gjensen

First of all, good for you that you are able to do things. The other is, what does your blood pressure do?

Confusedguy, I am (was) a commercial construction superintendent. Schools, Hotels, medical complexes,etc. It is all I know, and all I have done. There is no way that I could keep up with the rigors of the job requirements. The schedule is much too demanding, the physical requirements are much too demanding, the mental requirements are much too demanding. The commutes are too far. Though I always enjoyed the challenges of what I did, I would like to learn something new, and be productive. If I could get where I could drive somewhere, or stay upright for even small lengths of time . . . My fear is running out of money in the mean time. The concern is for these boys and my wife. The boys are good boys, and my wife is great. I would hate to see them suffer. I know some have it worse than me, and I was whining. Just getting the run around, and the doctor part looks rather hopeless. Had some testing done last Friday. Testing I did not need done. The one I thought could be helpful (catecholamine levels), I realized . . . I am clonidine (something I got myself put on) would effect those levels (I think). I did not think of that, but I should not have to. Then the cardio was going to fill out my short term disability (the GP wanted a specialist to do it), and after sitting on it for 2wks, he decides it is best that the neuro fills it out. Well I hope the neuro will because I do not have anymore options. The same cardio was supposed to be referring me to Mayo, and after waiting and waiting for news he had decided it was best that the neuro decided. As far a I am concerned, a man decides before he makes the commitment. And if you do change your mind, you are man enough to tell someone. Not leave them hanging there. Leaving me hanging there, is leaving my family hanging. That is what bothers me the most. And the helplessness to do anything about it. I am used to telling people what to do, and them listening. Not getting treated like I am less of a person. I guess I needed a dose of humility. The family did not need it though. Just me.

Thank you both. I should have kept my mouth shut. I try to stay quiet around here. So no one else worries. Bell girl, I have a diagnoses or two or three, but I do not know how confident they are about them. It is not well understood by them. This condition has exposed some flaws and weaknesses of mine.

It was troubling enough to once be strong, then weak. Once active, and then inactive. To once enjoy a number of things, to have to give them up. To go though a number of doctors that cannot see passed their foreheads. To realize that if anything happened to you, there would not be any support for your immediate family. To once be the family leader and provider and then become a burden and hold that same family back. Now every doctor I have thinks another should fill out my short term disability paperwork out which I will not get if I do not get done. It is an uncomfortable feeling to consider that your family would be better off financially if . . . I have always been about solutions, and have no solution. I will have a solution, and a conclusion. Regardless.

Another one that disturbed me was, that is not my specialty. Every specialist, lol.

I can only comment on the shortness of breath. I get and have gotten episodes with shortness of breath. While on a beta blocker, the frequency increased dramatically. Also the episodes were more intense. When I had a day where I struggled to breathe all day, I got off of the beta blocker. I have not had that level of trouble sense.

I like Rachel's thoughts. They would be similar to my own. Otherwise, my thoughts would be to do what you want to do. Just consider how you might feel about it a year later. Not just that day. Would you wish that you had? Regardless, congratulations!

I want to do both. I want to be able to walk the property to do this and that. It is a quarter mile across it and back. With the in between, I can get a half mile. I want to do a routine in the morning and evening. I have not purchased one yet, but I intend to get the bike. I want to do it every couple days. I have lost muscle, and I want to get some back. I am figuring the resistance on the bike would help me there. First, I want to get the first routine I mentioned accomplished. I had gotten down to 158 and 6'2". I intended to put some weight back on, before I pushed anything, and I have. I am back to 173. New goal is 180, then 185. I was 190, but 185 would be close enough. I fluctuated according to the season anyways. A summary is that the walking (feeding and watering my birds and orchard/gardens ) would be a partial return to some activity. That would give me a mile per day. Then the bike would help me get some muscle back, which I think that I need more than anything. If I am so fortunate to get that far, I want to be able to do some mild weight lifting. I am thinking that I can get where I can handle most of these things if I am smart about it. I am sure that I will have setbacks, but I have to have a picture in my head.

I wonder if Florinef ha helped anyone with these symptoms.

Early on before I understood what was going on, I had very similar issues. Then I would get relief by walking it off. I would get symptomatic driving, would pull over, walk it off and keep going. Now it works like the above poster for me, but more of an extreme. All I have to do is sit up, and I get awful head symptoms. Sitting up (and especially leaning forward), is as bad or worse sometimes, than standing up. My cheeks get numb feeling first. Then progresses to ear ringing, and eventually migraines that can last for days. I will watch for responses, because this is what limits me the most. I seam to be able to manage and tolerate all of my other POTS symptoms except this. And so not to discourage, I am not being "treated" yet. So I am hopeful and expect to be able to make improvements in this department.

LOL. I hate to laugh, but I can relate. I am not laughing at you, but with you. That was good. Thank you. I needed a laugh.

Bellgirl, I was cautious because my experience with the beta Blocker was not good. I took half of what they told me, and still had very low blood pressure. The longer it was in my system the more it dropped. It gave me fits breathing to. So, I told them that I wanted Clonidine. I was just trying to get stable until someone smarter than me could help. The spells were pretty traumatic to me. Especially when I did no understand what was happening to me. I was a coward and took a 1/4 of the pill. twice a day, and it did not give me any trouble. Then I went to half, once before bed and a quarter in the morning. Then I went to how I was supposed to. Once per day, but I found dividing across the day helped my HR better. It has not dropped my blood pressure noticeably, but I am not taking anything else at all. This condition has taught ne to be cautious, and I am sure that you know better than me. You could not take Clonidine from me right now.

bellgirl, what I call my spells is adrenalin surges. Clonidine has mostly solved that for me. I am taking .1mg per day. Nothing else yet.

