Started Midodrine This Am

[Ctat333]

Hey all

Had my follow up with Dr. Suleman yesterday. I have been trying to manage my POTS and EDS without meds and thru lifestyle changes only, and it just wasn't working. I have been feeling horrible, and just really had a hard time these pst few weeks. After telling Doc all of this, he decided to start me on 2.5 mg of Midodrine once a day. I go back to see him in 3 weeks to check in with him on the meds. I'm a little nervous! I've never taken anything "serious" like Midodrine before. If I take pills, it's usually a supplement or Ibprofen, so this is new to me lol!

I was also prescribed a prescription dose of Vitamin D (50,000 IU) that they are having me take weekly. My Vitamin D level was at 17....I'm told that's kind of low haha.

Any super important things about Midodrine I should know? I've been searching the forum, and it seems like it works really well for some, and not so much for others. I'm hoping it works for me! These POTS symptoms are just too much.

Gentle hugs to all!

~ Alison ~

[BeforeTheMorning]

Sorry, I don't know about Midodrine. I'm just hoping it works for you and you find some relief from symptoms.

Best Wishes,

Lyla

[writerlymom]

Midodrine only stays in your system for about 4 hours... I take 2.5 mg three times a day, have been doing it for a year. Seems to help with some symptoms. The only caution with it is if you have any tendency toward high blood pressure you shouldn't take it if you're going to be lying down. My BP is low so it's never been an issue. At first I had the goosebumps/chills but that wore off after a while- maybe after a couple of months, when I became more active. I hate taking meds too! Good luck.

[Mermaid]

From what I've read and been told by my doctor, some people need more of it and others do OK on a lower dose. I started at 2.5 and didn't see any benefit but stuck with it as asked to do and am now up to 10mg twice a day and 5mg last dose of the day.

Personally, I didn't see any benefit until I got to 10 mg. My own doctor said that most of his patients take 5- 7.5 mg three times daily.

[DeGenesis]

There's not much to be scared about. Just don't lie down within a few hours of taking it. If it doesn't help, or you can't tolerate the side effects, just move onto something else. There are plenty of options.

[Raisin]

It has helped me a lot. It makes my scalp itch about an hour after I take it. That is a no brainer trade off for me. Hope it helps you!

[lewis]

When took it and it felt like it had tightened the vessels in my heart. got some serious chest pains and heart was pounding so hard. I was very glad it only lasts 4 hours. I took it and was sitting all day so I may try it when I am up and about

[Ctat333]

It seems to work well in the AM. The lightheaded and dizziness go away, but my energy is still low. Once it starts wearing off in the early afternoon however, the symptoms come back. I wish I could take another one haha, but doc's orders are only one a day for right now. Maybe I could call tomorrow and ask if it would be ok to take another dose in the afternoons? Only side effects I have noticed are slight goosebumps when the med kicks in, but other than that, nothing.

[jesse1919]

I've been taking it for years. I have the typical itchy scalp and some trouble urinating at higher doses. It took about 4-5 days to adjust to the initial dose and at each increase. I felt crumby the first couple days as my body adjusted. I think I started at 2.5 mg x 3. I would try to call the dr. office to ask them to increase it to 2-3 times a day if it's working. If you have a home blood pressure monitor and tell them your results, they might be more willing to call in the change to your pharmacy without you having to go in for another appointment - maybe.

[SarahA33]

Hi Alison,

I'm glad that you are able to find something helpful for you. I know how frustrating it is to have to take med's but sometimes we aren't left with much of an option. I was put on Midodrine about a year and 2 months ago and it has been really helpful for me. In the beginning, I experienced some of the symptoms that Jesse and some others on the forum have described.. tingly scalp, goosebumps, and it felt like my hands would fall asleep. It lasted for the first 1-2 weeks and then diminished despite the increase of the dosage. I was started on 5mg 2x a day and now am bumped up to 10mg 3x a day.

