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Is My Midodrine Dosage Too Low?


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Hi. I was dx with Pots in January '13 after 8 months of very acute symptoms. First I tried florinef, various dosages and then Mestinon was added to that. The mestinon was what finally allowed me to get out of the house as it completely took care of the tachycardia when being upright. I was almost back to myself although despite an exercise program, I still had PEM. All good for 2 months and then slowly the old symptoms came back, most bothersome being the brain fog and weak legs. I asked the neuro for more mestinon but he preferred I have another ttt to see what's going on.

TTT 'ing last week which showed I no longer have POTS.- no surprise there. I do however continue to have very low blood pressure especially after a meal or even a snack- sometimes drops > 30 pts systolic within 10 minutes of eating leaving me lightheaded and even presyncopal. This of course didn't show up on TTT b/c I didn't just eat. He said if the midodrine doesn't help, I should probably go for some counseling!! What??

He told me to discontiue the florinef (causing too much head pressure/migraines anyway), and instead take 2.5 mg MIDODRINE for hours / day and to continue with the mestinon and it would likely do the trick. Well, no...... I still getting systolic pressures of 90-100 with symptoms daily. The MIDODRINE has done nothing at all! When I eat, still dropping to 80's systolic for about an hour. I'm supposed to eat light, yet often. But that's leaving me light-headed all day and unable to go out of house again! Typically I'm bradycardic daily as well, especially by evening.

It seems some people here r on MIDODRINE 10mg 2x day. If that is the normal dose, then there's a good chance I can still get better by asking neruo if I can increase the dose. I have tried taking all the dysautonomia meds on an empty stomach very first thing in morning... no difference.

the last few days I've added in the florinef b/c I need my BP up but its made no difference. My 87 yr. old mother is failing and I anticipate some stressful decisions will have to be made in the next few days. I really need a better blood pressure to manage whats ahead.

I already do all the self help measures and have even added daily pseudophendrine which might bring BP up a bit, but not enough. The only time my systolic is between 100-110 is in the first 45 minutes of rising from bed. I wish docs would work on the CAUSE of my low blood pressure instead of just the symptoms. After all, if the symptomatic relief isn't achieved, it must be all in my head, right??!

Any suggestions at all??

thnx.

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Charlotte,

I honestly don't know what the "typical" midodrine dose is, but when I was taking it my dr prescribed 15/10/10 mg 4 hours apart. This was on top of 0.2 mg florinef daily. We later figured that my BP was not an issue so I discontinued taking the midodrine first and the florinef about 1 year later. Now I'm only taking mestinon.

From what I've been reading - the florinef may take a while to start working, so you may want to give it a bit of time to see some benefits. Plus, an increase salt and fluid intake are strongly advised in order for the med to work for you - but I guess you already know that since you've taken it before.

An idea, as I don't know which of the self help measures you have tried...have you considered compression garments? (stockings or an abdominal binder) they may help boost your standing BP - there have been several posts about that on the forum. You can search for them and see if that's something that might work for you.

One other thing that may be worth mentioning - taking mestinon and florinef on an empty stomach may not be a good idea, but you know your reactions to meds better. In my experience, if I take my mestinon on an empty stomach I risk a couple of things: nasty stomach and intestinal cramps, bradycardia, blurred vision, drowsiness, to name a few. Also, my florinef bottles had labels saying that I should take it with food. Florinef can be pretty harsh on your stomach.

I hope you'll get some answers soon.

Alex

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Mididrone did not help my blood pressure at all and I was on 10mg x 3 times a day. I don't know how that helps you, but thought I would put it out there.

Sorry to hear about your Grandma, and I hope you get that BP up!

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My son cannot get by without taking midodrine. He is on a very high dose. I would suggest you talk to your doctor. Don't let them chalk it up to anxiety. Find a doctor that understands what low blood is.

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I take 10mg 2x/ day. If I have a long day, I take a third 10mg dose, but usually it isn't necessary.

I started at 5 mg with our intention being from the beginning to get up to 10 mg after I got used to the 5 mg. I was instructed to send her my blood pressure readings from each day for a few weeks so she (my PCP) could monitor the levels. It has helped so much with my lightheadedness.

A few months after starting and getting my blood pressure as stable as its going to get, I was able to add a beta blocker... something I never could have tolerated with my hypotension.

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Hope you are doing better. Some people use caffeine when they are having a really bad day. I've tried a coke with my son but it makes his symptoms worse? Are you on a beta blocker? My son is just about off his florinif because it does not help keep his blood pressure up.

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Thanks everyone for your suggestions and answers. I do already wear compression socks (and abdominal binder before meals) but soon will be doing less of that as the weather gets hotter. The doctors will not put me on a beta blocker b/c of my already very low blood pressure. Taking the pills on an empty stomach has not bothered me (yet) and I will have to continue that route b/c I need the meds into me as soon as possible each morning. If I eat food before 45 min. of getting up, I'm nauseous. Mestinon has not done a thing to help with my slow bowel motility...thats one side effect I was actually looking forward to!

