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Has anyone had Midodrine make them sedated like a sleeping pill?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Gingergrrl, Oct 19, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I couldn't find a thread on this particular aspect of Midodrine and really wanted to get some feedback. I was started on Midodrine by my new cardiologist in the hospital, first at 2.5 mg 2x/day and now at 5 mg 2x/day.

    The goal was to raise my BP (which is in the 80's/50's without Midodrine) and to hopefully allow me to stand and walk more with less shortness of breath.

    With Midodrine my BP is in the mid to high 90's over 60's and a few times it's gotten over 100 (but that was with an old BP machine, that we questioned it's accuracy, and with a brand new machine, it has not yet reached 100 on the systolic.)

    Initially, even when my BP stayed low, Midodrine felt very calming and relaxing and it did allow me to do more. However, the last few weeks, it is literally having the affect of a sleeping pill or the way you feel with light anesthesia before surgery.

    I take it and within 1-2 hours, I literally cannot stay awake and then sleep for 2-3 hours. My entire family came over this afternoon to celebrate me & my dad's belated b-days and my husband's upcoming b-day and I was so sedated that I had to leave and go to sleep. It is literally like being drugged and knocked out. I did not open gifts or even say goodbye to anyone which really upset me.

    I am going to ask my doctor about this but has anyone ever heard of this before? I thought Midodrine was going to make me alert and awake but it is the exact opposite! I am wondering if it is something that with time I will adapt to and the extreme sedation will go away?

    Thanks for any feedback.
     
  2. lnester7

    lnester7 Seven

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    Remember you cannot lay down on it (so if you sleep keep an incline) or you will end up in hospital w bad BP.

    Never had that side effect, but I do have hyper insomnia periods, as I healed, I put it on different pills until I realized is just a CFS thing for me every now and then, LDN does it for me very bad or some meds when I increase. But talk to your doctor.

    Also, as you use midodrine, you feel better but your limits are the same, so watch you are not overdoing.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @lnester7 My doctor said it was okay to lie down as long as we checked my BP and it does not raise. Even lying down it does not go above the 90's/60's. I had been concerned about this too. In the hospital, they had told me not to lie flat for two hours after taking it so I try to wait the two hours but even when I don't, my BP never goes above 90's/60's.

    It sounds like for you it does not make you sedated which is great. I am not giving up on it but just curious if anyone else has had this weird side effect from it?
     
  4. lnester7

    lnester7 Seven

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    Hey Mine never goes up either on such a small dose (2.5mg) I just tell you because of others I hear here that had very bad side effects so you want to watch for that as you up the dose, when you get to the right dose you will not be able to lay (I found the hard way as I reached 10mg dose). I didn't end up in ER but the headache was out of this world, very unique and brutal.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @lnester7 Did your BP go up on the 5mg dose (what I am taking now) or not until you reached the 10 mg dose? The vast majority of the time, I do not lie down for two hours (what my cardio and hospital advised.) It does not give me a headache, just makes me incredibly sedated.
     
  6. lnester7

    lnester7 Seven

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    as I increase my dose my resting BP does too so at 5mg my regular BP would be about 100/60. at 10mg usually is about 110/80 or 120 / 90 . Now that I take 10mg and up I do not lay down anymore even if I get very sleepy (I try to lay inclined). I take 10 if just hanging in the house, 15mg to go to work and 20mg for special occasions like being on my feet if I have people over or Kids function.....

    We are playing w my dose so not sure what they will finally end up with. 3 Days before my period I still pass out left and right so it looks like I need some special dose for those days, working on that as we speak ( I have been hooked to a doctor heart monitor for one month). They are trying to figure how my period and month varies and if my heart has skips).
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @lnester7 Thanks for the info and when you said that you "Pass out" do you mean that you literally faint? I have never fainted in my life and it doesn't seem that my BP drops when I stand vs. that it is just always low. From the testing I had, sometimes it drops when I stand, sometimes it stays the same, and sometimes it slightly raises.

    My doctor (not my cardio who I don't see again until Nov) but my CFS doctor told me that he has never seen or heard of anyone getting sleepy & sedated from Midodrine so once again I am a freak of nature when it comes to med side effects LOL.

