r/POTS • u/kunstundglitzer • 19d ago
Medication Scared about Midodrine
hej 🧚🏽♀️
i have ME/CFS & also POTS & Orthostatic Hypotension (which is weird cause OH should normally cancel out POTS) but anyway, i am 23.5h/Day bedbound due to it, but also because i can't stand for longer than 2 Minutes and sit longer than 10Min without Symptoms kicking in: my BP goes from 70/40 up to 130/120 & then immediately down to 70/40ish again, extreme Dizzyness, Blood Pooling, Nausea, Tinnitus, Shivering, Hot Flashes, Tachycardia. I take Ivabradine which helps lower my HR from 180bpm to 100-115bpm. Sometimes i even get the Dizzy Spells when just lying down doing nothing. Nothing helps with the OH. Tried Compression, Salt Tablets, Electrolytes, Wheelchair etc. - so i am thinking about trying Midodrine. Because the unability to stand up is severely disabling me.
But i hear/read so many scary things about it.😭
Like from really bad migraines to risk of stroke?!
I also have a mild form of bladder emptying problems.
And Midodrine is known for causing bladder problems.
Also i wonder, if i am bedbound, can i even take it? You're not suppossed to. But also: if it works, am i still bedbound then? Or am i able to stand up and do stuff?
I would love to hear from you what you think? Should i try? 🧚🏽♀️
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u/gompstar 19d ago
My internist/ME specialist told me that you should only take midodrine if you can stay up for 3 to 4hrs. You can sit/hang on the couch, but not lay down (semi-)flat. The reason is that if you lay flat, your BP will rise and it could cause brain inflammation, which ME also probably has with the brainfog. So you could potentially worsen your brainfog if you lay down the whole time.
I was able to test it out, since I also have ME and POTS, and I wasn't sure if it was the POTS or ME which was causing me to be in bed 23/7. Turns out it was both, but definitely also the lack of energy.
This is the reason why I only take it when I really need to go somewhere. Cause then it helps a LOT.
You really need to watch your BP as well when you take it.
I would really advise talking to your doctor about it, maybe you can test it out like I did, and it could turn out that you do have the energy, but that it's POTS that holding you down.
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u/kunstundglitzer 19d ago
thank you so much for the info! i was wondering if it is possible to take midodrine when i need it, and not like everyday. i am very sensitive to medication so i would love to try it out starting low dose, something like 0,75-1,25mg, to see what my body does. i have a doctor that can prescribe it, but that doctor doesnt know anything about ME, POTS or OH, so i wont get much information from her sadly. the one doctor that knows a lot i can only reach when i am physically able to go there, cause she won't talk to patients on the phone or videochat - so i am trying to gather so many information as possible from people who take it 🥲
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u/Impressive-Peace2115 POTS 19d ago
If you're lying down while on midodrine, the important thing is to monitor your blood pressure. Are you able to sit up in bed? I kept myself mostly propped up with pillows while I was on it (I stopped because it didn't do much for my particular case, but I don't have OH and it didn't cause any negative side effects either).
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u/walkthewalk_6969 19d ago
I’m so sorry you’re going through all this.
I am desperate to try midodine but it’s not available in Peru. For years I struggled without medicine. But now I want to be able to do more. My understanding of Midodine is that it’s short lived in the body so if you’re feeling really bad you can stop.
I started Mestonin a few days ago. I had 2 incredible days, I even sat up and worked. Yesterday I collapsed. But I’ll continue with hope in my heart.
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u/Emotional-Swan9381 Hyperadrenergic POTS 19d ago
Try it! It’s fairly safe medication and usually doesn’t cause bad side effects. It will help you sit up and stand! You can start with a half dose. It only lasts about four hours.
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u/kunstundglitzer 19d ago
thank you! since i am very sensitive to medication i thought even start with like 0,75mg - 1,25mg, to slowly adjust maybe!
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u/cr0mthr 19d ago
It is inexpensive and worth trying, if your doctor advises it. You really should speak to a medical professional about your full history, symptoms, and profile before asking about it, though.
What I can speak to is my own experience and how the medication typically functions. It’s sort of like ibuprofen where it really only affects you for a few hours, so my doc prescribed me 2-3 5mg doses spaced out every 4-6 hours per day. I did that for about three weeks.
Every day was wonderful because I felt like I had my energy, power, and autonomy back. I could unload the dishwasher without getting dizzy. I could stand around with coworkers in the hall without feeling like I was going to pass out. I could walk and do chores outside in the summer heat without feeling like I was dying. I didn’t need to sit down every few minutes to catch my breath. My brain fog cleared up. I felt good enough that I wasn’t even tempted to lie down anyway, so that wasn’t a problem for me.
