Midodrine

[tonyad]

  Hello Friends :)

   do any of you take midodrine or are you familiar w/ it?

Could it work for NCS?  All info much appreciated...

~Tonya

[Fellowpatient513]

My most recent regiment for the last 6 months is Midodrine-5mg TID, Zebeta-5mg BID, and Flurdicortisone-0.1mg once a day...this is a round the clock regiment.  I am 31 years old and have lived with this condition since I was 7.  For the past 6 months I have felt better than I have in years and have no episodes that have caused loss of consciousness or so weak and lightheaded that I needed to spend the rest of the day lying down.  I am able to go through my daily life of school, running my household, and outdoor activities with a basicly normal energy level and stamina.  Just need to make sure that I am hydrated (this is VERY important for people with our condition) and just slow down a bit when you feel like symptoms are starting...even just a little.  The worst thing I have found that can be done is to try to "push" yourself through your symptoms.  The more you push your body during an episode the worse its gonna get (granted I have learned this not just from the doctor...but multiple episodes of being too bullheaded to actually stop and let the episode pass).

[ABarton72]

I take florinef .2, 1x/day and midodrine 10, 4x/day I had supine hypertension the first time I took a nap with it, but now I nap and go to bed with it in my system with no negative effect.  My blood pressure has increased but I am still fainting... More tests to follow...  Andrea

[maddiesmoo]

Hi, i just started this medication 2 wks ago, and thank god i feel like a human being again. i thought i just had low bp and low blood sugar. it really is helping

[globalhiking]

Thank you for your opinion and information :-)

I will check this one out.

Hopefully they sell this model in the UK.

Thanks again.

[AMO]

thank youvery much explaination!
I knew something was causing error message on my cuff, but not sure what. And this makes such sence. This happens very often, always in standing. In the manual says 1) movement , or 2) No pulse or blood pressure reading  due to very weak artey pulse (humm)

I am rememebring one time at a  dr clinic actually seated and the cuff they used was automaticand could not get a reading.... the gal scratched her head and said that never happened before. I told herr happens all the time for me. I don't think she believed me:)

I havee  three  cuffs....the first two i thought were not acccurate LOL
But i do want one having the irregular beat and to put on computer . I'll have to have a garge sale, ha!
thanks again, amo

[Heiferly]

It's likely that having readings from long naps or prolonged daytime bedrest is close enough to overnight readings to rule out supine hypertension as a side effect.  Amo is correct that there are circadian fluctuations in BP, but you would actually expect to see the low point of your 24 hour cycle while you're asleep at night (with the high point while you're awake in late morning/early afternoon), so I don't think this is of concern in this particular scenario.  

The cuff I use is one that I know several doctors have used at home themselves and recommend, and has compared favorably to the HR readings I get from hospital telemetry and their BP measurements.  It is manufactured by Omron and is this model:  

http://www.amazon.com/Omron-HEM-780-HEM-780N3-Automatic-Pressure/dp/B0009XQUES

They make the same model but with the ability to sync data up to your computer for analysis (PC only; not available for Mac or Linux):

http://www.amazon.com/Omron-HEM-780-HEM-780N3-Automatic-Pressure/dp/B0009XQUES

I have found one shortcoming with this cuff, which is that it will bring up an error (and not take a reading) if you take your BP while your blood pressure is very rapidly changing at that moment; this mostly applies to patients with NCS/POTS/OH who may have sudden, *rapid* drops in systolic, diastolic, or both pressures when trying to take a standing BP.  The rapidly dropping pressure "confuses" the machine for whatever reason and it will fail to take a reading until pressure stabilizes somewhat.  At first I thought it was just failing to take readings at low values, but I spoke with the manufacturer and they assured me it is tested and accurate to quite low levels for both systolic and diastolic.  I don't have the numbers handy right now, but I remember thinking they were PLENTY low.  As it turns out, the issue is with whether the pressure is changing rapidly at the time; I just was in the habit of "giving up" and sitting down before mine got low enough to stabilize and get a standing reading because this would often put me too dangerously close to a faint.  In short, the machine works well, but it may be quite tricky to get a reading during an impending syncope due to the nature of the phenomenon itself and the limitations of the electronic machines.

