after the drug used in the TTT? It is going to be a while before I see an actual sub specialist, and my cardiologist is giving me the freedom to decide what I want to start with concerning treatment. I asked and filled a prescription of clonidine based on the idea that I might be hyper pots. I get the "adrenalin surges" etc. Can you have Hyper Pots and have the drop then the high blood pressure? Also, is anyone else so sensitive that just riding down a semi bouncy road cause their blood pressure and heart rate to spike? Regardless, I am trying clonidine today. Guess we will see how it goes.

Sarah - I am new here, but I wanted you to know that I am rooting for you. I wish that I could have been there to deal with that woman myself.

Sarah - I am new here, but I wanted you to know that I am rooting for you. I wish that I could have been there to deal with that woman myself.

Had a brain MRI with and without contrast.normal Had a neck MRI without contrast. Bulging discs, osteophytes etc. Will have another neck MRI with contrast next week.

More and more, I am having trouble breathing. Today was a bad day. I have the shortness of breath with the trembling at night, waking me from my sleep. Most often it is soon after I go to sleep. I wake up feeling a need to swallow, which I do not understand. I stop trembling after waking, and it has been that I have been able to get my breathing in order after. That is getting more and more difficult. The CO2 logic makes sense to me, because most often it has occurred as I drift off to the point where I should be detecting the CO2 levels rise and the automatic breathing kick in. This symptom seams to be progressing.

I do not know about my BP. It is so up and down. The only thing about it that is reliable is that it is certain to get too high when I am standing. With out without this beta blocker. Otherwise it all over the place. The BB has (or I am giving it the credit) is keeping my HR spikes from getting way out of line. I can tolerate standing for longer periods of time. Last night, on the way home from NC, bumpy sections of the road were giving me grief. My blood pressure would jump to 160/120 and a HR of 150, then drop, then rise. All depending on the highway, and I was laid back the entire time. I made the mistake of taking a vehicle with stiff suspension that we will not take any distance again. That was a long 3 1/2 hours.