Has anyone had Midodrine make them sedated like a sleeping pill?

[EtherSpin]

@Gingergrrl how did you go ?
I am feeling a bit desperate - been on mido since feb, 2 tabs a day initially, now Ive had 2.5 months on a dose of 2 tabs in the morning followed by two (5mg) in the afternoon. I feel chills/colder than normal most of the day, goosebumps and skin crawl most of the day (more than any other normal goosebumps e.g. all over my scalp,visible, covering most of my arms and legs) but what is annoying me, I cannot detect *any* energy boost or any extra sense of strength when standing - I think it takes longer for my heart to start racing but maybe Im feeling generally weaker because I just have a pervasive sense that I cannot go and do something like cook a meal ( I love cooking and until a couple of years ago would whip up 3 dishes concurrently without recipes and loved experimenting) or go outside and do light gardening.

has anyone found that mido has upped general fatigue levels even though it seemed to help (on readings) with hypotension ?

Im worried about being taken off it prematurely - probably cause my doc made it sound so simple and mechanical and implies CFS is this easy to augment in that sense, false hope!

guess I'll see if there are other strategies he will employ but ive already trialled (through other docs) beta blockers and phenylephrine so thats two off the list

 

[Seven7]

@Gingergrrl how did you go ?
I am feeling a bit desperate - been on mido since feb, 2 tabs a day initially, now Ive had 2.5 months on a dose of 2 tabs in the morning followed by two (5mg) in the afternoon. I feel chills/colder than normal most of the day, goosebumps and skin crawl most of the day (more than any other normal goosebumps e.g. all over my scalp,visible, covering most of my arms and legs) but what is annoying me, I cannot detect *any* energy boost or any extra sense of strength when standing - I think it takes longer for my heart to start racing but maybe Im feeling generally weaker because I just have a pervasive sense that I cannot go and do something like cook a meal ( I love cooking and until a couple of years ago would whip up 3 dishes concurrently without recipes and loved experimenting) or go outside and do light gardening.

has anyone found that mido has upped general fatigue levels even though it seemed to help (on readings) with hypotension ?

Im worried about being taken off it prematurely - probably cause my doc made it sound so simple and mechanical and implies CFS is this easy to augment in that sense, false hope!

guess I'll see if there are other strategies he will employ but ive already trialled (through other docs) beta blockers and phenylephrine so thats two off the list

Here is the thing, when first you get midro you use up extra since you are testing new bounderies. If you are fatigued you need to cut down or up the dose. I started at 2.5mg and I over did. Now I am on 20mg 3 times a day ( and i went from bed ridden to walking some. My point when I thoguht I hit the jackpot I was still under medicated

 

[Gingergrrl]

@Gingergrrl how did you go ?

@EtherSpin I assume you mean re: the Midodrine and sedation? I ended up stopping Midodrine although I do not rule out trying it again in the future. It made me incredibly sedated, beyond any med I have ever tried, and it also did not raise my BP at the 2.5 or the 5.0 mg dose but it did give me daily headaches.

I have constant severe shortness of breathe which requires me to use a wheelchair and Midodrine did help my SOB a little but no other benefits and I tried it for a long time. We think it was the oxytocin release that caused the extreme sedation for me (yet with no increase in BP and ironically, Midodrine often lowered my BP which I cannot explain.) Not sure if this helps!

 

[EtherSpin]

Here is the thing, when first you get midro you use up extra since you are testing new bounderies. If you are fatigued you need to cut down or up the dose. I started at 2.5mg and I over did. Now I am on 20mg 3 times a day ( and i went from bed ridden to walking some. My point when I thoguht I hit the jackpot I was still under medicated

I was certainly that way with florinef - my activity levels went up but on mido Im feeling weaker with lower activity levels than any previous winter - I know this because normally there are certain things id be cooking and planting and I cant do either so definitely some weakness - its possible my energy is similar and the side effects are what is throwing me - like the chills,goosebumps and constant feeling of skin crawling/being cold makes prospect of anything seem out of the question ?

