jjpots Posted January 17, 2009 Report Share Posted January 17, 2009 The Mayo neurologists just added propanolol to my mestinon rx. It seems like it works for part of the day but then the tachy comes back. I'm only on 10 mg now. Anyone else on this, what dose are you taking and does your body just get used to it after a while and then stop working?Thanks for any info.JJH Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 17, 2009 Report Share Posted January 17, 2009 I only take this as needed...never daily.I like it because it justs last about 6 hours...NOT 24.bb can cause/worsen insomnia. And this low dose upsets my stomach if no food in it...thus I only take as needed...sometimes a pill daily..other times not for weeks.It does help with adrenalin surges...but I need my appetite so don't like to take this.GOOD LUCK with your dose. Quote Link to comment Share on other sites More sharing options...
jjpots Posted January 17, 2009 Author Report Share Posted January 17, 2009 Thanks for your input. I haven't had any problems with my stomach with this one but the mestinon was a killer to begin with. After a year on that one I think I'm finally used to it.Good luck to you too!JJH Quote Link to comment Share on other sites More sharing options...
cvincent Posted January 17, 2009 Report Share Posted January 17, 2009 Hi. I was on Propanolol for about 6 months. It never seemed to work so we had to keep increasing my dose. In the end it never really did anything for me and my tachycardia got bad. I am now on Bisoprolol which works a lot better. Hope the propanolol works for you.Candace Quote Link to comment Share on other sites More sharing options...
dawn Posted January 17, 2009 Report Share Posted January 17, 2009 I am on propranolol 10 mg 4 times daily. I have been on it for 15 years.I first tried 20mg but it caused fainting. I then tried toprol XL, also caused fainting.I take it every 5-7 hours. If I'm tachy will take after 4 hours or so.It is a betablocker that crosses into the brain so it helps with adrenaline surges.It interferes with sleep and also takes away your sex drive.I tolerate it well and could not function without it.I take my first dose an hour before getting out of the bed in the morning. I still have tachycardia whenI first get up, around 120. After I get a quart of liquids in me, I am better.Hope it works for you.Dawn Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 17, 2009 Report Share Posted January 17, 2009 Hi,I am on 10 mg every 4 hours with no side effect. Decreases HR and adrenaline surges. Quote Link to comment Share on other sites More sharing options...
Radha Posted January 17, 2009 Report Share Posted January 17, 2009 i take propranolol 40mg twice a day with atenolol too, it isnt strong enough alone for me but it does help the tachycardia and adrenaline surges, nothing eliminates it entirely, i couldnt manage without it, Radha Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 17, 2009 Report Share Posted January 17, 2009 I take propranolol (20mg) in the morning. I would vibrate/shake all day without it. I've been on it for almost a year now with no side effects. My allergist has me skip my dose before my allergy shots since it would interfere with an epi injection if I have an anaphylactic reaction to the shots. My PCP had me stop the night time dose because of supine bradycardia (I have this even without the beta-blocker.) My sleep doctor told me that beta-blockers destroy all the natural melatonin in your body, so you need to supplement with melatonin (small dose! like 1.5mg) if you want to sleep.I could not work without it. Quote Link to comment Share on other sites More sharing options...
valliali Posted January 17, 2009 Report Share Posted January 17, 2009 i also take propranolol. i take 10mg, two or three times a day. it is by far the best medication i have used. i transferred over to it from toprol. it has helped me wayyy better because it crosses the blood-brain barrier. Quote Link to comment Share on other sites More sharing options...
jjpots Posted January 17, 2009 Author Report Share Posted January 17, 2009 I started taking it an hour before I get out of bed too and seems like that helps for the morning. I put a call into the neurologist that I saw at the Mayo because she wanted to know how I was after two weeks. I had to just leave a msg. but I asked if I could take another 10mg around noon since it seems like it's getting fast around lunch again. Does your body get used to the med and then stop working? It sounds like some of you have been able to stay on it for quite a while. The doc also said the med might cause nightmares. Have any of you had experience with this? I've had some weird dreams since on it but not nightmares.Jen Quote Link to comment Share on other sites More sharing options...
