gjensen

More good news. I hope this thread can keep going.

Alicia, I could not know what was part of your illness or not. I do hate that you are feeling this way and I can relate. It sounds like you need to do as I do. Get in front of a good subspecialist and get the complete work up. I admit that I have gotten down lately. It all was getting in my head, and I seamed on a downward spiral. I haven't gotten any better, but I feel better. Keep your head up. We are going to get a grip on this.

Dave, that sounds very familiar. Even the exact weights. My lowest weight was exactly 158. Concerning the heart rate. I get to 150 here and there. The typical is 120-130. Highest was near 250, twice. Highest documented was 220. Oddly the highest is when I have my "spells" and they are have been when I am at rest. They are quite painful when they come out of nowhere like that. Elizabeth, you are right. Where I am lacking right now is a thorough work up. I like my doctor, and he actually pretty darn sharp. His focus has been digging into why. He felt that it was most important to see if a underlying cause could be found. I felt the same way. There is just a lot there to sort through. I never considered EDS because there is no hyper joint mobility. I do have a hernia, reflux, etc. In fact I think the hernia has gotten worse. It gets to throbbing in certain positions. Varicose veins is prominent on both sides of my family. I did not do well on pyrodostigmine either. Initially, I had hope. Then I ended up on a roller coaster and it increased my blood pressure and fluctuating blood pressure. Both of these posts have been interesting and helpful. Can I ask what has given you two help and or relief? What kind of improvement have you had? Trying to get out of bed. LOL.

I have tested high on all of the B vitamins. if I was deficient, I am not now. Now the magnesium idea is interesting because I test high for magnesium. Calcium to though. Now I have never been tested for D.

DustBunni, I have lost faith in medicine. I went forty years without a single problem, so I had no idea. Around here, if you have anything more than a tummy ache, you better get out of town. I went to the ER once early on after blacking out on the highway. My left face and arm was numb. Heart was racing and pounding. I went to my GP which told me to go to the ER. So I reluctantly did. Of course I had settled down after waiting forever. The doctor comes in and said that you are not having a stroke. He told me that without ever talking to me. He had looked at the chart, decided that it was anxiety, and came in to tell me that. I will not repeat what I told him as the alarms were going off. LOL. He kept looking at the monitor, and preceded to ask me not to take the leads off. I left with them asking me to stop. I had heard anxiety one to many times. I have had a lot of doctors that would not want to see me again. Fortunately I have found a couple that I can relate with. Peace, I get the swallowing/breathing thing all of the time. Sometimes all night. It is awful and frustrating. I have finally heard someone else have a similar complaint. Also the laying o your side. I have similar issues on both sides. Crazy to be restricted to lying in one position. First it was one side and now it is both sides. I guarantee that I "forget" to breathe. That is my sleeping problem. Ever getting there to begin with. And I need to shave. LOL. Shaving is an adventure right now. Looneymoon, to not have these challenges yourself, you are very supportive. Your son is very very fortunate to have you while he is going through this.

I do not know anything about anything, but I have always loved potatoes. One of my first vegetables put in the garden every year. I love a good looking well kept potato patch. Harvesting the baby potatoes was like digging for gold. Strangely with all of this, I seamed to have developed a sensitivity to it. As soon as it hits my stomach, I get sick. I will try again, because I love my potatoes. I did not do as well on the Mestinon. At the very least it gave me high blood pressure. If it was recommended that I try it again, and I was more stable, I would.

Hopefully good news stories will keep coming in. They are encouraging to here. Just improvement is good to hear.

