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

[Pen2]

Hi @ahimsa thanks for responding. I have really wanted to talk to others about medication treatments since I was diagnosed with ME/CFS with OI. Or neuromediated hypotension.

I do still drop alot when I stand which I questioned whether the Midodrine is actually helping or hurting my BP. It does make my BP higher than my usual baseline which was low 150's before midodrine.



But I feel better since I started it, I will get a boost of energy later in the day.
Like most of us, my DR tried several different meds before midodrine, nothing helped until midodrine which I had to except the high BP.

My follow-up is September 6th. I want to read the link you gave me, maybe find more information and he will listen. We shall see.

Lying down, with my high BP does also make me short of breath so I need to bring that up too.

Yea, fatigue is
different than sleepy.
I was trying to make some point but I don't remember what anymore.
Midodrine doesn't make me tired though.

So right now, this time of day, after my third midodrine, I can stand longer my BP drops less to usually 120's. So I guess that's all I get using midodrine.

Since I started reading PR I have seen alot of new information on treatment for ME symptoms. Very confusing....

I appreciate any feedback.

 

[Pen2]

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


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.

@ahimsa , I looked up the link you gave me. I've read it before. John's Hopkins is who diagnosed me with CFS and OI back in 2000. They were no help, I was told there is no cure and sent on my way. I was treated for depression.

I was so frustrated back then. The article is pretty old too. I think the earliest participant was 2005.

Is there a specific Dr you deal with at Johns Hopkins? Maybe their better now. I hope so.

 

[ahimsa]

@ahimsa , I looked up the link you gave me. I've read it before. John's Hopkins is who diagnosed me with CFS and OI back in 2000. They were no help, I was told there is no cure and sent on my way. I was treated for depression.

I was so frustrated back then. The article is pretty old too. I think the earliest participant was 2005.

Is there a specific Dr you deal with at Johns Hopkins? Maybe their better now. I hope so.

I'm sorry if my post was confusing. That PDF is from Johns Hopkins but I got that link from the Dysautonomia International website. Their home page is here:

http://www.dysautonomiainternational.org

I have never been to Johns Hopkins nor have I ever met Dr Rowe. I included that link since it is often helpful information for folks who need a summary of Orthostatic Intolerance (OI).

I'm so sorry that you got no help from the Johns Hopkins doctors that you saw! I don't have any personal experience with going to their facility (I'm in Oregon).

But I do have one positive experience. Way back in late 1994 I heard from an old high school friend. She was in one of those first Johns Hopkins studies that showed many patients with a CFS diagnosis also have some form of Orthostatic Intolerance. She suggested that I try to get into one of those studies.

I filled out the forms and mailed them in. Then I got a call from Dr. Bou-Holaigah, one of the Hopkins doctors running that early study. He said the study was full but from the answers on my form it looked like I probably had a OI. He suggested I try to find a cardiologist locally and get a tilt table test.

At that point I had had a few nice doctors and a lot of bad ones. So I thought it was pretty amazing that he was taking the time to call all these patients, spread all across the USA, individually. He could have just sent out postcards saying, "Sorry, our study is full" or something like that.

I had a tilt table test in Jan 1995, done by a local cardiologist. My BP plummeted and I passed out. I started treatment for NMH at that point.

I'm sure not all the doctors are Johns Hopkins are good. And I'm so sorry that you got no treatment at all.

That is just wrong because "no cure" does not mean "no treatment." After all, there's currently no cure for HIV-AIDS and yet many people live much longer lives with treatment than they did 30-35 years ago with no treatment.

I hope this is not too rambling. Sorry that I can't offer any specific advice. Treatment for NMH is easier if the baseline BP is low. It's seems much trickier when the baseline BP is high.

Again, just a patient, I have no medical expertise.

 

[Gingergrrl]

When I tried to stop midodrine my BP drops so low I am forced to lay down or pass out.

Your situation is different than mine since you have both hypertension, and hypotension when you stand, vs. I have hypotension pretty much 24/7. I would try to get a clear answer from your doctor re: how to proceed in this situation. I first tested Midodrine while in the hospital in 2014 (for another reason) and my cardiologist said that I am safe to lie down after taking Midodrine (whereas some people are not) b/c there is no scenario in my case that it would raise my BP too high. But for most people, you would not lie down after taking Midodrine.

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.

I would not bring it up if the reason is for BP. I do IVIG for another reason but have noticed that in the 13 months of doing it, my BP stays higher and the Midodrine is more effective than prior to IVIG. I am not totally certain why this has been the case for me.

