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Midodrine for Dysautonomia

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by kerrilyn, Jun 18, 2010.

  1. kerrilyn

    kerrilyn Senior Member

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    I had a positive TTT this week at an autonomic clinic and the doctor wrote a script for Midodrine. I heard him say I have Dysautonomia and I was sent home info about Vasovagal Syncope. I tested myself for POTS both the night before and the morning of test with a home HR monitor, and my HR would jump up 30 bpm but not sustain it for long, it was just under the 30 bpm. Sometimes my HR will climb and sometimes it won't, so not sure if POTS showed up on the TTT. I didn't think I would faint that day, but I did. Blood tests for catecholamine were sent away and I'm getting an EKO and holter moniter soon too.

    Of course, he wants me to increase fluid/salt intake and the med is to help raise my blood pressure. I've read about the risk of Midodrine increasing BP while laying down. What other side effects should I watch for? I don't take other meds, but are there interactions with any supplements? If you are a drug like Midodrine, are you on it forever?

    I tried to use a G-suit (compression flight pants) to stop blood from pooling but they were not an exact fit, they were too tall. I found that they felt heavy to wear them and move around, so that I think it tired me out more than was intended.
     
    ahimsa likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Kerrilyn,

    I also "flunked" my TTT but don't have POTS--my heart rate doesn't rise at all when I stand up--my BP just slowly tanks. I also tried the usual dysautonomia drugs including midodrine. I thought I'd found a miracle for the first few weeks on midodrine, then, quite suddenly, started getting very alarming side-effects--and not while lying down. I felt like I was going to have a stroke and paced the floor for the 4 hour half life of this med--all the time holding my phone in case I decided to call 911.

    My doc told me not to touch it again. Why I had this reaction after a 2 week honeymoon, I have no idea. I had not changed the dose, timing or anything else. So, just be cautious and alert for any side-effects you are not comfortable with.

    After trying several other drugs, (my doc--an autonomic specialist who himself has POTS), gave me a combo of very low dose strattera and cymbalta--both at "below therpeutic levels." I had to ease into them over about 6 weeks as they were very hard to get used to--even at such low doses. This combo worked very well in me for OI. My guess is that it worked by raising the level of norepinephrine in the synapses--as norep is a vasoconstrictor. There is also the surmise that we have damage to our norepinephrine receptors.

    Now, through other therapies, I have been able to stop these drugs but do use cotton support knee socks and an abdominal binder if I know I will be standing up for a while. I manage with this, though OI is a bugger and seems to be worse in the heat.

    Hope this helps,
    Sushi
     
  3. kerrilyn

    kerrilyn Senior Member

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    Thanks Sushi.

    Mine varies, some days it's 60 bpm supine and then up to 155 bpm if I stand for a while. Other times, like this week, it fluctuates between 85-110 with standing.

    Ack - that's frightening. Sorry to hear that, and good to be aware of.

    I've avoided drugs like Cymbalta, I'm worried about weight gain. I'm very much affected by the heat too (((going to be a long, hot summer))), and hormones. I'm definitely worse in the morning and during menstruation. I see in the vasovagal syncope info the doctor gave me, that is not uncommon. I think with perimenopause, this is getting worse. I hope it will settle down again, but I have a long way to go till menopause, and hopefully that won't make it worse still. I'd prefer other therapies to help instead and not need drugs long-term.
     
  4. ahimsa

    ahimsa Senior Member

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    I've been taking midodrine since 2003. I started with a long, rambling history of how I came to learn about my dysautonomia before I realized that I should start with answering your questions ("executive summary" so to speak, LOL!) and then provide background later.

    The main side effect from midodrine that I've noticed is a feeling of my hair standing on end (goose bumps). I get the feeling mostly on my head but sometimes on on my arms. That side effect has greatly diminished over the years (or maybe I've just gotten used to it). The only other side effect I've had is an occasional increased urgency to urinate. It happens mostly if I've been sitting in the recliner resting for several hours and then I get up to do something around the house. Just as soon as I stand up I realize that I must go use the bathroom before doing anything else. So, for me, those have been quite minor side effects (I know that I'm fortunate that it has worked well for me).

