Krissy21

A normal resting heart rate is 60-100 bpm so 96 wouldn't be considered tachycardia. However, whenever my hr is in the 90's I also feel like it's beating too fast, especially while trying to sleep. But a bp of 142/100 is pretty high and I would imagine that would make you feel strange. I can't speak from experience on that since my bp tends to run really low. I hope this helps answer your question.

Yes I had my appointment with him on the 12th. I liked him a lot and definitely felt like he was really listening to me. He is scheduling me for a tilt table and a stress test for when I come home from college in a couple weeks. He said after we get those results he may order more tests or try some new medications. It does seem like he wants to figure out what exactly is going on before deciding on a treatment. He did tell me to eat 5 grams of salt a day, drink a lot of Gatorade, wear compression stockings, and keep taking my beta blocker. I have done the test with the tube that you mentioned, but I didn't have any reaction to it. It was part of the autonomic reflex test. I've been going to the Cleveland Clinic for a while and they have been awesome so far so I'm confident that they will figure out what is going on and how to help. I hope you get your results soon so they can figure out what's going on and how to help!

Haha yeah I've heard that the tilt table is not much fun at all. I agree, Dr. Jaeger is definitely the best doctor I've been to so far. I have a low bp too but I do okay on a low dose of propranolol. I just have to stand up slowly so I don't blackout. He mentioned florinef when I saw him too but he wants to wait until after the tilt table test to try out any new meds.

Hey margiebee! I am also from Ohio and I'm being treated at the Cleveland Clinic. My dysautonomia symptoms started when I was 16 but got much worse when I started college, and I wasn't diagnosed until I was 20. So I'm pretty new to all this stuff too. I just saw Dr. Jaeger last Friday and he gave my a lot of info and ordered a tilt table test that I'll get when I come home from school in a few weeks. I have most of the same symptoms as you. I take propranolol, a beta blocker, which helps a lot with the high heart rate and palpitations. As much as I hate them, I wear the compression hose too. This forum is great and I've read a lot of good advice on here over the past few months. It's also nice to see that other people are going through the same thing and know what it's like. I hope you get more answers and are able to try some new medications soon!

I had an ablation done in December 2011 for SVT. I had POTS symptoms then but was not yet diagnosed. It did not make my dysautonomia better or worse but it completely cured the SVT. I was in SVT almost everyday that lasted anywhere from a few minutes to over an hour. Between that, POTS, and also IST, I was miserable and really couldn't function. So for me, the ablation was worth it just to get rid of the SVT. I was told by my doctor that ablation of the sinus node is what can cause the dysautonomia to get worse but ablating an accessory pathway that causes SVT is relatively safe. He said he was very careful to stay away from my sinus node during the ablation for this reason. I'm not sure what needs to be ablated to get rid of PVC's or a fib so I would talk to your doctor about that. Of course there is risk for a pacemaker and other things during any ablation but I was told that as long as they don't mess with the sinus node, that risk is less than 5%. I hope this helps answer your question.

Thanks for the responses. I'm really hoping he can give me some answers. This is such a frustrating illness, as I'm sure you all know. Being in college and away from home makes it even more difficult so figuring out exactly what's going on and the best way to treat it will be extremely helpful.

I have been a patient at the Cleveland Clinic for a while now but I have not seen Dr. Jaeger before. I have an appointment with him in April and I'm just wondering what I can expect. What tests did he order for you? Was he helpful with finding the cause of your POTS and with figuring out a treatment plan that will work for you? Some background info that might be helpful: I'm a 21 year old female. I have Inappropriate Sinus Tachycardia and my EP thinks I may also have POTS so he referred me to Dr. Jaeger since he specializes in this. I have already had a blood volume and hemodynamics test (normal blood volume, minor to moderate blood pooling in legs), autonomic reflex test (normal), a QSART (normal), echocardiogram (normal), and countless EKGs (sinus arrhythmia but otherwise normal), and several holter and event monitors (showed average hr of about 100 bpm which diagnosed the IST). I have not had a tilt table test yet due to insurance not covering it. Also, I used to suffer from PSVT which got progressively worse until I was having 4-5 attacks a week and had to have an ablation done to get rid of the extra pathway. I had this done in December 2011 and so far it hasn't returned but my IST and POTS symptoms are still here. I have been on several different beta blockers. I'm currently taking propranolol. I also tried midodrine which did nothing for me and gave me terrible headaches and head pressure. I think that covers most of it.