gjensen

I hope that this is your answer, and your solution.

Stimulation causes me to sneeze. Good thing I am far removed fro the dating years.

Everyone that knows me knows, if you want to talk, you better get stepping. Corina, that is a concern of mine. Where I am walking is off the trail, and I have the "dad, look at this". If I needed help, it would take a bit for someone to find me. The boys would have to go get someone. The cell phone is not working well there. I will be careful. I guess. Yesterday was a reminder to back off. It is 1200' to walk back and forth across my yard, and I have been doing that for a while. Earlier, I could not walk the yard, or even out into the yard. I am going to back off a little, but keep plugging at it. My real problem is moderately heavy labor. it takes very little to push it way too far. That can trigger some spasms relatively easily. I do not know what the difference is.

Mid way, I was wondering if I was going to get back. LOL. Every step was precious.

But it was too much.

It is normal to see some variation. At least mine does.

Anything new that is concerns you should be checked out. We have so many bizarre symptoms that we want to dismiss this or that, but there are things that we should not. You need to know for sure. If it concerns you enough, get it evaluated immediately. Then follow up with a cardiologist.

It has been called SFN, and autonomic neuropathy.

I had not heard of this either. I will look into it. It will be new to me.

My worst symptom (at the moment, that changes a lot), coronary vasospasms follows a rhythm. Late at night, they can be problematic. I can have them as I drift off to sleep. Early in the morning, upon waking, I am guaranteed to have a flare. It is a great way to start the day. Early in the day, I am still vulnerable, even after having them relieved. As the day goes by, they tend to give me a break. Except on the bad days where no break is coming. Late into the evening they come back. There are a lot of physiological changes from wake to sleep, and sleep to wake. One of my issues upon waking is getting out of sleep mode. This is on occasion. I can go an hour before I get my breathing normalized and my O2 up. I have problems with my transition to sleep where the automatic breathing fails to pick up. Over and again. I suspect that the cortisol levels being their highest in the early am, is my issue with the morning spasms. That does not always make sense if I take a nap in the day, and experience the same. Maybe it is sympathetic over activity of sorts. This may be too much information, but my urine is very dark in the mornings. It takes me some time to get hydrated, etc. Concerning the cognitive difficulties, early is bad. I am ok late in the afternoons. then in the evenings after some activity, I can be worse than I was before. Sometimes others notice more than myself. Mostly I follow a pattern similar to others. Mornings are the worst, followed by gradual improvement. Then a return to the bottom late into the evenings. Ironically, my orthostatic tachycardia is at it's lowest in the morning, and at it's highest mid day. Lower again, late in the day and evening. My neuropathic pain is always at it's worse retiring for the evening.

" None are as sensitive, as those that have been skinned alive." I had my soft spots along the way. A few in particular. I was aware of chronic illness, but the subject is in a new light now. I hope that I can become stable enough to contribute in some way. I have no idea how, but my experience has been that there will be no shortage of opportunities. This illness has and is settling my ambition, and I am happy with that. It is tempering my pride, and cleaning away all that separated me from what matters the most. Much of what I was caught up in, was frankly, vain. It is and has been a slow process. My brain thinks as it always has, but the body reminds me, and brings me back to reality. Over and again. I want better than this, and I hope for better than this. It has not been all for nothing though. Some of what it has given me, I needed. Some of what it has taken away, I did not need. It will be interesting to see how this process evolves. It is encouraging to see how so many here, respond so well. Some that suffer the most, are the most encouraging. Some that do not suffer it personally, still come to support those that do.

Early on, Butchers Broom helped me. I had wondered if it would not help others. Eventually, I started reacting to it. I react poorly to a lot of things. If your doctor is ok with you trying it, it may be worth a trial.

