story Posted September 27, 2014 Report Share Posted September 27, 2014 Hi. I was found to have numerous spikes in my heart rate during the night (200 plus per sleep study) which has led to significant insomnia & debilitating fatigue. I've recently tried beta blockers ie metoprolol, propranolol both of which made the insomnia much worse. I literally wasn't able to seep AT ALL. The doses were very small since I tend to react often times in a not so positive way. Has anyone had this experience? Would there be a different class of drug that would be more helpful? Appreciate your responses. story Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted September 27, 2014 Report Share Posted September 27, 2014 Holy heck, that's scary! What did the sleep study docs recommend? Quote Link to comment Share on other sites More sharing options...
kay1964 Posted September 27, 2014 Report Share Posted September 27, 2014 Story,i recently just got home from my doctor vist in toledo ohio.i too did not tolrate betas,we are trying knew one Bystolic 2.5 once a day, (i cut even that dose in half)i am very very med senative.Dr Grubb says it is a relatively new beta-blocker that is most beta 1 selective agent currently made has far fewer side effects and dose is once a day.also for me it is pill form i can cut into.no extended release.dr grubb said take as i could tolrate it.so far i have been doing ok i don't take it everyday,but what i take is helping surges at nite and my increased heart rate.so far it's the only med i can take in my many med collections through my life long illness of heds and pots. Quote Link to comment Share on other sites More sharing options...
dkd Posted September 27, 2014 Report Share Posted September 27, 2014 I take a beta-1 selective bb (betaxolol) and it hasn't affected my sleep. I read something about the non-selective ones can cause sleep disturbance and nightmares/weird dreams (especially propranolol). I'm sure if you google you can find something that says to that effect. So maybe your doc could try a cardio-selective one. Good luck! Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 27, 2014 Report Share Posted September 27, 2014 http://forums.dinet.org/index.php?/topic/23848-newish-pots-information/?hl=%2Balpha+%2Bdelta#entry222687The link does not explain anything about beta blockers. But, within the thread is a paper published in Feb 2013 that helps explain why POTS patients have such terrible sleep problems. Thought you might want some info on it. Quote Link to comment Share on other sites More sharing options...
story Posted September 28, 2014 Author Report Share Posted September 28, 2014 Thank you all for the excellent suggestions. I'll look into the beta-1 selective meds. Also, thank you for the link. I neglected to mention that my sleep issues were caused by a neck injury so some of my issues may be due to instability. However, I've had elements of dysautonomia throughout my life (as others in my family) My recent sleep study yielded excellent info but the doc unfortunately made no recommendations / referrals. The heart spikes were the majority of awakenings with some episodes of apnea & limb jerking. I also cut my pills in half just in case I don't react well. Tammy Kay ? Were you required to take a tilt table test or similar tests prior to seeing Dr. Grubb? I also have the aldosterone/renin/collagen connection and my functioning during the day is severely impaired due to sleep deprivation. If I could ONLY get some regenerative sleep it would resolve so many issues. Quote Link to comment Share on other sites More sharing options...
stephsurf Posted September 28, 2014 Report Share Posted September 28, 2014 Just to add my experience in regarding beta blockers. I take propanolol and I notice that it definitely makes my sleep worse if I take this immediately before I go to bed, so I cut my dose down a little bit and I notice a little improvement. Before I would wake up at regular intervals during the night for no particular reason and sometimes have nightmares which I never hardly ever get at all. It is definitely mentioned as one of the side effects of these drugs though, but like others have said the more cardio-selective ones should reduce this Quote Link to comment Share on other sites More sharing options...