    Just thought I'd ask the PR universe to see if anyone else has experienced this but I think the answer is no!
     
  8. ahimsa

    ahimsa Sick since 1990

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    This is a complete shot in the dark (I have zero medical expertise) but here goes--

    Is it possible that the sleep is just your body trying to heal and it's not directly related to the midodrine? That is, perhaps the vasoconstrictive effect of the midodrine is somehow allowing your body to rest more easily and since your body needs to repair/recover then it is trying to get more sleep? After all you have been through one heck of a roller coaster ride lately. Maybe some short naps during the day would help?

    Just to share my own experience, midodrine has never made me feel either alert or sleepy during the day. However I did notice that after I started taking it my sleep during the night was better. My sleep is still nowhere near my pre-illness "normal" (and I doubt that will ever happen after 24 years of being ill). But right after I started midodrine I noticed that I woke up fewer times during the night and felt a bit more rested in the morning. If I push myself (too much standing, getting overheatead, and even sitting upright at the computer too long which is another NMH trigger) then my sleep gets bad again.

    I don't think my BP would get too high even lying flat (it has been fine when I've measured it) but I'm also somewhat careful about lying down while on midodrine. My solution is to rest in a recliner rather than lying down flat. But I've been taking midodrine since 2003 and I never feel sleepy during the day unless I have some sort of cold or flu virus.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    @ahimsa Thank you for your theory and I have zero medical expertise as well so we are perfect together. It is interesting to think that the vasoconstrictive effects of Midodrine could some how allow my body to rest more easily. What is weird to me is that often the Midodrine is so sedating that I literally have to lie down and I fall asleep immediately for 2-3 hours and even when I took sleeping pills, this never occurred.

    Prior to Midodrine, there were times I was very fatigued and tired during the day but would lie down to take a nap and be unable to fall asleep. It is the exact opposite now and very strange. I do sleep pretty well during the night except I have very vivid dreams that are exhausting and supposedly I move and talk a lot in my sleep (not get up, just toss & turn kind of moving.)

    I will be careful about lying down after taking Midodrine but my cardiologist in the hospital said that after two hours it is okay and my CFS doctor felt it was okay in general as long as my BP wasn't high which it isn't. But I agree it is better to be safe and I will be more mindful of this.
     
  10. ahimsa

    ahimsa Sick since 1990

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    Since you've actually had your BP measured by a doctor while on midodrine then maybe you don't need to be as careful as some of the rest of us? I guess we're all just a bit cautious since we don't want someone having high BP problems!

    I've measured my own BP while on midodrine after about 10 minutes of lying down and it was fine. But I've never had someone else measure my BP after several hours of lying down. So, that's one reason why I'm more careful. It's more of an unknown for me.

    Also, the situation really doesn't come up for me because I almost never want to (or need to) lie down completely flat during the day. The recliner works just fine for me.
    :D Thanks for a great LOL moment! :D
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @ahimsa Glad I could make you laugh!
     
  12. zzz

    zzz Senior Member

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    Somnolence is mentioned as a rare side effect that was noticed in the clinical trials for midodrine. You can find this information in the midodrine prescribing information. The most likely explanation for this effect is the same one I told you for the calming effect. When midodrine binds to the alpha(1) receptors, it causes a release of oxytocin, among other things. In small amounts, oxytocin produces the calming effect you commented on earlier. In larger amounts, it can put you to sleep. The continuing use of midodrine would appear to be raising the overall level of oxytocin in your body.
     
  13. SickOfSickness

    SickOfSickness Senior Member

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    I was told that measured BP doesn't matter, and a person still shouldn't lie down, because of pressure inside the head. (BP could be normal but pressure inside could be high?)

    After 2 hours I wouldn't worry.
     
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  14. PNR2008

    PNR2008 Senior Member

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    I was in bad shape when I started midodrine, always fatigued with BP 90/60 that if I didn't take the drug lying down, I wouldn't take it at all. In fact it is still hard to take midodrine 3 times a day at 2.5mg because I have to lie down the first half of the day.

