gjensen

I do better later in the day, but that does not mean that I do well.

When I am actually exercising, I feel improvement.

I have to. I do not have a choice. I tolerate the drug pretty good, and at low doses, I find it helpful. It is going up on the dosage trying to control the vasospasms where I start having trouble.

I attribute it to cerebral perfusion. I reliably get vasospasms first thing in the morning. As soon as I wake up. I am taking a CCB for it, and now that I am on it, what you describe is worse.

I am very up and down. If not for the vasospasms giving me fits lately, I would say that I have gotten better. I have done that before though. I had an entire 2wks of very mild OI. The two weeks before was awful. I have grown to look forward to the milder spells, and remember them when it gets bad. The flip side is that I always have the "dark side" in the back of my mind.

That is great. Sounds perfect. Smile and enjoy it. Congratulations.

Good idea. I will send you a PM also.

They decided against the test because of the risks. They considered the history convincing enough. I have been officially diagnosed with coronary vasospasms. It appears that for me, dysfunction in one place has led to dysfunction in another. My veins in the periphery are not constricting as the ought, and my arteries are constricting wen they should not or too much. Occasionally leading to all out spasms, that are very difficult. I am convinced that many of us deal with this on some level, but may not mean all out spasms. There was some clues all along that should have hinted at this for some time.

This process can be hugely frustrating. You are not the only one though. I agree with Robin in that small fiber neuropathy is reasonable to investigate. What you need is a good neurologist. SFN is not uncommon in POTS patients, and I would expect it would be considered more common if more patients were tested. There are a couple options that I know of in Florida. I have POTS and have had SFN confirmed by biopsy, a QSART test, and a QSweat test. Originally the SFN did not give me a lot of grief, but more and more, it is.

I would not compare the Qsart with bee stings. Maybe ants, on the mild side. It was barely uncomfortable. I would not worry about that one a bit.

What I see missing from this article, and others like it is common sense. One is that most of us experience a degree of increased sympathetic activity. It goes with the territory, and we know that these same receptors are part of the "fight or flight responses". Of course many of us will display some evidence or increased evidence of anxiety. That does not mean it is "Lymbic Responses". Then many of us have problems with cerebral perfusion. I am just guessing, but maybe that effects cognitive function. Particularly if it is a chronic condition. I know that I have experienced a change. I am not the only one that sees it. I have been asked about it by people that know me. Especially those that I communicate with in writing. Then I would like to see a comparison of rates of depression and anxiety to others with chronic illnesses. I am guessing that there would be a higher incidence rate across the board. Particularly with illnesses that are especially difficult to get diagnosed, and poorly understood. Also the article seams to assume that the only affect that POTS has is an increased HR upon standing. A review of the posts on this board shows a wide spectrum of symptoms, and many of us have them in common Some are difficult to tolerate, and even down right disturbing. I will use my coronary vasospasms as an example. Is it an example of sympathetic over activity? Maybe. There is a good chance, if not part of a broader autonomic neuropathy. Anyways, when you get a run of having them two and tree times a day, you are darned right to say it starts getting to you a bit. Especially when all of the doctors shrug their shoulders, and offer another pill. And to comment on getting treated with the wrong meds. Recently I had a respected doctor suggest that an SSRI, or SNRI could help. This is with a vasospasm diagnoses sitting in front of him. I do not know a lot, but I know that there are a few things that you do not want to give to someone with vasospasms. These are two of them. He also commented on Mestinon. Bad idea. Acetylcholine is what they use to diagnose vasospasms in a diagnostic test. (Now I know why I had such bad reactions to it). I could not possibly list all of the prescriptions that I have had written for me. My wife even started asking why I would not take any of the meds given to me. She started questioning me. It was difficult to explain why this or that was a bad idea. Her instincts were to trust the doctor. Mostly we can and should, but . . . I am sorry. I had to vent. I see a lot of complacency, and an inability to see past our own foreheads. That is how I see this article. Lazy and poorly conceived.

Eligiamore, that is a very interesting post. I appreciate that you shared this.

PACs, PVCs, SVTs, SV Couplets and Triplets, Pauses, Bradycardia, Tachycardia, Atrial Tachycardia. There is a couple more that I am not thinking about. rgny, I have to look yours up.

