I just returned from my latest visit with the EP and I'm left feeling very lost. He has been adjusting my Toptol XL over the last few months to get my heartrate down, which it has if I don't do anything, but it has left me very tired and with a bad twitch. When I told him this his reply was that the hr is only 85 right now(while sitting) and my heart needs the break so he is keeping the dose where it is. Then he said to increase activity as long as it isn't hot or humid out(it's summer) and there was nothing else he could do so follow up w/ my regular cardiologist. I feel like he just left me hanging, I know there isn't much I can do but deal with the symptoms as they come but I thought he would oversee things as long as the HR was an issue. Am I missing something?

Welcome to my world g'friend!!!
I've been dumped by the best of them! <chuckes>

But I DO know how you feel.
I tell myself they don't think it's serious or they wouldn't do this--but I still fight telling myself it's because they have no clue what to do and don't care enough to look for more ideas.

But that's negative energy--so I DO fight it.

Find a doctor who DOES care and who WILL look is all I can suggest.

If you find a cure please post it here--'cause far as I know no one has found one--yet--but we're all still looking!

It may take awhile~~~~

I'm sorry it didn't work out as you'd hoped--seriously--very sorry.
If it matters I care. And most the folks here do too!!!

Hi,

I'd do a bit of research to look for another doc in the same field. Leaving us confused is not on. We have an on-going illness and should not be dumped without some provision for follow-up.

I've experienced it myself. Although no doc has come out and said, "I can't help you." I get that shrug and look and know there is no point in going back to see those docs. They don't want to know as it's too hard.

Thank god for the good docs. Just got to find them.

It can be very upsetting to be left hanging and I feel for you. It happened to me over a month ago and I was really distressed about it. Not for long though. I've developed thick skin when it comes to many docs.

i, too, am sorry to hear about your visit. totally understand!
speaking of doctors "dumping" us, my cardio never flat out said he could not longer help me, but like blueskies said, i just knew it was the end. you did the, "well i don't think autonomic dysfunction is really related to my field, i think you should go back to dr. X." well i have been reviewing all of his medical notes on me, and found an email that he wrote to my internist, which thanked him for this most interesting case. he said that my case is a challenge, and he is very excited to learn more about these issues.
what?! news to me! at what point did he decide it was no longer interesting and just too hard?

Thanks for the replies, I think what got to me was that he has been very helpful. I have copies of follow-up letters he sent my GP and Cardiologist and he like your Dr, Gracie Tiger thank them for refering " such an interesting case". I also have all the lab and test results and his office notes where he list POTS and IST so I know he at least knows what I'm dealing with. All I can come up with is that he had tunnel vision on HR and that is his only concern, which would be find if 1- it was under control and 2- that helped with the other symptoms. Oh well live and learn and next week just for fun I can deal with the GI doctor.

Wendy~

My personal favorite leaving me hanging sort of things doctors have said to me include:

you are an enigma wrapped in a riddle my dear

this might just be as good as it gets

I just don't have any ideas about how to help you

and the best ever...

To be perfectly honest I am afraid that I would just make you worse and don't want to take that risk.

I go back to the EP Wednesday and am not looking forward to...this guy just wants to try lots of things that didn't work before (sometimes several times) and messing up other problems I have by changing the meds that do work. Aaarrgggh.

I feel your pain my friends...

Hi Gracie,

When I first went to see my current general practioner last October my specialists were insistant that I get a good GP to help manage my symptoms so that I would not always be guessing at what was happening to me and having to make costly appointments to see my specialists when a GP with some knowledge and their assistance could manage my symptoms without as many visits to them, I asked him outright would he be interested in having me as a patient and learning about POTS.

He was ENTHUSIASTIC. For about one visit. After that it's just been downhill. Last time I had an allergic reactiont to something he didn't even bother to look at the rash. He just said it was probably that the urticaria I had experienced a month or so earlier had not settled down as we'd thought and flared again. Only problem was the rash did not look like the urticaria rash. I should know, I was the one wearing it.

Time to find a new general doc but it's an exhausting process.

Ms. Amy ~

Sounds like we have aeen some of the same doctors. I been told:

Your a puzzle and I'm sorry but I don't have the pieces to help you.

Maybe you should see a(fill in with any number of different specialist) maybe they can shed some light on what is going on.

I'm very frustrated with your case

Maybe time will help, just keep doing what you are.

I'm sorry your a zebra ( I left that doctor wondering if I should see a Vet)

Things are hard enough somedays, It would be nice to be able to count on your Doctor to at least be understanding.

Wendy~

Wendy,
Most of the highly specialized "ologists" will refer you back to your primary care giver, as they are the specialist in that area, and once they think they have stabilized you or can do nothing, they refer you back to your primary "ologist" or PCP.
Toprol XR is the latest and greatest beta-blocker for hypertension that has hit the market. It has a tiny percentage of being used to lower heart rate. I'm just kinda wondering why this doc chose this med as opposed to meds specifically targeted to address tachycardia [anti-arrhythmics]? AS an EP, did he actually find the source of the rapid heart rate on tests? Or is he just doing the "you're an enigma and let's guess our best."
I went and looked at a couple sites on the side-effects of Toprol. CNS seizures have been reported with toxicity. It does concern me that you have "twitches". I would encourage you to do a quick search on the med and its side-effects as a lot of doctors are aware of the common ones, but not so in tune with the uncommon one; which I find more common amongst our population. My cardiologist called me up and wanted me to try Toprol when it came out. One dose was enough to go, "hell no." I take a beta blocker [atenolol] only with my bkfst and dinner doses of midodrine to stop the adverse side-effect I got to that drug; angina. I wasn't having hypertension or rapid heart beat issues to say the least. So, I told him I'm staying on what works.
I don't like "twitches" in my patients from a med; it has usually led to finding an overdose or toxicity issue. My daughter called me one night and had what she described as "twitches", but when I got to her house, I found she was having a unique CNS condition known as extra-pyramidal side effects. She had overdosed on a medication by accident. I looked online, found the toxicity/overdose symptom, and then found the antagonist (med to stop the reaction). Thankfully, I had some on hand.
My cardiologist is precious and has been first my colleague then my doc, and he was willing to walk it through with me until...with a gentle, loving respect along the way. We did have an "agree to disagree" on my need for a pacer until I got on here and got the evidence to him that it works for those of us with severe bradycardia. He also calls me his "enigma" (puzzle), but remains my rock.
If I were you, I would definitely ask your cardiologist and maybe your favorite pharmacist about these "twitches". I don't know what they have tried or not, but being informed about the med will help you look at it in its full light. Knowledge is power. My list of "can't take it" through trial and error is at least a third of no line spacing on a piece of paper. Personally, I have had a lot of the "uncommon" weird side effects - esp. extra pyramidal ones, St. Vitus dance, or extremely painful paresthesias.
Just keep plowing away until you find a better fit, imho. C.

