Anoj Posted March 12, 2012 Report Share Posted March 12, 2012 Hello,I am relatively new here. My summary is that I was dx with dysautonomia in the summer of 2010. Hospitalized Nov. 2010 when I crashed. I am taking Midodrine, Florinef and Zoloft. I had made a lot of improvement within the past year; however, I keep having setbacks and ending up bedridden/houseridden again, for months at a time.My cardiologist is actually pretty good. He recently sent me to an electrophysiologist who recommended I take a beta blocker. I don't know what kind of dysautonomia or POTS I have. Not even sure I technically have POTS, although I do occasionally get tachy and have heart palpitations constantly.I had taken a beta blocker before the hospitalization/crash and experienced shortness of breath, so I discontinued at that time. One thing I did notice was that it cut out the palpitations.Now, I would really like to try this again. But, unfortunately I took only a quarter of a dose 2 days ago and was so tired I couldn't find the energy to even move about the house. My question is - does the crippling fatigue from beta blockers go away? Does your body eventually get used to it? It seemed to make my condition worse. I was definitely dizzier and weaker. It felt like I had less blood flow to my brain. On the upside, I had minimal heart palps and didn't feel like I was going to "lose it" with small movements/motion. (I often can't handle the vibrations of the parking garage at work, or walk too fast without feeling faint - I am assuming this is a classic POTS symptom?) So, is it worth trying to continue, even though it's making me feel worse, in the hopes of some payoff eventually? Since my crash, I have been much more sensitive to medication!Another question - he put me on Kerlone (Betaxolol). I haven't seen that a lot in relation to this illness, so I was wondering if there is a preferred beta blocker that people take? I looked this one up, and it seems that the effect is more narrow (heart/kidneys only) as opposed to whole body. What do you guys think about this drug?Also, I'm wondering if upping my Midodrine dosage would maybe counteract the fatigue from the beta blocker?I also have concerns about the beta blocker becs I am hypothyroid and take Synthroid. I would probably need to adjust my Synthroid dosage, which I am not looking forward to because I am VERY sensitive to medications that have any stimulant effect whatsoever (makes me dizzier/tired, not hyper).If I start messing around with my medications/dosages again, I will probably have to take FMLA again from my job. Long story for another thread, but I've been clinging to my job by my fingernails for the past year.Thank you in advance for listening and/or responding. Quote Link to comment Share on other sites More sharing options...
Sif Posted March 12, 2012 Report Share Posted March 12, 2012 Hi Anoj, I haven't had dysautonomia for as long as you but I'm on similar meds so I thought I'd comment based on my experience. A quarter is too much for me these days.. my doctor has even laughed at the tiny amounts of beta blocker I take, hehe. Maybe your blood pressure got too low after taking it and an even smaller dose might work better for you?A beta blocker (metoprolol) was the very first drug I was given for my POTS as my tachycardia on standing was very excessive. I experienced a lot of fatigue during my first few days on it but thankfully it cleared up as the beta blocker helped me get back up on my feet for short periods of time. After a couple of months my tachy started to slightly lessen and I cut my dose back to a quarter as I feel very lethargic when my resting HR gets too low (<70 bpm - weird body!) and I'm really sensitive to meds also! My HR continues to settle and I find myself needing an even smaller amount although I'm not quite at the point where I can do without it yet. My cardiologist is pretty happy for me to play around with my dose as needed as some days are much worse than others although I doubt he'd allow this if I wasn't on such a tiny dose. I take a different beta blocker to you so I can't comment on the type you're taking though, sorry!I started Midodrine after starting a beta blocker and haven't noticed a difference in my fatigue levels. I also take thyroxine for hypothyroidism and haven't needed to have a dose adjustment since starting on beta blockers. My endo is pretty cautious with my dosage because of my hypersensitivity to meds so maybe that's why, lol.Good luck and I hope you can find some answers. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 12, 2012 Report Share Posted March 12, 2012 Some beta blockers have less affect on the BP, so they'd cause less hypotension which can cause worse fatigue. I could be wrong, but it seems that the propranolol that many folks on DINET take seems to have less hypotensive side effects while still managing the tachycardia. How is your BP when you feel so fatigued? It may be a good idea to check it while standing, to get a true idea of how that beta blocker affects your vitals. Quote Link to comment Share on other sites More sharing options...
Anoj Posted March 12, 2012 Author Report Share Posted March 12, 2012 thank you both for responding. so, maybe less than a quarter of a dose? wow. my BP was average/normal while taking it. 117/69. i think my symptoms are more NCS than POTS, so i'm not sure this is even going to work. i think most of my body systems are depressed. the theory behind getting on this was that apparently the body's adrenal system is what causes the BP to be so low ... so hopefully counteracting the initial adrenal response would cause the body not to push the BP so low? does that make sense? yet, i don't regularly get true tachy. i just have heart palps all the time. and, i'm not sure what's up with that shaky/fainty feeling i get from movement or stimulation. i once fainted during the previews in a movie theater, from the sound alone. my docs don't understand it.i got my hopes up for trying something new, but i'm afraid this might not work. i guess i wanted to know how long to keep trying.i really wish i could afford to quit working to allow myself the time/freedom i need to take care of myself. it's hard to hold down a job and deal with all of this. yet, i suppose i'm just lucky i have income. i took FMLA and went to physical therapy last year, and it worked wonders! but at this point my job is fed up with me, so i'm afraid to take off again. when i tried explaining this to my doc, i think he thought i was offering excuses, but right now i feel like i'm living to work and have no energy for anything else (fun, exercise, etc.) Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted March 12, 2012 Report Share Posted March 12, 2012 Hi,I am on Metoprolol as well, and it is the only BB that has worked for me. I was so fatigued before they put me on it I didn't notice if it made it worse. I have not heard of the drug you are on, sorry.Good luck,Angela Quote Link to comment Share on other sites More sharing options...
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