Do you have a home BP monitor? I would suggest keeping an eye on your pressure's if you are concerned about a BP spike. Like it was said earlier, it's a short acting medication so it doesn't stay in your system very long. My doctor's main concern was supine hypertension after taking midodrine and then laying down, that's why there is the reccomendation of taking it 4 hours prior to bedtime.

I agree with what Barb posted above also, I didn't find much benefit until I started taking a 10mg dosage and it was changed to 3x a day. I think charting your BP's are going to help your doctor decide if it can be increased or not, they like the data, (I was obsessive about it in the beginning and I initially had some related spikes that PRN clonidine lowered)

Hope you are doing well... how is the midodrine working for you now?

[masumeh]

it it works for you, i think your doctor should up the dosage (in terms of taking it a few times a day rather than just once). you should talk to him/her.

i took midodrine for 2 1/2 years, and it helped me even after i stopped taking it for several more years. my doc said it kind of trains your blood vessels to constrict better, so the benefits last even after the drug is withdrawn.

i did have a lot of side effects and had to stop due to that. it doesn't cure POTS; there are other symptoms that linger and it doesn't address everything. but it worked great for me in terms of getting rid of the dizziness and some of the cognitive problems.

btw, about lying down, i had asked my doc when i read that bit in the pamphlet and he said not to worry at all, that it's a concern for parkinson's patients but not for a patient with my case. i took it and lied down plenty of times without any problem.

[SarahA33]

I did have the problem with my pressures initially spiking supine. I just looked back in my notes and it ranged from 30-123 points systolic over about a 2-4 week period.. Midodrine is pretty powerful stuff. Plus if you are already experiencing pressures of 170/110, you can't afford spiking even higher, however short acting it is. 

Another suggestion is to try to take it maybe 10-15 minutes before getting out of bed in the morning. That works really well for me

[Goschi]

Being in hospital since this morning, a new neurologists finally "dared" to try putting me on midodrine.

Have already taken 2 doses (2,5 mg each) and wondering... What exactely is this med supposed to do?

I actually don't feel anything, not even the adverse effects (no supine hypertension at all, no itchy scalp, no goosebumps, etc. etc.)

Tomorrow morning my doc will ask me, if it "helped". Don't know, what to tell him. I don't feel different, when I am upright, my HR increases to the same amount as it always does, my legs turn beautifully mottled after 1-2 minutes being upright.

So, my question goes to all folks who stated that midodrine has "helped" them - what exactely did it do for you...?

Thanks in advance for any replies and best wishes to everyone from a warm summer evening in Vienna!!

[looneymom]

My son takes Midodrine 3 times a day at a very high dosage . He has low blood pressure and it wears off after 4-5 hours. He did start at the lowest dosage (2.5 3 times a day)but his dosage had to be raised up. Usually you can tell a difference within the first week. I would encourage you to call your doctor if you are noticing improvement.

There are side effects to this medication and Tyler has had a trial period of being off this medication for 6 weeks to see if it was causing some of his strange symptoms. His symptoms remained and his blood pressures kept dropping lower. Once he started back on this medication, his blood pressures started staying up again. Midodrine, salt, and fluids are the only things that help kept his blood pressures up. Because of his high dosage of midodrine, I give it every 5 hours, but sometimes his blood pressure will drop and I have to give him a gram of salt. I still moniter his blood pressures about every 2 hours. I email these to our cardiologist weekly.

[writerlymom]

Goschi, sorry to hear you're in the hospital. : (

When I first started on midodrine it lowered my heart rate and seemed to help a little with brain fog. I took 2.5 mg three times a day. I'm in a flare now and that dosage doesn't seem to be making much difference so my doctors are recommending increasing it. I've tried 5 mg here and there recently but haven't seen much difference... so they're saying go to 7.5 mg. I think it's common for people to need 10 mg three times a day. Hope you're doing better very soon!

[writerlymom]

Midodrine is suppose to help constrict your peripheral blood vessels, putting more blood in circulation in your upper body. Astronauts take it when they return from space and are POTSy.

[Goschi]

Thanks for the fast replies!!

