gjensen

I am having trouble telling if it is helping now, but I am sold on it. Up until this flare kicked in, I felt better than I had in a while.

Thank you very much. This goes along with I have started to suspect. If I could get a doctor to go along. I have small fiber neuropathy. Tested positive for autoimmune antibodies, but no specific test was positive. A Qsweat test showed abnormally low response in one spot and no response in another. Not to mention the TTT, abnormal swallowing test etc. etc. Still I have a neurologist acting as if nothing is wrong. My good spell is over. I am back to not being able to lift my head. Hopefully this flare will end soon. I felt good up to the "storm". It did build though. I knew it was coming.

Thank you Rachel. Licorice does seam to be helping. Hope, not like I know. Otherwise I would not be wondering. But . . .it seams that these head symptoms is what comes and goes the most, and what I am least able to tolerate. After my "good" spell, my head symptoms are back as they were. The head pressure, dizziness, ear ringing, sound sensitivity, etc. is very frustrating. If I could understand fully what causes this, and understand why it comes and goes . . . that would give me a chance to identify triggers. This limits me the most. The HR limits how much I can do. These symptoms keep me from doing anything at all.

Going into this my digestive system was a mess. With the onset of my POTS symptoms my digestive system got very slow, to not moving at all. The movement has improved while on clonidine, and one of the reasons why I wanted to try it. I am not bloating like I was and able to get more in me. Probiotics seams to have helped my with my other issues. Nock on wood, but my digestive system is in better shape than it was.

I am on day six of improved symptoms. Right now, I am giving much of the credit to licorice. Knock on wood, because I am due a crash. For the last six days my heart rate has been tempered, and my head symptoms have been tolerable.

Rebecca, every one of us has one thing in common. A need to feel significant. That is why a compliment feels good and an insult hurts. One makes us feel more significant and the other makes us feel less significant. The more significant we see someone that we are receiving either from, the more impact it has. It is unfortunate that some are in the position that they are. Doctors are in a position to send you home feeling encouraged or discouraged. More and more, I am learning to not care what a doctor thinks or not. They will have to earn my trust. Many do not deserve the position that they have. It seams that the length of time they spent in school somehow gives them a sense of entitlement. That somehow their work is done. All we can do is disregard that one and look for another. I do not leave without telling them what I think though. Not to be argumentative, but hoping to help the next guy or gal in line. I saw one today. Big mistake to see a doctor on Christmas Eve. I have a swallowing issue that is related to excessively thick ropey saliva. You would think that an ENT would be the doctor to see for that. Unfortunately, he knows to much about my other problems. He dodged dealing with it, claiming it was beyond his expertise. So I asked him. If it is beyond allergy shots or an ear ache you are unable and unwilling to help me? He said that is not what I said. I replied by telling him that I was saying that is what he said. He tried to say more, but I dismissed him and told him that I would find someone that was more qualified and willing to work. I left. I do not have time for the idiocy anymore. If I performed like that and worked like that in the business that I was in, I and my family would have starved along time ago. In my world you find solutions to problem, not bath in them or avoid them. The doctor you saw was lazy and lazy brained. She was not looking to investigate the problem and find a solution to the problem. That doctor is not worth your time, much less your emotions. And goodness. If there was any standard height, there would not be so much variety. Thank God we are not all the same. We might have all ended up like her.

I have a hard time making sense of this stuff. Last week I could not lift my head. This had went on a little over a week where I had my weird spells off and on. It started at the same time I tried mestinon. For the last four days my symptoms have been much more tolerable. I did go go back on the clonidine and have started licorice root. I have also been more religious about wearing the compression garments. I am drinking all of the water that I can handle. I do not know if what I am doing is helping or not. In time, I imagine that I will know. My symptoms have been fluctuating like this, but this may be my best spell. What does it mean and why do the symptoms fluctuate so much. I had one half of a day around a month ago where my HR was near normal. If my system can function near normal one day, why can't it on others? Right now I am thankful for the reprieve. I am not near back to normal, but I can tolerate moving around. It gives me hope that I can get better, but how long this lasts is still to be known. Any thoughts on the fluctuation of these symptoms would be appreciated. I go from POTS on the milder side, to unbearable. I do not understand.

When I have my spell my pulse pressures tighten and narrow. It can get a little too close and a little too far apart. It is up and down and eventually levels off. When I firt get moving around it will fluctuate and when I first go down. Eventually it levels out.

Rachel, you sound encouraged about some direction. I hope this leads to improvement for your son, and gives you guys peace of mind. I have to admit that this lead is interesting to me.

Thank you for bumping this up. I am very interested in watching.

One thing that I have decided is that I am going to get better. Period.

I lost a lot of weight leading into this, but it has seamed to have become more stable now. I did lose a very similar amount of weight in a very similar time frame. I did have digestion and swallowing issues though. If you have had no change in digestion and eating habits, I would wonder to. It seams that you would feel the adrenalin surges.