    MIdodrine helped the BP numbers immediately but never went over 120/90 unless I was taken to the ER and upset. I even take Inderal twice a day. The only time I won't take the third midodrine is if I'm going to sleep for the night. I just figured this is my CFS/ME reaction to drugs because when I was put on it I couldn't even walk my BP was so low and eventually I'll have to increase the amount.

    I feel so much better on this drug because I'm not experiencing presyncopy but believe me I'm not cleaning the house and out shopping either. It helps me get to a doctors appointment but I crash as soon as I'm home.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    @zzz Thank you for the info and I know you had told me about the oxytocin but I didn't know it could make someone so sleepy! If the continued use of Midodrine (which I will be doing) appears to raise the overall level of oxytocin, is this something good, bad or neither?

    @SickOfSickness I did not realize that and have decided (and your post confirms it) that I will not lie down flat for at least two hours after taking Midodrine as I was originally told by my cardio and hospital. There were times after Midodrine (the lower dose) that I would lie down and BP still in the 80's/50's so I figured it was not a problem. Now with higher dose it is usually in the upper 90's over 60's.

    @PNR2008 I was started on Midodrine 2.5 but then raised to 5 mg 2x/day which helps me except most of the time is making me very sleepy/sedated. I don't think my BP is capable of going to 120/90 as this has never occurred in my entire life! Maybe it did many years ago when I was healthy and able to exercise but my sitting or standing BP has never reached that point and I wonder how I would feel if it did. Do you take Inderal 2x/day for POTS or tachycardia? I also never take Midodrine at night when going to sleep and the latest I will take it is around 5 pm.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Just wanted to give an update re: Midodrine. The last 15 days or so since I have increased the dose from 2.5 mg to 5.0 mg, not only has my BP dropped after taking it, but the level of sedation is like being drugged and I have to sleep for 3-4 hours. I literally cannot stay awake with the higher dose and it is like some kind of paradoxical reaction (is that the right term?)

    I asked my CFS doctor and he said to go back down to the lower dose 2.5 mg for a few days to see what happens. I am going to try it b/c with the lower dose, I felt calm but not drugged and was able to do errands and my systolic BP got as high as 106. Granted we had an old BP machine that I now question the accuracy of but it was consistently putting my systolic above 100 with the 2.5 Midodrine. We now have a new BP machine and the highest systolic reading I've gotten even with taking two doses of 5.0 mg Midodrine is still in the 90's.

    So I will see what happens with this new plan. I don't know why I have such weird reactions to meds that literally no one else seems to have!

    ETA- I wanted to add that I tried the lower dose 2.5 mg for my second dose today and not only did I not get the sedation but it raised my systolic BP to 106! It is back like before where it makes me feel calm and easier to breath but without the sedation. So the lower dose is definitely better for me.
     
    Last edited: Oct 25, 2014
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  17. zzz

    zzz Senior Member

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    It's the oxytocin.

    Oxytocin is a crucial hormone used for many functions throughout the body. One of the more widely known functions of oxytocin is social bonding, and related to this, it is a crucial hormone used in various aspects of sexual functioning. Oxytocin is what makes people feel calm after sex; it's also what makes some people fall asleep after sex.

    You're having the same effects, except that they're caused by midodrine instead of sex. This excess of oxytocin is not doing you any harm, other than making you sleepy. But when this sleepiness makes it difficult to function, that's a problem.

    So why is this happening? Why does midodrine work at lower doses and not higher doses for you? (Going back to 2.5 mg should raise your blood pressure back to where it was.) As I've mentioned before, midodrine is an alpha(1) noradrenergic receptor agonist. To understand what this means, consider alpha blockers. Alpha blockers are one class of drugs that are used to reduce hypertension, i.e., reduce blood pressure. Another name for an alpha blocker is an alpha receptor antagonist. Midodrine works on the same receptor, except instead of being an antagonist, it's an agonist of that receptor, which means that it has the opposite effect of an alpha blocker. That's why midodrine is used to raise blood pressure, while an alpha blocker is used to lower it.

    Specifically, since midodrine is a noradrenergic receptor agonist, that means that it acts like noradrenaline (more commonly known as norepinephrine in the U.S.) when it binds to that receptor. The stimulated receptor causes the nerve on which it's located to send signals to the muscles to which it's attached to contract. In the case of the alpha(1) receptor, these are smooth muscles, such as those surrounding blood vessels. When they contract, blood pressure rises.

