flyingsquirrel

I "pushed through" my tachycardia and kept running a couple of years ago and it put me into the early stages of heart failure...at age 27. Once we realized that this was what was going on (tachycardia induced cardiomyopathy) I recieved strict orders from my old cardiologist to stop running until we could get my heart rate under control. Thankfully this is a reversable condition, but now I'm getting crap from my new cardiologists for being "deconditioned". I feel like I have to prove to them that I'm not deconditioned and prove to them that I actually do go into heart failure because they don't believe me (or my medical records). Good thing I like running.

I was seen in Rochester earlier this year. I live nearby so my appointments were spread out to fit around my work schedule. I have nothing but good things to say about autonomic neurology (I saw Sandroni), sleep medicine (Altchuler), and everyone who did the testing. Cardiology, which is where I spent most of my time, I don't have good things to say about. Mayo seems to be good at POTS. But I don't have POTS...I have a different autonomic problem (which had already been diagnosed but wasn't being effectively treated). My autonomic neurologist picked up on it right away, but because it was confined to my heart, she sent me back to cardiology. Cardiology basicially stopped taking me seriously as soon as they (re)discovered I didn't have POTS.

No problem. I don't know anything really about palinopsia so thanks for the info. The eye-based floaters are really kind of interesting (I think). The most common ones are due to age-related degenerative changes to the vitreous humor. Pretty much everyone (eventually) gets these. When we are fetuses, the central retinal artery continues through vitreous humor to the lens of the eye. By the time we are born, the intraocular portion (called the hyaloid artery) has degnerated and the artery "ends" at the retina. In most people the path that the artery took (hyaloid canal) also completly degenerates, but in some people it doesn't and this is what causes most floaters in young people.

Floaters caused by something in the eye (as peregrine described) should only be visible in one eye or should be different in each eye. If what you are seeing is exactly the same in both eyes, it is most likely coming from the brain. It doesn't sound like this is what you are experiencing, but ocular migraines (sometimes called acephalgic migraines) can often initially present as bright squiggly lines that are the same in both eyes and eventually complety obscure the visual field.

For me it's all symptom driven. My "target numbers" are the same as someone without IST and not on beta blockers (or calcium channel blockers). Back when I was on high dose beta blockers and actually had good heart rate control (and therefore couldn't get my heart rate up to my "target") I just ran a distance and speed that felt like a good workout. Now that I'm on a much lower dose of beta blocker (and many other meds) I have poor heart rate control and am often over my "target" by the time I finish tying my shoes. Again, I just run at a pace that feels like a good workout. If I start to get chest pain or short of breath (more than just from running) I ease up. I also try to keep my heart rate under 200.

Noise doesn't particularly bother me, but I've always been hypersensitive to touch. I involuntarily twich when someone or something touches me (I blame the catecholamines) and I find many light touches (especially repeated ones) to be physically painful. It took a while for my finacee to undersand that one. Because of the muscle spasticity from my cerebral palsy, I have to either take drugs that make me really dopey or get regular massages (tough choice, I know), but initially it was difficult to convince my massage therapist that she was hurting me more by pressing lightly.

nadolol 40-80 mg daily, controlled my heart rate great, but caused intractable bronchospasm bystolic 10 mg daily, didn't touch the tachycardia, caused hypotension, made me wheeze atenolol, 12.5 mg daily, works so-so, only makes me wheeze a little, splittling tiny pills is near impossible and ends up with just a pile of powder...but I found a compounding pharmacy that will make me capsules (or an oral suspension) of my exact dose.

A difference of up to 15-20 mmHg systolic (top number) or 10 mmHg (bottom number) is considered normal, especially if this difference is always present. Usually the right arm has a higher blood pressure than the left because the arteries that supply it branch off the aorta first and therefore recieve more foreceful blood flow. A greater (chronic) difference could be a sign of arteriosclerosis (harderning of the arteries) on the side that is higher. This is obviously much less likely the younger you are and could also just be a normal variation. If you are worried about this, you could ask for a referal to preventative cardiology. A greater (acute) difference is definately a cause for concern (for aortic dissection), especially if accompanied by loss of movement and/or sensation to the limb that is lower. This is usually a VERY large differerence and you should get yourself to an ER ASAP.

Inappropriate sinus tachycardia (IST) is a confusing name of a syndrome and refers to a specific set of symptoms: high RESTING heart rate, inappropriate rise in heart rate to MINOR EXERTION (not necessarilay standing) ie walking, over-sensitivity to beta-adrenergic agents (ie isoproteronol, epi, albuteol), and a decreased cardiovagal reflex. While there are some people who have both POTS and IST, it seems that most people with POTS do not have IST, and some people (like me) with IST do not have POTS. To make it very simple, POTS is inappopriate postural tachycardia, IST is inappropriate exertional tachycardia.

I know exactly what you are talking about...I get it all the time. When you sit/stand up your heart has to work harder to pump blood up to your brain due to the effects of gravity. In "normal" people, this reflex works seamlessly and you never notice a decrease in cerebral perfusion. However in those of us with autonomic issues, this reflex can work more slowly, hence the dizziness from a decrease in blood flow to the brain. The hearing problem is even simpler. Your internal carotid artery (the main artery that supplies your brain) passes through your skull within millimeters of your inner ear. When your heart is trying to "catch up" and pump harder and faster to get blood up to your brain, all you can hear is the pullsating blood in your carotid artery. I hope this makes sense. Basically, it is all a completely normal compensatory mechanism that everyone has. The only reason we can feel it is because ours is slowed down and therefore more pronounced.

I'm new here, but I have had IST for a long time. IST is tricky to diagnose because it consists of a relatively high resting heart rate (which can still fall in the "normal" range for some people) and an inapproprate rise in heart rate to even the most minor exertion (walking, eating, etc). This is caused by overactivity/hypersensitivity of the cardiac sympathetic innervation and/or a deficiency in the cardiac parasympathetic innervation. Tilt table tests should be negative for a diagnosis of IST, although people with IST will be hypersensitive to isoprotenonol (my last TTT they used less than 1/4 the normal dose and my HR was over 180 before they stood me up (and I was still on all my meds)). Non selective beta blockers are the first line treatment, however such a high dose is usually required that some people cannot tolerate the side effects. Good luck if you decide to go to Mayo...I didn't have a great experience with cardiology there. They kept wanting to treat me like a POTS patient and when my testing didn't fit the POTS profile (because I don't have POTS) they pretty much told me it was all in my head (despite years of documentation and a soild IST digagnosis.)