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potsgirl

Midodrine - Please Take A Moment To Answer : )


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Hello Everyone~

I've been having a lot of problems with my Midodrine, becoming tolerant of my dosages fairly quickly. I went from 5 mg to 22.5 - 25 mg in about 6 months. My doctor doesn't want me above 15 mg, but I can't function without the drug. It's a Catch-22 situation. I have also lost about 15 pounds after taking this medication, and am now dangerously thin.

Northera, the drug that Chelsea Labs was trying to put on the market in place of Midodrine, has not yet been approved by the FDA, and it looks like another major drug company is buying them out and will hopefully get Northera approved in the US in the next year or two. I'm about ready to fly to Japan, where Northera is sold as "droxidopa" and has been legal there for years, with excellent results.

Please let me know your thoughts and take the poll.

Thanks and Cheers!

Jana

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I have increased midodrine to 20mg upon awakening in the mornings - any less and I don't have enough blood pressure to function. I then may take another 10mg about lunch time so I can make it through the afternoon. By the time I get home, I'm pooped out and pretty much retire to my recliner. Before I was diagnosed properly, I was taking between 60-70mg a day and still having major BP drops. I think it is the disease that waxes and wanes requiring dose adjustments. Certain treatment regimes will alter the need and dose requirements for midodrine. Perhaps there are other drugs that are causing your varied responses? - also, stress and hormones can alter responses. It's not a perfect drug - lots of side effects and difficulties. Of course, the disease requiring the use of the drug is also difficult and unpredictable!

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I liked the boost I felt on Midodrine. The side effects were more tolerable than how I felt with low BP. Unfortunately or fortunately my BP's are up these days to around 105/58 so I stopped taking it. Life was almost better when the BP was low and I could count on the meds to normalize it. Now my BP's are a little higher and not low enough to not experience a spike with the medicine. I originally was happy with 2.5mg 2x/day but started to notice that it wasn't enough after about 4 weeks..... I was just about to up my dosage when I had a weekend with a spike. So I can see how your body accommodates very quickly with this drug. I also salted and hydrated with it. It helped the drug to give me the effect I needed for longer in the day. Good luck

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Thanks for the replies, E Soskis and Relax86! And to the poster who emailed me. I'm really interested in the weight loss aspect of Midodrine, please, if more people could answer...

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My dosage isn't on the poll...between 15-20 mg daily. Can't tolerate higher doses. I lost weight when I first got sick, but that was months before I started Midodrine. Had a partial return of appetite, also months before I started midodrine. Didn't really notice any connection with either weight loss or gain when i started on it. Have been on it for two and a half years and have gained weight but don't think it's connected as I maintained a steady weight for quite some time before starting to gain.

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My son takes 10 mg of Midodrine every 2 hours which usually equals 60 - 70 mg/day. He definitely has a better appetite when he takes it. I assume that it's because he has more blood flow to his gut when he remembers to take it so it decreases his nausea significantly. He has to take it so often becasue the doc says that his young metabolism is super fast and kicks it out. He is 6'3 and weighs 243 lbs. When the pharmacy messed up his beta blocker he was miserable and his HR wouldn't go below 160 each day and he lost his appetite even with Midodrine and he lost 20 lbs in 1 month til we figured it out. That's the only weight loss he has ever had. He has permanent goose bumps but doesn't complain of any other side affects.

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I have the most problems when sitting still. Seems Midodrine helps me more when I'm having to stand a lot, and not as much when I'm sitting. I'm on the fence right now about taking it at all, as sometimes I wonder if I feel worse. I was taking Midodrine in combination with Mestinon, and seemed 20-30% better. But, then my heart started having slow beats, missed beats which made me way too self aware and the being too self aware is when I start feeling bad and dizzy and fearful. Before all of this I was taking Adderall, and it was helping some. I may go back to Adderall to see if it works again.

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Thanks to those who replied...Any please feel free to still answer. We're trying to figure out my almost 20-pound weight loss over a month.

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It might not be the midodrine. I have a wide fluctuation in weight with dysautonomia - I lost over 40 lbs in a few months a few years ago and we never figured out exactly why - now have a range of 10-15 lbs up or down and this has been steady for the past couple of years.

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At Cleveland Clinic they recommended I try Mestinon instead of Midodrine. (I couldn't tolerate it.)

You may want to try a Midodrine break and try Mestinon in it's place for a while. Our bodies easily adapt and switching meds ina similar class can be helpful for giving your body a break. Btw- you may already know but Mestinon (Pyridostigmine) is a cholinesterase inhibitor so it blocks the enzyme that is a catalyst for acytecholine, a key player in neurotransmission. Used mostly in myasthenia Gravis patients. It does help maintain BP without elevating it in a supine position.

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"RAVENOUS for food!"

I haven't really been on midodrine long enough to notice any weight fluctuation, but it does make me very hungry! I cant eat in the morning (I vomit it back up) so I get awfully hungry by lunch time with the midodrine.

I take 5mg twice a day

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The weight loss may not be the medicine. I lost over 30 pounds in a couple of months when I relapsed last year. I still have yet to put most of it back on. I think I've gained back 5-8 pounds in a year. I hope you get it figured out, I was on the dangerously thin track as well....

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I have recently started taking Midodrine around 5mg a day when I need it. I have found it very helpful and I am hoping it will be a good drug for me. I have not noticed any side effects (except scalp tingling) however my dose is low.

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I think when it works its great. Good luck to anyone taking it.

I tried it and still have it here but for some reason it made me super quesy - the first two hours the worst and then gradually improving - the only dose that helped my POTS was the second dose. i was contemplating getting up at 5am and taking the first dose, sitting around feeling like crap then taking the next and going to work LOL.