@EtherSpin I assume you mean re: the Midodrine and sedation? I ended up stopping Midodrine although I do not rule out trying it again in the future. It made me incredibly sedated, beyond any med I have ever tried, and it also did not raise my BP at the 2.5 or the 5.0 mg dose but it did give me daily headaches.

I have constant severe shortness of breathe which requires me to use a wheelchair and Midodrine did help my SOB a little but no other benefits and I tried it for a long time. We think it was the oxytocin release that caused the extreme sedation for me (yet with no increase in BP and ironically, Midodrine often lowered my BP which I cannot explain.) Not sure if this helps!

Thanks for your input - Ill read up about the oxytocin connection cause my gut feeling is that my cardiologist will discount the fatigue level i report, intriguing about the lowered BP but beyond my brain grade

fingers crossed for you that you still have treatments on the horizon.

 

[Seven7]

@EtherSpin I remember now feeling some head tingling at first. I do feel it when I skip pills for days then take it but overall it went way. If I were in your shoes, I would lower the dose and not to increase the activity and watch what happens. Midro is very short lived, 4h tops. So you can add or stop until you feel best.

You will know by your Blood Preasure when too much (will go high) so increase slowly (I am no doctor and this is what I have learnt works for me personally) and no matter what do not lay flat while on it, if you have to recline remember to lift your head a lot on pillows.

Also monitor your BP while on it, this is vital to understand what is doing. Also if you do salt you might have to adjust the doses (to lower).

 

[mssss]

It's the oxytocin.

Oxytocin is a crucial hormone used for many functions throughout the body. One of the more widely known functions of oxytocin is social bonding, and related to this, it is a crucial hormone used in various aspects of sexual functioning. Oxytocin is what makes people feel calm after sex; it's also what makes some people fall asleep after sex.

You're having the same effects, except that they're caused by midodrine instead of sex. This excess of oxytocin is not doing you any harm, other than making you sleepy. But when this sleepiness makes it difficult to function, that's a problem.

So why is this happening? Why does midodrine work at lower doses and not higher doses for you? (Going back to 2.5 mg should raise your blood pressure back to where it was.) As I've mentioned before, midodrine is an alpha(1) noradrenergic receptor agonist. To understand what this means, consider alpha blockers. Alpha blockers are one class of drugs that are used to reduce hypertension, i.e., reduce blood pressure. Another name for an alpha blocker is an alpha receptor antagonist. Midodrine works on the same receptor, except instead of being an antagonist, it's an agonist of that receptor, which means that it has the opposite effect of an alpha blocker. That's why midodrine is used to raise blood pressure, while an alpha blocker is used to lower it.

Specifically, since midodrine is a noradrenergic receptor agonist, that means that it acts like noradrenaline (more commonly known as norepinephrine in the U.S.) when it binds to that receptor. The stimulated receptor causes the nerve on which it's located to send signals to the muscles to which it's attached to contract. In the case of the alpha(1) receptor, these are smooth muscles, such as those surrounding blood vessels. When they contract, blood pressure rises.

So far, so good. But when midodrine binds to the alpha(1) receptor, oxytocin is also released. Guess what oxytocin does to blood pressure? It lowers it. That's what you've been experiencing with the higher dose of midodrine. Basically, as you've been increasing your midodrine dose, the release of oxytocin has been increasing faster than the main muscle contracting effect of these receptors, and so you're experiencing a net blood pressure drop. What you'd ideally like to do is to find the dosage of midodrine at which the muscle contracting effect has the greatest difference from the hypotensive effect of oxytocin. This point is somewhere around 2.5 mg. It's not clear how much advantage you'd get by trying to refine the dosage; you may just want to stay at 2.5 mg.

Why is this happening to you and not other people? As @Sushi mentioned a while ago, and as you can tell by the responses of various people in this forum, midodrine (like most drugs) has different effects on different people. For you, it appears that your alpha(1) receptors cause more oxytocin release when stimulated than most people's. That's also why one rare side effect of midodrine is somnolence, as I mentioned in another post. A different rare side effect of midodrine is insomnia. That is most easily explained by saying that the people who experience insomnia don't have enough oxytocin released when they're stimulated. Since these are excitatory receptors, without something like oxytocin to reverse their excitatory action, insomnia would naturally follow.

