tag:blogger.com,1999:blog-22576999.post2201006232990734194..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: Challenges in Diagnosing Orthostatic IntoleranceSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-22576999.post-83811374383693996862018-10-24T14:28:01.532-04:002018-10-24T14:28:01.532-04:00Those medications I listed are simply other beta b...Those medications I listed are simply other beta blockers (like the metropolol you tried). There are over 3 dozen of them & we react differently to each one, so just trying one of them doesn't mean they won't work for you - it just takes some trial & error to find the right one - same with dosing. Read that blog post I linked to above for details.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-34759186347354522912018-10-24T14:23:41.325-04:002018-10-24T14:23:41.325-04:00Thanks so much for your prompt reply Sue!
To clar...Thanks so much for your prompt reply Sue!<br /><br />To clarify the "no difference in OI symptoms" comment. When I failed my NASA Lean Test and received my POTS comorbidity diagnosis in my physician's office - my heart rate showed that it elevated 30+ upon standing. Afterwards, I used a heart rate monitor to track my HR and to observe the spikes and so forth. After using these two medications + increased fluid intake / increased salt intake / electrolytes, these still did not mitigate my HR spikes upon standing at any point - validated by my hear rate monitor that there was essentially no difference when using this treatment method / not using. Hopefully that makes sense? <br /><br />I know patience is definitely the key - I have not heard of these 3 medications when discussing with my doctor. I will note and possibly ask in the future.<br /><br />Thanks again Sue!<br /><br />Best,<br /><br />DakotaAnonymoushttps://www.blogger.com/profile/04159262002055963740noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-3643237395802413992018-10-24T14:10:05.189-04:002018-10-24T14:10:05.189-04:00Hi, Dakota -
Thanks for sharing your story - and...Hi, Dakota - <br /><br />Thanks for sharing your story - and for the kind words about my blog - so glad you've found it helpful.<br /><br />When you say "there has been no difference in your OI symptoms" with the various treatments you've tried - what exactly do you mean? The metropolol didn't reduce your HR? In our experience, the beta blockers didn't immediately make us feel better - it was more the longer term effects of reducing HR and thereby allowing us to be more active which created a positive domino effect over time.<br /><br />Also, metropolol is just 1 beta blocker and there are almost 40 different ones! Some of them have entirely different mechanisms of action. LOTS of people need to try 3 or 4 or more before finding the one that works best for them - we are all so different. The ones that are most commonly used for ME/CFS patients include atenolol, nadolol (which my son takes) and propranolol (which I take). And best results come from a long-acting beta blocker (24-hour type) taken at bedtime - the short-acting ones can actually make things worse because the HR jumps back up each time they wear off. Here's more info & tips on finding the right one and the right dose - your best best is some trial and error...AND patience & persistence!<br /><br />http://livewithcfs.blogspot.com/2012/11/switching-to-long-acting-beta-blockers.html<br /><br />Hope that helps - it really does take a lot of patience & persistence but it is well worth the trouble! Let me know how it goes - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-55192913379890873252018-10-23T16:11:45.054-04:002018-10-23T16:11:45.054-04:00Hi Sue!
Long time reader, first time poster. Fir...Hi Sue!<br /><br />Long time reader, first time poster. First, I just want to say I greatly appreciate your blog - such fantastic content and helpful information. <br /><br />I, like many diagnosed patients with CFS/ME, have POTS. I know this is probably more applicable to your next blog (in terms of treatment), but thought I would ask your advice in any event. I'm a patient with one of the well-known CFS/ME clinicians and so far we have tried Metoprolol (first), then Ivabradine (also known as Corlanor), and have increased fluid intake / electrolytes / salt intake. According to my FitBit Alta HR that I use daily, there has been no difference in my OI symptoms when I've incorporated any of these. I can sense that we're both feeling stuck on what to try (I'm going to purchase compression stockings) - I believe we're going to give Midodrine a shot next. Anything you could advise that has helped you and your son in OI, that we haven't already tried? Just trying to keep the faith that something out there may bring improvement. <br /><br />Kind regards and thank you in advance for any help you may offer,<br /><br />DakotaAnonymoushttps://www.blogger.com/profile/04159262002055963740noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-26484669024401472952018-10-20T08:37:39.071-04:002018-10-20T08:37:39.071-04:00Thank you, this and the links have been very usefu...Thank you, this and the links have been very useful. Often only a single sitting heart rate is taken, not even the standing test, the patient is ignored and the effects of OI can get worse. But it seems there is enough difficulty even getting an appointment with a specialist. People don't get second ones let alone many don't get the first. Blue Lanternhttps://www.blogger.com/profile/11781281482871521733noreply@blogger.com