Midodrine Question

[jennyg97]

How long does it take for midodrine to start working? And do you have to get used to it? Or will you know pretty quickly if it helps? I had a negative (but not terrible) experience with midodrine about eight years ago when I was going through a tough flare of POTS/NMH, but the dr. has re-prescribed it for me in this current bad flare. I haven't taken it because I've been scared, but I'm doing very poorly and feel like I have to try everything. Especially since I am going to Mayo this winter sometime (am on the wait list). I want to be able to say I've tried everything. Thoughts? Also, for anyone who's done Mayo MN, I'd love to hear more about what to expect. I'm nervous and hopeful all at once.

[Tuesday]

Midodrine is pretty fast acting, and has a very short effective period. You will know within about 20 minutes whether it's helping, and the dose should wear off in about 3-4 hours.

One of the most often-cited side effects is a tingling or shivering sensation on the scalp. If you've ever had a reaction to wasabi or horseradish that made your scalp tingle, it's the same feeling.

I would give it a shot, there's very little to lose in trying midodrine if it has already been prescribed for you. If you find the effects are not tolerable, at least you will only have to deal with them for a couple of hours.

Personally, midodrine has helped me a great deal, and my biggest complaint is that it does not last longer.

[jennyg97]

Tuesday, thanks for your response. I took the midodrine twice yesterday. Within an hour of the first dose, I had a headache. Five or six hours later, I took the second dose and the headache turned into a migraine. Normally I only get those when I get dehydrated (ie don't drink a 16 ounce bottle of water every hour and a half) or my blood pressure is too low. The headache stayed with me until I slept, but when I awoke this morning, it was gone. Interestingly enough, my blood pressure did not rise while I was on the midodrine. in fact, it was lower than it had been for the entire previous week. It was running 95/60 all day.

Today I feel not great - lots of dizziness and headrush when I change positions and pre-syncopal symptoms that make me so tired. Does it make sense to try the midodrine again? Or is a one day test enough to demonstrate if it will actually help? Since it's so fast acting and gets out of your system so quickly, it kind of seems like one day would be enough. Has anyone had a different experience?

Thanks in advance!

[Brye]

No HA's here from the midodrine but horrible scalp itching. I was able to wean off of it for a while and went about 8 months without it. Summer has beeen rough for me though so I had to give it another try. Still scalp itching but definite impact on my BP by the next day. Went from systolic 80's to systolic low 100's. I also have felt a little better. My ankle swelling resolved as well when I started up again ... bonus. Only you can decide if you want to give it another try. After making a few errors when adjusting my own meds though I've found it best to consult with my doctor before I make my own decision. Like I've stopped meds abruptly that were supposed to be weaned ... oops. Hope you find something that works for you!!

Brye

[bellajulz]

Midodrine has been my life line .. without it I literally would be bed bound. I too get migraines, but I don't feel the med causes them or makes them worse. Hope you have a better experience if you decide to give it another shot!

[icesktr189]

Heres a suggestion... I too got migraines at first while taking it. What resolved it was making sure I take it before I even get out of bed. Also make sure you take it exactly on time. I find that when I stand my blood vessels in my head are not constricted and then when I take midodrine my blood pressure goes up and.then when it wears off they are not again. That was what was causing me migraines was the constant constricting and destricting.

Sorry if this doesnt make sense, I am having a very sleepy day

[jennyg97]

Thank you for all your suggestions. I haven't yet decided where to go from here (aside from Mayo MN)- I'm just trying to find a day in my schedule when I can handle another migraine without losing time at work. Maybe the hurricane will give me a good opportunity

It has certainly been an adventurous week though. First, the earthquake, followed immediately by a syncopal episode due to the interruption of pacemaker functioning as a result of the earthquake tremors. And now the hurricane. Fortunately, I'm far enough inland, it will hopefully only cause widespread power outages and flooding, rather than actual damage. But I guess I might be housebound for a couple of days.

And good luck to all of you who are actually in the path of the hurricane. I'm hoping for the best for all of you!

[mwise]

Hi Jen,

I take Midodrine 7.5mg 3xday and prn if I need (7am-12pm-5pm) I use and move the times based upon how late I am going to be up and out of the house. I also take Mestinon 60mg 3xday (9am-3pm-9pm) I adjust the times too. I take it no matter what I am doing laying or sitting down to walking and doing things. I get all the side effects from the Midodrine-itchy scalp/head, goosebumps, feel cold, parathesia and urinary frequency. The benefits of being able to walk, work and do little things out way the side effects.

Maybe the dose you are taking is too much and causing the Migraines. I initially started on Midodrine 5mg, but after about 3 months, I needed to have it bumped to 7.5mg. Right now being on 7.5mg for about a month is working fine. You didn't say what dose and may want to start on a lower dose than what is prescribed.

