Experiences when first starting Midodrine?

[vbc2000]

Hi all,
I think I made a mistake by starting Midodrine while I have a sinus infection.  I've been in bed sick for the past 3 days and decided I needed to try going to work today AND start Midodrine this morning.  I should have know getting back to work alone while not feeling 100% was a challenge enough.

After the first dose this morning at 6am, around 7am I got really dizzy.  I know when you start any medication, you might have side effects that might not persist.  I'm going to try it again when I'm feeling better and when I'm off on the weekend.

I'd like to know if anyone has had persistant dizziness on Midodrine...and what your general experience was when starting it.  I thought it was prescribed to PREVENT dizziness, not cause it!  Any thoughts would be appreciated.  I don't want to give up on it...I can't live with that dizziness if it persists though.  Thanks,
Stephanie

[vbc2000]

Well I've been home for the last few days because my husband's step-father passed away, and it gave me a chance yesterday to try the Midodrine again.  I was home and wasn't really in any danger of having any "episodes" but my main reason for taking it was to see if I got the dizziness again...and I didn't!  Yay :)  So I'm going to try it during my day today again.  I have to try to find a dress for an upcoming wedding and I usually have issues when I'm shopping because I'm standing for an extended period of time.  

I know you're not supposed to lay down while taking it which leads me to a few questions.  I live to nap :)  After work I also watch tv in a laying down position.  I layed down after about 2 1/2 hours after taking it yesterday and took my BP.  The readings were 100/60 then 110/80 which my EMT hubby said was still fine.  I did feel some pressure in my head which I didn't like so I'm going to try to avoid laying down while on it when I can.  Anyway...my questions are:

1.  Since Midodrine is so short acting, do some of you take it only when you think you'll need it, like when you will be most active?  If I'm home and relaxing, I don't have alot of symptoms and if I do, I just go lay down.  I'm thinking I might not need to take it all the time?

2.  I've seen some of you all with POTS say you take Midodrine round the clock...including having to wake up and take it in the middle of the night.  Is that because of the tachycardia part of your condidtion?  I believe I was put on it for my low BP and the NCS reaction that occurs at time.  Please forgive my ignorance if it's showing - I'm still very new to all this.
Stephanie

[vbc2000]

Hi Tonya,
Thank you also for responding.  I'm afraid I'm in for a long period of trial and error, having just been diagnosed :(  It's tough when you just want to feel better but I'm sure you know that.  I have depression issues already and this is all really getting to me.  How do you deal with the feeling of hopelessness and the chronic nature of it all?

I'm going to give it another try this weekend and see how it goes.  Can I also ask you if you have a Neurologist?  I'm hoping the Cardiologist can get a handle on it but I know I might need a Neurologist at some point too.
Thanks again,
Stephanie

[vbc2000]

Hi globalhiking,
Thanks for your reply.  I'm on antibiotics too for the sinus infection so I really should have known better.  From now on I'm going to start new meds on weekends only when I don't have to worry about work.

As you are probably well aware from your own schedule, I have worked out a daily schedule of eating, activity and meds that has worked well enough and the dizziness was unusual for that time of morning.  My BP before any treatment was routinely 90/60 and I know it dipped lower than that.  In case I didn't mention it before I have NCS.  Since being on 1g of salt per day and 20mg of Nadolol, it's consistantly up to 100/70.  I can't stand how tired I am on the Nadolol though so we're trying the Midodrine.  

It's good to know dizziness doesn't seem to be a common side effect...that makes me feel a little better about trying it again.  I'm glad to hear it has worked for you in the past and I hope the increased dose gets you back to where you want to be.  Do you have a Neurologist too?  I'm kind of afraid to get too many opinions on what to do...I'm thinking of sticking with the Cardiologist for the time being.

Thanks again for responding!
Stephanie

[tonyad]

  Hey there :)

   I too agree that starting a new med is a trial and error period along w/ some getting used to. So perhaps, like you said, starting it while having the sinus infection may have either been a coincidence that you had the dizziness or maybe from not necessarily the medication but from your B/P.

   It is not uncommon to have to adjust the mediciation when first starting out or even discontinue it and try another.  It is the fun of having AD...NOT!  Lol

I hope you start to feel better and if you continue to feel dizzy  you should let your Doc know.  Next time it happens, try and remember to take your B/P to see whats going on.

Keep us updated,
~Tonya

[globalhiking]

Hi there :-)

Yes, maybe you were not ready to start the Midodrine in the middle of a sinus infection :-)
Wait until a few days after the infection has subsided before starting it again, and be sure to be well hydrated, and start at a low dosage for a week.

The diziness might be caused by the dysautonomia itself, or a low BP (do you take your BP when you feel dizzy?), or your sinus infection.

The usual side effects are: supine hypertention, pruritus (itchy skin), tingling of scalp, piloerection (goosebumps), headache, chills.

I understand that Midodrine is not prescribed to prevent the dizziness itself, but rather boost low BP and decrease the tachycardia by squeezing the blood vessels to bring more blood back to the heart and therefore the brain.
As a secondary benefit it might improve one's dizziness if it boost your BP.

So far I have tried 5 different drugs and the Midodrine is the only one that had some kind of effect on my POTS.
When I started it 11 months ago, it brought down my higher HRs from the upper 150's- 160 to the 140's (so not enough to resume normal programming though!), but lately it seems to have lost its efficacy as my higher HRs have gone back to the 160's.
My cardiologist has given me the ok to bump-up my dosage to every 6 hours.
My side effects have been minimal - just the tingling sensation, itchy scalp and goosebumps - so nothing dramatic.

Keep us posted on how you doing when you restart it.

:-)