I hope if you get that one it works as well for you as it has for me.  If not, errr ... look, it's Elvis!  **runs away**  :-p

[AMO]

hi global hiking,

some thing i may be way off, naps vs. night....youur  bbody during 24 hr has  ddifferent  cycle (endocrine system maybe??) and  could be very different readings.... i may be vary wrong, (so someone pipe in please) but i just think when doing cortisol (??) blood work and going in certain hour of the morning.
i know people put things to raise the head of their beds

and  I am with you, I am at mmy  worse in the morning and when my speech iss   at itss worse.
catch 22... have mycoffee to get blood vessles dialated, but diuretic effect can lower flluid volume, and i am incontienent then go through many clothes...ggrrrr

i hope tonya did well during mri lying down

take  care, amo

[globalhiking]

Thank you for your comment, and no I'm not taking your capital letters as shouting :-)

My husband has often taken my BP in the middle of very long naps, or many times a day when I don't feel too well, and have been lying down most of the day. The highest reading I got is 118/54.

So my hope is that it would still be the same overnight. I don't see why not. Do you think there could be a difference between long naps in the afternoon, and sleeping at night?

When I say that my husband is taking my BP, I mean he is using a cuff and stethoscope. I have not been able to find a BP machine that is able to read my BP properly. I always get widely divergent numbers; the machine always read my BP way higher, and since my husband's technique is spotless, I go for the manual BP. I have tried 3 machines so far, spanning a wide price range, but no luck.
Which brand do you use? Any suggestions?

[LivingInHope]

How you doing with midodrine?  I don't have NCS, but POTS, and I didn't tolerate midodrine well myself- seemed to have a lot more chest pains with it.  Hope you are fairing better than I did!

[Heiferly]

Not to disagree with you whatsoever, but just to clarify, you'll only know if you're susceptible to the supine hypertension if you get it as a side effect while lying down overnight WHILE UNDER THE EFFECTS OF THE MIDODRINE.  (Sorry, I **really** hate to use caps online for emphasis but MedHelp doesn't support html markup so I can't italicize for emphasis as I'd like to; I know netiquette dictates that all caps reads as shouting and just looking at that grates on my nerves.  Please accept my apology and take that as italics for emphasis, not me shouting it, LOL.)  If you do get to try out round-the-clock dosing, perhaps you can have your husband check your BP in the middle of the night a few times with your home monitor just to make sure that you're not getting supine hypertension from the overnight midodrine.  He won't mind being up in the middle of the night for you, right?  :-p

[globalhiking]

Thank you very much for your reply :-)    Really appreciated.

I think I will suggest Midodrine around the clock to my Cardiologist.

Mornings are horrible; I don't feel human until 1pm, which is 2 hours after my 2nd dose.

My BP has always been naturally very low 95-100/50-54; so supine hypertention is not a problem.

Anyway, I have my own ambulatory BP monitoring system; it's my husband :-)

[Heiferly]

tonya,

Definitely PM me on your other meds.  I can help you double-check for interactions if you want.  I've gotten pretty savvy at it from double-checking my own meds (my list hovers in the low 20s at any given point in time, so I do a lot of checking).

Crossing fingers for you too!!
-H.

[tonyad]

   Thank you so much for the thoughts.....I will certainly let you all know
how it works......Crossing fingers, toes, and legs!  Lol

~tonya

[AMO]

i am   happy     you have   medicine noow for youur syncope. i hope it does work, please let me know.
good luck for youuu new mri.
take care, amo

[tonyad]

  Hey there :)

  My Cardio ddid approve the Midrodine today and wrote the script. I got it filled today and will start it tomorrow. She rx'ed 5mg TID....Then in couple of weekspplans on upping the dose.

