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Midodrine Not Helping Anymore?


Guest brianala
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Guest brianala

Several months ago my EP put me on Midodrine after a positive tilt table test. I went off my beta blocker because I couldn't tolerate it - it was making me desperately tired. The Midodrine was like a miracle - for the first time in my life I felt normal!

But, it doesn't look like that's going to last very much longer. I'm having more and more days where the palpitations are back, the anxiety is back, and the soul-crushing fatigue is back. I've been meaning to call my doctor to see if I could take the Midodrine more frequently and more often (every 3 hours, four times a day at least) since it seems to be wearing off faster, but I'm wondering if I'm just building up a tolerance, and eventually it won't help at all anymore.

Is this a common thing with Midodrine? Does the effect of boosting your energy dissipate over time, or do most people do ok on it for the long run?

I'm so scared of having to live with this fatigue all over again after knowing what it feels like to feel normal, even if it was only for a little while.

I just want to cry.

:rolleyes:

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Guest brianala

Just an update: I called my doctor and they are doubling my dose of Midodrine. I asked about taking the same dose more frequently and more often, but they wanted to try a higher dose first.

Keeping my fingers crossed that this will help.

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I was just started on midodrine today.....so far after the first pill (5mg) I'm just cold, with goosebumps (which is a WARNING on the sheet that comes with the med...oh my!) and the skin on my head is tingling.

I tried 4 beta blockers and none of them worked, Im hoping this is my miracle med too!

How did you feel when you first took this med?

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Guest brianala

I started out on 2.5 mg a few months ago. When I first started taking it I felt great! My energy picked back up and the brain fog cleared for a bit. The problem is that it just doesn't last for very long.

I'm trying 5 mg three times a day now.

Good luck! Come back and let us know how you're feeling.

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I started off with a smaller dose and eventually worked my way up to 12.5 mg 4 X day. That alone is not enough now and I take an injection of octreotide three times a day. That will usually help for a couple of hours at a time. I also take fludrocortisone 2 X day. I'm hoping that the new drug droxidopa will help me. It may be approved by the FDA early next year.

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When i was on a different alpha agonist I found that for the first two days i felt fantastic - like energy and clearheadness and lack of brain fog i hadnt felt in years. Within a week I had trebbled the dose and it was still not working. Tolerance seems to be an issue sometimes with alpha agonists. I hear magnesium can lessen tolerance.

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I've been on the same dose for almost a year, no problem. I found it wasn't enough early on , and could feel it not having enough of an effect until we added florinef. I think my symptoms were getting worse and I needed something to supplement it. I take 6.25 mgs every four hours during the day, and 5mgs at night. I notice if I'm late with a dose.

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Guest brianala
Droxidopa is being trialled for NCS and not POTS.

I'm on Midodrine for NCS; I wonder if I could find a trial of this? Do you know any good resources for more info?

Thanks!

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I was on Midodrine for about two and a half years. I started on a high dose, had reactions like bradycardia and seizures, then cut the dose in half whenever the side-effects got unbearable. In November, I was on only 2.5 mg per day (one dose midday)...and that's down from 40 mg/day two years before. I was having many, many seizures every day, and the doctor thought I should up the dose to ward off the flare-up, but I thought the medication was causing the seizures so I discontinued completely. Seizures stopped the same day. However, I was since diagnosed with epilepsy, so it's possible that my chemistry is really different from other POTS patients...and it seems that Midodrine helped my pots (blood got to me head, and I didn't have as much cognitive difficulty) but lowered my seizure threshhold. So it's out for now. But it was really a very dynamic drug...my reaction did not stay stable for long and I had to keep adjusting and taking "medication vacations" to counteract problems as they popped up.

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  • 2 months later...
Droxidopa is being trialled for NCS and not POTS.

I am about to find out tomorrow if I'm eligible to participate in a study of this drug. The nurse called me today and asked if I was interested. My Cardiac Electrophysiologist will be the doctor hosting the trial location where I will participate.

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I take it about 2 to 3 times a day (third as needed), usually 10mg, 5mg, and 5mg. I'm allowed to adjust within reason (10mg, 10mg, 5mg), etc.

I also take a Beta Blocker and it works well together with me (very low dose BB, per my PCP) but the mix helps.

I haven't had to increase my dose much yet, but at least I have room to do that in the future.

Good luck with upping the dose, I see a lot of people become more immune to meds than others. POTS is fun. :)

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My 12 yr. old son (5'9 and 170lbs) take midodrine for POTS. He started with 5 mg 3 times/day and he said that he felt so "clear" and he could understand me better. He had the goose bump/tingling side effect for 2 days and then that stopped and so did any feeling better. His doc increased it to 10mg 3 times/day and that has been working much better but it seems to wear off at about 3 hrs so we might add 1 more/ day when school starts. The side affects have resolved just occasional goose bumps. His cardiologist says "it's safer than aspirin".

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Can anyone tell me if they have had this happen to them on Midodrine? I was on it a small dose early evening and at bedtime. The Dr. told me

I was the one 1% that have to take it laying down ad the instructions say never lay down. I was laying down even at the first dose. When I went back 2 weeks later I had no idea what the year was and was sure my blood pressure machine was broken and displaying the wrong year when I went to download the info onto my computer. I saw another Dr who saw I was so confused and made me tell the cardio. I was SCARED, really scared and thought would I ever get my brain back.

Well, according to my family I did and professionals agreed. I still play the ongoing game of charades, but I disclose right upfront with people and I laugh about it. Now I know I need it and I see my cardio weekly now and we have to make a plan. Nighttiime has become dangerous for me.