    So far, so good. But when midodrine binds to the alpha(1) receptor, oxytocin is also released. Guess what oxytocin does to blood pressure? It lowers it. That's what you've been experiencing with the higher dose of midodrine. Basically, as you've been increasing your midodrine dose, the release of oxytocin has been increasing faster than the main muscle contracting effect of these receptors, and so you're experiencing a net blood pressure drop. What you'd ideally like to do is to find the dosage of midodrine at which the muscle contracting effect has the greatest difference from the hypotensive effect of oxytocin. This point is somewhere around 2.5 mg. It's not clear how much advantage you'd get by trying to refine the dosage; you may just want to stay at 2.5 mg.

    Why is this happening to you and not other people? As @Sushi mentioned a while ago, and as you can tell by the responses of various people in this forum, midodrine (like most drugs) has different effects on different people. For you, it appears that your alpha(1) receptors cause more oxytocin release when stimulated than most people's. That's also why one rare side effect of midodrine is somnolence, as I mentioned in another post. A different rare side effect of midodrine is insomnia. That is most easily explained by saying that the people who experience insomnia don't have enough oxytocin released when they're stimulated. Since these are excitatory receptors, without something like oxytocin to reverse their excitatory action, insomnia would naturally follow.

    What this comes down to is that it's possible to have your alpha(1) receptors cause either too little or too much oxytocin to be released, and yours are apparently causing too much. As for why that's happening, it's hard to say. It could be genetics, or it could just be another aspect of this disease that's related to hypersensitivity.

    In any case, this effect would apply to all alpha(1) receptor agonists, not just midodrine. So if you are to try a different medication to raise your blood pressure, it probably needs to be one with a different mechanism of action, or else you'll most likely get the same effect.
    Yes, you could probably call this a paradoxical reaction, since the midodrine is supposed to raise your blood pressure, and instead, higher doses are lowering it.
     
    Last edited: Oct 23, 2014
  18. Gingergrrl

    Gingergrrl Senior Member

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    @zzz I think we were typing at the exact same time. I didn't get to read everything that you wrote yet but added an "ETA" to my post that the 2.5 mg worked so much better! It raised my BP but did not give me the extreme sedation and put me to sleep. So now I have to go refill the lower dose at the pharmacy again but that is okay. I am just glad to have figured this out. I always do better with lower doses of meds and this is just another example!
     
    Last edited: Oct 22, 2014
  19. Gingergrrl

    Gingergrrl Senior Member

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    @zzz I just got a chance to read everything you wrote and it makes so much sense. I feel like I should be paying you a consultant fee per post or e-mail LOL. You have a brilliant scientific mind and you have helped me so much with so many different things and no doubt have helped many others on PR, too.

    My cardio had felt that the higher dose of 5 mg would work better for me so I tried it for over two weeks but my BP got lower after taking it, my shortness of breath continued, and my overall functioning worsened. My cardio is out of town and in my limited scientific knowledge (which is zip, zero & nada) I thought that maybe I needed to further increase the Midodrine.

    So I asked my CFS doctor and he said to actually lower it back down to 2.5 mg (but did not explain why.) I was confused but lowered it back down and saw my systolic BP go from the upper 80's to 106! I felt calm with less shortness of breath but also fully awake and was able to have one of my best friend's over for dinner tonight (which I would have had to cancel with the higher Midodrine b/c I would have been unable to stay awake!)

    I have several really important events coming up and was so afraid I was going to have to cancel them and now feel hopeful again that I will be able to attend.
     
    Last edited: Oct 25, 2014
  20. Gingergrrl

    Gingergrrl Senior Member

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    I wanted to post an update that although the 2.5 mg Midodrine is raising my BP to systolic of around 103-104 and diastolic in the 70's, which makes me feel better, now even the 2.5 is making me very sedated. At present, I do not have issues with sleep or insomnia but I did in the past and even when I was taking 2-3 different meds at a time for insomnia, absolutely nothing was ever as sedating to me as Midodrine!!! It is so weird and I am wondering if I am going to have to stop this medication? It is so frustrating.
     
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