   She doe not want me to take it at least 4 hours before bed until we see how it will affectme in supine position......please EVERYONE keep your fingers and toes crossed that this med will work for me!  I am on NO meds now for the NCS and my quality of life is terrible on top of having the MS!

    I too "H" am on so many meds, I feel like a walking pharmacy / pill box!...Lol   this is not good coming from someone who used to NEVER even take a tylenol for a headache but rather massaged the head and used tiger's Balm!

    I have an MRI scheduled for tomorrow (routine for follow up on lesion load in brain for the MS.  I will start the med after the MRI.
I sure hope that w/ all my meds, I have no contraindications w/ it.
i use the same Pharmacy, so I would hOPE that they would say otherwise......

    Thanks Again Heiferly :)  
And, I probably will PM you tomorrow on my other meds...if you don't mind...Lol

~Tonya

[Heiferly]

I definitely recommend that book.  He also has a textbook that's not meant for laymen and more riddled with medical jargon, but worth slogging through if you can get your hands on it.  It's expensivo, so I definitely recommend getting it through the library (interlibrary loan can probably request it for you) rather than buying it, unless you decide you *really* like it.  But the one I quoted above is meant for laymen and is quite affordable.

Yes, I take fludrocortisone also.  And quite the assortment of other meds as well, for various reasons.  If you want the full list, let me know and I'll PM it to you.  I think I'm at 0.1 mg of fludrocortisone currently ... I've tried higher twice but always end up lowering back down because I can't tolerate 0.2 mg for some reason.  I know other people have done well on higher doses though, and some people can only tolerate 0.05 so I guess it just varies.  My daily goal is 4 L of fluids and 5000 mg of sodium to work with the fludro.  I'm almost always at or above goal on the fluids; I'll admit I'm not always on par with the salt, but I'm trying to get better at it.  

[Heiferly]

I take my midodrine *exactly* every 6 hours, at the following times:

noon, 6 PM, midnight, and 6 AM.  As we're a "second shift" household, my schedule for sleep/wake/meals is a bit off from most others, so the noon dose is shortly after breakfast, the 6 PM dose is during lunch, the midnight dose is roughly around dinner time, and the 6 AM dose is the no-fun dose.  

With a 6-hour dosing schedule, unless you sleep for 6 or less hours/night, one of the doses requires setting an alarm and waking in the middle of the night to take it; that's the 6AM for me.  It works out fine, because I'm also on 24-hour dosing for zofran (every 8 hours) and although the laws of time and space are such that only one of those doses can align with my midodrine each day, I set it up so that it's at 6 AM where the two coincide so I fumble at the bedside only once per night.  :-D  

What's great about this for me is that it has enabled me to get up and use the restroom in the middle of the night (which isn't really optional considering all the fluid loading) without having to crawl there on my hands and knees to maintain consciousness because my midodrine has worn off.  Plus, there's much less suffering getting out of bed in the morning; there's still SOME circadian cycle of the BP which causes lower AM blood pressure but nothing like the misery that would be having my midodrine go AWOL overnight and waiting for a fresh dose to kick in every morning.  

I'm SO glad my docs were willing to approve this.  (It was actually *after* the fact of getting on round-the-clock midodrine that my suitability for this was confirmed by the results of my radionuclide hemodynamic testing which shows how blood is pooling in the body in supine and upright positions.)  

One way that they can confirm that you're not getting supine hypertension on it is to check what your BPs are/were during a hospital stay because for some reason, despite all the hoopla about not taking midodrine overnight because of possible supine hypertension, this generally gets overlooked when we are hospitalized and we end up flat in a hospital bed still being dosed up with midodrine (albeit during daytime).  If they go through your chart from a hospitalization, they should be able to see if your BPs (and gosh knows they come through to check it seemingly incessantly) were okay even while you were supine on the midodrine, and that should be proof positive to a cardiologist that you don't suffer supine hypotension side effects from midodrine.  If you're fortunate enough not to have been hospitalized ... you may have to have your BP recorded over some period of time while you're supine to confirm this ... maybe with ambulatory BP monitoring (similar to holter monitor but for blood pressure).