    I take some supplements (mostly vitamins and minerals, also evening primrose oil) but I have not read about or noticed any interactions between supplements and midodrine.

    When I first started to take midodrine I monitored my blood pressure pretty carefully but I've never had a problem with even slightly high blood pressure. Even now, so many years later, I can go to the doctor for a mid-morning appointment, after I've taken midodrine, fludrocortisone, two salt tablets and a cup of coffee and even with all that in my system my BP is normal, generally about 100-110/65.

    I do make sure that I take my final dose at least 4 hours before I lie down to go to sleep. And if I'm very sick with a virus or flu of some kind, and I'm actually in bed lying down flat, then I'll skip it. But other than that I'm not very worried since I don't seem to have any tendency toward high blood pressure. Whether you are at risk of BP going too high probably depends on your family history and other medical issues that you may have.

    I don't have any idea but my guess it that the answer is yes. My understanding of this drug is that it is a vasoconstrictor. It treats the symptom of low blood pressure by helping the blood vessels constrict more. But it is not a cure so if you stop taking it then, unless you have eliminated whatever the underlying cause was for the drop in blood pressure, then the symptoms will come back.

    Okay, now for some background.

    I had my first positive tilt table test in 1995 and was diagnosed with NMH (Neurally Mediated Hypotension, aka Vasodepressor Syncope, Vasovagal Syncope, Neurocardiogenic Syncope, etc.). I did not have POTS (at least, not at the time). On the tilt table I passed out after about 20 minutes with no isoproterenol (a drug that they sometimes inject in phase 2 or phase 3 of the tilt table test if there is no abnormal reaction after a certain amount of time).

    Shortly after this first tilt table test I started trying to treat the problem with a combiation of fludrocortisone (Florinef), salt tablets (5-6 per day, Thermotabs or the equivalent) and increased water intake (2.5 - 3 liters daily). I got reasonably good results for a while. But over the years the the treatment became less effective (not sure whether I got worse, fludrocortisone effects started to wear off, or what).

    In 2003, while fighting with the evil disability insurance people (anyone who has fought to get LTD benefits under ERISA laws in the USA will know what I mean), I had another tilt table test. Exact same results except this time it took 30 minutes instead of 20 minutes.

    After this second tilt table test the cardiologist recommended adding midodrine (ProAmatine) and reducing, but not completely eliminating, the fludrocortisone. The other change my primary care doctor made, which I think has been quite helpful, was to add a prescription time released version of potassium (e.g., K-Dur or Clor-Kon). I was taking over the counter potassium before, and having my electrolytes measured yearly (fludrocortisone can deplete the body of potassium), but I think this works better.

    One last comment, probably unrelated to your midodrine questions, is that I may have POTS now. A few months ago I wanted to measure my standing blood pressure the first thing in the morning before taking my first dose of midodrine. So I did this almost every day (a few days I was just too wiped out) for about three weeks. My blood pressure monitor measures heart rate as well as blood pressure. My blood pressure was all over the map but what really surprised me was that my heart rate was consistently fairly high just from that 1-2 minutes of standing still to wait for the blood pressure machine to finish. My heart rate ranged from 113 to 150. I guess I have gotten used to this high heart rate, too, because I would never have guessed it was that high.

    My body really does not like standing still. I still remember how the technicians on that first tilt table test had to tell me to stop moving my feet. I was fidgeting without even realizing it. And after all these years the number one treatment for me is to avoid those things which cause problems (no standing, avoid heat, and limit sitting upright as much as possible - sit with legs elevated, either crossed legs or in a recliner). I have chairs all over the house - bar stool in the kitchen, chair in the bathoom, and even a seat in the shower. And for me, air conditioning is a necessity, not a luxury.

    I hope this is helpful information. If I missed something, or you want to ask a specific question, feel free. It may take me a while to get back to it (e.g., this took me maybe 40-45 minutes to think about and type in) but I will answer.

