Midrodrine Used Acutely And Not Routinely?

[Friedbrain]

I saw my famdoc this morning and talked to her about the scary episode I had last week where I was really dizzy and nauseous, with brain fog, a more extreme example of hypotension/lightheadedness I experience on a periodic basis. I've been on/off florinef several times, going on it during bouts of bad postural hypotension and taking myself off after feeling better because it always caused weight gain and I didn't like it. After talking some more about the bigger picture health issues, she suggested trying midodrine for those times when I feel lightheaded. So, in other words, taking it acutely instead of on a daily basis, and starting at the tiniest dose (2.5?). I searched through the dysautonomia list but did not come across posts of anyone else doing this.

Thoughts? I generally have low blood pressure, and after exercise can be really dizzy and lightheaded; I think it makes sense that increasing my bp might address these problems. However, I'm just apprehensive about trying anything new, and am not sure how often (ie how mild the symptoms) to use this. On days when I feel lightheaded (which is usually early afternoon) take one. (then should I not work out? Or should I take one *before* working out and see how I do-I should've asked.... I don't know if there are restrictions after taking a pill)

The flipside is that there have been episodes where I didn't feel well (headaches, etc) and my bp was abnormally increased (for me-ie, in the "normal range"), but "chicken or the egg": did I feel bad because my bp was up, or was my bp up because of whatever was making me feel bad?

Also, I read the comment here about it causing problems when supine.....which means what? I had nocturnal seizures in the past (9 ys ago; been on anti-seizure meds ever since), and we were speculating about maybe the two were related (lbp and the seizures)-reason being, that if I could figure out what's going wrong, that I might be able to treat it and not have to worry about seizures and then I can go off the seizure meds (new neuro wanted to take me off them without figuring out what caused the seizures-doh). But is it dangerous to take a midodrine and lay down until it takes effect? Or take one at bedtime? (Not that I think I will because I don't usually feel bad *before* bedtime.....usually after I'm laying down, do I experience either the myoclonic jerks, or waking up in the middle of the night-type jerks/problems with EE bp or narrow pulse pressure), just wondering.

Thanks for thoughts, warnings based on your experiences, etc. I'm hesitant but at the same time hopeful......I'm sure you can understand!

[Guest Alex]

Hi Friedbrain,

I've taken midodrine for about 3 weeks, so what I'm about to share with you is just my experience.

First of all supine = laying down. Midodrine is known to increase your blood pressure when laying down, ergo, my dr told me not to take it if I had planned to take a nap or less than 4 hours before bedtime.

I used to take it 3 times a day - 15 mg in the morning upon waking up, 10 mg 4 hrs later and 5 mg 4 hrs after that. It didn't help much - my bp was higher indeed, but too high for me - around 120/70 - I know, lots of people said they'd be happy with that, it just did not feel right for me. That and the tingly/itchy feeling I used to get due to its vasoconstricting properties, so I stopped taking it - with of course my dr's approval.

I've gone through lots of trial and error since I was diagnosed and sometimes there is no other choice than to do that until you find the med or combo that works best for you _ I've read lots of posts here about people trying meds then discontinuing for various reasons. We might have the same health issue (POTS) but we also come with different symptoms and different reactions to medications, so I guess you won't really have a straightforward answer unless you give it a try. If I were you I'd talk to the dr, explain my fears and ask as many questions as you can think of - if they have had POTS patients before, they have a better understanding and can hopefully help you figure things out.

I hope this helps a bit.

Good luck, whatever you decide to do, and let us know how things go for you.

Alex

[Friedbrain]

I'm curious about the "tingly/itchy" feeling several are reporting. If it's simply vasoconstrictive, and none of you are saying that it increases bp so high as to be concerning, then midodrine's vasoconstrictive effect is to, really, "normalize" constriction......and yet you get symptomatic of.....what? The reason I ask is that there are times when I get numbness in my fingers and sometimes even arm(s) during some kinds of episodes which may be in response to low blood pressure. Speculating here.....but for example, after exercising, maybe my bp drops, adrenaline kicks in, I get the shakes and my fingers/arm(s) get numb....maybe from the adrenaline increasing bp? So will I get bad side effects, this numbness and tingling, from exogenously-induced vasoconstriction? Anyone know why that happens? Doesn't make sense that there would be symptoms from simply constricting vessels like normal people..... ?