What this comes down to is that it's possible to have your alpha(1) receptors cause either too little or too much oxytocin to be released, and yours are apparently causing too much. As for why that's happening, it's hard to say. It could be genetics, or it could just be another aspect of this disease that's related to hypersensitivity.

In any case, this effect would apply to all alpha(1) receptor agonists, not just midodrine. So if you are to try a different medication to raise your blood pressure, it probably needs to be one with a different mechanism of action, or else you'll most likely get the same effect.


Yes, you could probably call this a paradoxical reaction, since the midodrine is supposed to raise your blood pressure, and instead, higher doses are lowering it.

@zzz I have just googled midodrine and insomnia and your post has been one of the few things to show up! It was very interesting- I was wondering where you got your information? I have tried searching but nothing is as clear cut as your explanation. I started midodrine 5 weeks ago for POTS and it helped me immensely being upright. At 2.5mg for 3 weeks, I was fine but wasn't helping quite enough, went up to 5mg which helped me a lot but after a few days it effected my sleep and then got full blown insomnia for over a week. Tried lowering to 2.5mg again but didn't help. Have now stopped and on prescription sleeping tablets for a few days before hopefully starting the low dose again to see if it resolved. It would be interesting to explore whether a low dose of oxytocin before bed would help me fall asleep if my insomnia returns.

 

[zzz]

I got the information on the relationship between midodrine and oxytocin from Dr. Jay Goldstein's book Tuning the Brain. He in turn got his information about the way alpha(1) agonists cause the release of oxytocin from a paper presented at the 28th Annual Meeting of the Society of Neuroscience, the largest annual neuroscience conference in the world (at least in 1998, when this one was held).

Insomnia is a common side effect of midodrine; it arises essentially because midodrine acts basically like norepinephrine, which is a stimulating neurotransmitter.

Although oxytocin can have a sedating effect, that's not its main use, and it can have many other effects as well. I would recommend reading up on it. One place you can find information on oxytocin use specific to ME/CFS is in the book by Dr. Goldstein I mentioned above, as well as its predecessor, Betrayal by the Brain. For some patients of Dr. Goldstein, oxytocin helped all their ME/CFS symptoms. Dr. Goldstein used 5 to 10 units of oxytocin injected IM once or twice a day. Oxytocin requires a prescription from your doctor.

 

[mssss]

Thank you so much for this, I will do my research before seeing my specialists. Thanks again

 

[Gingergrrl]

@EtherSpin I assume you mean re: the Midodrine and sedation? I ended up stopping Midodrine although I do not rule out trying it again in the future. It made me incredibly sedated, beyond any med I have ever tried, and it also did not raise my BP at the 2.5 or the 5.0 mg dose but it did give me daily headaches.

I have constant severe shortness of breath which requires me to use a wheelchair and Midodrine did help my SOB a little but no other benefits and I tried it for a long time. We think it was the oxytocin release that caused the extreme sedation for me (yet with no increase in BP and ironically, Midodrine often lowered my BP which I cannot explain.) Not sure if this helps!

I am revising what I wrote before for @EtherSpin or anyone else that it might help in the future. I started myself on Midodrine again (I am guessing in beginning of Aug so it's been 1-2 months) and it is the only medication that helps my shortness of breath. My BP is staying in the 90's/60's versus the 80's/50's about 90% of the time and even when it does not raise my BP, it helps my breathing and stamina.

My MCAS doc thinks this is due to "Preferential Perfusion" and that it is allowing more blood to perfuse my lungs and heart (especially when I stand) than when I do not take it. The big drawback for me is that it makes me very sedated but I know this is not the case for everyone. For whatever reason, it no longer gives me headaches as I stated in prior post. I take 2.5 mg 2-3x per day and still trying to perfect the dose.

Hope this helps someone out there.

 

[Tammy]

A friend of mine who has MS takes it for dizziness...............she said sometimes it makes her sedated and at other times seems to gives her some pep.

