Midodrine Medicine Trial

Hey Everyone,
How are you?

Today I thought I would talk about and kind of document my trial of the drug called Midodrine. I have been diagnosed with Orthostatic Intolerance which is slightly different to PoTs but have very similar symptoms. 

What is Midodrine?
Midodrine is a drug that can be used to treat people with disorders of the autonomic nervous system which include low blood pressure, fainting/lightheadedness and postural tachycardia syndrome. It works by binding onto receptors causing blood vessels to narrow, thereby increasing blood pressure and reducing symptoms ( hopefully :) ). 
Midodrine is not a licensed drug by the FDA for PoTs (or similar conditions) meaning not all GPs will prescribe it and it has to be done by a specialist under supervision. Knowing my GP surgery, they will kick up a stink and won't prescribe it for me so it will probably need to be prescribed through the specialist who recommended it in the first place. 
As far as I am aware, it is used as a last resort when nothing else works.

Midodrine is a short lived medicine but fast acting. So, I take it before I get out of bed and then every 4 hours after that (within the safe dosage quantity obviously) as it then finds its way out your system in that time whilst also doing its job.
I have been fainting far to much recently and feeling lightheaded when I sit up properly or stand up or walk any distance and when I eat. Now, there is nothing to say this medicine will help with any or all of this but the aim is to help control my blood pressure and heart rate better so it is steadier and hopefully in turn stops the headaches that turn into lightheadedness and fainting.

What are the side affects?

Common – tingling and itching, increased blood pressure when lying down, headache, nausea (feeling sick), heartburn, inflammation of the lining of the mouth, flushing, rash, chills, difficulty urinating.

Less common – sleep disturbances, restlessness, agitation, irritability, slowed heart rate, urge to urinate.

Rare – palpitations, rapid heartbeat, abnormal liver blood test.

Possible side effects – abdominal pain, being sick (vomiting), diarrhoea, anxiety, feelings of confusion. But these are pretty much the standard side affects for most medicines.

On the day, they took my blood pressure on arrival and then an hour after taking the first tablet. Because of my Gastroparesis and my stomach not digesting stuff very well, we have to crush the tablet and mix it in a little bit of water and do it that way in order to get the best out of the tablet and ensure it is digested properly (the medicine doesn't come in liquid form unfortunately). They start you on a very low dose of 2.5mg and you can build up dosages and the amount of times you take it in time as long as you don't take more than 30mg a day. So after a consultation with my specialist he and the specialist nurse explain the medicine in depth and more tests I need to go for to try see what is going on in my brain when I have all these bad turns after food but anyway, I then took the first tablet, went away for an hour under my parents supervision and then went back to have my blood pressure re-checked to ensure it hadn't spiked up too high or anything. For once my body behaved and my blood pressure was absolutely fine. Like I said, this is a fast acting medicine and that morning I had had a headache from walking around and I did notice it went away and then came back and kind of came and went for the first hour after or so of taking it. 
After we had the ok from the Dr to leave with my 3 month supply of medicine, my parents took my shopping to try cheer me up and get me out the house as I had been stuck inside in bed for about a week an a half prior. I even got to use daddy's credit card not that the shops were that great to be honest. Now, lets bare in mind, I hadn't been able to walk to the toilet a few days earlier so braving it and walking around the shops was a big deal. By the time we got to the shops about a further hour later (so 2 hours after taking the medicine) my headache and any lightheadedness had gone - coincidence or medicine? We walked around for about an hour and a half before I started feeling headachy and lightheaded again so my I took the next tablet as it had been 4 hours and within about 10/15minutes I was feeling a bit better (other than extremely tired as by this point it had been an extremely long day and was running off a bag of crisps and a chocolate bar). Now, I don't want to say for sure but I would hazard a guess that this was just a coincidence and maybe the medicine is doing something...... result!! 

Then if we move on to today which (when I am writing this) is the day after starting the trial I woke up and sat up. When you have Orthostatic Intolerance, your body doesn't like to sit or stand up straight and this is where my symptoms start in the morning. If you are having a day in bed then you shouldn't take the medicine for the same reason as why you shouldn't take it within 4 hours of going to bed - it increases the chances of your blood pressure going too high. Today is Saturday so it's kind of a lazy day but because I have moved around and stuff I took the first tablet in the morning and again within about 10/15 minutes my headache and lightheadedness had significantly improved. 
One thing I haven't been able to do which has upset me a lot is take my doggie for walks because I just feel too ill walking the distance. So, putting the medicine to the test, my parents and I took the dog for a walk - not a long one but a decent distance that he gets exercise. Normally, I wouldn't get very far before the not feeling good kicks in, today - I got through 75% of the walk before I started getting a headache and not feeling too good. That is a massive improvement and again, I don't want to get too excited too early on as it could also be because my body has had a week's rest from well.. life! However, I am super happy I got to take him and didn't end up feeling totally horrendous!! 
I have also had some Gluten Free Porridge and although I did end up feeling fairly lightheaded after.... I haven't fainted!! Coincidence or just a one off as I occasionally have one off's where I don't faint.... only time will tell. Now although I did feel quite lightheaded after eating a Gluten Free Pizza for dinner, it wasn't anywhere near as bad as usual and it took longer to kick in as well. I also did not faint - just didn't feel that great. Still a major improvement if this is the medicine doing something and if we got the right dosage who knows!
I did put the medicine in a spoonful of yoghurt this morning and then a spoonful of the porridge for the second one and it was much better than the water.... didn't taste as bad haha.

I am going to write another post in a few days or a week and see how things go with time. I also know that after a little bit of time they can increase the dosage and amounts of times I take it if needed, so there is room for increasing it and adapting how I take it a little more to what I personally feel I need which is good.

That's all for this post. I thought I'd document it on here so that firstly I can keep track of how things have been when the Drs ask but also, I know that before I started it I was looking online and asking people if they'd taken it and advice and questions about it and didn't find that much on it so thought it might help anyone who is considering trying it.

If you had tried it, I'd love to know your experience with it!! 

Until next time, 
Stay Strong
<3