Thank you very much Melanie. What would you think about mine being instigated by me being upright too long, or when I am most symptomatic, by just sitting up? I had a bit of a break yesterday, but I paid for it last night and this morning. This is my most limiting symptom. I do not get worked up over the heart rate anymore. Like you, I am figuring that many of the most troubling symptoms is a result of hypo perfusion. That is if what I am experiencing is in fact that. Have you had any tests that showed this, or is your doctor going by your symptoms? If I could learn to make improvements on this topic, I will be much better off. Thank you for the tips.

I am in SC. Supposed to be 79 tomorrow, no wait, I think that is Sunday. Anyways it will be warm for a bit.

It was a beautiful and warm day. I was able to spend some time outside and upright. My heart rate was still "nutty", but my head symptoms was tolerable. They started getting to me at the end of the day, but subsided when I got off my feet. Anyways, I was thankful to have some relief. I will take what I can get.

I hope that this leads to solutions.

Yes. Good luck tomorrow. If I could get past these "brain symptoms". . . . I could do more. I can keep a eye on the heart rate. I do not get too worked up over that anymore. Just this crazy head stuff. I am very eager to improve that.

I am rooting for you. Good Luck!! I am looking forward to a day where I can make a similar announcement.

Yes. Do not be embarrassed for a moment. The truth is the truth, and it is what it is. The doctor is not going to think any more or less than he would otherwise. If you are concerned about it, it is worth telling.

Hate to admit it, but I do not think than anyone is considering much of anything. That is how I feel right now. I did try Bystolic. I stopped. My blood pressure tended too low, and mostly it aggravated my breathing problems. After all day of difficulty breathing a few different days . . . I said that was enough.

Peace, no one has mentioned that to me. That is very similar to what I experience. Sometimes I know it is coming. Other times I do not. Mine never stays either. And it tends to fluctuate. I think the highest HR and longest lasting might have hung around at 200 for a little while. I have peaked at around 250 twice. Like you, as it settles it tends to fluctuate. Up and down. I can't get some low readings in the middle of these spells. I can feel the up and down. I suspect one of those spells might come soon. I feel awful with the numb cheeks etc. Dizzy. I do not know how to explain it. I just get a weird sensation with the ears ringing louder etc. I wonder what the trigger is, and how it is associated with these sensations . . . I also end up shaking. During, but most often as it settles back down. As if I was cold. Sometimes I will feel cold, other times I will not. Well, you put a name on it for me. I will look that up. Thank you very much.

Well, I will have my hopes up to. Here is to hoping that you get continued improvement.

Elizabeth, I think that is a fascinating topic. I will be interested in learning more. I hope the new drug helps you. I might not have given it much of a chance. I get these weird spells, and one might have hit me as I was starting it. It is hard to say. You are obviously very bright. I have enjoyed reading what you have shared.

No one has gave me an explanation for anything yet. When I first had the high heart rates at rest, they alarmed me to. Suddenly my one safe place was not safe. The first one I had a weird sensation spread over me, and then BOOM. I checked my heart rate and it was 160 and my blood pressure was climbing. Went to the ER and all of that. It did not look like it was going to stop. It did eventually settle down. It happened the other day, and part of what motivated me to write this post. I was laying down feeling awful like I described. Then that sensation came over me, everything went dark, I quit breathing, had the swallowing sensation. My heart rate went up real high then. I do not get concerned about the heart rate and standing. I did at first, but it is tolerable. I will push it until it gets too bad. My head symptoms is what limits me. When I feel my cheeks going numb, I get off of my feet. The spells at rest bother me. A weird numbing doom feeling takes over. Sometimes I can tell that one might hit. Other times it is with no warning. My breathing stops and everything. Everything goes dark. Just momentarily, but the heart races for some time afterwards. Afterwards I always go through this chattering shaking spell as if I was cold. I have had doctors tell me it was anxiety, LOL. No. I do not think that I could get used to these spells. I do not like knowing another one will come sooner or later. I always wonder what it is and if it will settled own. It is a roller coaster afterwards with peaks and valleys. It always hits suddenly though. Very weird sensations accompany this. I think that I would have rather heard this was normal for this LOL. Under my finger nails stays purple pink now. My blood vessels enlarge in my legs more than they used to if I stand for a bit. That is all I have seen concerning these things. My lips become discolored and my face pale if I stand to long, or when I am having a flare like related to this post. My wife gets concerned about that. Dave, you will get better. You have the right mindset. If I had to bet on it, I would say that you will continue to improve. I look forward to hearing progress.

I thought that I had replied. but . . . I am with Dave. I am hoping for an upswing, and hope that yours continues. It is nice to hear that you are getting some relief. For me . . .today was better than yesterday.