Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Does Midodrine often raise only diastolic blood pressure?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Gingergrrl, Oct 6, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I am taking Midodrine and it is raising my diastolic BP to normal numbers (in the 70's) but it is not raising my systolic so I am getting a tiny pulse pressure between 18-20 every day. It helps my breathing and stamina but the last few days with the tiny pulse pressure, I have been feeling worse.

    Is this something that happens with Midodrine (that the higher the dose, it just raises the Diastolic pressure without the systolic?) If so, does it eventually normalize or is there anything that I can do for it? I went from 1.25 mg to 2.5 to 3.75 to now 5 mg over a slow taper upward.

    Thanks!
     
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  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hmmm a hard question. Does anyone know? I doubt we can give you an answer because it's about Dysautonomia:
    I don't see why a BP would normalize on a drug, it's not that you get 'used' to Midodrine and it has a very short half life so you won't build up a tolerance. As you know, it has a rapid effect after taking it, you get a little burst of activity, it burns out, and then you have the horrible side effects, well some do.

    Another way of thinking of this, is can your question actually ever be tested for? Our BP is so out of whack: (abnormal, normal, dangerously high, normal, low, high) then we get normal pulse pressure (differences between systolic and dystolic), then too wide, then narrow and then normal again.

    Add on top of this another variable when you took your own BP:

    Seated, calm, exertion, post exertion, post prandial (food), morning (most dehydrated), weather (heat or lack of) and other variable dilatory factors (after a shower/bath), or constriction (stress). Then add other meds on too. It's just massively complex in my view to be able to give you an answer as patients on Midodrine.

    Unless....we can ask an expert (do they exist?) in autonomic blood pressure findings, do we get now just wide, narrow pulse pressure but your specific finding as part of the pathogenesis, and then find out if this is Midodrine related.

    Unless these answers are on the package insert of the drug,

    Otherwise I doubt you'll find an answer unless you've cleverly found a phenomena in most people on Midodrine, rather than a unique phenomena.

    Why not start simple and if you can, ask your cardiologist or the person who prescribed you the medication why you get no rise in systolic, post administration of the BP raising medication.

    Failing that one idea might be to research a condition (might not be midodrine related) that causes the finding to occur and see if there is name for it. Maybe you have 'that', and thus you can then see if it correlates with taking the medication.
     
    Last edited: Oct 6, 2015
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @Research 1st Thanks for your detailed reply and I figured there was no easy answer! I am feeling extremely nauseous from the increased dose too (or from something else?) so may lower it back down to 3.75. It's just annoying b/c the pills don't cut so I lose 1/2 a pill every time I cut it so thought if I could tolerate the 5 mg, it would help in this regard, too. Am trying to only make one med change at a time and thought this might be an easy one but so far, I like the 3.75 mg better than the 5 mg. My BP is always low but normally the PP is between 25-30 (not 18-20) so I got concerned but maybe it is nothing to worry about with dysautonomia since nothing is ever normal anyway! Thanks again!
     
  4. Sushi

    Sushi Moderation Resource Albuquerque

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    Could you crush them rather than cut them and then divide up the doses?
     
  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi, No probs.

    Sushi has a good idea there, but the tablets are super powdery if you break them with your fingers even. Still there's probably little other option. Can you get a smaller size tablet? Also I'm a bit worried about if it's safe to breathe the tablet in if there's going to be powder around. As you know, if the tablets get a tiny bit of water on, they disintegrate, so I don't even think we could store them unless was in an air tight container (moisture would wreck the tablet powder).

    If you have low BP, I know it's easier said than done but try and get some of these tests done by an expert in autonomic dysfunction to see if you have low blood volume:

    Adrenaline/Cortisol
    ADH/Vasopressin
    Sodium 24hr urine
    Aldosterone/Renin ratio
    Aldosterone 24hr urine

    Basics before all that in low BP:

    Keep a record of how much you drink and pee.
    Measure your BMI measurement, check cardioechogram and iron status is normal.
    Try and get a 24hr BP monitor off the doctor if you haven't had one.

