Need to pick a brain...

[Jenn0030]

I have NCS and was started on midodrine several months ago which did seem to help improve the near syncope for the time around I started taking the med.  I take it three times a day and feel okay during the day when I am work and trying to function, but I take classes in the eveing starting at 6:30.  Most eveings when I get home from work if I even sit on the couch, without even trying I am out cold.  My BP is really low as well as my pulse.  Now I know that I am not focusing as well as I should during my classes in the evening.  Any advice??  My doc said to stop the midodrine at 6pm.  I usually crash at about 7.

Thanks Jenn

[AireScottie]

Yeah, I was asking about that because it finally occurred to me why I don't have trouble with the stockings.  I played bass for years (the big one, not electric), so I have really strong hands and arms.  Even though I can't play any more, I think they're still stronger than most women's.  So, if you can handle any exercise, you might find it helpful to get one of those squeezy grip hand exercizers and some kind of arm exercizes like push ups and forearm curls.  Over time, it might help pulling them on.  Or not.  It's hard to say...

[Heiferly]

You're not kidding about how hard it can be to get the stockings on and off, especially if you have problems with strength!  I wish I had some sage advice to give, but I have someone help me with mine.  

[Heiferly]

Sorry, I hope it didn't seem like I was questioning why you've been prescribed beta blockers.  Considering your history of MI, it makes perfect sense and treating your dysautonomia may just have to work around that.  Several members of this forum have similar situations with other concurrent diagnoses that require treatment that would otherwise be contraindicated for dysauto but is necessary and just has to be worked around.  I'm juggling the same situation with my cataplexy medication right now; it can be tricky, right?  

[Mom2four85]

I'm new to this side of the forum and wanted to say thanks for the info on the stockings.

Someone had a link that has some great info that told how to work into the prescription strength ones.  I'm going to try the low ones and order the higher ones and see how it goes, FL even during the winter is warm so I'm not sure how long I can tolerate them.

I upped my salt intake some yesterday and actually felt a bit better.  I thought being on Midodrine 3 times a day, would be my "cure" but have had some problems the past month of fatigue & wanting to crash early also.

[laurab2818]

Re. compression stockings, I found it hard to put on and take off the thigh highs and that was even with someone helping.  I found it takes a lot of strength.  I've only worn them once.  I will start wearing them next week when I finish the 30 day event recorder.

[Jenn0030]

I was placed on the Toprol several years ago post heart attack in my 20's (prior to any knowledge of any dysautonomia issues).  They won't take me off the Toprol because I have the heart attack at such a young age, it is supposed to protect the heart as well (I did have minor heart damage).  I never go tacy, at least if it does I haven't noticed.

Midodrine was added just for NCS only very recently to be used despite my current use of toprol.

[acesew]

Once I had the loop recorder implanted, the cardiologist saw that my HR would speed up.  I kept telling him that I felt really bad at these times.  He would tell me there was no reason to feel bad, but put me on the toprol to work against the tachy problems.  And kept me on the midodrine. It was really hard on me.  At one time, I could hardly stay up for a couple of hours.
Now I am not on any of that stuff.  At least me HR isn't as low as when I was on it.
It confused me too.  That is ultimately why I made them take me off of it.  It seemed to be fighting everything else and I was even worse with energy levels.  There are some crazy drs around.

[Heiferly]

Why were you put on Toprol in the first place?  I'm confused.  Your heart rate was already low and your BP was low (or orthostatically low)?  Were you also going tachy?  Metoprolol is generally prescribed in dysautonomia for the purpose of lowering high heart rates such as in inappropriate sinus tachycardia or POTS.  The midodrine and the metoprolol do have opposing effects on blood pressure, though it's a question of degree that varies by patient (because they do not share a common mechanism of action).

[Jenn0030]

I only started the midodrine after my first visit with one of the bigger known specialists 3 months ago.  I called them again last week since the initial period of improvement had worn off and they did up the dose.  If not any better I am to call back for a possible switch to ritalin.  