Thanks for thoughts, hypotheses, any ideas

[Relax86]

I finally succumbed to try Midodrine after prolonged low BP's and dysauto/POTs symptoms since Jan. Water, salt, gatorade would barely help my daytime lows.... but never helped my sleeping lows. Would wake up 85/42 and feel terrible. Day one on Midodrine was fantastic - great for energy, much less lightheadedness, no brain fog (which isn't really a major symptom of mine). If anything it did make me a little hyper but I think I was just so happy and upbeat from having dragging BP for so long. I did have the tingly itchy side effect which lessoned within about 2 weeks. I took 5mg but quickly realized that 2.5mg at 8am and 2pm worked perfect. I never nap so that wouldn't be an issue for me. Also my supine BP is really low but I still wouldn't test it while on the drug. Life was pretty good until one day I took the afternoon dose after a lunch of chinese food and I felt my BP spike. Had my boss at work take it and it was 118/86ish (if I remember correctly). The rest of the weekend I ran 140/90 which is just crazy numbers for me. Since then my BP has been around 116/68ish. So that doesn't seem low enough to take midodrine anymore. Which is a shame because I like the way I felt on it. I finally succumbed to medicating a symptom and the symptom changed on me - like everything changes with the autonomic symptoms we all have. I always thought my POTs would greatly improve if I could get my BP up...it's pretty normal now and I still don't feel normal. Actually without the midodrine I have more tachy and more adrenaline surges. Usually worse at night. Anyway, I would recommend giving midodrine a try. For me the 2.5mg was more than enough. Good luck.

[hholmes13]

I've been on Midodrine since May or June of 2011. I've had pretty good success with it. I too had lots of the goosebumps/tingly scalp side effects at first. It got better, and now I hardly notice it anymore. It does help me with all of the blood pooling in my legs. However, now that my bp is stable I don't take 10mg 3x/day anymore. I take 10mg in the morning along with my first dose of Mestinon because that's when my issues are the worst. I may take another 5-10mg in the afternoon depending on if I'm planning on being up on my feet a lot or if I'm feeling more symptomatic. I've had a few episodes of the supine hypertension from it this summer, and I did not enjoy it at all. My bp usually runs around 100/60 or so and I've had it go up to 160/95 while sitting and I got really short of breath and my hr was like 40. Not fun at all. So I have to be careful about taking more than my morning dose. The annoying this is, if I don't take it in the afternoon, just sitting still in a chair will cause my feet to turn dark purple within a matter of minutes. I've tried compression garments but they never help with symptoms and just cause my legs and feet to go numb. Overall though, it has helped me. I have found I can choose how often to take it depending on my symptom severity and activity level.

[Libby]

I do what hholmes does. One dose in the morning (5mg) with my adderall and beta, and that's pretty much it. I'll add another in the afternoon if I'm transiently blacking out when I stand up. Or if I can feel the blood pooling in my legs/they ache when I stand up. Or if I know I'll be out late or standing a lot. It really depends.

I take it as needed...I just need it every morning, lol. If I didn't black out on standing (especially in the morning), I wouldn't have any problem with taking it every other day or whenever I needed it. It's fairly quick acting, doesn't really need to build up in your system...

For me, the tingling is similar to what you get when someone runs their fingertips lightly across your skin, or plays with your hair. I really like it. I'm kind of disappointed that it's worn off a bit after a year of being on midodrine...I know I'm weird, haha.

All of it happens because midodrine is an alpha 1 agonist. Alpha 1 receptors are found in smooth muscle, like the muscle which lines your blood vessels. They're not found in your cardiac muscle, so there will be no extra stimulation there, like there would be with an adrenalin surge. If anything, you more likely get bradycardia b/c your bp is up and your heart thinks it can slow down. The piloerector effect is because the muscles at the base of your hair follicles are smooth muscle. Normally, when blood vessels contract it's to conserve heat (which explains why midodrine makes me so darn hot). Same thing with goosebumps - back when we actually had fur, the muscles would contract and raise the fur up a bit, trapping a layer of air that acted as insulation.

So no, you shouldn't get the same side effects that an adrenaline rush would give you. Midodrine appears to be fairly specific to just the alpha receptors on vascular smooth muscle. It also does not cross the blood brain barrier, so there are no central nervous system side effects.

[Friedbrain]

Wow, thank you! This really helps me understand the medication better, and know what to expect! I appreciate it. I was trying to work in the garden yesterday-felt yucky before going out but pushed myself and had a lot of problems with dizziness and momentary visual blackouts. Not fun! But I'm feeling better about taking it "as needed" now that I've read the feedback here!

[Libby]

Good! Glad to have helped. Blech, blackouts are annoying. I mean, there are worse things than blacking out for 5 seconds, yeah, but that cruddy feeling lingers for at least a couple minutes...and then when you're getting them every time you stand up, things add up.

I can say that midodrine is by far the most effective thing I've ever done for those.

The only other thing I would say about it is be careful not to take a dose too close to when you go to sleep. Without midodrine, my bp is around 90/55. With it (sitting/standing) it's around 105-110/70. Lying down is higher (because your body is supposed to stop stimulating the muscles around your blood vessels to prevent this, but can't with midodrine there), it goes up to around 115-120/80. I actually feel fine when I'm lying down now, and I can take a nap no problem (and I definitely do, haha), but I remember that early on I felt a little like my head was stuffed with cotton. Pressure-wise. It didn't hurt, just felt mildly uncomfortable. And it made trying to get to sleep kind of hard.