kay1964 Posted September 29, 2014 Report Share Posted September 29, 2014 Hi story, no did not have to do tilt table for dr grubb, because I have had four since 2007 all four never changed they showed i did have pots.how ever that was always one of my symptom as doctor Grubb said, my primary problem was heds.he did not have to order or do any test because before going to dr grubb I brought all my records with me.he knew rite away I had heds.my doctors from my cardiologist, to my neurologist, to endocrinologist, and my gastrogoloist,gave me my records from all the test they performed, along with dr raj records from vanderbilt university. So I had alot.dr grubb did perform the Beighton test and from my score I was definitely diagnosed with heds. Plus with my history and family history it was obvious. I go back to dr grubb in 7 months.I can't say enough about him and his staff, wonderful. Worth the trip, so glad to have him as my doctor:) however still have to have my other doctors at home in place.he is a very very careing person and physician:)and by the way the ten hour trip wasn't bad, I actually handled it better than I thought I would. Hope you find what can help you to rest and sleep better. Its always trial and error.sleep is so needed and precious for us yet so hard to get.that was my number one complaint to dr grubb, my nite time surges. For now trying bystolic if it doesn't work, then he said next clonidine or possibly the agent doxepin.we are only dealing with most critical issues for me one at a time, was his recommendation. I'm so sensitive. Quote Link to comment Share on other sites More sharing options...
story Posted September 29, 2014 Author Report Share Posted September 29, 2014 TammyKay, Thank you for the input. I've heard wonderful things about Dr. Grubb & it's good to know you have a great team of docs who are following you. I've never had a TTT but I have a diagnosis from a sleep study. I don't know how much a TTT would contribute in my situation. I've been formally diagnosed with a collagen disorder but not EDS and my family has many of the same traits. So I would consider my primary problem to be instability due to ligament laxity affecting the cervical spine. For me I believe PT is critical to my recovery since it would help stabilize. I've recently been able to locate some good docs but most are out of town. Glad you handled the trip so well. I experience autonomic symptoms when I fly & just the thought of getting up Sooooo early is overwhelming, as I'm sure you know. I remember once when I took a Halcion for a night MRi I couldn't believe how well I slept. Of course I don't think it's something you would want to take every night since it's a hypnotic. But, I actually felt like a human being! I certainly hope you find what works for you. I've heard that sleep is one of the easier POTS problems to deal with but I don't know how true that is. These are all fairly new developments for me so I'm still learning & everyone is so different in their responses. Appreciate your input. Wish you success with Bystolic. :-) story Quote Link to comment Share on other sites More sharing options...
story Posted September 29, 2014 Author Report Share Posted September 29, 2014 TammyKay, Was thinking. How long has it been since you've been unable to sleep? Is this just the beginning of your treatment plan? My issues have been going on for several years but I remained undiagnosed so nothing was really being done. I had my first sleep study done several years ago but it was read as normal when it wasn't. The 2nd study is recent so I've just begun the beta blockers. I was wondering where you were in your journey. Mine has obviously taken me the long way around town. story Quote Link to comment Share on other sites More sharing options...
kay1964 Posted September 29, 2014 Report Share Posted September 29, 2014 Story, I too have suffered my whole life, symptoms have progressed through the years.because of child bearing, surgeries, to stresses of work, and stresses of life.unfortunately I was not aware of how sick I was at times and pushed beyond what I had and caused more damage. But fortunately I knew through all my symptoms and diagnosis and test we still where missing something. The sleeping issues have always been there, last 6 to 7 years symptoms have developed into these surges.remember too menopause brings about for some worsening of their symptoms. So the last 7 years I have the shadow of menopause right with me.:(I think at this point agin my treatment plan is to deal one at a time with my primary issues that I definitely need some relief on.I too must have visited the same town you where in I went long way around too:) thank you for asking and sharing. Quote Link to comment Share on other sites More sharing options...
story Posted October 1, 2014 Author Report Share Posted October 1, 2014 TammyKay, Thank you for your response. It made more sense reading your post. (often times I need a visual) I've had issues my entire life also but was totally unaware. I slept well, though, until my neck injury. Or, so I thought. Now the surges. The combined stresses really do add up whether they be physical, emotional or a combination thereof. I've had too many times when I didn't have a choice but to push myself. I guess now it's time to slow down a bit, relax & get well. :-) story Quote Link to comment Share on other sites More sharing options...