Yesterday I took the 2nd MIdodrine dose (2.5) 3 hrs after the 1st dose instead of waiting 4 hrs. It seemed to help a bit which shows me that 2.5mg isn't enough for me. I might just take a double dose tomorrow morning since many people seem to take 5.0 / dose anyway. I'd love to get off the florinef all together eventually...it causes head pressure pain and I've read it can effect bone density with long term use. I'm post menopausal and already facing that.

I've never liked coffee. I may try it again though and see what happens. A few years ago, my blood pressure crashed and I passed out when a pain doctor injected marcaine shots into my back. (lidocaine +epinephrine ) so I want to stay away from anything like that - yet I find it strange that pseudophedrine can help my bp to rise without a similar response.

Thanks again for your responses!

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You could always try caffeine pills (cut them up!) if you don't like coffee but would like to see how your body reacts to caffeine.

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Any store with a drug section should have them. It varies where they keep them. Some keep them by pain medication (especially the Excederin), sleeping pills, or diet pills. I've noticed it is overwhelmingly kept on the bottom shelf. They typically come in 200mg pills and are pretty cheap for what you are getting, especially compared to a caffeinated drink!

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Thanks for the info Jackie. I'll look for them at the drugstore but....I may not need them! Today my pressures are much better! I'm making sure to wear the abdominal binder and compression socks daily now, especially at meal times as I have post prandial hypotension along with regular OH.

I don't know if its the compression garments or me beefing up the midodrine dosage but my numbers are better and definitely I'm less lightheaded! Yeah!!

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Wonderful news Charlotte!

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Hi Charlotte,

I'm glad you've had some improvement now :)

I read this thread with interest. I was put on 2 x 5mg midodrine a day, about a year ago, for a short period of time. For the first couple of days I had some improvement, then I went back to how I was before. I was taken off the midodrine a short time later, but then was put back on it at 2 x 2.5mg daily. No improvement at all. I saw the cardiologist today, who has upped it to 3 x 2.5mg to begin with, moving on to 2 x 5mg. He seemed very disheartened that I'd had no improvement with midodrine, and said that most people do respond positively to it. I feel a bit flat after the appointment, and can't help wondering if I'm on too low a dosage. :unsure: I'm not hopeful of improvement with this new dosage, as it's no higher than I started with. It's so awkward, as you don't want to tell the consultants what to do, and they must have reasons for the dosage they prescribe, but I'm concerned that it seems he will write midodrine off for me if no improvement with the new dosage. I would really like to give it a proper chance before giving up on it though. :wacko:

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Charlotte,

Glad to hear that there is some improvement. Have you always worn the binder? I was wondering where you brought it. I want to buy one for my son. I have seen them at Walmart, back in the exercise department. They are adjustable. Is this the type you are using or is it custom made?

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@ looneymom - I got my binder at an orthopedic/health supply type store. I think I paid about $30.00 for it. I haven't always worn it, mostly just experimented with it off and on. Recently post prandial hypotension has become quite an issure so I started wearing it a few days ago for most of the day. I did that around the same time I started the midodrine so not sure which is providing the most help. You can look up dj Orthopedics, type abdominal binder in the search box. My particular binder is the 3 paneled one. It's adjusted with Velcro. I would think that Walmart has similar products available.

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@ Amber - I don't know why the neurologist started me off on such a low dose either. I have not asked him if I can increase it but I'm doing so anyway because the alternative in his words 'to seek counseling'. Nutty advice coming from a specialist.

I know what you mean -I've come away from app'ts either uplifted or dejected... depends on which doc I'm seeing. One offers encouragement, every time I see him. The other one...not so much.

Hang in there.

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Thanks Charlotte. Yep, I would be pretty miffed at having counselling as the alternative! :o Unfortunately, when some specialists hit a brick wall with treatment, they settle on the psychological route. It's ridiculous.

Thankfully, I have a great cardiologist, I'm just a bit deflated with his recent lack of hope for my improvement. I have decided to be hopeful anyway :lol:

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Frustrating news to report - Well, I won't be doubling my dose of midodrine again. Yesterday I took 5.0mg and 2 hrs later my heart rate was down to 40 (and bp was only 99/68). Although the heart rate improved (took 2 more hours), I felt off all day. And I got the strange psychedelic visions at night with the burning feet that I haven't had in a long time. I don't see where those symptoms would fit in with the earlier bradycardia but they must be related somehow. Perhaps its simply that my dysautonomia kicked it up a notch when triggered by the low heart rate.

Turns out that bradycardia is a side effect of midodrine in some people. I'm often dealing with low pulse already so I'm not surprised. I was really hoping to be rid of the binder and socks but looks like I'll be back to those and taking the 2.5 midodrine 3 hrs apart and hope for better bp results (they improved, but weren't 'normal' yet)

I'll try the caffeine pills after I'm certain I've recovered enough to try another experiment.

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