Midodrine Crashes

[s-pot]

Just a quick query bout meds.....

Ive increased midodrine to tds (2.5) again..find it hard to tolerate this drug but its my only option at the moment until I see a specialist in May. Im Coping with the serious headaches i get but wondering do other pple find there's a great burst of energy when you take Midodrine and a crash 3-4hrs later?

Tachycardia is better controlled with increased dose and seems to be improving my presyncope symptoms a bit better (daily vomiting) but my day seems to filled with moments of great energy bursts followed by trying to drag my eyes open and force my body to keep moving while at work!! Its v tough to manage and id say pple wil start to notice soon... im full of energy and fun one hour (v bubbly personality) followed by being very quiet and subdued the next as i am trying to pull myself awake.

anyone found anything that can manage this a bit better whilst taking midodrine?

[ramakentesh]

I found it a rollercoaster myself as well - always having to watch the clock. Often id overdo it on midodrine and crash later. I crashed less when i didnt overdo it. In actual fact I found midodrine reduced my exercise tolernace rather than the opposite. I was convinced about midodrine - and i generally felt worse for longer on it than I felt better and i felt very wired so I went back to mestinon.

[HopeSprings]

Yes, "crash" is the perfect word. I took it for two days (at night hoping to sleep through any side effects) and woke up feeling like I had been hit by a truck. All I could do was lay on the couch all day - not an option. I have heard others say though that over time they were able to tolerate it and it helped them.

[icesktr189]

The only way I was able to tolerate midodrine was in combination with an SSRI. The SSRI "filled" in the gaps where the crash would normally take place during doses. Its too much of a rollercoaster if my POTS isnt doing well.

[jenglynn]

I guess I have a love/hate relationship with Midodrine. I am unable to tolerate Mestonin and have been taking Midodrine for about 6 months now. My orthostatic hypotension is pretty severe (without Midodrine my sitting up BP is usually 50/30- so you can imagine what happens when I stand up). Midodrine makes it possible for me to sit up but not stand. The problem is that it doesn't last very long so you have to be vigilant about your doses. Or I do anyway. I am pretty fortunate I guess... I experience the effects until its time for the next dose.

I think I am one of the lucky ones who responds well to Midodrine. I have heard so many horror stories. My side effects are pretty typical... I am FREEZING... goose bumps, shivering... so I am constantly bundled up- but I tend to run a low temp typically anway (usually between 95-96). Oh, I should say my dosage is 15mg 3x a day. I notice a small change in personality- meaning I am a little bit more talkative and upbeat maybe is the word??? When it wears off, I notice a small change in personality and if it is my last dose of the day when I am not taking another dose I have a mild withdrawl feeling but it is pretty slight that I don't know if I would have even noticed it had I not read about it on the side effects. I honestly wouldn't even be able to sit upright without it, so I have to take it no matter what- but I think I am VERY LUCKY that my side effects are so minor- especially when it seems like my dose is higher than a lot of people take. When I wake up in the morning- pre-drugs- my lying down blood pressure is usually in the 70/50 or lower. It has never worked well enough to allow me to stand yet... but even being able to sit up from time to time is a victory so I take it. I also have the option given to me by my doctor to take a 4th dose before bed- which usually is a no-no- because it causes hypertension while supine. But, I am "supine" most of the day and hypertension is not a worry for me- but I don't know why, I just choose not to take that 4th dose.

I am hopeful that SOON I will start to improve and not be bedridden the rest of my life, so I am curious how I will react to it when I am able to walk around. That could change everything. But for now, I will keep taking and put up with the side effects. My doctor is talking about moving me up to 20mg 3-4x a day next month but I am not sure about that. I think staying at 15mg is enough. I guess I will listen ti his argument before I make up my mind...

Good luck and feel free to ask any questions you have!!!!!

Jen

[rach73]

Thank god you posted this topic! I thought I was the only one! lol

I am still having problems with midodrine affecting my bladder - 3rd UTI since December, I am still battling on with it as it makes such a difference to me. My head is clearer so I can hold proper conversations, my ptosis isn't as bad, BP gets into the 100/60 bracket rather than being 90/60 or lower. I do have more energy and I am able to be out of bed for longer stretches which is a bonus as I spent most of the summer stuck in my room!

I have the side effects of my hair standing on end and my hands going an interesting shade of blue, always cold but then I was before!

I notice it wearing off at about 3 hours and then my POTS goes nuts much worse symptomatically for me than prior to midodrine. I get a racing heart - which I had but rarely felt, much worse post prandial hypotension so I have to try and schedule eating around when the dose is most potent. I notice it most when I go to bed at night I have vertigo symptoms for about ten minutes when I lie down initially - whole room spins, and my heart will pound out of my chest when I change position in bed.