Gosh, I've been dumped by so many docs I can barely count em. I even had one lie to me about my abnormal test results because he didn't want to deal with me so I was told that I was just fine and all I had to do was drink more water.

Well thats funny, when I ordered the test results a year later it said PERIPHERAL ADRENGERIC DYSFUNCTION on the bottom of the test results in big giant letters. What a jerk. He just didn't want to admit that he was wrong and that I do have a neurological disorder.

Thing started out all enthusiastic with my current internist. Then somewhere along the line she decided I was just a nut and refused to see past that. When I told her about my diagnosis and treatment plan that I got from the Cleveland clinic she hardly said anything and just ran out the door as fast as she could. Well I felt dumped as dumped can be. What is the point of having a PCP if they don't do anything but run out the door as fast as they can? Shouldn't she at least have inquired if and when I was following up with a neurologist?

This is why I have seen so many doctors. They act enthusiastic for one day and then as soon as one test result comes back normal then you get dumped. The part that ticks me off as that they try to convince you that you are just fine and some of them even go so far as to congratulate you on your good health. Then I'm like Hello! I'm still suffering here! Then you get criticized for seeing so many doctors! Well maybe if they weren't a bunch of quitters then I wouldn't have to. I don't LIKE seeing a different doctor all the time, but they leave me no choice.

C.A. Beck~

I don't belive the EP knows why the high HR( if your questioning if it is an electrical issue), after the TTT he said he agreed w/ local doc that it was POTS and started adjusting meds ( I had been on two others to try to keep HR & BP stable under my endo's guidance, she is looking for a pheo. She had tried several meds and combos and we never got things under control just better than they were). Early on he mentioned (and it is in his notes) that he might have to change meds but never did. After that he raised the dose a couple times. I wasn't feeling well so he did a 48 hr holter and said the HR range was 52-158 and said it was also IST and wanted the dose higher to get the HR down. He said if we didn't get it under control the only thing left would be ablation but I'd end up with a pacer. I think that is also what is so troubling, he all of a sudden was like well it is under control...bye. I guess we have different ideas on what is under control. I said again that the dose seemed high , I was very tired and I am twitching but he said it was working so he wanted to keep it like it was. I see my GP next week and I'll run things past him. He has been overseeing things and is in contact with all the specialist. I knew the being tired was a side effect and as long as it was in an exceptable range I was ok with it but now I'm like a zombie. The twitching is disturbing, my husband says I look like I have Parkinsons when it starts in. I've also started losing control of my hands and am forever dropping things...this really stinks.

Ms. Dino - Your Dr. said that if he did an ablation you'd end up with a pacer? I'm curious about that. I also have IST and POTS. My EP did attempt to isolate the circuits causing the IST but there were too many and obviously he couldn't burn them all. Also, because POTS is caused by bad brain signals and IST by bad electrical signals, it's really hard to isolate the right circuits (this is my understanding anyway). But, he hasn't given up completely on trying to at least identify the IST problem in my electrical system and ablate that. If he can't, he won't ablate anything. I was just curious why your Dr. said you would need a pacer if he ablates. Is it because he would have to ablate so many circuits possibly? I know many on this forum who have had 40 or 50 ablations done. My Dr. will not do that......too much damage he thinks.
When my heartrate gets high (over the 150 range) I will start shaking sometimes twitching as well. It's easy for them to say we're under control - they aren't experiencing feeling like they're in a marathon all day long. Hang in there...

Trebleclef~

I didn't get into the whole ablation/pacer discussion with him because at the time he seemed to think that meds would help and that I was to young(I'm 46) to get a pacer. He was very clear that a pacer would be needed if we tried ablation. Sorry that isn't much help.

Wendy~

My docs are fearful of ablation because of the pacer issue as well -- I'm 31. Pacers have to be replaced and that means an ongoing need for surgery -- "and what quality of life is that" while I'm thinking what quality of life is this. Linda I think has a pacer perhaps you can pm her if you have specific questions.

I know of several people who have had successful ablations for IST without having to have a pacemaker put in. I think the issue comes when there are so many circuits affected and so many have to be burned that there is no choice but to put in a pacemaker. When my Dr. attempted my ablation and saw that almost every circuit was affected, he opted not to ablate anything. He also wanted to hold off due to my age (I was 36 at the time) and he also knew that is probably wouldn't solve my POTS issues anyway (he was attempting the ablation for IST and afib). It's a complicated issue - I think some Drs. are quick to put in pacemakers based on cardiac problems before POTS is even diagnosed. Definitely not something to jump into but if it could help even some of my problems, I'd be willing to consider it.....