dizzygirl Posted June 23, 2006 Report Share Posted June 23, 2006 Hi folks..As most fo you know i have some pretty gosh darn high tachycardia rates... and b/c of that i'm on 2 beta blockers.. well my dilema being 1. roughly 1-1/2 our after taking my morning dose of meds (bexatolol I'm on the highest max dose aloud).. that I get really really tired.. and will sleep anywhere from 2-6 hours straight after taking it.. and I'm just useless after wards.. and very very low functioning..(aside from potsy stuff)the same thing happens at night.. (which would not be bad) but my clonidine dose is higher at night the n during the day.. b/c i get bad adrenaline surges like clock work between 2-6 am.. and before starting clonidine i was getting them just about everynight.. now i only get them mayb once or twice a week..2. I'm wondering if I should stop the beta blockers b/c they make me so sleepy and out of it.. but they keep my HR at bay running anywhere between 55-150... which is good for me b/c i get up really high..though a few times it has gottne up to over 200 on this dose of bb's...but not as often as with out them..i've tried taking half the dose or a quarter of the dose of meds.. (when i started on the medication.. i started there and worked my way up)and it just sint effective unless I take the full dose both at night and during the day...If I'm not on a bb (or any bb)at all then my HR will be up over 190-200 constantly. and i will feel much wore potsy wise then i do nowI'm debating what to I feel like its a catch 22 either way I go.. stay on the beta blocker.. have my hr stay under 150.. but be so whipped out all the time and sleep my days away.. or go off the bb's and be totally non functional b/c i cant deal with my HR..either way i feel I'd be well scr*wed..I'm not trying to be a pain in the rear as this combo of b's has worked the best overall in comparion to any other bb's i've been on.. and i've been on alot of them... I guess i'm wondering what you guys would do if you where in my shoessleep you days away... and at night pass out while oyou are laying down.. but have less of them terribly surges.. or go off the meds.. surg all the time... woudlnt be so tired.. but would be more potsyi feel sick regardless of weather i take them or dont take them.. Quote Link to comment Share on other sites More sharing options...
Guest sonotech Posted June 23, 2006 Report Share Posted June 23, 2006 Gosh.....I don't think anyone SHOULD or WOULD tell you to alter your meds, especially a BB. You just don't want to mess with stuff like that because it is kinda serious.You should probably hang in there, or give your doc a call and discuss your concerns!!Like you said.....it is a "catch 22". Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted June 23, 2006 Report Share Posted June 23, 2006 Linda, It sounds like if you were to go off your BB's, your heartrate would be dangerously high...having a heartrate of over 160 bpm for more than 24 hours can lead to cardiomyopathy...we're just not designed to sustain such high heartrates. I'd talk to your doc and see if there's anything that can be done. I'm so sorry you're in this pickle. Have you given any more thought to getting a cat? (kind of random question but maybe a fuzzy friend would make you feel a bit better )(((HUGS)))Lauren PS. PM me your address again. I have something that may cheer you up. Quote Link to comment Share on other sites More sharing options...
yikespanic Posted June 23, 2006 Report Share Posted June 23, 2006 I wouldn't do anything without the direction of your doctor. I do know I had some problems with beta blockers. My first was atenenol (spelling?) It made me very tired and worse than that a depression feeling came on slowly and steadily to the point I felt so down and depressed, really came on so slowly I didn't realize what was happening. So after complaining my doc at the time switch me to lopressor which worked better and had less tired effect and the depressed feeling began to lift somewhat. Maybe ask if some other combination of beta blockers might be tried and see if there is a difference. Doc Grubb took me off my beta blockers and my heart rate has calmed down after starting celexa. Everyone is different so make sure you seek the direction of your doctor, you don't want to harm yourself by self changing your meds. I hope your are feeling better, take care.Kim Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted June 23, 2006 Report Share Posted June 23, 2006 Hmmm Linda, that's a tough call. I would try and talk to one of your doctors about it...I'm not really sure what I would do. Atleast if you are sleeping you won't have to go to ER, where if you have alot more surges you may have to..Goodluck what ever it is you decide to do. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted June 23, 2006 Author Report Share Posted June 23, 2006 I wanted to clarify that i'm not tweeking my meds.. I'm on the same dose have been for a number of months.. and i've been on clonidine the pill form since september i think.. and betaxolol since november.. and i started off slowly quarter of a pill and worked my way upto the max doseage.. and since i started it it makes me feel yucky.. but help the heart rate issues to a certain degree...so i've been on these meds roughly 9-10 months.. and they jsut wipe me out completely.. I'm guessing it b/c by the time i'm ready for my next dose that my heart rate and bp are speeding up again.. and the neds slow them down.. but i'm not making any changes.. that is for sure until i see my potsy doc in afew weeks.. this is like the first somewaht successful bb that we have found that works even a little bit.. i kind of dont want to go in there and say.."sorry but these help but make me feel like "dopey the sleepiest most lethargic elf around"i really have been put on at the very least over 10-12 different bb's.. and treid and ALOT fo different doseages as well.lauren. LOL.. I still want a littl furr ball (kitten).. but I'm going to wait a bit before i get one.. I'm hoping by the end of summer to get one.. my parent live near an animal rescue shelter.. and i thought i scoop up a pet from there..dont worry i'll be sure to let everybody know when i get a pet.. my grandma also thinks its about time for me to get a pet.. the last one i had was my kitty snuggles.. i had her befoer i got sick.. and once i got sick.. i ended up having to put her up for adoption b/c i lost everything and couldnt afford to fed her or properly take care of her.. she was the sweetest kitty!!.. she'd lay withm e all day in bed.. and once i'd get up she'd walk at my feet mewoing at me.. then sit on the edge of the tub if i was in the shower poking her head around the shower curtain with an occasional meow.. she was too sweet. broke my heart to have to give her up!! I'll PM oyou dear..i do not handle ssri's at all. and i wont go back on one any time soon.. so bb's.. i have to find one that works well and doesnt leave me feeling like a lush or lethargic feeling. ugh! Quote Link to comment Share on other sites More sharing options...
