tag:blogger.com,1999:blog-22576999.post690580256612050738..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: Switching to Long-Acting Beta BlockersSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-22576999.post-50131509131471225282020-11-24T15:43:51.029-05:002020-11-24T15:43:51.029-05:00Hi, Glenda -
10 mg is a very low dose (which is ...Hi, Glenda - <br /><br />10 mg is a very low dose (which is good, that's how you want to start), but it is also the short-acting type of propranolol. As I explain in this post, most of us do better with long-acting beta blockers taken at bedtime (they last 24 hours), rather then the short-acting ones that you just started, which wear off after about 4 hours.<br /><br />So, my question is whether you are getting these side effects immediately after taking a dose? Or a few hours later, as it is wearing off? Those are common symptoms of OI itself, so the beta blocker should reduce them, not cause them.<br /><br />If you are getting those side effects within an hour of taking it, then you should try a different beta blocker. There are almost 40 different ones available, and propranolol is just one, so there are lots of options to try. Everyone reacts differently, and it often takes some trial and error to find the right one. Ask you doctor to try nadolol (it's a long-acting one, so take it at bedtime) or perhaps atenolol or metropolol 9again, ask for the long-acting or extended-release ones, at the lowest possible dose). If none of those work for you or all cause side effects, try something different - not one of the ones ending in -olol. Besides beta blockers (though, again, there are about 40 to try and some act in entirely different ways), there are also newer drugs like ivabradine that might help.<br /><br />Bottom line is that it can sometimes take a lot of persistence and patience to find just the right med and right dose for you, but it is worth the effort!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-82601027205695829342020-11-24T15:06:36.817-05:002020-11-24T15:06:36.817-05:00Hi Sue
Thank you for sharing your experiences wit...Hi Sue <br />Thank you for sharing your experiences with CFS and beta blockers,I started 10mg propranolol for the last few days,feeling very tired,nauseous and dizzy will this eventually settle Thank you in advance<br /><br />Kind regards <br /><br />GlendaAnonymoushttps://www.blogger.com/profile/04553731581393885732noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-70179548896982568912019-05-31T09:53:11.320-04:002019-05-31T09:53:11.320-04:00Just to be clear, in addition to trying inosine, I...Just to be clear, in addition to trying inosine, I would definitely talk to your doctor about treating your OI - those two things have had the biggest positive impact on our lives.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-57110906792109841742019-05-31T09:50:59.112-04:002019-05-31T09:50:59.112-04:00Yes, I still see comments even years later - thank...Yes, I still see comments even years later - thanks for stopping by and taking the time to comment, Denise.<br /><br />It is unusual to have a low HR with POTS but since you said it increased while standing and met the POTS criteria, then yes, that is still POTS. I was curious that you didn't mention what your BP did during the standing test...? NMH, where the BP falls while upright, is even more common that POTS and many of us have both. Knowing which conditions you have can help to guide which treatments to try.<br /><br />Beta blockers might not be best for you, given that your HR is normally low - I would check with your doctor on that one (i.e. HOW low is your resting HR, etc). There are other, newer options, like ivabradine and mestinone, that are used to treat all kinds of OI.<br /><br />Yes, you understood my statement correctly - I rarely crash from exertion anymore! :) Treating OI CAN improve your ability to socialize for sure because OI affects you while sitting up as well as while standing up - any upright position makes it hard to hold your BP and HR steady. Treating OI is a big part of that, but only one piece. Here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again: <br /><br />http://livewithcfs.blogspot.com/p/mecfs-treatments.html<br /><br />So, my improvements over the past 17 years have been from ALL of those treatments combined, not just treating OI.<br /><br />From your description of crashes from mental exertion plus how debilitated you are plus that you are getting worse, it is VERY likely that you have some infections behind the scenes. Diagnosing and treating those infections - whether they are tick infections or reactivated viruses or molds or fungal - can greatly improve your condition...and having infections can prevent you from improving no matter what you try. You mentioned that you are seeing an ME specialist - can you ask him or her to test you for the common infection culprits in ME/CFS?<br /><br />In the meantime, from among all the treatments listed in that post above, you might want to start with inosine. It's an inexpensive supplement that helps to normalize the immune system, thereby helping to improve ALL symptoms, since immune dysfunction is at the heart of our disease. It's explained on that treatment post I linked to above, but here is a direct link to more info: <br /><br />http://livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html<br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51815464123069816812019-05-31T09:39:33.724-04:002019-05-31T09:39:33.724-04:00Two thoughts on that, Denise -
