Okay fellow patients… I need your advice!

After a Tilt Table Test confirming a P.O.T.S. diagnosis, my Cardiologist prescribed Midodrine, at 2.5mg, 3 times a day. I haven’t taken it yet.

Share your experiences? Please? 🙂 Thanks!


14 responses to this post.

  1. Posted by Christiane Racette on March 15, 2010 at 2:19 pm

    I was started on Midodrine last October on the same dosage that you are now on, with mitigated effect.
    My cardiologist suggested that I start on a low dose to avoid headaches, which I’m glad to say I did.
    The only side effect I have is some tingling all over my skin and scalp, and can’t wear my hair too tight as it hurt.
    My blood pressure has remained normal (I thaught my husband how to take a manual blood pressure), even lying down (thanks god for that!).
    I now take 10mg, 3 times/day, but because my heart rate is stil too fast (120/130 bpm doing the dishes) he has started me on Ivabradine last week.

    Hope this help.
    Keep us posted on your progress.
    Take care.


  2. Yes, my Cardiologist wanted to do a mitigated effect with me, too. (2 weeks at 2.5mg, then start with 5mg…etc.) I am so glad you’ve had success with the Midodrine.
    So I tried my first 2.5mg dose yesterday morning and I got the tingly, cold sensations and all that, but no major side effects. A slight headache. It did made me feel better while being upright and standing, BP averaging at 115/82. 🙂
    BUT after about 4 hours (the time I assume it was wearing off), I started feeling more tired, weak, and dizzy than normal. I was really lethargic and my BP dropped to 79/51… not good. So I hesitated in taking my second dose and called my pharmacist, who told me to wait and talk to my doctor before taking it again.
    So I wanted to ask you, had you ever experience this sort of “crash” type-thing after the med wore off?? Is it part of my body adjusting, or recovering from the over-stimulation of my alpha-adrenergic system/sympathetic activity? Hmm… wanted your opinion. 🙂
    My heart rate seems to be the same as yours while up and doing things, like dishes. I tend to stay in the 120-130bpm range. What is Ivabradine? Is it like a beta-blocker? And has it helped??

    Thank you for all your help. It means more than you know.
    Hope today is a GOOD day for you. 🙂


    P.S. I also taught my husband how to take manual blood pressure… it IS a blessing! Hahaha! 😉


  3. Posted by Keith on March 20, 2010 at 11:32 pm

    This may be a long shot but has Thiamine deficiency been ruled out? There’s a rare genetic form called genetic berberi where the body loses its ability to absorb thiamine from food. It affects both the cardiovascular and nervous system. A simple blood test should rule it in or out but it’s not one doctors would generally think of.


    • Hey Keith! Thanks for the input. I haven’t had that ruled out or any blood tests to check for thiamine deficiency. I’m wondering though, if it’s genetic, wouldn’t I have seen the disease in some of my family members? They all seem to be really healthy. What are the general symptoms? I’ll definitely mention it to my doctor and do some research. Thank you! 🙂
      Hope today is a good day for you!
      🙂 Take care.


  4. Posted by Keith on March 21, 2010 at 1:21 am

    Hey Hillary, Symptoms are many and varied – basically the same as for traditional beriberi but I think they tend to appear more gradually. To be honest, I know very little about it myself and am in the process of getting tested for it. I don’t think there’s much research on it either. If there’s nothing similar in your family that may make it more unlikely but the symptoms do correlate well with dysautonomia symptoms. The story of a cfs patient here is interesting. http://www.mecfscanberra.org.au/docs/stories/bronwyn.htm Sorry that’s probably not much help. It may not fit your symptoms or history and I’d hate to give you false hope but you never know.

    Take care also. 🙂 Hope you find some answers that will put you on a road to recovery.