yogini Posted October 2, 2014 Report Share Posted October 2, 2014 IT is hard to tell what the problem is - it could be the wrong beta, the wrong dosage, time of day you are taking or betas could just be wrong for you. Sometimes you need to combine betas with a BP increasing med like florinef. When you say HR spikes what do you mean -- how much? Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 2, 2014 Report Share Posted October 2, 2014 I take a calcium channel blocker. Diltiazem. It has been pretty good for my HR and does not effect my sleep. I was unable to tolerate beta blockers. Quote Link to comment Share on other sites More sharing options...
teacherlauren Posted October 2, 2014 Report Share Posted October 2, 2014 Hi. I was found to have numerous spikes in my heart rate during the night (200 plus per sleep study) which has led to significant insomnia & debilitating fatigue. I've recently tried beta blockers ie metoprolol, propranolol both of which made the insomnia much worse. I literally wasn't able to seep AT ALL. The doses were very small since I tend to react often times in a not so positive way. Has anyone had this experience? Would there be a different class of drug that would be more helpful? Appreciate your responses. storyHi,I was put on a much safer medication that my cardiologist recommended called Ivabradine. Ok, the "scary" part is that it is not yet legal in the US, but is on the FDA fastback to become legal. It is legal everywhere else. For me, it has no side effects except lowering my heart rate. It has been really a miracle! I know not everyone is open to taking medication like this but I thought I would put it out there... :-) Quote Link to comment Share on other sites More sharing options...
artluvr09 Posted October 3, 2014 Report Share Posted October 3, 2014 I have been on atenolol for a year now since last October and I have noticed I get nightmares a lot more often. last night I had 3 different vivid dreams that I still vividly remember! the first one was a nightmare and the other two were just dreams but still remembered vividly. It's odd. I wish I didn't remember dreams this vividly. when I do remember dreams vividly I wake up feeling kind of off in a fog. Quote Link to comment Share on other sites More sharing options...
story Posted October 3, 2014 Author Report Share Posted October 3, 2014 Thank you for your answers. I dont know the level of spikes but they were very frequent per my sleep study. A Holter monitor registered very little. I begin the beta 1/2 recommended dose & I take it at night as directed. Yogini, you bring up a good point. Beta blockers may just be wrong for me. I've recently noticed that sleep is almost impossible if I'm out & about during the day so daytime activity definitely has an influence. If I spend a few days at home my sleep is much better. Does this resonate with anyone? Perhaps, it could be the overstimulation of being out. ??? Trying to figure all this out. I also have spinal instability & am thinking this could be the driving force. I'm meeting with the appropriate doc to help sort this out. My sleep has abruptly gotten so much worse for no apparent reason. I can see now that it can be a bit complicated & everyone has a very different set of parameters. Thanks, gjensen, teacherlauren.story Quote Link to comment Share on other sites More sharing options...
story Posted October 4, 2014 Author Report Share Posted October 4, 2014 Artluvr09, Sorry to hear about your nightmares. I also have vivid dreams & I believe it's because I rarely get into REM. Thanks for your input. Quote Link to comment Share on other sites More sharing options...
krystal Posted October 4, 2014 Report Share Posted October 4, 2014 beta blockers are known to deplete your melatonin and insomnia is a common side effect Quote Link to comment Share on other sites More sharing options...
story Posted October 9, 2014 Author Report Share Posted October 9, 2014 Is 2-3 nights enough time to see if a beta blocker is working? If it results in impaired sleep in this short time frame can one assume that it's just not the correct med?Sleep is significantly worse with the BB. Quote Link to comment Share on other sites More sharing options...
corina Posted October 9, 2014 Report Share Posted October 9, 2014 Story, if a bb is working is up to you and your cardio to decide on. We are all so different, all we can do is share our own experiences which can be helpful for you (and everyone of course ) to find the right track! Quote Link to comment Share on other sites More sharing options...
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