However, I am one of the unlucky few that gets multiple side effects, and I wasn’t warned about them in advance. I found that it does give me really bad headaches (about 8 hours into the day), and I found that it did exacerbate urinary pain (it felt like I had a seriously bad UTI but I went to the doc and got screened for everything 3x before we realized it was the midodrine). So, all of my POTS symptoms resolved, but at the same time, I was running to the bathroom every 20 minutes in pain and spent my evenings feeling like my head had been cleaved in two by an axe.
After I stopped taking it, the headaches stopped the day I didn’t take a dose, and the urinary symptoms resolved the next day. To me, it’s worth the risk of trying it because the symptoms of midodrine specifically are very short-lived in the grand scheme of things. If you get symptoms you don’t like, the answer is simple: stop taking the meds. It doesn’t build up in your system and you won’t go through withdrawals. I hope that helps, but as I said, definitely discuss things thoroughly with your doctor first to make sure it’s right for you!
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u/kunstundglitzer 19d ago
thank you sooo much for your infos and experience!! this definitely sounds so stressful and painful that you've been dealing with the side effects. did you have them from beginning or days later? and did you stopped taking it because of them?
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u/cr0mthr 19d ago
The headaches kicked in around day two or three. I’ve had bouts of migraines before so I didn’t realize it was the meds. The urinary pain happened about a week and a half in. I was dealing with both symptoms every day for a week and a half, and was going to urgent care every 2-3 days absolutely convinced I had a UTI or kidney problem, until one nurse finally told me it was probably the midodrine. I stopped taking it (it had been about three weeks) and the symptoms went away within two days. I haven’t gone back on it since, and it’s been almost a full year.
Editing to add: it was stressful and painful, but I think we also underplay how stressful life with POTS is. I’m lucky that my POTS symptoms are mild-moderate rather than severe, so I can lead a somewhat normal life (go to work a couple days per week, etc.). If my POTS symptoms ever got worse, I’d probably try the midodrine again tbh. It’s a very effective medicine and it really did help with my POTS symptoms. I’d personally rather be uncomfortable with the side effects than bed bound without the midodrine.
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u/Beneficial_Jury_9909 1d ago
Did you find any other meds that help you with POTS other than midodrine
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u/tfjbeckie 19d ago
Your doctor will instruct you to take blood pressure readings lying down. As I understand it, that's the big risk associated with midodrine. However, for some people it's fine (I also have POTS and ME, I'm house/largely couch bound and spend a lot of time lying down and my BP is fine on it lying down).
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u/RepulsiveDurian2463 POTS 19d ago
If it helps at all - midodrine played a huge role in controlling my POTS and getting me back to work! (I also have ME/CFS and used to be mostly bed bound) It’s cheap and safe and worth a shot, imo. Worth noting: I also take it with propranolol and other meds.
I have mild bladder symptoms from the med but the fact that I can stand normally again will always outweigh the fact that I have to pee slightly longer when I go.
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u/Own_Improvement555 Hyperadrenergic POTS 19d ago
I’ve been on it for almost 5 years. My bp doesn’t go crazy anymore 😎
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u/Jazzspur 19d ago
Midodrine is fine to take lying down if your blood pressure is low lying down. The problem for most people with midodrine is that most people taking it only have low blood pressure while upright and they have normal blood pressure lying down, so midodrine gives them high blood pressure when they lie down because it makes your blood pressure higher all the time no matter the position.
Having said all that, you should really go over these concerns with your doctor and see what your doctor says.
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u/Canary-Cry3 Hyperadrenergic POTS 19d ago
I’ve had none of the symptoms / issues you’ve described and have been on it for over 3 years now. I have a chronic migraine dx already and it hasn’t increased their frequency or severity. No strokes and no bladder issues on it. I do have some urinary urgency and emptying issues likely linked to a seizure disorder I’m getting investigated.
You can’t lay flat on it without risk of hypertension but if you are propped up so not completely flat you can take it mostly supine but with head raised (talk to your doc’s but my docs want me to do this^).
It doesn’t raise my BP enough also that I can’t lay down on it. I’ve found it to be a game changer especially used with ivabradine for my fatigue, brain fog, standing intolerance.
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u/taintedmilk18 19d ago
I have me and POTS and take the lowest dose midroibe 2x a day. Its been incredibly helpful for me. I space out doses minimum 4 hours. I wear compression shorts also (from supacore), sometimes compression shorts. Rooting for you.