    Good luck with treatment options. This can be very difficult to treat. I do better on midodrine than without it but I am not back to normal by any stretch of the imagination.

    Marjorie
     
  5. Tammie

    Tammie Senior Member

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    I was recently in the ER for passing out due to OI issues, and was told that OI and vaso vagal problems are not at all the same thing, though I have been diagnosed with both....so I am wondering why you were given info re vaso vagal issues if you were told that you had POTS (a form of OI)
     
  6. dsdmom

    dsdmom Senior Member

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    I'm contemplating trying midodrine this weekend. I have a prescription from my dr and with this awful heat we've been having I've been feelign worse. I am going to start super super low - my dr prescribed 2.5mg and I'll start at 1/2 that probably. If I take it i'll let you know how it oges.
     
  7. kerrilyn

    kerrilyn Senior Member

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    Hi Tammie, I wasn't told I have POTS, I wasn't flat out told what I have - that I remember anyway. I just heard the doctor mention dysautonomia and that I don't have Orthostatic Hypotension (my blood pressure does not fall enough immediately upon standing) so they wanted to do a full autonomic workup TTT that day. Honestly, at the end of the test I was too out of it to retain info in great detail. At the end he focused on telling me that my BP is too low, every doctor I've seen has always said having a low BP is good - you know the drill - so at least someone realize that is not the case.

    I told the doctor prior to the test that I have some symptoms of POTS and my HR will raise 30 bpm upon standing, some days it continues to climb, and other days it just hovers above/below the elevated 30 bpm mark and kind of bounces around, taking longer to climb and I don't stay standing to find out if it really will. I'm not sure how much my HR went up that day. I'll likely find out more when I get the report and other tests/results come back and I will be seeing another doctor (the head of the Dep't) at a later time.
     
  8. kerrilyn

    kerrilyn Senior Member

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    Please do dsdmom, I'd be interesting in hearing how you do.
     
  9. kerrilyn

    kerrilyn Senior Member

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    Marjorie,
    I can relate to a lot of what you've said, the disability system (different country, but still not fun), not knowing what my symptoms were from till recently, I just learned to make adjustments like rarely stand still. My BP is about the same as yours at the doctors office too and I am usually very stressed to go there.

    Thanks for all the info. The doctor wants me to take it when I first wake up and not get out of bed for 1/2 hr. 2.5 mg 3xday. I'm barely vertical and mobile before 2 pm, I hope that improves. Re: frequent urination, I already have that at times. I took 2 of the pills prior to leaving the hospital and with all the saline I was given it was an interesting trip home with frequent stops!!

    I know on another thread, you talked about a racing HR in the morning, I have that too. I'm suppose to do a 24 hr holter monitor soon, I wonder if it will give insights into the cause of that? Just my luck it won't happen that day. Wouldn't it make sense to start the med after that test to get 'my normal' results?

    Another thought: Since this is a vasoconstrictor and one of the side effects is pain (or so it said when I picked it up from the pharmacy tonight), I wonder if it may affect my horrendous menstruation flow/pain or if it's not possible?
     
  10. kerrilyn

    kerrilyn Senior Member

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    Holy itchy/tingly head Batman. I get odd tingly sensations at times all over my body and that has been increasing this past year, I figure it's some sort of neuropathy or from B12 deficiency. Since taking the drug this morning, there is sure vibrating/tingly feeling on my scalp primarily, but in other areas too. It's not seemed to really raise my BP much (systolic went up 10), but I am awake and alert at 10:30 am - that's rare.
     
  11. Tammie

    Tammie Senior Member

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    ah....that makes more sense....hope you get some more answers
     
  12. dsdmom

    dsdmom Senior Member

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    I ended up taking midodrine today - as I mentioend, y dr prescribed 2.5mg and I took 1/2 that. Didn't feel anything at that dose. At least nothing bad. I seemed to do pretty good outside today and we went the pool but not sure if the midodrine helped that or not. I did not take my blood pressure but will next time I take it, which may be tomorrow.
     