 

[koco]

Hi all. I began taking midodrine 2.5mgs upon waking and at noon six days ago for orthostatic hypotension and I also experienced extreme somnolence. I found this frustrating because although I felt I desperately needed to lie down and nap, I was unable due to the possible side effect of supine hypertension. (I find it difficult to nap propped up.) I've read all the previous posts and found the information re: oxytocin illuminating. Historically, I tend to be he queen of paradoxical side effects from meds, so I am not surprised to find that this reaction is not typical. Before midodrine, I took florinef but experienced side effects of depression and anxiety which were intolerable (these are typical side effects). To make matters more interesting (the Chinese curse sort of interesting), my doc recently diagnosed mast cell disorder (in addition to CFIDS & other cell-mediated immune deficiency) and prescribed ketotifin 1mg 2X per day and oral cromolyn. I can't sleep at night and want to sleep all day. This isn't working. I know I'm preaching to the choir, but I just felt the urge to vent - what's worse, the side effects of the meds or the disease?????

 

[Jenny TipsforME]

Yes also struggling to stay awake in day on midodrine and now awake when I want to be asleep

 

[Gingergrrl]

Yes also struggling to stay awake in day on midodrine and now awake when I want to be asleep

For some reason, all of the Midodrine stuff that I typed when I started this thread (the sedation, the headaches, etc) have completely gone away for me. I have taken Midodrine off & on since end of 2014 and taking in combination with IVIG has been very helpful for me with no side effects (no idea why) but I still take what would be considered a low dose for most people (2.5 mg 2-3x per day).

 

[Jenny TipsforME]

@Gingergrrl yes that's the same dose as me. But it's kicked in so struggling to keep my eyes open now. I'll be found dosing in a half sitting position for a while...

 

[Gingergrrl]

@Gingergrrl yes that's the same dose as me. But it's kicked in so struggling to keep my eyes open now. I'll be found dosing in a half sitting position for a while...

If it helps you, like it does for me, hopefully the sedation aspect will also go away like it did for me. I remember in the beginning I would take it and literally fall asleep for a few hours vs. now I take it and there is no sedation whatsoever. I have no idea why this changed?!

 

[Pen2]

I'm so glad I found this thread. I have been on Midodrine for about 2 years now. I take 10mg 3x/day. What I didn't see in anyone else's comments is for me, before ME took over I have always been hypertensive.

When my BP drops it drops from 160's to even 170's down to 90's - 115 ish. So I have high BP as my normal. My DR said it is normal for my body to be high, so it's when I'll feel my best. I do have to take Atenolol to keep my diastolic BP normal and my heart rate down.

I do get the chills head and all over once in awhile. It doesn't bother me.
My problem is shortness of breath when my BP is higher like 160's-170's it can even go higher as much as 200's!

I do notice the Mid improved my
energy but not until after the third dose and not always. Depends on how bad my ME is I guess.

Does anyone else have a baseline of hypertension? I feel like from what I've read from everyone, your baselines are hypotension. Hypertension runs in my family so the cardiologists all accept my BP being high. I also take fosinopril for hypotension!

It's a double edged sword for me! I have just followed my Dr's orders.

I would like to hear opinions on this side of taking Midodrine. For me, even though I go to high, I do feel better on it. It scares me to have such high BP sometimes. Supposedly my heart is healthy, but.....my brain is not.

 

[Pen2]

So I thought I would give a today's morning example of my BP.
Reclined: 180/93 pulse 60
Sitting: 189/82 p 61
Standing: 118/70 p 68

So for me the 118 is too low and a drop of 70 & > points!! I don't take Atenolol until noon which helps my diastolic go down and keeps my heart rate lower.

Anyone have any advice or similar BP issues? My BP has always been a worry for me. I stopped taking it all the time now so I don't worry so much about it. I really think my DR is doing the best he can.
What do you all think?

I don't know if Midodrine has ever made me tired. That's hard to say since every day is a struggle with my fatigue.

 

[ahimsa]

So I thought I would give a today's morning example of my BP.
Reclined: 180/93 pulse 60
Sitting: 189/82 p 61
Standing: 118/70 p 68

So for me the 118 is too low and a drop of 70 & > points!! I don't take Atenolol until noon which helps my diastolic go down and keeps my heart rate lower.

