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Posts posted by RecipeForDisaster

  1. Metoprolol is the only thing that has improved sleep much for me. It partially quiets the pounding tachycardia. I do sometimes use melatonin, theanine, or valerian root to "cover up the sick feelings" and make it easier to sleep despite them. Magnesium taurate or glycinate has seemed to help, too.


    I haven't tried clonidine although I am sure it would help - my BP is far too low for me to use it.

  2. I have two 15lb $30 ones. One is not baffled or quilted so the weight clumps up badly. The other is great... it's quilted, and is super soft. I really love them and feel they help my BP to be a little higher, plus I do think they help me to sleep. I actually layer both even though that's supposed to be too much weight for me. I got them at Christmas Tree Shop and Job Lot, respectively. The non-baffled CTS one could be quilted yourself... the price is right! Good luck!

  3. I have been told that beta blockers interfere with melatonin, so I was told to take a little (up to 1mg) melatonin with my metoprolol. In my case, metoprolol enables me to sleep, because it quiets down my overactive heart. My sleep is awful in the first place and has been for ages.


    I take magnesium taurate or glycinate before bed as those chelates have helpful compounds for sleeping.

  4. My beta blocker dulls the feeling somewhat, and I am allowed to take more of it when the feeling is worse. I do take magnesium taurate for it as well, because it doesn't hurt. My heart is like a sledgehammer no matter the rate or situation. It would make it impossible to sleep if not for the beta blocker. I can easily see the impulse in several parts of my chest, neck, and abdomen. The weird thing is that my BP is low and I barely have a weak pulse in my wrist.

  5. It is incredibly disturbing not to have a diagnosis and to have meds thrown at you in hopes that they might help. It's better than not being allowed to try therapies that could work, but it's still very hard to swallow. 


    I'm on just about every possible therapy for dysautonomia and low BP... I don't know if I'm that refractory, or all the doctors are on the wrong track. They don't know what my issue is, but the meds should still be helping more than they are, and my problems keep creeping so that I'm consistently, slowly getting worse over time. I'm grateful for the small benefit I get from my treatments, of course. You are not alone!

  6. I didn't have your luck with Florinef (more side effects than helpful effects for me), but have been on midodrine for years. I'm on a lot of other stuff with it.


    Nighttime is one of my worst problems, too. My BP is so low that I bet I could safely take midodrine before laying down, but I won't. What I do is take 2.5mg every 90 minutes when I need to. That dose gives me no side effects and I can keep a fairly steady level.... I am allowed to take up to 60mg a day but I wouldn't. The side effects from taking 10mg at a time are too much for me. Its too bad there isn't a sustained release 8-12 hour version. You may need to talk to your doctor about something else to take at night or possibly something like licorice root to take the place of Florinef. That has been the best answer for me, including a beta blocker at bedtime. I am suspected to have low blood volume as well. Good luck!

  7. Call me crazy, but if one can contract their own soleus muscles, wouldn't that have the same positive effect as this is supposed to cause? It says that it makes the soleus contract. 

    I do find my sequential compression device to be helpful, but that actually squeezes blood up my leg in stages... the effect doesn't feel like anything I could accomplish with exercise. I'm going to try to actively work my soleus muscles whenever I think of it. It sure won't hurt!

  8. I've did have a home sleep study which did show mixed sleep apnea (no EEG), and I use an APAP every night. I think it reduced these episodes, which used to be pretty much continuous. Without a beta blocker, they'd be once a night, at least, and the "smoldering" would keep me from sleeping most of the night anyway. I'm not on anything that would exacerbate central apnea and I have no risk factors for obstructive. It's just there.

  9. I wish I could help, but I can only tell you I have similar problems... and the side effects from midodrine keep me at a 2.5mg dose every 2-3 hours, which works okay for me... no side effects and some good effects. At 5mg I get chills and crawling skin too severe to manage. At 10mg (recommended by my cardiologist because my BP runs so low) I got horrible cold chest pain and pressure. I depend on it, though, because it does bump the BP up.


    I wake up at 2-3am although this does seem better when I take the higher dose of metoprolol (37.5) . Pounding heart, sweating, hot, for absolutely no reason. It's nearly impossible to get back to sleep. I'm usually up for the day. Oddly, if I take the higher dose of metoprolol, I tend to get bad nightmares lately. Those will wake me up and I am often upset about the content. It's a rock and a hard place. If you can take a beta blocker, it might help.

  10. One of my doctors recommended this in desperation for something to increase my BP. I didn't think it'd help much, but I got a Circuflow 5150 and I definitely feel better when it's running, and maybe some time after. It increases my BP about 10 points, just by inflating and squeezing blood up my leg. Mine only came with one leg sleeve and they are quite expensive, so I am on the lookout for a deal on a second one. It comes halfway up my thigh. For now, I'm doing an hour on each leg while I read before bed. It's tough to do much of anything while it's running, but it feels good.

  11. My feeling is that the stress and discomfort of the test increased my baseline BP (clearly documented - about 30 points higher diastolic than at home) so I don't come up positive when I'm there. I get blacked out vision and extreme lightheartedness when I stand, but not during a TTT. My BP doesn't dip low enough. I wish I could document anything but I'm very different in my natural environment :(

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