gjensen

I am very happy for you concerning your job.

All of that can be, but it could also be other things. Have you seen a doctor that is an autonomic specialist? What have you had done and not?

What Andy describes is what I call my POTS chest pain, or discomfort. It varies in intensity from mild discomfort to being painful. It could or could not be relieved by lying down. Lying down and relaxing often does help. Separately, I get another pain that is distinct. It is more problematic for me. These pains come late at night when I relax. I will get periods of relief, but I can get caught in cycles where it occurs nightly for lengths of time. When I am in this cycle, it follows a circadian rhythm. It occurs while at rest, and if I sit up before it goes on too long, it may subside. When it gets bad only time and nitro helps. This can also occur for me waking up. If I am waken up early or abruptly especially. Any exertion in the morning can trigger it. I only connect the two by the symptoms. This pain is much more painful for me, mostly occurs at rest (supine), follows a circadian rhythm, waxes and wanes etc. I have had elevated troponin a few times when evaluated, but I have never been able to get it caught on an EKG etc. By the time I get there, it will have subsided. The irony is I will have it return once I get home to relax and sleep. The elevated troponin, the description and pattern, has caused a couple top doctors to treat me for coronary spasms. Unfortunately I am reacting to those medications. Nitro does relieve this pain if I take enough, but nitro causes me it's own problems so I am reluctant to take it.

First I am sorry that your daughter has to experience this. It is tough. It is not unusual for this to wax and wane, flare and remit. Often the flares are triggered. Stress is a major trigger. Judging by the latest research (and many of our experiences), it could be expected that our nervous system to go into overdrive when stimulated. It is that way for me. I work hard to avoid especially stimulating situations, and in particular, stressful situations. After being overstimulated, or stressed for a time, I do crash. Those crashes do last for different lengths of time. When I do crash, I try to maintain a certain level of activity because I can get stuck in that rut. I have to manage my lows to, but be careful. I can sink myself deeper. Pushing us is not helpful. We have to figure these limits and boundaries for ourselves. Some times it is time to just crash. I do everything this darned illness will let me do. There are periods of time where that is very little. Then there are times that it is a little more. It is important that we manage both the highs and the lows, staying as level as we can. She may need help moderating these highs. It could be that managing them will help her manage the lows. I could use some help myself, and I do reasonably well "holding it together". The best that I can do anyways. I would talk to her doctor about what you are saying here, and discuss whether or not there is some help for her to manage this. For now, that is all we are doing. Managing this. Each of us need help with different things. It is an unfortunate condition for a young woman to have.

I get deep shooting shocking pains in my calves. Not all of the time but for periods of time. I also go through periods of time where I have pain in my legs, arms, abdomen, cheeks, and forehead. This is a burning surface pain. Like a bad sunburn that someone is rubbing with sandpaper. I hate this pain, and look forward to breaks that I get. That it covers such a large area, is part of what makes it intolerable. Then I get POTS chest pain, then vasospasms that are difficult to tolerate. POTS headaches, and the occasional migraine. Something is hurting all of the time.

Smoking is a nasty habit, and I am a smoker. Of all the things I need to do, I need to quit smoking. One of my hang ups with quitting now is it does make me feel better. It does make my OI more tolerable. It is no cure obviously. Particularly for the young, I would not recommend picking the habit up to only manage POTS symptoms. There are safer ways of doing it. Not to mention that for some, it could make things much worse. I have a tolerance because it is a long term habit. I suspect that I would be made worse by it otherwise. For an example, caffeine is too much for me. Any stimulant that I have tried has been. I intend to quit, but I am nervous about quitting cold turkey. I suspect that quitting suddenly would be especially difficult for me to manage. I wish that I would have quit before I became sick.

This is wonderful. Congratulations. I am excited for you. I agree with the above advice. Hydrate especially well. Get plenty of rest. Where all of your compression gear. Most of all, just enjoy the experience.

Katy, when I first became sick, I had something similar happen a few times. Fortunately, I have not experienced it since.

This seams to a place that many of us come to. I have "fired" more doctors than I care to admit. I do need to go around. There are some things that I have to deal with. I have no choice even that I am not especially enthusiastic. Other than dealing with the most concerning necessary things, I have had my fill of this rabbit's trail. Goschi, if you prefer one of your previous POTS docs, I would return there. You know by now what you like in a doctor and not. If you have neuropathy, finding the cause of it is likely finding the cause of the POTS. That is just as difficult unfortunately. Could it be that seeing a neurologist that specializes in neuropathy would be a good option? Heck, I have nothing good to offer. I am in the same leaky boat, but I do sympathize. I hope that you find what you need and looking for soon. I wish that for everyone here.