HoldOnToHope Posted January 18, 2009 Report Share Posted January 18, 2009 I'd never heard that beta blockers can mess up your sleep..... good tip on taking melatonin. Anybody else ever been told this? My daughter takes metoprolol. Seems to help the tachy. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 18, 2009 Report Share Posted January 18, 2009 The Mayo neurologists just added propanolol to my mestinon rx. It seems like it works for part of the day but then the tachy comes back. I'm only on 10 mg now. Anyone else on this, what dose are you taking and does your body just get used to it after a while and then stop working?Thanks for any info.JJHPropranolol has a fairly short half-life (meaning it stops working within 12 hours.) 10 mg is not much, I take 20mg but only in the morning since I go bradycardic when I lie down. I usually take mine about 7 am, and it quits completely by 8 pm. Fortunately evening is the best time for me (when I am least symptomatic) so it works out OK. I do find that I get rebound tachycardia on the next day if I don't take it. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 18, 2009 Report Share Posted January 18, 2009 Yeah probably the most helpful medication for me. I used to take it as needed for the first few years I had POTS (as needed meaning when I had adrenaline surges or before a migraine) and it worked quite well for that.Since I had a bad relapse in October I was on a dosage that started at 10mg once a day and eventually went up to 40Mg a day before my current morning dosage of 10Mg at the moment.Several things Id say about Propanolol/Inderal is that it makes me photosensative (i live in australia and 20 minutes out in the sun used to do very little to me, but now I get burnt to a crisp!), it can increase the likelyhood of a faint through lowering BP and it ruins your sleep if you take it before bed. I take mine in the morning and try to resist taking it at night.My doc and I believe a lot of Docs are nowdays of the opinion that the BB is really just treating the symptoms of overactivity of the sympathetic nervous system - and in many patie4nts its overactive for a reason (trying to maintain blood flow to the brain). Quote Link to comment Share on other sites More sharing options...
jjpots Posted January 20, 2009 Author Report Share Posted January 20, 2009 I got the o.k. to add another 10 mg pill after lunch and I can even add another without checking in with them. After the 30 mg a day I think I have to check in again so hopefully I don't need to go past that.Jen Quote Link to comment Share on other sites More sharing options...
Pokey Posted February 27, 2009 Report Share Posted February 27, 2009 I got the o.k. to add another 10 mg pill after lunch and I can even add another without checking in with them. After the 30 mg a day I think I have to check in again so hopefully I don't need to go past that.JenHi all. I'm new to the board, and plan to give a fuller introduction this weekend.But I have a burning question. I have adrenergic POTS, with some orthostatic tolerance (I get the BP drop, but because my BP tends to run a little high, the drop is only to 95/85, unlike some of you, who really plummet to dangerous levels). I have been taking .1 mg Florinef, along with a healthy dose of Coreg. I recently added Mestinon, and tried dropping the Coreg (an alpha-beta blocker). Not good -- major tachy returned. So, I am back on the Coreg. And I've noticed that I am having much greater difficulty sleeping. Until reading this thread, I was unaware that beta blockers could interrupt sleep. Does anyone know if this applies to Coreg too? Sleep disturbance is one of my most significant issues, as it really thwarts my cognition and increases my chronic body pain.Thank you in advance for any help. I hope this is not considered off point -- if so, I can post a new thread.Pokey Quote Link to comment Share on other sites More sharing options...
Lizzegrl Posted February 27, 2009 Report Share Posted February 27, 2009 I took inderal for many years. It actually worked pretty well in conjuction with teds hose and some behavior mods. My side effects were pretty standard - no sleeping and sun sensitivity were the major issues. Except for the respiratory issues. Like most beta blockers, it does have a respiratory impact and with me, it probably did some damage after a decade of taking it. Since I had long had asthma and allergies my respiratory system was already compromised, but it is something to consider. It isn't something I regret at all, because it was really the only treatment available to me and it allowed me to finish high school and college and live a half way normal life for a long while. I just happened to be one of the more unlucky ones that it caught up with. Now, they are much more careful about use of beta blockers with asthma patients, but if your doc has weighed the risks, and thinks it is worth it, go for it!! It worked better for me than anything else has since then. Quote Link to comment Share on other sites More sharing options...
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