yogini Posted June 23, 2006 Report Share Posted June 23, 2006 I agree with Lauren. I think with the heart rates you're talking about, it seems like a BB would be pretty important. How long have you been taking the BBs? Because my fatigue and other side effects got a lot better after a year or so of being on them. My only other suggestions are: can you take a bigger dose at night or try another BB which might make you less tired? Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted June 23, 2006 Report Share Posted June 23, 2006 i just wish you luck. but definately take it to your doctor. he may help you adjust your meds or something so it isn't so "catch-22".dionna Quote Link to comment Share on other sites More sharing options...
mom4cem Posted June 23, 2006 Report Share Posted June 23, 2006 I wish I could offer you some helpful ideas. There is that nasty rebound effect when you don't take or miss a dose. I know that feeling. I can't take to many meds either, I have tried and have had some yucky side effects. I don't remember exactly what your docs have said but they have concluded those very high heart rates to pots? Even sitting are they that high?I know when I get surges my hr goes up and sometimes so does my b/p. It can be a short time or a long episode. Otherwise I tend to have fluctuation hr and b/p on a beta blocker. I take 25mg which I break up.I've tried to reduce the meds, wait longer to take the next dose hoping that maybe I can do without them, but all I need is a little twinge of my heart racing or a surge then I hurry and pop the pill.I hope when you go back to your dr. he/she can offer you some suggestions.Feel better. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted June 23, 2006 Author Report Share Posted June 23, 2006 hi..no they have no figured out why my hr goes over 200.. i was told that its unrelated to pots.. b/c pots "isnt suppose" to cause your rate to go that high.. but they dont know what exactly is causing it to shoot that high...and yes i get it sitting laying or standing.. if i sit or stand they go higher.. on many many occasions I've had a resting hr of 204-220.. while laying down... and not moving..then upon standing ti will go up over 240..But i plan on talking to dr.g about my meds.. i kind of feel bad.. b/c he gets some what of a sad look on his face.. when i say i cant tolerate a med.. we have tried just about everything...I'm allready on the max dose of one bb.. cant go any higher.. and at a lower dose it doesnt work at all..i dont know.. we'll see.. I'll let you know what i find out..thanks dizz Quote Link to comment Share on other sites More sharing options...
nadine Posted June 23, 2006 Report Share Posted June 23, 2006 I hope that you can find a plan that works better for you, so you won't be so fatigued. I find that the atenolol does make me fatigued, which is why when I was working, I took it later in the day. I just have to say for all of you that have such high heart rates, I don't know how you get through it. My HR is usually very low, around 50's, so whenever it gets aound 100-120, I feel like I am going to just die-but obviously still here. It is very scary, but I manage to get through it. I just can't imagine something around 150-200!!!! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 23, 2006 Report Share Posted June 23, 2006 Have you tried Mestinon? How about Midodrine? Just a thought or two to share with you and your doctor! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted June 23, 2006 Author Report Share Posted June 23, 2006 yes i've been on mestinon and midrodrine..i was on mestinon both regualr and time released form.. for about 1 yr.. we tried SOOOOOOOOO many different doseages and times of day to take it.. I was on HIGH doseages of mestinon. and it lost its effectiveness.. and i couldnt handle the side-effect no longer..(GI wise)midrodrine.. I dont do well on it.. have tried it 2 different times.. again at diff. doses.. and the 2nd time on it I had a horrible time on it.. and now its in my list of med allergies...i really have been on a ton of meds.."we" (docs) are starting to hit road blocks on treatment options available for other health problems.. b/c of problems with pots.. i just came from an endo apointment.. where the NP was like we have never run into this ... w/ one person having so many drug allergies and med intolerance.. and we've never treated a patient with pots..i dont know maybe i should just suck it up and grin and bare it.. as sad as this sounds.. these 2 bb's together have worked the best.. i had a 24 hour monitor a while back.. then a continuos one for several weeks and i got my HR at 170 and higher on my BB's...i dont know i feel bad asking my doc to come up with an other med again to use!.. but i'm so exhausted its unreal... Quote Link to comment Share on other sites More sharing options...
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