1- Re-read this b...Two thoughts on that, Denise - <br /><br />1- Re-read this blog post about using a long-acting beta blocker instead of the short-acting one (which your daughter took, given the dose and the fact that she took it twice a day) - it is common, as I explain in this post, for the short-acting ones to make things worse because everytime they wear off, your HR goes even higher than it was. And twice a day is not nearly enough to keep it in her system 24/7 - much better off trying the long-acting version of propranolol or some other type that lasts for 24 hours.<br /><br />2 - As I explain here, there are over 30 different beta blockers on the market (plus some other meds that aren't exactly beta blockers but in similar classes and used to treat OI). Just trying 1 beta blocker at 1 dose is just the beginning! She can try the long-acting propranolol, as I explained above, or try something else entirely, like nadolol or atenolol or something entirely different (there are several different categories within those 30+ types). It can take a lot of trial and error, so you don't want to give up after just trying one. It is SO life-changing, it is worth the time and effort to keep trying. Patience and persistence really pay off!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59469694118113776592019-05-31T09:33:50.786-04:002019-05-31T09:33:50.786-04:00Fred -
I don't know if you'll see this s...Fred - <br /><br />I don't know if you'll see this so much later, but I just re-read your question and it hit me that it sounds like you are describing Sudafed aka pseudoephedrine (little red pills), which is a common decongestant sometimes used for OI - but, as you described, it can sometimes increase your heartarte (its effect is to constrict your blood vessels which can be helpful - I sometimes take it - but not everyone can tolerate it. Given that your HR went UP when propranolol and other beta blockers will definitely DECREASE your heartrate, it sounds like the meds might have gotten mixed up.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36387917683813123262019-05-30T19:42:21.814-04:002019-05-30T19:42:21.814-04:00Not sure if anyone reads these replies long after ...Not sure if anyone reads these replies long after you wrote the post, Sue, but I'll try. I was dx with POTS last year, as was my 33 year old daughter, when we began working with a new ME doc. We did the NASA lean test. My daughter isn't really able to do any treatment, she reacts to many meds. I notice a difference with compression (yoga pants) and increasing salt intake, already drink lots of water. I wonder if a BB would be appropriate and will ask doc next time. She said my HR is low. Though it does increase by the right percentage standing for more than several minutes. I have only had tachardyia one time that I'm aware of, i the night. very rarely during daytime, perhaps for a minute or so when I suddenly used a lot of muscles after lying down. So, perhaps I don't really have POTS. If it's just OI, can BB still help? Another Q, it sounds like your increase in ability to exercise and be active hasn't caused PEM, if you stay in your new limits. I have PEM from mental exertion, not only physical. Or emotional stress. Do you notice you can read longer or have longer conversations with someone on BB too? I'm much more debilitated than you, so not sure I should compare. My ME has progressed steadily over 28 years, particularly the past 15. Thanks, Sue!Denise Bhttps://www.blogger.com/profile/09302927858945561554noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-9570873637869414972019-05-30T19:26:57.976-04:002019-05-30T19:26:57.976-04:00It's years later, but my daughter had a simila...It's years later, but my daughter had a similar response to 10 mg twice a day of Propranolol. She had more anxiety, emotional issues (like PMS) and more nightmares. She has PTSD, and believes that has to do with it.Denise Bhttps://www.blogger.com/profile/09302927858945561554noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-33947940126042765402017-01-06T10:34:14.611-05:002017-01-06T10:34:14.611-05:00Good for you for sticking with until you found the...Good for you for sticking with until you found the right one! It can take a lot of trial & error for some people, so patience & persistence is REALLY important.<br /><br />You also bring up an excellent point - many people with ME/CFS are diagnosed with anxiety when it's really OI causing it - treat the OI and the feelings of anxiety disappear!<br /><br />Glad you found a solution for yourself!