Writerlymom, I am glad to be in hospital - it was planned, and I really like the way they approach my condition in a very serious, interdisciplinary way! F.e. I was told right at the beginning: Well, you have severe Pots, no doubt - we will of course try to treat this symptom (!!!! - thus the midodrine) - but to be honest, we don't care to much about your Pots, we will try very hard to find out, what's REALLY wrong with you and causes all your symptoms!!

Wow... Never heard something like that from a doc since I fell ill 16 months ago...

[writerlymom]

Wow, impressive! Hope they find answers for you. Keep us posted. : )

[Goschi]

Well... Turns out they really try very hard to search for any underlying causes, some rare things no one ever considered before: Morbus Wilson, Morbus Fabry, Chorea Huntington, Multi system Atrophy (scary...).

On the other hand, I learned that they are not really familiar with POTS/dysautonomia. Therefore, they often don't understand my symptoms as typical POTS-related and instead desperately try to find the "cause". A bit frustrating, to be honest...

However, at least the midodrine actually changed "something", can't yet really describe what exactely.

And I learned that I don't tolerate compression stockings at all. They give me a weak and uncomfortable feeling inside my legs (not on the skin!). I was surprised about that result and the docs here actually baffled...

[looneymom]

Goschi

Sounds like they are on the autoimmune track or looking for something gentic. Chorea can be connected to several conditions. Hang in there, it sounds like these doctors want to help find the underlying cause of your POTS. Keep us posted on your results.

Ctat

How are you doing with the midodrine? Did the doctor up your dosage?

[Goschi]

Goschi

Sounds like they are on the autoimmune track or looking for something gentic. Chorea can be connected to several conditions. Hang in there, it sounds like these doctors want to help find the underlying cause of your POTS. Keep us posted on your results.

Ctat

How are you doing with the midodrine? Did the doctor up your dosage?

Well, you are of course right! - I am really glad that they approach my whole condition, I was just a bit disappointed how little experience they have with dysautonomia...

Concerning the midodrine: I take 2,5mg three times a day, it could be upped, depending how I feel on it.

But in fact, I don't really know - I definitely feel "different", no doubt! I feel less fatigue, a bit more "awake" in general. This is certainly very pleasant!! But though this may sound contradictive: I still feel weak, clumsy, heavy etc. when I am upright, though on the other hand, I can walk for longer distances and feel less dizzy. Still don't know what to think about midodrine...

[looneymom]

They may not have too much experience with Dysautonomia as being the only illness in a patient. The symptoms of Dysautonomia can be symptoms of other autoimmune illnesses. I know you probably did not want to deal with anything else on top of dysautonomia but maybe it will go away if they figure out what might be the underlying cause. How many more days are they planning on keeping you?

[Goschi]

They may not have too much experience with Dysautonomia as being the only illness in a patient. The symptoms of Dysautonomia can be symptoms of other autoimmune illnesses. I know you probably did not want to deal with anything else on top of dysautonomia but maybe it will go away if they figure out what might be the underlying cause. How many more days are they planning on keeping you?

Well, in fact I always thought my dysautonomia to be just a symptom on top of my actual disease (whatever it may be). Thus, what they are doing here is exactely my point of view.

And I never wanted anyone to simply treat my Pots-symptoms, I always regarded this to be a strategy that leads nowhere.

But here in this hospital I met docs who were surprised that I feel dizzy when upright and told me "can't be from POTS, this only makes you tachy. The dizziness must be from an other condition."

I will stay here for at least for the whole next week, maybe even longer. I try to make the best of it - and don't expect too much in order to not being too disappointed, just in case.

[looneymom]

Wow! At least you have their attention with your dizzy spells. Keep us posted. Hopefully they will find the cause.

[Goschi]

At least Morbus Fabry is now excluded (for males the resp. blood test is definite).

And I start to like the midodrine more and more! While I am still not sure what it does for me concerning physical activity, it definitely helps with brain fog! As well as in any upright position as being supine! Haven't yet spoken to a doc about it, but anyway this must mean something to, I guess!