My doc thinks I have an arrhythmia...I am being hooked up to a holtier on Friday too

[mngirl]

I want to start by saying too...I LOST my medical alert bracelet! I ordered a new one yesterday and I am hoping that it comes tomorrow - they said within 48 hours - I got it from medicalert.org, they have free shipping right now, which was great - I got a PINK one! The only thing is that it is smaller and I have recently learned that I have more allergies. I left it to them to medically decide what is the most important info to have on there. I figured that if it isn't what I wanted then I will order a larger one and request what I want on there. Sorry for the off topic start....but I am just SO mad that I lost it and didn't even recognize it. You would think that you would hear it hit the floor. I called the 2 places that I went to this past weekend and they haven't found anything. Watch...as soon as the new one comes I will find the old onne. So, on to the main topic here....

We had the POTS stuff under control until I went into the hospital for the 16 days. While there we increased my beta blocker, which should have LOWERED my pulse rate. Prior to going into the hospital my heart rate was in the in 50s - great...while in the hospital it started jumping around, therefore he increased the beta blocker. Ever since the hospital we cannot get it under control - it is like the Nadolol stopped working. So, we tried Norpace a week and a half ago without the Nadolol - bad choice, I couldn't stand...so back on the Nadolol. Then we tried the Nicoderm last week with bad reactions (see other posts)....so we are not trying the Nadolol WITH the Norpace. And it still is not making ANY difference. As I sit here (I am hooked up to one of those heart rate monitors people use while exerciseing)...the alarm is set to go off if it is below 45 and above 120....it is going off constantly and it is anywhere from 109-170!!!! Just sitting here typing! Today it was going off while driving with my boss to a meeting...that was in the 150s - and I was just sitting there doing nothing!

The other day at my infusion, on the beta blockers, sitting there my pulse was in the 80s - not normal. If I get up to walk around it gets into the 110s I was thinking that there was something wrong with the watch I am wearing, but each time I am hooked up to the monitor at my infusion it is RIGHT ON...and when the nirse takes my pulse manually, it is right on then too...so I have a hard time believing that all this is wrong. My dov told me yesterday that he thinks it is an arrhythmia that just started for some reason....due to all the drugs? Actually yesterday morning my heart rate was in the 90s and then dropped to 42! odd change from it jumping up. He told me that he also thinks that I am developing an autoimmune disease where if I go off a medication to try another and then that one doesn't work and I try to go back to the old one, it won't work anymore...that is the issue with the Nadolol he thinks. I asked him about taking away ALL my meds and starting over, but he is afraid that I won't ever be able to take them again because my body will reject them! We've increased the Methadone in hopes that would help a little...Seems that we are just constantly increasing the dosages. I am not up to taking 16 pills twice a day, not including the Lidocaine infusions twice a week or the trigger point injections!

I am afraid about this arrhythmia thing...isn't the only thing to do to fix it is a pacemaker? I just can't imagine. I am so dizzy all the time from all this too. I can't walk up a flight of stairs without passing out or feeling like I just ran a marathon.

I still can't eat and we are talking about this test for watching how my body processes the food stuff. And possibly having to have a pacemaker type thing just to be able to eat! Imagine that...a port...a pacemaker to control the arrhythmia and a pacemaker to eat! Along with the pins and rods I have in my back - I will be Robo Girl pretty soon! I am totally freaking out about all this.'''

Now watch the holtier monitor show NOTHING! And I know that something is happening because I can't walk without just about passing out and this DANG watch alarm keeps going off. I just wish that he was with me just once when the alarm goes off. There have been many times that while shopping I have had to stop and hold tightly onto the shelf because I feel like I am going to collapse to the floor. I am almost tempted to puchase another one to see if I get the same results. This is a good one to begin with....even though, I just want to see if it is me or what. The only other confirmation that I have had, is that when I get on to my treadmill and hold onto the pulse checker it too says that my pulse is really high. Even the when we were purchasing it, I was checking it and it was 145 - the salesman said that it must be wrong, so he turned off the machine and I did it again...145....so he started to tap on the screen thinking it was broke or something. I was funny becuase that day I could SO feel it becuase I couldn't walk straight and was running into things.

anyway...I guess I will have the results of my monitor on Monday...we'lll see what it says.

