Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Anyone take it? I was prescribed it for fainting and low blood pressure. Florinef, licorice, salt and water weren't helping.
I'm hoping this works, but I'm a little scared of it. I never take medications so everything makes me nervous. This one has a black box warning so...........
posted
Hi Summer - I took it back when I was having fainting and low blood pressure issues. It was THE drug that helped and made me feel better - enough so that I could get back to a decent level of function.
I have been off it for about 2 years - as the need largely went away with ongoing lyme treatment - but I think it was one of the more important drugs I took while treating lyme with Abx.
Posts: 118 | From New England | Registered: Apr 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I was prescribed it but haven't taken it yet.
My neuro told me I had to stay upright (or reclined but not lie completely flat) several hours after each dose, but my LLMD just said to monitor my BP as it obviously raises it.
I bet it's just what you need to counteract the beta-blockers affect on your BP.
Summer3
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Member # 35286
posted
I hope so. I'm a little scared of it, but I'm scared of all meds. I had the choice to try that or triple the dose of Florinef to 0.3.
Even though Florinef is not supposed to cause immune suppression, I'm scared to take that dose. In Lyme, I haven't heard of many LLMD's using doses over 0.2. Since I'm not on antibiotics for Lyme anymore, and I'm still extremely symptomatic with a very low CD57, I don't want to take ANY chances when it comes to steroids/immune suppression.
I caught strep which was the first time I've been "sick" with an illness other than Lyme in years right after starting Florinef at 0.1 and I have another fever/sore throat again which is not a common symptom for me. Maybe it's a coincidence, but I don't know...........
In a way, I was happy to get another option to try. Surprised as well since it's from a mainstream cardiologist. I was expecting to be told there is nothing I can do, my tests are normal, or my symptoms are just stress like every other time I've been to a mainstream doctor.
Fortunately this appointment I was taken completely seriously, but it's sad that it had to get to the point that I'm coming close to fainting nearly every day and losing consciousness in cars/parking lots (parked) before I can get help or treatment from a "regular" doctor.
The warnings on midodrine are scary as well and I still haven't been told an official diagnosis. My BP runs very low outside of doctor's offices and I'm assuming he's thinking POTS/NMH or some type of ANS dysfunction but maybe not. From research I see on dysautonomia, a lot of people have difficulty getting help and treatment for those conditions and need to find specific doctors to see, so it would be pretty weird if I just stumbled upon a random doctor willing to address it.
I didn't have to do a TTT. He said with the BP numbers I've tracked, he is pretty sure he could get me to pass out by just standing a certain way. I usually don't feel faint from standing or when going from sitting to standing. Mine is more from standing to sitting. He wasn't surprised by that and he very accurately described the exact symptoms that occur. So this time I felt much more confident in the info since he took some more time to discuss things and seemed to know what he was talking about..........
I'm supposed to take mine in the morning and at night even though there are warnings about lying down with it. I double checked on that and he insisted to take it at night and it won't shoot my BP up too high. I hope he's right about that............I have a hard time trusting doctors as you can see
I know I posted this morning but wanted to send thoughts and prayers your way for you to feel better.
I also wanted to say I was EXACTLY where you are now a few years back.
I would be walking around the mall and feel faint and go into tunnel vision all the time. I would be sitting at my computer and have to lie down on the floor as I was going to pass out. Trying to go to Mass (Church) was tough - all the kneeling and standing would make me pass out or get close.
I would try to get some exercise, even some walking - but afterwards my BP would go low and stay there and i could barely get out of bed for that day.
It was probably one of the most difficult experiences I had during all of this so I commiserate completely with what you are going through
I saw a couple of cardiologists, arrhythmia specialists, etc. that got me no where. Mostly they were too busy, did not believe in lyme and spent no time trying to get to the bottom of what was causing the problems
It wasn't until I saw a third cardiologist in a small medical office after passing out one night in the bathroom and smashing my head and arm on the bathroom tub and making a visit to the ER
He took the time to listen and try something different - that was the midrodrine and it was a life-saver for me. I am hoping you will see the same results.
IIRC about having a similar discussion with the cardiologist about the laying down warnings - his comment was yes, laying down can increase blood pressure for people, but he said that since I had such a low BP issue I would be fine. I think the worry is about putting people into hypertension by laying down, but I don't think you will get there (I am not a doctor though so don't take this as advice just my anecdotal comments) - if you want to be safer, I would take it a couple of hours before bed.
Just wanted to share some of my past so you know you aren't alone in this and again wish full thoughts and prayers to your recovery.
Posts: 118 | From New England | Registered: Apr 2013
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I take both Florinef and midodrine, and have for years.
My LLMD recommends not to take it within 6 hours of going to bed. As the days goes on my BP goes up, I think due to the Toprol wearing off.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
So far my BP is not raising. I felt like crap this morning and almost passed out. My BP was 86/45. Last night it was double digits also. Lying down makes no difference to me so far. He has me taking one at night.
I don't know if my dose is too low or what. I was expecting this to definitely raise my BP. Is it a medication that needs to build up? I was under the impression that midodrine was short-acting.
Looks like I'm going to have another month of close calls with fainting since I don't go back until after Christmas to the cardiologist.
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