    The holy grail test would be a radionucleotide injection and popping under a scanner to have a plasma volume/red cell mass assessment.

    http://my.clevelandclinic.org/servi...-testing/nuclear-imaging/blood-volume-testing

    But....other than the 'drugs' (which all have side effects), we can't fix this in ME. :( I mean you could technically have an IV saline drip every day but your veins would collapse and you don't want to start having IV's in your feet.

    Lets hope our problems are caused by a reversible autoimmune disease.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I'm not sure if they are time released in any way and when you cut them, you get one good half and one that literally disintegrates into powder.

    I wanted to try increasing the dose to 5 mg since this is what was prescribed and I do find some benefits to it but it is incredibly sedating and possibly making me nauseous besides the weird low PP.

    Am thinking of doing first dose at 5 mg and second dose lower and at some point will have to see the cardio who actually prescribed them to me.
     
  7. Sushi

    Sushi Moderation Resource Albuquerque

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    You could ask your pharmacy if the type you are getting is time released.
     
  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I would call and ask the doctor.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Thanks to everyone and I appreciate all the info & feedback.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I'm pretty sure in retrospect that it is not time release since every doc has told me it is okay to cut them and they have no coating. But I will verify this and thinking of asking my original cardio who prescribed them.
     
  11. ahimsa

    ahimsa Rarely on PR now

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    I don't have an answer to the original question about midodrine and blood pressure. I've been taking it since 2003 and not had any bad side effects.

    But I thought I'd comment on the issue of cutting midodrine tablets. There are different kinds of pills depending on the manufacturer

    I've had my prescription filled from two different manufacturers (maybe more, I can't remember!). I don't know any of the manufacturer names but here's what I know from memory.

    Sometimes I get orange tablets which are flatter and are pretty easy to break in half with my fingers. I don't even need a tablet cutter. Then there are white ones which are thicker, and very crumbly. I've never even tried to cut these but I imagine it wouldn't work well. These dissolve on the tongue quicker, too, so I need to drink the water quickly to avoid that.

    I'm sure there are more colors/shapes from other manufacturers. Websites like rxlist.com or drugs.com usually have images of pills but I'm not sure how to tell which manufacturers are still in business.

    I agree with what @Gingergrrl said. All the forms that I have used are not time released and there's no problem with dividing them in half.

    EDIT - I looked at my current prescription (fatter, white tablets, hard to cut in half) and they are made by Mylan. Here's a photo:

    http://www.drugs.com/imprints/m-mh-2-12212.html

    I think these orange ones (easy to break in half) may be the ones I got in my last refill:

    http://www.drugs.com/imprints/e-43-11269.html

    Or it could be these pills made by Global (that name sounds more familiar than Sandoz)

    http://www.drugs.com/imprints/g-422-12322.html
     
    Last edited: Oct 7, 2015
  12. ahimsa

    ahimsa Rarely on PR now

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    Oh, I did have a thought about midodrine and nausea. I don't recall any problem with my diastolic pressure rising and not my systolic pressure. But I did have a brief problem with nausea.

    When it was first prescribed the doctor gave me instructions to take one 5 mg tablet twice a day. Since midodrine only lasts for about 4 hours (give or take) my morning dose was wearing off just when I needed it most, after lunchtime on a full stomach. I was having trouble with nausea because I was losing the support of the midodrine just when I needed it most. I felt like taking midodrine twice a day was worse than not taking it at all because the feeling of it wearing off while I was trying to be up and about was so horrible.

    I changed to taking it 3 times a day and that helped me a lot. Now I try to take it 4 times a day (approx 3.5 hours apart) on most days. But if I get up late, or I need to lie down, or anything like that, then I skip one or more doses. The purpose of midodrine is to help me tolerate being upright. So if I'm in bed with a migraine or a flu then I don't take it (plus it's not supposed to be taken while lying down, or too close to bedtime, due to risks of raising the blood pressure too much).

    This may be a bit rambling but I hope it makes sense.

