Mostly Medical: Magic Midodrine

Much has been going on medically as of late. Right now, I would like to share about a new medication which has been life changing. I'm calling it Magic Midodrine because many of us on my support forum say that we are 'searching for our Magic Pill.'

As I've mentioned earlier, I am taking something to raise my blood pressure. It is called midodrine.

For those of you who prefer the more technical information on medications, here it is straight from one of Dr. ANS's handouts.

MIDODRINE:

Brand Name: ProAmatine

Type of Drug:  Midodrine is classified as an alpha-agonist, or vasoconstrictor drug.  Unlike the stimulant drugs, it is not thought to have direct central nervous system effects.

Action:  The main effects of midodrine are to cause blood vessels to tighten, thereby reducing the amount of blood that pools in the abdomen and legs, shifting that blood volume into the central circulation where we want it to be. The drug has been used in thousands of individuals around the world, and appears to be well-tolerated.



After almost two months of working to adjust my dose we seem to have found a dosage that is working quite well. We are still continuing to do a bit more tweaking here and there with the medication. At first I found that I had improvements during the daytime, but would 'crash out' at night and be up sick with low blood pressure. Now my blood pressure seems to be better regulated at night also. For a while I was even wearing compression hose at night, which caused another batch of undesirable side effects. I take the medication 4 times/day at 3 1/2 hour intervals. Timing of the doses and not missing doses is crucial.

I tried this medication many years ago under the supervision of another doctor. It had no effect. Dr. ANS decided to give it another shot because I have tried almost all of the options available to me. I am convinced that this medication worked this time around because I had so much better monitoring of dosing. Too bad I didn't discover this sooner! I have really had no side effects from this medication other than to feel a bit 'wired' on it mentally and physically. My mind always races anyways, and this seems to add to that a bit!

Two questions I often hear are "How low is your blood pressure?" or "How low does your blood pressure go at night?" Mostly, we evaluate what to do with medications based on symptoms more than on the blood pressure reading itself. After years of realizing my readings didn't match how I felt, I mostly stopped taking my blood pressure except when I really feel it does need to be monitored.

The answer to these questions is not easy to answer because for many people blood pressure readings such as mine would be 'normal' and cause NO symptoms of feeling sick or risk of fainting.  Readings for me can range from about 120/75 to 89/50. I usually run about 90/60. 

The issue is that, for me, even when my readings seem like a hypertensive person's dream reading (108/72 for example) this is considered low. 

Why? Because I am still incredibly symptomatic. My body feels like it is in combat all of the time. It's fighting constantly to keep my blood pressure from falling (and causing me to faint), so I feel my heart pounding forcefully or racing. I feel the blood draining from my head and chest the more fatigued I become. I have difficulty concentrating and focusing. I have no stamina. I am extremely pale because, literally, there isn't much blood going where it should be going. I cannot sleep because my body is fighting so hard to keep my blood pressure up. 

What I have learned is that my blood pressure readings, while sometimes seemingly 'perfect', are in fact likely to be falsely elevated. In other words, my body is fighting so hard to keep it from crashing that is why I have so many symptoms.  For me 89/52 is scarily low and leaves me feeling incredibly, incredibly ill. This is what was happening night after night the past few months. I would be up all night long with low blood pressure, fight through a day, and then start the cycle over again. I was physically and emotionally exhausted. And that is when I began to also sink deeper into a dark night of the soul.

Before Britt, Carrie and David arrived, Dr. ANS worked long and hard with me to make this medication work. I was very scared that because it worked during the day, but my blood pressure crashed at night, we weren't going to be able to make it work. But, he did it! I'm honestly often in tears wondering what I would do without a doctor who gives me this much individual attention. We emailed back and forth for weeks trying to tweak the doses.

I knew something was changing when baby David was here. I felt better than I ever have for company and I joyfully did the chicken dance with the little man and helped bathe him. I still had some difficulty with nights and sleep, but overall did better than I ever could have imagined.

Now that the dosing is even more fine-tuned, I have this to say:

When my alarm goes off at 11:30 (yes, I know, sad that I have to set it for that!), I think, "I'm sooo tired. I can't wake up yet!" But I take the midodrine, lie back down and can FEEL it kick in and I'm ready to get up. (On days after my shot, this is not the case and even the midodrine isn't enough to combat the Herxheimer reaction).

I notice that my body is no longer using so much energy feeling like it is 'in combat'. While I don't feel 'alive' in my body the way I did before getting sick, I do find that I want to move around more. I don't feel like I am carrying one hundred pounds extra weight with each step I take. I've had more focus to blog. I have now done two flights of stairs and started going for tiny little walks again. I have had visitors and been more able to actually ENJOY having them here rather than struggling through it all. Today, Jeannine came over and we painted our fingernails! Normally I would have been too sick to sit up long enough to do this. I have much more upright time (standing is still very difficult, but sitting is certainly improving). 

My blood pressure is no longer crashing at night, so I wake up more ready to start a day. Sleep is still not my best area--and it takes at least 2 or 3 hours for my body to transition from being awake to sleeping, even with a lot of medications.

I have been attributing all of my lack of motivation to do things to depression. Now I realize that was part of the equation, but not all of it. Having Britt, Carrie and David here began, for me, a 'coming out of the dark' emotionally. But I also realize that so much of what has been going on is literally being and feeling too sick to do anything or to enjoy anything. Since starting the midodrine, my motivation has changed dramatically and my mood has also. It's amazing what a little blood to the brain can do, isn't it? And, with the midodrine I even have just a touch of color in my face that I didn't have before (we're talking about a change from gray to just pale--I'm not sure if I could say I've seen pink in my cheeks yet!)

I wanted to write about the midodrine before I head for my next bicillin shot on Tuesday because when I wake up on Wednesday I will wonder if all of this could possibly be true? If I could possibly have these days of spring?

As with most things, it's difficult for me to 'rest' in this new state of improvement. I still have so very, very far to go. And things can slide backwards so quickly that I'm almost afraid to talk about how well this medication is working. Will it last? Will it keep working? Will the more difficult Lyme regimen make these spring days go away again? All I know is that on Friday, for the first time in a very long time, I said out loud to Facebook that I felt happy. And that is a word that has long been lacking from my vocabulary when it comes to describing how I feel.

One of our goals with the midodrine is to continue to monitor it as I increase the Lyme medications (another blog! :)). As I increase the Lyme medications, I will likely have increased ANS symptoms and will need to support my ANS more. 

Hopefully my 'medical posts' are helping to clarify what I think has become a confusing mess of medications and illnesses to most folks! 

Happy Monday! 

Blessings,

Emily

Photos:  Tulips that mom bought to brighten my day. They reminded me of the 'touch of spring' that I have felt recently, and especially the last three days.