[tonyad]

   Heiferly,
      I am also going to look into getting that book.  It sounds like it is worth the read!
Do you also take the Florinef along w/ the midodrine?

     ~Tonya

[tonyad]

   Thank you so much for the GREAT info!  you all are so good!
OK, So I have an appt. w/ zcardio tomorrow (Wednesday) afternoon.  I am going to talk w/ her about this med and perhaps rx'ing it to me!

    I have had a very bad last couple weeks w/ both Near Syncope as well as Syncope...Really ***** to feel so yukky all the time!  plus w/ my situation....when I do pass out or have near syncope, it stresses my body and give many of my MS symptoms a wake up call to come out and make me feel even worse!

     i will let you all know what the Cardio says after my appt. tomorrow.
Yhanks again.

~Tonya
  

[globalhiking]

Hi there, I'm curious about you taking Midodrine around the clock.

Would you mind telling me how much, how often, and at what time :-)

I thought about suggesting that to my cardiologist, as I do not suffer from supine hypertention, and my mornings are always so rough since I take my last dose at 1600 and by 0700 there is no MIdodrine left in my system.

[globalhiking]

Hi Tonyad,

I have been on Midodrine since I was diagnosed with POTS last October. I take 10mg 3x day. It has generally helped decrease my HR by about 20bpm;  from the 150's/160's down to the 130's/140's. It is quite an improvement, but not enough to go back to a normal life.
Sadly the improvements are mostly in the afternoon, as Midodrine has a short half life.
Every morning I need to start anew; I don't feel better until I have 2 doses in, and at least 2 liters of fluid.

Since my BP was quite low to start with, I have not suffered any supine hypertention.

The only side-effect I have is a strange sensation on my skin/scalp, a bit like chills.

As for its use NCS, I think Heiferly has given you good info.

Hope this help :-)

[Heiferly]

Straight from the layman's "bible" on fainting, _The Fainting Phenomenon:  Understanding Why People Faint and What to Do About It_ by Dr. Blair Grubb, "Midodrine is the only drug approved by the US Food and Drug Administration for the treatment of orthostatic hypotension.  It is also used to treat neurocardiogenic syncope and POTS" (p. 99).  He further goes on to say that "Research has also shown that midodrine is effective in people suffering from neurocardiogenic syncope and POTS.  In one study (Ward et al., 1998), researchers found that midodrine reduced symptoms of neurocardiogenic syncope and improved the participants' quality of life" (p.100).

So, the expert answer here is an emphatic yes, it can work for NCS.

My personal answer is that I take midodrine and that the reason that I stayed on it when they first put me on it is that I did have a decrease in symptoms (though obviously not complete symptom resolution) when I started taking it.  Even now that my illness has gotten worse, because of the short-acting nature of this medication, it is very obvious when I miss a dose of midodrine.  It has a clear effect on my BP and symptoms and I am not well without it; that's a gross understatement, LOL.  I'm one of the few people on this forum who are on round-the-clock dosing of midodrine, meaning that I take it during the night as well as during the day.  This is counter to the boxed warnings for supine hypertension that come in the drug's literature, and not all physicians are willing to even try this; however, there are a small group of patients who can and do benefit from round-the-clock dosing and do not get supine hypertension as a side effect.  I say all that not to say that more people should be on that dosing schedule, but to say that THAT is how much I rely on midodrine to keep my symptoms in check.  It's integral to my treatment and I would definitely recommend giving it a shot if you haven't already.  Not everyone tolerates it or even feels they get benefit from it, but you won't know if you don't try.  Okay, that's my two cents (actual value may vary).  ;-)