gjensen

I agree that it should be checked out an ruled out. It isn't as if we do not have a circulation issues.

I do not have Raynauds (I do not think LOL.). Vasospasms might be worth discussing with a doctor. Hopefully you have an open doctor and one that has a good understanding of vasospasm. I was surprised (should not have been) by the inconsistency. All had a basic understanding, but most were not up to date. The Mayo cardiologist has been the only one that is up to date. Most were clearly wrong on some important points. You can have them with and without ECG changes. In an ER they are usually looking for ST elevation, but it is often associated with ST depression. You can have them with and without enzyme changes. Some do not get diagnosed until they have heart damage, and everything else has been ruled out. It is difficult, because no one will test for it now. No one I could find. There is some risk with the test. Sometimes it can show up during a Cath. They see the artery spasm, but unless it happens in front of them . . . I would suggest being cautious about assuming the chest pain is vasospasm. Chest pain is common among POTS patients, but vasospasm is not. It does occur with POTS patients. I found a half dozen that have confirmed diagnoses. Someone mentioned sympathetic over activity earlier in this thread. It seams that can cause them. There is a relationship between the spasms, and the alpha receptors. They rarely treat vasospasm with beta blockers. Vasospasm can occur with those that have anxiety/panic attacks. See the overlap? I wonder with me if it is not a response or connected to deficits elsewhere. Then I wonder about norepinephrine levels. Exertion is a trigger for me. Especially after laying back down. Waking up is a trigger. Hyperventilation is a trigger for me. It is common for people with spasm to complain of sub sternal chest pain. For the general population, they are most common between midnight and 8am. That is true for me, other than my triggers. I get a lot of chest pain, and I have become reluctant to call all of it spasm. Outside of spasm, I am unsatisfied with the common explanations for our chest pain.

Is the calcium channel blocker helping with this? Yes, and no. If that makes any sense. They tried upping the dose, but I could not tolerate it. I was getting runs of SVTs with this, and I have had none on the medication. I am on Diltiazem, and another might work better. Usually they do. Diltiazem helps with the HR and rhythm issues though. I need to do better, but all of this for me is not spasm. I am starting to be able to differentiate what is and is not. What I cannot get a grip on is the chest pains that I get when I wake up. They seam different than the all out spasms, but are severe most days. They last anywhere from 30 minutes to 4-5 hours. If I do any moving around, it gets worse so I am bedridden until they subside. I have had less concerning spells while on this medication. Also when I feel the medication taking effect, I get some relief. It is only temporary, unfortunately. Mixed results.

They way I understand it, for me, is my neuropathy is the cause of my POTS. No cause has been identified for the neuropathy. The pain came later, and has become worse over time. The pain has been tolerable, until recently. I am not familiar with the connection between EDS and neuropathy.

Concerning objective/subjective impairment. I agree. There is a lot that we do not know, or have the ability to quantify. Concerning the possible exaggeration of our symptoms. I do as much as this darned illness will let me do. Sometimes I go too far. I do not have to pull back, it puts me back. Like Corina said, I would love to be healthy again. I would love to have just a week of what I was. If I could have that one week, it would be the best week of my life. It is certainly possible for us to get in a rut. We should be mindful of that. Still we should be realistic with our expectations. We should always push to do what we can, even when it could be uncomfortable. We also need to be careful about going too far. Too far is a different place for each of us. It is also helpful to keep in mind that we are not all the same. Some have challenges that others do not. I believe that this could be a helpful subject to bring up. If we are honest with ourselves, and keep trying, we would know. I wish that I was exaggerating my symptoms.

Sleepy Lady, I now that feeling. I do not know your situation but I can relate with how you feel. Do you have a doctor that you feel good about. How are you being treated? I have come to the conclusion that managing this illness is about a series of small victories. I do not have any practical experience with the monthly thing, other than living with it. LOL. I see that the ladies comment on it. Try not to let it beat you down. When it gets too me, it all just gets worse. I end up in some sort of sympathetic overdrive. Everything becomes exaggerated. X2. I wish that I had answers an could make it go away.

I still consider getting one, but it would have to recline. I would like one for doing things I cannot do now. I do not want it or need it for around the house, except maybe on the worst of days. I want to do all that this illness will let me do. I would like to do things with my family that I cannot do now.