I find sudafed better for me - less of a crash at the end.

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I take 10mg x 3/day. I noticed a decrease in blood pooling, especially in my hands. My hands used to be red and splotchy almost all day long. I notice this less now, although it still happens. The only side effects I had was scalp tingling and goosebumps about 15 minutes after taking my dose. After a few months, this stopped happening. I did not notice a chance in my weight. Midodrine is fast acting and I can definitely tell when the effects are wearing off.

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Hi Potsgirl,

My son takes 40 mg 3 times a day. Are you taking your blood pressure during exercise? My son's blood pressure would literally bottom out. I caught on to this while my son was doing pt with a therapist at our home. I started taking his blood pressure while the physical therapist was working with him. It just so happen that our cardioloist happen to callrd our house during a pt session and actually spoke to the physical therapist when it was happening. I was also sending our son's blood pressures weekly because his blood pressure would bottom out when he was just sitting in the recliner.

When my started on Mididrine, he was put on 5 mg 3 times a day. So you can tell his dosage really had to be adjusted. Hope this helps.

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I am taking 5mg 3 times a day. I only have noticed a couple of pounds of weight gain, but i fluctuate a lot and have been eating a bit worse lately.

I can absolutely tell when my midodrine is wearing off. My pharmacy has botched up my refill and i can't get it until tomorrow, so I had to cut my dosage in half to have something in my system until i get it. I feel like total crap :/

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I too lost weight at the beginning of my illness and again when I am on a down slide. Like others have said I was dangerously thin. I have gained back some but not nearly what I lost. I am always trying to gain eating every three hours throughout the day. ( potatoes, beef, butter, etc...). Didn't notice a weight change with Midodrine but had to stop as it increased my migraines!

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I still take 2,5mg midodrine 3 times a day, and after doing so for more than 2 weeks, I would still say that it helps me.

But there are also some effects which I did observe and which I feel to be a bit cumbersome:

1) I takes up to 1,5 or even 2 hours for a dosage

to kick in. Here in hospital, this doesn't play a

role, but for every day life, I imagine this to be

quite a challenge to organise when to take a

dosage.

2) When the dosage finally kicks in, it feels a bit

too strong at the beginning. For the first hour,

I do get the typical goosebumps and itchy

scalp.

3) The best effect of every dosage comes about

3 hours after taking it and already weanes off

after 4 hours.

So, from every taken dosage I have in fact just

1 good hour, very much delayed and not really

able to plan when exactely I need to take the

dosage in order to have this hour...

Anybody else made similar experiences with midodrine? If so, how do you handle it, any "tricks" to get a good, consistent effect...?

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My BP is so low when I wake in the morning my BP machine can't get a reading. One 2.5 Midodrine does nothing despite laying flat after taking it. Taking a 2nd 2.5 tab will raise my BP to 60/40. After a few hours my BP will become 'normal' enough and I try not to take any for the rest of the day. That's a good day.

My BP is labile and goes from very very low to very very high. Am both hypo and also hyper (Both systolic and diastolic) ...So my sympathetic nervous system is misfiring and causing a lot of 'out of the box' reactions with both heart rate and BP.

I've tried every med under the sun and this is the first one I can tolerate. Others caused my BP to go too low and stay too low.

Good luck with it. It's new for me so I'll let you know about the weight gain issue. As for now my appetite is decreased on it.

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Thanks, kitt for your experiences with midodrine. I am sorry to hear that you are also having trouble with the right dosage...

It's in fact a pity (if not to say quite annoying!!) that this med is so difficult to handle, as I can fell it would help me a big deal in general!!

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Goschi, my response to Midodrine is much like yours or at least like yours in many ways. Are you experiencing any side effects that are constant?

I'm taking 2.5 of Midodrine between 5 and 7 a.m. and it does nothing for my BP. I go back to bed. Between 9 and 10 I still can't get a BP reading. I take another 2.5 mg and a few hours later I'm at 60/40. Ironically that dose tends to last all day. I've read all about half life etc...But this is how it works on me.

I've not been on it long but I'm noted by my doctor for side affects. My internist once said 'The only thing you get from meds is side affects' True dat.

But am 'glued' to Midodrine at this point because a dozen other meds have NOT helped....Including beta blockers, (BP too low), Labetalol, Mestonin, (contradicted in hyperadrenergic patients), Methyldopa, Clonodine....Have tried them all. Midodrine is the only thing that seems to boost BP w/out a lot of side affects.

The side affects I do have are intermittent scalp itching, loss of appetite, and a sense of sadness that has come on in the evening since starting Midodrine.

Was seen at Mayo in MN earlier this year by a dysautonomia specialist and visited her again since that first visit. I asked her 'Why am I not depressed?' Is it because my catacholamine dopamine level is high? (it's very high along with my NE...(Neuropinephrine) which is well over 1500 standing which makes me hyperadrenergic.) She said 'Probably'...So my very high dopamine level has also kept me from being depressed....Until Midodrine.

With Midodrine I've noticed an evening 'sadness'...So unlike me. One of the side effects listed for Midodrine is anxiety. I'm always the calmest person in the room. Yet, I read that someone who is depressed is anxious and someone who is anxious is depressed. So I hope this particular side affect of Midodrine is fleeting. I've not been on it long (almost 2 weeks), so I hope this particular side affect goes away soon.

Hoping others taking Midodrine will chime in. Though it does nothing for my hyperadrenergic state, tachycardia or bradycardia...I'm grateful that it helps with low BP.

Wishing everyone the best!

K

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Its funny. Before i was on florinef i could not tolerate midodrine. Now i am i tolerate it fine.

phenylephrene/ neo synephrine works i a similar way to midodrine.

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