gjensen

I accidently took my medication twice. This will be a long twelve hours. Diltiazem is the drug.

barb10, no concealer for me. I have try to hold onto what little dignity I have left. lol

Praxxtor, what does your TTT results look like?

I am mainly curious about what your BP and pulse pressure looks like upright.

I lost weight. I have gained some back, but can't get back to where I was. I am darker around my eyes to. I would like an explanation to why this is common with us.

I agree with the above question. I would want a skin biopsy and a Qsart test.

I could not tolerate beta blockers for other reasons.

Can you talk to your doctor about other options? Clonidine was better for me, but a different beta blocker might do the trick for you.

I am sorry that you had this experience.

It is difficult to know exactly what happened. It does not seam like a mast cell reaction to me, but I could not say that it was not.

I do wonder if the high blood pressure is not a response after, rather than part of the actual event. I dare not speculate too much, because it isn't helpful.

Personally, I would want a 30 day monitoring to see if I could catch a similar event. I would at least discuss it with my doctor.

I am sorry that I do not have anything helpful to add.

I hope that you continue to have success with it. Any improvement is improvement.

Rachel, I wish that I knew something that was helpful.

There are some medications that I tolerated before that I cannot tolerate now.

I could not tolerate Mestinon from the beginning. It was no fun. I tried it 4x to give it a fair shot, and each time was like riding a roller coaster. But it was no fun. I was disappointed because so many benefit from it.

I have never had the test, and I know little about volume. I am no help. I will be counting the days until the 18th for you.

I would be interested in hearing the results. As much as I contend with over activity, I would wonder if I wanted to stimulate anything. LOL.

I do not have some of the challenges mentioned, but I am certainly more sensitive to temperatures on both ends.

In the heat, my OI is definitely worse. It does not take much of a chill to get me shaking like a leaf in the wind. It can even be pretty dramatic. I do find myself trying to maintain a tighter comfort zone. This symptom has bothered me some, as I was very active and took some pride in being able to tolerate extremes.

My challenge has been a feeling of being overstimulated, and then I am vulnerable to a surge of sorts after. I have had a couple incidents that concerned me.

Maybe another challenge is just the feeling of not being as fit. Possibly a guy thing. I have to be more selective than before, and there are limitations.

I would only encourage to continue to find a way, and to try not to let this illness take that from you two. I realize that may be easier said than done.

Concerning the comments your husband has made, we do have this silly need to be needed. Consciously all of it can be rationalized, but there is no switch to cut the feelings on and off. He may struggle between a desire to be considerate and the feelings he cannot help.

I am sorry the two of you have this challenge. The intimacy is important, and especially when you are young. I hope the two of you can continue to find ways to enjoy each other. For you and him.

This can be a touchy subject, so I hope that I have said nothing out of the way.

Mine is present most of the time. I can overlook it much of the time. It can get especially uncomfortable in the evenings. Periodically, it can be especially difficult to tolerate. It is often at it's worst at night, or after some activity. Like all of my symptoms, it waxes and wanes.

At it's worst, I could liken it to a sunburn that was getting rubbed with sandpaper. At it's best, like a mild sunburn.

I can relate with your frustration.

POTS is just a label for a collection of symptoms. Finding the cause can be elusive. Some of us never find out why. I know that mine is in the setting of small fiber neuropathy. Why do I have neuropathy? I do not know.

I hope that your appointment with the neurologist gives you more satisfying answers and information.

POTS can be considered primary if there is no known cause. POTS is secondary when what is causing the POTS is identified.

I have been on the subject of headaches lately. I get a variety, and I call each something different. There is often different triggers that I associate them with.

I do not get joint pain.

Do you take antacids like Mylanta? Do you know your blood PH?

Swollen tongue can be a symptom of a lot of things.

Have you had your urine protein levels checked?

I am happy to hear that you feel that you are in the right place.

It sounds like you are having a tough go of it, but you are keeping your spirits up. This is a new beginning.

I have not commented, not being certain what to say. I am following, and am praying that better days are ahead of you.

I agree with the recommendation to trial a single medication at a time. For many of us, our symptoms are up and down, and it can take some time to know how helpful (or not) something is. This illness requires patience. You can get dizzy chasing your tail.

Do your best to manage your emotions in all of this. I had a hard time accepting this, and the roller coaster made it worse. I am learning to accept this and to try staying level headed. I tend to do better when I am doing better, if that makes any sense. There is only so much we can control, but we can make it worse.

Avoid comparing your situation to any one else's situation. We all have a lot in common, but we are all very different.

Make a couple friends that have this, and that you can relate with. That is particularly helpful if they are generally positive. It is hard to be positive all of the time, but the negativity can become a burden all of it's own.

Clonidine was helpful for me. I have neuropathic POTS, but I do get spells of being hyper.

I hope that your appointment is productive, and they get you going in the right direction.

I know what the sleep episodes feel like. I have had some nasty spells with that. Fortunately, I have not had that problem in some time. I hope that yours does like mine did and leaves. The no sleep made everything much worse, and it became an ugly cycle. Once the cycle broke, and I was able to get sleep, I returned to baseline.

For me the more tired I became, the more trouble I had with my sleep problems.

Typically I am not a fainter, though I have. A hot bath is not an option for me. I had a hard time giving hot baths and showers up.

I do not do well in the cold either. The heat gives me grief to. I am always looing for just right.

This will turn back around for you, so keep your head up. I know that it is tough.

Good luck.

I get a burning sensation from the top of my feet, through the calves, and into my thighs. Often it does include both forearms, and most recently my abdomen. It can get particularly uncomfortable. Burning is not a good word for it, but it is the best way I could describe it. For me it would be closer to dipping these sections into hot water.

I have attributed it to my SFN, but that is my guess. It has been suggested as a possible cause.

Rapid dramatic changes give me grief.

That is good and bad news. I wish that you could have heard all good news.

Are your symptoms well managed?