[acesew]

Just thought I would throw something into the loop here.  I was on midodrine and toprol last year at Christmas.  I have a "naturally" slow heart rate.  The midodrine nor toprol seemed to help me.  I got to where I was taking my pulse and BP several times a day to see what was going on.  Not sure which, but fairly certain, the toprol was slowing my pulse down quite a bit.  At night it would go down to the 30s.  During the day when I was active it was 40-low 50s.  It seemed like the midodrine and toprol fought each other.  

I don't know.  Anyone have any thoughts.  It may just be me also.  I seem to be pretty sensitive to a lot of these medications.  They affect me alot differently than they affect most.


Another question: anyone taking Ambien?  How do you like it?

[Heiferly]

Have you considered going to Vandy/Cleveland/Mayo to get testing done to better understand why your blood pressure is so low despite the midodrine?  Considering your case is complicated by treatment limitations imposed by your cardiac history, seeing the experts at one of these centers might be beneficial in pinpointing the exact dysfunction in your body and viable treatment options.  I would want to explore all of my options before I settled for tolerating BPs in the 80s/50s range on a regular basis.  

[Jenn0030]

I am on a very low does of toprol, 25 mg and it has been dropped over the last couple of years from my initial dose of 100mg.  I would have thought that they would have considered dropping it as well, but I think because I have a history of an early coronary event they are afraid of taking that away.  I can't sat that I can blame the beta blocker on the low BP/HR as I have been on this med for almost 5 years and my BP / HR has not always been like this.

I actually have a decent BP during most of the day, nothing like it used to be but enough to keep me upright.  It is usually around 90's / 60's.  Unfortunately, it does leave much room to drop for me to start feeling bad which is usually in the mid 50's. I spend most evenings 80's/50's.  I took it not too long ago and it was 84/52.  It is also very low in the am.  It does help if I get on my back an elevate my feet, that usually diverts any near syncope episodes.

Position for me doesn't seem to matter as I have passes out standing and sitting.  

I drink water with the power-aid packets for a little extra sodium constantly during the day and evening. I also drink G2 so I am not directly getting sodium, but still getting some as I know that it is helpful.   (Doc insisted to not increase the sodium too much, yet.)  

[AireScottie]

Which part of the stocking-putting-on do you have the most trouble with?  When I had waist highs, the problem was I couldn't get the legs both up at the same time.  That's not a problem with thigh highs.  Do you have trouble with just the physical strength to pull them up?

[Heiferly]

Have you talked to your doctor about possibly changing the dosage of the beta blocker or trying a different one to see if that could cause less pronounced lowering of your heart rate/blood pressure?  Is your blood pressure equally low during the drops regardless of position, or does lying down or sitting with your feet elevated change things?  Have you tried boosting your salt intake at the time of (or shortly prior to) the evening crash, such as drinking a glass of bouillon or v8?  

Am I correct in understanding that the low HR/BP is due in part to the effects to the beta blocker and that without the beta blocker you don't have such dramatic lows, or am I misinterpreting?

[Heiferly]

I just got a rx for 40-50 mm Hg thigh-highs and I'm hoping I'll like them better than my waist highs.  

[laurab2818]

Wondering how your compression stockings are going?  I will start wearing mine in a week when I finish the event recorder.  I hope I can tolerate them since they can be hot and SO hard to get on and off. But if they help, maybe that will make me more motivated.  Our old house is so cold and drafty in the winter (upstate NY climate!) that maybe I won't mind the extra warmth!

AireScottie -- nice to see the stockings are helping you.  That gives me hope.

[AireScottie]

I wear the thigh high stockings and find them extremely helpful.  They're much easier to get on than the waist high.  They are very warm, though.  I got over the ugliness factor and wear skirts a lot.  Even the knee high can be helpful.  You might try getting cheap knee highs from a store (drug store, Wal-Mart, or Ames Walker online).  They're much cheaper than the prescription ones, so it's a good way to find out if they help.  Most stores only carry 20-30, but you can order higher from Ames Walker without a prescription.  I've seen them priced $10-20, which seems reasonable for something that might not work.