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-71030501504059312302017-01-05T20:07:22.424-05:002017-01-05T20:07:22.424-05:00The wrong ones gave me palpitations, the right one...The wrong ones gave me palpitations, the right one (Bisoprolol) helped lower my heart rate and raise my blood pressure to normal. What a difference. No more anxiety or sweaty palmsAnonymoushttps://www.blogger.com/profile/13597343529864622684noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-26530265100380162462016-02-23T18:10:10.888-05:002016-02-23T18:10:10.888-05:00Hmmm...I don't recall them being red pills whe...Hmmm...I don't recall them being red pills when I took them. One thing you could check on your own, with the pharmacist, is to make sure they gave you the right pills and/or check to see if there is the same med available from a different manufacturer (that might not contain the dye or whatever is affecting you). I have to do this with certain meds that contain lactose - some manufacturers use lactose while others don't. In any case, the pharmacist is a good person to start with.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-37128849375242906562016-02-23T17:32:43.274-05:002016-02-23T17:32:43.274-05:00Thanks, Sue. 10mg of propranolol sent my heart ra...Thanks, Sue. 10mg of propranolol sent my heart rate soaring 40bpm- lying down. The pills are dark red and I wonder if it might be the colouring that is causing the reaction rather than the drug. The main problem is needing to revisit my doctor and the 4 day payback, from the doctor's visit.Fredhttps://www.blogger.com/profile/17839771527219513733noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1144773474381839462016-02-23T16:37:12.678-05:002016-02-23T16:37:12.678-05:00That does sound weird, Fred - I would check that o...That does sound weird, Fred - I would check that out with your doctor. Propranolol, like all beta blockers, should slow down your HR not make it go faster! Strange that you can't get the long-acting type there if you have the short-acting type.<br /><br />I know this must be frustrating for you, but be patient and persistent. It can take several trials to find exactly the right beta blocker at the right dose for each person - and we are all different. Be sure to try different doses (usually for us, less is better - too much can increase fatigue) and if one (or two!) doesn't work, try another - there are about 3 dozen different ones and some are entirely different types. Good luck & let me know how it goes!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-63875021096222334252016-02-22T21:07:47.712-05:002016-02-22T21:07:47.712-05:00Sue I was on atenolol (25mg twice a day), which wa...Sue I was on atenolol (25mg twice a day), which was great with my HR, but I started getting urticaria, if I slightly scratched/touched myself. I changed to propranolol - (10mg twice a day) - it seems weird but the propranolol seems to be making my heart race and I feel anxious??<br />I was told we can't get long acting propranolol in Australia.<br />Fredhttps://www.blogger.com/profile/17839771527219513733noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-91413736187180485912015-10-14T09:07:28.668-04:002015-10-14T09:07:28.668-04:00Hi, Rachel -
Glad to hear you are trying beta bl...Hi, Rachel - <br /><br />Glad to hear you are trying beta blockers. There's really no reason to think of POTS and CFS as separate conditions - Orthostatic Intolerance (including POTS) is an integral part of ME/CFS, so you can't really differentiate between them. Though I completely understand the impulse to analyze - I do that constantly!!<br /><br />5 mg is a tiny dose of propranolol, so you may not be seeing much effect yet. Though it was smart to start low! Are you taking regular propranolol or the extended release type (that would have ER after the name)? The regular type only lasts 4-6 hours and then wears off, so if you take it at bedtime, it may help reduce HR spikes/tachycardia while you sleep but it will be completely worn off by morning. The ER type - as I explain in this post - you only take once every 24 hours, so if you take it at bedtime, you will wake up ready to go, with a nice low/normal heartrate! As I describe here, I found the ER type much more beneficial.<br /><br />Again, 5 mg is a tiny dose so you might not be seeing much effect yet - how much does your heartrate decrease after you take it? Mine drops about 30 bpm at the dose I take, which bring me down into a more normal range so that I can be active without going over my AT and crashing.<br /><br />Oh, and yes, the beta blockers still work great for my son and I - once you find the right one at the right dose, it shouldn't lose effectiveness over time. He and I both take the 24-hr kind at bedtime once a day.<br /><br />And, yes, they significantly reduced my crashes from exertion. I still have limits. If I am active (walking, etc.), I wear my heart rate monitor and keep my HR below my AT (not too hard to do with the BBs). But I know I still can't go forever. When I am doing well, I can manage up to an hour of exercise/exertion without crashing afterward - far better than I was before BBs.<br /><br />The BBs won't necessarily make you feel better right away - it's more of a positive domino effect. They bring down your HR, allowing you to be more active. Then, as you are able to do more - walk, light weights, getting out and about, etc. - your physical condition and muscle strength will improve gradually, which will help you to feel better and will further reduce the effects of OI/POTS.<br /><br />But first, you have to find the best dose for you - one that brings your HR down to normal levels, without any additional fatigue as a side effect. You've done the right thing by starting nice and low - see how much your HR drops on this dose and if it isn't enough, then gradually increase the dose until you find the best one for you - we are all different.<br /><br />Hope that helps!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-35294488851617561222015-10-14T00:03:04.809-04:002015-10-14T00:03:04.809-04:00Hi Sue,