Generic brands make a difference too. I went from the Mylan Brand to Global and am back on the Mylan brand because it works better.

Good luck and I hope you find what works for you.

[jennyg97]

Thanks for the responses. I must be super sensitive, because the dose I am on is only 2.5 mgs. I had another really bad episode last night that landed me in the hospital (again) so I may try the midodrine again tomorrow. I am also awaiting a prescription for norpace. Has anyone tried that before? I used it after I was first diagnosed about 12 or so years ago, before my pacemaker was implanted, and it worked well until it lost its effectiveness. So it's probably worth another shot, right?

[mwise]

I would give the Norpace a try if it did help you in the past. Also Midodrine can be cut in half. Maybe you need to cut your current dose of 2.5mg to 1.25mg. There is a line on the pill which means it can be cut in half. A few other suggestions may be support hose 30-40mmhg of pressure, salt tablets and fluids & foods high in Sodium.

[jennyg97]

Thanks! I may try the half midodrine tomorrow. Have to wait until Tuesday for the norpace to come in. But I can't sit around doing nothing. I feel like my life and my capabilities are slowly slipping away a little bit every day. I don't think I can handle another weekend like this one. And I can't handle another ambulance ride. Or another hour of distressed breathing. Or the nausea. Or the fatigue. Or any of it. Can't I please just take a vacation?

[potsgirl]

jennyg97~

I'm surprised that no one has answered your question about Mayo/Rochester yet. That's where I went for all of my testing and I was also diagnosed there. The doctor I saw, who was wonderful, has now moved back to Scottsdale, AZ. I live in Tucson so I follow up with him there. Much warmer You may want to do a search on this site, because there have been lots of questions and info regarding Mayo Clinic Rochester/Scottsdale and perhaps even the Florida clinic in the past. If you have any specific questions, please feel free to PM me. One thing I really love about the Mayo system is that they work very closely with the other doctors that might be involved in your care, and you get answers from most of the tests very quickly. My Mayo doctor here (neurologist) found a blood clot in my heart about 8 months ago, and was able to get me in to a cardiologist there the next morning. Plan to be there for a week or so if you're just started your testing....they have a couple of hotels that have underground walkways to the main clinic (which is wonderful - we had a kitchenette in our room and just bought groceries for most of our meals), and they also have a lot of hotels where you would drive to the clinic. Cheaper, but less convenient.

Sorry I rambled on....good luck!

Jana

[jennyg97]

thanks, Jana. I just got the call on Friday that my appointment is set for November. I am nervous and excited all at once. I've kind of always held Mayo out there as my last hope - something to hold onto for the future. But now I'm scared that I will go and they won't be able to help me. And then my last hope will be gone. I'm trying to think positively, of course, but I landed in the hospital again on Friday. And that always gets me a little down.

I wish I'd known Scottsdale was an option, as I have family in Arizona, but no one in Minnesota. I just thought I needed to go to MN because that's where I'd heard there was a POTS clinic. After I'd already gotten the ball rolling, I searched this site and realized that maybe I could have done Scottsdale after all.

As far as Mayo is concerned, I have a lot of questions. I am awaiting the packet of info in the mail, but in the meantime I was wondering if it is recommended that someone go with you or can you go alone? And how miserable is it? I'm guessing that you don't feel well if they are testing you so as to induce attacks. Do you have to go off medication you are currently taking? Do they have EP specialists there to deal with pacemaker settings? Was insurance a nightmare or does it seem like mostly everything is covered? How did you work with insurance?

Yes, a million questions.

Thanks again!

Jenny

[hholmes13]

Hi Jenny,

My Mayo experience is likely different from what you'll be going through. First, I work there so all of my insurance is through them anyway. Also, I didn't go through the POTS clinic. I'm not totally sure what that all entails. However, I can tell you that there are a lot of great doctors. Like someone else mentioned, the collaboration between doctors is great. Since all medical records are electronic, the docs have no problem bringing everything up and seeing what other doctors did/thought. As for having someone go with you...it probably wouldn't hurt. If your symptoms are really bad, it might be nice to have help. However, they do have people whose sole job is to transport patients from one appointment to the next. So, you definitely will have help there if you need it. Also, there are a ton of hotels connected to the clinic. Most of the buildings in downtown Rochester are all connected directly to the clinic. (Since you're coming in November, that's a good thing. We could have snow already by then. ) I wish I could be more help for you with this. If you have any generic questions about Mayo or the city of Rochester itself, feel free to message or email me. I've lived here almost 5 years now, so I know the area pretty well. I sure hope they help you find some answers!

Heather

[jennyg97]

Heather,

Thanks for your input on Mayo and on Rochester. I'm sure I'll have more questions as it gets closer. I'll be in touch. And hopefully I'll hear from some of the people who have been through the POTS clinic too.

Thanks again!

Jenny