Oh....and here is a suggestion...I made the staff in the Internal Medicine dept at my clininc cookies for having to put up with the 10 calls I make to them every week and the 3-4 appts that I have with my doc per week. I told them that I was sorry to be such a pain in the butt and I just wanted to say thank you for getting me in to see my doc, when they are making others wait a lot longer to get into see him. They were all so GRATEFUL....everyone of them stopped by during my infusion to say thank you (even one that has been a little stuck up with me since all this has started, I won her over)....I have cards to the special 4 nurses that I deal with weekly (3 for my infusions and my doctors personal nurse) and then I gave a card and cookies to my doc. They all couldn't believe that I thought of them and took time while not feeling well to make them treats...they were all so touched. My one nurse even gave me a hug on my way out....Now that is the type of staff of nurses and docs that I hope you all have. I feel ever so grateful that I have the medical staff that I have access to. They are switchin all infusions over to the Oncology dept at the 1st of the year, so I will have to learn a bunch of new nurses. But it will be good. I will then know almost ALL the nurses on my floor of the clinic as I have had the Cardiology dept do my infusions too (Internal medicine does them now)...and now it will be Oncology...the only other dept on that floor is OB-GYN, which I have

attended a few times too, but don't know them so well. Anyway....treats win them over....think about it

So, wish me luck that something shows up on that thing otherwise he is going to think that I am a crackpot - although he sees it during my infusions, so he knows something is up.

Okay...that is enough for now, I could write a book tonight....thanks for reading....wish me luck...I truly need some....I know my doc knows something is wrong and he doesn't think that I am crazy at this point, but I don't want him to start thing that. Time for bed, if I can get to sleep.

We are having a snow storm tonight and are expecting to wake up to 6 inches of new snow! I HATE driving in this crap...I SO want to move out of MN!

NIGHT ALL! I'll update when I have some news!

~LIsa

[taylortotmom]

Hi, Lisa. I, too am a Robogirl. I have a port and will be getting a pacemaker next month. One thing I can tell you from experience is to try not to be consumed by your erratic heart rythms. (Easier said than done!) Many, many people have erratic heartrates that are harmless. Yes, some arrythmias do cause problems and some (Atrial Fib, e.g.) can cause major problems. But.... worrying about heart rythms (for me at least) usually makes the problem worse because I get stressed and my body reacts thus creating a vicious cycle. The holter should (but not always) pick up on your irreagular rythyms and your doctor will be able to tell what type of arrythmia(s) you have and where to go from here.

A pacemaker may or may not help you. I personally have tachy-brady syndrome (aka Sick Sinus Syndrome) and all other options have been exhausted for me so a pacemaker is the next step. But, there might be a differrent type of med that might work for you. Beta blockers worked for me for several years but no longer are a good option because of my already chronically low blood pressure. So... your situation may just need a differrent type of med (they are antiarrythmia drugs that aren't beta blockers) or a pacemaker might be a logical answer.

The pacemaker in the stomach issue is something I don't know much about but maybe someone else can help you. Don't let all these electronic "devices" scare you- it is because of these things that we might possibly have normal lives at some point. So, hang in there- try to relax, and get some answers. Good luck.

Carmen

[mom4cem]

Hi Mngirl,

Hope you woke up feeling better day. I am not a fan of snow..only if it disappears as quickly as it appears, but that never seems to happen. Hate to drive in it.

Funny thing, when I was trying to switch from atenelol to toprol, I started to have a high resting pulse rate, don't know if it was from weaning off the atenelol but the toprol did not do the trick. So I went back to the atenelol but now I still experience days when all of a sudden my resting rate stays up in the 90's or 100s. (forget about standing or walking when it is like that) Then I need to pop an extra blocker to bring it down, then there are a few days in a row when my rate will stay in the 70's sitting. Interesting about the autoimmune connection that your dr suggested with changing meds. Hmmmm....

I don't know much about pacemakers except for most that I have heard that have one, usually it is because they have bradycardia issues along with tachy or after ablations that left them needing a pacer. I really don't know much about them.

I don't know whether to say I hope the monitor shows something or not. I have an event one(after about 2 years of having a two electrode one that I wore) I just place this one on my chest when I am having an episode and I send the info over to the tech. So far, it has shown sinus tachy. So dr. is not worried but it certainly annoys me when it happens. At least your dr will be able to identify what type of rhythm is going on and hopefully select a treatment that can help.