How are the beta blockers currently work...Hi Sue, <br /><br />How are the beta blockers currently working for you? I just started propranolol but so far am only doing 5 mg at night because I don't know how well i tolerate it yet. I do feel it will be a key in helping, though. I am curious if you are still seeing success. <br /><br />I'm having a hard time differentiating between the CFS fatigue and the POTS as I have both. I'm pretty sure the POTS is one of the reasons I crash so much if I overdo it, but it's still tricky to know. Prior to beta blockers, were you "crashing" a lot? I am mostly bed-bound. It sounds like your son was also. <br /><br />Thanks so much! :)<br /><br />RachelAnonymoushttps://www.blogger.com/profile/17579247228445006775noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19879938454715088572013-06-20T04:25:47.171-04:002013-06-20T04:25:47.171-04:00I just googled and saw that three weeks at the Ger...I just googled and saw that three weeks at the Gerson clinic costs $16500. Then one has to afford the monthly costs of organic products and supplementsAnonymoushttps://www.blogger.com/profile/08798954262283385826noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78711349159181409042013-01-22T11:19:15.164-05:002013-01-22T11:19:15.164-05:00Hi, Alisa -
I am lucky - I'm not one of thos...Hi, Alisa - <br /><br />I am lucky - I'm not one of those with ME/CFS who over-reacts to small doses of medications, so I can normally tolerate normal doses. In fact, I tend to metabolize drugs very quickly so sometimes I need more than most people.<br /><br />Just to clarify, Dr. Rowe is not my doctor - he only takes on pediatric patients, though we and our doctors have relied on him for years for advice.<br /><br />60 mg is not actually a high dose for the 24-hour extended release type of propranolol - it is the lowest dose. You have to consider that that amount has to last for a full 24 hours, so spread over that much time, it's actually not very much - about the same as what I was taking before for about 14 hours.<br /><br />Interesting that it disrupts your sleep - Dr. Rowe advises taking the 24-hour types before bed because he says that some of our night-time waking and light sleep is due to random bouts of tachycardia while we sleep, so many CFS patients feel they sleep better while on beta blockers. I haven't noticed a difference with my sleep, though.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1767815745620255422013-01-21T20:48:24.760-05:002013-01-21T20:48:24.760-05:00thanx sue. i take 10 mg propanol in the am and alw...thanx sue. i take 10 mg propanol in the am and always stay in bed until it takes effect and 5 mg in the pm. i take half in the pm because it seemed to keep me from sleeping. i am curious about using the long acting and wonder when dr rowe began prescribing such high doses. very interesting and i appreciate your time and effort. Alisahttp://theartoflifeinterrupted.tumblr.com/noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-74195298319475919862013-01-13T20:03:36.195-05:002013-01-13T20:03:36.195-05:00Thank you so much for your time and patience to sh...Thank you so much for your time and patience to share with other CFS sufferers! I have sent you an e-mail message too.Unknownhttps://www.blogger.com/profile/04610438821632575895noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-69932276843069340492012-12-20T17:58:49.733-05:002012-12-20T17:58:49.733-05:00Almost thirteen years ago I contracted CFS and am ...Almost thirteen years ago I contracted CFS and am now writing this comment in hope of helping others by sharing my experience in overcoming it. CFS began, for me, with almost an entire month in bed thinking at first I had a very persistent flu. It was significantly different from past flus in many ways, however. I had feverish nights where I thought I had “sweated” out the flu but when I got up the next day I didn’t feel better. After two weeks I went to a physician and he prescribed an intensive course of antibiotics. I took them but there was no improvement in my condition. After a month at home I had to return to work thinking I would just “tough” it out and the flu would eventually leave on its own. Things continued to be unusual with my condition. I mostly felt chilled to the bone even with a lot of clothing on. I was continually weak and noticed I couldn’t concentrate on what I was doing. There seemed to be a fog in my brain. My nerves were fragile. This was the beginning of my understanding about the “relapse” factor of CFS. If I strained or “pushed” myself my condition got worse the next day. If I pushed myself one day when I was feeling slightly more energetic than the day before I had to “pay” for that exertion over the next weeks as my energy diminished and my conditioned worsened. It might be three weeks or a month later that I might return to that original day of slightly higher energy. The nighttime experience of CFS was also physically and psychologically torturous. On the best of nights I would sleep lightly, getting up barely feeling rested at all. Most of the nights however were punctuated by night sweats. I would sleep no more than two hours and wake up soaked in sweat. I would have to change clothes and sheets in order to get another 2 hours of sleep and do the same thing over again. Most nights I would have to lay out 3 to 4 sets of night clothes and towels to sleep in for one night. Then on top of the very low energy levels, the poor concentration, the frail nervous system, the “relapse” roller coaster and the night sweats there was the digestive problems. Most of what I considered normal foods made me feel worse within an hour after eaten. Almost three years after first contracting CFS I got lucky. I found a book written and published in the UK that was written by a man who had the identical symptoms I had. He had taken it upon himself to find a cure, not just for himself but for others as well. The book was mostly about the failures of different treatments to work but he found something that was so immediately curative that he began to write this book before he had even finished the newly discovered treatment. This man introduced me to the miracle of The Gerson Therapy and recommended it to every CFS sufferer after he had done extensive medical research on its premises and found them sound. I immediately contacted the Gerson Therapy foundation located in San Diego California and started to personally investigate their literature and the medical claims it made. After buying and reading three college level texts on human and molecular biology I was convinced that The Gerson Therapy could work. I saved up money and began the Gerson Therapy in April of 2003. Nine months later I was not only fully cured of CFS but I was restored to the vigorous health I had experienced in my young twenties. Ten years later I can say without exaggeration that my health continues to astonish me. I am still healthier than I ever dreamed possible. The Gerson Therapy not only cured me of CFS but opened up a whole new level of physical and psychological health that I didn’t know existed prior. I only want to share the joy and appreciation of good health that developed in my life after being healed of CFS. Please contact me directly if you have any questions or doubts: prk699@yahoo.com Blessings and Health to You! KilayaKilaya Ciriellohttps://www.blogger.com/profile/06845497317035190276noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-26832680031589693892012-12-13T08:09:24.676-05:002012-12-13T08:09:24.676-05:00So glad beta blockers are helping you, too! That ...So glad beta blockers are helping you, too! That has been Jamie's experience, too - he still has bad days but they aren't nearly AS bad and they are much rarer. He's taking just 3 classes each semester for right now, which leaves him time to rest when he needs to.<br /><br />He takes Mg and K (potassium) too - Dr. Rowe recommends potassium supplements for anyone on Florinef, and he takes the Mg malate at bedtime to help with sleep and pain.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-40251622667340813512012-12-12T23:02:27.883-05:002012-12-12T23:02:27.883-05:00This is great news. I'm so glad that Jamie is...This is great news. I'm so glad that Jamie is able to have a normal college experience. I keep my blood volume up by taking a lot of electrolytes - magnesium, potassium and sodium. The salt alone didn't do it for me. With sufficient blood volume, I benefit a lot from my beta blocker, which I take before bed. There are still some days or weeks when my heart acts up & I need to rest more, but these episodes aren't nearly as intense as they have been in the past.KipperCathttps://www.blogger.com/profile/12011060884920219554noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-46890293504193342212012-12-05T15:47:59.264-05:002012-12-05T15:47:59.264-05:00I guess we must be looking at different studies. ...I guess we must be looking at different studies. The consensus I found while looking into this said that "up to 97%" had some form of OI. So in some studies they could've found a much lower number.<br /><br />Anyway, I'm glad they're helping you. I couldn't tolerate 'em years ago...they gave me disturbing heart palpitations, so am looking into building up my blood in other ways, and in the meantime, using more salt. Jannoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-22492543444216957802012-11-30T19:18:48.217-05:002012-11-30T19:18:48.217-05:00Welcome to the teen group, Nathan! I forgot to me...Welcome to the teen group, Nathan! I forgot to mention that my own 18-year old son is a member, too. Feel free to write a brief post to introduce yourself.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.com