If they would help me, I would take them. LOL.

I have been considering the same. I have been trying to figure what I could be good at, what I could enjoy, and what I am able to do. Before I became sick, part of my hobby was propagating plants. I have been trying to get the process more automated, and considering trying to sell a few here and there. I am looking at the possibility of a part time effort. A little extra. I do not feel comfortable making a serious commitment right now.

I have peripheral neuropathy, but what I experience is different than that. At least it behaves differently, but none of us are the same. I am no help. I would want to discuss it with a good neurologist and have it thoroughly investigated. Do you have any other health concerns?

Thank you for sharing this article. Clonidine was helpful for me.

Thank you for posting this. This was good timing.

Yes, I have had similar symptoms. Fortunately, I have note experienced this in some time.

Raisin. I have been checked a couple times and have been normal to low normal. I have never been checked "correctly", but I know enough to know that I am not classically "hyper". I do not doubt that if you checked me 10 times, that I might meet the criteria once or twice. I do have "episodes". They used to be more common, but have become less so. Physical exertion can be a problem.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2998866/

I do not think that I am hyper Pots in a classic sense, though I can be. I have SFN, and I do not know where that might play a part. There are two things that leads me to believe norepinephrine can be a trigger for me. One is exertion. If I go too far, I can get an adrenaline surge, and spasms to follow. The other is that I reliably get them upon waking. A time when the cortisol levels are highest. Just my own theories of course. I am very confused about all of this. They are still not managed well, and I go through this every day. Occasionally I will have a good day. This morning was especially bad. Scary bad. I doped myself up (LOL), and am doing better now. Hoop, I understand the frustration.

I think high norepinephrine is one of my triggers.

Swallowing was my very first complaint. Some of it was muscle control. Then I had a very dry throat, and excessive mucus secretions. It was a three part problem. I did have an abnormal barium swallow test. Fortunately, I have seen a lot of improvement. CCBs are used for esophageal spasms. I am on one, and it has not dropped my blood pressure much at all. Not on starter to medium doses.

Has anyone here been prescribed a statin, in particular Lipitor?

Of course.

I did 2 1/2 miles yesterday. but it was a bad night for spasms. Today, I have been semi active outside most of the day (with breaks). Other than first thing this morning, no spasms today. We will see what tonight brings.

I will keep trying. Fall will be here soon. It is good for me to get outdoors, and good for my sons to do that with me. I hope that as the years go buy, I will be able to do more. Like all of us.

Sarah, I would like to know how your appointments went. I do not know that I will go back to Mayo, and it was Jacksonville. I have a cardiologist there that is helping me try to manage the vasospasms. My resting HR is excellent, and if I am relaxed it is 58-62. Sleeping 45-50. Upright is from 95 - 140. Some 170s, but the CCB has it tempered and I am not seeing it above 125 often. The highest orthostatic tachycardia recorded was 220, but that was early on. I do not know if I have expectations anymore. I guess I do what this lets me do. I am trying to figure out what it will let me do. Obviously it will let me go for walks in spells. It does not seam to let me exert myself much at all.

The hours spent in the sun was before I got sick. Generally about 8. I just started the supplement yesterday.

I pulled a couple more off, but tempered my expectations. We will be here in the high 90s for a few days, so I will keep it to my yard walks. Mayo is saying that I need to temper my expectations. I do not get the encouragement to exercise and the advice to limit the exercise. The vasospasms have been giving me fits. We upped the dosage of CCB, but I quit it pretty quick. Anymore, and I could not crawl anywhere. Mayo is adding a Statin, Lipitor. The idea is that it improves endothelial (sp?) function. I have not started it yet. Maybe tonight. I never look forward to a new medication, and the potential reactions. If I could get a grip on this, I could possibly be much improved. So much of what was giving me the most grief is not as bad. Right now the spasms, and associated arrhythmias is the big problem. I tried to cut a couple stumps (very 3"/4" small stumps) with a chain saw. It only took a couple minutes. It had my HR soaring at 200 and whatever else was going on (spasms?) was not good. I do not understand the reaction to minor exertion. Is that normal for POTS? That is a complete update, I think. LOL. I appreciate that you asked. How are things for you?