Better Off Midodrine???

[Anoj]

i have been on midodrine and florinef since nov. 2010. recently i have discontinued both drugs in preparation for medical testing. since discontinuing, i've improved in some areas and declined in others.

WORSE: Dizziness, weakness, shortness of breath, nausea

BETTER: Less "excited," able to travel without blood pressure spikes, not as sensitive to stimulation.

one of the biggest problems i've had since dysautonomia is extreme sensitivity to motion or sound. when traveling in a car, about 20 minutes in, i would start feeling faint, like i was going to "lose it." one time i brought a blood pressure cuff to see what was happening. to my surprise, my blood pressure and heart rate had spiked, not fallen - but i still felt like i was going to faint. during these episodes of increased stimulation (whether via car or noise), i felt the "midodrine scalp tingling," which was abnormal considering the tingling as a side effect had virtually gone away long ago. it seemed like any overstimulation would "excite" whatever the midodrine was doing.

while on midodrine, sometimes i just felt like any little movement was going to set me off or cause pre-syncope. for example, when i would drive to work and park in the parking garage, i would have to sit in my car for 10 minutes or so to let my body calm down. the vibrations of cars driving in the garage were setting me off. i don't know if that was related to the midodrine, but after my successful car ride today, it kinda seems like it. in the past, traveling was a nightmare.

i'm actually sort of excited about this new development, as i feel that possibly discontinuing the midodrine might solve some of my problems. (i think i'd like to resume florinef, but i'll discuss this with the doctor.)

i guess my questions are:

1. can midodrine make you sensitive to stimulation?
   
2. can you feel faint from a high blood pressure spike? can you faint with high blood pressure?
   
3. does midodrine cause intercranial pressure? during these episodes, i always felt like my head was "full." can this also cause a pre-syncope feeling?
   
4. can midodrine cause your blood vessels to squeeze too tightly, blocking circulation to the brain and then causing fainting? i've noticed fainting listed as a side effect on the drug info!
   

i know these are very specific questions, quite possibly more appropriate for a medical professional. however, i thought maybe some of you might have some ideas.

when the doc told me i'd have to get off my meds before the tests, i was apprehensive and scared, but so far it's not as bad as i thought! TTT is on tuesday, so i should also have a more proper diagnosis. i have never been diagnosed with a specific form of dysautonomia, just "dysautonomic syndrome."

another big question is when do you know it's time to gett off of a drug? i thought my body would just tell me, but apparently not. i saw another post about when you know it's time to get off of an SSRI, and i think it's an interesting topic. i was just cruising along without any plans to change my routine!

thanks in advance for your replies.

[WyomingGal]

I would love answers on all of these things, I feel a lot of those too. High blood pressure makes me feel worse too, but how do I know it's high or is it getting low? : ) I struggle with dizziness too and midi fine can cause that. I have been on it for almost 3 years.

[Sif]

My blood pressure goes down for a few hours after taking my Midodrine. I thought maybe my BP just happened to dip at the same time I'd started taking it but as I've been laying down a lot lately I haven't been taking it.. and my BP is the best it's ever been. Not sure how I'm going to explain that to my cardio without him rolling his eyes at me or something..

[Hoosierfan]

Anoj, I can tell you that when I would increase my Florinef dose, and my bp would spike, I would feel super jittery and lightheaded. Measured bp and it would be 125/75+ (super high for me). So, I don't get it either, but for some reason I think that high bp can make you feel lightheaded. That's been my experience.

[s-pot]

I cannot answer all your questions just know that i am currently experiencing something similar to what you have said!

Ive Discontinued Midodrine and reducing lexapro at the moment for further testing also. There are defo pluses and minus's to it.

I know i definately don't feel any worse without the meds but not better either.... Just different symptoms to be dealing with daily.

Less migraines/brain pressure feeling, 'dips', dizziness...but more of my main presyncope symptom (vomiting/dry wretching) and tachycardia is bad again. Also the fatigue is worse in some ways...its more constant. Saying that, I found the midodrine gave me a great rush of energy but the dip after 3hours was extreme! Definately not missing that part!