Wow, that is a huge change.

I think if my blood pressure went up that high while I was reclined then my cardiologist would worry. I see him once per year just to check out my BP and get my midodrine prescription renewed. He measures my BP lying down, sitting and standing.

To use a different example, my husband is struggling with high blood pressure. We often joke that we wish we could average our BP readings.

My husband once got a systolic measurement over 180 in the doctor's office. The doctors wanted to start him on medicines right away. Since that time he has adjusted his diet (a LOT of arugula, beets, hibiscus tea, and many other items) and exercise. Now his systolic BP range is down to somewhere 120-145 without any meds. He has not gotten a reading over 150 since then.

I am NOT a doctor and have no medical expertise. I'm just relaying my own experiences with what doctors have said to myself and to my husband about BP.

I think a systolic reading of 180+ is usually a cause for concern. However, your doctor has talked with you about it, and seems thinks it's okay, so maybe there are different factors at work in your situation?

By the way, it has been known for quite some time that folks with high resting BP can have a large drop in BP when they stand. A patient can have high BP and still have Neurally Mediated Hypotension (aka NCS and other names). This was mentioned in Dr. Rowe's patient handout on Orthostatic Intolerance - http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

I don't know if Midodrine has ever made me tired. That's hard to say since every day is a struggle with my fatigue.

This may be a minor point but I think the issue is that midodrine makes some people feel sleepy (drowsy). I think that's quite different than the type of sick/exhausted "fatigue" that most folks with ME struggle with.

I hope this makes sense.

 

[Gingergrrl]

Does anyone else have a baseline of hypertension?

Hey Pen, I wanted to reply since I started this thread almost three yrs ago and b/c I also take Atenolol and Midodrine like you. I've never had hypertension and my baseline is hypotension, and would still qualify as hypotension even with Midodrine. I've taken Atenolol every day for 4+ yrs (since POTS diagnosis) but I have been off & on w/the Midodrine b/c it was not always effective in my case.

For some reason, the combination of IVIG and Midodrine has been more effective for me than taking Midodrine alone and now my daily BP is approx 100/70 (vs 80/50 for about 3 yrs, often even with Midodrine). Midodrine used to improve my breathing even in the absence of raising my BP on an arm cuff. I still take Midodrine now but am certain it is one of the meds that I will eventually stop (vs. I will continue w/Atenolol for POTS/tachycardia). Midodrine no longer makes me sedated like when I started this thread and I guess your body eventually acclimates to it (or at least I did). Hoping this helps?!

 

[Pen2]

Hey Pen, I wanted to reply since I started this thread almost three yrs ago and b/c I also take Atenolol and Midodrine like you. I've never had hypertension and my baseline is hypotension, and would still qualify as hypotension even with Midodrine. I've taken Atenolol every day for 4+ yrs (since POTS diagnosis) but I have been off & on w/the Midodrine b/c it was not always effective in my case.

For some reason, the combination of IVIG and Midodrine has been more effective for me than taking Midodrine alone and now my daily BP is approx 100/70 (vs 80/50 for about 3 yrs, often even with Midodrine). Midodrine used to improve my breathing even in the absence of raising my BP on an arm cuff. I still take Midodrine now but am certain it is one of the meds that I will eventually stop (vs. I will continue w/Atenolol for POTS/tachycardia). Midodrine no longer makes me sedated like when I started this thread and I guess your body eventually acclimates to it (or at least I did). Hoping this helps?!

Thanks for your post @Gingergrrl I have been on Fosinopril for probably 17 years since I was diagnosed with hypertension. I was always real active in exercise too. I try to eat right but I'm not going to say I have ever been real devoted with it. Better now than before.

I was told by my DR and cardiologists that my hypertension is hereditary. There are 4 of us in my family with hypertension.

I bring it up every time I have my follow-up which is every 6 months. He assures me I am where I'm going to be.
When I tried to stop midodrine my BP drops so low I am forced to lay down or pass out.

I have never done IVIG. Do you think that I should bring that up to my DR? Is it something used for ME or something else.