    PS. Unlike fludrocortisone, where I started small and built up, I never tapered my midodrine dose. I started at 5 mg tablets.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @ahimsa and everyone else who responded. The 5 mg Midodrine is making so incredibly sedated and nauseous that I cannot continue with it and going back down to the 3.75 mg. It is the most sedating med I have ever taken in my entire life which says a lot (more than Benadryl or a sleeping pill!)

    My cardio confirmed it is fine to cut or crush them so no issue there. I can only take the white Mylan version b/c I am very allergic to food dyes.

    Thanks again!
     
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  14. ahimsa

    ahimsa Rarely on PR now

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    Oh, yes! I had forgotten all about your scary reaction to dyes. You definitely don't want to mess with them.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    For whatever reason the 5 mg Mylan version even cut in half does not agree with me and giving me bad side effects and no benefit so am going back to the 2.5 version (but still taking higher dose.) The bigger pill must have a different ingredient or filler in it. So much trial and error (more error in my my case!...)
     
  16. DeGenesis

    DeGenesis Senior Member

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    This is only a thought of mine and I don't really fully understand the mechanisms at play here, but if you have low blood volume I imagine that increasing peripheral vasoconstriction will not raise your systolic blood pressure as much since that extra vasoconstriction is not pulling significantly more blood to the heart. I mean to test my unprofessional hypothesis by combining a stimulant or midodrine, Florinef, and a beta-blocker. So far I have only had the chance to test them in isolation.
     
  17. halcyon

    halcyon Senior Member

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    What does your BP run unmedicated? Seems kind of dangerous to combine midodrine and florinef though I'm sure those with low BP can probably handle it.
     
  18. DeGenesis

    DeGenesis Senior Member

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    120/90. I'm definitely not recommending that combination, it's just something that's been floating around my head. The increased BP from Florinef was enough to put a large dent in OI once in the past, but eventually I got a back-of-the-head-ache when lying flat, which I took to be a potential sign of intracranial hypertension. I'd like to try the drug again at a smaller dose.

    Ideally I'd like to:

    - increase blood volume with Florinef
    - lower HR with a beta-blocker, and potentially lower BP if Florinef takes it too high
    - increase peripheral vasoconstriction with midodrine or another stimulant

    Florinef increases peripheral alpha-receptor sensitivity, causing vasoconstriction, which may make the addition of midodrine unnecessary.

    Really though I spend too much time dreaming about this treatment and that. If I had access to all pharmaceuticals I would still (or at least try to) test one drug at a time.
     
  19. ahimsa

    ahimsa Rarely on PR now

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    I've been on midodrine and Florinef (fludrocortisone) since 2003. Maybe I'm just lucky but I've had no problems. My cardiologist said that some OI patients do better with this combination of meds.

    I've had my BP measured in the afternoon after having my morning dose of Florinef, a couple doses midodrine, a cup of coffee, and 2 salt tablets with lunch. It's still only 110/70.

    I only take 1/2 tablet (0.05 mg) of Florinef daily. As I said earlier on this thread, I generally take 5 mg of midodrine either 3 or 4 times a day.

    For what it's worth, the diagnosis from my tilt table test is NMH (Neurally Mediated Hypotension) and not POTS. But I seem to have developed more POTS over the last few years.

    My heart rate can now easily get to 140-150 when I stand still just long enough to take my blood pressure. I was testing my BP while standing and was surprised to see how high my heart rate got just during that 1-2 minute period waiting for the BP machine to finish.
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    I am no longer having the problem from Midodrine that I posted when I started this thread. For whatever reason, I did not tolerate the 5 mg dose (even cut in half and it must have had different fillers.) I currently am taking 3.75 mg of Midodrine 2x/day and occasionally 3x/day (made from 1.5 of the smaller dose pills) and it is working great.

    My BP right now (last dose of Midodrine was 5-6 hrs ago) is 102/71 which is an absolutely phenomenal BP for me. Prior to re-starting Midodrine and some other treatments I am currently doing, my BP with no meds was around 80/50. I tried Florinef for three months in the summer of 2014 and it did not agree with me at all-- did not raise my BP and gave me horrific headaches and in general just felt awful. Just goes to show how different we all are!
     
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