Midodrine/florinef bringing hr too low maybe?

[Madisonjan7]

I’m 18 and 110 pounds. I’m on florinef and midodrine to bring my hr down and my bp up, I’m not in shape at all, when I say I live a sedentary life I mean it! I have NEVER seen my hr this low so it’s scary for me. It goes down to low 60s/high 50s and when standing is 70-80s. I was just wondering is this too low? I take florinef twice a day 0.1 mg and midodrine 3 times a day 5 mg. Should I half any of my doses or quit one? 

[yogini]

Midodrine and floirnef affect blood pressure.  What was your BP before you started taking them and what is it now?  IF you BP increases, it often causes the heart rate to be lowered.  So I think the first and most important thing is to make sure your BP is in the normal range.  And my other questions would be how are you feeling on these meds? Did your symptoms get better?  And what was your HR before you started taking them?  I would talk to your doctor before changing any doses.

[Madisonjan7]

@yogini My BP before the meds was lying 85/50, sitting 90/60, and standing 105/65. My HR before the meds was lying 85, sitting 90-100, standing 110-120 and sometimes higher. On the meds BP is lying 90/60, sitting 108/65, and standing it sometimes is only 110/70 and sometimes it’ll go as high as 130/85. My HR on the meds is lying 50-60, sitting 60-70, standing 80-100. Before the meds I would get dizzy often and sometimes feel like I could pass out. Now on the meds I sometimes feel dizzy but usually not. I have headaches more often on the meds.

[Guest KiminOrlando]

@Madisonjan7 Based on what you are saying, your numbers look ok to me, but I'm not a doctor. What I do for my doctor is keep a little spiral notebook full of readings like this every day, morning, afternoon and night. He reviews it at my appointments so he can telk how the meds are working. Keep a log of when you wake up, eat, take meds, so they can figure it out. You are doing the right things.

Remember how I told you I couldn't take Midodrine? It was because it caused unbearable headaches in me. Try to stay on it for 2 weeks. Call your doc and tell him you need to go off because of headaches, if you can't take it. If the headaches go away within 48 hours of going off the med, it was probably the med.

All this is part of the process. None of it is fun. 

Kim

[Madisonjan7]

@KiminOrlando okay thank you!!

[yogini]

It sounds like your regimen is at least somewhat helping with your POTS symptoms since you are feeling better.   That is good news.

Headaches are  a symptom of dysautonmia but it is interesting to me that you say you have headaches on the meds. Florinef can also cause headaches (very common), and so can midodrine, so can high blood pressure.

So you have headaches while on the meds, your HR is going a little lower and your BP is sometimes higher - over 120/80. It is probably important to keep monitoring your BP.   I wonder, for example, if your headaches happen when you have higher BP.   It is important to discuss all of this with your doctor as he can help think through your symptoms and dosing.  

 

Edited October 29, 2017 by yogini

[Madisonjan7]

@yogini @KiminOrlando can these meds cause brain fog? Or is it my anxiety making me think I have brain fog?

[Guest KiminOrlando]

Good question. I'm on so many meds, I don't know what is causing it! It could just be low O2 to the brain. It could be, who knows.... 

Maybe someone on less meds can help with this answer.

[Guest ANCY]

I also get daily headaches from midodrine. For me the symptoms that it helps me control are Worse than a headache so I choose to continue with the medication. It is nice knowing what's the culprit. I get Worse headaches if my bp is up over 155/110 and also get migraines frequently, we are not sure what causes them at this point. 

Consulting your Dr about trying different doses, halfing it ECT, may not be a bad idea. It can be a process trying to find what works for you as symptoms management is very individual. 

[Weyland]

Your hr numbers look great ,especially for someone with pots. I wish my numbers were like yours. From what my doctors tell me ,it's really about how you are feeling and not the numbers....if your hr is lower but you feel fine ,its no problem ....

[yogini]

Brain fog is a common symptom of POTS.  I am not sure whether it is also a side effect of the meds, but you should be able to google the side effects.