Welcome everyone.

Goschi, not necessarily. However, my very worst times according to memory was also the most noticeable.

If I go too far (which I often do), I can pay for it for some time.

My arms/legs do this to. I never noticed it before I became sick. I also see the veins get very large, and then shrink. I look like I have varicose veins (mild) standing, though I do not. All of this came with the illness.

It requires a qualified neurologist to make the diagnoses, and initially, can be difficult to discern between Parkinson's and MSA. It is a multi system disease that includes autonomic failures, movement disorders etc. It's progression is fast. MRIs, PET scans etc. are helpful. Some might check neuro transmitter levels etc. There is some information on the disease online. Fortunately the very ugly disease is very rare.

artluvr09, I am sorry that you feel this way. I like to read and focus on something from my Bible. Then lying down in a dark room, and deep breathing. Remind yourself that all will be well. It is difficult enough to worry about what might happen tomorrow. Forget tomorrow, and just concern yourself with relaxing now. Take one step at a time, and worry about tomorrow, tomorrow. I hope that you feel better soon. I will be thinking about you tomorrow, and expect that it will go well for you. Regardless, appreciate and enjoy the opportunity.

Janet, I do not have anything helpful to add. I did want you to know that I have been following with interest. You mentioned a few posts back about a concern with supply. I would not let that be part of my decision making process, and separate that all together. It is the suppliers concern to be concerned with supply.

I enjoyed reading this. Thank you for sharing. You know you have dysautonomia when you can read this stuff, be interested, and understand it. Even through the brain fog. There was a couple points that I was not convinced by, but all of it was interesting.

I had a link to post, but am struggling to do it. If you google pulse pressure and POTS some things will come up. Hopefully a few ideas to discuss with your doctor will come up. It is not unusual with POTS so do not get concerned with the more concerning "typical causes". Some would say that if your PP gets as low as 10, or less, go to the emergency room. For me that is orthostatic and returns closer to normal when I return to supine. The typical POTS treatments other than beta blockers etc. could possibly widen the pulse pressure. Beta Blockers etc. could possibly lower it for some of us by reducing output? No, I do not think the low PP was typical for me early on. It is a change of sorts. It is certainly typical now. Again, I attribute mine to low stroke volume due to blood pooling. My POTS appears to be rooted in peripheral denervation? And again, I am no doctor LOL. This is only how I rationalized it for myself. I have not seen or received a solid explanation.

This is great to hear Andy.

Stephanie, I have a very low pulse pressure when standing or sitting up for long periods of time. Lower than the normal supine, but not anything noteworthy. I have not looked into this seriously, and I do not want to mislead. My initial thoughts has been venous pooling, stroke volume, and some compensation of some sort. I asked my cardiologist about it, and dismissed it initially implying that it could not be because my heart was healthy. He was thinking typical causes and not from a dysautonomia perspective. He is not a dysautonomia specialist, but he is learning LOL. My pulse pressure gets as close as 10 upright. More frequently if I am standing in one place for any length of time. 30 supine, and 20 sitting up any length of time. The closer it gets, the worse I feel. Regardless of the other numbers. I always have some drop in the systolic, more or less. Usually my diastolic raises, but not always. Sometimes they both drop in time. It varies, but the typical is as you describe. If you come to understand it, and learn more, I would be interested in hearing what you have learned.

I would say POTS is the result of peripheral denervation (SFN) in cases where it is present. Not the other way around. I would say to chase the chickens and eggs would be to discover (if it could be) what caused the SFN.

I am thankful to hear of those that have benefited from this drug.

He is not qualified to discuss the subject.

I believe that discussing this with an autonomic specialist, or a cardiologist (or EP) that takes a particular interest in this is critical. It is very difficult otherwise. As you know, medicine has evolved to a point where it divides into specialties and subspecialties. No one doctor can be an expert in it all. Many doctors have only heard of POTS. Forget about any other challenge when you are discussing this with a new doctor. It is relevant, but it is not. What you want is an unbiased work up, and evaluation. What does it really matter otherwise? Do not second guess yourself, to yourself, or to a doctor. You want to be evaluated for something specific. Expect it. If you have POTS, I wonder how much it contributes to the other. Many symptoms do overlap. Too much norepinephrine etc. causes real anxiety. Sympathetic over activity is real, and feels very real. I am sorry that you have the challenges that you do. I wish you well on getting answers. The ladies here are helpful, and have good insights. Good luck.

Some docs recommend it because of our circulation issues, and some do not. I was taking it, until I reacted horribly to it. BUT . . . I suspect a mast cell issue is/was the root of it. Don't take my experience in consideration. If you did, you would never take anything because it has been like that for me lately.