I went to the cardiologist today. I’m on an event monitor and I had an event the other day, very scary, had VT for 12 beats, heart rate was at 186.
So I go to see him, and coupled with the tilt table findings (heart rate went up to 120, bp went down just a little) he said ‘I have Postural Orthostatic features’.
Anyhow, he prescribed Midrodrine at 5 mg 3 times per day and 5 mg of metroprolol to see if it will help. I am so frustrated because I don’t want to be medicated for any reason, I have a hard time taking my migraine meds half the time because I hate how it makes me feel. It also solidifies the fact that there really is something wrong, a fact that was easy to brush aside before as just ‘fluke symptoms’.
He didn’t seemed convinced the chiari and the postural orthostatic are related. He wants to possibly do an EP study to see where the tachycardia is originating from.
Does anyone else have a similar story? What do you take for POTS?
Sleepbree
welcome to CM and POTS. just like CM effects all of us differently so does POTS. Currently for POTS I am taking florinef (SP) .1 mg 3x day (2 in AM 1 in PM). I have some resources on another computer that I will post for you later that can help with this. With an EP it might be good but with POTS it probably will not find the root cause of the tachycardia or so it was my case. the Florinef does not give me any side effects so it might be an option. I will try to get those resoources to you in a bit. 1 thing I do remember is try to increase your fluid and salt intake this can decrase the symptoms of POTS, Hope it helps.
Mike
Thanks for the replies! I have been all over Dinet looking at what I should be doing and preparing myself for the visit today because last week I ‘failed’ the tilt-table. I wasn’t scheduled until Oct 3rd to discuss the tilt test and the monitor, but I had that episode and since had chest pain/discomfort. He did say he wasn’t 100% sure about it just being POTS because I didn’t have a severe drop in pressure (106/70-something) and heart rate only reached 120 bpm. From what I have read it seems that is enough of an indication. That, along with the fact that he seemed wishy-washy on treatment and wanted to get in the lab right away to see if he could ablate something, really made me feel like he doesn’t see this a lot.
I live right by the Mayfield clinic. I mean, a few minutes away. Unfortunately they do not accept my ins. But I am going to call Monday to see if they have a referral to a cardiologist that deals with dysautonomia. Possibly I can have them review my records to see if they think it’d be worth a cash payment for a visit.
This is all really strange and stressful, and frankly depressing. It’s good to know I can come here to ask questions.
sleepbree-
I'm sure you're feeling a bit overwhelmed with this new dx, but if you're able to get into the correct dysautonomia cardiologist first you will hopefully avoid a great deal of hassel. Beeba is right on that one,
omes to POTS she is very helpfull. Before I was dx'd with CM, I was sent to 4 cardiologists(who all told me my tachycardia, etc, was simply anxiety) they all said there is absolutely nothing wrong with me. I was then sent to an electrophysiologist who preformed an EP study on me, and they could not find what was causing the tachycardia. After all that, my PCP sent me for a brain MRI and found the Chiari. Now my NS (whos supposed to be one of the best), tells me I have POTS and when I asked her for a referral to a dysautonomia cardiologist, she said that wouldn't do me any good. She says that the POTS will go away after I have the decompression surgery. Not sure if thats right, but I have no choice but to believe her. I'm just going to be this way dealing with the symptoms on my own with no meds, because I can not have the surgery any time soon. However, when they were looking into heart problems, pre CM, they put me on metaprolol and that made me horribly sick. They tried some beta blockers but i cant remember the names of those. They put me on bystolic for about a week and that seemed to help overall, but was still having the tachycardia just not as bad. i definately had more energy though, that was nice:)
Thanks for the replies. I decided to hold off on taking the drugs he prescribed until I get a second opinion, but I had another episode yesterday and they really scare me. They have looked at my heart via ultrasound and stress test and found nothing structurally wrong, and while that should comfort me in the knowledge that these bouts of tachycardia are temporary, when they happen it is very upsetting. I try not to panic when it happens, but it’s hard not to. Then immediately following I have chest pains, which the cardiologist feels is not unusual with this condition. I just don’t feel safe, and last night I just cried because I can’t shake this sense that something is going to happen to me. I’m calling for a referral in the am tomorrow, but I am having a hard time keeping calm in the meantime.
I agree with Beeba. Don't let any of our experiences scare you into not trying your medication. What works for some people doesn't always work for others, etc.. It sounds like you have a pretty good Dr. who was willing to dig a little deeper and search for an answer. All the cardiologists and even the electrophysiologist(sp?) I had all said there was absolutely nothing wrong with me and this went on for almost 3yrs. Can't tell you how many times I walked into an Urgent Care during a bad episode, and within minutes paramedics came in hooked me up put oxygen on me and rushed me to the ER, and nothing was ever found. I would give anything right now to find a good Dr. for Dysautonomia who would at least try me on some meds. My last episode was in the Nike store buying shoes for my son, it hit me so hard that when I tried to grab hold of the metal racks to catch myself, my hands were too sweaty and I collapsed. Luckily for me there was a bench to catch me so it didn't look to bad, but my Son noticed. I guess in my rambling round about way, what I'm trying to say is, it never hurts to at least try. Like Beeba said, if it doesn't work or makes you worse, let your Dr know so they can try something different. I know how scary it can be, and I am sorry you are having to deal with this. The way I always look at it is, it hasn't killed me yet and I'm not going to let it now! I hope I didn't offend, but just wanted to share my story with you to hopefully ease your mind a bit. Take care, and know that you're never alone.
I totally understand why I might seem strange for not wanting to take the meds. I went to the cardiologist with 3 meds in mind that I was willing to try: cymbalta, Wellbutrin, or Ritalin. I did all of the research on the meds first, and these were the ones that had the side effects I felt I was willing to tolerate. I have questioned myself whether I should wait for the second opinion and for me, this has been going on Long enough to where I feel like a week or two more is worth it over having potential side effects, having to titerate down off of them if they don’t work( which, from my reading beta blockers are a first line trial but rarely help) and then on to find another drug with a second doctor. I stand on my feet for 10-12 hours a day, and it has happened at work all but once. Fortunately, I have enough notice to sit. I get very hot and my ears ring. I am calling Mayfield in just a little bit to see if they can refer me to someone else to get a second take on all of this. Also, yes the stairs are scary but I live in a ranch and there are none at work. Not to say something else couldn’t happen but I’m trying to push that out of my head because making myself crazy with all of the different scenarios I’ve played out in my mind.