Thank you Sarah and Goschi. Sarah, I was down the next day, and became pretty depressed about it. The OI did not keep me down, it was the pain. Maybe my worst day concerning the pain. I can now be truly sympathetic to those that suffer with chronic pain. It literally got in my head that day. Eventually the chest pain got intense enough that I went to the ER. I had dosed up on extra diltiazam on the way there, and that day. I have literally cooked my entire chest trying to manage the pain with rice socks, LOL. It is definitely scarred. The doctor felt that I could be having some ischemia (EKG), and wanted to do nitro. I did not want to nitro, and I did not want anymore diltiazam (too much drops my HR too low). He hesitantly offered Ativan in an IV. 2mg. Within 5 minutes I had complete relief. I was surprised but relieved. So the good in it is that it confirmed this drug could help. Yesterday, when the diltiazam was not enough, I took 1mg of Ativan and it worked. I tried Ativan before diltiazam and it was not enough. The diltiazam alone helped, but was not enough on the bad days. It cut down the worse spells and the associated SVTs, but not settle all of the pain. I could not tolerate the next highest dose. 240mg per day made my brain fog intolerable. I tolerate 180mg ok, and have some quick acting for the break through spells. The point in the ramble is that I may have found a clue in what is behind the spasms, and a way to manage them. Maybe. I am trying to figure this out. I think I am starting to understand the root of these spasms. The OI has certainly gotten better. For now. This illness is constantly evolving. Weird stuff that we deal with. Goschi, I am not done looking for a cause. I was, but I am not anymore. I was looking into local immunologists yesterday. I am not sure where I might go next.

Boomerang, I hope that you get your answers.

Sounds like you have plenty to look into. I do not suspect EDS, but pain has become a very big part of what I experience. I do not have pain in my joints. I do ave back pain, pain in my legs, arms, and stomach. I believe this is neuropathic pain. I have never ending mind boggling chest pain that I am yet to have managed.

Congratulations. This should enable you to pace yourself, and may make a difference for you. I can relate with the mixed feelings. I was recently approved. In one sense, I was relieved. In another sense, the reality of it all settled in. It certainly does not have to be a permanent solution. That is how I am looking at it, but I will be positive before I give the benefit up. I was also approved on the first try.

Thank you for the support. I really hate to say anything. Everyone around here knows how that goes. I do think my OI is better though. Just these other things to sort out at the moment. The OI is my smallest concern at the moment.

I meant to add that the moments e can spend with our kids seam especially important now. For them and us. I know it did me a lot of good.

BigSky, I get so much chest pain (and so many different kinds) that I do not know what to attribute it all to. No one can really say what all of it is. I suspect that I frequently get some degree of spasms that do not get serious, but are still painful. I have scarred my chest with rice socks etc. trying to get a grip on the pain. It has been bad. What I am certain are coronary vasospasms, feel like a heart attack is described. Often it starts with a burning pressure feeling in the lower chest that progresses to a very painful pressure sensation over my entire chest. It radiates into my arm and face. Usually when they get bad, it triggers a run of SVTs. Sometimes my heart hurts first and then it progresses. I get very dizzy, and everything goes black on me. Something about them is that there are particular triggers for me. Too much exertion can trigger them, after I lay down. Waking up is a trigger. Every time. It is only a matter of how bad it might get. If I take a nap, then I will go through it again. The ones that trouble me the most is ones that I get late at night before I go to sleep. I can get them as I go to sleep. Sometimes I can feel my aorta throbbing first. Keep in mind, I cannot positively say that all I experience is spasms. Now that Mayo has decided that I have the problem, everyone is going to blame them. I say this because I suspect more is going on. I have never had a need to cough during them, or a low heart rate. My heart rate usually picks up and if I get a run of SVTs, it can get to 180 etc. Has this happened to you more than once? Have you talked to a doctor about it? Vasospasms can be hard to get diagnosed.

BigSky, yes and no. I have no formal exercise plan. I just do what I can out in the yard everyday. I push it a little bit. It is up and down, but I have been able to do more. Thank you Sue. The biggest part of the accomplishment was that I was able to walk off of the trail with my youngest son. He likes to do that with is Dad, and that was the first (since getting sick). We discuss the plants and animals that we see. It tickled me to see him bright eyed and enthusiastic. I hope to do that again with him soon, more often, and for a little longer. Knock on wood, I am starting to think that if I could get a grip on the vasospasms, I will have come along ways. This illness is so bizarre.

Of rough terrain. That is the most I have been able to do since getting sick. Progress.

My position is that any palpitation that causes other symptoms should be discussed with a good cardiologist or EP. I know this is something that you know, but that is where I would draw the line. Some uncomfortable PVCs is one thing, irregular heartbeats that cause dizziness is another. That is not saying that it is anything to worry about or not, but it is at the very least something to get identified.

Clonidine might be worth asking about. Low doses helped me.

I do not like where we are headed either. It is one of those, be careful for what you ask for.

I like your user name.