Neuropathy was confirmed by skin biopsy. Two out of four Qsweat test locations results were abnormal. One was a low response, and another no response. Two were normal. A number of specific antibody tests were negative. There has been no specific tests for what I would guess to be most likely. There may have been a bacterial or virus infection in the stomach/intestines, but I would not bet on it. My original complaint was swallowing. I got caught up on the reflux train (ironicly I have it now, but not then). Then I ended up on PPIs, which did a number on my stomach. I did not tolerate them well. As I complained of no improvement, they prescribed larger and larger doses and stronger stuff. Eventually I figured out that the PPIs were no good for me and weaned myself off of them. It took a long time before my stomach/intestines to settled down afterwards. I do wonder if I did not create an environment for the bad bacteria to get the upper hand. Who knows. I did have chronic diarrhea for months. The swallowing was my first reason to start going to the doctor, and is still unresolved. I think that I finally figured it out. On an endoscope a doctor mentioned an interruption in the mucosa. I am not certain what that means, but I am guessing that it means an interruption in the mucus lining of my esophagus. My main complaint with the swallowing was mucus. What I thought was mucus. I know now that it is abnormally thick saliva from my parotid gland. I did not know that then. This trouble swallowing led to weight loss, but I kept working. At work and at home. Building an addition at home, remodeling, keeping up with my bird project, gardens, orchard, etc. Working six days a week for a living. I lost 30lbs off of a 190lb 6' 2" frame. I have had a chronic stuffy nose forever. I do not remember when the last time I had a runny nose. Just a dry stuffy nose. Along the way I have developed "cotton mouth". Never paid it a lot of attention, but I noticed it. It has came along with this and has not went away. Now I have on again and off again dry eyes, but can't say that is nor from medication. I have been off and on clonidine which can cause that. In the beginning, I had breathing problems. Of course they were dismissed as anxiety, which I some cases did turn into anxiety like attacks. Trouble breathing for someone that never had the problem is unnerving. And progressively the unexplained dizzy spells etc. Eventually I bought a BP monitor and started checking it according to symptoms. First I identified High blood Pressure sitting in certain positions. driving was giving more and more trouble. I started to see heart rate spikes. Just here and there originally. Then they began to be more and more of an issue. This led me to the cardiologist and holter monitor. He caught the HR spikes to 180. No wonder I was feeling so bad. This led to the TTT etc. Now I am at Duke. Which I feel good about. I am concerned about the progression. This has not plateaued. The symptoms wax and wane, but there is a definite trend up. Now did I dig this hole myself, or is there an autoimmune response going on that would be happening regardless of the recent history. I cannot help but wonder with the parotid gland problem, the mucus interruption in the throat, the dry eyes, and dry mouth if this is not starting to look like Sjogren's. Not to mention lung pain, cloudy urine etc. Food sensitivities that I had never had before etc. I could go on and on. I do not think that my dysautonomia is primary. All the while I cannot help but wonder if some of this has not gotten into my head. Anxiety has become a problem. Depression waxes and wanes. This is horrible stuff, and I feel for anyone having to go through this. It takes everything away. I do not mean this disrespectfully, but if losing my legs meant all of this going away, I would start cutting. I could adapt to that and keep moving.

You guys are great. gofl1, I have had a neck MRI. I wondered about that before, but thought the MRI settled that. Radiofan, really I am at a loss. I just do not know. Right now, I feel fine physically neck down. Neck up I feel unbearably bad. I do not understand it.

I am getting over myself. Still miserable. It is the darn head symptoms. The rest is small at this point. Got to figure out the head symptoms. The rest seam small compared to this awful sickly pressure in my head. I went back through my tests. Goodness, there are many. Everything is negative or good, except two ANA tests where I test positive. One is a low positive, and the other is just positive or negative. It looks like I am missing some more specific tests. Only one seams like a real possibility to me. I have a low abnormal c protein test, and high (not especially high) sedimentation rate. If I was not so symptomatic, I would dismiss those as "that is just me". There is enough there to say that something might be wrong, but not necessarily, and nothing in particular. I suspect Sjogren's. I want to get specifically and thoroughly tested for it. I also want my head checked out more thoroughly. Dustbunni, ths has bee bad enough at points where a "normal" person would be recommended to go to the ER. This little hospital doesn't know what to make of all of this. They can't help me. They cannot spell dysautonomia. The last time I was there with crazy blood pressure and heart rate they tried to give me nitro. I have learned that me and nitro do not get along.

All of it is worse today. I think there is something else is going on. I am still restricted to the single position, but it is bad just laying here. Sound sensitivity is bad. Pressure/Pain is bad. Dizzy, sickly. Can't think. My arms have gotten very weak. Face is very hot, even to the touch, but no fever. Can't even move my head without paying for it. This is all just laying here. That is all I have done today. Is this POTS?

I have had an mri. The brain mri did not show anything at all. Which is good. A lot has changed since then, but it was not that long ago. I have not had a blood volume test. I would like to have one done. I have considered that to. I had lost a lot of weight, but I have been gaining it back little by little. I will ask my cardiologist (or try to), to get me in for that. If that could make a difference, that would be great. Any improvement would be great. I have some exercises that my sister put together for me. She owns a gym, so I figured she could come up with some that I could do. My goal was to be at a target weight and start Monday. I do not think that I will be quite there, but close enough. I do not think that this is de conditioning that is exaggerating this. Maybe I am wrong. I am still relatively toned. I lost some muscle mass, but what I have is tight? I am starting to suspect that POTS is part of something more with me. I want Sjogren's to be explored more fully. I have had a swallowing problem, and I just figured out that my swallowing problem is my parotid gland. What saliva it is secreting is very thick and stringy. I am starting to wonder about cerebral vasculitis (sp). I am also wondering since there are mechanisms that regulate blood flow to the brain, if they have failed. Otherwise I have not had an autonomic failure. I still have my blood pressure and tachycardia response. It is trying. lol. Not failed yet. Nock on wood.

Thank you again Dave. I do have a good doctor. I do like him. I like Duke. I have started messaging him trying to communicate what is happening. My gap is not having a local doctor to fill in the gaps. The local small town guys do not seam to want to touch me with a ten foot pole. They just do not know. I do not know. I have put myself in a bit of a bind.