A massive improvement I have found on midodrine is that when I am in the car I dont have to have my feet on the dashboard (oh Im not driving by the way lol) - I literally start feeling faint as soon as my feet hit the floor - so thats a brilliant achievement for me.

But yes the midodrine crash exists, thank you for confirming this.

Rach

[s-pot]

Thanks for everyones responses here! bin working and sleeping ALL the time wen i was off the last few days hence the delay on replying!

Ye all have described each thing im experiening with Midodrine here! At least im not on my own or imagining it so!

Raman...Rollarcoaster is defo the right word..up one min and down the next! I think its worse to try to manage than my pots symptoms nw. I think for me the cure is definately proving worse to tolerate than the problem!! Althou its nice not to be vomiting everyday at the same time...the midodrine definately controls the tachy and my presync symptoms better when it peaks but then causes a list of other problems!

Ive been on an SSRI and the Midodrine for the last year to try to manage this POTS, my doctors own words are to 'mess around with the midodrine nd see what helps'!......IT DOESNT!

And surprise surprise im about 10 days into the increased dosage...im completely fatigued and the really bad migraine headaches have kicked off another symptom of increasing dosage i get that doesnt seem to lessen if i try to keep goin! stuck in bed this morning in a dark room with my eyes closed it was so severe.....Think it is time for me to give up on midodrine now and find something else!

Rach73...i get exactly those problems wit it too! As soon as it starts to wear off the post prandial symptoms are awful. For a long time i thought the dry wretching/vomiting I get with pots was something to do with the type of food i was eating but i could never find a pattern/trigger foods....in fact its not!! its just that my tachy gets waaay worse after eating and when i stand up from the table it kicks of the vomiting/dry wretching . Also the night time pounding on moving or just sitting in the bed is much worse...it seems i get a rebound more extreme tachy/hr response when the Midodrine wears off!

Thanks to you too Rach73 for stating that.....wasnt sure if this is a usual occurance for pple on midodrine/wit pots too!!

Can anyone fill me in on Mestonin and what it does? Im wondering if i should have even been put on midodrine.....tilt table test shows my BP stays stable, if anything it went up when i got very tachy. Im worried that the severe headaches i get when i try to increase the dose is from high BP...also experiencing black spots in front of my eyes at times over the last week or so

[jenglynn]

I should say that I DID notice a big change in my relative success with Midodrine when I started my anti-depressant (Paxil) and Adderall for dopamine. Prior to starting those meds, my crash was very much like what everyone else is describing. I still get quite the crash and can tell when it has worn off immediately. But my overall success with Midodrine and its effects were helped a lot by adding the Paxil and Adderall. Midodrine does help keep my BP high enough to function sitting up but I believe Adderall also may raise BP as well so it could be the combination of the two.

Jen

[goldicedance1]

Midodrine is very very short acting. Perhaps you need to space it differently. When my POTS is really flaring, I would take it closer together. Why would you take it at night when you are sleeping? I don't understand that.

When you start getting the crash is when you should start a new dose. Also maybe the dose you are taking is not high enough.

I was taking 10 mg 4 times a day when upright, allowing at least 4 hours before lying down.

Also maybe you need to add Midodrine in combine with other drugs.

[hholmes13]

Midodrine has been a life saver for me! My POTS/OI is definitely not as severe as many of you on here. I was horrible last April-August but then it started to get more tolerable as the temps started to cool down in fall. I'm pretty lucky in that I don't have the horrible side effects from it. I get the goosebumps and hair standing on end and it makes me colder than usual (which kind of stinks because I'm normally freezing anyway) but that's about it. I used to take 10mg 3x a day but have cut it down to 2x. When I'd take that 3rd dose, the shivering and goose bumps would get so bad that I just couldn't seem to get warm. Once my doc paired this with Nadolol (10mg) to control my tachycardia I can get through my days a little easier. I can definitely tell when it's kicking in and wearing off though. Now that I don't take a third dose in the evening, I just have to be careful getting up and down. The other night I wasn't thinking and stood up too quickly and reached my arms over my head to stretch and ended up collapsing on the floor. Oops. However, it really helps me out when I'm getting going in the morning. I hope you are able to get things figured out! I agree with others that you may need to combine it with something else to really get the max benefit but you should definitely check with your doctor.

On a side note...I find it so interesting that we can all have such similar symptoms in our illnesses but all react to medications so differently. It really feels like the way to treat POTS is just throw a bunch of stuff at it and hope something sticks. Talk about frustrating!