 

[Pen2]

Hi @ahimsa , your right, that was really nice for the doctor from Johns Hopkins to act call you!

When I went there, I was really sick, my primary DR had run out of what to do with me so she referred me there. I just saw an internal medicine doc so I have not seen any that specialize in ME & OI there.

She was pretty cruel though. I left knowing nothing about what I was dealing with. So I took 2 months off of work, went back and I struggled for over 16years not knowing what the heck was wrong with me.

Anyways she could have given me a hand out or something. Oh well. I'm sure a specialist would have been better.

She did not want to put me on medication for my OI because of my BP being high when sitting & lying down. I do remember that.

I would go back if it was an ME OI specialist. I do think my doc is really trying his best. I know he's educated himself on this.

I'm going to ask him if he has heard of PR.

Hope you're doing good today. Thank you so much for your feedback.

 

[Pen2]

Hi @Gingergrrl , you know what? I never knew that you shouldn't lie down if you take midodrine. That is a very interesting and helpful point.

I am always short of breath when I lay down flat and reclining in my chair during the day! If I start to dose off my shortness of breath jolts me awake!

So at night, around 1100pm-1200am when the midodrine has mostly worn off I'm not short of breath and go to bed.

Hmmmm :thumbdown:. Thank you for that!
You are all the best.....honestly. sharing our experiences is amazingly helpful.

I'm anxious to talk to my doc next week now.

He does have a challenge with me being hypertensive instead of hypotensive. Poor guy . He's a great doc, he really is. He is not hesitant to send me out for another evaluation or whatever.

Hope you're having a good as can be day!

 

[Jenny TipsforME]

@Gingergrrl how long did you take midodrine before the sleepiness stopped? I just don't feel I'm getting any benefit unless it's a day of very hot weather.

 

[Gingergrrl]

Hi @Gingergrrl , you know what? I never knew that you shouldn't lie down if you take midodrine. That is a very interesting and helpful point.

I'm so glad I happened to mention it and the risk with Midodrine (for many people but not for me per my cardiologist) is that if you lie down, it can spike your BP very high and increase intracranial pressure and become very dangerous. In my case, when I started Midodrine my BP was 80/50 every day and Midodrine improved my breathing a little but did not raise my BP on an arm cuff. And when it did (at that time) the most was to the 90's/60's and made no difference whether I was sitting, standing, or lying flat.

My cardio determined that as much as he'd hoped the Midodrine would raise my systolic BP to 115 or even 120 it just was never going to ever happen so I was safe to lie down, or in theory, even take a nap after taking it (but for others this could be very dangerous). Now with the IVIG my normal BP is 100/70 and I have not seen the systolic go into the 80's in over one year which has been great b/c I can feel the difference.

Hmmmm :thumbdown:. Thank you for that! You are all the best.....honestly. sharing our experiences is amazingly helpful.

No problem and glad I could help!

@Gingergrrl how long did you take midodrine before the sleepiness stopped? I just don't feel I'm getting any benefit unless it's a day of very hot weather.

It's a great question and I am not sure b/c I have tried Midodrine at so many different doses and stopped and re-started it many different times. I also lost all of my notebooks to mold where I used to track this info. But the sedation from Midodrine completely 100% stopped and is no longer an issue. For whatever reason, it works more effectively for me in combination with my ongoing IVIG so I am continuing to take it for now. Sorry, I wish that was more helpful of an answer!

 

[Pen2]

Actually @Gingergrrl you and @ahimsa have been very helpful. Obviously the midodrine is not working for me if my BP is still dropping 70 points..right?! The only thing it does is by late afternoon my systolic is in the 120's... better so I can stand for longer periods.

That's as long as I'm not in an exacerbation of ME. Next week I'm going to discuss all this with my DR.
I just have to get all my ducks in a row.. I'll be curious what he will say about IVIG.

Thank you lots.

 

[Gingergrrl]

. I'll be curious what he will say about IVIG.

I wanted to clarify that I don't do IVIG for any BP issue and in general it is done for immune deficiency or autoimmunity after one of these is found on testing combined with clinical history and symptoms. For me, the IVIG raises and maintains my BP around 100/70 (vs. 80/50 like it was for years) but this is an added bonus and is not the reason I am doing it.

 

[Pen2]

I wanted to clarify that I don't do IVIG for any BP issue and in general it is done for immune deficiency or autoimmunity after one of these is found on testing combined with clinical history and symptoms. For me, the IVIG raises and maintains my BP around 100/70 (vs. 80/50 like it was for years) but this is an added bonus and is not the reason I am doing it.