[Jenn0030]

I am working all day long and taking classes a couple days a week at night after work so I don't have time for a nap ( I would LOVE to have a nap!)

I get up a 7 ish and feel great for a couple hours in the am ( I am guessing the coffee might help a little in the am).  

I just upped my midodrine (again) I am now taking 2 tablets at 7, 11, 3 and 7.  I am hoping that this will keep me more awake at night.  I seem to be "okay" during the day.  I say okay because I can function - I feel really good for about and hour or two and then my BP and HR rate plummet and I go back to feeling crappy.  But it is nothing like what I feel like in the evening after I stop taking the pills....I will just fall asleep in the middle of a conversation, almost like passing out...but not quite.  My BP drops really uncomfortably low.  

I am  on beta blocker (toprol) to protect my heart due to a previous MI almost 5 years ago.  

I tried the compression stockings, but was unable to do the waist version - I have horrible heat intolerence ( I get hot even in the winter)  My doc said that the leg only was a waist of money, so I never tried those.

[Heiferly]

Are you working a full-time job plus taking night classes?  Do have time during your day that you can rest or nap or are you "going" all day long?  What time do you get up in the morning (i.e. how many hours do have before your crash)?

What other treatments are you using besides Midodrine?  Compression stockings?  Any other medications?  

[AireScottie]

Some of us are "bad" and take our midodrine through the night.  The only reason to take it only during the day is if your BP goes up when you lie down.  If you have a BP cuff, take your BP while lying down, after you've been down a few minutes.  It is really hard to convince your doctor to prescribe this way, though.  Mine finally listened when I told him a pass out at night.  Good luck!

[Jenn0030]

I tried to up my sodium in the beginning but I had a heart attack in the past so my sodium intake is restricted to what I can add to my water ( I drink sports drink like stuff all day long).  When I was adding sodium to all my food my BP went thru the roof - I guess it was due to my low sodium intake for all these years.  Thanks for the input, I called my doc to see if they would consider a different med to help me thru the evening.

[acesew]

That was kind of my problem.  It helped and felt pretty good for a little while (the first time I was on it).  But then it just went back to the way it was before.  The second time they put me on it, I couldn't tell any difference.  I think it may just be some people respond better than others.  I think they had me on 10mg also.  Have you also uped your sodium intake.  When I first started on this "expedition", the dr I had at the time told me to keep salt on me in some form.  If I felt like I was about to faint or did faint to eat some salt.  Maybe if you also increase your sodium  it will help you get through your day. I work from 7-3 and those last 3 hours are the hardest for me.  By the time I get home I am so tired I can hardly walk.  I understand how you feel. Keep up with this forum and be sure to read some of the other posts.  This has helped me understand what is going on.  Take care......

[Jenn0030]

Thanks for responding...

I take it at 7,1,and at 6.  I am supposed to take 5 mg and I have upped to 10mg, my doc said it was okay to try, and that only seemed to make the crash harder.  I will say that I am not always on my schedule, maybe that is the problem.  If I am about to fall asleep at work I will take one early.  I just miss the 1st couple weeks where my brain seemed to wake up from the pills.

[acesew]

What times do you take it.  I was on it for a long while when the drs were trying to figure out what was going on.  They just assumed my bp was dropping.  Midodrine helped me for a while and then it stopped.  Midodrine is a short acting drug.  Usually drs recommend taking it at 6, 12, and 6.  You may need to take it at 7, 1, and 7.  I don't know.  I never effected me negatively when I was late taking it.  My understanding of Midodrine is that it is to stabilize BP.  I am actually concerned that you do this after an hour of taking this.  Usually it lasts longer than that.  Unless you are pushing too hard during the day and your body just can't handle it.  You may need to call your dr. back on this.
I am not an expert on this drug.  Just took it once for a couple of years and then was put back on it for about a year and a half.