Your question about how do you know when its time to get off them....i don't kno! But im hoping that for me the next couple of weeks will tell me whether im worse on or off them! POTS is so changeable and I know in the past when i came off them for a short while and didnt feel too bad it all caught up with me later and i ended up in hospital!

I hope someone here mite have clearer answers to your questions, im not much help but i am experiencing the same thing!

[Guest Alex]

Anoj,

I've only been on midodrine for 2-3 weeks, so I don't think I can help you with the questions about it.

When it comes to feeling "like fainting" - I've had that only to discover that my BP was higher than my norm.

To the best of my knowledge you cannot faint with high BP, but you can definitely feel faint - I know I do.

In terms of the "tingly scalp" - I skipped my florinef one day when my BP was quite high, and I got pins and needles/tingling all over my body but I am not 100% sure of the reason I got them. Could it be that discontinuing the florinef is the reason for some of your reactions?!

As far as SSRIs - I tried celexa, it did not work at all for me - horrible side effects, so less than a week after I started it my dr decided I should discontinue using it. If I were to have listened to my body, I'd have discontinued it after 2 days, as soon as I started having side effects.

Just an idea - ask your dr or pharmacist - they might be able to have better answers for you.

All the best.

Alex

[ramakentesh]

some have increased vasoconstriction or hypovolumia, both of which midodrine may not help and could potentially made worse.

[jenglynn]

I've taken Midodrine since Oct. I take 15mg 3-4x a day (depending if I'm an early riser). I started at 2.5 and getting ready to be switched to 20 mg at the beginning of May. I get a LOT of side effects- in fact just about all of them. Feel freezing, colds tingly- tingly all over- especially my scalp.im very used to these Abd don't bother like they used to. I've always of of "THOSE" dreaded people to work who are wrapped up (not currently working). I didn't really notice the cold until about 5mg-and them much stronger at 10m and no real change going up to 15mg. As far as my BP it increases- higher the dosage then the higher the BP- one drug I take where I can pretty well predict its outcome.

Alex, I'm glad you seem to be having a positive reaction. I hope it continues beside the icky side effects, I don't love them either, but taking Midodrine "helps" me get through the day. I'm always so hesitant to make such a statement on a message board- because so often WWIII breaks out... But I must dispute the statement in MY situation (and we all different- so maybe I'm the only one) which says that you cannot faint on Midodrine. You can feel faint but not fully faint. I have autoimmune mediated autonomic neuropathy.. and at my worst before I was "sick enough i guess" - too many concussions at 9- no more walking. So when I have to be out and about- mainly appointmentsout- I'm in a wheelchair but I even have trouble and will faint while sitting.... SO outside we use the wheelchair- inside- we crawl- ( what is this WE??? I CRAWL) everyone except for me and my poor knees think its quite funny- but at one point- still walking and on 10 mg of Midodrine I think I had 10-15 episodes of syncope in one day (I'm going back a bit because I was still walking buy not much) Couple days later I cut my head first time this flare and it was pretty bad. But still not given bed rest. 5 days later- this was the worst of this flare- I got up (I know, I know- naughty, naughty, but I just wanted to make the bed quick and get back in it quick and get right back in- well that didn't happen- I woke up about 20 min later I believe with my head in the lap of the most terrified, bravest, and bloodiest little 11 year old Joshie (my son)I have ever seen. I don't know how long he'd been with me but my guess is about 10 min. Judging from all the blood and my older son, Austin said that Josh told him that if the slowly lowered me down- my blood pressure would lower... Im guessing i tried to get up.......little by little which they did, because he knew being low my blood clotted. Horrible concussion and 5 days in the hospital over Thanksgiving I still say my son has made some of the better decisions than some of my doctors have. And, yes, I had taken Midodrine for all 3 spells. Why take it, then, you ask? It must not work. It does.... I'd faint 3x that amount if I didn't take it.

It could be the type of POTS are so different? I really pray your response is more impressive than mine- but I still will take a 50% improvement anyday! I'm sure that the etiologies of all of our situations are a huge factor- and I've spent weeks and weeks at major med centers- no one has me figured out. My discharge papers from one say "Medical Enigma" lol.

Jen

[Lemons2lemonade]

Midodrine dropped my pulse into the 30's and gave me excruciating chest pain.