    • …Wow, Bronwyn’s story is remarkable. That other article from the Oxford Journal was really informative, too. Thank you for caring enough about other people, like me, to want to spread awareness of possible causes & cures for CFS/FMS/Dysautonomia. That’s awesome. I go back to my Neurologist the 15th and will definitely ask for a thiamine blood test. Do you know the specifics on the exact tests that should be ordered?? Let me know how yours turns out! I’ll be hoping the best! A “quick fix” to any of our symptoms is always too good to be true, but I hope this is the case for you. 🙂
      I do believe that the root cause for most cases of CFS are metabolic and/or mitochondrial disease or malfunction. There’s so much solid scientific research proving such, and it just makes sense. It’s the only thing that would make sense for the majority of us. And it also explains the difficulty in treating such disorders. But, I’m glad that there is research being done, and hopefully a proven treatment, medication, or cure is on it’s way soon.
      Anyways, I could ramble on here — but I won’t. 🙂
      I hope to hear some good news from you in improving and feeling better. Thank you again for your helpful advice.
      Best of luck and God Bless! 🙂


  5. Posted by Christiane Racette on March 22, 2010 at 9:22 pm

    Regarding your BP crash; maybe midodrine is not suiting you very well, or maybe it has to do with the very short half life of this med, and the time at whitch you take it.
    In my case if I wait more than five hours to take my second dose, I don’t feel so great. I checked in my nursing drug reference book and it says that the half life is 3 to 4 hours. For me it means that I have to take my pills at 0700, 1100, 1600 for the maximum effect.
    Since the mornings are really, really horrendous, I take my first dose at least 30mns before I get up (since my BP is fine lying down) and it has helped quite a bit.

    Ivabradine is not a beta blocker. It falls in the Cardiotonic Agents. It works exclusively on the SA node (main heart pacemaker) and so avoids most of the side effects of beta blockers.
    Here are a few links



    I am still taking a very low dose, but it seems to have slowed down my heart a little.
    I don’t seem to hit the 130’s as often when I do the dishes.
    Hopefuly I’ll see a more exciting decrease when I hit the 5mg twice daily!

    Wishing you all the best.



    • Dear Christiane~

      I can’t thank you enough for all your helpful advice. I apologize for my late reply as well, you know how crazy things can get with such an unpredictable disease.

      Yes, so no help with the midodrine I suppose. My neurologist agreed that maybe it wasn’t right for me, but we’ll see what my cardiologist has to say at my appointment later this month.

      Thanks for the links on the Ivabradine. Sounds like a good drug and particulary helpful for POTS patients due to its different mechanism of action comapred to beat blockers. How are you doing on the increased dose now? (I hope even better!) I just hate tachycardia! I will mention it to my cardio, maybe it would help me too.

      The drug sensitivity is getting obnoxious. I’m sure many drugs would benefit me if I wasn’t so darn sensitive and always having adverse reactions.

      Going to try Savella (milnacipran) this week again. First time was a nightmare because I withdrew from the Lexapro too fast and blah blah. We’ll see how it goes second time around. It’s supposed to help the CFS and FM mainly — but I know it’s been used in the UK for some ten years now and maybe you’d have some more insight? Opinions?

      I am thinking of you and hoping you are doing better. 🙂

      Take care.


  6. Posted by Keith on March 23, 2010 at 10:50 pm

    Hilary, I emailed Bronwyn and this is what she said about the tests,

    ‘To my knowledge there are two tests: erythrocyte transketolase and thiamine diphosphate. The erythrocyte transketolase test measures the activity of an enzyme which is responsive to thiamine while thiamine diphosphate measures the amount of thiamine in the blood. I hope this helps.’



    • That is awesome!! Thank you, thank you so much!!! 🙂 I will ask my doctor for those tests during my next appointment.

      Have you had yours done? When do you find out the results?!

      Hoping for the best! 🙂

      Take care,


  7. Posted by Keith on March 23, 2010 at 11:51 pm

    Funnily enough I armed myself with less knowledge than I’ve armed you. When I asked for the test for thiamine, I didn’t realise there were two different tests. I had one the other day and I’m told it will take two weeks before I get the result but it seems I may need to check which test it was and maybe get the other one also – just to rule it in or out properly.

    Take care sister. Blessings today, to you, your husband and any other family and friends going through all this with you.


    • Well, at least we both know now. 🙂 I’ll be hoping & praying that results come back soon and bring positive news for a speedier recovery!

      Thank you for all your help & kindness.

      God bless you too, brother, and to all yours as well. 🙂


  8. Posted by Fiona B. on May 20, 2011 at 5:38 pm

    In the UK, doctors prescribe Ivabradine for POTS:

    Lower heart rate decreases heart failure:


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