Pyridostigmine (mestinon) and midodrine lower blood pressure

[JuliaMaple]

Hey there everyone,

I am pretty new here, but hope that its ok that I ask my weird/complicated question here. It is about my problems with low blood pressure and the medications that we (me and my neurologist) are trying. At the moment I only have fludrocortison as a standard medciation that works, I take it three times a day (62,5). 
My most obvious problems at the moment are:
- Low blood pressure, we can't get it to go up most of the time
- Very narrow pulse pressure
- POTS
- Combined with bradycardia when sitting/resting.
- and often orthostatic hypotension. I got diagnosed with POTS, but that is just what happened during the tilt table test, at home I have seen my blood pressure dropping as well, so I think I appear to have both. 

The diagnosis is POTS, but the doctor is still unsure, and does not say a lot about what causes my problems. So its still a search. 

I take Fludrocortison, which has made my blood pressure generally a bit higher, and the pulse pressure (which was really narrow) has widened. Pulse pressure is now good, but blood pressure stays too low and I still have lots of symptoms because of that. Heart rate is still low as well.

Now here comes my question:
We tried midodrine to upp the blood pressure, which gave a really odd result. It lowered my blood pressure. The doctor did not believe that it lowered my blood pressure, but I have seen it lots of times. I measured every day. It went lower, without a doubt. Also my supine systolic pressure went down about 10 points.
Can anyone explain this? Did others experience this effect? What mechanism causes it?

My second question is:
We tried Mestinon (pyridostigmine) after that. I am still in the middle of that trail, I take 120 mg in the morning. It is supposed to make symtoms like weakness etc less, and it should make orthostatic hypotension less. But, again.. it got worse. I did a couple of standing tests at home, 1 hour after taking mestinon. My orthostatic hypotension is now more dramatic. My blood pressure lowers more quickly, and more severe. I cannot stand for 4 minutes now. The last time I measured while standing 4 minutes my bp was 67/37 (heart 72) which meant a fainting episode. 
Can anyone explain this? Normally this drug makes orthostatic blood pressure better, but when I take it, it makes it worse, like with midodrine.
Mestinon also makes me dramaticly drowsy, I feel stoned (without the happy part), and sleepy, dizzy and vague. Even more then usual. It lowers my heart rate as well. 

Does anyone have any thoughts about how a vasoconstricting effect, can 'lower' blood pressure. I cannot find any logic in that, and understand why the doctor did not believe it. I have seen it many times though, so I am sure that this is what it did. I was thinking that the solution to that might give insight to my real problem. The real issue that causes my blood pressure to be so weak. 

Sorry for the long post. I have a hard time explaining it with less words  and maybe I am a bit desperate.

 

 

[SarahA33]

Hi, JuliaMaple, welcome to DINET!

I don't have any experience with Mestinon, sorry. I did want to let you know that I've had paradoxical effects from blood pressure meds. This was most evident in Lebetalol,  on the max dose and soared with pressures in the low 200's after taking it. This was in the very beginning and without a diagnosis, but I think the doctor I had at the time didn't believe I was being compliant with the medication or taking it properly, so I spent 4 hours at his office taking 2 doses and he saw it for himself.  Have you had your electrolytes checked, like sodium, potassium (florinef can lower this)? Also, there is a newer medication that was approved by the FDA, called Northera (Droxidopa), that is approved for orthostatic hypotension. Unlike Midodrine, which does not cross the blood brain barrier, Northera does and therefore is considered more potent and long lasting.

Midodrine is an adrenergic agonist so it basically works by stimulating receptors that adrenaline work from.. have you had your Norepinephrine/Adrenaline levels checked? Perhaps there could be a clue there.  Have you used an online drug interaction checker to make sure there aren't any interactions occurring? Sorry I could not be more helpful. This condition can be grueling and requires a lot of trial and error with medications, as a one size fits all doesn't seem to exist in this scenario. I hope you can find something that works best for you.

