"Suffering the Slings and Arrows of Outrageous Fortune"

Midodrine

The cardiologist prescribed Midodrine for Em when we saw him a couple weeks ago. It was really a choice between Midodrine and Florinef  – Florinef is usually the first choice to try but Midodrine has more evidence of good out comes. He mentioned that Midodrine is more complicated to take – that you have to take it 3 or 4 times a day, while Florinef is just taken once a day. (I should have listened!)

My thought was, she already takes meds 4 times a day, so it wouldn’t be a big deal to add in one more and if it is going to work better, let’s skip the one that might not.

Silly me. It is slightly more complicated than just taking it 3 or 4 times a day… It doesn’t remotely line up with her meds schedule and it is a pain.  It can’t be taken if you are lying down or will be in like 4 or so hours because it can cause supine hypertension. (If she needed to take a nap, or just needed to lie down and rest, it could cause a problem.)

Em’s first meds are taken in the morning and she lays back down and sleeps for a while. (If we are being honest here, she still struggles with her sleep schedule and falls asleep around 2 am and gets up around 12 or 1 pm, depending on how late she was awake. She really has to have 12 hours of sleep most of the time to function, so it is a frustrating thing, to say the least.)

So, she has to be awake and up before she can take the Midodrine BUT she can’t take it after 5 pm because of the supine hypertension issue. Obviously, taking 4 doses between 12 pm and 5 pm is not going to happen. We have been adding doses in slowly – started off with just 1 for a week or so until we saw how she reacted, then added the second dose. Some days we are able to get the 3rd dose in but it is a challenge – it requires her to be up earlier than 12, then she can take a dose around 3 and again at 6. (I figure it isn’t going to kill her since she won’t be falling asleep until more than six hours afterwards.)

AND after all of that thought and effort and juggling, the Midodrine does absolutely nothing. It actually makes her feel worse – worsens her headache, she feels more lightheaded and dizzy. The point of the med is to raise her blood pressure – it is supposed to constrict her blood vessels, thus making it easier for the blood to be pumped around the body. For all of the worry about the hypertension thing and the fact that it is supposed to raise her BP, it seems to be doing exactly the opposite. Which explains why she feels worse.

We are actually supposed to check her BP periodically as we start this med, which is why I know that it is actually lower than it was to begin with. Not dangerously low but certainly low enough to make her feel rotten – her typical is 115/70 and it is running 99/55 now after she takes the med. (When it is out of her system, her BP is back up to normal.) She has been taking it for a couple weeks now and there are no positive effects at all, just negatives. The negatives are not deal breakers at the moment, but it is frustrating that this awesome med is doing nothing.

She is supposed to try it for a couple months, until we go back to the doctor. We will give the 3rd dose a valid try for some realistic length of time but keep an eye on her BP in the meantime. I certainly think we don’t need to knock ourselves out to add in the 4th dose – which was optional anyway. Maybe it will be more helpful as time goes by, but I rather doubt it.

I know that there are no easy answers but it would have been so nice to have a med that worked and improved her energy level and helped her symptoms. Not meant to be this time, I guess and I just need to be a little patient as we travel down this road.

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Comments on: "Midodrine" (10)

  1. So sorry to hear about these struggles. Our lives and medications are SUCH a juggle. Since I “donated my body to science while still occupying it”, I used myself as a guinea pig (don’t try this at home!). ha. Hon, can you email me directly to have a brief chat? Thanks so much, Diana

  2. Give it a week. It took 4 days on Florinef and it helped my daughter 80 percent.

    • I know a lot of people are helped significantly by these meds. I just don’t know that my daughter will be one of them! She had been on Midodrine for more than a week when I posted – and even after almost a month, she is still not seeing benefits from it. The doctor wanted us to give it a good trial, so I don’t mind working with it until we go back, but we are definitely not seeing any benefits yet. Florinef might be an option when we go back to the doc in July.

      Thanks for commenting!

  3. So sorry the Midodrine isn’t working out! I take both Florinef and Midodrine, thankfully both work well for me. The Midodrine does cause scalp tingles as I was warned it would, but I have no ill effects beside that. I tested the supine hypotension possibility by checking my BP & HR as I slowly reclined bit by bit and it remained fine thankfully which makes it a bit easier with times I take it and not worrying if I need a nap. That may have something to do with my normal BP sitting around roughly the 70s/50s though, by taking both Midodrine & Florinef its bumped up to being around normal, though there’s still times I feel foul. I can skip the Midodrine at times and be ok, but the Florinef I really notice if I miss or am late taking it, it helps so much. The only unwanted side effect I’ve had from it is small breakouts of pimples every so often, but nothing bad enough to complain about really.