  13. LaurelB

    LaurelB Senior Member

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    For those on Midodrine for any length of time, have you seen improvements in your health since taking it? If so, what kind of improvements? Thanks!
     
  14. jstefl

    jstefl Senior Member

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    I started Midodrine several years ago after my BP dropped to 80/50, and my pulse slowed to 50. I was very tired, afraid to drive, had difficulty standing or driving, and had lost nearly 20 pounds.

    I took 30 mg a day for about two years. I took my BP and pulse every day to see how things were going.

    I slowly gained back the lost weight, and my BP and pulse increased.

    I then started Valcyte. I noticed that as I took the Valcyte, my pulse and BP started picking up. I started weaning myself off of the Midodrine, and before I was done with the Valcyte, I was completely off of the Midodrine. I also noticed that my pulse and BP were much more stable that on the Midodrine. On the Midodrine, my pulse could be 50 , or 100 on any given day. After I stopped the Midodrine, my pulse was 60 every day.

    I feel that the Midodrine helped, but the improvement I got from the Valcyte was much better than the Midodrine.



    John
     
  15. Klmrav

    Klmrav

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    Just started Midodrine for OI. The extreme heat of late sent me to get help from a cardiologist. My TTT was a decade ago and did pass out when the nitro was given. I haven't had any real pos or neg affects from midodrine other than a mild headache when it wears off. I think I'll ask for 3xday instead of 2x. I seem to get a rebound near the 4hr mark and the headache starts (not bad enough to take anything though). After a week or so, if all goes well, I'll call to increase dose from 2.5mg to 5mg. I am also taking 3gr of valtrex and other meds/supps, including 30mg cymbalta. So far so good. Not worried so much about HR raising when laying down...will take my last dose at least 4 hrs b4 bed. I will check BP & HR occasionally when I'm in the lazyboy during the day just to be sure.

    Karen
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Karen,

    I hope midodrine helps you! Just a caution though...it worked really well for me for 2 weeks and then suddenly I thought I was going to die--really! I paced the floor for hours not wanting to call the paramedics (knowing what they are like) and waited out its half-life successfully. (I knew it was only a few hours)

    Others have had great success with it and others have had sudden, dramatic side-effects. So, if something feels at all funny, don't take another dose until you are sure what is going on. That was the mistake I made--I felt a bit light headed but went ahead and took the next dose.

    I don't want to alarm you, but just let you know that a few patients get sudden side-effects after a "honey-moon."

    Best wishes,
    Sushi
     
  17. orion

    orion Senior Member

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    I've wanted to try Midodrine for quite some time but my doctor refuses to give me a prescription. Can anyone recommend a good online source?

    Thanks in advance.
     
  18. Sing

    Sing Senior Member

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    Dr. Peter Rowe of Johns Hopkins has probably studied POTS and NMH in ME/CFS more than anyone. He gave a webinar for the CAA last September. The link is found here: http://www.cfids.org/about-cfids/orthostatic-intolerance.asp

    He has a lot of clear, detailed information on the whole subject, including treatments and their effects.

    I am on Midodrine now, which helps somewhat. Fludrocortisone, on the other hand, doesn't work for me. It does make me retain fluid and increases my BP a little bit, but when I increase the dose to get a greater effect, it just makes me very depressed. Dr. Rowe mentioned this as a side effect for some. The Midodrine for me is better, certainly this time of year, but I can't take it once the weather turns very cold because I shiver and suffer from the cold on this drug, as it constricts the blood vessels in surface areas. I am waiting for the drug that is used in Japan which is pending approval by the FDA and is supposed to be more effective.
     
    ahimsa likes this.
  19. Klmrav

    Klmrav

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    Hi Sushi,

    Thanks for the heads up. I'll keep an eye out. What dosage were you on?

    TC,
    Karen
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't remember now, but it was a very low dose and I took it twice a day.

    Wish you the best with it. When it works well for patients it makes a big difference.

    Sushi
     

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