Anyone else have to take this at night and had the feeling of losing their memory. I started florinef this morning again , we'll see what happen with this.

Also got thigh high compression hose and love them.

"Safer than asprin" that's when I say, "you take it then we'll talk doctor."

Blessings and love to all~

Bellamia~

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I started with 2.5 mg every 4 hours... then I guess I built up a tolerance and was increase to 5mg, then to 10..then I started to feel even worse when I took it at all. I was off of midrodrine for about a year and then about 2 years ago we tried it again. Now I take 10mg every 3 hours, starting at about 1pm and I take adderall xr as soon as I wake up with the other medications and I absolutely feel it if I am late with a dose and can usually tell within a few minutes that it is time to take it again based on how I feel.

Dr. Grubb prescribed me adderall, my local EP had never heard of using it to treat POTs but spoke to Dr.Grubb and found out that it is basically the same chemical compound as adderall but I think they said there was an added stimulant (or something like that). Anyways, midrodrine is by far a miracle drug BUT without that and the rest of my medical cocktail I can't function..and it has been a big big help!

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I started with 2.5 mg every 4 hours... then I guess I built up a tolerance and was increase to 5mg, then to 10..then I started to feel even worse when I took it at all. I was off of midrodrine for about a year and then about 2 years ago we tried it again. Now I take 10mg every 3 hours, starting at about 1pm and I take adderall xr as soon as I wake up with the other medications and I absolutely feel it if I am late with a dose and can usually tell within a few minutes that it is time to take it again based on how I feel.

Dr. Grubb prescribed me adderall, my local EP had never heard of using it to treat POTs but spoke to Dr.Grubb and found out that it is basically the same chemical compound as adderall but I think they said there was an added stimulant (or something like that). Anyways, midrodrine is by far a miracle drug BUT without that and the rest of my medical cocktail I can't function..and it has been a big big help!

Stace,

I find this very intersting and I hope one day we get to chat.... Today I've very confused, called the doctor after another passout last night said you should have called 911. Ok I live alone and I tried to explaine how dumb I am after. Plus I don't do er's. It will scare my dog to death I'm always ok afterwards, just banged up and maybe messy from what spilled on me.

anyway, I know you all know what I'm talking about. My PC is moving today but the med/sec has pots also so I have a saftey net. I also bleeding vaginally and had a little bout with cancer last year. so my lows are getting lower and the migrains are back. I posted somewhere that caffine had been my drug of choice for years mostly pepsi or coke diet soda by the gallons. I had been self medicating my self along with the sodium in the drinks. then I was on ritalin large doses you addhd, didn't know it was brain fog. As I've had this Potsy thing forever, just gotten worse as I've aged and added medications to peserve the organs.

I stopped the ritalin years ago when there was the big hype it could hurt one's heart and I was actually having the feeling like i was having anxiety attacks. Once dx'ed I was put on so many different meds for allergies, Pots, to try to sleep, gastro, let's just say when they give you a form to fill to fill out for meds an allergeries they weren't thinking of me, that's for sure. So, I asked for ritalin back again and the doc suggested concerta er just to help with the brain fog and keep me awake. Now I need to see my cardio again thursday and will be interedted in telling him about the atterall. my perscribing doc is away and would like his imput for dosing. as I need help so I won't crash in the night and would like to maybe have a little jolt of energy as the dose of concerta is worn off.

How much adderall do you take at 1 pm if you don;t mind telling me? When I taught high powered areobics I took it as late as 6pm. but most say do not take after noontime, or you won't sleep. These days sleep is fragmented for me.

Hope all is well everyone. As we walk on a fine line trying to balance our lives and not fall.

~We are going to know a new freedom and a new happiness one day~ :)

from the promises

in a time for joy

BellaMia~

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Hi Bella,

Adderall is very similiar to the ritalin and concerta that you have taken. Grubb said that some patients don't tolerate adderall and because concerta is so expensive the insurance companys will make you try everything else that is similar to concerta before they pay for it. I guess I was lucky that the adderall made a difference for me. The mornings are the worst for me so it helps enough that most days I have enough strength and energy to get out of bed and work. I would assume that since you have already taken similar meds the adderall would have the same effect on you that the others did but I don't think that you can take adderall and ritalin at the same time... I assume you would crash! I take 10mg of the extended release when I wake up and then once I feel like that is wearing off (usually around 1pm) I start taking 10mg of midrodrine every 3 hours until a few hours before bed. How did you teach aerobics with POTs? That is incredible! Good luck at the doctor

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Thanks Stace,

I didn't see salt as a componant in concerta, I'll investage that I take 54 in the am and wanted more as my bP won't stay up postural. I have some pretty funny stories how about how I taught and for so long and how I managed as it was in a pool high powered, deep water, H2o areobics. I could never count my heartbeat and would have to get out of the pool and hold onto the rail for dear life and try to catch my breath and drink. I would pretend I was going to teach them from the deck as I rested low to the ground. or sat. I had a bad back and I used that as an excuse.

I always wondered why I'm I was out of the pool, but I was teaching several classes a day along with teaching and directing children's programs. I tell a lot in my about me page. They always knew something was wrong with me. Boy, do I miss the interaction of people!

I'm so happy I have this forum and all of you have been a blessing to allow me the freedom to say whatever I need to at anytime.

Thank you everyone for your ongoing support and information.

Blessing to all today~

:) bellaMia~

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