Yea, @Gingergrrl thanks. I figured that so I looked at my blood work from 6 months ago. I don't think it would benefit me. My autoimmune numbers are ok.
I still want to talk to him about the midodrine, ill keep you posted.

 

[Pen2]

So I went to my follow-up appointment with my Doctor. He still sticks by his treating my OI with midodrine.

He feels that as long as I don't have plaque problems with my heart valves, ( which I don't) that having high BP has been proven in studies to be safe for treatment of OI.

Since I have a baseline of high BP, ( before getting sicker with ME) I am fine.

I have to say, this visit I felt like he was just talking but not listening. I left feeling like the visit was kind of a waist of time.....and energy.

So I continue on medication for high and low BP. Which I'm sure isn't easy to treat.

I do wish Doctors would listen more. I know I'm not alone.

 

[Jenny TipsforME]

@Gingergrrl ive given up on midodrine and gone onto fludrocortisone. Fingers firmly crossed!

 

[Gingergrrl]

So I went to my follow-up appointment with my Doctor. He still sticks by his treating my OI with midodrine.

@Pen2 How frustrating and I hope your situation with the Midodrine is eventually straightened out and you find a solution that works.

@Gingergrrl ive given up on midodrine and gone onto fludrocortisone. Fingers firmly crossed!

Best wishes also to you, Jenny, with trying the Florinef. I had a horrible time when I tried Florinef in 2014 but we are all so different. I recently took a break from Midodrine (won't bore you w/the details!) but I could really tell the difference and am dramatically better being back on the Midodrine again. I'm not sure why Midodrine consistently helps me to breathe and function better.

 

[Replenished]

Very interesting thread. I appreciate this is an old thread now but I wondered if anyone might be able to answer this question; There's some mention of Midodrine increasing Oxytocin in this thread. As far as I'm aware Oxytocin comes from the posterior pituitary gland where only one other hormone in Vasopressin also comes from. I'm wondering if there's any relation and if Midodrine increases Oxytocin, if it might also increase Vasopressin?

I am due to start midodrine for some low blood volume, blood pooling, POTS like symptoms. I always feel dehydrated and thirsty, possibly because of these issues and if Midodrine was also to increase Vasopressin that might be an additional benefit. To note, I've felt very detached/numb/low and unable to feel love/bond in relationships since becoming unwell so an increase in Oxytocin might also do me good. Maybe i'm low in Oxytocin anyway.

@zzz @PNR2008 @Gingergrrl @Pen2

 

[Alvin2]

Very interesting thread. I appreciate this is an old thread now but I wondered if anyone might be able to answer this question; There's some mention of Midodrine increasing Oxytocin in this thread. As far as I'm aware Oxytocin comes from the posterior pituitary gland where only one other hormone in Vasopressin also comes from. I'm wondering if there's any relation and if Midodrine increases Oxytocin, if it might also increase Vasopressin.

I am due to start midodrine for some low blood volume, blood pooling, POTS like symptoms. I always feel dehydrated and thirsty, possibly because of these issues and if Midodrine was also to increase Vasopressin that might be an additional benefit. To note, I've felt very detached/numb/low and unable to feel love/bond in relationships since becoming unwell so an increase in Oxytocin might also do me good. Maybe i'm low in Oxytocin anyway.

@zzz @PNR2008 @Gingergrrl @Pen2

I had tried an Oxytocin nasal spray, no ME effect.
I wonder if thats still around.

 

[Gingergrrl]

As far as I'm aware Oxytocin comes from the posterior pituitary gland where only one other hormone in Vasopressin also comes from. I'm wondering if there's any relation and if Midodrine increases Oxytocin, if it might also increase Vasopressin?

@zzz @PNR2008 @Gingergrrl @Pen2

I apologize that I don't know the answer! I stopped taking Midodrine several years ago (maybe 2017 or 2018)?

 

[Replenished]

I apologize that I don't know the answer! I stopped taking Midodrine several years ago (maybe 2017 or 2018)?

Why did you stop taking it? Did it not help?

 

[Gingergrrl]

Why did you stop taking it? Did it not help?

I don't remember the specifics of why I stopped it but overall I didn't need it any more once the IVIG normalized my blood pressure & heart rate on it's own. The core of my issues were autoimmune and Midodrine (and a ton of other meds) were like a partial band-aid but did not get to my core problems like IVIG & Rituximab did.

 

[PNR2008]

I am still on midodrine. I can't get through summer or great changes in weather without it. My BP tanks and I still get pre-syncopy and syncopy.