I am no real help., but I have had a nerve biopsy. They took four very small skin samples. Two near my ankle, and two near my hip. It was relatively painless after a couple numbing shots. I imagine that you will be getting a battery of auto immune tests done. How long have you been symptomatic?

I was typing while IceLizard was posting.

I do not have a formal treatment plan in place, so I cannot remark on much. I am taking Clonidine however. It has tempered my "spells" in frequency and intensity. I also have not had any noticeable bad effects from it. My mouth gets a little dry as it kicks in, and that is about all. I have noticed that if I split the dose throughout the day, I get more consistent results. I am not making that recommendation. It does come in a patch form for more consistent results, but I would not want the patch without first seeing if I tolerated it well. Right now, I am glad that I am taking it. I do wonder if it is not contradictory in my case. I had wondered if clonidine and midodrine was and could be prescribed together. It had seamed to me that they would contradict each other, but everything with POTS seams contradictory to me. I do not seam to tolerate beta blockers well. At least the one I have tried. I also was not a good candidate for Mestinon, so I am hoping that clonidine can remain on the table for me. Hopefully someone with more experience will reply.

The one that got me most was "You are looking for something to be wrong.". This was without an interview, but reviewing my inconclusive records. Which was a bit extensive, I admit. I voiced my concern with is approach, and he changed his tune. I still never went back. That was a deal breaker for me. Hi office called and said that he had ordered some tests and asked when I could come in. I told them I was not. Never heard any myths. No one was familiar enough with it to believe any myths. I had one doctor ask how to spell dysautonomia for his records.

I hope that you have success with the Mestinon to. I would only suggest to take a very light dose to start. I reacted poorly to it. Very poorly. I have not been able to find anyone that reacted the way I did, so I would think that I was an unusual case. I wish that I could take it, but I cannot.

I like it myself. I tried it, stopped, and then picked it back up. I just (overall) feel a little better on it than without.

I am a minority in this crowd, being an old man. I lived 40 years with excellent health. I literally never went to a doctor in my adult life. No check ups or anything. I rarely ever got sick. Went 8yrs without missing a day of work because of illness. I am not certain, but I may have never missed work because of illness until this. Two years ago I did have a near syncope incident while I was driving. I do not know if it is related. About 16 months ago, I began to know something was not right. I would get tired easier, and climbing stairs was harder than it ever had been. I knew something was not right, but I kept going. Gradually my anxiety level began to build. I was running a challenging project, so I chalked it up as the job was getting to me and kept working. Then about 11 months ago I began having trouble swallowing and it progressed until I was having trouble getting anything down. I finally went to the doctor and began chasing my tail. I was diagnosed with GERD and put on PPIs. I did not tolerate them well, and they made a mess of my digestion. The whole time I was going down hill. I had more and more pre syncope spells, and the symptom list was growing and growing. I started getting the anxiety speeches etc. I did not know what was wrong, and no one else knew what was wrong. I bought myself a HR monitor, and a BP monitor. I saw the problems myself, and started trying to figure it out. Then I run across Dysautonomia and POTs. I had never heard of them before. By this point, I was in pretty bad shape. Lost almost 20% of my body weight and I am a slim person. I was having trouble just getting to the doctors. Finally, I brought some printed information to a doctor and he referred me to a cardiologist that put a HR monitor on me and he confirmed what I had told them. My HR had gotten to 180. Then came the TTT. I had an increase of 85 BPM and dropped 40/30, but they said it was negative. Guess because I did not faint. So I insisted on a referral. Then I went to Duke where it was recognized and diagnosed, but it was not clear how to approach it. They (he) gets it now, and is talking about an actual treatment plan. He had me try some things that did not work out real well. Duke wanted to dig into causes and has done that. The testing has been extensive and a lot more is coming. Coming after me this doctor will be much more prepared to deal with POTS. He wants to know why. Duke's short coming is that they do not have a subspecialist and the autonomic lab. Otherwise they have been great. Problem is that all of this is still progressing. Like one poster said. POTS is just another step for me. There is more going on than POTS alone.

Welcome. I think the way your symptoms started is interesting. Nothing like it before? You can get tested for other infections carried by ticks also.

These are some thoughts that I have on the different symptoms. Inability to lay on the side. I have no clue what is happening, but I start having trouble breathing and get palpitations. Also get dizzy and sickly. I have woke up in this position feeling like I was having a heart attack. Lower arm weakness. Seams to be more of a sensation than actual weakness short term. Long term it does not take much effort to get them very weak. Maybe the muscle loss is deconditioning, but I do not like how it is progressing and the manner in which it is progressing. The burning sensation has been around before the Clonidine. I think it is vascular. I think the muscle twitching exclusively on the right side is interesting. How intense it can be and painful is interesting. These signals are coming from the brain, but why? I wonder if his is related to blood flow problems. I think the sleep transition problem is from the brain to. Why? I guess what I need to do is figure out improving blood flow to the brain and see what is left.

I did not have good luck with the beta blocker I tried. Bystolic. I had a hard time breathing.

That is similar to where I am at. Other than the initial drop upon standing, my blood pressure is usually normal. I am excluding my episodes, and periodic surges. Still my symptoms are of low blood pressure. I can "faint" with normal blood pressure. Apparently my body is working over time to keep the pressure up, but still does not get quite enough blood to my brain. That is my theory anyways.

No other conditions. Only taking clonidine to keep the surges at bay while I figure this out. I have been experimenting with Licorice.