I have a problem, and I know that I am not the only one. I just can't place my presentation with anyone else's. There is a lot of intelligent people on here, so I am going to mention some things going on and see if anyone else understands this. I am convinced that I am not getting enough blood to my brain. It doesn't matter. If I stand up, sit up, whatever. My cheeks and lips go numb. I get dizzy and very sickly. I am 100% restricted to the bed and in a single position. It takes me an hour to recover from going to the bathroom. I get low pressures standing up, and confirmed by two TTTs. But, soon after it gets high and sometimes very high. And still, I get the heavy chest pains and all of the symptoms of the low blood pressure. If I stay up for just a short length of time, and even after I lay back down . . . .my arms and legs get weak. I still have the fascial symptoms. My head pounds. Then I get these fading in and out spells which leads to what seams to be a total shut down. Everything goes dark. I am unable to breath. Me esophagus spasms and locks up. And of course my heart starts pounding. Not just fast, but hard. My blood pressure gets up around 180/120. Sometimes a little higher or lower. About the time I think I need to get help, it starts to ease. I do not understand these spells. And I have to be able to get out of bed without all of his drama. A son had a solo in his chorus concert tonight. Guess who was at home with his heart racing at 180bpm. I cannot lay on my sides. At all. My breathing gets labored. My heart starts acting up. And oddly something at the base of my sternum starts throbbing. Often my other side begins to hurt. If I sit up, and especially if I lean forward. My blood pressure really climbs and will until I relent. All the time I am getting the head symptoms. I am convinced that I can give myself a stroke, just my sitting up and leaning forward. I have checked it time and again and it does not quit climbing until I chicken out. Also, this act causes me to reflux. I get the acid in my mouth 100% of the time. With this I always get a sharp pain in my right side. In the middle of my ribs. A sharp pain. Can anyone relate with any of this?

You need to wait for Psalms answer, but what I have been doing is to go back and lay back down. Let everything settle back down, and then put it on.

One thing I am sure of concerning the Mestinon is that it improved my heart rate , but increased my blood pressure.

Chaos, I do not think my episodes are related to the Mestinon now. I do not know what to make of it. I am starting to wonder if you can have a failure of the auto regulation of cerebral blood flow without having any complete failures otherwise. I cannot sit upright. Ever heard of this? Now I am symptomatic laying down. I do not know what to make of it. How can someone improve blood flow to the brain and not have low blood pressure? If that is indeed what it is. I do not know. Something new is going on. I thought I was I bad shape before. I am trying to look the stuff up, but having trouble staying focused. Thankful for spellcheck.

I think it is encouraging to hear the "success stories".

Welcome Jacinta. I know enough to be misleading, so I will refrain. I do think the tests that you have had done are very interesting.

Tracy that was encouraging to me at least. Are you able to exercise freely now? Really, good for you. Congratulations. I wish that for everyone here.

BigSky, there is no certainty in any of this is there? I do see plenty of reasons to think it is possible. And many see improvement. Then some do not. I cannot help but wonder what category I fall in. Right now, I am just looking for improvement. Any improvement. My very good neurologist told me "We are working hard and hope to find answers for you. Then we hope to get you feeling better." That is not encouraging or discouraging to me. I do appreciate the honesty. Unfortunately POTS seams to just be part of my presentation. I think that matters concerning the likelihood of getting better. One moment I wonder to be encouraged that POTS is just part of it, and the next I am discouraged. Regardless, it is what it is. I want the truth. Until then, I am trying to make a single improvement. Just one.

Chaos, I am kind of sorting through treatment myself. I hate that because I am not qualified. I was really encouraged by the Mestinon. I had improvement the next day. My heart rate was better than since this stuff started. I was walking around all excited about some relief, and them BAM! I got put down and I was on a roller coaster. Face went numb, loss my color, legs tingling, horrible chest pains, blah blah. I did not take anymore that day and started again the next. I really thought it made an improvement. The next day all of the weird stuff came back and lasted all day. Was really bad. That is when I posted my question. I took my dose yesterday morning, and I got bad again. I stopped and by the end of the day I was better, but it came back last night. Then I have struggled today. Mestinon or not? I am starting to think not. I was liking that it seamed to restrain my HR without making it too low. It was the first time in a long time that my HR at rest was normal. I am playing with one thing at a time. I can't make sense of one thing alone. I want to see improvement and then see if I can get more improvement.

Thank you.

Thank You. I quit it to know. I am starting to think that there is more to it than the Mestinon, but is hard to say yet. This stuff takes so much time to figure anything out. There is so much ups and downs in it anyways.

The arms raised was brought to my attention when I mentioned particular trouble washing my hair. I put it to the test and asked my wife to wash my hair. For me it is not the raised arms. Just the warm or hot water on my head gives me grief. It is something else for me and I do not know what that is.