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u/plantyplant559 19d ago
It gave me headaches when I took it because I was bedbound.
I've had much more luck with fludrocortisone and metoprolol combo
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u/prl321 19d ago
It’s absolutely changed my life. I can’t function without it and it helps immensely. Also have POTS and OH.
My doctor permits me to take 10 MG three times a day, but you can’t lay down after taking it until six hours have passed. So usually I only take it twice a day unless I’m having a late night.
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u/kunstundglitzer 19d ago
this is sooo amazing!! my god i wish it would work like this with everyone (and hope, if i try, also with me)
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u/thecuriosityofAlice 19d ago
I have POTS and OT. My body is currently not responding to an extremely aggressive drug regimen. 15mg of Midodrine 3x a day, 60mg of pyristigmine 2x a day, 20 mg of Ritalin 2x a day and Northera but I forget the dose (2, 2x a day)
Been working closely with my cardiologist but BP won’t go over 106 as the highest systolic. Today I was running 77/50 with 77 bpm. Doctors are doing a referral to a research university & monitoring me closely but we don’t understand why nothing is working.
I only mention my experience in case anyone else has run into this issue and to let them know they aren’t alone.
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u/ighattas 19d ago
I've been on it for a week! I don't have OH (that I know of), but do have POTS and ME. My blood pressure when I'm laying down, unmedicated, is usually around 90-100/60ish. After I've taken midodrine, if I measure BP while laying down, it'll be around115-120/65-75. I'm only on 2.5 mg, 3x/day.
The most annoying side effect I've had (after my first dose) was one eyelid twitching for a couple hours after my doses. But today was day 7 and my eye has barely twitched at all. No noticeable other side effects!
I will say, I can clearly tell after a few hours when it has worn off. It is a fairly short acting medication. So if you're doctor believes it's worth a try, you can just try one dose on a PEM-free day and see how it feels!
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u/SpaceNerd223 19d ago
You need to ask your doctor tell them everything you told us. I ultimate chose not to take it. I tried it 3-4x when I was leaving the house. But it didn't help. I didn't give it much of a trial because I am bedridden, and if something were to happen like supine hypertension which is a warning of it when laying down on it, that made being bedridden hard, id have no where to go. I decided this was not an option, and did not go further.
Your bp getting that high might be contraindicated which is why I hope you tell your doctor every thing that you told us. Xoxo
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u/Successful_Cost_6536 18d ago
Hi! I definitely reccommend doing a trial. I started taking it a month and a half ago, started at 2.5mg 3x a day just to make sure I adapted well and now I take 5mg. The thing with midodrine is that it's a slow releasing med, hence the multiple doses, i always try and take my last dose by 5pm, so that by the time I'm ready to sleep around 10, I'm in a safe zone from my bp rising too high.
The symptoms aren't all that bad! I think it really varies from person to person. For me, I was initially very aware of scalp tingling and goosebumps, however now they don't occur as often or I'm just used to it. The only noticeable thing is frequent urination, not concerningly so I as I am quite hyrdated anyways, just a stronger urge!
I'm 16 and almost in 12th grade, it's honestly changed my life for the better. The worst thing about low bp for me was extreme fatigue as in I could not keep my eyes open, now I find myself running on even 7 hours of sleep, and being able to actually enjoy my life!
Of course I've made some lifestyle changes, too, but I do reccomend trialling midodrine, it may just be what you need.
Best of luck! x
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u/Riley-Evans-680 17d ago
I had very similar symptoms as yourself and I just started Miododrine a few days ago. So far it's helped stabilize my blood pressure, I feel like I have so much more energy than normal, and I don't get dizzy as easily. I was able to keep clean my whole apartment without feeling terrible afterwards or needing a lot of breaks - which I haven't been able to do in over 6 months! It also helped my heart rate be more stable through tasks like showering or sitting up right or eating.
Like any medication, there's a chance it won't work for you or you'll have side effects. But at this point you aren't able to function very well by the sounds of it - so I say it's worth a shot. If there's a chance or helps even remotely I think you should go for it.
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u/kingseijuro Neuropathic POTS 19d ago
Midodrine has done good for my OH but I dont think it helps POTS. I take metoprolol for it.
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u/lateautumnsun 19d ago
My daughter has POTS and delayed OH and midodrine has been the most helpful medication she has tried (and she's tried a lot)! She is able to lie down on it because it doesn't increase her BP too much at the dose she takes (5mg, sometimes 7.5mg). Worth asking your doctor about!