Thank You Corina. I hope so to. LOL. Rachel, thank you for asking. No, it is not a cause. Unfortunately. It is a symptom. A symptom that is as difficult to get diagnosed as POTS, it seams. I do see a hematologist tomorrow. I am at the Mayo Clinic in Jacksonville Florida. It is not far from me.

Thank you Hoop. I just finished with the cardiology consult @ Mayo. They want to increase the dose of Diltiazam and change it to the extended release form. They want to use this CCB to help control the SVTs as well as the Vasospasms. I hope it helps, I am having them two and three times per day. I do not enjoy them at all. When they get bad, they trigger the SVTs. They do not want to do the actual test for this because of the risk involved. The doctor acted like I was not a good candidate for the nitro (for breakthroughs). I disagree, but will go with the recommendation for now. If the Diltiazam is not effective, I will ask to change to Norvasc. It was mentioned today. My position is that most of my SVT runs is a result of the spasms.

I have described it differently than fun and giggles. LOL.

Mine was elevated and it was positive for the M protein. I see the hematologist Tuesday. I was scheduled earlier but I postponed it.

I have a chronic sore throat, and migraines. I never though to whether or not they went together. A sore throat was one of, if not, my first symptom. Then the trouble swallowing came. I have wondered about tick borne illnesses. It has been a wile since I have been out, but I would guess a hundred plus ticks over a year or two. I spent an awful lot of time hiking (off the trail) in the southeast. Lyme is not common here, but it is not unheard of. I always took these things in stride and never used insect repellant. Before I got sick (in the spring) I noticed an unusually high amount of ticks. I recall thinking about how bad they were early. I do not know a lot about Lyme, but I do know that there is more subspecies (that does not cause human disease) in the southeast than anywhere else in the States. Usually that points to origin. For example, there is more species/subspecies of rattlesnakes in the southwest (by far) than the rest of the country combined. Lyme here is not restricted to mammals. The green anole (a lizard) has repeatedly tested positive for antibodies to Lyme subspecies. They get ticks to, but not the tick associated with Lyme disease. I suspect that in time we will learn more than we know. I think the hype is hurting the credibility. I would not be surprised if more chronic illness is not found to be associated with different micro organisms. In livestock Mycoplasma infections are generally chronic. There are treatments, but effective cures are rare. Mycoplasma (neither a bacteria or virus) is notorious for evading the immune system, and going dormant. Then the affected becoming symptomatic during periods of stress.

I have trouble swallowing (which has been a little better lately), so I have gotten used to an Ensure first thing in the morning. I take it out of the refrigerator and let it warm up a little bit and it is easy on my stomach. Periodically it is a Banana smoothie in the morning. I try to eat something solid a couple to a few hours later.

I have what I believe to be PVCs everyday, and have not noticed a difference between seasons. My symptoms are worse overall if I am actually out in hot weather. I wonder what the connection could be to heart rhythm. I bet that you are not the only one, and hopefully one of them will chime in.

I would guess it is nerve pain. I am starting to get it. Even into the stomach etc. I had a positive ANA, and some blood protein abnormalities. After the hematologist, I want to see a rheumatologist. There is something going on, and my impression is that you need a new set of eyes. I really hope that you get your answers soon.

From me also, Sarah. I think typos are allowed hear. I hope so. My m key and h key is sticking. Then half of the time, I am only half here. Couple that with being a poor at typing, then not being particularly intelligent . . . I can make a mess. LOL.

Jadecat, how were you diagnosed? Have the CCBs eliminated the spasms, or do they help manage them? Which one are you on?

Hoop311, thank you for sharing that. This is a growing problem for me. I am on Diltiazam. I am seeing Norvasc more and more often. Diltiazam seams to help, but not enough. I do not think I can go to a higher dose. I need to get some nitro. I keep getting some severe episodes. I want it for a rescue option. How much are you prescribed? Is midodrine an alpha agonist? If so, I could see why. I have been wondering if calming the system down would help. Similar to what you mentioned concerning stress. I think we are dealing with the same receptors. I have had some very bad episodes where I pushed exercise too far. Your comment causes me to think back to those spells. That "too far" seams to be a moving target.

I do not think the sphincter and urethra contracting is causing the rest of what you are experiencing. I do not know what the connection is. Doesn't the vagus nerve control them? Have you ever had a monitor on when you experienced these episodes? How long do these episodes last?