[Guest KiminOrlando]

I tried both of those meds with no results either. I didn't track my BP as closely back then, so I can't give you correlating data. I have heard it isn't uncommon though. I started Northera in March and have had significantly positive results. BP can, at times, be normal-ish. Heart rate, however, is another story, but I will take what I can get when I can get it. Northera isn't an option for everybody. I also read about another drug in Phase 2 trials right now, so there may be hope in the future if your doctor doesn't think Northera is for you. 

Keep up the good fight. Eventually, I believe we all will find something that will help us, even if it is only incrementally. Every little bit helps.

[targs66]

I've also had blood pressure and heart rate lowering effects from medications that were supposed to have the opposite effects, but that tends to occur for me after a brief time delay.  I found that with both midodrine and Ritalin I have a brief surge of raised blood pressure, which is what I am aiming for, followed very quickly (within a few hours) of severely dipping BP and HR.  It's almost as if my body uses up its scant energy reserves for the initial surge and then is so depleted that it can't sustain them.  Of course, that is my own very unscientific theory and I am happy if someone debunks it with more solid information!

I hope you can find a medication that works for you.  Keep us posted.

[JuliaMaple]

Before I reply to everyone I will give a small update about the Mestinon.
Its negative effect seemed to lessen the last few days, I had started taking it in the early evenings instead of the mornings, so that the side effects would not mess with my day too much. Today though, I started to slowly move it to an earlier spot on the day again because that is what the bottle says I should be doing (taking it in the morning). 
Today it gave me side effects again, one was a bit scary. The sides of the tongue became very numb and sedated. When I spoke, I could not pronounce words normally because my tongue did not move right. Kind of partly paralyzed on the sides. I also had a numb feeling in my throat and lips. I was a bit afraid that they would swell, it felt as if my tongue was thick. Not sure if it really was, but it felt that way. 
It slowly wore off after a while. So, I am better now. But tomorrow I have to take it again and I a bit worried about doing that. 
---
@SarahA33 Thanks for your reply!
It seems that I do have a lot of paradoxical effects when it comes to blood pressure medications. I wonder how and why that happens. Wish the doctor would be a bit more open and explain to me what he is thinking.
My electrolytes where checked, and they where alright (two weeks ago). Adrenaline/norepinephrine where not checked, I wish they would, because I have wondered about that often. Also about cortisol.
Northera sounds really interesting! I will see if I can find out if we have it here in my country as well. I wonder if that one could work.
Your reply is very helpful! No need (at all) to say sorry for trying to help. Your post was very informative! And it definitely also helps when people think with me together. It gives more insight. 

@KiminOrlandoThank you for your answer :). Like Sarah you also mention Northera in a positive light, it sounds even more interesting now. I will mention if to my doctor if he is open to suggestions/ideas like that. 
I do hope I will find something that helps. It especially depends on how long the doctor is willing to try, and how many ideas he has. If he gives up, I would not know where else to go anymore. He is a good one, so I am always scared of the day where he will give up on me. 

@targs66 Thanks for your reply as well. That sounds like it could make sense when it is tied to adrenal problems. But not sure of course. As if your body can create the surge that is needed, when medication is pushing for it, but cannot sustain at all. Do you also have low blood pressure and low heart rate? (if I may ask).

[targs66]

Hi again @JuliaMaple

Yes, I do have low BP.  My BP is very low in the AM (80/60) but improves through the day, generally up to about 105/65 at night.  My heart rate tends to surge and dip.  

Coincidentally I just saw a doc the other day, and when I described this phenomenon - that I seem to suffer worse symptoms after anything that raises my BP or HR - he said that he never agreed with the "stimulant" approach because he felt that "you can't create energy from nothing," which I thought was a clear way of explaining things!  Unfortunately, it doesn't help in our search for something to improve symptoms.

I hope you are having better luck solving the medication puzzle!  Keep us posted.

all the best.