[Guest Finrussak]

Beta blockers ALWAYS act the opposite in me!!!! ( a brief lowering heart rate then a zooming high heart rates, and then severe RAISING of BP--like my body tries to fight it) and cause massive chest pains too...and anti-arrythmics actually worsen my arrythmias...

as for monitoring If your Holter is inconclusive do not stop there. There is something called a LOOP MONITOR that is just 3 sticky electrodes worn ( changed daily) , and connects to a pager sized device worn on belt or in pocket...very unobtrusive and comfortable!!! Just if u have sensitive skin get hypoallergenic and/or pediatric electrodes!!! and slightly change area they stick on

anyway this constantly takes tracings and when you feel a sx, or anything weird, you press the record button, It will then back up and save 1-2 minute prior to your pressing the button plus 2-3 minutes after...depending upon brand...then you write down the time and what u were doing and CALL the company...they will immediately read results to see if you need emergency help and meanwhile copies of everything are faxed every day to your Drs. It took 3 (THREE!!!!!) months for mine this past spring to finally find something...(those pesky seconds when my heart stops dead)...I had used one about 4 yrs ago and it found a minor thing...not related to what Im dealing with but this past spring my current cardio took my urgings and ordered it...he had really never did one before relying only on Holters...well he now uses these almost exclusively. Its so easy too...a phone call from his office has all I need fedexed directly to my dorr!!! and with a prepaid envelope to go back too!!!!

You can have it anywhere from weeks to months and ur Dr can add time as well.. This way they have ample data to decide what you need...Plus its great if changing meds or dropping meds and you feel funny...u call in a tracing and the DR can tell immediately whats happening!!!!

Funny thing is often its a "watched pot" thing...my kids joke that I should get one on all the time as my heart seems calmer and less symptomatic so it takes longer to get a good reading...maybe Im just calmer so less aware knowing Im safer and collecting info so no guessing?!>

good luck

Finette

[mom4cem]

Hi Fin,

I had a loop recorder for 2 years,,that's right 2! It did acutally become a security thing for me. I caught lots of different things on it, from pvc, to pac to tachy and some other rhythms too. I really like the company that we dealt with. For 2 years after I was monitor free but since this spring I have a event monitor this time. My cardio does not feel I need the loop, he says he just wants to see the rhythm and since I experience the tachy for 10-45minutes it is plenty of time to catch it.

I have to agree on the electrodes, I could use the pediatric ones but they would fall off to easy so the regular electrodes I would have to take the spongy disc off of it, it seem that would make me itch like crazy and would leave my skin very irritated.

I would recommend that monitor too. Mine was called the king of hearts monitor.

Mngirl,

How did it go today?

[Guest Finrussak]

oops I was talking about different event recorders, some now confusingly called modified loops...the actual "loop recorders" i know about but havent had are from what my cardio says attached like an external pacemaker into the heart and a bit more risky...is this the case???

[Guest Julia59]

Finette,

I have a implantable cardiac loop recorder implanted under the skin near my left breast tissue. It's about the size of a small cigarette lighter. It's implanted under local anesthetic--and valume can be given to calm you during the procedure.

This takes continuous recordings---(EKGs) automatically. you can take up to three recording for anything significant that you feel---these can not be over-ridden---as some of the automatic ones can. So far not even the automatic ones haven't been erased. Then when you have some recordings you go and have it downloaded. They place something that looks like a computer mouse over the device---(and it can be done right over your clothes).

It records everything that went on up to that date. It also records a current recording---and then it's reset for the next batch. They have an RN---(Harry) at MUO----(that is where Dr. Grubb's office is) that does all the downloads. It takes about 2 minutes to download all the information. When I take my own recording I used a small square device and place it over the device in my chest--press the button---and when the green light gives me the OK I press the putton again. If the RED light goes off---then I don't have it placed over the device correctly. I carry it in my purse---it's about the size of a square cigarette lighter----but thinner.

This device can be worn up to 18 months. It's made by Medtronic----they also make pace makers.

I don't have a lot of arrhythmias----but I have had some really odd ones that seem like my heart is coming to a stop and then flipping around in my chest. They aren't very frequent----but they are very scarey. Dr. Grubb thought a long term implantable recording device would work out well. So far it just shows that my heart rate is always pretty high---low to mid 90s most of the time---even in my sleep. This is on my beta-blockers----and there were bouts of tachycardia--- he didn't tell me how high---and I don't want to know.

I have a new drug to add to the mix----clonidine---to work with my beta-blocker.

Julie :0)