    Just a thought, have you tried compressing stockings? Not the most comfortable I know, but as her BP isn’t super low the stockings may be just enough to keep her from having to take more meds. May be worth seeing what her cardiologist thinks. It doesn’t mean horrid, fashion killing, pale white legs, you can get some funky patterned ones from companies like Juzo, Rejuvahealth and a few others and they can really help with stopping fluid build up, better circulation, stop blood pooling and all in all, raising BP.

    Good luck! Feel free to email me personally if you have any questions about my experiences with the meds and Dysautonomia journey or the stockings.

    Regards,
    Jess

    • Thanks Jess!

      We are just plugging along with the Midodrine, until we go back to see the doc in July. I am not surprised that Em has an odd reaction to a med, that is pretty normal for her. It just doesn’t seem to do much to help and often makes her feel worse…

      We have talked about compression stockings – the doctor brought them up, but told us honestly that he didn’t think they would do much for her. Honestly, the orthostatic intolerance and tachycardia and near syncope are just her normal. What really causes her problems is the heat intolerance, the Reynauds symptoms, the food intolerances that trigger all of the symptoms – stuff the meds won’t do much for anyway.

      I think, if I am right about the autonomic symptoms originating from MCAS and that they are not just plain old ‘POTS’, the normal treatment approach won’t do her much good. I don’t know if the doctor will come around to that conclusion with me, but I don’t mind playing around with meds until we figure it all out.

      Anyway, thanks for commenting and sharing your experiences with Midodrine and dysautonomia!

  4. Julie said:

    Is she on a beta blocker for her tachycardia? I was having unbelievable tachy, mostly at night on my multiple trips to the bathroom. It makes you so weak. My doc put me on Pindolol, titrating the dose slowly from 1/4 pill and increasing it by 1/4 every 3 to 5 days. It has done wonders for my tachy, even while I’m laying down. It’s a partial beta blocker so it keeps your HR in a stable range vs. Indural (propranolol). It has done wonders for my tachy. It initially dropped my bp and hr, but my body has slowly (within weeks) adapted. I’ve heard that your autonomic system actually initially fights back when a new medication is adopted, but with the right medication will finally give up some control. The Florinef can be taken with the Pindolol, to keep the bp higher and it can also help decrease the constant need to empty the bladder. Desmopressin might be a good medication to research, it can help retain water, as well. Baclofen can also help with pain and help her go to sleep at night, and it does not seem to develop tolerances like other medications can. I also take Ambien to go to sleep at night which is so nice to not have to lay and bed and think. Some people cringe with Ambien but the same dose has worked very well for me for several years. I still need 12 hrs. of sleep to function properly.

    There is a new medication, well, not new but new to the public. Researchers have been using it for years and Japan has used it for the public for years, as well. It’s call Droxidopa. Used for orthostatic intolerance. It’s significant because it crosses the blood-brain-barrier and can increase vasoconstriction without increasing supine bp. Chelsea Therapeutics just resubmitted another application to the FDA mid-July. It’s an alternative to Midodrine and I think will be very helpful for us EDSers. It also helps with the brain-fog. I wouldn’t be surprised if we have to take a lower dose than normal but I’m very excited about this drug. If FDA approves it might be available the first quarter of 2014. The FDA has put an expedited label on it because of how beneficial this medication can be for a lot of people with autonomic dysfunction (Parkinson’s disease and all types of autonomic disorders). It is the primary medication used to treat the Dopamine Beta Deficiency autonomic disorder (spelling is probably wrong but it’s something like that). Vanderbilt has this autonomic disorder described on their website. Best of luck to you. I see a specialist in MS who treats Fibromyalgia and understands that it is an autonomic disorder and theorizes that we also have a dopamine deficiency in the brain. I’m going to present The Driscoll Theory to him at my next appointment, because my pain is in my neck and spine, which this theory explains. Hope you find this information helpful. Thanks for your website.

    Julie

    • No, she is not on beta blockers at this time. The Midodrine actually kicked in after a couple weeks and has helped A LOT! It has been pretty amazing, actually. The cardiologist talked about florinef as one possible med but basically said that Midodrine tends to work best. So, for now we will stick with the Midodrine and wait and see. The doctor did say that he has several meds he can try but if she ever needs more that he will send her on to autonomic experts. I sort of assume that means Dr. Grubb since he is also in Ohio, but who knows. The Midodrine is a pain in the butt, but it is working really well right now so we won’t complain!

      Thanks so much for commenting and sharing info about the various meds. It may help my daughter at some point, but it also may help anyone who ends up reading your comment and that is a great thing!

      Thanks again!

      Beth

      (Ps – I am responding to your other comment about Diamox and neck pain, so please look for that response!)

  5. Hi Beth, I notice Midrodine had started to help your daughter a year ago. Is it still working?

    • Hi,
      Sorry it took me so long to reply! I guess it has been a year Em has been on the Midodrine… Yeah, I think it is still working. It certainly is not a cure for her, but it does help her be more active. I think it is probably one of those things that she would really notice it if she stopped taking it…

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